Strategies for getting mom to accept daily care

John from Arlington

Mom's got an unspecified dementia and also significant physical disabilities that make it impossible for her to leave her bed or wheelchair without assistance. After a frustrating experience with a nursing home, we have recently moved mom back to her home of more than 50 years, where she lives on the first floor and is cared for by a live-in CNA. I live nearby and  visits two or three times per week to bring her necessities and to talk with her. She can still hold conversations and talk about current events and her memories, although she sometimes can't grasp concepts, and, on her bad days, loses track of where or when she is and who it is she is talking with.

Both at the nursing home and now with the private caregiver, mom has a behavior that makes it very hard to care for her. Frequently, when she is touched in order to change her diaper, reposition her, or provide other needed care, she will shout that "it hurts! it hurts!" (or just "ow! ow!" or similar) and seek to push away or even to strike (ineffectually) the person trying to assist her.

We don't believe that she is in actual pain. The complaints only arise when she is handled, not when she is unmolested. Doctors and nurses have looked for things that might be hurting her when she is handled and found nothing. And the complaints often start with the first gentle touch, not later, when mom's body is actually being moved or manipulated.

My best, non-expert, guess is that this is simply the best protest that she can muster, given her current condition, against the indignity of what is happening to her. And, honestly, I think that the fact that her caregivers are not white is a factor. Mom has been a liberal supporter of civil rights for her entire adult life, but she was born in 1932 and raised in the U.S. South as the privileged daughter of a family that traces its lineage back to the early days of the state, surrounded by African American servants and deeply ingrained caste system.

So, I'm asking for ideas: What can we do to get mom to accept the daily care she needs? (Please don't suggest drugging her into a stupor to make it easier to change her diaper or hiring only white caregivers.)

mommyandme (m&m)

I might consider calling for a hospice evaluation for your mom.  The nurse can assess many issues.  Can’t hurt and they may be an added level of support.  A dementia patient doesn’t have to be imminently dying to receive hospice care.  My mom’s been with hospice since February 2021.  

My mother often says “ouch” to a touch.  I don’t believe she’s in pain most of the time, although sometimes it’s due to my cold hands.  Asking her if I can do what I need to do or explain what’s going to happen often helps, guess she feels less violated that way.  

I just feel sorry for all of us.  

jfkoc

I think you have several things to look at. 

1. A nursing home staff is not trained to care for people with dementia. That is what memory care does or better supposed to do.

2. What is the approach used before even touching your mother? Have they tried using a treat?

3. How does your mother react when you care for her?

I agree...call in Hospice....the sooner the better.

jordansfca

Can you (or the aide) tell her what you are going to do before you do it?

Mom, I am going to (change/lift/move/replace)... for you. Here we go...

She may be reacting because she's surprised at the action.

John from Arlington

These are very helpful suggestions, thank you. Yes, I've noticed that caring for mom is easier when we explain what's about to happen and why at each step of the process, and I'll ask her caregiver to try that approach.

And contacting the local hospice program is great idea that seems blindingly obvious even though it didn't even occur to me until you mentioned it. I've just reviewed the hospice's website and had a preliminary call with them and learned that even if mom weren't deemed appropriate for hospice at this time they also offer a "primary care at home" service that seems as if it would be terrifically useful.

Thanks again. And please continue to share any further ideas that might be of help.

Neverends

Hello and welcome, I care for my 87 year old mom who does the same thing.  When I'm changing  her or doing anything  else for her I go thru the steps with her almost all the time. I try to keep it short and quick. While getting a shower or a sponge bath I explain the entire process, " I'm  washing your hair now  close your eyes, I'm washing your back doesn't that feel good?   I'm washing  your legs  doesn't t the soap smell  nice? Now I need your help  stand up so we can wash your private  parts. We are done." She says ouch thru the process but gets distracted by my questions and statements  to her. Explain,explain explain what your doing BEFORE  it's done. Hope that helps!

live in daughter

Hi John, I did notice with my Mom when we slowed down and engaged in conversation asking how she was doing, talking about the weather, small talk, she seemed to relax with daily cares. It seems as caregivers we sometimes are in a rush to accomplish all the tasks that we don't approach our LO with a slowness and genuine interest to the person.

It would take sometimes 45-60 minutes to get dressed in the morning but it was on our Mom's timeframe that mattered most.

Hope this helps.