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'. 

Midnight Musings

Sleeping on the love seat may not work out like I thought.

Being a 'nursing' assistant in the middle of the night is not so awful. But it doesn't add to the beauty sleep.

We got home as planned and lo and behold, Daniel from Hospice was right behind us. Olive's husband was also there. The guys got on each side of hubby and helped him into a transfer chair 

There was a lot of paperwork to go through and Rich was too exhausted to actually deal with it. Verbal permission was granted for me as his caregiver to handle it.

What did we possibly need? We went over the need for a commode. Hospice would replace his concentrator and deal with his oxygen needs. 

The RN went through Rich's current medications and made some adjustments.
He mentioned that his assigned nurse, Jason, would be out early next week to do what those nurses do. I asked if the Jason's last name was Jason M. and he said it was! We've known Jason and his family for a while. I knew he'd transferred to become a Hospice Nurse. What luck that we would have someone Rich was familiar with. 
I used to work out with Jason's wife at the gym when I was doing 6 AM classes. Small world.

He then went through some of the services they offer. Apparently I can also get Respite care so I could visit my son, his wife, and Rory! 

My head was swimming as we entered this new uncharted territory. I was left with stuff to read and look over. 

One of my old friends from grade school called to chat a couple of hours later. I heard a knock on the door and there was a delivery van from MN with a concentrator, tubing, oxygen tanks for back up, and a commode. 

All of the supplies I thought I would need! 

[They also take over the oxygen equipment from the company that supplied it before we went to Hospice]

How in the world could Hospice pull that off?

I'm used to a rather slow motion experience with the VA and the regular medical field.

I got a huge surprise when Rich said he was hungry. I made him one scrambled egg and some bacon. He topped it off with a piece of buttered cinnamon swirl toast and a cup of coffee.-------- This is the largest meal he has had in a week.

We are getting pretty good at the wheel chair thing and um... the urinal thing. 

I want to shout out to the Social Workers of the world. Where would I be without you?

Social Workers get things done. The VA social worker for me as a Caregiver has been so helpful along with the local hospital social worker. They set things in motion and got stuff done.

Hospice is sending out their social worker this week to meet us.

I am worn out but feeling more calm.

Rich woke up at midnight and called out. As I was helping him with the urinal he chuckled lightly and said...

"Wow, they are actually going to let me die then right?"

"Yes, isn't that what you want?"

He gave me a wide grin and said. "Yes, I, DO."

He hugged me when I finished helping him.

"Thank you so much. You are the best."

This morning I am tired. With every little noise, I was listening for Rich to call out for something. Our tiny full sized bed doesn't give me much sleeping room especially with a person whose arms and legs twitch often. So I'm going to try and figure out something better. Maybe a cot would work next to the bedroom. They are not big but I can stretch out and be close enough to help.

Some good things about being stuck at home more is that I can practice my Still Life and Indoor Toy Photography. At least until I can start to plant gazillions of flowers.

And Charlie is beside himself...

so happy to have Rich home!