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Sunday, June 2, 2013

Grief Update

This is the time of the third anniversary of when it became obvious that I could not keep Joe at home with me. I'm still twitchy over the fact that it is almost 9 pm, and it is still light outside. I've lived in places further north where it is still light in June and July at 10 pm. And I've lived in places further south where it gets dark a lot earlier in the Summer than it does here, but also doesn't get dark as early in the Winter.

Still during that last month at home, the light affected my life, and the way I could take care of Joe. He would get very tired around 8 pm and need to go to bed. But during that last month he almost always woke up an hour later, and got dressed for the new day and came to find me at the other side of the house. Getting him to get undressed and back into bed got harder and harder during that month, but if I had not succeeded I would not have gotten any sleep at all.

He also got more and more agitated as the afternoon progressed. During the last week, just keeping him in the house became almost impossible until on the last full day he was home he got past me and went outside, without shoes, to "go home." He didn't recognize where we lived as home anymore. He hadn't known who I was for a couple of years by that point.

He was in the hospital over the July 4th Weekend in 2010, and placed during the weekend. He was placed because an ER nurse recognized that it was no longer safe for him to be home with me. Not safe for him. Not safe for me either.

He went to a very good nursing home. You have heard stories about nursing homes. Hear this one about a nursing home that did an excellent job of taking care of my husband for the last two years of his life. There is no way I could have done what they did. He actually got away from them once too. It took 6 people to gently talk him back into the building, into an elevator, and up to the locked dementia floor. He spent several days trying to get out of that floor, but it wasn't possible for someone with dementia. The difference was that they could let him try until he got tired of trying.

I know they were gentle when they talked him back into the building because I saw them do it with a different patient. I know there were 6 people involved because one of those people told me how many there were.

Within a week he was walking up and down the halls 20 to 24 hours a day until he would collapse in exhaustion. Then they would put him to bed. They could let that happen because when their working day was over they could go home and go to sleep. At home I would not have had that option.

After I placed Joe, I spent two weeks dealing with sleep deprivation. I decided that if two weeks of lots of extra sleep and lots of extra just taking care of myself weren't enough, I'd go to the doctor, but right on schedule my eyes and my body began to stop hurting.

This was also when the grief started. All caregivers grieve the loss of parts of their lives while they are caregiving. They lose friends, and even the possibility of friends. They lose the couple thing. They lose all of the stuff they planed to do which can't be done anymore. But once Joe was placed, there no longer was any question that it was all going to be over, and final, and quite soon.

The surprising thing was just how long it all took.

Take care all.


  1. I seem to be on the start of the path you have already walked.........

  2. Stella, I worked in health care for years and watched many families go through what you describe. Then my in-laws had a similar experience. I began to see that nursing home placement gave family the chance to remain care GIVERS while the staff could be care TAKERS. They provided the needed day to day care so family could remain refreshed enough to continue a relationship at whatever level was possible in the given situation. Anniversaries are always difficult. You have my thoughts and prayers.

  3. My DD works at a nursing home and occasionally picks up shifts in the memory care unit. It is hard even for her to not be recognized each day... such a painful disease. You write so well about it.

  4. It was July 2010 when my dh's dementia became so apparent that I could not ignore it. I'm so glad you had a good experience with the nursing home it just makes memories so much better. We didn't go through that because dh's health had been failing so much that he passed away 10/2/12 while still living at home.

  5. Stella,
    Thank you for sharing. It is a good for others to know how it really was. My husband also got out of the house one early am, and by 3pm that afternoon I had deadbolts put on all the exterior doors. Eventually, pneumonia took him, when he was in the hospital for 13 days. The longest and shortest days of my life. I'm glad you write of your progress, with your quilting and knitting. This is how we put our lives back together.

  6. Hi Stella, thank you for sharing your story of the last day your husband was in the house. We keep our memories a long time. I'm glad you have good memories of Joe being in a good place where he was treated kindly and given the care that he needed.