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Thursday, April 5, 2012

Guilt

I was going to write a post about my own guilt. Every caregiver I know feels some guilt. Rationally the healthier we are the more we realize we should not be feeling guilt because we are doing the best we can with a disease that asks more of the caregiver than most of us have to give.

Last week, there was a news story in the Lehigh Valley about a well respected man who killed his wife and then himself. She was a dementia patient. In her case probably Alzheimer's, but not necessarily. A good proportion of dementia patients don't have Alzheimer's. At some point he promised her he would never place her, that he would take care of her to the end at home. And last week, that promise almost certainly caused the murder/suicide.

The reporters have been searching to find out if he was taking advantage of any of the support groups out there. It looks like he was trying to do this totally on his own. There are probably 4 or 5 face to face support groups where you can just walk in. Meetings are "advertised" in multiple ways. If you know such things exist, they aren't hard to find out about. There are also multiple support forums available online. He almost certainly wasn't lurking, much less posting, on any of those either.

My own support groups have always been online. I don't know how a caregiver survives without them. And, in the case we are discussing, he didn't survive without them.

There was a recent op ed piece in the paper by someone who knew him, possibly very well, in better days. But it was quite obvious that although the writer knew and respected the man, and to some extent the couple, that he knew nothing about what it is like to care for a dementia patient. Especially a spouse.

One thing. I don't say that caring for a spouse is easier or harder than caring for a parent with the disease. But it is DIFFERENT. Pain is pain. Grief is grief. Everyone involved in this set of ugly diseases feels pain and grief. But a spouse losses their support system along with the disease. Frequently there are money issues that children don't experience. The person who did the other half of the work around the house is no longer doing it. The person paying the bills, making the meals, cleaning the house, taking out the trash, changing light bulbs in the ceiling fixtures can't do those things, and they fall on someone already stressed with the rest of the the caregiving issues.

In the case of the couple we are discussing, when the crisis came, all of the options other than immediate death were gone. And most of the nursing home placements I am aware of occurred during a crisis of some sort. He had closed that option off early on when he didn't think it would be necessary. He had made a promise that he could not keep, almost certainly because of guilt. And as a result both of them are dead almost certainly because of guilt.

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