Sometimes as a caregiver, you have to make tough choices.
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 Molly thought they didn’t realise how much she was supporting him. He needed help with dressing and bathing, and couldn’t do housework such as laundry and dishes like before. She’d hired someone to shovel snow and make minor repairs around the house, but the burden of every day landed on her shoulders. Instead of the usual joy and anticipation, thoughts of the Christmas season were a black cloud on her horizon. A burden. A stress.
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 caregivers–find it painful to have have those conversations. But by not saying “no” when necessary, you are adding unnecessarily to the burden of your caregiving.
The story has a happy ending. Molly 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, and her daughter realised they hadn’t done a good job of looking after Molly. The daughter immediately talked to her siblings, and they came up with 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 caregiving 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 caregiver to go with them.
- They could stay at one place with supports rather than travel.
- They could plan a few shorter, closer trips
- 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, she had early Alzheimer’s. She often remarked that she couldn’t wait until Rebekah was old enough to stay with them, alone. That never happened. I brought her (and later, her sister) over to the house frequently, and had them to my house. We did things together, and she had a great relationship with them and loved them to bits. But I recognised things had changed since the years my niece and nephew were small.