tag:blogger.com,1999:blog-80778278088096461862024-03-04T17:01:59.815-08:00The Long RoadVal Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.comBlogger102125tag:blogger.com,1999:blog-8077827808809646186.post-58274290611434879592024-03-02T16:31:00.000-08:002024-03-02T16:31:49.384-08:00What Is Anticipatory Grief?<p><span style="font-family: verdana; font-size: medium;"> Anticipatory Grief is something that can begin before the person you know has died. </span></p><p><span style="font-family: verdana; font-size: medium;">I realize now that the last nine years of my life I've assumed the role of a Caregiver. The first diagnosis of Stage IV throat cancer changed our lives. [<i>Whoever has had cancer in a loved one or family member will know that the C word changes things forever</i>] </span></p><p><span style="font-family: verdana; font-size: medium;">The event started a cascade of other health events that compounded on Rich's COPD. </span></p><p><span style="font-family: verdana; font-size: medium;">Now we live day to day with a routine of me doing the simple things for my husband that he cannot do. My routine has changed and his care is at the forefront of each of my days. </span></p><p><span style="font-family: verdana; font-size: medium;">At first I was frustrated and a bit angry because I never thought that I'd have to learn to do all the 'man' stuff that was always done by him. Over the years, I've taken on all of the duties around our small farm and it can be very taxing. </span></p><p><span style="font-family: verdana; font-size: medium;">Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give <i>give and give</i> more. Yes, it is common to feel that way as a Giver. It is also common for a Giver to feel guilty at those very same thoughts.</span></p><p><span style="font-family: verdana; font-size: medium;">There are days I look outside and see myself on a camping trip I've longed for, or perhaps a Waterfalling trip...exploring the parks that my state has to offer. Wandering along wooded paths and exploring without a time clock. Reality bites and I am doing my next Giver thing. </span></p><p><span style="font-family: verdana; font-size: medium;">I'm luckier than some Givers. I can still get out for daily walks and sometimes fit in a nice hike at a park close by. </span></p><p><span style="font-family: verdana; font-size: medium;">But I daily grieve for the person I used to be married to. The energetic and sometimes pain in the butt guy. We did a lot of weekend traveling together to see other friends. We camped with our mules and rode parks. </span></p><p><span style="font-family: verdana; font-size: medium;">He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.</span></p><p><span style="font-family: verdana; font-size: medium;">Givers learn things. I learned to drive the skid steer, arrange for maintenance on them, fix fences and reroute them when the deer take them down or trees fall on them. I used to really go after it with gusto. But I'm growing tired of all of my extra duties.</span></p><p><span style="font-family: verdana; font-size: medium;">The point is. Daily some small part of me grieves for the person I used to be married to. The one that gave out hugs all of the time. The one who was independent and vibrant. Not the person who sits quietly and stares out the window. I ask him, "What are you thinking?" He blinks and finally looks at me and replies, "Don't know. Nothing."</span></p><p><span style="font-family: verdana; font-size: medium;">I like to have a plan. I'm always thinking about the 'what if' scenario. Apparently, that is not the healthiest thing to do. However, that is the way my brain functions. </span></p><p><span style="font-family: verdana; font-size: medium;">IF this happens, what is my next step? </span></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p><span style="font-family: verdana; font-size: medium;">Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. </span></p><p><span style="font-family: verdana; font-size: medium;">Each day I grieve a bit more for the person I am losing. I know I am putting forth my best efforts but I can't change what is happening inside his body and brain. Some days I am angry that this happened and think IT is NOT fair! And then there is the guilt for thinking that terrible thought.</span></p><p><span style="font-family: verdana; font-size: medium;">There is no cure for his diseases but a release of pain and suffering when the time does come.</span></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p><span style="font-family: verdana; font-size: medium;">And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. <br /><br />What will I do?<br /><br /></span></p><p><span style="font-family: verdana; font-size: medium;">Will I feel whole or half?</span></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO8vo6QdW1ya_zfMrs0k6wV1TGFM7otjm2m2uejB60vbOqBLEWCEtbZ0n84uddtbVLeroKqJJ_uGXaGf-0v1g9zzZlXUOcccy64-3wbUxzf8uQzTG8XNH5bY7Qo6fOSRxbKpVP6tEsvoKd3sGSn2m8CnGhrOstSABWr6znf4zQTlMS5CMhLsTJqfmM2iY/s896/wtqmgr_bcdffb5fccefc09c63f5b600f2998481cd40ddee.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="704" data-original-width="896" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO8vo6QdW1ya_zfMrs0k6wV1TGFM7otjm2m2uejB60vbOqBLEWCEtbZ0n84uddtbVLeroKqJJ_uGXaGf-0v1g9zzZlXUOcccy64-3wbUxzf8uQzTG8XNH5bY7Qo6fOSRxbKpVP6tEsvoKd3sGSn2m8CnGhrOstSABWr6znf4zQTlMS5CMhLsTJqfmM2iY/s320/wtqmgr_bcdffb5fccefc09c63f5b600f2998481cd40ddee.jpg" width="320" /></a></div><br /><span style="font-family: verdana; font-size: medium;"><br /></span><p></p><p><br /><br /></p><p><br /></p><p><br /></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-23328059986618543162022-10-30T06:12:00.000-07:002022-10-30T06:12:15.752-07:00This is a Long Journey<p><br /></p><p><span style="font-size: large;"><span style="font-family: verdana;">In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. </span></span></p><p><span style="font-size: large;"><span style="font-family: verdana;">In 2017 Rich had a stroke, in 2018 he suffered from a PE. A double Pulmonary Emboli. Each of these medical instances could have ended his life.<br />He also has COPD. According to the medical notes on file, it is Stage 4.</span></span></p><p><span style="font-size: large;"><span style="font-family: verdana;">The doctors think he is amazing as he has really beaten the medical odds. <br />He also has MDD which is treatment resistant. [Major Depressive Disorder]</span></span></p><p><span style="font-size: large;"><span style="font-family: verdana;">Rich can speak fairly well and sometimes he does lose what he wanted to say or the words evade him. We've been a close couple for years so generally I understand what he wants to say, but let him work it out unless he is too frustrated. Then I help him. His memory of things in the recent days evade him too, as well as those memories from just a few years ago.</span></span></p><p><span style="font-family: verdana; font-size: medium;"><b>These things are not really important. <i>NOT to me. What is important to me is quality time together.</i></b></span></p><p><span style="font-family: verdana; font-size: medium;">Our meeting with Palliative Care this week was very emotional for him. He knows that his COPD is an end game for him and he has always been rather Cavalier about it. Thursday he was not. His breathing is a struggle for him and it limits his activity.<br />His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.</span></p><p><span style="font-family: verdana; font-size: medium;">Finally and tearfully, he admitted that he'd just like to go to sleep and be dead. He is not suicidal but he sees no point in continuing in a life where he loses memories, struggles to breath, and has no motivation for life. </span></p><p><span style="font-family: verdana; font-size: medium;">Can you imagine how awkward it feels for him when he ... the tough guy... breaks down and cries while on a Video Appointment with his provider? His Palliative Team sat quietly and let Rich gather himself. Of course she asked if there was any thoughts of suicide and he said emphatically NO. </span></p><p><span style="font-family: verdana; font-size: medium;">He is tired. Tired of not being the productive <i>go get 'em</i> guy that used to whip out the chain saw and cut up fallen trees. He is no longer that dude that had never ending strength and energy. He is tired of being tired. Tired of his words not forming and lost thoughts.</span></p><p><span style="font-family: verdana; font-size: medium;">We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'</span></p><p><span style="font-family: verdana; font-size: medium;">This is the time of year that his MDD really kicks in. The days are shorter. The dark is longer, even with a SAD light, his overall mood is darker.</span></p><p><span style="font-family: verdana; font-size: medium;">His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. </span></p><p><span style="font-family: verdana; font-size: medium;">We are marching towards the end in a steady fashion. </span></p><p><span style="font-family: verdana; font-size: medium;">While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.</span></p><p><span style="font-family: verdana; font-size: medium;">His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.</span></p><p><span style="font-family: verdana; font-size: medium;">I looked at her and sort of shrugged. She is a doctor that works in a clinic and doesn't live with a patient like this day to day. </span></p><p><span style="font-family: verdana; font-size: medium;">His comment is not painful to me at all. It is the truth. I listened to his mother say the same thing while she slowly died from Stage IV kidney disease.</span></p><p><span style="font-family: verdana; font-size: medium;"><i><b>Just let me go. </b></i></span></p><p><span style="font-family: verdana; font-size: medium;">In Palliative Care, the doctors want to make him comfortable as his disease progresses. His Palliative Doctor and others would like to see him try some of the newer treatment for his depression. Those treatments would require 3 visits per week at the average of up to 6 hrs per visit at the VA. That would create 12 hour days for us with a 90 mile drive each day. He said NO.</span></p><p><span style="font-family: verdana; font-size: medium;"><br />Regular doctors want to 'fix' things, it is in their nature. His PCP was willing to get referrals for all sorts of tests. Rich said no. He didn't care if his heart was giving out. He lifted his bracelet and reminded her that he had a standing DNR order in case of heart failure.</span></p><p><span style="font-family: verdana; font-size: medium;">So we wait until next week and see how the morphine goes.</span></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p><span style="font-family: verdana; font-size: medium;">And of course, more Lego building. He seems really fascinated by it and it is an activity, oddly enough, that makes him laugh when I screw up. Last night he even put a few small pieces together.<br />To me? </span></p><p><span style="font-family: verdana; font-size: medium;">Priceless.</span></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-3466526714396390392021-11-17T04:43:00.000-08:002021-11-17T04:43:09.833-08:00Moral Injury or Tortured Soul?<p><span style="font-family: georgia; font-size: medium;">Our visit with the Palliative Care Doctor was in my mind a huge success. Dr. Eskola and the Social Worker, Sarah were very receptive and understanding.</span></p><p><span style="font-family: georgia; font-size: medium;"><br /></span></p><p><span style="font-family: georgia; font-size: medium;">In the past 10 years there is a new thought process...well not new to any Combat Veteran [they know this, yet DO not know this] a newer exploration of PTSD combined with what is called Moral Injury. You can read about it here at <a href="https://www.ptsd.va.gov/professional/treat/cooccurring/moral_injury.asp">Moral Injury</a>-the VA's extensive write up.</span></p><p><span style="font-family: georgia; font-size: medium;">The DAV also has an explanation part of what I will copy and paste below.</span></p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Symptoms:</strong></p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Persistent Negative Emotions –</strong> Veterans who experience moral injury can be overwhelmed by negative feelings. Feelings of guilt, shame, remorse from past acts that violated their code of morals. Often times they feel disinterest in previously enjoyable activities, or genuinely find it hard to feel happy. A veteran may feel like they can’t trust anyone, because they have seen how dangerous the world is or feel emotionally numb.</p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Reliving the event –</strong> Awake or asleep, a trigger can cause painful memories to surface and make the sufferer feel as though they are experiencing the event demoralizing event all over again.</p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Avoidance –</strong> Veterans will often avoid situations that remind them of the event. For example, many veterans avoid crowded places, because they learned overseas that crowds were targets and being in a crowd made you a target. Some veterans will even avoid talking about the incident that affects them.</p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Trust Issues – </strong>Veterans feel like they have lost the ability to trust others and question whether every decision is right. Often veterans will withdraw themselves from society as if they feel like they do not fit in with society’s fabric.</p><p style="background-color: white; color: #333333; font-family: klavika-web, "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px 0px 10px;"><strong>Drug/Alcohol Abuse</strong> – Some veterans may turn to drugs and alcohol when faced with moral issues and dilemmas that linger in their past. They see the drugs and alcohol as a way out from facing the moral guilt built from war or past trauma.</p><p><span style="font-family: georgia; font-size: medium;"><br /></span></p><p><span style="font-family: georgia; font-size: medium;">Aside from the health issues my husband has had, he has Chronic life long PTSD. I've written about his severe depression before so I won't go over that again. </span></p><p><span style="font-family: georgia; font-size: medium;">The Social Worker asked if Rich understood what Moral Injury was and he looked confused. She explained it to him and he still looked a bit confused.</span></p><p><span style="font-family: georgia; font-size: medium;">I asked if I could help explain it. Sarah game me the nod.</span></p><p><span style="font-family: georgia; font-size: medium;">I reached over and asked Rich where it hurt. </span></p><p><span style="font-family: georgia; font-size: medium;"><i>Everywhere, I hurt all of the time. It hurts to think, to breath, to exist.</i> [Not an exact quote because he has aphasia and word finding difficulties]</span></p><p><span style="font-family: georgia; font-size: medium;">I touch his chest, his arm, the side of his head and ask him if it hurts so bad internally that it is unbearable.</span></p><p><span style="font-family: georgia; font-size: medium;"><i>Yes, it is unbearable inside my head inside my</i> ... his hand flutters to motion to his chest and body.</span></p><p><span style="font-family: georgia; font-size: medium;"><i>Me: What if that pain is because it hurts all of the time because of what you did while you were in Vietnam? You once told me that what you were made to do when against everything you were taught about being a good person? Does that sound like the pain you are having?</i></span></p><p><span style="font-family: georgia; font-size: medium;">He nods and tears begin to flow. He gasps and sighs and drops his head. He mumbles that he is<i> not worthy</i>.</span></p><p><span style="font-family: georgia; font-size: medium;">Sarah nods at me and we continue. </span></p><p><span style="font-family: georgia; font-size: medium;">She asks if he will see a Chaplain, if he is open to trying something different to ease his emotional and physical pain.</span></p><p><span style="font-family: georgia; font-size: medium;">He is not sure. However, I ask him what does he have to lose? Why not?</span></p><p><span style="font-family: georgia; font-size: medium;"><br />He asks Dr. Eskola if he can't just get pain meds to make it go away?</span></p><p><span style="font-family: georgia; font-size: medium;">She comforts him by saying her team will address all of his physical and medical issues as well as help him all they can with his mental health issues. She has seen his extremely long medical record regarding the past struggles all the way back to his first VA visit.</span></p><p><span style="font-family: georgia; font-size: medium;">By now he is an emotional train wreck. My heart aches and I feel the pain coming off from him in waves. Seriously...I do. This guy and I have been 'soulmates' for 26 years. </span></p><p><span style="font-family: georgia; font-size: medium;">Our time is up and we make a second appointment to come back. We get in the car and he says he feels tired. I ask him to try this thing, to try and ease some of his guilt. </span></p><p><span style="font-family: georgia; font-size: medium;">He has a hard time wrapping his mind around it.</span></p><p><span style="font-family: georgia; font-size: medium;">It sounds like Hocus Pocus and he has lived with this pain so long that it is a part of who he is. </span></p><p><span style="font-family: georgia; font-size: medium;">He owns his guilt. If he were to let go of it, would it make what he did okay? Would that make him a different person?</span></p><p><span style="font-family: helvetica; font-size: medium;">What we know is that we cannot cure his medical illnesses. That is why we turned to Palliative Care. It is for those with diseases that cannot be cured. However, if one can be more comfortable as they head towards the end of their life, why can't they also set things right with the world?</span></p><p><span style="font-family: helvetica; font-size: medium;">I ask Why Not?</span></p><p><span style="font-family: helvetica; font-size: medium;">Why not calm the tortured soul within to be able to find a bit of peace?</span></p><p><span style="font-family: helvetica; font-size: medium;">Rich received his D.N.R. bracelet. The permanent one will come soon in the mail. This bracelet is an advanced directive signed by his doctor that will notify EMT/Paramedics and ER doctors and hospital staff that he has a standing Do Not Resuscitate order. If the heart stops, let it stop.</span></p><p><span style="font-family: georgia; font-size: large;"><br /></span></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com3tag:blogger.com,1999:blog-8077827808809646186.post-27248371174028041022021-11-14T05:55:00.001-08:002021-11-14T05:55:00.158-08:00And we prepare again... <p><span style="font-family: verdana; font-size: medium;">I want permission from someone to write an open letter to my husband's daughter. But family is messy. So how do I handle that balance? I don't know.</span></p><p><br /></p><p><span style="font-family: Bitter; font-size: medium;">What it is like living with MDD, COPD, PTSD, and the after effects of a major stroke, cancer, PE, and other health issues. </span></p><p><br /></p><p><span style="font-family: Bitter; font-size: medium;">Here is where I insert a comment that Caregivers are worth their weight in gold. All Caregiver support people insist that a Caregiver get time off or help. </span></p><p><span style="font-family: Bitter; font-size: medium;">Really, let's not laugh too loudly. </span></p><p><span style="font-family: Bitter; font-size: medium;">No. </span></p><p><span style="font-family: Bitter; font-size: medium;">Family acts as if they ignore the issues, they will simply go away. Hiring someone is perhaps an option if you do not live in a rural area that doesn't even have enough help to keep open one of the local nursing homes.</span></p><p><span style="font-family: Bitter; font-size: medium;">My husband was perfectly happy being more or less isolated before the Pandemic hit. Even after his vaccinations, he remains cautious and prefers staying home to going anywhere. </span></p><p><span style="font-family: Bitter; font-size: medium;">We eat out in the car while traveling to and from appointments at the VA. For nearly a year, all appointments were cancelled. Now we are going to prepare to enter another phase of care which is called Palliative Care.</span></p><p><span style="font-family: Bitter; font-size: medium;">He tried that once before when he had cancer and didn't really stick with it. </span></p><p><em style="background: rgb(255, 255, 255); border: 0px; box-sizing: border-box; color: #2e2e2e; font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin: 0px; outline: 0px; padding: 0px;">Palliative Care </em><span face="Arial, Helvetica, sans-serif" style="background-color: white; color: #2e2e2e; font-size: 15px;">uses comfort care with a focus on relieving suffering and controlling symptoms so that you can carry out day-to-day activities and continue to do what is most important to you. Palliative care aims to improve your quality of life – in your mind, body and spirit.</span></p><p><span face="Arial, Helvetica, sans-serif" style="background-color: white; color: #2e2e2e; font-size: 15px;">Palliative Care is provided by an interdisciplinary team consisting of a medical provider, social worker, nurse, chaplain, mental health provider and perhaps others. The team’s focus is on identifying, respecting and providing help in achieving the Veteran’s goals of care, with support and care to address: physical symptoms, family coping, emotional or spiritual distress, and access to needed resources.</span></p><p><span style="font-family: Bitter; font-size: medium;">However, we will make it work this time as he needs comfort care for both his health issues and mental anguish. If anyone ever tells you that depression is just something you can bounce out of, tell them to go to hell.</span></p><p><span style="font-family: Bitter; font-size: medium;">Depression can become so painful and so deep that it causes every pore and every fiber of your body to hurt.</span></p><p><span style="font-family: Bitter; font-size: medium;">Combine this painful depression with major health issues, and you have a messy cauldron of mental and physical pain.<br /><br /></span></p><p><span style="font-family: Bitter; font-size: medium;">I'm trying to spend the weekend figuring out and having a heart to heart discussion with Rich to prepare him for meeting with the Palliative Care Team.</span></p><p><span style="font-family: Bitter; font-size: medium;">His main goal is pain meds which his regular doctor seems to be against. He other huge concern is NOT going to a hospital. </span></p><p><span style="font-family: Bitter; font-size: medium;">Last year he was dropped into the local hospital when he had a mild urine infection and they gave him the full Covid treatment. The strong steroids caused hallucinations and the mix up in his meds caused extreme pain and confusion.</span></p><p><span style="font-family: Bitter; font-size: medium;">I'll never forget getting the call from him and he was frantic and crying. I had his daughter call him and later she told me that her father was a 'Drama Queen.'</span></p><p><span style="font-family: Bitter; font-size: medium;">Years ago, I sort of agreed with her. He did make mountains out of mole hills it seemed. </span></p><p><span style="font-family: Bitter; font-size: medium;"><br /></span></p><p><span style="font-family: Bitter; font-size: medium;">However, I live with him day to day. I see what upsets him and what doesn't. Lies, white lies, and deception to him are unforgivable. </span></p><p><span style="font-family: Bitter; font-size: medium;">Why? In Vietnam, he was lied to and deceived. Surviving meant learning to trust those around you. If you could not trust your comrades, it meant death.</span></p><p><span style="font-family: Bitter; font-size: medium;">That is probably an oversimplification, but in layperson terms, that may be the only way it can be expressed. </span></p><p><span style="font-family: Bitter; font-size: medium;">I am known for being honest and straightforward with no bullcrap. </span></p><p><span style="font-family: Bitter; font-size: medium;">When we talk about things, his health, our relationships, and life. I am honest. Yes, I do try and ease things for him. But I am honest and have been since the day we met.</span></p><p><span style="font-family: Bitter; font-size: medium;">How many times have I seen EMT's take him away from our home? How many times have I watched him nearly die and come back? Too many. </span></p><p><span style="font-family: Bitter; font-size: medium;">How many times has a medical professional sat me down in a quiet room to tell me the worst news. Too many times.<br /><br /></span></p><p><span style="font-family: Bitter; font-size: medium;">How many times have I driven him to the VA to be admitted to the mental health ward? So many times. </span></p><p><span style="font-family: Bitter; font-size: medium;">What have I learned with this relationship of ours? We have a very deep love for each other. Truly we have tested 'To Honor and Cherish' from this day forward.</span></p><p><br /></p><p><span style="font-family: Bitter; font-size: medium;">As far as being a Drama Queen? Perhaps if someone were to understand what exactly it is like to live in such incredible mental anguish along with incurable life ending diseases...well,</span></p><p><span style="font-family: Bitter; font-size: medium;">perhaps, they would have a different viewpoint.</span></p><p><span style="font-family: Bitter; font-size: medium;"><br /></span></p><p><span style="font-family: Bitter; font-size: medium;">And so we prepare for the next chapter.</span></p><p><span style="font-family: Bitter; font-size: medium;"></span></p><p><span style="font-family: Bitter; font-size: medium;">I hope to have some updates after next week.</span></p><p><span style="font-family: Bitter; font-size: medium;"><br /></span></p><p><br /></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-10800928862421298102021-08-17T06:54:00.006-07:002021-08-17T06:54:55.497-07:00Up and Down and All Around<p>Sometimes our lives are funny and sometimes sad.<br /><br /></p><p>Sunday I'd asked Rich if he minded that I go to KVR [Kickapoo Valley Reserve] and take Charlie for a hike on the shorter trail. <br />He huffed and puffed over his morning coffee, as if I'd just asked him if I could cut off one of his arms or legs. </p><p>"How long will you be gone?"</p><p>Me: Well as long as it takes to drive there, hike, and get back.<br /><br /></p><p>"How long is that?"</p><p>Me: There is a sudden realization that now I have to give times for him. Just like this weekend when I walked along the north facing hillside while he was napping. I had the 20 questions. Of, How Long, Where, When, What are you looking for?<br /><br /></p><p>Me: Oh it takes about 25 minutes to get there and an hour or so to walk the trail, it is 1/2 mile long, straight out and back. I should be back before lunch and probably right after or at the end of your morning nap.</p><p>"I don't always take naps."</p><p>I nod, but don't answer and I wait.<br />He sighs and sips his coffee. <br /><br /></p><p>Me: Are you afraid of me leaving the house to do things?<br /><br /></p><p>"Well you always get to do what you want, you are going to do it anyway." <br />His tone was that of a petulant child.</p><p>Me: Well, what would you like to do? Want to come along for a drive perhaps? Would you like to drive to the river and check things out?</p><p>"No." He stares out the window and I see the blankness. He finally says to me...<br />"Fine. Go."</p><p>Me: Okay. <br />I pack things up and head out the door. My hike is enjoyable and for a while I forget about all the things I need to do. I promise myself NOT to look at my phone to keep track of time and I hide it in my backpack. Charlie and I take our time walking the length of the trail and I pick up the pace on the way back.</p><p>On the drive home I think about Covid. I think about masks, I think about risks, and what I need to do to help keep him safe. I think about Rich's daughter and family who have decided not to keep in contact with Rich because we are adamant about safety and vaccinations. Besides, she is too busy. Too busy for a vaccination, too busy to call to talk to her father, too busy period. And I think a moment about that. <br /><br /></p><p>Then I hit the button on the dash for Pandora and enjoy the rest of the drive home with the music blasting and Charlie sleeping in his 'car seat'. </p><p><br /></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com7tag:blogger.com,1999:blog-8077827808809646186.post-54363264204702340532021-07-03T05:21:00.000-07:002021-07-03T05:21:03.636-07:00The Mind is a Curious Thing<p><span style="font-family: verdana;">Is it forgetfulness?</span></p><p><span style="font-family: verdana;">What are spatial issues? What are cognitive issues? Who decides? <br />Did you know that most patients -- I assume myself one day will be included -- understand they have cognitive issues but don't let their doctor know and can hide most symptoms quite easily.</span></p><p><span style="font-family: verdana;">There is a Chart of 10 questions that can be asked:</span></p><p><span style="font-family: verdana;">However. Who follows this? Who asks? Certainly if the doctor asks the patient, the patient will rarely admit that he/she cannot complete the list.</span></p><p><span style="font-family: georgia;">In the past 4 weeks does the patient have any difficulty or need help with:</span></p><p><span><span style="font-family: georgia;">1. Writing checks, paying bills, or balancing a checkbook. </span><br /><span style="font-family: times;"><i>Hasn't been able to in 5 years.</i></span></span></p><p><span><span style="font-family: georgia;">2. Assembling tax records, business affairs, or other papers.</span><br /><span style="font-family: times;"><i>Hasn't been able to do in 5 years.</i></span></span></p><p><span><span style="font-family: georgia;">3. Shopping alone for clothes, household necessities, or groceries.</span><br /><span style="font-family: times;"><i>Mute point, cannot drive, hasn't driven in over 5 years.</i></span></span></p><p><span><span style="font-family: georgia;">4. Playing a game of skill, working on a hobby.</span><br /><span style="font-family: times;"><i>Gets lost in card games or any simple game. Frustrating. Stopped working on hobbies in 2017.</i></span></span></p><p><span><span style="font-family: georgia;">5. Heating water, making coffee, turning off the stove.</span><br /><span style="font-family: times;"><i>Doesn't understand how to use the stove. Hands too shaky to make coffee.</i></span></span></p><p><span><span style="font-family: georgia;">6. Preparing a balanced meal.</span><br /><span style="font-family: times;"><i>No. Unless making microwave instant oatmeal for breakfast lunch and supper is considered balanced. It is the only meal he will prep for himself.</i></span></span></p><p><span><span style="font-family: georgia;">7. Keeping track of current events.</span><br /><i><span style="font-family: times;">No, doesn't follow news or read the paper.</span></i></span></p><p><span><span style="font-family: georgia;">8. Following a TV show, book, or magazine and being able to discuss them with acquaintances.</span><br /><span style="font-family: times;"><i>No reading as it doesn't make sense to him. TV is sometimes confusing, but it is something he will do all day.</i></span></span></p><p><span><span style="font-family: georgia;">9. Remembering appointments, or remembering to take medications, keeping track of recent conversations, recent events and the date.</span><br /><i><span style="font-family: times;">No on appointments, I often remind him to take evening meds. It is a ritual so he will eventually recall or check his pill box to see if he needs to take something. Somedays are good some are not.</span></i></span></p><p><span><span style="font-family: georgia;">10. Driving, traveling out of the neighborhood, or arranging for public transportation.</span><br /><i><span style="font-family: times;">No no no on traveling. He won't leave the house. Last time he left the house was for his mom's funeral and a blood draw. He hasn't driven in 5 years and will not answer the phone or make phone calls unless it is my cell phone number.</span></i></span></p><p><span style="font-family: georgia;"><br /></span></p><p><br /></p><p><span style="font-family: verdana;">So what is the scoring for this?</span></p><p><span style="font-family: georgia;">Let's see the score guide.<br />0 Can do this without help.<br />1 Have some difficulty, but can do this without help.<br />2 Need help with this.<br />3 Can't do this.<br />0 Never did this activity.</span></p><p><span style="font-family: verdana;">How do you address these issues?</span></p><p><span style="font-family: verdana;">What if...every question is no, but the patient feels that a balanced meal is a bagel or instant oatmeal. Since they watch programs, they must be able to follow them right? </span></p><p><span style="font-family: verdana;">So if I were to answer the questions honestly for my husband there is not one item on that list that he can really do. He most definitely cannot follow most programs unless they are in a standard format. </span></p><p><span style="font-family: verdana;">Would he be a perfect 30? Or does he get a partial point for remembering to take his meds when he eats breakfast [a routine of 30+ years].</span></p><p><span style="font-family: verdana;">Somehow the VA feels that since he can recall to take meds and says he can make meals and dress himself, he doesn't need their extra help.</span></p><p><span style="font-family: verdana;">New things that have changed since last year's assessment. </span></p><p><span style="font-family: verdana;">He is not aware of lack of combing his hair, or personal hygiene. He feels it isn't in his time frame and doesn't want to do it. It results in a rather intense argument when I bring it up.</span></p><p><span style="font-family: verdana;">He can't use a knife to cut up things like apples, peaches, pears. I have to do it. He wants to go outside to do yard work, but spends about 20 minutes looking out the door and then goes for a nap.</span></p><p><span style="font-family: verdana;">He can dress himself.<br />The only way I can get him to put on clean clothes even if he won't bath, is to take away his dirty clothes while he sleeps and replace them with clean clothes.</span></p><p><span style="font-family: verdana;">I get very irritated and angry and have to constantly remind myself that this is not him being a <i>jerk</i>. But his mind is on another timeframe or some other universe.</span></p><p><span style="font-family: verdana;">It is like when I am waiting for my computer to make a connection and I get those little blue circles...and then an error pops up.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnylLB7b4iliG2kVeXVfPnGh7vK90EYoPHHf-CnS3eeAAsAaywWEImgRh4_uP9cOT7JMJFjROzhN3gEGcD_rckGtr6mMdQywBlGOOnMAutAXN54lOCysVRpjKHo7vX2UD3e7AVPXgMXQc/s571/001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="309" data-original-width="571" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnylLB7b4iliG2kVeXVfPnGh7vK90EYoPHHf-CnS3eeAAsAaywWEImgRh4_uP9cOT7JMJFjROzhN3gEGcD_rckGtr6mMdQywBlGOOnMAutAXN54lOCysVRpjKHo7vX2UD3e7AVPXgMXQc/s320/001.jpg" width="320" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">Weeks are not in his timeframe. Days are just days waiting for a nap or bedtime. <br />The other night he sat up at the table after I told him I was walking to the ridge to take photos. </span></p><p><span style="font-family: verdana;">Currently every time I get ready to go to the store or go shopping for food, he asks where and when I am going. </span></p><p><span style="font-family: verdana;">I can tell him what we are eating for supper in the morning and he asks me near supper time what we might be having. I give him time to recall and then tell him.</span></p><p><span style="font-family: verdana;">His words are still backwards and sometimes I have to really concentrate on what he means when he talks.</span></p><p><span style="font-family: verdana;">So. What do I want as a CareGiver? I would like some respite if it was safe to do so with Covid still running about.</span></p><p><span style="font-family: verdana;">I would like someone to come in once a week to help bath him. He won't fight a nurse, doctor, CNA, or other person who will ask him to wash, change his clothes, or even mild exercise.</span></p><p><span style="font-family: verdana;">But for me to ask, it becomes a huge issue which leads to arguments such as ... I am stealing money, I am bossy, I am a nag. Anything out of his routine of coffee, breakfast, nap, TV, nap, lunch, nap, TV, supper...is disruptive. </span></p><p><span style="font-family: verdana;">Thursday I'd had it up to ... there. I was done. All done in. </span></p><p><span style="font-family: verdana;">I considered asking his daughter to give me a break but she won't as she thinks her dad is fine and is just a drama queen. </span></p><p><span style="font-family: verdana;">I'm going back to the VA Caregiver program and asking for a new assessment. </span></p><p><span style="font-family: verdana;">I can't fight daily any more. </span></p><p><span style="font-family: verdana;">No worries, I am okay. </span></p><p><span style="font-family: verdana;">But I write this for other CareGivers so they know they are not alone in all of this.</span></p><p><span style="font-family: verdana;">This is a hard trail/path to follow and a person has to really seek out assistance.<br />One of the next calls that will be made aside from calling the VA CareGiver program, will be to ADRC to have the local county nurse come out and do an assessment of hubby's needs.</span></p><p><span style="font-family: verdana;">This feels like we have been forgotten and since all appointments have been by phone or video, they don't really get the feel for how he is doing or not doing.</span></p><p><span style="font-family: verdana;">That's it. Sorry for being so long.</span></p>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com12tag:blogger.com,1999:blog-8077827808809646186.post-42972099497325293442021-04-30T07:34:00.003-07:002021-04-30T07:34:30.669-07:00You Gotta Love MDD<p>Also known as Major Depressive Disorder.</p><p>Every single time Rich's MDD has come along [it runs in cycles, meds work for a while and then...] ... well then it creeps in slowly.</p><p>First red flag is him being extremely critical of every THING I do. I didn't feed the mules properly. I should be standing and watching the 300 gallon tank fill. The coffee tastes bad [I make coffee to his specifics each morning separately than my own coffee].</p><p>The sun is shining. The sun is not shining. </p><p>~~~~~~~~</p><p>I went into the woods to get that very first black morel mushroom. I thought it would make him smile. </p><p>He went off on some strange offshoot and gave me a lecture regarding mushroom hunting. He then went on to tell me about some weeds I had to go work on in the forest. I mentioned that the jewel weed was there in 2010. An argument ensued. </p><p><i><b>The grand kids in Jewel Weed July </b></i><b><i>4th 2010</i></b>. Yeah, that is the only reason I know exactly what year it was.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDpzklhu2ejDJ7jIPxGFaFRY60WCFWcNA8TPCwbq0LTRMXK49MCPPm6haDQyzyFOt3MITtwlZxy8-1844WVMqwquCuk_VIi2l3_nVLSiKCWR9mvFQ7lW1iBJ8EDpIDlKXPlPlVQPDXjKQ/s750/4768084070_13dd5540a4_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="563" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDpzklhu2ejDJ7jIPxGFaFRY60WCFWcNA8TPCwbq0LTRMXK49MCPPm6haDQyzyFOt3MITtwlZxy8-1844WVMqwquCuk_VIi2l3_nVLSiKCWR9mvFQ7lW1iBJ8EDpIDlKXPlPlVQPDXjKQ/s320/4768084070_13dd5540a4_o.jpg" /></a></div><br /><p><br /></p><p>[He hasn't been in our woods since 2016.] </p><p>Bam. It hit me. His time frame was different than mine. </p><p>So.</p><p>I agreed with him. Yes, I needed to take care of the Jewel Weed. I didn't even talk about the Dexter Cattle taking care of that for us. Best to let some things just drop.</p><p>No sense in trying to correct a memory. He has his own time frame that gets mixed up a lot. I guess I am going to have a long discussion with the Caregivers Social workers next week.</p><p>Another thing he has issues with once in a while, is that he thinks he is a randy 19 year old. Full of vim and vigor. A sexual god if you catch my drift. This is awkward but I'm going to address it here or my head will explode.</p><p>He thinks I am mean when I rebuff his strange advances. He forgets that once he tries intimacy it all falls apart. He can't breath and he can't do what he wants so he gets very angry or very depressed. I am then stuck in the house with clouds of charged particles in the air.<br />It is like walking on nuclear egg shells.</p><p>He cannot walk to the shed without a rest. He struggles when just getting dressed or undressed. But in his head he is a sexual god and it is my fault when he isn't. There really is no win-win to this at all. His is a fantasy in some ways which lives in his head. With mild dementia it is all true. He is the god of sex. </p><p>Well...until he gasps and asks me to set up his oxygen that is....</p><p>So instead of worrying about life with the god, I keep my head down and do the mundane things that I am supposed to do. I go for walks. Which became an issue in itself. </p><p>He decided that since I had the vaccine I should sleep or sit on the couch. I shouldn't go...go ... go. </p><p>His depression. It is insidious and creeps up getting worse and worse until the black hole swallows him. His latest med change was a last ditch effort and it worked for a pretty long time. Just over a year. </p><p>I'm his caregiver. There are days when I want to close the door and walk away and keep walking never looking back. <br />But I am not that kind of person.</p><p>He struggles with his mind. He knows that he used to be young strong and invincible and somedays he still thinks he is. Then he is angry with the betrayal of his health and mind.</p><p>I am the only other living soul here on our farm. So I get to be the Fall Guy. </p><p>I miss my friend. <br /><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu2fFCMD4WsgLTmEaKyB-uAUZ_HOz0u816va91DIGHFskw0JY7YhIKoA03bnYrgF_I4bjQDhxpdM5_HblFyFU5AFbTjkccJHcbv1h6XHHchPM28VP3s4GBFC5_M90K4Nas4xHUl7WR1lY/s799/2793375813_ef495cd8f3_c.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="539" data-original-width="799" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu2fFCMD4WsgLTmEaKyB-uAUZ_HOz0u816va91DIGHFskw0JY7YhIKoA03bnYrgF_I4bjQDhxpdM5_HblFyFU5AFbTjkccJHcbv1h6XHHchPM28VP3s4GBFC5_M90K4Nas4xHUl7WR1lY/s320/2793375813_ef495cd8f3_c.jpg" width="320" /></a></div><div><br /></div><br /><p>I miss my sense of adventure and doing my own thing whatever that was.<br />I've bowed over and over to the goddess of MDD.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqRzkw7B3lBhbG7yXKHQ8LY8ItWJi_XbYyd0umOQvwCJr6yY4wNTqyFxHisht67REUqhkqFO9Zw2P-AQWj1P4LhZ4NlpdJcZiQqvTbpPCO1EvDSJPHFuWQNvXl2fxksmX35RMuGgiggI/s800/33449668583_b98e3f0559_c.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="528" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghqRzkw7B3lBhbG7yXKHQ8LY8ItWJi_XbYyd0umOQvwCJr6yY4wNTqyFxHisht67REUqhkqFO9Zw2P-AQWj1P4LhZ4NlpdJcZiQqvTbpPCO1EvDSJPHFuWQNvXl2fxksmX35RMuGgiggI/s320/33449668583_b98e3f0559_c.jpg" width="320" /></a></div><div><br /></div>It makes me exhausted.Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com12tag:blogger.com,1999:blog-8077827808809646186.post-92115673349890698092019-10-08T04:31:00.001-07:002019-10-08T04:31:34.310-07:00Sorting it outOver all Rich's health physically since the knee surgery to remove the nasty patella bursa, he has regained mobility and some strength in that knee. We have been seeing PT twice to three times a week and it is obvious to me that he needs to be going back to Pulmonary Therapy.<br />
<br />
I try to bribe him into moving about and doing things. But he is focused more on either sitting at the kitchen table and staring out the window [when I inquire as to what he is looking at he seems to come back into the present world and blink...his answer? "Nothing."]<br />
<br />
Part of this is the damage done to his brain from the stroke in 2017.<br />
<br />
One of the very hard things to separate out with all of Rich's past history of PTSD and MDD is the lack of motivation which was there pre stroke but is now much worse.<br />
In fact the medical field studies Apathy and Hypersomnia. Both of these neurological issues can happen after a stroke in the front part of the brain. Let's toss in some other medical issues and the patient becomes very 'complicated' as the doctor who did the knee surgery said to us.<br />
<br />
Is it depression? Is it PTSD? Is it neurological? Bradycardia? COPD? Is it the Pulmonary Emboli? Painful bursa? Is it imagined? Is it real? What is it?<br />
<br />
Hypersomnia is just a fancy word for being tired all of the time. Rich had this during his last bought of severe depression. He keeps telling Dr. Schiffman that he wants to feel energetic and motivated yet he just feels tired and can't seem to get out and do anything.<br />
<br />
Since I live with Rich daily, I see little bits and pieces that the doctors don't see.<br />
<br />
Going to Culvers last week, I handed him an empty soda cup so he could get his Pepsi. I paid and then walked over to where he was at. He stood in front of the soda machine and held the cup.<br />
"I should know this," he said. There were people waiting so I said, "Let me."<br />
I took the cup and filled it and handed it to him. He shook his head.<br />
<br />
When we sat down to eat he mentioned the soda incident and told me that it really bothered him.<br />
<br />
There are small things that happen and finally we got into a discussion one morning.<br />
He said he was 'Dizzy'. He'd said that often to Dr. Schiffman and to his therapists who took B/P, 02 readings and came up with normal. It flummoxed most of the doctors.<br />
<br />
So I asked Rich.<br />
"Tell me about Dizzy. Is the room spinning?"<br />
<i>No.</i><br />
"Do you feel like you are going to barf?"<br />
<i>No.</i><br />
"Does it feel like you did when you had Brain Fog from chemotherapy?"<br />
He glanced at me.<br />
<i>Yes! It feels like I am not connecting! I don't like it.</i><br />
"Your brain suffered a pretty bad injury in 2017. So it has troubles on some days making sense of everything."<br />
<i>I don't like it.</i><br />
<br />
I feel like I am watching a slow motion crash happening one very infinitesimal step at a time. However. At least I am here for that journey right now. I can be a part of it with him.<br />
<br />
<i><br /></i>
There will be days of heartache and frustration,<br />
anger and resentment...<br />
<br />
laughter and love<br />
joy and sorrow.<br />
<br />
One day at a time.<br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com3tag:blogger.com,1999:blog-8077827808809646186.post-38944865157236305132019-03-25T06:43:00.001-07:002019-09-26T05:21:36.460-07:00Revisit Angry DepressionMy husband now has a list of medical conditions that could make any physician scratch their heads. His PCP last week had to deal with his newer condition of Depressive Anger.<br />
<br />
The least little thing will set him off now.<br />
<br />
It was a pretty bizarre evening last night. I had made a cake and a pretty decent supper. I know eating supper together has always been pleasant for us. Well not last night.<br />
<br />
MDD, Major Depression Disorder has come back something fierce. At first I thought it was acceptable because of his issues with the Pulmonary Emboli in both lungs and the hospital stay and the pain in the knee from the bursitis that was excruciatingly painful..<br />
However he said he 'hurt all over' everything hurt. [I've learned over the years that MDD causes the body to hurt all over...it is a sign that he is going into a very bad place.]<br />
<br />
He had a major fight with his daughter and yelled at his mother on the phone last week.<br />
<br />
Instead of leveling off, the internal and external anger has become more pronounced.<br />
<br />
Living with MDD is interesting. You need to have thick skin and emotional walls of concrete.<br />
I set him off in a rage yesterday after working outside for hours, I came in to check on him and to make him something to eat.<br />
I walked into the bedroom to see if he was okay and would like something to eat.<br />
<br />
He blew up.<br />
How dare did I interrupt his nap?<br />
<i>Why couldn't he get any sleep around here without someone bothering him?</i><br />
He got up and tossed the covers aside.<br />
<i>I'm tired and I wanted to sleep so I could shower! And you won't let me!</i><br />
I replied that I'd been outside for hours and ....how was I to know? I knew the nap for a shower wasn't really a reason for sleeping. Showering had become another new issue for us. Before I could assist him with showers while he was recovering. The last time he did a major portion of it by himself.<br />
<br />
The fact that he did not care if he was dirty or smelly and would fight my suggestions for getting washed up was a huge indicator of his depression.<br />
<br />
<i>YOU just won't stop bothering me!</i><br />
He came up and began to poke me with his fingers and imitated as best as he could my voice:<br />
<i>How are you? Do you want something to eat? Can I get you something? Why don't you take a shower? Want to wash up? NAG nag nag!</i><br />
<br />
He poked and poked.<br />
<i>I'm going to wake you up every 30 minutes tonight, see how you like it.</i><br />
<i><br /></i>
I stood still and silent. No arguing with Depression Rage or whatever you want to call it.<br />
I silently wondered if I could get him in the car and take him to the VA Emergency Department. Sundays were generally bad days for that. And the thought of a 2 hr drive with Rage in the other seat was not anything I wanted to consider.<br />
<br />
He went on to other small inconsequential things that I have done over the week. One of the items he was furious about was that I was selling one of my older cameras. He simply went on and on.<br />
I remained silent as One, it was my camera. Two I rarely used it anymore, and Three how did it matter in the larger scheme of things?<br />
<br />
Silent. You can't argue with The Transformed Man. Once that ball of anger gets rolling it keeps getting larger and larger.<br />
<br />
Last night we went to bed.<br />
He pulled the covers off me.<br />
Then waited until I put them back on.<br />
20 minutes later he started poking my shoulder and asking <i>Are you Awake? How do you like that?</i><br />
<i><br /></i>
It was juvenile, I admit. But I knew he'd fall sound asleep soon.<br />
I decided to move a bit later when he fell into deep sleep.<br />
<br />
I don't understand why his PCP didn't ask for intervention when he argued with her earlier this week.<br />
<br />
The scary part of this? I responded with nothing. His tirade never even phased me.<br />
After his oxygen delivery today I will risk asking him to go to the VA ED.<br />
<br />
<br />
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<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-47676546650032210172018-12-20T04:48:00.002-08:002018-12-20T04:49:20.496-08:00He Ain't Done with You Yet<div class="separator" style="clear: both; text-align: center;">
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<div style="text-align: center;">
<span style="font-family: "georgia" , "times new roman" , serif;"><i>Rabbit to Bear: I will always be by your side.</i></span></div>
<br />
And the Principal Care Provider looked up at my husband from her computer and the mess of sheets from Gundersen Lutheran Hospital in front of her. She sighed and then asked how are you feeling?<br />
<br />
"Like shit," he answered simply. Dr. Sauvery knows Rich well enough to know that means 'overall crappy in health and mood'.<br />
"Depressed over this?" she asked.<br />
"Well, of course."<br />
<br />
She nodded. "That was a significant PE that you went through. Frankly I am surprised you are alive. Very few people survive what you went through so I guess you should feel lucky?" Dr. S is straightforward and she knows Rich wants to hear it that way.<br />
<br />
"Lucky?" he asks with a glance at her and then the floor, "Lucky? Well I don't know about that. I may feel better if I was dead." His hand comes up shaking a bit from his enormous fatigue.<br />
"To live like this? This is not being alive."<br />
<br />
She nods, "Yep, your are right, but you survived and you need rest and you WILL feel better."<br />
She does and exam as she talks. "You are amazing, all of these things you've been through would have,"...she shrugs, "you must have amazing genetics and you must be here for a very good reason."<br />
<br />
Rich looks tired and worn out. So Dr. S sits next to him and puts her hand gently on his arm.<br />
<br />
"You go home and rest, follow your meds. YOU let Christmas come to you and New Years also. You set in that easy chair and tell the kids that Grandpa is tired and needs his rest. You enjoy those kids. You enjoy them seeing you. Have family make visits but be short. This is winter and the weather is yucky, you don't have to go out and do stuff outside..."<br />
<br />
This was the longest 'speech' Dr. S has ever made. Then when we stood to leave, she hugged Rich and then me. Her parting words were said quietly, and I don't believe they were meant for Rich to hear...or???<br />
<br />
<i>"Watch over him as you do. You are an Angel at his side."</i><br />
<i><br /></i>
We check out at the desk. Rich has known the receptionist there for many years. She asks, "Dang Rich you were in the hospital again! What happened?"<br />
He responds, "Well I guess I am lucky to be here, most don't make it through the really bad blood clot thing I had I guess." He shrugs.<br />
The place is quiet and the other receptionist steps over.<br />
She has a very southern drawl.<br />
"Sir, I think God put you on this Earth for a reason and ain't done with whatever He has intended for you."<br />
<br />
We set up the follow up appointment, Rich comments quietly, "If I make it to spring."<br />
<br />
<i><br /></i>
I helped my exhausted sweet heart get into the Subaru and get settled. The sun was getting ready to set in a blaze of colorful glory. Rays of light blasted through holes in the clouds and went up into the sky while another set lit up the countryside.<br />
<br />
Rich reclined in the seat and was silent for our drive home.<br />
<br />
<i>Rest.</i><br />
<i>See your family.</i><br />
<i>See your Grand children.</i><br />
<br />
My mind went places it perhaps shouldn't have.<br />
He had cheated death again. The Grim Reaper had knocked on the door a week ago on that frosty foggy morning.<br />
Exactly how much more pain and discomfort could a person live with.<br />
<br />
<span style="font-family: "trebuchet ms" , sans-serif;"><i>"Sir, God put you on this Earth for a reason and he ain't done with you yet."</i></span><br />
<br />
I wonder. And I drive home in the quiet car and fight back all sorts of thoughts and emotions.<br />
I reach over and lightly hold his hand while I can on the nice straight parts of the road.<br />
<br />
We've had quite the journey together, I think.<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-48573384861872845072018-08-14T06:03:00.000-07:002018-08-14T06:03:06.119-07:00MDD<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
Major Depressive Disorder sometimes doesn't respond well to medications.<br />
<br />
My husband has battled ... or lived with depression for many years. Treatments come and go in the form of "Let's try this medication or try this medication". Sometimes the meds fail miserably.<br />
<br />
Rich is a very unusual person in that most prescribed meds seem to have severe side effects in some way. His medications for depression seem to take the edge of for a few years and then stop working.<br />
<br />
During his treatments for Throat Cancer he had an anaphylactic reaction to a 'safe' chemo medication.<br />
<br />
The cycle came around again. The last time we saw Lindsey [Rich's psychologist] I told her exactly what would happen. I also met his psychiatrist in the hallway and cornered him with Rich's previous psychiatrist.<br />
I warned the doctors of what was going to happen and what had happened over the years.<br />
<br />
"Rich is a train wreck speeding towards a crash and burn again. And you guys need to know this, it gets worse and worse ... he speeds like a locomotive out of control and then hits the end of the tracks..." I took my hands and threw them in the air, "..and boom. I am sitting in the ER with him and I keep coming back until he is admitted for an in hospital evaluation." I pointed at the doctors and then said, "You know it. You do. Look at the records for the past 20 years. Let us prevent that train wreck."<br />
<br />
Oh they nodded and agreed. And as before, they suggested a change in medications.<br />
I'd made my point that day but knew I'd be making that drive to the ER soon enough, but hoped that I wouldn't have to.<br />
<br />
Over the past week Rich's depression worsened. He did get up a few times and interacted with our company but retreated to the bed. I noticed that he didn't want to take his medications, he didn't want to drink fluids, he just wanted to be in bed and then complained that all he could do was lay down and stare at the ceiling fan.<br />
By Monday morning he had withdrawn completely.<br />
<br />
I called and talked to the triage nurse and I knew that we'd be heading to Madison.<br />
<br />
He was admitted for MDD that was severe.<br />
Different treatments were discussed and reviewed by the Mental Health team.<br />
<br />
It seems that he will be a candidate for Ketamine Infusion.<br />
I'd never heard of it before.<br />
<br />
...And forever, I will support him and help in whatever way I can...<br />
<br />
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<br />
<br />
<span style="background-color: black; color: white;"><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">You're broken down and tired</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">Of living life on a merry go round</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">And you can't find the fighter</span></span><br />
<span jsname="YS01Ge" style="background-color: black; font-family: Roboto, arial, sans-serif; font-size: x-small;"><span style="color: white;"><br /></span></span>
<span jsname="YS01Ge" style="background-color: black; font-family: Roboto, arial, sans-serif; font-size: x-small;"><span style="color: white;"><span jsname="YS01Ge">When the silence isn't quiet</span><br /><span jsname="YS01Ge">And it feels like it's getting hard to breathe</span><br /><span jsname="YS01Ge">And I know you feel like dying</span><br /><span jsname="YS01Ge">But I promise we'll take the world to its feet</span><br /><span jsname="YS01Ge">And move mountains</span><br /><span jsname="YS01Ge">We'll take it to its feet</span><br /><span jsname="YS01Ge">And move mountains</span></span></span><br />
<span style="background-color: black; color: white;"><br /></span>
<span style="background-color: black; color: white;"><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">And I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise like the day</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise unafraid</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">And I'll do it a thousand times again</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">And I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">High like the waves</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">In spite of the ache</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">I'll rise up</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">And I'll do it a thousands times again</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">For you</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">For you</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">For you</span><br style="font-family: Roboto, arial, sans-serif; font-size: small;" /><span jsname="YS01Ge" style="font-family: Roboto, arial, sans-serif; font-size: x-small;">For you</span></span><br />
<i><span style="background-color: black; color: white;"><br /></span></i>
<i><span style="background-color: black; color: white;">[Andra Day: Rise Up]</span></i>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com3tag:blogger.com,1999:blog-8077827808809646186.post-542175235331151452018-07-26T04:28:00.002-07:002018-07-26T04:28:32.465-07:00The Heart Brain connectionFor all of the time I've known Rich, he has struggled with depression. <div>
<br /></div>
<div>
Yesterday I was talking to a nurse from cardiology who wanted to discuss the Holter Heart Monitor versus the Medtronics Loop Implant that Rich had.</div>
<div>
His stress test had come up with some 'abnormalities' and so his PCP had ordered a Holter Monitor for him.</div>
<div>
The Medtronics Implant recording any A-fib incidents. This could have been the causes of his stroke and TIA's.</div>
<div>
<br /></div>
<div>
The Holter would look for PVC's or Premature Ventricular Contractions. </div>
<div>
I told the nurse that he'd worn one in 2015 and the last echo was done either then or in 2012 when he was having so many problems with his anti depressants medications.</div>
<div>
<br /></div>
<div>
She confirmed that he had PVC's in 2015 and also an echo done then. She had seen that they had been done previously also.</div>
<div>
<br /></div>
<div>
I hung up the phone after our discussion. Rich would get the monitor and they'd try and figure out how often he had PVC's. I did a bit of research as a pattern started to form in the back of my head.</div>
<div>
<br /></div>
<div>
Every time Rich's anti depressants stopped working for him, he had more fatigue, dizziness, and had been pointed in the direction of cardiologists who did tests added meds because his blood pressure would fluctuate wildly,...did more tests, and generally could not figure out what the issue was.</div>
<div>
<br /></div>
<div>
What happens to the body during a period of severe depression?</div>
<div>
Any stress or anxiety sends the blood pressure through the roof, causes heart flutters, dizziness, and sometimes confusion.</div>
<div>
The brain is the master of the body organs. When the brain cannot function properly the heart and other organs cannot function properly.</div>
<div>
<br /></div>
<div>
Every single time 1998, 2002, 2012, and now 2018 there has been a pattern. The doctors of the physical being don't connect with the mental health doctors and vise versa. </div>
<div>
<br /></div>
<div>
Rich's statement, "I can't do anything, I feel weak, a bit dizzy, and feel like I will tip over."</div>
<div>
<br /></div>
<div>
When the depression meds slow down and stop working the anxiety builds. It is slow and insidious. </div>
<div>
<br /></div>
<div>
Put it all together and the pattern works.</div>
<div>
<br /></div>
<div>
I will say that the VA facility we go to have excellent doctors. Some of the very best! However.</div>
<div>
Most of the PCP docs and the psychiatric or psychologists rotate out of the VA every few years. There are no doctors that have been through even one full cycle of depression recovery and the pitfalls with Rich. </div>
<div>
<br /></div>
<div>
I've been there since 1996 and have seen a pattern develop over the years.</div>
<div>
<br /></div>
<div>
We fight the heart, dizziness, fatigue, mental stress issue with the physical doctors. Nothing seems to work as he declines.</div>
<div>
<br /></div>
<div>
The mental health doctors talk and try to adjust the current mental health medications.</div>
<div>
<br /></div>
<div>
Rich spirals downward until there is a crisis. </div>
<div>
Rich is admitted through the ER.</div>
<div>
Rich's 'team' changes his meds and monitor him.</div>
<div>
<br /></div>
<div>
Rich is discharged to home. Much better and out of that dark place. </div>
<div>
We all feel relieved.</div>
<div>
<br /></div>
<div>
We skate on a fine line holding off that dark place of depression for a while until it slowly creeps up again and takes hold.</div>
<div>
The cycle starts again.</div>
<div>
<br /></div>
<div>
There is a heart - brain connection. It is there.</div>
<div>
<br /></div>
<div>
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486942/">The Link Between Depression and Physical Symptoms</a></div>
<div>
<br /></div>
<div>
Look at the studies regarding dementia and strokes. There are studies also that research depression and its physical manifestations.</div>
<div>
Treat only the physical symptoms and the mental issues do not go away.</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
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<br /></div>
Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-52368916738503195812018-07-25T05:42:00.001-07:002018-07-25T05:42:44.124-07:00Testing, testing...Monday morning was a stress test. Working with a person who has severe depression is and can be very frustrating.<br />
<br />
I got him up early so I could get him to take a shower.<br />
"I can't, I have to lay down."<br />
This is where it gets frustrating.<br />
I put my hands on my hips and feel the anger grow. I get a bit snarky, "So why do you need to lay down? Are you dizzy, tired, out of breath..." I take his 02 levels and they are fine.<br />
In my mind that says it is the depression talking. He needs to move, he needs to keep moving.<br />
So I become the bad guy. "Your 02 levels are fine, your blood pressure is good. Do you need me to get the shower chair and help you? Are you dizzy, why do you need to lay down."<br />
<br />
I can't help myself here. I am trying to get him ready for a doctor's appointment. I tried all day yesterday to get him to shower and he was <i>too tired</i>. Yet he could watch the streaming on the small flat screen TV for 3 hrs.<br />
<br />
He gets angry with me, gives me the look, and goes to lay down. I stand in the bedroom door and fume. I look at the clock, he needs to shower.<br />
<br />
That is how the mornings go with appointments at the VA. Nudge, push, push, nudge, frustration and stress at just making the appointment on time in Madison which is 89 miles away.<br />
<br />
The stress test came back 'abnormal'. That is all the tech would say. Cardiology called yesterday morning and scheduled an echocardiogram. I wonder how abnormal is really was if the echo is scheduled nearly a month away.<br />
<br />
As is our normal routine when not rushing to get ready for an appointment, I left hay out for Rich to feed Bob and Thor. I reminded him that I had an appointment with the manager for his mother's apartment lease.<br />
I contacted the attorney who will be her guardian to get some guidance and told him that I'd bring him lunch back from The Corners Restaurant.<br />
<br />
When I returned home, he had his boots on, but was sleeping. I woke him up.<br />
I gave him his burger and fries and then asked how feeding the donkeys went.<br />
<br />
"I was too tired," came the answer.<br />
<br />
I was quiet for a bit while I made copies of the POA paperwork and arranged some papers for him to sign regarding his mother's paperwork for elderly housing. The lease would not have to be signed until she had the new guardian in effect. That was a huge relief.<br />
<br />
Finally I said, "Oh. Okay. I guess that is why they brayed when I drove in. They are hungry."<br />
I got a nasty look and he sighed. "I better go feed them since somebody wants to play psychiatrist and tell me what to do."<br />
<br />
I stack my copies of paperwork and shrug.<br />
He stops at the door, "Is it hot out?"<br />
Snarky remarks want to fly past my lips...but I press them closed and then say, "Well it isn't too bad."<br />
<br />
He feeds the donkeys and comes in with a huge sigh. "There, don't I look cured! Don't I feel awesome? Don't I want to just run up and down and be fine? Oh look I am all better!"<br />
<br />
Picture these words with aphasia and it actually is more drawn out and difficult. But I get the jist. He is angry at being made to move against his will. He wants to just go to bed, which he does for the rest of the afternoon.<br />
<br />
I gather up items to go to the forest and go fencing. In my back pack I throw some toys. I won't have time for it,....but you never know.<br />
<br />
We ... he argues with me again later after I draw out a map of how I am fencing. I tell him to get on the 4 wheeler and I'll show him.<br />
"Quit trying to be the stupid doctor, I just need meds to make my head better. If my head is better I'll be better. Just stop it."<br />
<br />
I let him blurt it all out and listen. I want to say to him that since he has gone out to feed the donkeys daily he has improved. He has anger which is better than two weeks ago when he had no emotion. He takes it out on me of course and I sit there and want to point out the good things that are small baby steps. He won't hear any of it.<br />
<br />
I finally tell him that I'm going out to the garden. I leave and am there until nearly dusk.<br />
Surprisingly he does come out of the house and onto the porch. He pulls up a chair and we are friends again as we quietly snap green beans.<br />
<br />
Oh yes.<br />
I did have a moment or two for some silliness.<br />
And it makes me laugh.<br />
<br />
Toys given to me by neighbors and other kids....<br />
why not? We all need to smile and laugh.<br />
<br />
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<br />
Testing? He tests my patience. It is a good thing I have a LOT of it.Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-6822901260695282642018-07-21T03:59:00.000-07:002018-07-21T03:59:08.505-07:00Depression 101We met with Dr. Lindsey, she is young bright and a psychologist. She is doing her stint at the VA Hospital.<br />
<br />
She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:<br />
<br />
"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."<br />
<br />
This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.<br />
<br />
Lindsey asks him if he knows what causes him to feel this way.<br />
<br />
"I don't know. I just want to feel better. I am tired of feeling like this."<br />
<br />
She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.<br />
<br />
Rich shrugs.<br />
<br />
"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"<br />
<br />
Another alphabet diagnosis I think. In medical shorthand <i>MDD</i>. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.<br />
So it was official. MDD. This explained quite a bit.<br />
<br />
Lindsey continues, "So Rich I am here to help you figure out how to <i>feel</i> better and break this depression cycle."<br />
<br />
He looks at her and squints again. "I have no idea how you think you can do that."<br />
<br />
She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.<br />
<br />
It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.<br />
<br />
Lindsey draws a map for Rich to explain what she is talking about.<br />
<br />
"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."<br />
<br />
He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."<br />
<br />
She thinks a moment and then asks, "Are you a fall risk?"<br />
<br />
"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.<br />
<br />
Lindsey draws out something on paper and shows it to him.<br />
<br />
[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]<br />
<br />
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<br />
"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."<br />
<br />
He stares at the paper and I know he doesn't <i>see</i> it.<br />
<br />
The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? <i>I reply we'll have 02 along</i>. What if he gets tired? <i>We have seats in the Subaru that recline</i>. What if he can't ... make it to the car? <i>We bring fold up chairs.</i><br />
<i><br /></i>
Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]<br />
<br />
Then Lindsey does something surprising.<br />
She turns to me and asks, "How are <i>you</i> doing?"<br />
<br />
"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."<br />
<br />
"What sort of support do you have?"<br />
<br />
"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."<br />
<br />
"Would you consider counseling?"<br />
<br />
"Can't afford it now that I quit work to take care of Rich." I state.<br />
<br />
Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.<br />
Lindsey says she will look into it. I believe she will.<br />
<br />
Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.<br />
<br />
When we get home I tell him that he will feed the two donkeys every day like he used to.<br />
<br />
He fires back at me: What if I can't make it? What if I can't walk there and back?<br />
<br />
Me: Then I will sit with you in the dirt until you can make it.<br />
<br />
Him: What if I get out of breath?<br />
<br />
Me: I'll bring you oxygen.<br />
<br />
Him: Oh like this is going to cure me huh?<br />
<br />
Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.<br />
<br />
Him: I'm going to bed.<br />
<br />
Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.<br />
<br />
Depression is an ugly thing.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com4tag:blogger.com,1999:blog-8077827808809646186.post-76699014678058483402018-07-14T06:57:00.000-07:002018-07-14T06:57:26.589-07:00Offering some hopeWe met with Rich's PCP...Primary Care Provider this week.<br />
<br />
She is one very straight forward person and she also tells you like it is.<br />
<br />
"How are you today Mr. Ewing?"<br />
<br />
Rich shrugs. "I'm dying bit by bit."<br />
<br />
She answers, "We all are, but I understand how you are feeling. Your meeting with Neuro-psychology flagged you for severe depression. We need to turn that around as quickly as possible."<br />
<br />
Rich stares at the floor and then something far away. "Nothing can make me feel better, I just want to feel better once, you know?"<br />
<br />
She nods. "Of course you do! I've put in a call to your psychiatrist and he needs to review you AND see you ASAP."<br />
<br />
I interject. "I wonder if his meds don't work any longer. Rich has a history of his medications for depression working well for about 6 to 8 years...and then..."<br />
<br />
She nods and types swiftly, "You are absolutely right. We may end up with a different regime of meds. And speaking of that we are going to stop the Tamulosin right away. I think you have had nothing but poor reactions to it..."<br />
<br />
I pipe up. "I know Rich doesn't want this, but can we look at oxygen therapy? Lately he can't function very long without going back to lay down with his CPAP and 02. He feels extremely fatigued and 'out of it'."<br />
<br />
She nods sand turns to Rich. "We will test you, and your heart, your lungs are not elastic so you may need oxygen to keep from damaging your heart, lungs, and brain further. Are you open to that?"<br />
<br />
Rich makes a face.<br />
<br />
Doctor pats him on the back and says, "Struggling to think, to walk, to breath, is no fun. This will help."<br />
<br />
I point out that since he spends up to all but 4 to 5 hours a day with his CPAP and 02, that he is already ON oxygen. She agrees and I see Rich make that connection.<br />
<br />
He asks about the aneurysm. She looks at it and says, "If they want to do it, go for it. IF you go in alive you come out just fine." She is not being cavalier, just straight forward.<br />
<br />
She types some more.<br />
"I'm ordering a stress test for your heart. I'm putting in for an immediate re-eval of your psych meds."<br />
<br />
Then she turns to him. "You know, you are dying, we all are, but I think we can make some adjustments so you don't feel so depressed, so tired, and so frustrated.<br />
I'm going to put you on Aricept for your dementia. I see you will be visiting speech therapy, OT, and cognitive therapy."<br />
<br />
She raises her hand and draws a line. "I want to hold you here for along time. Mr. Ewing, you will live and you will feel better. You have a good partner and wife, she is looking out for you."<br />
<br />
We leave and I think we both feel a bit of hope.<br />
<br />
Is it real hope? I believe so. Because not believing it is not going to help us.<br />
Hope always helps.<br />
<br />
<br />
<br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-74428696744675642492018-07-10T05:47:00.001-07:002018-07-10T05:47:25.857-07:00The letter & AppointmentThe letter regarding Rich's test results with Neuro-Psychological testing came today.<br />
The letter diagnoses Rich with a major neurocognitive disorder called 'dementia'. The severity is considered mild at this time.<br />
<br />
The letter goes on to list the main causes of his diagnosis. In some ways I am glad the list is there and in some ways I find it offensive. In one hand I knew that his health issues are all contributors to his 'Vascular Dementia' however having it printed out in black and white seem to be a shock.<br />
<br />
Depression and PTSD are major contributing factors but cerebrovascular disease are the main causes. Yes, I knew that.<br />
The facts are there.<br />
<br />
I asked Rich if he wanted to read the letter. He waved a hand at me. "You read it, you can understand it."<br />
So I read it.<br />
The recommendations are fairly straight forward. Exercise, quit chewing tobacco [he is trying when he remembers], eating healthy [we mostly do], speech therapy, language therapy to help practice communication skills, and thinking skills.<br />
<br />
Exercise. He preaches it to his mom. And when I ask him to do something physical -- he can't or is it he won't? I think it is *he cannot*. He says that he feels exhausted at all times. He says he can't, he can't do it. Over and over. If I push for him to do something physical he gets angry and goes to bed.<br />
I get tired of pushing and asking him to help.<br />
<br />
<br />
During the afternoons now, he watches Netflix and sits on the edge of the couch with the volume turned up nearly as high as it can get.<br />
I can't go back and change his lifestyle that lead to this place we are at now. I can only try to deal with it one day at a time.<br />
<br />
Yesterday we had an appointment with Neurosurgery. We were nearly late when we arrived at the VA so I hustled us to the floor where we'd seen Neurology last year only to find out we were in the wrong place. Again, we rushed down to clinic B.<br />
<br />
After the vitals were taken [his blood pressure was high] we were ushered into an exam room.<br />
The doctor sat down and I innocently asked why we saw him in this clinic rather than the clinic upstairs.<br />
He very pointedly told me that HE was <i>Neurosurgery [</i>emphasis on surgery<i>]</i>. Upstairs was Neurology, they were vastly different.<br />
<br />
I explained that we thought we were there because he was supposed to see <i>Neurology</i> for a follow up in one years time. [Emphasis on Neurology]<br />
<br />
He batted an eye and then asked Rich if he knew what he was here for. Rich glanced at me and then the doctor. He shrugged. "Because of my brain?"<br />
<br />
The doctor launched into his spiel. "The CT scan you had done a few weeks ago show a change in your brain aneurysm. We are here to discuss ways of dealing with that. Did you know you had an aneurysm?"<br />
<br />
Rich glanced at me. I answered, "Yes Dr. Kabbani who did the surgery to clear the clots in his brain told us that last year in May of 2017. The neurologist that we saw last year at the VA also reviewed it at the time. The aneurysm is in the Circle of Willis and it is a fusiform aneurysm. We were to follow up with <i>Neurology </i>one year later."<br />
<br />
Rich added in his halting aphasia way that he knew the Doctor had to go in more than once to get stuff out and that his thoughts and words were scrambled.<br />
<br />
The NeuroSurgeon turned and began typing rapidly. He started to read Rich's history. I pursed my lips. This doctor hadn't done his backround on his patient. My confidence level in him changed. What happened to cause this appointment? Did he note that Rich had a rare aneurysm? One that would be an <i>interesting case</i> to 'fix' surgically? The doctor was a UW Madison doctor, the UW is excellent and is also a teaching hospital.<br />
<br />
Finally he turned back to us and said, "I see, last year you saw Dr. ---- in Neurology and he consulted with Neurosurgeon ... Dr. ---- and that doctor said nothing needed to be done at that time."<br />
He frowned and then continued, "I'll put a call into Dr.----- and see what he recommends for this change in your aneurysm."<br />
<br />
Rich stared at him and then the doctor pulled out a sheet of paper and explained to Rich what his odd and rare aneurysm looked like and how difficult it could be to 'fix' because it was between two major arteries that fed the brain.<br />
<br />
"We may need to do an angiogram or another CT...," he went on, "..and then make some decisions..."<br />
<br />
He made a quick exam of Rich and his reflexes then asked a few questions. He then reiterated that he'd let us know what was going on.<br />
<br />
I stood and looked the doctor in the eye. "You do understand that my husband has been recently diagnosed with Vascular...." I let my words fall off.<br />
He nodded. "I read that."<br />
<br />
"You have read his history and health then right?"<br />
<br />
The doctor nodded.<br />
<br />
I don't think he really had. I think he saw an opportunity to see and possibly do surgery on a rare case. I think Rich's brain was of interest to him. His demeanor was not compassion for the whole person.<br />
I decided that I didn't like him at all.<br />
<br />
We left with no plan of action and we felt as if we'd been broadsided.<br />
<br />
On our way home Rich said, "My life stinks. I have no life. I don't think I want that guy inside my head."<br />
Me: Then he won't be.<br />
Him: I mean what if the thing blows up? I mean what if he fixes it and I keep on living like this?<br />
Me: Well he didn't really end up talking surgery, but I wonder what the risks are.<br />
Him: Me too. What if he scrambles me more.<br />
Me: Won't happen. I won't let him in there if those are your wishes.<br />
Him: I'm dying a little at a time anyway. I'm so depressed.<br />
Me: <i>Silence</i>.<br />
<br />
Him: Do you suppose I can go to the doctor just ONCE and get some good news?<br />
Me: <i>Silence again.</i><br />
Him: What next?<br />
<br />
Rich reclined the seat and went to sleep while I drove.<br />
I thought about the letter and how we were supposed to push and pull, exercise, OT/PT, mental exercises, ....push push push.<br />
<br />
Indeed.<br />
What next?Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com3tag:blogger.com,1999:blog-8077827808809646186.post-53948855563070499722018-06-21T06:23:00.001-07:002018-06-30T12:44:28.221-07:00I am Nowhere.<span style="font-family: "trebuchet ms" , sans-serif;">So on the last check up with ENT a week ago there is still no re occurrence of cancer. Everything looks 'good'. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">We both sighed at that thinking soon the endless appointments and follow ups regarding the dreaded 'C' word would slow down to a six month break.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">However Neuro-Surgery called and scheduled a CT scan to check out Rich's brain and to see if there were any changes to his brain aneurysm. After we got home a Neurosurgeon called to let us know that no significant changes had occurred but we were still scheduled to see them for his one year follow up.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">The results from the tests with Neuro-psychology were in. Cognitive Disorder...Vascular Dementia. The full results will be mailed to us in two copies. One for Rich and one for me.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">I think they will write up and include their recommendations. There was almost too much information given at our meeting of nearly 90 minutes.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">My take away was the following.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Are POA's in order? Yes.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Driving? That will be addressed with OT/PT.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Could I now prepare his meds? Yes.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">They are ready to invoke POA for Medical as they don't feel Rich can make decisions for himself.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">I did explain that all of our decisions were made together and had been since he'd had cancer. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">The best thing I liked about these doctors is that they looked Rich right in the eye and explained things to him. They also confirmed that I understood what was going on.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">I'd already had an inkling of the possibilities before the appointment.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">The signs were all there. The confusion, the far away looks, the getting lost in 'No Where Land' as Rich had told me over and over again. The lack of ability to make an easy decision like to call to have his truck fixed, or to arrange to have some cattle shipped is now beyond his reach and thought process.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">As I explained to our Farmer Friend, I wanted to let Rich feel like he was making the call, that he was still in charge. But I realize now that he may not be capable any longer. He has become mostly apathetic to what is going on around him.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">It seems that decision making is too difficult for him. I've resisted that thought, I've resisted that conclusion and I had even decided that Rich was just too lazy or unconcerned to make these important decisions. I'd leave a phone number in front of him to call for his truck. He'd push it away and not look at it. I nagged, cajoled, and begged for him to call.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">I got an irritated look in return and then nothing.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">The shock for me is that it was there in front of me and I didn't want to believe it. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">Yesterday morning I felt lost. I felt panicked with the sudden realization that indeed my world had flipped again and so had Rich's. He was slowly drifting away into a place where I couldn't find him.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">He can sit and have coffee with me in the morning. But I look at his face and find him not there.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">His eyes are blank.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">I ask him what is on his mind. And he blinks, then looks at me with a question on his lips and says, "I am nowhere."</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="background-color: white; color: #333333; font-size: 14px;"><i><span style="font-family: "verdana" , sans-serif;">My husband is leaving me. No dramas, no slammed doors - well, OK, a few slammed doors - and no suitcase in the hall, but there is another woman involved. Her name is Dementia. ~~ Laurie Graham.</span></i></span>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com4tag:blogger.com,1999:blog-8077827808809646186.post-71241645597968374282018-04-25T05:34:00.000-07:002018-04-25T05:34:19.618-07:00Brain Drain<span style="font-family: Verdana, sans-serif;">Dementia with Behavioral Disturbance, unspecified dementia type</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">This is the Primary Diagnosis for my Mother in Law.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">What does this mean?</span><br />
<span style="font-family: Verdana, sans-serif;">According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.</span><br />
<span style="font-family: Verdana, sans-serif;">Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.</span><br />
<span style="font-family: Verdana, sans-serif;">If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.</span><br />
<span style="font-family: Verdana, sans-serif;">She spent the last two weeks with MIL, seeing how she'd fare in her apartment.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.</span><br />
<span style="font-family: Verdana, sans-serif;">So she may not realize that a Monday has arrived and needs that help.</span><br />
<span style="font-family: Verdana, sans-serif;">Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sometimes she has trouble telling day from night.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I signed up for an 8 hour course at <a href="http://alz.org/">ALZ.org</a>, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. </span><br />
<span style="font-family: Verdana, sans-serif;">One wouldn't think that Kidney issues would affect the brain, right?</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">One step at a time, just like our journey through cancer and stroke.</span><br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-16829865550881628402018-03-24T05:30:00.000-07:002018-03-24T05:30:44.666-07:00Elder Care I thought I'd toss this in here as I really don't want it on my regular blog.<br />
<br />
On the first weekend of March my mother in law who turned 87 on the 12th fell in her apartment and couldn't get up.<br />
Rich's daughter and son in law found her on the floor.<br />
<br />
She didn't want to go to the hospital but the EMT's did convince her to go.<br />
<br />
She has severe edema in her legs and feet. Since Christmas, I've been trying to get her to go to her doctor and address those issues. MIL wasn't receptive to going to her physician or any doctor. She figured that she'd be just fine.<br />
<br />
After nearly 20 days in rehab at the local nursing home, she is walking with a walker and moving about quite well. The edema has not gone away. In stage IV of chronic kidney disease, I don't think it will. PT and OT have improved her mobility and strength. We got her some special shoes/slippers for people with swollen feet. She hasn't been able to wear regular shoes since December.<br />
<br />
We've discovered that MIL has some memory issues. The nursing staff is attributing that as to the reason she probably fell. MIL had a system for taking her meds but the general consensus is that her memory failed her and perhaps mixed up her medications.<br />
She hadn't been eating regular meals, picking up after herself, or bathing either. I was desperate before the fall. She needed care and refused to get it. Or..simply forgot.<br />
<br />
Here is the twist. There is no way of forcing someone to get medical care. However once she was admitted, two doctors invoked her POA of Healthcare. That meant she was not capable of making medical decisions on her own behalf.<br />
<br />
It also threw in another terrible twist. She had never set up a POA for her financial matters.<br />
If Rich had not been on her checking and savings account, her bills could have gone unpaid.<br />
There are limitations.<br />
Since MIL had not been taking care of her debts and some odd trends in spending for months...with no POA for Finances, we are helpless to take care of those things.<br />
Once she returns home, if she is deemed no longer in need of a POA, she can do as she wishes.<br />
She can <i>not</i> go to her appointments, she can choose <i>not </i>to pay her bills, and she can choose <i>not</i> to ask for assistance.<br />
<br />
Legally? There is very little we can do to assist her without her approval.<br />
<br />
The laws were set up to protect the elderly and I get that. I want to afford her all the dignity she needs. But.<br />
I am at a huge loss as...a daughter in law as to how to assist her.<br />
<br />
The nursing home is setting up an alarmed medication box for her to take her meds properly. MIL is resisting that saying she can take them just fine.<br />
<br />
I hope that the med box works out and we can convince MIL to use it. I hope we can convince her to continue to exercise once she gets home too.<br />
<br />
This is my first experience with caring for an elderly parent. What an incredible maze of paperwork, forms, and legal restrictions to jump through!<br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-11763349903092952782018-01-16T05:15:00.000-08:002018-01-16T05:15:26.253-08:00No Easy Answers <span style="font-family: Verdana, sans-serif;">We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. </span><br />
<span style="font-family: Verdana, sans-serif;">Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as '<i>No Where</i>'.</span><br />
<span style="font-family: Verdana, sans-serif;">He visits No Where quite often these days.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">When we come back in, he sits and stares off into No Where. Eventually he says that he *<i>is not worth a damn</i>* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors". Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.</span><br />
<span style="font-family: Verdana, sans-serif;">NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. </span><br />
<span style="font-family: Verdana, sans-serif;">Rich does stay as active as he can.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. </span><br />
<span style="font-family: Verdana, sans-serif;">He feels somewhat hopeless and helpless. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I find it interesting that the doctors say: You are doing so well! <i>You made such a miraculous recovery from all the things that have been thrown your way!</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.</span><br />
<span style="font-family: Verdana, sans-serif;">One counselor asked him to consider the fact that this would be his new normal.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I understood where she was going. <i>Accept this and move forward.</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I may be the type of person who can do that. But he can't.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Before I get told to rush him to the ER. I have. The results have not been exactly stellar. </span><br />
<span style="font-family: Verdana, sans-serif;">To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Is there an easy answer to all of this? No.</span><br />
<span style="font-family: Verdana, sans-serif;">Of course not. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
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<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-14214358211333782342018-01-06T05:56:00.003-08:002018-01-06T05:56:38.026-08:00Finding ResourcesADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called <a href="https://eldercare.acl.gov/Public/Index.aspx">Eldercare Locator</a>. Simply type in your zip code and a list pops up on the next screen with what is available in your area.<br />
<br />
I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.<br />
Nope, that doesn't work.<br />
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.<br />
Nope, that doesn't work.<br />
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.<br />
Nope, that doesn't work.<br />
<br />
<br />
Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.<br />
<br />
I know, that sounds awful doesn't it?<br />
I've convinced Rich that we'd even try the Memory Cafe in February.<br />
<br />
We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.<br />
<br />
My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.<br />
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.<br />
<br />
Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.<br />
She could get help from the state and county if her assets were two thousand or less.<br />
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.<br />
<br />
It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.<br />
I know we had approached Mom to get in touch with ADRC more than once and she said no.<br />
Now we have to tell her that WE will get her the help. I hope she takes it.<br />
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.<br />
<br />
A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.<br />
<br />
We will be going to her apartment today or tomorrow and presenting her with the option of some help.<br />
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...<br />
<br />
Anyway.<br />
I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.<br />
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.<br />
<br />
The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.<br />
Are you ready for the huge amount?<br />
Nearly $30 per week!<br />
<br />
I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of <i>him</i>.<br />
<br />
So I am leaving anyone who reads this with a few thoughts.<br />
<br />
Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.<br />
Do your research now.<br />
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-22041478220068895542017-12-28T09:30:00.000-08:002017-12-28T09:30:35.027-08:00Severe cold and Depression SuckIt used to be that you didn't dare use the word 'suck' in your writing as it would offend someone, somewhere. However our world has changed a bit now hasn't it?<br />
<br />
I contacted ADRC which I said I would but only because things sort of came to a screeching 'whatchyamacallit' this week.<br />
<br />
The cold weather has taken its toll on Rich. He has such a hard time with subzero temperatures. I've let him do what he could so far this winter. However since I knew things were going to get very cold, I moved the second batch of cattle into a larger area and we put out a bale feeder. Now they can all feed at their comfort and drink from one large heated stock tank.<br />
Clap clap clap, hurray for me!<br />
There are still 3 places to carry water to and if I do it with small buckets and make more than one trip, I can get it done by myself.<br />
<br />
We got the house all spiffed up for the 'kids' to arrive. Arranged for mom in law to come over. We planned how we'd pull up right next to the one little step and lay out a non slip rug...we even discussed having 'spotters' for her.<br />
I bought a cover for the couch instead of the old ugly looking thing I've used forever. It actually looks nice and Morris loves it.<br />
<br />
Rich was having such a hard time with being outside I got up early and took care of all of the chores. I gave the hounds new bedding and heaped up the wonderful smelling pine shavings. They were grateful as could be.<br />
I pried the fodder bales with a pitch fork and the cattle seemed to smile at me.<br />
<br />
Then the phone call. The 'kids' couldn't come. When Rich hung up the phone it seemed as though his face had *transmorgified* yeah...not a word, but there you are. The light died out of his eyes and he announced that he was going to bed.<br />
<br />
Later that day we talked.<br />
Him: Why can't I do anything?<br />
<br />
Me: What can't you do?<br />
<br />
Him: I can't do chores, I can't breath, and... maybe...<br />
I waited.<br />
<br />
Him: Maybe I'm depressed. Why am I like this?<br />
<br />
Me: [<i>I clutched my hands together below the kitchen table</i>] Well, throat cancer took its toll, the stroke has not been an easy thing to over come. You look good, you look fine, but...with what you have been through in the past two years? It has beaten the crap out of you.<br />
<br />
Him: You are saying I'm [<i>he stops, looking for a word as he often does...</i>] having get to older.<br />
<br />
Me: Well, I am getting older also. [<i>I understand so much of what he wants to say, however it is often the same conversation each day now.</i>]<br />
<br />
Him: You aren't like that. You are going to getter.<br />
<br />
Me ~ I stand up and hug him. His speech gets very garbled which indicates his frustrations and sadness. This is how he is now.<br />
When he gets upset or down, he loses words and thoughts.<br />
<br />
Me: I do love you.<br />
Him: I'm going to nap.<br />
<br />
Well I sit down and compose an email to our local ADRC [Aging Disabilities Resource Center]. I ask for help, I ask for some tools to deal with my husband.<br />
<br />
I want to hug him, I want to yell at him. I want to hold him and I want to throw things.<br />
I need to stay healthy and sane to help him.<br />
<br />
I write a note to self. Call his doctor at the VA. Is it a bigger COPD issue? Mental health issue? Physical issue? How can I make his days more meaningful? How can I help him day to day and not lose my temper.<br />
<br />
Perhaps Tricia can help. We will be meeting on the 3rd at 1PM.<br />
I know I won't find the answers to everything, however I will be able to go in some sort of direction.<br />
<br />
<br />
<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0tag:blogger.com,1999:blog-8077827808809646186.post-82570622530989309102017-12-17T05:37:00.000-08:002017-12-17T05:37:56.406-08:00The End Game<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlaCtJtoTJHclrnqngYoAurNVr-DA4VsvnSehcUxoTyHovG7H_0rrOsvYFfuo6lzvT76_2McxokLt_HXSbCQHDbFrJERn3xvdEKq_oFv5odKhW6seYua-vnTY7lZdT_6GzT_G10FgQ3wM/s1600/5+17+Richbw.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlaCtJtoTJHclrnqngYoAurNVr-DA4VsvnSehcUxoTyHovG7H_0rrOsvYFfuo6lzvT76_2McxokLt_HXSbCQHDbFrJERn3xvdEKq_oFv5odKhW6seYua-vnTY7lZdT_6GzT_G10FgQ3wM/s320/5+17+Richbw.jpg" width="213" /></a></div>
Well here we are. The last entry in this blog was 8/16/16.<br />
Rich had just completed one of his last check ups with the oncology department.<br />
<br />
Let's jump forward to present date.<br />
12/17/17.<br />
On May 6th Rich had a stroke.<br />
I wrote about it afterwards on <a href="https://mulewings.blogspot.com/2017/05/new-beginnings.html">May 12th</a>.<br />
<br />
I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.<br />
He is an amazing man.<br />
<br />
Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?<br />
<br />
I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.<br />
<br />
<i>Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.</i><br />
<i>Retired: Ceasing work. Having finished one's active working life.</i><br />
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I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.<br />
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.<br />
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I had felt that I'd be able to return to some sort of work by now. But that isn't happening.<br />
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Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.<br />
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.<br />
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So what is our next Long Road?<br />
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Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.<br />
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One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.<br />
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So I will continue to write things here regarding how we deal with health issues and the end of life.<br />
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<br />Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com2tag:blogger.com,1999:blog-8077827808809646186.post-42739628509759035522016-08-16T04:13:00.000-07:002016-08-16T04:13:10.237-07:0014 Month post Cancer follow up<span style="font-family: Verdana, sans-serif;">Today is the 14 month post cancer follow up. </span><br />
<span style="font-family: Verdana, sans-serif;">Cancer.</span><br />
<span style="font-family: Verdana, sans-serif;">That word still lingers in the back of our minds lurking as we continue to go through appointments with ENT, CAT scans, and mild scares from 'something showed up' we need another scan.</span><br />
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<span style="font-family: Verdana, sans-serif;">To...<i>it was nothing.</i></span><br />
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<span style="font-family: Verdana, sans-serif;">However the good news is that Rich is doing better and he has this behind him. </span><br />
<span style="font-family: Verdana, sans-serif;">He also told the doctors that he wouldn't ever go through treatment again. I know he is solid in those thoughts. Chemo nearly killed him and he reacted so poorly to it. </span><br />
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<span style="font-family: Verdana, sans-serif;">I'm hoping that our follow up visit will be another one where Dr. Witek slaps him on the back and tells him he is doing well.</span><br />
<span style="font-family: Verdana, sans-serif;">We may have passed that magical one year date and now look forward to a 5 year prognosis.</span><br />
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<span style="font-family: Verdana, sans-serif;">Statistics show that if the cancer is to return, it will in the first year...or within 5 years.</span><br />
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<span style="font-family: Verdana, sans-serif;">So we still live with a cloud over our heads. However that cloud feels pretty distant at this time.</span>Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com1tag:blogger.com,1999:blog-8077827808809646186.post-4321841253029176042016-03-25T06:41:00.000-07:002016-03-25T06:41:33.016-07:00Follow ups and follow ups never end.<div class="separator" style="clear: both; text-align: center;">
<a href="https://c2.staticflickr.com/4/3188/2793375813_ef495cd8f3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="215" src="https://c2.staticflickr.com/4/3188/2793375813_ef495cd8f3.jpg" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Archived Photo</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>One thing seems to keep leading to another. We finally got seen by the surgeon who would do the 'eyelid' lift to increase Rich's vision.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>After examining him and then calling in another doctor, the decided they wouldn't do any eye surgery until he saw Dermatology. They poked and prodded around his face and asked many questions.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>History of skin cancer? </i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>NO.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Anyone in the family have skin cancer?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>NO.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>A lot of sun exposure as a child?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>YES.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Chemical exposures?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>YES.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i><br /></i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>"We can't do the eye lid surgery until after dermatology does surgery on these multiple areas."</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>The doctors poked on his face some more and then their fingers brushed his forehead. </i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>"We may have to use all this nice excess skin to make skin grafts to cover up scarring. Dermatology will use the Moh's Method to take out the lesions and depending on how deep they are well, that will determine the scarring."</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i><br /></i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Rich shrugged. I cringed. I'd seen photos of the Moh's Method and well, it was not pretty but usually it healed up quite nicely. Multiple spots? To not do surgery was inviting the cancer to spread and kill him.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>I wondered how long had those spots been there? Of course it wasn't something that a normal person would recognize as cancerous.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Cancer.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Hate hate that word.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i><br /></i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>We ended this appointment with a promise that Dermatology or Derm, would call and set up an appointment.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>We are now one year an 12 days out of the Throat Cancer diagnosis.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>More on that later.</i></span></div>
Val Ewinghttp://www.blogger.com/profile/11773318159420863765noreply@blogger.com0