Sunday, November 14, 2021

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.



2 comments:

  1. I'm so sorry. Every caregiver knows this anguish. But each of us has our own set of circumstances with a different hand dealt. I am so sorry you are alone in dealing with all this. And I understand your husband's hesitancy. With my dad, he was afraid that anything suggested to him meant we were denying care to just let him die. It was hard to convince him that dealing with emotional stuff did not mean neglecting medical stuff. And he was so afraid of death. It is so hard for him and so hard for you. I hope that you can find good people at the VA who can help. We did have a great social worker when we finally convinced him to join assisted living. Unfortunately we lost her when we had to move to the nursing home. And we also had to switch doctors, even though the difference was one hallway in the facility. I wish his daughter was more compassionate. However I don't think you are going to instill that in her.

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    1. My husband will admit that he was one tough dad to live with and he was a mess for a good part of her life. So there is that. I don't know how it influences her as she always seemed to be so caring and loving when we first met.

      We are going into this with our eyes open.
      He is so tired of struggling each day just to exist. Oddly enough, the tough guy I married has become a mostly quiet and agreeable 'patient'. His stroke took away his quick and nasty temper.

      Thanks. I think he and I are on the same page for this. I know it was not that way with him mother. She fought us tooth and nail.
      So I am relieved that we are not dealing with what you had to go through.
      I have high hopes for the Palliative Care team also. Crossed fingers.
      My husband just wants to live with no pain and no effort to bring him back should anything fail.

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