After the Support Group: Notes to Remember

At last night's meeting there was a lot of talk about guilt...guilt about getting angry, not wanting to spend time with a family member with dementia especially in the face of ongoing aggressive behavior, an inability to relate and anger at not being able to "fix" the problem (the person); guilt at feeling helpless and unable to conjure smart and reasonable solutions, guilt because of the silence that occurs after a person is moved to a more appropriate place for them at that point in their illness (assisted living, dementia unit, nursing home).

If you've raised children you may remember the breath of relief when they rest their heads at night and finally you have a moment to yourself but here, with an ill adult, guilt builds because it is exactly at that time in the evening that you used to look forward to; a time to relax together or call to catch up but that person is no longer "there" or "here". And there's the guilt of recognizing that the person you love is no longer the person you grew to love over many years and now, with little to say, you'd just as soon avoid.

There's guilt as a life-long condition and guilt of demands that can't be met - take me home, where's my mother, why doesn't your brother come to visit, why why why...

Mark aptly captured that guilt, "My mother could have been a travel agent for Guilt Trips." (I paraphrase).

It was not all gloom and doom. People related sweet moments when out of the fog "thank you for all you do" comments came and went in a flash but nevertheless were uttered, now to be cherished as little gems and reminders that you as caregivers are not shadows but, rather, the people who make it all work.

Caregiving may be described as "selfless" but let's not forget that being reassured of our efforts is not only important but needed to soldier on.

I asked this: what part of caregiving do you feel proud of? One member, with a startled look exclaimed "feel PROUD of??" A silence fell over the room and then he offered this thought, an answer echoed by many, "I know I make her feel safe. I remind her of that all the time, she nods and goes back to sleep." (I paraphrase)...

To greater and lesser degrees that sentiment was embraced. For some it doesn't feel substantial enough, from my perspective it's the very thing we all hope for. When we are vulnerable we need someone to care enough to worry about making us feel safe and to recognize that variable moods may surprise the ill person as much as anyone else. We know that dementia can turn a sweet person sour and angry and an angry person quiet, compliant.

When we learn to expect the unexpected the best we can expect of ourselves is to provide a net of safety. Safety is not a big word nor does it solve all problems but it is the overarching need we hope for.

I salute caregivers and especially the members (both previous and current) of this group for their dogged determination.