Guide to Caring for a Parent with Alzheimer's
The complex world of caring for your ill parent means practicing love, acceptance, and sometimes even yelling at God.
By Virginia Stem Owens
I had never seen the logic in asking "Why me?" when some calamity befell me. Couldn't one just as reasonably ask "Why not me?" But when my mother began to show signs of dementia from Alzheimer's disease, I found myself asking on her behalf, "Why her?" If ever a person did not deserve such a fate, it was my mother. She was a good, generous, funny, loving person who had already suffered a number of tribulations in her life.
But deserving has little to do with disease. Like the rain, it falls on the just and the unjust. And, as suddenly as a summer thunderstorm, my mother's care fell to me as she declined into dementia and finally to death over a seven-year period. In this country, millions of people are living through similar experiences. Knowing my own desperation while I tried to help both my parents during those years, I've gathered some expectations, suggestions, and nuggets of wisdom that might help others.
Adapted from "Caring for Mother: A Daughter's Long Goodbye." © 2007 Virginia Stem Owens. Published by Westminster John Knox Press. Used with permission.
Even the most self-reliant of parents can grow ill or infirm, becoming dependent on a child. Indeed, the more independent the parent is, the harder it is for the family and friends to believe in the parent's uncharacteristic incapacity. The parent's need for help can happen gradually or overnight. The more gradual the decline, the easier it is to ignore or deny. Setting up specific markers for estimating abilities, such as balancing checkbooks or remembering medications, can help you judge your parent's need for aid with some degree of realism.
Parents may not realize, may ignore, or may deny their new neediness. If they are aware of it, they may well be embarrassed, even humiliated by their situation. Nevertheless, once parents begin receiving help, they will expect that assistance to continue as naturally as they expect to breathe oxygen. And they will be generally just as minimally conscious of the help as they are of oxygen.
The parent will often feel her freedom being taken from her, and almost surely get angry with this child at times. This child (who are we kidding?--it's you) will get angry with the parent--for no longer being independent and invulnerable, the way mothers and fathers ought to be. And then for not being properly grateful for the care you provide. The parent will not want to hear or know about any illness or difficulties you are having, any more than a small child wants to think about its parents being vulnerable.
You cannot follow even the ones you love best into their darkness. Nor should you. Letting yourself be sucked into their fear will only lessen your ability to help them.
Expect to Feel Alone
Friends and relatives may offer their sturdy support, but they cannot bear your pain for you. Not your friends, not your own children, not even your spouse. It is both unrealistic and unfair to expect it of them. When they offer their help or comfort or companionship in your grief, accept it gratefully, but remember that their lives are distinct from yours. Which is as it should be.
If You Need to Yell, Yell at God
The only one you can always rely on to listen to you and understand is the Spirit of God. And sometimes you're mad at him. I suspect, however, that you're safer being frustrated and angry with God than with your aging parents. He's used to it; he can handle it. So yell at him, not them. Having someone to yell at is only one of the advantages of being aware of God at this time.
It becomes harder to remember why or how you loved the person you're caring for in the first place, or why their failing flesh should be reverenced. All your energy goes into the utter drudgery of the thing. The person in the bed or the wheelchair more than anything needs to know she is not alone, that you are with her, still loving her. And you likewise need to know that someone, even if unseen, realizes what you're undergoing and will stick with you.
Let Your Feelings Flow
You will worry about the crosscurrents of your feelings, especially the constant conflict between anger and guilt. Plenty of people will tell you not to worry, especially about guilt. I'm not sure they're right. Even this anxiety seems to be part of the caregiving experience. The truth is, you will worry your conflicting emotions like a dog gnawing a bone, regardless of what I or anyone else tells you.
Watch for Moments of Grace
I offer one of the best pieces of advice I have gotten during this time: Don't make it worse than it needs to be. Take care not to savor your pain. When you have a good day, tell everyone. Concentrate on watching out for any gift, however small and from whatever improbable place that it might fall in your lap, from a convenient parking place to the use of a friend's Colorado condo for a respite week. Don't let fleeting moments of pleasure go unpraised. And when there's no pleasure, be glad of the flinty truth of pain that lets you know that you are, as Henry David Thoreau once said, "fronting the essential facts of life."
Recognize What Endures in Your Parent
Though toward the end, my mother lived in a perpetual semi-dream state, unable to articulate a thought or to communicate except by gesture or look, even then something essential remained of her self. I was there, it occurred to me, if for no other reason than to recognize that self, to say yes, this is my mother. I wanted to be able to comfort her with the knowledge that, even in her last suffering, she continued to teach me. What she had feared would be a burden has turned into a boon. Where else but at her bedside have I learned, as the psalmist put it, "to number our days that we may apply our hearts unto wisdom"?
Learn to Live with Uncertainty
Learning how to die--or how to care for someone who is dying--means learning to live with not knowing what to do or when to do it. With not knowing how much longer, or even if, you can hold out. I live in time differently than I used to, floating along rather than swimming against the current.
At times I longed to be free of my seemingly interminable vigil. If only, I thought, I knew when to expect the end. But that hope was a delusion. If the end had come the next day, I would not have felt liberated from the excruciatingly slow, painful loosening of our ties.
Following his more or less solitary sojourn at Walden Pond, Henry David Thoreau wrote out his reasons for undertaking the experiment. "I went to the woods," he says, "because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived." In fact, if, like Thoreau, you're interested in fronting the essential facts of life, you're better off going to a nursing home instead of the woods.
My mother has been my Walden Pond.