When is it Okay to Say, "I Can't Do this Anymore"?
Some of us older folks were raised with the idea that it was shameful to turn the
care of our aging parents or spouse over to someone else or even to ask for in-home
help. Some of us even promise that they will never have to leave their home, a promise
that was insisted upon by the same parents who told their children, “I never want
to be a burden on my kids.” These two commitments are rarely compatible.
Others, no matter what the age, can’t adjust to the idea that the time has come when the roles need to be reversed and we must act like a parent to our parents who can’t be trusted to make wise decisions, are becoming more childlike, or can no longer be responsible for their own care. We don’t want to “upset” our parents by insisting that they do something they don’t want to do, even if they are risking harm to themselves and the mental and physical health of their family caregiver.
Two friends of mine have made me ponder these conundrums a lot lately.
Friend #1
One is a 94-year-old man whose 86-year-old wife Judy (not her real name) just had hip surgery. As hospitals tend to do, she was sent home after just a one-night stay, two nights short of the Medicare requirement to have a rehab stay paid for. Her daughter, who lives 40 minutes away, had only planned to be with mom part of each day for maybe a week. Her mom had her first hip replacement years ago and recovered quickly. This is my friend’s second marriage. He was confident that he knew what to do for Judy and could do it himself, because he had nursed his first wife through cancer and taken care of her at home until she died. That was 35 years ago when he was considerably younger.
When Judy had been home for three days, I dropped in to check on them. By then the daughter could tell that she needed to be there 24/7. Both caregivers we already exhausted beyond safe limits. My friend with the new hip could not get up by herself and needed to use the bathroom almost every hour during the night. This was a two-person job, so no one was getting any sleep. She did not feel “up to” having the prescribed PT or OT, and neither the daughter nor the spouse would insist that this could help her learn to move on her own. The many trips to the bathroom were the only walking time she was getting, so neither thought a bedside commode was a good idea.
I’m not writing all the details of the story, but hopefully enough that you can get the drift of the situation that is developing here. For several reasons, the daughter also conceded to sponge baths only. When I told them that they could have in-home care help her shower and dress three days a week, my friend said adamantly, “Judy will shower when she feels like it and can do it herself!” When I asked if there were family members who could come in to help during the night while these two slept, my friend said, “I have lots of people I can call, and I will when I need them!”
After a few other failed attempts to get either caregiver to admit that they needed help and accept even one my suggestions for how it might be obtained, I left my phone number with the daughter and told her call me regardless of whether my friend wanted her to or not.
Friend #2
Example number two is a female friend of mine who is old enough to be an empty nester but young enough to still be working fulltime. Her 92-year-old father lives by himself in a cabin in the canyon that is heated with a wood-burning stove. No one in the family wants to be the one to tell him that he can’t stay there by himself anymore. His eyesight is too bad for him to drive, so my friend must drive up the canyon and back twice every time he has a doctor appointment, needs groceries, or it snows and he has to be dug out. I’m not sure why, other than “oldest daughter syndrome,” she is the only one doing this. The family does get together in the fall to cut enough wood for his stove to get him through the winter.
My friend has told her dad to be sure to take his cell phone with him whenever he leaves the house, especially when he climbs a ladder to clean the snow off his roof. Yes! He’s done that. He refuses to promise he will have the phone with him because, sadly, he says he wants to die by falling in the snow and freezing to death. My friend not only spends a lot of time doing things for her dad, she spends a lot of time worrying about him, but not enough yet to tell him, “I (or you) can’t do this anymore!”
Part two of this story is that my friend’s parents are divorced. Her mother is still alive and living by herself in a house in the valley. She has dementia that has progressed to the point that it really isn’t safe to let her live alone or drive, and yet she does both. My friend also spends a lot of time caring for and worrying about her. Mom wants to stay in her own home, and my friend seems to be waiting for a disaster to happen before she insists on an alternate plan. You can’t argue that a lot of love, selfless care, and heroic measures are being taken by my friend to keep her parents in their separate homes. But she is also exhausted and in danger of losing her own health.
What Would You Do?
What do you think should happen here? These aren’t people who don’t know there are other options or can’t afford them. Some combination of love, loyalty, duty, and maybe indecision is keeping them from being upfront enough to say, “I can’t do this anymore. For my sake as well as yours, we have to make other arrangements.”
Caregiver burnout is real. It can happen to anyone who doesn’t have a conscious plan of self-care in place. Symptoms in addition to exhaustion are depression, inability to sleep, anxiety, irritability, forgetfulness, lack of appetite, etc. It’s true that some caregivers die from it before the loved one they are caring for.
My husband and my parents have passed on, so it’s me who will become the person in
need of care sooner or later. To keep from putting my children in a situation like
one of the above, I’ve told them that when they feel I am not safe, I will give up
the keys to my car and not insist on staying in my home. I know! We’ll see if that
happens without a fight when the time comes.
I’ll give each of them has a copy of A CAREGIVER’S BILL OF RIGHTS by Jo Horne, which contains some important affirmations for caregivers:
- I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
- I have the right to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
- I have the right to maintain facets of my own life that do not include the person I care for just as I would if he or she were healthy. I know that I do everything that I reasonably can do for this person, and I have the right to do some things for just myself.
- I have the right to get angry, be depressed, and express difficult feelings occasionally.
- I have the right to reject any attempt by my loved one (either consciously or unconsciously) to manipulate me through guilt or anger.
- I have the right to receive considerations, affection, forgiveness, and acceptance for what I do for my loved one as I offer these attributes in return.
- I have the right to take pride in what I am accomplishing and to applaud the courage it has taken to meet the needs of my loved one.
- I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my full-time help.
Easier said than done maybe, but certainly worth considering before the day comes when your only option is, “I can’t do this anymore!”
For more tips on caregiving see November is National Caregivers Month, Strategies to Help an Elderly Loved One Overcome Resistance to In-Home Care, How Can I Help?