Two years ago on December 10, I was contacted by a nurse at the nursing home where my husband had been for 18 long months. She told me that he could no longer swallow well at all and now weighed 125 lbs. That was down from 131 the month before, so not a big drop.
She told me that they would need to feed him through a tube in order for him not to choke and to get fluids and nutrients. She asked me what I wanted them to do.
We had never discussed a feeding tube, my husband and I. We didn’t talk much about the end of his disease and how it would be. By the time he was diagnosed, he was in such an advanced state of dementia he would not have known what I was asking.
So I got to decide. I knew he would fight the tube. He fought everything. He even fought physical therapy although he worked out all his life. He fought getting cleaned up, being assisted – just everything. I didn’t think the feeding tube would be any different.
Two years ago today I visited him. I fed him thickened liquid from a spoon and I could hear his esophagus crunch as he swallowed. I was scared. I asked one of the nurses aides whether or not I’d made the right decision. She said not to rethink it.
At the time my husband couldn’t walk, talk, swallow, control his bladder or bowels and all of this except for the swallowing had been going on for over a year. It was time to let him go.
I spent the next 3 days running errands, getting in groceries, trying to keep as normal an atmosphere as I could for our son. He knew his Dad was dying, he just couldn’t face it. His father’s illness had been worse for him than for any of us. So I tried to keep life normal for a bit.
On the 16th I went back to the nursing home. I saw that they had tried to feed him a little but it wasn’t going anywhere. The aide was removing the liquid from his mouth with a syringe so he wouldn’t choke. They put him to bed and had to use a lift in order to do that.
The nurse asked me about Hospice. I agreed it was time. I talked to my husband then about what was happening. I told him I did not want to lose him but that I could not take seeing him in this condition and that it was better for him to make the transition now. He understood, somehow. I told him Mom and Dad would be there on the other side to greet him. He smiled. My parents loved my husband. I forgot his Mom would be there too – he wouldn’t have gone if I’d mentioned her.
The next morning at 8:30 I received a call from the Hospice RN. She told me my husband was going to die that day. I hurried up, got dressed, had a cup of coffee and ran to the car. I got there 5 minutes after he had died.
I spent time with him saying good-bye. I then drove home to tell our son and do whatever else I needed to do. The funeral home “took him into their care” and I made an appointment for the next day to discuss the disposition of his body. It was all I could do that day – except knit socks.
The first three days after he died I was in a daze. Then on the 3rd day, I felt at peace. I knew he was where he was supposed to be. I felt his peace. That had never happened with a loved one before. But with him, it did.
I couldn’t do anything other than knit socks for 2 months. I was scared. I was not used to him not being there even though I couldn’t lean on him or anything, I knew he was there. So I knit socks. I let my son cook dinner for about 6 months until he started complaining that he would like some food that wasn’t just reheated. I started to come alive again.
I have told my son that I do not want a funeral. They are barbaric and no one will come to mine anyway. I want to be cremated and my ashes snuck into the garbage on garbage day. I have life insurance for my son that will enable him to keep his standard of living up for at least two years. I must have that for him.
As I remember my husband, I think it’s a good idea to ask your loved ones about end of life things. It’s hard to talk about and my husband was always emotional around anything dealing with anyone’s death so I put it off. I wouldn’t put it off again. If you don’t ask, you get to make the decision and it’s a hard one.