Things I Wish I'd Known PDF Print E-mail
Written by Susan McElwain   

Susans mother smiles during art activity crop

Dementia Care Tips

Do you love someone with Alzheimer's Disease or another type of dementia? I've been a dementia care partner three times – first with a close friend, and again with each of my parents. The most important thing I learned? To care for someone with dementia, you need help. If you don't get it, then exhaustion, burnout, and stress-induced illness sneak up on you. So get help!

Find legal help

First, get legal help. Everyone needs a will, a power of attorney, a living will, and a power of attorney for health care. Do it right away, not just for the patient, but for yourself as well. To manage finances, a debit card in the patient's name keeps an automatic record of every expense.

Access local and online support

Next, most local Alzheimer's Associations run support groups. Patients have fun in one room while their care partners in another get lots of helpful information. Group members share experience: how they convinced someone to bathe, eat, or take medication; how they gave someone a sense of purpose; how they both had some fun or managed to get a little rest.

Teepa Snow is a masterful caregiving trainer with classes online—some free on Youtube, others for a fee. I wish I'd heard her sooner, because when my friend kept searching for her deceased children, I reminded her they died.

Why? Did I want her to grieve all over again? No, I was trying to reorient her to the present. I didn't realize that mentally she was back in her thirties. Instead, I should have cheerfully said, "They stayed after school for a scout meeting!" As my wise parish nurse assured me, "That's not a lie. It's a treatment." The patient cannot come back to your world, so you must enter theirs.

Incidentally, that could also be why your parent may not recognize you. It's not that he doesn't remember he has a child; it's just that in his mind, you are ten years old. Or his wife is still thirty. Or he still goes to work in the mornings.

Look for creative arts activities in your community

Any art or music help is a godsend. Here in Cleveland, the Carolyn L. Farrell Foundation provides free, regular art therapy for dementia patients and care partners. My mom loved her "Art Party," where she could live in the moment and socialize like her healthy self. "There she is!" I thought, as she complimented another patient's sweater. Mom glowed with pride when we hung her artwork. Check with your Alzheimer's Association or search the web for art therapy near you.

Two books you may find helpful

Books can help. The best is Creating Moments of Joy, by Brackey. It's small and written in short chunks. Open it anywhere and find something useful and encouraging. Near the end of Mom's life, the book Final Gifts by Callanan and Kelley made a huge difference.

Other tips:

  • Whenever possible, answer the patient with "Yes." Or, "Yes, and. . . ."
  • Avoid no's and criticism. Patients forget the content, but absorb the bad feelings.
  • Praise them for anything worthy of praise.
  • Thank them for helping you – to dress them, etc.
  • Call hospice early. Their longer-term palliative care division makes home visits.
  • When you are uncomfortable with someone's treatment of the patient, speak up.

Find something your patient loves to do:

  • Headphones with their favorite music
  • Coloring books and markers
  • Simple jigsaw puzzles
  • A teddy bear, a baby doll to hold and rock
  • Towels to fold, dishes to rinse or dry
  • Pots to stir, cookies to decorate
  • Simple, happy TV shows from the past, old movies

Find something your patient loves to talk about:

  • A big fish caught, a close game won
  • Time in the army, their wedding day
  • Sweaters knitted, pies baked, furniture built
  • Their job or career
  • Their husband or wife, their children

Remember:

  • Listening to the same story repeatedly can be okay if you decide it is.
  • So can answering the same question twenty times.
  • When the patient objects, the problem can almost always wait until later.
  • If you lose patience, forgive yourself. Tomorrow they won't remember.
  • Step away, take a breather. Fix a cup of tea or take a walk.
  • The patient probably needs a breather, too.
  • Come back refreshed and try again.
  • Don't stretch till you break—get help!

God bless you for loving these precious patients the way they need to be loved.


Susan McElwain is a three-time "care partner" for loved ones with dementia. She is a former board member of Presbyterians Pro-Life and lives with her husband, John in Ohio where she is a member of the Evangelical Presbyterian Church.

Photo used by permission of Carolyn L Farrell Foundation.

 

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