9 Things They Never Tell You About Living With Dementia

It’s one thing to read about dementia.

It’s another to actually experience living with dementia. To actually have to care for a loved one with dementia. And to have to deal with the all the little things, on a daily basis, that never get talked about.

One frustrated woman, drummergirl, posted about this frustration on a Alzheimer’s message board. In her post, she mentioned a list of things that never get talked about in articles on how to care for those with dementia.

It’s a raw, emotional, powerful post. Here, paraphrased, are 9 of the things she shared.

They don’t tell you…

  1. How to persuade your loved one to take their medication when they’re screaming that they’re going to call the police on you because you’re trying to poison them.
  2. What to do when you pass a small child on the street who she thinks is her grandchild and wants to talk with him.
  3. What type of adult diapers to get when she becomes incontinent. Or how to get her to wear one. Or how to get her to keep it on and not stash it in a pillowcase.
  4. How to get your (previously kind and gentle) mother to stop screaming/cursing at/hitting you when you try to get her into the shower to try to get rid of the always present smell of urine.
  5. How to deal with the “crushing realization” she will never be able to call you again, let alone be at your wedding or enjoy being a grandmother to your kids.
  6. How to channel your anger at others whose lives revolve around their families, friends, careers, etc. while yours revolves around “a terminally ill, confused old lady who doesn’t even know who you are.”
  7. What to do about a landlord who don’t want her living in their property because they think she’s a “threat to the community”.
  8. What to say when she cries because she thinks she’s a kid and can’t find her mother (who passed away long ago). Then packs up all her things and begs you to take her home.
  9. About the hours dealing with paperwork, bureaucracy, meetings, etc. to get government assistance.


The Raw Devastating Reality of Living with Dementia

This is the raw, devastating reality of taking care of a loved one with dementia.

A reality that has no easy answers or quick fixes.

If you’re going through a similar experience as drummergirl, just know that you are not alone.

There are online support groups that are there for you.

There are local support groups/organizations that are there for you.

There are local memory care facilities that are available to help lift some of the weight off of your shoulders.

For your sake, and your loved one’s sake, don’t go through this alone. You may not find all the answers you’re after but having the support of others who understand can make all the difference in the world.


  1. I’ve been doing this for 5 years ,almost losing everything ,being told she was dying five times,and the Very worse part ,my own family whom spent No time with her ,in agreement,with others whom came in once a week,for 45 minutes.Personality changes YES,HIDING THINGS YES,NO TIME OUTSIDE THE HOUSE YES,HAVING TO LOCK US IN SO SHE WOULD NOT GO WONDERING,FINANCIALLY STRIPED.THEN having your whole family disagree with you ,on her condition.Bed wetting ,changing her .And here is the big one.MY LOVE AND RESPECT AS A DAUGHTER AND CARE TAKER FOR THIS IS MY MOTHER ,AND I MUST BE STRONG,JUST AS SHE WAS FOR MY SISTERS AND I,WE MUST BE FOR THEM.O AND I FORGOT TRYING TO JUMP OUT OF THE CAR ,WHILE GOING FOR DOCTORS APPOINTMENTS,HIT OVER THE HEAD WITH A PHONE.It goes on,and on.Just prepare your self for example And over active child with AD.D. ON No medsALL AND ALL WE CARETAKERS LOVE ARE FAMILY’S ,LOOK WHAT THEY PUT UP WITH RAISING US.

  2. I am in the early stages of Altzheimers. I fear for my caretaker. That he will leave me when l get worse. I have no family to take care of me.

  3. Phyllis there are many programs out there to help the elderly. Don’t be afraid for or worry about the future. Just deal with things as they happen in the moment.
    And if you are really concerned about your caretaker leaving when you get older, why don’t you have a heart to heart sit down and work it out? At the very least, you should let him or her know your concerns about the inevitable future and then you could work together to have a back-up plan.
    After everything is said and done, ultimately you need to walk in peace, be at peace and keep your mind going with games like crosswords or sudoku, something that requires some thought to complete and not just meaningless repetition. If things really become bleak, just take comfort in knowing that you can always just (in a Brooklyn accent) “Forget about it!”
    “What’s a mattah you? Forget about it!” Pun intended.
    You may also want to try to speak with your subconcious mind before you go to sleep and when you wake up with affirmations. Such as, “My mind and memory are healing through the infinite intelligence of my subconscious mind.” Repeat it over and over and have faith in your subconcious mind! It never sleeps!

  4. What an awesome reply!
    I take care of my 90yr old dad. He is ( as I see it) in his later stage. Over the weekend was the first time he yell at me in a flash I became a child! Flash back Im an adult, but had to pause and not respond with angry. I walked out and came back calm.

    • Good on you for taking a moment to collect yourself and come back calm. Thank you for sharing your experience!

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