Asking for Help: Finding Support When Caring for a Loved One

Excerpted from When a Loved One Has Dementia: A Comforting Companion for Family and Friends © 2021 by Eveline Helmink. Translation copyright © 2023 by The Experiment, LLC. Reprinted by permission of The Experiment, LLC. Available everywhere books are sold.

“Dad, why did it take so long for you to admit that the two of you couldn’t cope on your own?”

“If I accepted help, I had to concede that I could no longer manage by myself—whereas I could look after us both. Or so it seemed. I knew I dropped the ball from time to time, but I kept thinking, all right, I’ll buckle down and deal with it somehow. Until I got to the point where I started dreading each new day. I’d be pacing up and down the living room, at my wits’ end. I started calling you guys at all hours because I simply didn’t know what to do.”

For a long time, asking for help and receiving support remained sensitive subjects for my parents. It was difficult to make them see that we had to get some form of assistance, even if only around the house. We arranged for domestic help and private agencies to send somebody over to sit with my mother while my father went out, but it wasn’t exactly warmly received. It was only when my mother began to become confused at night and when her frequent crying fits during the day left her withdrawn that my parents’ defenses began to crumble under the weight of the advancing dementia.

We can’t cope on our own–my parents can’t, we can’t, none of us can. That’s one of the biggest lessons I can share from this experience. In my family, we missed out on a chance to act sooner, like so many others in our position. Asking for and accepting help requires vulnerability and openness, both of which are at odds with the desire to protect and maintain one’s independence. It’s a complex maze that’s not navigated lightly.

But the stakes are high. In the short term, it’s not easy to allow other people into the crude reality of life with dementia. In the long term, however, it’s vital. Unless you admit others, loneliness awaits…along with the heavy burden of nonstop responsibility and alertness, physical and mental problems due to not having enough me-time, loss of social contacts, and blurring of boundaries between what you want to give and what’s sustainable in the long term. As a caregiver, you’re entitled to support. Perhaps not according to the letter of the law, but certainly according to the universal laws of compassion.

To this day I’m sorry that my mother so stubbornly rejected any offers of help, and that my father was determined to go it alone. My mother, especially, couldn’t get herself to accept assistance; her character and the dementia made for a volatile mix. Had my parents become acustomed to support and outside visits at an early stage, both of their lives might have been easier. Seeing another familiar face, that of a professional caregiver or home health aide, for example, can be invaluable during the later stages of the illness.

“I can manage it on my own” sounds noble. Coping alone is shrouded in a weird kind of heroic aura. The ability to shoulder a heavy burden is a sign of discipline, productivity, and composure–qualities that are directly linked to “success” and “status” in the Western world. In individualistic societies like ours, people are raised on the idea that if you work hard enough, you can be in control of your life. We’re brought up to derive a certain sense of self-worth from the burden we can carry. Wow, you’re so strong, you’re so independent. Sure, it’s satisfying to achieve, solve, or create something on our own, which boosts our confidence. There’s certainly nothing wrong with stepping up your efforts for a set period of time. But ultimately these efforts must be proportionate to your downtime if you want to provide long-term care.

Perhaps you recognize the following. You don’t ask for help, because:

• deep down you’re convinced that your way in the only right way,
• you think it’s your duty to take care of the other person,
• you simply never learned that you’re allowed to call on others, and
• you were taught that you should never “owe” anybody.

There’s an alternative to being so independent and strong. Asking for help or indicating that you can’t do it all by your-self can be extremely powerful, too. You’re taking charge of your own well-being and, by extension, making sure that you remain available to others. Recognizing that we’re all in this world together is a sign of emotional maturity. Indicating in clear and direct terms that you could do with a helping hand is not a sign of weakness. It’s important to examine your ideas about asking for support. Nicci Gerrard is right when she states, “To be human is to be dependent; this isn’t a weakness but a necessary condition of being alive. We are born helpless and we die helpless, and in between is the continual flux of giving and receiving, of being at each other’s mercy, of helping others and of being helped in our turn.”

How do you feel when you’re able to help another person? Nine out of ten people answer this question with terms like“seen,” “fulfilled,” “social,” “supportive,” “relieved,” “connected,” and “valuable.” We often don’t stop to think that we may be doing somebody a favor by accepting help. Being open to support gives others a chance to feel helpful and useful and to gain new experiences.

Don’t set the bar needlessly high. It’s all right to ask for help with things you feel you could or should do on your own. The support you ask for also doesn’t have to be practical. You could even say to a friend, “I need to get something off my chest; would you mind listening to me?” I’m always pleased when my father is very specific about his needs, whether it’s buying new clothes for my mother or paying her an extra visit because he wants to do something else that day. Of course, my pleasure.

Giving help

If you don’t need help yourself but you’re not sure what you could do for someone else, why not ask a very direct question: “What’s useful to you at this moment?” Not long ago, I heard from someone who’d kindly offered to go and get groceries, but it turns out that getting groceries was the primary caregiver’s one opportunity to leave the house for awhile. Instead, the helper spent an hour watching TV with the person with dementia, so his partner could stay out a bit longer.

You’ll work something out together:

1. Even when your offer of a helping hand isn’t immediately accepted, be patient and continue to make yourself available.
2. You could, for example, announce that in a week or two you’ll come back and ask again. Stress that it’s no effort, that you mean it, and that you’re doing it out of respect and regard for the other.
3. Another good strategy is to offer something very specific, like mowing the lawn or dropping off a homemade lasagna.

The rejection of your support is more about a temporary prolonging of self-preservation and autonomy than it is about not wanting your help. Give it time.

Finally, the question “How are you doing?” is often too broad, too much. From now on, I suggest we ask each other, “How are you doing right now?”

Eveline Helmink is a licensed coach practitioner, working one-on-one with clients on themes such as grief, change, and acceptance. She is also a journalist, magazine editor, and the author of The Handbook for Bad Days. She works as an editor in chief at the international media brand Happinez, which shares insights and inspiration for personal growth and a meaningful life. Her mother suffers from dementia. She lives in Amsterdam, the Netherlands.

Excerpted from When a Loved One Has Dementia: A Comforting Companion for Family and Friends © 2021 by Eveline Helmink. Translation copyright © 2023 by The Experiment, LLC. Reprinted by permission of The Experiment, LLC. Available everywhere books are sold.