Dementia Care Givers

Those who are dementia care givers know the many challenges you’re facing, like losing your privacy, worrying, assisting with daily living, filling the long hours, coping with new expenses, grieving in anticipation of watching someone you love change, and family-work stress, just to name a few of the stressors.

Please know that feeling like you’re taken for granted as a caregiver is incredibly common. Surveys indicate that more than half of all regular and especially dementia caregivers feel this way, and these understandable feelings are also stressors. What also adds stress is the feeling like you’re needlessly and unrightfully complaining when you legitimately feel this way.  Here are some ways to cope with the fact that, especially for dementia caregivers, appreciation isn’t always in abundance:

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.

Believe that if you ask ye shall receive. Sometimes dementia care givers fall into routines, whether established years ago or recently, where they just expect you to cook, clean, etc. all 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.

It’s OK to pat yourself on the 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 dinner!” Acknowledge both small and huge efforts with a self-treat. Order a new book or movie. Send yourself flowers.  Give yourself the permission to reward yourself.

Learn to “see” your own invisible good acts. So much of what a dementia 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.”

Remember, the work you do is simply amazing.  You do what others can’t do.  You do what others can’t even consider doing.  And for that, you should smile — because all of us are thankful for the amazing work that you do!

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