By Frank S. P. Yacino
This is #16 in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara who has been struggling with this disease for over fifteen years.
During the early stages of dementia and Alzheimer’s the patient still has some control of their bowels and urine, know when they have to go, and how to take care of themselves. They will still be able to wear normal undergarments and have the ability to dress by themselves. Somewhere between Stages 6 and 7 the patient may develop incontinence. At this time, it will be necessary for the caregiver to start using undergarments (pampers or briefs) and liners for the patient. This could also be the turning point for some caregivers where they may begin to think about putting the patient into a long-term care facility if they feel unable to cope with the incontinence of the patient. If the intention is to keep the patient at home for as long as possible, as we have done with Barbara, then I can assure you, the caregiver, that this will be a long, difficult time of providing care to the patient. Barbara’s incontinence began in December of 2006 and we have dealt with it every single day since then.
The part that I personally found the most difficult in toileting Barbara was when she would have a diarrhea issue, whether it was from the flu, medication, or some food that disagreed with her. The flu we cannot control. The medication and food we did. It appears that after a few years of using the Aricept (diarrhea is a side effect) it bothered her stomach so much we took her off of that medication and we’ve continued with the Namenda with no additional side effects. We stopped Barbara from using regular milk and started her on lactose-free milk. The food that bothered her stomach was garlic, which was used in the preparation of her food at Day Care when she attended. Once we stopped the garlic there have been no further issues with the diarrhea. It took some time to figure all this out but we persisted to the point where we are today----no daily diarrhea.
Once the incontinence begins it won’t stop and will mean that the caregiver will have to begin toileting the patient on average about every two hours to make sure the patient is dry from urine. This becomes even more important if the patient has had a bowel movement. Both urine and feces have bacteria in them and when a patient continuously passes both and is not properly and regularly changed the possibility is high that the patient will develop a urinary tract infection (UTI). As noted in Article 12 these are very painful to both men and women.
Patients who can still speak will be able to tell you, the caregiver, that they are in pain and testing of the urine will confirm whether or not they have a UTI. Whatever bacteria is found in the specimen will also determine the antibiotic necessary to combat the bacteria. Medication for the UTI can be from three days to ten days, depending on the strain of the bacteria.
When Barbara first started with the incontinence I was not aware of the fact that at night there could be leakage of urine or feces from her undergarment due to twisting and turning in bed. In the first weeks it was constant washing of the bed sheets and her pajamas. Finally I found a way to prevent that problem by using a pad under Barbara at night that was about three feet square and had a cloth top and a vinyl bottom to prevent the urine or feces from staining the sheets. (These pads are available at most drug stores.) The pad could not help her pajamas, but it was easier to change and wash the pajamas and pad than the sheets each time she had a problem. We would also use the pad when Barbara was on the couch or in the recliner chair and even on the front seat of the car when we were able to go for car rides, up to November 2011.
As a caregiver, continue the good work that you’ve started. Your loved one may not be able to express themselves to tell you that, but know that they are aware of what you are doing for them. There is help out there if you need it. If you don’t know where to go my first recommendation is to join a Support Group in the area that you reside. Here in Webster we have an excellent group that meets the second Monday of each month at 6:15 PM at the Accord Adult Day Center, at 10 Cudworth Road. Come join us---you’ll be glad you did.