When you are a caregiver you may hear and read the following admonitions a lot:
Take care of yourself!
Get plenty of sleep!
Find time to do things for yourself!
You may hear people use the metaphor of the oxygen mask on an airplane. You have to put the mask on yourself before you help someone else with theirs. The idea is that you cannot take care of someone else if you don’t take care of yourself. Well, I know, like many other caregivers, that that advice can be darn hard to follow and it is, in fact, quite possible to take care of someone else while neglecting yourself. Is it wise? No, but it’s doable and caregivers do it all of the time.
I was a caregiver for six and a half years for my best friend.
Every morning at 6 am I arrived at his home that was three doors down from mine. I thought this was too early to be up but he liked it that way so I indulged him. I would stand on the bed above his head and pull him up toward the head of the bed. Then I would climb down and put my hand on his hip bone to keep him where I had just adjusted him as I used the electric controls to raise the head of the bed. He was nearly quadriplegic and it was a day-long battle to keep him from sliding down toward the foot of the bed. Once he was settled, I would help him with his medications, empty the catheter container, and visit with him until another neighbor came to bring him coffee and feed him some cereal. I would go home then and get my children ready for school. After I dropped them off, I would return to his home to see what he needed and chat for awhile. I might settle down with my laptop for a bit or run some errands before it was time to make lunch. After lunch, we might download a show before I picked up my kids from school. I would stay with them for awhile then go back to check on my friend before I started dinner at my house. After homework and dinner, I would return to my friend’s house to visit with him for a little while before helping him to bed. Occasionally, I would watch part of a movie with him before lights out. When I returned home for the evening, I would try to spend as much time as possible with my kids before they went to sleep. My oldest liked to stay up until midnight doing homework; I would visit with her a lot until she was ready for bed. Usually between midnight and one, I would go to bed and start over again at 6 am. Every weekday it was the same unless there were doctor visits, trips to the ER or a problem in the middle of the night.
It was a crazy time in my life but I did it for years.
My friend’s only other option would have been a low-cost nursing home. He was a young man and would not have done well in that type of setting. He thrived in his home and he had a tremendous effect on many people in the last years of his life. It was beautiful to be a part of it. That being said, caregiving definitely took its toll on me. If I had read that well-meaning advocates suggested that I needed to take better care of myself and carve out some alone time, I would have laughed. There was very little time for me. My friend’s disability income was so low that it wasn’t possible to hire additional help. People often say help is available but that is not the case for everyone. Many people are isolated and do not have family to help out. Even those who can afford care are often extremely busy. I had a friend for whom the court awarded 24-hour nursing care but caregivers cancelled on their shifts frequently; the family often covered the graveyard shift on their own. Many agencies have trouble covering every shift. Unless the family caregiver has unlimited resources, he or she will be left holding the bag a lot.
So what is it that caregivers really need? Do they need people to remind them to find time for themselves? Some do. Not all caregivers have a demanding hands-on schedule to manage. They might benefit from reminders on self-care because they can budget the time for it.
But self-care for a lot of caregivers means eating food and sleeping for a few hours every day. What this group needs is help. Actual hands-on help.
Someone who can come in and do laundry. Someone who can help with driving a loved one to a doctor’s appointment. Someone who can do meal prep and stay long enough to serve it and clean up afterward. Physical assistance is what is missing for many caregivers. That is where the United States has to put some effort.
Unfortunately, there is little financial incentive for the government to become involved in aiding caregivers as there is no return on their investment. Health insurance companies should take an interest because the demands of caregiving can have serious medical consequences for the caregiver. Maybe we need to start teams of helpers with grant money. They can be paid or they can be volunteers but they have to be committed to consistent help. It may take a village to raise a child but we need the village to help out with our terminally ill and aging. We have to do more for our stressed caregivers.