Help for Alzheimer's Caretakers

How can a family find support for caring for Alzheimer's?
The biggest source of stress for women is the notion that women are more responsible for caregiving, more responsible for family. It comes from social pressure, and women as individuals internalize it. No guidelines for management and coping will be good for long, if there is a disproportionate burden all the time.

So, the first thing for a family to do is decide how to work together and share the responsibility among all the members. Some will have more money, some will have more time, and most will have not enough of either. There's no rulebook to decide exactly how this is done. Some families will divide things equally, others will divide things equitably and there will be many different ideas about what these terms mean. Schedule a family meeting and review the reality against the plan every few months. Sharing the responsibility on paper may not lead to the sharing in reality. The plan may not work as well as thought and need to be changed.

Enlist as much extended family and paid help as possible. Housekeeping, errand, yardwork help can relieve the stress as much as caregiving help. Plan on saving up for respite care at some point. Check into charitable or state programs. Everyone should schedule time to spend with their own children every week. Do something special, like take them out to lunch. This way the kids will not feel resentful or neglected.

Keep in mind that the entire family dynamics and roles, going back to childhood, will be intensified. Sibling rivalries and any unresolved emotional issues with the parent in question can be re-activated at this time. Try to get issues out in the open. Seek a mediator of some sort, if necessary. A relative outside the immediate family, clergy, or professional counselors may help.

On a one to one level, take a minute to think about your relationship and feelings about this parent. Remember that everyone's parents have let them down, overlooked some of their important needs, and hurt their kids' feelings at various times. Keeping this in perspective, and not allowing oneself to dwell on those moments and get angry when stress gets high is all most women need. However, if a parent was truly less than average, as a parent in general, or in relationship to you, this can become a problem. In many families 20-50 years ago, sons were favored over daughters. So women may have more conflict over the inequities of the past and the expectations for contribution today. In cases of abuse, it may not be a good idea to do direct caregiving. For women, previously undisclosed sexual abuse is the major pitfall. The parent will not be able to talk to you in a coherent way, so the challenge of working out the past is on the individual. Again, individual and family counseling is needed in these more complicated situations.

Even when contribution is spread evenly among all the caregivers, the expectation of women as the primary caregivers or nurturers can still lead to burn-out. Women tend to be harder on themselves and see flaws and failures in their caregiving. Women tend to blame themselves more for the inevitable accidents and mishaps that will happen with someone with Alzheimer's. Share experiences with other caregivers. You will find that you are not the only one who's mother walked out the door, or tripped over something. Support groups are great for finding people to share with. They lead to practical tips on caregiving and resources, as much as emotional support. On-line support groups have unique advantages -- you can post anonymously and thus, minimize the fear of disclosure, and it allows you to fit contact into a busy schedule.

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