Care partners are often making tough choices.
When should I insist on doing all the driving? Can Mom safely live alone? Where can I find respite care for Dad? These are heart-wrenching. An even harder decision can be the day the care partner realizes she can’t do it all. When the demands on her life mean that some of the things she holds dear are going to have to change.
Resentment boils up. “I’ve given up so much. Am I to give up all the fun in my life as well?”
Molly always hosted the family Christmas get-together, and she loved it. She was all about family and celebrating. For weeks and even months ahead, she baked and shopped, decorated and planned. It wasn’t a chore. The anticipation of the event and the looks of pleasure on her family’s faces gave her hours of joy. It was her thing, and she loved it.
But not this year. Since Mervyn’s stroke, she had been his caregiver. Her children were relieved when their dad regained his speech and mobility, and were celebrating his return to “normal.” Molly knew they didn’t realise how much she was supporting him. He needed help with dressing and bathing. Beyond that, he couldn’t help with things around the house like he used to. She carried that entire burden. She’d hired someone to shovel snow and make minor repairs, but everyday tasks landed on her shoulders. Instead of the usual joy and anticipation, thoughts of the Christmas season were a black cloud on her horizon. She wanted so much to do it, and resented the realization that she couldn’t.
6. Learn to say “no.”
It’s often the most difficult syllable to utter, especially if, like Molly, you are turning down something you like. There is guilt involved (“I don’t want to disappoint them.”) and unrealistic expectations (“Maybe I could do it.”) All of us–even those who aren’t care partners–find it painful to have have those conversations. But if you don’t say “no” when necessary, you are adding unnecessarily to your burden.
Some times “no” isn’t the only answer. Think creatively and communicate. Find ways to make if happen. It may not look like it always did, but that’s okay. It may even be better.
Molly’s story has a happy ending. She invited one of her daughters for coffee. (She didn’t feel up to meeting with all of her children.) When she explained the situation, there were tears as Molly revealed how much she was doing for their dad. Her daughter realized the family hadn’t done a good job of looking after Molly, and immediately talked to her siblings. In a few days they had a plan.
To ease Molly’s burden immediately, they arranged for weekly housekeeping and installed a dishwasher. They changed how they visited so that Molly had some “alone” time and some “fun” time.
As for Christmas, one of the children took over the hosting, but everyone pitched in, and Molly was the director of the proceedings. She went shopping with them, helped decorate and participated in ways that gave her joy without being a burden. The family found new ways to celebrate and developed new traditions.
7. Develop realistic expectations.
Of course, this is related. it wasn’t realistic for Molly to consider hosting the celebration.
There are other, smaller concessions that often need to be made. Because being a care partner is always changing, you need to re-evaluate situations constantly. What works this week may not work next week. Or tomorrow.
Consider some scenarios:
- George and Sylvia always go on a winter vacation. They look forward to it and plan it for months. Now Sylvia is in a wheelchair and needs assistance with the activities of daily living. Travel like they are used to would be difficult for both of them. On the other hand, they could consider other options, such as
- George could hire a private duty personal support worker to go with them.
- They could stay in one place with support rather than travel.
- They could plan a few shorter, closer trips
- I learned this in my own family. My sister is 10 years older than me, and her children spent lots of times with my parents. My mom babysat, and they were close to her. By the time I had children, Mom had early Alzheimer’s. She often remarked that she couldn’t wait until my oldest could stay alone overnight with them. That never happened. I brought her (and later, her sister) over to the house frequently and my parents visited my house. We did things together, and Mom had a great relationship with them and loved them to bits. But I recognized they wouldn’t have the same kind of relationship with my parents as my niece and nephew did. Things had changed.
Keep the conversation going–what creative solutions have you found? How have you adjusted your expectations?