Epilepsy Awareness Month Day 21: Managing Incontinence

Before we get to today’s topic, I just want to say: OH MY GOODNESS!  We are two-thirds of the way through Epilepsy Awareness Month! My purpose this month has been to post a video each day about the impact epilepsy has had on Robert.  My intent was also to keep the videos to two or three minutes. 

Well, one out of two isn’t bad.  

So many choices - at the pharmacy and online

There is just so much information to share that it is difficult to keep the clips short but I am still trying!  I sincerely appreciate everyone reading and watching and sharing in order to help spread epilepsy awareness and education. 

Managing incontinence has been a struggle for us.  When Robert was younger, he would lose control of his bladder during seizures but that is different than general incontinence. When I first took over Robert’s care, I had no idea he was incontinent.  He started out in a Skilled Nursing Facility since he was on long-term I/V antibiotics and the staff called to ask if Robert was incontinent. 

I answered no, not at all. Why do you ask?

They then told me how he was not able to make it to the bathroom and how he was wetting the bed overnight.  I still didn’t consider him incontinent; I just thought he was having accidents. 

The first step to managing incontinence is to recognize what is happening.  Even after agreeing that Robert is incontinent, I kept him in pull-up style briefs so that he could go to the bathroom on his own and only have the pull-ups in the event of an accident.  I was trying to keep Robert as independent as possible and ended up just never actually catching up to the incontinence. 

Once I realized Robert was really, truly incontinent I would warn all health care workers when Robert was in the hospital or in a SNF.  I explained that he is especially wet overnight and they would nod their heads and tell me they would be able to take care of it.  Then the next morning they would tell me, “Wow! He is definitely incontinent.”

Welcome to my world.

Robert’s incontinence is due to a combination of the signals from his bladder not reaching his brain fast enough and not being able to move quick enough to get to the bathroom in time. This is all part of his increased cognitive impairment and overall decline due to his uncontrolled epilepsy.

This is the impact epilepsy has had on Robert.

Here are few tips to help manage incontinence:

1. Consult with a doctor about the incontinence.  The physician should be aware of it in order to find an underlying cause that needs to be addressed;
2. Figure out what is covered by insurance. Check with a medical supply store or pharmacy to see if incontinent supplies can be covered by Medicare, Medicaid or other insurance plan. Robert gets a monthly allotment of incontinent supplies paid for by Medicare and Medi-Cal. While I am grateful for the assistance, there are never enough supplies. Richard and I spend between $150 to $200 month on extra briefs, bed pads and gloves and could spend more. We realize not everyone can spend extra on supplies. Get as much as possible covered by insurance and then prioritize to figure out what supplies are needed and how much extra money is available to spend on them;
3. When shopping for briefs, size does matter. It is very difficult to put a brief on another person if it is too small. In addition, a too small brief will not be adequately absorbent;
4. Absorbency is critical. All briefs are not equal! The monthly supplies we get include a medium absorbency brief (it is classified as “maximum” absorbency but it is not.)  We order a more absorbent brief online and use those as much as possible but they are expensive so we can’t use them all the time. Instead, we use the less absorbent briefs when we are home during the day and we change Robert several times throughout the day;
5. Invest in cloth bed pads. I didn’t do this until recently and am kicking myself for waiting so long! These are so much more absorbent than the disposable bed pads which is good for both Robert’s skin and the bed;
6. Use a barrier cream. Urine is very harmful on the skin and a barrier cream can keep the skin healthy. 

I would love to know what tips you have for managing incontinence.  Please let me know in the comment section.

Thanks again for helping to spread epilepsy education and awareness!