There isn’t a day that goes by that I don’t receive an email or phone call from a caregiver concerning diapers. Ultimately, diapers mean incontinence and this is a situation that no caregiver wants to deal with. Myself included.
These inquiring minds, which are more often than not caregivers in crisis, have reached a point where they know that their loved one is in a situation that needs to be addressed.
For many caregivers, by the time they reach out to me, they are at their wit’s end. And as an experienced caregiver, I don’t blame them. I’ve walked in those shoes.
As I shared in part one of this series, the frustration of ruined furniture and car interiors is something that comes with the territory.
I’d like to share with you a story from when I cared for my mom. This story is forever etched in my mind. And what has been seen cannot be unseen.
The last time I took her to a restaurant, was the last time I took her out without her wearing a diaper. Mom loved Red Lobster and so did my kids, so off we went. As soon as we got to the restaurant, I took Mom to the bathroom. Needless to say she was in a stall by herself, so I just assumed that she had taken care of business. I should also mention that before we left the house, I took her to the bathroom then as well.
As we were sitting at the table, Mom announced she, “spilled her water.” Had she been drinking water at all, that would explain the puddle around her chair. But she hadn’t touched her water glass once. It was clear what had happened.
Over the years I have heard from thousands of client’s experiences similar to mine. During the mild to moderate stages of dementia, loved ones who have incontinence will often say illogical things. “The roof leaked and the bed is wet,” “I spilled my water again,” “the waitress was clumsy,” “water splashed from the sink,” “someone came in and poured water on me,” and the list goes on.
To start, some of the stories are believable. Until they occur more and more frequently and there is no denying that you are dealing with an incontinence issue.
Cue the crisis emails and my phone ringing off the hook.
It’s important as a caregiver that you know there is a difference between incontinence itself, and pre-mature incontinence. In “Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide,” I go into specific detail on how to tell the two apart and how to successfully deal with each one. But no matter what stage of dementia your loved one is in, there will come a day when they will be incontinent.
Dementia affects their ability to recognize when they have to go to the bathroom, the physical ability to actually make it to the bathroom, and the steps they need to take to go to the bathroom if they make it there.
Since no one goes through the stages of dementia the same way or at the same time, it’s difficult to pin point exactly when this will happen. It could happen at any point. I have clients whose loved ones are in the late stages of dementia who tell me that their loved ones are still able to go to the bathroom by themselves. However, after seeing their loved one in person – or through YouTube, Skype or Face Time – I can tell that there is no way that they are capable of going to the bathroom on their own.
I am talking about individuals who can barely get up from a chair, walk, or properly remove their clothing without assistance. The caregiver is eventually trained on what to look for. Constantly looking for the individual’s signs and clues that they need to use the bathroom can be exhausting. Yet still, caregivers do what I call “the toilet watch waltz.”
By remaining on high alert and getting their loved one to the bathroom on time, in their minds, their loved one is “technically” not declining. As long as they are “still going to the bathroom,” albeit, with the caregiver’s help, technically speaking they are still continent.
But deep down, we all know they are not.
Once you accept the fact that the person you love is changing, and that their capabilities change as they go through the different stages of dementia, it’s an eye opening experience.
No one, not you or the person that you are caring for would ever want to be in this situation. But this is where you both are. Helping your loved one each and every time they need to go, does not make them continent.
This just allows both of you to not only avoid accidents, but also avoid and deny the painful reality of what is happening. I see it everyday – denial and stages of dementia go hand in hand.
If the person that you are caring for accepts that diapers are now a necessity, that is often the first step to accepting both of your lives will be different. And in this case, once diapers are used, different is better.
If dealing with diapers, stages of dementia and incontinence, and denial were easy, this wouldn’t be such a common topic of conversation for caregivers. It will never be easy for either party involved. This is by far the most personal, and most intimate situation that you will ever have to deal with as a caregiver, and it is heart wrenching.
Whether you are a spouse caring for your significant other, or a child caring for a parent, this situation is often approached differently depending on the relationship. But regardless of your relationship, there is one unifying front that we can all agree upon. Diapers are meant for children, and trying to convince a grown adult that wearing them is a good idea is going to be an extremely difficult task.
Over the next few weeks, I will go further into detail about diapers and incontinence throughout the stages of dementia. Different stages will require different types of diapers.
If you think this piece will be helpful for another caregiver, please share. It could help someone more than you think.
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Photo courtesy of David Shankbone