A few years ago, my husband and I traveled to San Francisco to visit our long-time friends, Dan and Mary, whose lives had been turned upside down when Dan tumbled down a very steep flight of stairs and sustained several serious injuries.
While Dan was in the hospital, he was diagnosed with PSP––Progressive Supranuclear Palsy, a rare, and horribly aggressive form of Parkinson’s. After he recovered from the worst of his injuries, they were told he would need to move into an assisted living facility, and he would never be able to return to their home.
During our visit, Mary and I managed to sneak away for a little one-on-one girlfriend time. When I asked her how she was doing, she said, “I’m living a dual life. It’s tiring, but I’m managing it.”
At that point, Mary was 76 years old. She went to yoga six days a week. She was still painting and continued being an active member of an artists’ studio. She belonged to three book clubs, and she was spending five hours every day with Dan at the assisted living facility.
When she told me everything she was doing, I said, “Mary! This is too much! If you continue to do this, you’ll collapse. You’ve taken over 100% of the responsibility for maintaining the house and the garden. You’re managing Dan’s medical care, as well as purchasing and delivering all of the supplies he needs. You’ve added all of this plus five hours of visiting time each day to a schedule that was already full and demanding. I don’t know how you are still standing, let alone functioning!”
She said this was how she was caring for herself, and she insisted she could and would continue to live her life on her terms. She refused to give anything up, including her daily 5-hour visits with Dan.
Another Friend––A Different Reaction
When our friend Kyle was diagnosed with cancer, he was told he had six to eight months to live. Ginny, his wife, accepted that Kyle was dying, and she willingly gave up everything she loved doing and focused all of her time and energy on his end-of-life care.
Then he didn’t die.
Three years later, Ginny realized her own physical and mental health were failing. She had gained weight and lost a lot of energy and strength. She had also started feeling angry, resentful, and bitter that Kyle continued life-extending treatments that resulted in horrible side effects for him and a tremendous amount of work and stress for her.
When I ran into Ginny as we were entering an exercise class, I exclaimed that I was thrilled to see her there. She said, “I decided I couldn’t continue putting my life on hold while waiting for Kyle to die.”
She told me she had hired respite care for Kyle three days a week. She had rejoined her volunteer groups and would be coming to exercise classes again. She had even given herself permission to meet friends for coffee and lunch, and she wanted to know when I would be available.
Kyle lived two more years. When he did die, Ginny was sad, but she wasn’t angry with him anymore. She was still connected to her friends, and she knew she would be able to have an active, happy life as a single woman.
Finding a Manageable Balance
Acceptance may be the key, but it’s hard. Once something happens to someone you love, whether it’s an accident or an illness, you eventually accept that their life and your life with them is different now. It will never be what it once was. Wrapping your mind around the fact that nothing will ever be what it used to be is hard.
In the beginning, Mary refused to allow Dan’s illness to change her life. As his disease progressed, and he needed more and more, she eventually realized she was on the brink of physical and mental collapse, and she needed to make some changes.
Eventually, she reduced the number of days she worked at the studio. She now goes to yoga three times a week instead of six. She belongs to one book club instead of three. She hired someone to help in the garden, and she now has dinner with Dan four evenings a week.
Both of my friends struggled to find balance. In the beginning, Ginny sacrificed all of her own needs to take care of Kyle. In Mary’s attempt to do everything and sacrifice nothing, she drove herself to the brink of burnout.
I tell these stories to illustrate that every person’s self-care needs are unique. There is no “one-size-fits-all” prescription for caregiver self-care. When you commit to caring for another person, regardless of where they live ––with you, in their own home, or in a facility, you will end up making sacrifices to help them. Finding a balance that works for you may take time, trial, and effort.
Be patient with yourself as you figure out what you need, what you want, and what you are willing to sacrifice in order to care for yourself while meeting the needs of your care receiver, and please believe that whatever you do to care for yourself is NOT selfish!