Dear Carol: My mom has lived with us for several years and it’s been going pretty well up to now. Her dementia is worsening, which we expected. What we didn’t expect was to have so much trouble managing incontinence. This seems like a small thing when we consider the many challenges of dementia care, but with help from a geriatrician, I’ve learned how to respond to most situations in the recommended manner (most of the time). Except for the incontinence problem. Mom’s ruining the furniture with her need to be “independent” and none of the tricks that I've learned are helping. If the mess were confined to the bathroom, it wouldn’t be so bad, but she will sit on a chair to pee, apparently thinking she’s on the toilet. She wears pullups, but she doesn’t change them when they are wet and leaky. Worse, she angrily fights my offers to help. I admit that I've sometimes responded in anger and that’s wrong, but I’m human. Any tips on getting her to cooperate? – TG
Dear TG: I’m glad that you recognized your own humanity so that you, hopefully, aren't too hard on yourself. Incontinence is far from a small issue under these circumstances.
You already know that arguing will not work with someone like your mom, nor will presenting logic. This is because her damaged brain has left her unable to process information correctly, therefore her reality is most likely going to be different than your reality. For this reason, telling her that her incontinence pad is leaking and she needs to change will likely be met with confusion or worse – anger and resentment.
One thing to consider is that your mom may forget where the bathroom is and she most likely can’t find the words to express this. Putting a sign on the bathroom door, and another on the wall next to the door, might help. While the word “toilet” could be used, an image may be better. You can draw an image of a toilet, download something from the Internet, or order one made specifically for this purpose from Alzheimer's suppliers.
Additionally, you could try saying something like, “I’ve got this great new underwear that I’m trying, and changing it often keeps me way more comfortable. You probably wouldn’t like it but if you decide you want some like it let me know and I’ll order some for you!” If possible, model the pullups as you do this and repeat that they make life much easier because they are so easy to change when they're wet. This approach may or may not work but it’s worth a try because it normalizes wearing the pullups and that could make her feel less defensive.
Remember, too, that people living with dementia go through phases. Eventually, your mom might become more compliant when it comes to accepting help with this, particularly if you’ve made the effort to be less forceful in your approach. Eventually, she will probably also transition to diaper style underwear and at this time she’ll need increasing levels of help, so convincing her to change her incontinence wear won’t be such an issue.
Protective underpads on your furniture are extremely helpful in these situations, and you can look to Egosan to get them delivered to your door just like the pullups and briefs.
The quality of protection that you choose will make a difference, too, because the less often you have leaking problems the less frustrated you will be. Egosan products are a favorite with assisted living facilities because they not only protect the skin, they cut down on the work of tending to people with both dementia and incontinence. Tip: All the products are much less expensive if you order by the case.
I’ve mentioned this before, but I’ll say it again: One of the most frequently cited reasons for placing people living with dementia in a care facility is incontinence. Often, our older loved ones are more reasonable with people who come across as medical professionals than they are with family members due to defensiveness or modesty issues.
There's no guilt allowed if you need to move your mom to a memory care facility. You’d still be her advocate. Remember that your mental health – and your home environment – are important, too.
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