How should I handle my mom with dementia when she refuses my help?

A fellow caregiver asked...

My 86 years old mother was diagnosed with dementia over a year ago...she has always been a very neat and clean person but in two occasions she has soiled her pants. In one occasion I saw her with her pants all dirty and when told her to change her pants I noticed she didn't have any underwear on. When ask her why didn't tell about it, she just looked the other way and refused to talk about it. Don't know how to handle this situation, need help. Thank you.

Expert Answer

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

I'm so sorry to hear that your mother has been diagnosed with dementia. You have many challenges ahead of you, and as you've already discovered, incontinence is one of those challenges.

Because of your mother's dementia, she may not be fully aware of her urge to go to the bathroom. As a result, she soils herself. She may be, at least on some level, aware that she is having these "accidents" which is why she looks the other way and refuses to discuss it. She's embarrassed. It's not a conscious decision on her part to not go to the toilet or not to put on her underwear. Those actions are absolutely attributable to her dementia.

It's difficult but very helpful if you can accept that your mom's behavior is a symptom of her disease. All the logical and rational talking in the world will not fix the problem, and it may continue to occur. Mom simply cannot help herself, and accidents will happen.

What you can do is say to mom when this happens something along the lines of, "Mom, I know you are embarrassed and upset by these accidents, so we're going to work on helping you." Your next move is to remove all of her underwear and replace it with a product such as Depends pullups.

You didn't mention whether mom lives with you or not, but if she does, you can be with her when she gets up in the morning and prompt her to put on her "new underwear." You can also set up some sort of reminder schedule that prompts her to go to the bathroom periodically "“ every 2-hours. This can be done in person if she lives with you, or with the occasional telephone call if she lives alone.

Most people are on some type of regular "rhythm" as to when they have their bowel movements "“ in the mornings or midday etc. You might prompt mom with reminders several times during that time of the day "“ "Mom, do you have to go to the bathroom?" That may help. However, incontinence is a big part of dementia and staying ahead of the game is as tough on you as it is on your mother. Unfortunately, mom is not at a cognitive level where she can contribute to the solution of her problem.

If your mom lives in a facility, meet with the Director of Nursing and the wellness staff and ask them to notify the entire staff and to prompt your mom when they see her during the day, "Mrs. Jones, are you okay, or do you need to use the bathroom?"

That level of cueing, whether provided by you or others, plus the use of a product like Depends is the best you can do to help your mom under these circumstances.

There are drugs that treat urinary and fecal incontinence, however, I'm not a big fan of those drugs for use with patients diagnosed with memory loss. Most of those drugs have warnings stating that their use may exacerbate memory loss, and that, in my opinion, is not a good trade-off.

Do your best to approach this problem as if your were a parent dealing with a young child, because dementia often creates a role reversal for aging parents and their adult children. You may find that you've become the adult and your mom, because of her dementia has become much more child-like.

I've had to deal with this challenge with my own mother, and I know how difficult it is for both of you. It's not easy nor is it fun, but it may be part of your new role in caring for your mother. I wish for you patience and the ability to provide your mother with understanding and love as she and you deal with this and the many other aspects of this disease.