Sunday, October 30, 2022

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.

2 comments:

  1. Hugs. I can't imagine hoe difficult this is for both of you. Rick is blessed to have you even though he might not be able to express it. I'm glad you can find joy in the little victories- the legos!- and hope that the addition of morphine can bring some comfort to both of you.

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    1. I hope so too. One of the fears an addition like this brings is the increased chance of falling. Of course there is also the increased likely hood of him being much sleepier during the day.
      However, his comfort is the whole point of Palliative Care.
      Thank you for your kind words.

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