What next?

It's no secret that COPD is a taker and a taker. Pictured is hubby taking his afternoon Nebulizer. He'd be angry at me for grabbing a shot through the stairs, but it is what it is.

COPD is pretty unforgiving. It takes everything from a person  and if there are other health issues, it makes it all the harder. [Generally there are always co-health issues to go along with severe COPD]

Most mornings he gets up and comes in the kitchen for coffee. I take his 02 readings right away. When he takes his CPAP off and gets dressed his 02 drops to the low 80's. Anything below 92% is dangerous. He has a hard head and won't hook himself up to his concentrator.

Below 92%, your brain starts to malfunction, as well as all of your organs. 

Then...we found a lump in his neck.

They did an ultrasound and then it was recommended that a needle biopsy be done. That needle biopsy turned up 'not enough' cells and samples to make a diagnosis.

Rich was against the ultra sound, I convinced him to do it. He was against the biopsy and he was not happy but did it.

Now the lump has swelled. It causes him no pain or difficulty in swallowing or breathing. But he is not a happy camper. He told me if we'd just left the d...ned thing alone he'd have been happy. 

The doctors recommend a removal of the 'nodule' and then send it for testing and he emphatically said....

NO.

I can't blame him, he has gone through so much in the past 8 years that it seems cruel to put him through anything more. 

In fact he is becoming more at peace with his future. Even as far as to make sure that I have what I need when he is no longer here. Odd to be making plans like that, but we are at that point. We actually set things up 12 years ago. That was 4 years before he was diagnosed with throat cancer.

The nodule could be benign but he doesn't even want to address that. 

So we meet each day as normally as we can and I take care of him and everything on the farm. Once he is done with the farm we will move off from it. Oh, I'd love to stay here in these beautiful hills forever but that won't be practical at all.

The fact is, he wants to stay here until he dies and then he wishes me to move on to live in a place where I don't have so much work to do. Our place was remodeled and it IS a solid low maintenance home. However, the remote location will make things like getting groceries, medical care, and help much harder as I age.

We've decided that I should move to an area where I have access to public transit and the ability to have groceries delivered if I needed that done. Location, location, location. Since I [we] have no relatives living in this area, I will move closer to my son. 

One of my new and younger neighbors has voiced her desire for me to stay. She said she would watch over me. In truth, I am not sure I'd want her to. She is now learning to deal with her own parents who are aging. She can't care for her parents, work full time, and raise her children...and then take on someone like me.

The plain truth of it all is that I am tired of being the adult all of the time. I once asked his daughter to give me relief. Her answer was no because she had to make sure her husband had his lunch packed for him daily.

Her children come to visit more often than she does. My grand daughter asked me last weekend if I didn't think it would be smart to leave the farm after Grandpa was gone. I would be too alone out here.

My son had voiced the very same thing. So had my other grand daughter who had come to visit a few weeks ago. 

What next? We actually have set a plan in motion. Well, at least an option.

Hubby and I agree, when he is gone, I will move back to the town where my oldest son lives. 

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.

Up and Down and All Around

Sometimes our lives are funny and sometimes sad.

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.  
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. 

"How long will you be gone?"

Me: Well as long as it takes to drive there, hike, and get back.

"How long is that?"

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?

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.

"I don't always take naps."

I nod, but don't answer and I wait.
He sighs and sips his coffee. 

Me: Are you afraid of me leaving the house to do things?

"Well you always get to do what you want, you are going to do it anyway." 
His tone was that of a petulant child.

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?

"No." He stares out the window and I see the blankness. He finally says to me...
"Fine. Go."

Me: Okay. 
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.

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. 

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'. 

The Mind is a Curious Thing

Is it forgetfulness?

What are spatial issues? What are cognitive issues? Who decides? 
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.

There is a Chart of 10 questions that can be asked:

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.

In the past 4 weeks does the patient have any difficulty or need help with:

1. Writing checks, paying bills, or balancing a checkbook. 
Hasn't been able to in 5 years.

2. Assembling tax records, business affairs, or other papers.
Hasn't been able to do in 5 years.

3. Shopping alone for clothes, household necessities, or groceries.
Mute point, cannot drive, hasn't driven in over 5 years.

4. Playing a game of skill, working on a hobby.
Gets lost in card games or any simple game. Frustrating. Stopped working on hobbies in 2017.

5. Heating water, making coffee, turning off the stove.
Doesn't understand how to use the stove. Hands too shaky to make coffee.

6. Preparing a balanced meal.
No. Unless making microwave instant oatmeal for breakfast lunch and supper is considered balanced. It is the only meal he will prep for himself.

7. Keeping track of current events.
No, doesn't follow news or read the paper.

8. Following a TV show, book, or magazine and being able to discuss them with acquaintances.
No reading as it doesn't make sense to him. TV is sometimes confusing, but it is something he will do all day.

9. Remembering appointments, or remembering to take medications, keeping track of recent conversations, recent events and the date.
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.

10. Driving, traveling out of the neighborhood, or arranging for public transportation.
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.

So what is the scoring for this?

Let's see the score guide.
0 Can do this without help.
1 Have some difficulty, but can do this without help.
2 Need help with this.
3 Can't do this.
0 Never did this activity.

How do you address these issues?

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? 

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. 

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].

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.

New things that have changed since last year's assessment. 

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.

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.

He can dress himself.
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.

I get very irritated and angry and have to constantly remind myself that this is not him being a jerk. But his mind is on another timeframe or some other universe.

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.

Weeks are not in his timeframe. Days are just days waiting for a nap or bedtime. 
The other night he sat up at the table after I told him I was walking to the ridge to take photos. 

Currently every time I get ready to go to the store or go shopping for food, he asks where and when I am going. 

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.

His words are still backwards and sometimes I have to really concentrate on what he means when he talks.

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.

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.

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. 

Thursday I'd had it up to ... there. I was done. All done in. 

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. 

I'm going back to the VA Caregiver program and asking for a new assessment. 

I can't fight daily any more. 

No worries, I am okay. 

But I write this for other CareGivers so they know they are not alone in all of this.

This is a hard trail/path to follow and a person has to really seek out assistance.
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.

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.

That's it. Sorry for being so long.