In many families, it seems that no matter how many children there are, more often than not the caregiving for an aging parent falls to one sibling. This can be for a variety of reasons – geography, financial limitations, family disagreements – but caregiving places a lot of stress on the giver. And on top of it all, the caregiver may fall victim to Sparkly Card Syndrome.
Ann had six children, and Rosie, her youngest, was her primary caregiver at the end of her life, as she was declining rapidly due to dementia. (Ann liked to remind Rosie that “One can take care of six, but six can’t take care of one,” which was less than helpful.) Rosie suffered from the usual symptoms of round the clock caregiving: sleep deprivation, anxiety, depression, and physical and mental exhaustion. Rosie’s out of state siblings would send Ann cards – pretty, sparkly cards – which she thought were just wonderful! She loved getting sparkly cards in the mail, and would tell Rosie how wonderful her children were to send her these beautiful cards – which just deepened the feelings of frustration and isolation Rosie felt about being “stuck” as the primary caregiver. Ann could not realize the extent of or thank Rosie for her help. Rosie is a victim of Sparkly Card Syndrome. How do you deal with siblings who are not able to participate in daily caregiving, and despite their best intentions, may make the situation worse?
First, share your feelings of frustration. If your siblings are not receptive to your situation, find a caregivers support group. Your local Alzheimer’s Association chapter (find a chapter here, Tarrant County support groups here) offers support groups in a variety of locations, settings and times, and some provide caregivers so you can attend a meeting. It can be helpful to have someone who is in the same situation to talk to. You may learn valuable tips from your fellow caregivers.
If your siblings are receptive, try to share the good times with them as well as the bad. Share when Mom says something funny or has a good day, and they may be more willing to listen when you need a shoulder to cry on. Your siblings may be feeling cut off.
Second, ask what they can contribute. If your sibling is out of town, ask if they can visit for a weekend to stay with Dad while you take a day off to run errands or get out of town to rest. Ask for a monetary contribution – whatever is affordable for that person – to help pay for daily sitters, respite care, or other items that an aging parent may need.
Have a heart-to-heart with your siblings about their involvement. If a brother is simply not able to participate in any way, ask for his blessing to make whatever decisions need to be made without expecting criticism from him. If you have a sister who would be more than happy to help, but lives too far away, promise that you will keep her updated with a short email or phone call, and ask for her input in decision making. Defining the roles of each person in the family can go a long way towards preventing strife.
Finally, don’t be afraid to take care of yourself. Your feelings are important too, and if a caregiver support group isn’t enough, seek out professional counseling. You are certainly not the first one who feels overwhelmed and frustrated. If it gets to be too much, visit with an attorney or geriatric care manager to see what options are available.
Rosie is my grandmother, and Ann was my great-grandmother. Times have changed since Rosie was a caregiver, and this story is not meant to demean any of her siblings, just illustrate how frustrating caregiving can be. Be sure to take advantage of all resources available to help you through a difficult time – including your Sparkly Card siblings.