A Recipient's View: Helping a Family Caregiver Cope Better

Randye Sundel is a writer and long-distance caregiver for her ninety-one-year-old mother who has dementia and lives in a Florida assisted living residence for independent older adults. When the demands of visiting her mother bi-monthly became too much, Sundel turned to a Family Caregiver Network support group through Westchester Jewish Community Services (WJCS). WJCS is a beneficiary agency of UJA-Federation and one of 10 agencies that received grants from our Family Caregiving Initiative. Here she tells how the group made a world of difference to her.

Do you have any siblings to help you care for your mother?
My brother died of Hodgkin’s disease in 1979, so providing care for my mother is all on me. The good and bad news is that I get to make all the decisions unilaterally.

What is difficult about seeing your mother age?
One of the hard things for me was being able to accept my mother’s dementia. She was a brilliant woman who used to do the Sunday Times crossword puzzle in ink. She can’t do crossword puzzles of any kind anymore. I had to accept that she was not the same person, and I simply could not continue to compare her to who she was. She was always supportive and worried about my well-being. But when I had foot surgery, she would not ask about it, even if I mentioned it in passing. She became more self-absorbed. She was very un-Mom like. I had to accept that this was the disease.

What is difficult about caregiving for your mother?
It’s very difficult for me to keep patient. I’d tell my mother when I was coming to Florida and to write it down. She would write it down but couldn’t remember where she wrote it, and would ask me the same question a thousand times. It caused me tremendous angst and it was communicated to her. That was harmful for my mother. I started to learn through the support group that it was important to keep myself as calm as possible, and to keep her as calm as possible.

Why did you seek help from the Family Caregiving Network?
My synagogue Temple Shaaray Tefila had Jane Slevin of WJCS come on a Sunday to talk to anybody interested in hearing about caring for an aging parent. I went this past winter. Jane talked about available services and that there was an ongoing support group that meets once a month. I needed someplace where I could vent, feel safe, and not be judged. I have a loving, supportive husband, but I was starting to have arguments with him.

How has the support group helped you?
Everybody is willing to hear you out and you’re able to learn from people. The idea of taking care of yourself and making time for yourself really helped me. These are not ideal circumstances, you’ve got to go with what you’ve got. You cannot abandon the rest of your life, but find a way to bring caregiving into it. And try to lose that guilt. Because if you know you’re doing the very best you can, that’s really all you can ask of yourself.