Jim has graciously allowed me to use his ongoing issues with constipation as examples in the previous blogs. However, we have an advantage that dementia care partners often don’t have. Jim doesn’t have dementia. He can use abstract thinking to identify early symptoms, compare them with previous experiences and come up with some valid conclusions about what is going on. Then, with the help of his own private nurse (me!), he can make conscious choices about how to deal with these symptoms. Finally, he can follow through even when the treatment is uncomfortable, bothersome or annoying because he is able understand that what he is doing is going to help him in the long run. These are all things that our friend, Ben, can seldom if ever do.
Ben has dementia. With his limited abstract thinking, he can seldom compare or make conscious choices. He lives in the present, with little thought of the future and only his residual feelings reminding him of the past. Since the strongest of these feelings are usually negative, they are seldom helpful. Jim can say, “I feel bloated,” and recognize that as an early constipation symptom. Ben just feels uncomfortable but probably can’t recognize why. Nor is he able to compare this uncomfortable feeling with past feelings and recognize it as “bloating” or as a warning sign of impending constipation.
Jim can say, “I have the same kind of abdominal pain I have had in the past when I was constipated.” Ben, who used to be a great conversationalist, doesn’t talk much anymore, but he can tell his wife, Ellen, that “I hurt,” or “I feel bad” although he can seldom explain how or where. More often, he simply strikes out at the discomfort with angry behaviors directed towards Ellen, whom he identifies as the source for all that happens to him, good or bad.
Naturally, Ellen prefers to deal with the constipation before the behavior starts if possible. To this end, she:
- Uses a calendar hanging inside their bathroom cupboard to check off when Ben moves his bowels. Thus, she can catch a change in his normal routine quickly and act before it becomes serious.
- Is especially alert during those times when constipation is most likely to occur such as during travel, when routines get messed up and in warm weather when the body needs more fluid.
- Moaning and groaning and the cradling of his abdominal area.
- The sudden appearance of dementia symptoms such as hallucinations, agitation, mania, agitation, verbal or physical violence, nonsensical talking, active dreams or delusions. With Ben, she knows that his active dreams usually get worse when he starts feeling constipated, or when he has a UTI, another “hidden” complication, which can cause abdominal pain and acting out behaviors.
- A sudden increase of already present dementia symptoms. Ben had regular hallucinations but they are usually benign. When they start getting scarier, Ellen starts looking for a physical problem.
- Does his abdomen look bloated?
- Is he holding his head or showing in other ways that his head hurts? Usually headaches and nausea don’t occur until the constipation is so serious that there may be an impaction. However, Ellen has learned to pay attention to when Ben complains of a headache, or starts showing non-verbal signs of one. With him the headaches can come early, while he is still no more than a little bloated. Every person is different and each care partner soon learns what their loved one’s danger signals are.
- Does he flinch or pull away when she gently touches various areas of his abdomen. She asks “Does it hurt here?” “Here?” or “Here?” but she depends more on his non-verbal signs of distress to tell her where it hurts most.
- Has he lost his appetite? If Ben is feeling bloated, he may not be hungry at times when he’d normally be eager to eat or he might reject food he usually loves.
- Does he act like he wants to throw up, or is he actually vomiting? Like headaches, nausea usually doesn’t occur until the constipation is so serious that there may be an impaction. Therefore, if he is exhibiting these signs, Ellen needs to be seriously concerned and might consider an ER visit.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.