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.