A year ago today the charge nurse at the nursing home where my husband was living in the dementia ward called me. She let me know that he was having considerable difficulty swallowing and had lost another 10 lbs. She wanted to know if I wanted a feeding tube inserted.
As odd as it seems, my husband and I never discussed end of life issues. I knew he would be uncomfortable because he would cry when I wasn’t in the room from the very first moment they told him he had vascular dementia. If that were only what he had – he had Cortical Basal Degeneration – much much worse than what they first thought.
He was concerned that he was “falling apart” and I couldn’t go into the subject of “what do you want” with him. So I had to do what I thought was best. The best in my mind was not to prolong his life. He could no longer talk, walk, eat, function at all normally and he looked like death itself. There was no reason to keep him trapped in his disabled body. I said no feeding tube.
A week later he died. The saddest thing for me was that he died 5 minutes before I got to the nursing home. The nurse who was with him said that sometimes people die before their loved ones get there because it would be too hard if they had to die with them in the room. I don’t believe that. I just believe that I should have driven faster.
How has this year without my husband been? It’s flown by. I can’t believe it’s been a year. I have two photographs of him on my bookshelf next my bed. One is his senior picture from high school – he looks so handsome and smart. And then there’s one with him relaxed on the couch, laughing at me as I take his picture. He must have been in his late 40s or early 50s …… he was young-looking all his life up till the end – it’s hard to say how old he was. But he was happy.
Before I came along, there wasn’t much in his life to make him happy. His mother was disdainful and actually hateful. She had a boyfriend who was a hateful, nasty drunk and didn’t like my husband at all. She liked her boyfriend more than she liked my husband. I’ve always thought she was not his mother. He was placed in an orphanage at the age of 2 because his father had tuberculosis and that was odd. His father died when he was 2 so there was no reason for the orphanage if his mother were alive and well. At the age of 9, this woman who claimed to be his mother, picked him up through the Red Cross and took him to live with her. I think she needed a child to make sure she could get to the US easier. Whatever, she was a mean old bitch.
He married at the age of 19 to get away from home. It lasted 3 months. He married again 12 years later and that lasted 6 years. Nine years later, he married me.
We lasted, albeit at hammer and tongs most of the time, for 36 years – exactly 36 years one month to the day before he died. I had a shock when I received my paperwork for spousal benefits from social security – one of the questions was answered “marriage ended in death on December 17, 2014.” Marriage ended in death – horrible words.
The year has flown by. I have returned to my art with a passion. I am no longer constantly depressed by seeing my husband fail an inch at a time. I no longer need go into a nursing home ward where most of the patients are so out of touch with reality it makes you sad. I wonder why we persist in keeping them there, locked up and helpless.
I am at peace with life now. I don’t have to fight to get up in the morning and I don’t have to wonder when he will die. I know that he is in a good place. He has a new life …….. and I hope in his next life he will not have to wait until he is 40 to be happy.