Caregiving can be an all-consuming cycle; according to Lynnette Whiteman, executive director of Caregiver Volunteers of Central New Jersey, it's essential for caregivers to take time for themselves. "When you take a break, you are a better caregiver," she says.
During late January, 2014, the world as I knew it changed forever. My mother had a severe stroke; she survived, but never recovered, health-wise. Actually, she did retain some flexibility, but for some reason, just didn't want to capitalize on this and get back to at least 80% of movement (we sent her to a total of three different facilities-it ended up being three because she would start fights with the staff and sometimes other patients, instead of focusing on getting well. The result? Her insurance company had to "dump" her residency. The sad part about this was that if she had made and shown a noticeable improvement, her insurance company would have continued paying, for as long as it took.
In between facility 1 and facility 2, my brother Ronny offered my mother (and me) the use of his former house in Columbus, Ohio for as long as we wanted (Ronny was getting remarried and locating to a new place). On the surface, this sounded great. But upon closer inspection, I began having doubts. My brother had a strict rule that there were to be no nurses, doctors or other health professionals visiting (by now, my mother's flexibility of movement was progressively getting worse-she now required a wheelchair-and I conveyed this to my brother. At some point, medical home visits were going to be essential; at that point, the family car was gone. When my mother was first in the hospital getting initial treatment for the stroke, despite my pleas, she decided to give the family car to my other brother Larry, who also lives in Columbus. Larry was not going to be involved in any way with my mother's recovery or daily care at all. Even now, I'm still mystified by that decision). I thought it was just too soon and that my mother should remain where we were, for the time being, complete the therapy and recovery first, then consider relocating later. My mother wanted to leave right away. Despite my misgivings, that's what happened.
Well, Ronny went to our current location and moved the two of us to Columbus. I had a really bad feeling about the whole thing before we left. Upon arrival at Ronny's former home, I knew it was definitely a big mistake; but I tried my best to make our new home work. There were several immediate problems: the house was way too small-it was actually tiny!; there was no room for a wheelchair, a hospital bed or any other medical equipment that we would need; we were isolated, as far as being able to get and about easily (the buses didn't even go to that area regularly and there was no longer a family car. My brother's car? He definitely had one, but remember, he was getting married again-and moving soon); and all of my brother's furniture-and everything else!-were still in the house (he never moved anything out); none of which was usable for a person with a severe stroke.
After a week and a half, my mother and I decided to return to our current location (she was constantly falling out of chairs and the bed. And there was no way she could do those tiny, steep stairs. The bathroom was out of the question). In the meantime, and completely unknown to us, Ronny had decided to have her re-committed to a Columbus facility. One day, he invited us out for a ride; he stopped at a local hospital, resulting in a wait of 40 minutes or more-and that's how we found out (I knew something was wrong because of that long wait).
What happened next became a medical legal procedure; my mom stayed at the hospital for the time, while the law had to step in to determine my mom's fate. It took a few more weeks, but in the end, the medical and legal decision ruled in my mom's favor (because she was ambushed-and blindsided). We were finally allowed to leave Columbus and return home.
And since then, I and my other brother Mike (I have four-brothers, that is) have been my mom's primary caregivers. We reside in an older home, but there's plenty of room. We were able to get a hospital bed, a chair she can sit comfortably in, a potty chair and other needed equipment. Her condition's getting worse, however; she's gained too much weight (she won't diet; I've tried. I currently just put a bit less on her plate) and is steadily getting weaker (she refuses to exercise). She swears at me and my brother like a sailor, but she always did (we're pretty used to it). She has regular doctor visits and takes her medicine daily. There are always magazines, newspapers, books, and a big-screen TV.
My brother and I are not medical nor health professionals at all, but we're doing the best we can. We were previously promised by my mother that we would be provided with some part-time, extra help, but each time a deal was close to being made, my mother has always reneged on it.
Besides my brother Ronny, my brother Mike and I have two other siblings, none of whom has offered to give us a much-needed break (to be fair, one is just not capable, but the other IS, having been a caregiver for his ex-wife's grandparents; yes, ex-wife's grandparents).
And no so-called "friends" or "good buddies" have stepped forward nor stepped up (not even a cake, pie, an already-cooked meal-my brother and I are very good cooks, but sometimes it would be nice to take a break regarding this-or even a bag of adult diapers).
So, what I and my brother do is give each other "mini-breaks" and "time-outs" throughout the week.
Many caregivers have no idea that this kind of help, known as "respite care," even exists. Check with your local Council on Aging or the U.S. Administration on Aging's Eldercare Locator (www.eldercare.gov); these two organizations can provide a connection to several respite care options close to you, ranging from church programs to national nonprofits like the National Volunteer Caregiving Network, in-home temporary services offering cooking, cleaning, medical assistance, etc., adult day care (offering social activities, meals and transportation) and residential care facilities (ranging from overnight, short-term, or long-term care).
It's highly recommended to look into respite care options as soon as you start caring for a loved one. "The mistake many caregivers make is that they wait too long," says social worker Iris Waichler and author of Role Reversal: How to Take Care of Yourself and Your Aging Parents.
There may be initial discomfort, but the benefits of respite care will outweigh it, says Whiteman. "You're doing something really positive. Asking for help and getting a break is the best thing you can do for both of you."
The respite care option sounds great, but my mother doesn't like "outsiders" in the home (she has actually cussed out and thrown out home providers and other medical help that we've tried to bring in) and she won't consider any day care (even though she'll be home in the evening).
Did You Know That.....
Nearly 24 million American women provide care for another person.
According to the National Institute on Aging, many caregivers report a new sense of purpose and closer ties to the person they're caring for (closer ties? I don't know. I DO know that I'm far more aware of my mother's anatomy than I ever wanted to), but the experience comes at a cost; caregivers suffer from a disproportionate number of health and emotional problems-from depression to panic attacks. They routinely skip medical help even when they need it, even as they scramble to get their patients to doctors' appointments (this is SO true).
As a result, caregivers have 23 percent higher levels of stress hormones than average and are also at higher risks of depression and high blood pressure.
The senior population will nearly double by 2030.
The average American caregiver is a 49-year-old woman caring for a 69-year-old. She provides nearly 25 hours of service a week and will spend at least four years as a caregiver, even though she probably works full-time (48% do) and is married with kids, according to statistics from the National Alliance for Caregiving and the AARP (We don't fit this norm at all, but we're still just as busy).
Making Caregiving Easier
Let parents remain parents (which my mom undoubtedly does).
Join a peer or support group (no time for this; cute idea, though).
Exercise (which we get a ton of, caring for my mom and trying to keep our own heads afloat).
Try to stay calm (we try to, but don't always succeed. We DO try).
Say yes to any help (what??).
Three Types of Caregiving
Someone who lives with you; regarding this situation, it's most important to: Seek a break
Someone who lives nearby; for this situation, it's essential to: Decide which days of the week to visit to avoid commuting-and-errand-induced fatigue (barring emergencies).
Someone who lives far away; concerning this scenario, it's most important to: Defer to the primary caregiver.
Sources: “The caregiver's guide to good health” by Virginia Sole-Smith-Real Simple, Feb. 2016, your world section-”How to Care for Caregivers”-All You, April 2015, the Caregiver Action Network, "Take a Break" by Kelly Burch-Spry Living, September 2017, and my own personal experiences