Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult. 

Anticipatory Grief part II

 I wrote a blog about Anticipatory Grief on March 2, last year. I'd never really heard about it until there was a remote class via the VA Caregiver Social Workers last year.

It wasn't exactly a 'happy' post, more of a reflection of what I thought I knew and understood about the term Anticipatory Grief. I'm glad I did the class. I also thought I'd had it all figured out. 

Insert a big laugh right here. I like to think I can handle all things tossed at me. 

Well, things have changed radically. I actually have adapted I think fairly well. I knew I could possibly enter a phase where I had to do most everything for my husband. The damage to his memory and thinking skills are now more evident from his resp. failure. 

Shay, who is a young single mom and our respite gal said she and Rich had good conversations and that he seems to be okay with what is happening to him. He seems settled and at peace with it.

She then asked me how did I feel?

I said I was good with it. After all, Rich and I set up our Estate plans and Living Wills in 2012 and we had these discussions about aging and illnesses before he had cancer in 2015. The doctors will argue that his cancer treatment gave him at least 10 more years of life.

What didn't happen is good of quality of life. Doctors would point out that he was still 'here' and that he was able to visit with family. The cascade of issues that followed in the next two years took everything he lived for away from him.

Living day to day became a struggle combined with Major Depressive Disorder. His PCP told him not to feel sorry for himself as there were others worse off than he was.

[Yes, she said that and I immediately asked to be transferred out of her care.]

That is when we transferred to Palliative Care. His issues were dealt with and no shaming for being depressed or feeling hopeless. No intrusive exams. Pain management and mental health support were vital to him.

We stayed with the Palliative Care Team for 6 years.  

So back to the question. How was I dealing with the fact that we were now in Hospice Care. My mantra was 'I'm good with it.'

I understand the implications. I understand that my soul mate is dying. I also wonder what happens after. 

Wait.
I lose half of me in a way. We've been partners for 30 years. We've been part of each others lives for that long. For the past 10 I've been his 'Care Giver'. For the past 30 my life has been helping him negotiate his daily life which included many times in and out Mental Health Admissions. 

I was once asked why I'd hang around someone like him. My reply was pretty simple. He is an honest man, he loves intensely, he has a true heart, and he doesn't play games with people's emotions. And. He is my partner.

So.

While driving to town to get some groceries two days ago, a song came on the radio.  I don't recall what the song was. But I did have to find a spot to pull over. I parked on a side road that overlooked a trout stream.

It hit me.
Yes, I am prepared. Maybe. I am prepared for what happens and the process of his dying. 

Maybe I am not prepared for the 'afterwards'. 

Weekends in hospital

The weekends in a hospital are not exactly full of useful info. I mean a doctor looks in and does their thing.  

What I wish for is a heart to heart conversation, but Dr. P and I sort of had that on Friday. The Living Will and DNR papers are active for now. If he were to go home and come back, I'd have to make sure they know those papers need to be activated as every time a patient comes in, they are considered a Code patient. Meaning, they will save the life if at all possible.

This is pretty good information to know.

Her opinion was 'wait and see'. 

He did have a minor improvement in being able to breathe. Not enough to come off the High Flow Therapy. It is specialized equipment meant for those who have orders not to be put on a ventilator or a DNR order. However, according to studies, dramatic improvement happens in 24 hrs.

That drama has not happened. 

Rich and I discussed trying to find out Monday if he can somehow be put on Hospice at home to pass away. He doesn't want to fight and he doesn't want to stay in a hospital.

Saturday was pretty quiet at the hospital, I sat and read and spoke to the nurses who were all kind and very positive. Apparently Rich is a favorite patient as the nurses quibble over who gets assigned to him for the day. Steroids, antibiotics, and lots of nebulizer treatments all day, all night are what he has going on. 

Rich and I were able to have time to talk about things and his wish is to be able to get off the specialized equipment and to come home with Hospice involved. That would mean visits by a nurse at home and no re-admission with his next exacerbation of his COPD.

The goal for the weekend was to transfer him to a recliner and see if he could tolerate a reduction in the high flow therapy.

Sunday was interesting. Rich's ol' fishing buddy came to see him. While the two visited [Steve said Rich just slept part of the time], I met up with my Legend Girls for coffee for an hour. We chatted and told funny stories and talked about places we'd dreamt about visiting.

I spoke with his Resp. Therapist in the hallway and asked her if she thought he'd be able to come home with Hospice. I told her that we'd discussed it. She said that was an excellent program for him and his wishes. 

When I came back from coffee time, Rich's daughter, her hubby, Ariel, and Steve were all in the room. 

Since Steve was ready to leave, I took the advantage of that. Ariel and I went home to take Charlie for a nice long walk on our gravel road so he could do his doggy stuff. 

On the way back in...I  stopped to see the nurses. The daughter, her hubby and a surprise visit from our friends in Missouri had all visited but had gone out to lunch.

The nurses said Rich was exhausted. They put a Quiet Time sign on his door and I texted all visitors that Rich was not going to see anyone from lunch until at least 3 or 4pm, they had to see me first in the family waiting room.

So the end result of Sunday was that a lot of folks came by. He did get in the recliner. They did reduce the airflow on his High Flow pillow cannula and he did seem to have a slight improvement in breathing. 

He actually ate 3 bites of an omelet at breakfast, drank water, had a milkshake for lunch, and had half a little burger and a milkshake for his supper.

Monday. Today, I hope to get some sort of directions from a doctor as to whether our plan and goals are even doable. I will be calling the VA Social 'Miracle' Worker to see what our options are through the Veteran's Administration.

The Missouri folks will stop in shortly to see Rich this morning and then they will head home.

Tuesday afternoon we have a Winter Storm Watch with blizzard conditions possible, high winds, and either rain and snow for us or 6" of wet heavy stuff.
If I am forced to be home through the storm, I will catch up on rest, and get the laundry folded.

I have to include this in my update for this morning. People and neighbors are incredible. 

There were visits to Charlie, there was prepared food put in my frig, and groceries left on my counter. This all done just because.

What Is Anticipatory Grief?

 Anticipatory Grief is something that can begin before the person you know has died. 

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. [Whoever has had cancer in a loved one or family member will know that the C word changes things forever] 

The event started a cascade of other health events that compounded on Rich's COPD. 

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. 

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. 

Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give give and give 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.

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. 

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. 

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. 

He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.

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.

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."

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. 

IF this happens, what is my next step? 

Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. 

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.

There is no cure for his diseases but a release of pain and suffering when the time does come.

And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. 

What will I do?

Will I feel whole or half?

This is a Long Journey

In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. 

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.
He also has COPD. According to the medical notes on file, it is Stage 4.

The doctors think he is amazing as he has really beaten the medical odds. 
He also has MDD which is treatment resistant. [Major Depressive Disorder]

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.

These things are not really important. NOT to me. What is important to me is quality time together.

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.
His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.

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. 

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. 

He is tired. Tired of not being the productive go get 'em 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.

We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'

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.

His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. 

We are marching towards the end in a steady fashion. 

While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.

His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.

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. 

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.

Just let me go. 

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.

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.

So we wait until next week and see how the morphine goes.

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.
To me? 

Priceless.

Moral Injury or Tortured Soul?

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.

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 Moral Injury-the VA's extensive write up.

The DAV also has an explanation part of what I will copy and paste below.

Symptoms:

Persistent Negative Emotions – 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.

Reliving the event – 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.

Avoidance – 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.

Trust Issues – 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.

Drug/Alcohol Abuse – 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.

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. 

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.

I asked if I could help explain it. Sarah game me the nod.

I reached over and asked Rich where it hurt. 

Everywhere, I hurt all of the time. It hurts to think, to breath, to exist. [Not an exact quote because he has aphasia and word finding difficulties]

I touch his chest, his arm, the side of his head and ask him if it hurts so bad internally that it is unbearable.

Yes, it is unbearable inside my head inside my ... his hand flutters to motion to his chest and body.

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?

He nods and tears begin to flow. He gasps and sighs and drops his head. He mumbles that he is not worthy.

Sarah nods at me and we continue. 

She asks if he will see a Chaplain, if he is open to trying something different to ease his emotional and physical pain.

He is not sure. However, I ask him what does he have to lose? Why not?

He asks Dr. Eskola if he can't just get pain meds to make it go away?

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.

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. 

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. 

He has a hard time wrapping his mind around it.

It sounds like Hocus Pocus and he has lived with this pain so long that it is a part of who he is. 

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?

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?

I ask Why Not?

Why not calm the tortured soul within to be able to find a bit of peace?

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.

And we prepare again...

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.

What it is like living with MDD, COPD, PTSD, and the after effects of a major stroke, cancer, PE, and other health issues. 

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. 

Really, let's not laugh too loudly. 

No. 

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.

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. 

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.

He tried that once before when he had cancer and didn't really stick with it. 

Palliative Care 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.

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.

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.

Depression can become so painful and so deep that it causes every pore and every fiber of your body to hurt.

Combine this painful depression with major health issues, and you have a messy cauldron of mental and physical pain.

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.

His main goal is pain meds which his regular doctor seems to be against. He other huge concern is NOT going to a hospital. 

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.

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.'

Years ago, I sort of agreed with her. He did make mountains out of mole hills it seemed. 

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. 

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.

That is probably an oversimplification, but in layperson terms, that may be the only way it can be expressed. 

I am known for being honest and straightforward with no bullcrap. 

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.

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. 

How many times has a medical professional sat me down in a quiet room to tell me the worst news. Too many times.

How many times have I driven him to the VA to be admitted to the mental health ward? So many times. 

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.

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,

perhaps, they would have a different viewpoint.

And so we prepare for the next chapter.

I hope to have some updates after next week.

Palliative Care Visit Two

From my written journal ... Palliative Care Visit November 24th.

 I think I need a break some days from being a Caretaker.  We met with one of the Fellows — meaning a Doctor who is going to specialize in Palliative Care after he is done with learning and applying his knowledge in a setting like the VA Hospital.

Doc Fellow wanted to know what was on Rich’s mind today.  Well let’s say this,  this Fellow didn’t really know Rich and so asking him that question would lead to a conversation that had nothing to do with Palliative Care.

Rich needs someone to direct and focus him.  So Rich talked about the pain from where his PEG had been.  The Fellow jumped on that and I interjected that perhaps it hurt more in the past two days because someone had been hunting, shot a doe, and had cleaned it in the woods before getting his wife to come assist him.  Dr. Fellow then immediately dismissed the pain as a pulled muscle.  Probably dismissing is not a good idea with Rich.

After Dr. Faris [thank goodness] showed up, … Dr. Faris is Rich’s psychologist and has worked with us for about 6 months…he was able to help direct Rich a bit more.

It came back to the happiness issue.  Rich said he has never been truly happy since he came back from Southeast Asia.  Ever.  There is no joy in his life.  

At this point I become skeptical.  He has never ever had joy?  What about the times he and are are kidding around?  What about the things he plans to do with his grandkids?  What about the joy he feels when he is able to visit with his daughter or the joy that Lily brought him this summer?  This was not happiness?  Laughter, the twinkle in the eye, the hugs given to friends and the laughter…is not joy or happiness?

At this point I become skeptical and see Rich as a Drama Queen.  In front of the doctors he is all gloom and doom.  In social situations?  He laughs, he kids, he smiles and when we are alone he is not the same man sitting in that room.  So I am confused.

Dr. Faris inquired about our incredible relationship together.  Rich huffed a small almost sarcastic laugh.  “I can’t make love to her, she has had medical issues and an infection…and then I don’t think she is into it, not like I want to be into it… So know I just don’t feel anything.”  He made another noise that relayed his frustration? disgust?

All I know is I glanced at the two doctors and saw them both quickly look at the floor.  Dr. Faris’s face turned red.  I know the question he was asking in regards to our relationship was not about sex, but about the caring and deep love we had for each other.  Dr. Fellow, well, by his expression, this conversation was going in a direction he had no idea how to control.

Rich went on to repeat his horror stories from Vietnam.  I sat back, already feeling like a heel and listened to the same thing I’ve heard so many times over and over.  What was coming from him were flags for mental health issues and not Palliative Care issues.  He was unhappy, he felt tired, he felt like he couldn’t do anything, his cancer had ruined his life.

I wanted to stop him.  When he said those things about me, I felt the slow burn and considered leaving the room.  But I wanted to see what progress we could make with Palliative Care.

Dr. Fellow soon jumped up and excused himself.  He was gone for about 20 minutes and actually some of the tension left the room.  Dr. Faris was able to converse and steer the conversation back to what Rich was hoping PC could do for him to make things easier.

I suggested that it seemed to me that at the moment his mental health and this time of the year were overwhelming Rich’s life and that we should try the Physical Therapy and Tia Chi and then return to Palliative Care to see if these things worked for helping Rich’s balance and strength issues.

I also felt that there needed to be a bit more intervention at this point … right now… with Mental Health.

Dr. Faris agreed.

Dr. fellow came back in and we tried to get back on track.  Dr. Fellow explained that Palliative Care was not a fast moving process.  One of the big issues he wanted to bring up today was a discussion of the future.

What would Rich do if the cancer came back?  Had he thought of end of life care? What was his thoughts on dying? Living?

We'd addressed those issues already we told Dr. Fellow.  We had an Estate plan drawn up as well as end of life plans, also known as Living Wills.

I wonder where this direction is going.  Rich's really recovered quite well from all medical stand points, yet he insists that he isn't.

I wonder if I were in his shoes, how would I feel?  

I guess I would certainly feel lucky to be still alive.  And that doesn't seem to satisfy him at all.

They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

4 Month Visit with Hematology Oncology

We went to see Dr. Faris first who has been a big help through out the treatment process.  He is a psychologist.

Rich was pretty insistent on getting signed up for Tai Chi, as he feels this form of exercise can help with his balance and his psychical well being.  It builds strength and balance and so much more.

With that done we saw Dr. Rahim.  He went through Rich's chart and we talked a bit about how things were looking good and Rich was now in the monitoring stage.  There would be a follow up with ENT -- Ear Nose Throat, and we'd see him again in 3 months.

We told him that we were going to meet with a Dr. Loconte who is in charge of Palliative Care and Dr. Rahim nodded, he believed this was an excellent choice for us.  Dr. Faris planned on sitting in with us on the first time we see Dr. Loconte and Dr. Rahim said he would be dropping in also.

What exactly is Palliative Care?  Well it is not end of life care, that is called Hospice.

What Is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

We thought about this decision and felt that is was a good fit for Rich.  Dr. Faris had brought it up a while ago and we've talked with other health professionals [nurses in particular] about it and they said it was a great program.

As Rich told Dr. Faris yesterday, "Look, we are all going to die.  I just don't want all the decisions taken out of my hands and feel lost like I was during cancer treatment."
Dr. Faris understood.

With Dr. Rahim, Rich said, "If that cancer comes back, I am not going through treatment again."
Dr. Rahim shrugged and put a hand on Rich's shoulder and nodded.

"Mr. Ewing, let's cross that bridge if it ever comes to that? Okay? I will be checking in with you with your visit with Dr. Loconte."

So onward our care goes.