Caring Currents

Dementia Caregiving: When Nobody Appreciates You, What Can You Do?

All Rights Reserved

What's worse "“- the many challenging dimensions of dementia caregiving, like losing your privacy, worrying, assisting with daily living, filling the long hours, coping with new expenses, the anticipatory grief of watching someone you love change, and family-work stress (to name, oh, a few) "“- or the thanklessness of it all?

Feeling taken for granted as a caregiver is incredibly common. Surveys indicate that more than half of all caregivers do. And yes, these understandable feelings are a stressor. What also adds stress: Feeling sheepish when you want to complain about this.

"I know it sounds petty to gripe about not being appreciated," apologized a friend who moved her newly widowed mother halfway across the country to an assisted living near her home. "But every little thank-you is like gas in the tank that keeps me going."

No kidding. Here are some ways to cope with the fact that caregiver appreciation isn't always forthcoming:

Remember what you're dealing with.

Alzheimer's disease, Lewy Body dementia, and other dementias are progressive illnesses that shut down aspects of brain functioning. Over time, the affected person literally becomes incapable of recognizing your sacrifices, much less acknowledging them. That's when you need to turn to other family members. Having a sounding board is critical. (Better still if they remember to tell you thanks, though [how to say thank you to a caregiver] ( is another post.)

Ask and (maybe) ye shall receive.

Sometimes caregiving pairs fall into routines, whether established years ago or recently, where they just expect you to cook, clean, et. al. without comment. Don't be shy about pointing out the rut. The person might be oblivious to your need for the emotional refueling of a kind word. Sometimes we have to spell out for the people in our life what we need.

"When my mom, who has mild dementia, came to stay with me for six weeks after her hip replacement, she started saying things I would never permit my children to say, like 'I'm hungry!'" says a friend. "I finally had to sit her down and say, 'Mom, I love you and I will do anything for you "“ but you have to be nicer to me. Can you make me feel like what I do is a choice and not an order?"

My friend laughs: "She still asks outrageous things of me "“- 'Can you please stand on your head and flip backyards?' "“- but at least she's more polite. She even says, 'thank you,' which I honestly don't think she ever would have done if I'd never spoken up."

Pat your own back.

Ultimately, you're in control of your life and your feelings. So, because you deserve it, give some niceness to yourself. Praise yourself verbally: "Wow, that was a fabulous meatloaf!" (Or hint: "Hey, wasn't that a great meatloaf?") Acknowledge your efforts with a self-treat. Order a new book or movie. Send yourself flowers.

Learn to "see" your own invisible good acts.

So much of what a caregiver does seems to happen "behind the scenes": talking to doctors, planning activities, orchestrating outings or surprise visits from friends. These are things your loved one is often unaware of, let alone going to high-five you for. But these covert efforts make life with your loved one smoother or easier -- which is its own kind of reward.

Remember your motives.

Most primary caregivers step in out of a combination of love and duty. You're not doing it for the kudos. On some level, you want to do this. That's not to say appreciation isn't useful, only that you can't let it be the thing that gets you out of bed in the morning.

Quit keeping score.

Sometimes we subconsciously keep a score of "praise points" in our head. "My husband and I do a million things for our parents (who live with us) and never hear a word about it," said one caregiver. "But my brother makes them hot soup once in six months and we hear about it over and over. It used to bug me, but now I realize that my relationship with them exists separate from theirs with him. I do what I do, and I know in my heart it's good."

Give loud applause to others.

Yes, even anemic helpers like the brother in the example above. Setting an example of appreciation --- what it looks like, what it feels like -- is another route to getting more of it yourself.

Finally, consider being taken for granted as a backhanded compliment.

If nobody's saying anything, it usually means they're happy with what you're doing. Beats being groused at.