For nearly eight months after my father was diagnosed with Alzheimer’s, my mother cared for him at home. He had been going down hill for years, but we stayed in denial as long as we could. So by the time his disease was recognized it was quite advanced.
In the years before his diagnosis, my mother accompanied him to college classes and wrote most of his papers. It was my father’s heart’s desire to earn a college degree. But as his illness progressed, the demands of his schooling coupled with the demands of his caring became too much for her. She final begged his physician to tell him he could not continue school, because she was unable to stop by herself.
After his diagnosis my father deteriorated rapidly. It was as though; now that we knew the truth, he could relax and let nature take its course. My mother tried putting him into a daycare program but this was short-lived. An educator by profession, my father began lecturing the other patients with nonsensical strings of engineering phrases. When they failed to pay attention he got angry. The staff could not handle his tempestuous outbursts and soon he was expelled.
Home all the time, my father was a handful. Like a large baby, he had to be dressed, bathed and fed. Several times he wandered off from home and got lost. Later, he became incontinent and unmindful of where he did his business. My mother, blind in one eye from a brain tumor surgery and fighting a recurrence of breast cancer, began to show signs of the strain.
I arranged to have a home health aid visit once a week. This proved unsuccessful. My mother treated the woman like a guest. Thursday mornings were spent scurrying around trying to get my father cleaned and the house presentable before the aid arrived. I asked my mother to let the aid help her. But she could only let the aid sit with him while she attended to other tasks.
Finally I was able to get my father into a respite program that placed him in a nursing home for three days while my mother enjoyed a needful break. Of course he never came home again. Only by stopping was my mother able to realize that what she was doing was impossible.
My mother’s handling of my father illness was neither unique nor unusual. It is not easy to ask for help and equally difficult to accept it. I understand this because I hate asking for help myself. Partly it’s that ethic of rugged individualism, declaring independence and self-reliance. Also there’s a touch of pride, the assumption, perhaps rightly, that no one can do it as well. And then there is the privacy issue, a strong aversion to hanging out “the dirty laundry.” And let’s not forget the fear of being turned down. A friend of mine recently had a bout of food poisoning that gave her a serious scare. When I asked why she didn’t call me, she countered that she had asked help from a friend who turned her down and was afraid to try again. And don’t we always pick the person who will confirm our worst fears! However, when it comes to caring for the dying, it is essential that we learn to ask for help as much and as often as needed.
Caring for a person who is dying is not a solo sport. There is simply too much for one person to do: medical appointments to attend, scheduling to arrange, equipment and medicines to procure, new treatments to research, family members to update, and on top of all that, the daily list of a normal busy life. When a dying person becomes bed ridden, the list can expand to include bathing, toileting, moving and adjusting, daily laundry, special meals, drug administration, wound tending and continuous monitoring.
And then there's the emotional component. When my mother was dying, I went back to help her tie up loose ends. She was sharp of wit, ambulatory and able to handle her own hygiene. All I needed to do was drive her around and fulfill her requests. I don’t think I even did much cooking. Yet very soon, I became an emotional basket case. Was it the cats peeing in my bedroom, the constant blare of the radio, the deer-in-the headlight looks from my brother and sister-in-law as they disappeared into woodwork in their part of the house, or was it that heart wrenching moment when I asked her about tossing a photocopy of one of her sketches and she sighed and said, “I guess I’ll never get to that project.”? My back went out ten days after I arrived and I was on a return flight to San Francisco in less than two weeks. The relationship with my mom was admittedly tricky. But whose isn’t?
I found helping my friend Marianne to be a much better experience -- partly because I knew the terrain, but mostly because our team was better organized. It also helped that she was in the hospital with all her bodily needs handled by professionals. You could not ask for a more grateful and gracious patient, but watching her suffer was awful. Coordinating with her brother and sister-in-law, her nephew, my husband George, and numerous friends, we were able to be with her most days, and many nights. In between we sorted through her possessions and dismantled her apartment, a very weird thing to do while she was still alive, but necessary given the time constraints of her out-of-town family. Our deathwatch lasted barely two weeks, and yet we were all spent when she finally died.
Asking for and accepting help is essential to a caregiver’s health and survival. Becoming comfortable with it takes practice and a change in thinking. You need to keep reminding yourself that you can’t do it alone, and that trying to do it alone is foolish and dangerous. Exhaustion leads to mistakes, to accidents, to errors in judgment, to illness and even death. If you become sick who will take over? Consider that learning to receive is part of the soul’s journey and certainly part of getting older. It can also be a profound gift that helps us bond with one another. It can deepen our relationship, love and affection.
If you have aging parents, or frail siblings, consider doing some advanced planning. Have a family conference, discuss what is be needed and who is willing to do what. Those who cannot be physically present may assist in others ways, e.g. money, administrative, research and communications.
Friends can be an important resource. Cultivate your friendships with kindness and generosity. Some will be able to help and others will not, and you can never know which ahead of time. When you do need their help, make a list of tasks covering a wide range of commitment levels so that people may participate, as they are able. Tasks like preparing meals, grocery shopping, housekeeping, gardening and laundry come to mind. You can organize using the website
Lotsa Helping Hands. Some people may find the technology off putting. So try a variety of strategies and use whatever works.
If you find you have time to breathe, to go for a walk, take a bath or get a decent night’s sleep, you’re on the right tack.
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