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.

You Gotta Love MDD

Also known as Major Depressive Disorder.

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.

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].

The sun is shining. The sun is not shining. 

~~~~~~~~

I went into the woods to get that very first black morel mushroom. I thought it would make him smile. 

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. 

The grand kids in Jewel Weed July 4th 2010. Yeah, that is the only reason I know exactly what year it was.

[He hasn't been in our woods since 2016.] 

Bam. It hit me. His time frame was different than mine. 

So.

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.

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.

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.

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.
It is like walking on nuclear egg shells.

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. 

Well...until he gasps and asks me to set up his oxygen that is....

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. 

He decided that since I had the vaccine I should sleep or sit on the couch. I shouldn't go...go ... go. 

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. 

I'm his caregiver. There are days when I want to close the door and walk away and keep walking never looking back. 
But I am not that kind of person.

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.

I am the only other living soul here on our farm. So I get to be the Fall Guy. 

I miss my friend. 

I miss my sense of adventure and doing my own thing whatever that was.
I've bowed over and over to the goddess of MDD.

It makes me exhausted.