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Thursday, April 19, 2012

Thinking It Through

I recently read a blog written by the daughter of a woman who died of dementia a few months ago. I have been thinking about what she said in that blog. She is having a very hard time with grief. I understand that. It worries me that she is taking it so hard, but I understand it. The first thing that has to happen when one is dealing with someone who is having feelings is to acknowledge that what they feel is what they feel. And that feeling what they are feeling is both OK and real.

Her grief is OK. Her grief is real. And so is her anger.

The grief specialists say that everyone goes though multiple stages. I'm not sure that everyone goes through all the stages in order, but one of those stages is anger. It is easy to be angry when you are grieving, not just with the disease that took away your loved one, or with the loved one him/herself for dying and leaving you alone, but with those people around you who didn't step up EXACTLY the way you expected them to step up. One of the things this daughter mentions in her blog is people who called her father instead of calling her mother. Of course, her mother was an extreme case. Lots of crazy actions. Lots of aggression and exit seeking. There aren't many patients out there who have those symptoms much worse than my husband did, but her mother was several times worse and it all lasted a lot longer than it did with Joe.

The daughter's life was extremely busy when her mother was alive because of her mother's illness. They were taking care of her at home, mostly with no professional help until the very end, because of the kind of dementia she had. She just did better with family help. But that meant that in addition to going to school, and taking care of a family with two kids, and doing regular church work, she also spent several hours every day taking care of her mother. And she was exhausted most of the time.

Suddenly a huge block of time was empty after her mother died. It used to be filled so full that everyone around the patient was sleep deprived, and now that block of time is empty. One of the problems with grief is the question of what do I do now. One of the jobs of grief is to rebuild your life, but you can't rush that. You have to have the time to feel your feelings first.

One thing I've learned about helping the caregivers of terminal illnesses is that not everyone can do everything especially when the disease is dementia. I've had this problem myself supporting people other than my husband, especially when he was home and so sick. The person who can visit, can't do financial stuff or make phone calls for the caregiver, but the person who can do the financial stuff and make those hard phone calls, frequently can't visit the patient. It doesn't mean they don't care. At one point I needed people to do my food shopping for me and when I admitted my need to one person I suddenly had multiple people calling me to ask if they could do that for me. They couldn't take my husband out on outings, or keep him safe at home for me, but they could go to the grocery store and shop. Which, it turns out, was what I needed.

With some of my online friends I've seen families that mostly were absent during the disease suddenly produce a flurry of organized activity, in mass numbers, when there was something that needed to be done, and done fast. Because they knew they could do it.

Just because someone can't help you in exactly the way you want help doesn't mean that they have abandoned you because tomorrow something might come up that they would be happy to do.

You survive caregiving by recognizing this simple truth.

Take care all.

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