How to care for an aging parent: Lessons from my mother - opinion

I’ve long been aware of my inadequacies as a parent; for that I have my children to thank. My inadequacies as a child are a more recent discovery, courtesy of my 99-year-old mother.

But I’ve gotten ahead of myself. First some Yiddish wisdom: Escaping a storm, a bird began flying her four babies across the ocean. “When I am old, will you do the same for me?” she asked the first.

“Of course,” answered the nestling. “It will be my honor.”

“Liar,” said the mother, and dropped the baby into the waves below. The same with the second and third.

The fourth replied otherwise. “No, Mother,” he said regretfully, “then I will have children of my own, and I shall be caring for them. I won’t be able to care for you as well.

“You at least have told me the truth,” said the mother, and placed the chick safely on the shore.

It’s unlikely my mother’s ever heard that parable, yet she’s managed to capture its essence in a single sentence: “How can it be that one mother can take care of four children, but four children can’t take care of one mother?”

We do, of course, my three sisters and I, but in my inability to respond to her indictment in a way that would help her understand the lengths we go to in caring for her and ameliorate her despondency at the onset of dementia, I realize I’ve received no preparation whatsoever to deal with the aging of a loved one.

This is a realization that triggers some serious soul-searching as we approach Yom Kippur and the prayerful recitation of the verse “Cast me not off in my old age; forsake me not as my strength fails.”

In the process, the answer to my mother’s question comes to me: Those of us being entreated to care for the elderly understand precious little of life as they experience it.

How can we be expected to respond to their needs unaware of them? And until such time as we are, it will be all but impossible to fulfill the commandment to honor our parents – to carry them across the ocean, so to speak.

IN MY imperfect effort to do that, I traversed the ocean 10 times during the last two years to spend time with my mother. Reflecting on those visits, I recognize that she has continued to impart life’s lessons to me, even in her decline.

As none of us are getting any younger, but more of us are living longer, I thought others might find what I’ve learned useful as well. Our tradition is clear regarding the sanctity of revering the aged. Midrash Vayikra Rabbah 9:3: “The respect one gives to the elderly is akin to showing reverence for God.”

Less clear is how we go about manifesting that respect, particularly when the individual is, well, let’s say “less present.”

Lessons on how to care for an aging parent

I share here, then, what I’ve glimpsed of the world my mother inhabits, formulated as a Living Will of sorts – not a set of directives for how to let me die but a manual letting others know how I think I’d like to live should I end up hanging around long enough to need their care.

• Above all else, do not infantilize me.

Dignity and a sense of self-worth remain vitally important to us long after we are no longer capable of caring for ourselves or making wise choices - which, by the way, I will insist I can do long after I can’t. I know it’s your responsibility to keep me safe and prevent me from endangering others, but I expect you to treat me as nothing less than the productive, creative, and independent individual I always was. Remember that I am used to being listened to, not told by those 70 years younger than me what to do, when to take my medicine, put in my hearing aids, or relieve myself. It’s understandable, then, that I will lash out at anyone attempting to make decisions for me when I still believe I can make them for myself. So do what you must, but with sensitivity, empathy, and compassion.

• Understand my state of mind.

A debilitating jumble of loneliness, emptiness, and sensed obsolescence gnaws at me continuously. Try making me feel differently if you must but don’t lecture me about the pointlessness of feeling sorry for myself. Other than infrequent visits from children, grandchildren, and great-grandchildren – which, I confess, no longer move me the way they used to – I have nothing to look forward to.

My friends are gone. At least I think they are. Honestly, I don’t know who’s alive anymore and who isn’t. I can’t even remember their names.

Books? A string of words I have trouble making sense of.

Movies and television? The pictures move too fast. All you can do is provide me with fleeting moments of happiness.

A kind word, a gentle caress, a game of Scrabble in which I am permitted to make up my own rules as we play.

• Don’t ask me if I remember.

It’s horrible knowing I’m losing my mind; your reminding me of that by asking questions I can’t answer only makes it worse.

I’m confused and disoriented, frightened of what will be, and ashamed of what I’ve become. You say it’s not my fault, but I can’t help believing it is.

Sometimes I pretend to remember something to hide my embarrassment, but I’m really all mixed up – even about who my children are and how many I have. Pictures. Maybe pictures will help. Try showing them to me – unless and until they cause more anxiety than pleasure. Trying to jog a memory that doesn’t exist only creates stress.

• Don’t correct me.

My perception is my reality and it’s stronger than yours, so there’s really no point in our arguing – unless you’re convinced that my holding on to some misconception is causing me more pain than a reminder that my memory is vanishing.

So, if you call me every day and I insist you never do, try to set the record straight. I’d rather know I’m forgetful than think I’m unloved. But otherwise, please don’t confuse me with the facts; it’s only likely to trigger rage.

• Answer my questions as though it’s the first time I’ve asked.

It will drive you crazy when I ask you the same thing five times in 10 minutes, please understand that I have no recollection of ever having posed the question never mind hearing your answer. I know it will be hard for you not to explode with, “I just told you for the umpteenth time!” but I’d ask that you take a deep breath instead.

• For your sake and mine, promise to remember that the real me is the one who showered you with a lifetime of love, not the dybbuk showering you with undeserved abuse who infested me only recently.
• Dementia is a brutal disease. It’s not only about memory loss and confusion. It’s also about transforming personalities and often results in cruel and aggressive behavior. I might not be able to protect you from that, but I want you to know that the real me would never say those hurtful things. In balancing your care for me with meeting your own needs and those of your family, I insist you err in favor of the latter. And don’t feel guilty over not sacrificing your happiness for mine. That is nothing I would ever want you to do.

THIS YOM KIPPUR, then, I will be aware as I have never been before that for those charged with caring for the aged, it is empathy – the ability to share and understand the feelings and experience of another – that is the key to opening the gates of heaven. 

The writer is currently engaged in establishing the Navon Center for a Shared Society. He has served as deputy chair of the Jewish Agency and World Zionist Organization and was the founding director of the Herzl Museum and Educational Center. More importantly, he loves, honors, and reveres his mother.