Some of you may know that I’m a caregiver for an elderly woman with Lewy body dementia. Normally I wouldn’t write about my personal life and I’m not going to give a lot of details here. However, This article in the New York Times (August 4, 2017) entitled “Caregiving is Hard Enough. Isolation Makes It Unbearable.” hit me as something worth noting in that it was so accurate about the rough life of a caregiver.
The Burden of Caregiving
Since people are living longer, the number of sandwich families is on the rise. By sandwich, I mean those people who set free their kids just in time to take in and begin caring for their elderly. This sandwiching is made worse with dementia as the elderly turn child-like again without the fun or the wonder. Petulant, argumentative, stubborn, and helpless come to mind as good descriptors. For those suffering from Lewy body dementia, paranoia comes along with imagining conversations or arguments that never happened.
People talk about the golden years of aging which I think starts around fifty and goes until the joints give out. I don’t know about you but I planned my post-child days to be fun and free. My husband and I finally have enough money for a little traveling. We bought a camper and his job allows a week away here and there throughout the year. Our three-day weekends were golden. We also took over the old bedrooms and filled them with hobby materials because that glorious moment of “when we have time” had finally arrived. Meals evolved into creative efforts and the nights, oh those times of dark sweetness returned when we didn’t have to worry about teenage ears hearing things that were none of their business.
For us, the fun and free didn’t last long. The camper sits idle now. My husband and I fight for any private time because many of our questions and issues can’t be discussed around our mother. We can’t even talk about daily job activities. If she hears, she “turns weird,” offering money she doesn’t have or opinions steeped in enough old school racism and wrong thinking to make any modern person cringe. Dementia steals her memory and replaces it with falsehoods. Arguing about fats is pointless. Entertaining doesn’t happen. Food becomes bland and strictly American style since our patient can’t tolerate spices and won’t eat anything falling in her definition of “foreigner food.” Her mobility is extremely limited, stopping most shopping or fun outings that could include her. My work becomes peppered with a series of interruptions as she can’t find the remote, needs help with the TV, yells at her dog, needs her blood tested, or attempts to clean dishes. Banging and breaking sounds make me come running.
I’m not criticizing this woman. She can’t help herself. She hates what is happening as much as I do but here we are locked in a depressed caregiver/unhappy patient relationship. In fact, several of my friends are in similar positions. They take care of a beloved relative and in turn lose personal space and freedom. We used to get out together. One by one each of them (and me) lost the ability to have a few hours away from home. The elderly person couldn’t be trusted alone anymore.
In Indiana, this idea is a joke. Everyone says that the caregivers can suffer terrible health issues because of the stress of dealing with an ailing patient. Accidentally missing a medicine time can cause floods of guilt if the patient falls ill. Any emergency could become a life or death situation where painful choices must be made. Death is always the distant specter, biding his time and bringing with him as sense of failure. If the patient dies, was it something I botched up?
In addition, when the caregiver is out of the house, they hover over their phones waiting for The Call. The one that tells them the sitter can’t handle the patient or she’s fallen or is convulsing. I can’t remember the last time I’ve gone to a movie and turned my phone off. Now it sits under my thigh so I feel the vibration and can make a hurried exit to answer. And I can’t turn it off. EVER. The missed call could be one of life and death.
So, all these studies and guidelines recommend time away for the caregiver: respite care. What they don’t state is that insurance won’t pay for it. Two companies that I use each charge $22 an hour sitting fees that do not include the handling of medications. That’s useless for having them work with a patient that might need an insulin shot or heart medication. Nope, if that is needed, the cost is $100+ for one nurse visit to spend five to ten minutes giving medicines. In addition, a three-hour date night (dinner $30, movie and drink $35) now costs $131. Many can’t afford that expense once much less as a once a week break.
Thankfully I have a partner who gives me some nights out. The down side is that I go with friends or by myself but not with the man I most want to be with.
How about vacations from caregiving? This concept is also highly recommended. Lovely idea but few assisted living facilities offer it. They may allow you to put your mother in for a minimum limit of two weeks but only if they happen to have a room at the moment. In short, you have to hope someone there dies right around the time you need the room. In addition, the caregiver must through multiple hoops of doctors’ visits, assessments, medical scripts, and more for the patient’s stay. I understand they need this for insurance purposes but the burden on the caregiver is still huge.
The cost is of the stay is also prohibitive because it must be at least two weeks. While I understand their economic concerns, I’d be happy with a three-day camping break now and then. By the time I kennel my dogs and pay for respite care for my patient, I can’t afford the vacation.
What Can Friends Do?
I’d never ask any of my friends to come sit with my elderly relative while I went out partying. It simply doesn’t feel right. But a time came when my husband needed surgery and the respite helper failed to be available. My friend showed up at 5 am to help out. I wonder if she knows how very special that event was to me. When a hard event happens to a family, like a funeral, critical appointments, caregiver sickness, or a job stress, ask if you could take care of the patient for just a few hours. It means the world to the caregiver to have one less factor to worry about.
You can also help in small, wonderful ways. Call them to chat for a bit. Sometimes they just need to hear another voice or rage a little to destress. Don’t expect them to go out with you but make sure the offer is always open. Best line in the above article was “Don’t invite me to lunch—you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.” Just knowing that the world isn’t completely passing you by can make the difference between a good day and a horrible one.
So what is the point of this blog? Be kind to someone that you know is in a caregiving role. You have no idea how rough it is until you’ve had to take on this overwhelming responsibility. Yet the small favors from you, the phone call, the thinking-of-you card, the visit, makes their tremendous burden a little easier to bear.