a young woman sits on a park bench

It took me a long time to accept that no pill, no miracle doctor, no loving care, and no medical book on Alzheimer’s disease was going to suddenly fix my father and make him like he used to be.

Mother was absolutely sure that if “we” took care of him at home, he was going to be okay.

My dad’s know-it-all baby brother didn’t believe the diagnosis for several years and accused me of making it up because I wanted to throw him away.

Others thought that magical pill called Aricept was going to cure him and threw a fit when Mother and I could no longer go on two to three hours of broken sleep a night, his bowel incontinence was out of control, he had become extremely violent, and we finally placed him in a facility.

These people kept telling Mother we could bring him home in the “spring” because he should be well by spring.

No matter how much I spoke up about the reality of his disease, people pooh-poohed me and insisted he should be brought back home to live, that he’d feel better at home, which just piled more guilt and anguish on my poor mother and me. The sheer stubbornness and stupidity of people literally blew my mind during this time.

We got all kinds of “good advice,” but nobody volunteered to give us a break if we did try to bring him home.

Sorry, but helpful advice doesn’t assist an exhausted, burned-out pair of caregivers.

By Vicki Bennett, originally published on Facebook.

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

Related Articles

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

9 Comments

  1. Totally understand. My mother took care of my father with Alzheimer’s at home for as long as she could, until he hauled off and hit her in the chin. My dad in his right mind would never have struck my mother.

    People need to stop judging others when they make the best decisions for their families. While it may be great that some people can take care of their loved one with dementia at home until they die, it is simply not safe or feasible for other families to do that.

    Reply
  2. Excellent article. This sums up perfectly why every caregiver must find their own path. There is no “one size fits all solution” when it comes to caregiving.

    Reply
  3. Your story is so eerily like the one playing out in my own life. On monday after a nuclear level meltdown by my gram I made the decision to begin the process of having her put in to a nursing home. I have stood firm in my decision and calmly explained my reasoning. No matter what anyone else thinks, I have to think of my grams safety first, and very soon she won’t be safe at home. I’m sure her being admitted won’t happen overnight so starting now I think is the smartest option. Dementia is awful.

    Reply
  4. Thank you I needed this. My mother does not have Alzheimer’s. She has dementia. And she’s also been diagnosed as bipolar. I am the only child. I have had plenty of help pool advice given to me but no help given to me.I am being told that I need to take a break. How do you take a break when nobody is there to step in? The story is like a great big hug and I thank you.

    Reply
  5. If ” they” aren’t willing to share the burden then the guilt should be on them, not you! I’m so sorry you are going thru this. I understand all to well how overwhelming it can be and how helpful advise is not helpful!

    Reply
  6. You are so right. If family and loved ones really want to help, they would educate themselves on this horrible disease. Their capability of being able to talk intelligently about what is happening would be the most helpful of all. But they still won’t provide any respite care for the caregiver. I know this first hand. I feel your pain.

    Reply
  7. You will find nothing but support from me , I care for my husband at home by myself and am reaching the end of my rope as well , not so much guilt , but not any offers for breaks either , as long as you keep doing what you always do and expecting different results , well you probably know that phrase . Life is too short to feel guilty , sounds like you have gone way above and beyond in trying to do your best as a caregiver , thanks for sharing your story …

    Reply
  8. Thanks for this. I’ve been accused of many of the same things. When city traffic became upsetting and confusing I was accused to taking him away from his family to live in the country (when in actuality it was his decision); I was accused of taking his independence away when they insisted he drive over to watch a hockey game and I called to make sure he made it okay. When he got lost and called me to come get him, they somehow still said it was my fault he didn’t make it; they accuse me of over medicating him even tho the neurologist has him on the only medications he takes. I was accused of not letting him keep contact with his family when I would say he was napping when they happened to call. It would make him angry that they would say that, so he wouldn’t call them back…which added fuel to their fire. When his condition and behaviour became upsetting for our son, he and his wife told us to leave our in-law-suite-home. I used to feel guilty but I can’t take the blame any more. They don’t offer to stay with him so I can have a break; they don’t offer to take him places so I can have time to clean the house or take a bath; they don’t offer to do anything but complain. I’m done with that. I do everything for him as frustratingly exhausting as it can be at times – I have done nothing wrong. I’ve done my best for the man I love. He and I work together and try to ignore the negativity. I need to read articles like this to help me cope. Thanks again.

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.

%d bloggers like this: