Sleeping

I've been having a hard time staying in bed in the morning, because of low level pain. It was one of the reasons for a new mattress and also for an adjustable bed. This morning I woke up at 4:30 and managed to stay in bed until a little after 5. At that point I used the adjustable bed to lift my head and my knees just a bit and tried to fall asleep again.

It worked. I didn't get up until 7:30. I'm pretty sure I've been generally sleep deprived for the last couple of years. I think 7:30 is a lot closer to when I should be getting up considering when I'm going to bed most nights.

Hospice

Today hospice will discharge my husband. He isn’t dying fast enough. It isn’t hospice’s own rules. It is Medicare’s rules. Part of me understands. He has been in a nursing home for 20 months and on hospice for 17 and he hasn’t died yet. The problem is that he joined hospice as a dementia patient. If he had been a cardiac patient or a cancer patient they could keep taking care of him until he died.

The truth is that he should be a cardiac patient. That was how he got dementia in the first place. He has cardiovascular dementia. Most people get that from strokes, but you can also get it from having your heart stop one or two times too many and being resuscitated once or twice too often in a single day.

And he probably does have Cancer. He has had multiple Cancers over the last 20 years. He had a stage 4 Melanoma 20 years ago. There have been multiple skin cancers since then, the last one 6 weeks before he was placed.

Just too frustrating.

At this point I’m not sure if I am going to do anything about it, or not.  I know that they will return if he has a crisis or if he starts losing weight again. That is the one symptom of end stage dementia that he doesn’t have. His weight has been steady for about a year now. But there is something wrong with a system that can refuse hospice care to someone who dies less than 2 months later, and I know more than one example of that. There is something wrong with a system that discharges someone who is as sick and my husband is, and who is obviously dying from that sickness.

I’m frustrated that he won’t be getting the extra care. And that the extra set of eyes won’t be on him. And that they won’t be just a call away when the inevitable crisis starts and he needs the drugs that will keep him comfortable.

More later. Take care all.

My New Bed

I think sooner or later every widow has to do something that changes the home they are living in from OUR home to MY home. I've made small changes already. I've cleaned out the closet and his dresser and re-purposed the space for my own needs. I was forced to make some major electronics purchases almost immediately after I placed my husband because I'd held off for so long that everything began to break down permanently. I was forced to replace the big TV set in the living room, for example, because the repair person told me to never turn it on again or I might burn down the house and he refused to even try to fix it. The computer I was using had both hard drive and motherboard problems and then got one Trojan Horse too many, and had to be replaced. The telephones, both land line and cell, just stopped working altogether.

But the bed was different. Changing the bed, buying one that was obviously just for me and not for us, that was different, and it took me most of a year to decide to do it.

The bed needed to be replaced. There was this depression where I slept. The mattress was memory foam, and it took most of the day for it to recover having been slept on. I finally gave in and replaced it. The room just looks different now.

For one thing the bed is much smaller, a double instead of a King. And the colors are different as well. And how I'm making it up is different too.

My room. Not our room.

First Post

What do I want from this brand new blog? I want to share what I have learned in this new life, now that I’ve started rebuilding it. I spent several years being the primary caregiver of my husband who has dementia. We retired together in 2004 expecting to do lots of fun things together. But that wasn’t what actually happened.

My husband got sick. He had dementia. Dementia begins slowly and lasts for years. As the years passed we got more and more isolated by that disease. He needed less and less stimulation. As for me there were days, in the last year before I had to place him in a nursing home when I didn’t speak to another human being, and weeks when the only contact I had with the outside world was through TV and the Internet. 

In PASSAGES IN CAREGIVING, Gail Sheehy talks about finding oneself in the center of a labyrinth and then working oneself out of it again. The center is the point when you realize that you are no longer fighting the disease that you have been caregiving. That instead, you need to find a way to live with the disease, and then accept that the patient is going to die. Working your way out, for most people, comes after the death of the patient, but in my case it came after my husband was placed in a nursing home because it was no longer safe for me to keep him at home. Not safe for him. Not safe for me either. Suddenly, I wasn’t providing 24/7 care mostly alone. Suddenly I was more or less a widow. Living alone. And figuring out what comes next.

For the last 20 months I’ve been working my way out of the center of the labyrinth. And I’ve been rebuilding my life. Rebuilding your life means finding things to do with all of the empty time that suddenly existed. It meant relearning how to have friends and a social life. In my case it meant making decisions about religion and what I believe and then finding a church I liked and joining it. It meant rediscovering the creativity I had put down, and interests I thought I’d lost forever.

More next time. Take Care all.