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'.
One step at a time. I understand all this, Val. Thank you for sharing your journey.
ReplyDeleteIt is so much to think about. One day at a time is all you can do...the afterwards can be dealt with afterwards. Good that you have all the legal paperwork in motion. I have no advice. I do understand about the quality of life and how it dimishes over the years.
ReplyDeleteI am almost in awe of you and your attitude and the work that you put into Rich’s care. I hope that I can do half as well if it comes to it, or that someone will do half as well for me if that is what it comes to. I agree that that helper said a thoughtless and tactless thing.
ReplyDeleteI think you are so strong and through all this, so brave. I met my husband when we were 16. We will be married 50 years soon. Could I survive on my own? I am sure I can. But you are right. We would be missing half of us. We will be here for you if you want to chat all night. I know when I lost my mom, what I missed most was the sharing. The sharing that no one else cared about. Oh, I just saw a robin. Did you see the daffodils on Main St. The comfort of shared silence.
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