I recently ran a Nancy’s House retreat for family caregivers whose loved ones have ALS. The stories of these women and their families were enough to leave me just shaking my head.
One woman was caring for her husband. His sister visits regularly, but she brings food only for her brother, but not his wife.
Another woman was taking care of her brother. His wife couldn’t be bothered, and their sister would not speak to either of them because she was unhappy with how they told her about his diagnosis.
Or the woman who moved 1000 miles in order to take care of her mother with Alzheimer’s Disease hears, “You know how to take care of Mom. I don’t know how” when she asks any of her five siblings for help.
That said, there are also families that have been the God-sent HH and lifesavers for our guests.
One woman is taking care of her adult son who suffered a traumatic brain injury in a motorcycle accident. Although he can take care of himself physically – that is, he can dress, feed himself, take care of his own hygiene — he has poor judgment and cannot be left alone. It is her sister who steps in on a regular basis to take care of him so that the mother can get a break.
The stories can go on, but the point is that there is no one way that families respond to stress, illness, or the needs of a family member. So, what is a caregiver to do?
The first thing is to know stress rarely makes things better. Although the family may rally around a crisis in the short term, the old patterns of relating will soon emerge. Knowing that, conversations that set the rules and expectations should be held ahead of time, if possible.
One approach that some find helpful was developed by Home Instead Inc., the parent company for Home Instead Senior Care. They call it the 50-50 Rule. This was created for adult siblings who will be caring for aging parents, but many of its elements can be adapted to any caregiving situation.
1. Talk and listen. If possible, do this before things become a crisis, and include everyone in the discussion, including the person with the diagnosis. Be sure to list all needs and concerns. Be sure to identify clearly who can commit to what.
2. Research options. Once you identify what you need, find the resources in your community that can help you meet those needs. This task should be divided so everyone has a responsibility.
3. Plan ahead. Easier said than done, but the first two steps will help you identify what needs to happen next, and then after that. The more you can plan for, the easier it will be. This should include a plan to support the primary caregiver.
4. Be flexible. A friend of mine says the caregiver motto is Sempre Gumby, always flexible.
Plans only go so far; needs change quickly. Plan, but know it can change. A deep, slow breath will help you make the transition
5. Be honest. Ask for help when you need it.
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And remember, those siblings are the same people you grew up with. Having plans in place will help, but if it has never been a mutually supportive relationship, have a plan B to find support.