Jane walked into my office with a tearful face.
“I can’t take this any more. I have to place him.”
This was not the first time that I have heard a caregiver make this statement.
However, I have been coaching Jane for over two years and even for me, this statement came as a surprise. Peter was originally diagnosed with Alzheimer’s disease, but over time working with both of them it was apparent to me that Peter was more frontal temporal dementia than Alzheimer’s disease. Knowing this, in our weekly coaching sessions I would bring up incontinence.
For many of us, when we think of incontinence, we automatically think about urinary incontinence. Depending on a person’s stage of dementia, urinary incontinence will eventually occur.
Fecal incontinence is a whole different matter!
Fecal incontinence is the inability to control bowel movements. This can be caused by other bowel problems, such as: diarrhea, constipation, gas and bloating, which I wrote about in my first article.
Fecal incontinence usually occurs during the later stages of dementia, however, for a person with frontal temporal dementia, it often times occurs in earlier stages. This is what happened to my mother … and to Peter.
The reality of understanding fecal incontinence and having to deal with this situation are two totally different battles.
As a caregiver you need to be aware that fecal incontinence can strike at any stage of dementia.
Fecal incontinence happens for many reasons: muscle damage, nerve damage, constipation, diarrhea, surgery, rectal prolapse, rectocele and dementia. If your loved one has had any of these prior problems as the stages of dementia progress, they will be more prone to fecal incontinence.
Medication can also be a contributor to fecal incontinence.
It is a well-known fact that many of the medications used for dementia have major side effects on the stomach. Problems such as diarrhea, cramping, and constipation can occur as a result of taking these medications. For many, the side effects are so severe that they are often discontinued – and they probably should be.
Not everyone can tolerate the side effects that these medications can cause. If the medication can help your memory, but you are spending most of your day in the bathroom cleaning up after your loved one … is it worth it? For many of my clients, the answer is NO.
Fecal incontinence is the number one reason for early placement in an assistant living facility.
Changing the clothes or a diaper of someone who has urinary incontinence is one thing, but changing a diaper or the clothes of an adult who has fecal incontinence is a totally different situation.
In my book I explain about PTDD (post traumatic diaper disorder) – yes, I have been traumatized… but so are my clients and thousands of others. Fecal incontinence is the least spoken about “behavior” or “side effect” of dementia. But the reality is that it happens and as caregivers we need to discuss this issue and bring it out into the open. Even if it’s uncomfortable.
When you are caring for a person with dementia, you will need to address this issue. When you are planning to care for a person with dementia as either a loved one, friend, or paid caregiver, fecal incontinence is something that you will have to deal with and something that you will need to be aware of.
So, where do we go from here? You, as a caregiver, are going to be different through not only their different stages, but also your different stages in life. What you thought you could handle – maybe you can, or could at one time, but now or maybe later on you can’t. As your coach, I am here for you to help you through this time.
There are certain times that even the best of caregivers will need to take a step back to reevaluate the current situation. Know that no matter what stage of dementia you are dealing with, you will need to answer and evaluate, and as things progress – reevaluate. When dealing with fecal incontinence, these are just some of the questions that I pose to my clients:
1. What can you really handle?
2. How will you handle this situation?
3. When will you be able to provide what is needed?
4. Is this something that you will realistically be able to do?
5. How will this affect you and the person that you are caring for?
It took a while for Jane to feel comfortable in her decision. No two caregivers will have the same answer, and you need to do what is comfortable and right for you and your loved one.
Interested in learning more about dementia care? Download the first chapter of “Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide” here!
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