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'. 

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.