You were all very supportive when I wrote my woeful tale of caring for my brother, who has dementia. Perhaps I had such a strong negative reaction to the situation because I’d had an earlier experience of being thrust into a caregiving situation against my will. In 2005, my mother had a stroke. After a week in the hospital, she was transferred to a rehab center. The name seems innocent enough, and the building was gorgeous, with a high-glass-ceilinged atrium, manicured gardens, and free ice cream at 3 p.m. However, this sparkling facility had a dark side. Patients were fed three non-nutritious meals a day, like prison inmates, but the underpaid, overworked staff members had apparently grown tone-deaf to one particular sound frequency—the frequency that the “call for help” sound was on. Whenever I was there, the alarms were blaring up and and down the hall, unanswered, while the staff attended to other matters.
There is no future reward after caring for an elderly person. Our best efforts end in death.
My mother needed assistance in the bathroom, and when none was forthcoming, she would slowly and unsteadily attempt to reach the bathroom on her own. One time she slipped on the tile floor, soiled herself, then spent the next hour pushing the “help” button before someone came. I knew that there weren’t enough staff to adequately run the place, and in fact, what usually happened was that an employee would come up to a family member and quietly offer their cousin or the sister or their friend to serve as a personal assistant to their loved one, for $15 per hour, in cash. I opted instead to pull my mother out of that place after a week and take her to my home 350 miles away, even though by then she had developed pneumonia.
Thus began my journey into the abyss. Imagine driving for eight hours with a semi-paralyzed ninety-year-old who had to use the bathroom at least once per hour. Her skin was too fragile for Depends, and the antibiotic she was taking gave her nonstop diarrhea. At each bathroom stop, I would have to hoist out the wheelchair, get my mother into it, race to the bathroom while she held it in, figure out to get her on the toilet (thank God one hand still worked so she could wipe herself), then get her back in the chair and back in the car. Over and over. Also in the car were my three-year-old and my sixteen-year-old, who were still adjusting to the fact that this ancient person would now be living with us.
Although I’d changed hundreds of diapers and wiped poopy bottoms hundreds of times, we care for our infants because there is the promise of something better in the future. They will outgrow this. But there is no future reward after caring for an elderly person. Our best efforts end in death. Once when I took my mother to church, a group of those selfless, giving ladies (the ones who always bake the best cookies, run Vacation Bible School, and sew quilts for sick kids) pulled me aside and said that caring for one’s dying parent is one of the hardest things a child can do. If I wanted to scream, beat the walls, and long for her death, that was all normal. And this sage advice was coming from ladies who were a lot more caring and giving than I ever was.
My mother lived with us for five months, and she had grown so frail that her skin would pop open with a mere touch and refuse to heal. I set up a portable toilet by her bed, but one time when I didn’t wake up to assist her, she fell and broke three ribs. I have to point out that she hated imposing on us and longed for her death, but only half of her body worked, so she had no choice. Of course, there were some funny moments, such as when my three-year-old was staring at Grandma’s naked chest during a sponge bath. “She doesn’t have any . . .” my daughter began. Then she looked down at my mother’s waist and said, “Oh. There they are.” At other times, we recalled my father and happy memories. We finally found a live-in married couple for her and drove her back to her home in Royal Oak, Michigan, where she lived out the remainder of her life with them. They were natural caregivers. I am not. I gladly took care of my three children because now they are fine young adults with lives of their own. But I do not have the selflessness required to be an elder-care giver. I have told my kids that I will bar the door when I get too old to take of myself and will slowly journey into the abyss on my own.
Joan Matthews
Joan, I totally understand your difficult journey, but rest assured you are compassionate and did your best. You are right, in elder care there is only decline, and the experience is one of giving without any expectations of reward. You gave your mom a wonderful gift.
Joan, you write so beautifully of such a nightmarish situation. The experiences you describe were more than anyone should be asked to cope with. You may have been thrust into it against your will, as you say, but you managed anyway! You are so right about the difference between caring for infants and caring for the elderly; with the infants you know things will get better. You are amazing to have handled this as well as you did. As Marian said, it was truly a gift to your mother! Thank you for sharing this story with us.
Joan, You took your mother out of what you saw was a terrible place and brought her to your own home – I don’t know how any daughter could have done more!
Thanx for your story and for your honesty, you should have no regrets!
Joan, such an open, unadorned account. I admire your honesty. You spoke of the unspoken, the kind of gritty details that I for one was uncomfortable sharing. After my mom’s stroke, she spent a short time in a rehab facility that was exactly as you described. This was over a decade ago, but I can still hear one poor resident/guest/inmate endlessly begging, “Help me, help me,” and no one paying the slightest attention. I told a nurse who didn’t even bother to humor me. Your journey into the abyss was horrific, yet you were strong and resilient and saw the light in moments of humor and reminiscence. Above all, you were caring; you cared. I think we are all capable of so much more than we might imagine. Hear, hear to your last brave sentence. When I get to that point, I just want a stranger to care for me, not someone I love. I guess that’s how you feel when you’ve seen the worst.
Joan, you did the best you could. When you describe yourself as “not a natural care-giver”, I think you give yourself too little credit. You had a three year old, for pity sake! She was demanding enough. Elder care is a whole other thing and it does take a patron saint to care for the elderly. As Marian pointed out, the two types of care offer different rewards and are at different ends of the spectrum.
You write very movingly of the tribulations your mother had to go through at that point of life and the many ways you cared for her. It is never easy, but you were there for her when she needed you most. Thank you for trusting us with your story.
Joan, your description of the rehab center was exactly what I experienced with my mother-in-law and father. All of the money goes into making it look good for the visitors. They are woefully understaffed and the care can be awful. Both of them contracted c-diff and had bedsores. What you did for your mother was very generous and caring. It’s a tough job, so give yourself credit for the effort you made and for finding her the caregivers she needed.
Thank you, everyone, for your kind comments and support, as always! Our household is in the process of dealing with the closing of the local high school, fighting the hordes at the supermarket for the last packages of toilet paper, and looking around at the messy house and realizing that this is our golden opportunity to clean it up! I would like to reply to your comments more thoroughly when the excitement has died down, and only the last item on the above list still remains. Stay safe, everyone.