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Nobody Ever Told Me! 14 Lessons from a Dementia Caregiver

During our dementia journey, I made lots of mistakes. I learned many lessons including these 14. Perhaps they can help you.
Walking and wheelchairing for Alzheimer's

A recent thought of the week stated, “We don’t know how strong we are until being strong is the only choice we have.”

Nobody ever told me when I pledged, “’til death do us part,” I might become a dementia caregiver. Although diagnosed in 2013 with Frontotemporal Dementia, an MRI or PET scan did not substantiate Bob’s diagnosis. I wasn’t prepared for caregiving. I searched online, bought books, attended workshops/classes and joined a wonderful support group.

We don't know how strong we are until being strong is the only choice we have. (Alzheimer's Awareness)

To discover which of the 102 forms of dementia Bob might have, I searched Google. Since Bob drank heavily after he retired, I researched Wernicke-Korsakoff Syndrome. The symptoms didn’t match his. He had a heart attack at age 48 and quadruple bypass at 56. Vascular dementia symptoms didn’t quite fit either. He suffered no hallucinations, so I ruled out Dementia with Lewy bodies (DLB). I found no dementias to fit his symptoms.

One night the neurologist called and told me to Google “PSP,” the acronym for Progressive Supranuclear Palsy. Symptoms matched – lack of cognition and muscle control, falls, memory loss, inability to talk clearly or recall words (aphasia) and choking.

During our dementia journey, I made lots of mistakes. I learned many lessons including these; perhaps they can help you.

  1. Avoid the word “remember.” Why ask him to do something he can’t. Relate an incident or look at a photo album and see if it triggers a memory.
  2. Hug often and say, “I love you.”
  3. Avoid arguments. Dementia leaves a patient with little age appropriate reasoning ability.
  4. Rather than argue, distract. Change the subject to take his mind away from the present situation. Suggest a walk.
  5. Let someone else be the bad guy. After three minor accidents, the DMV required Bob take a driving test. He failed. THEY took his license away.
  6. White lies (Therapeutic Deceptions) are okay. When he asked, “Where is my mother,” years after her death, I said, “She’s gone to the store” or “She lives too far for us to visit.” Why have him grieve all over again?
  7. Monitor your voice. A cheerful voice and countenance, even if you are angry or sad, results in a positive response. Keep a smile on your face, even when your heart is breaking.
  8. Ignore most people’s advice. They mean well, but, if they haven’t walked in your shoes, ignore their advice. Just say, “Thank you.”
  9. Get help. Keep a list of ways friends who ask can help. Use agencies like Volunteers of America. Hire in-home care. Utilize facilities like Adult Day Programs.
  10. If he tries to talk and you don’t understand, pick one word you do understand and make up a sentence using that word. It’s a meaningless conversation called Ping Ponging.
  11. Take over the finances before a disaster occurs.
  12. Use brain challenging books like “Joggin’ Your Noggin’.” Work large-piece jigsaw puzzles (350 pieces or less), read children’s books with his interests, play matching the pictures card games and look at photo albums.
  13. Join a support group. It is essential.
  14. Take care of yourself. You can’t care for someone if you become sick.

Professional Care

When is it time to find professional help like a memory care facility? In our case, it was prodding by our sons. Bob fell often and I couldn’t lift him. I gave up all my activities to care for him. My sons felt I’d aged ten years in one. When I told Bob I needed more sleep or I’d get sick and wouldn’t be able to care for him, he suggested he go to assisted living. My sons and I decided his rapid decline might require a traumatic transfer to memory care later, so, we admitted him to memory care instead. He wasn’t happy at first, but adjusted.

Support group members offered these breaking points – if your loved one becomes violent, abusive or aggressive, it is time for a facility. When you become ill, stressed or exhausted and feel you can’t do it anymore. When your loved one becomes extremely dependent, incontinent or physically disabled. Research the many facility choices in your area and put his name on a waiting list.

Journaling

Experts suggest caregivers journal. I wrote all the things Bob liked to do, then those he couldn’t do any more and how to adjust our activities to fit his decline.

Consider enrolling in the “Powerful Tools for Caregivers” 6-week course. Take Alzheimer’s classes found at Alzheimers.org. Check your local Office on Aging for more help and suggestions.

You Are Stronger Than You Think

Once Bob lived in a care facility, my responsibilities didn’t end. I received many calls saying he’d fallen, like at 7 am one morning. “Bob fell. Don’t hurry over; he’s okay.”

At my normal noon visit, I showed Bob his alert button and reminded him to use it. He responded in the clearest voice I’d heard in months, “You forgot, I have dementia.” It’s funny now, but, believe me, I hadn’t forgotten.

Remember, you are stronger than you think; you aren’t alone; and you can do it.

Guest post written by Linda Osmundson 
BIO: Linda Osmundson is a teacher, speaker and award-winning author of Papa’s Changes,
Dementia Through a Child’s Eyes, other picture books for ages 7-107 and a children’s middle-
grade novel. Osmundson serves as an Alzheimer’s Educator and facilitator for two dementia
support groups. She has published hundreds of articles in magazines, newspapers, blogs and
anthologies. Visit her at www.LindaOsmundson.com.

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Anonymous
Anonymous
April 8, 2024 12:59 am

Please explain the “alert button.”

Anonymous
Anonymous
April 9, 2024 2:37 am

Brilliant observations. I have walked the journey with my mother and now my sister and your recommendations are spot on.

Edited by:
B. Berger

B. Berger

This site was inspired by my Mom’s autoimmune dementia.

It is a place where we separate out the wheat from the chaffe, the important articles & videos from each week’s river of news. With a new post on Alzheimer’s or dementia appearing on the internet every 7 minutes, the site’s focus on the best information has been a help to many over the past 15 years. Thanks to our many subscribers for your supportive feedback.

The site is dedicated to all those preserving the dignity of the community of people living with dementia.

Peter Berger, Editor

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This site was inspired by my Mom’s autoimmune dementia.

It is a place where we separate out the wheat from the chaffe, the important articles & videos from each week’s river of news. With a new post on Alzheimer’s or dementia appearing on the internet every 7 minutes, the site’s focus on the best information has been a help to many over the past 15 years. Thanks to our many subscribers for your supportive feedback.

The site is dedicated to all those preserving the dignity of the community of people living with dementia.

Peter Berger, Editor

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