If there is a developing pattern of constipation, frequent urination, diarrhea, blood in the stool or urine, obvious pain, hardness in the stomach, a change in color in the urine, call your doctor immediately. These symptoms are probably medically based and must be treated.

They may also develop from the side effects of a medication or the combined effects of several medications. Always keep an up-to-date list of all the medications being taken and their side effects. Always have this list available on visits to any physician’s office and that includes dentists and homeopathic physicians.

The constant administration of laxatives and suppositories without medical supervision can create problems that might not be reversible. The over use of laxatives can actually shut down bowel function. Laxatives can be an extremely traumatic event for a confused adult to handle and an incredibly taxing event for the caregiver to clean up. Just because your person does not have a bowel movement every day at the same time is not necessarily something to get crazy over with this disease.

Always check with your doctor first.

Note:____________________________________

• Patterns of eliminating food intake sometime change as part of the normal pattern of Alzheimer’s Disease.

• People tend to eliminate less frequently when changes in activity, types of food, and general physical health happen.

• People eat differently when they are less active, swallowing problems alter types of food they can eat which affects elimination, and the brain begins sending faulty messages to the body to regulate basic functions as the late stages begin.

• It is as important for them to maintain a healthy diet as it is for anyone else. Fruits, fresh vegetables, fiber, bran all help maintain the system naturally.

• One of the biggest causes of constipation is dehydration. Make sure your person receives enough water or enhanced sport juices during the day. Irritability and headaches can also be a symptom of dehydration.

Her husband customarily took an hour walk by himself before lunch. They lived in a safe community and he obviously was still able to do this activity unsupervised and of course, the laxative started working while he was in the midst of his walk. She was finding him literally running home in order to get there in time, and on occasion he didn’t quite make it home. She was cleaning him up practically every day and for some reason didn’t make the connection that it was the laxative that was causing the problems. She was so relieved that he was ‘going’ again that she blocked all the other insanity out. Believe it or not, the daily ministrations became such a part of their routine that she ceased to see it as abnormal.

It was months before her daughter found out what was happening. She was at a loss to understand her father’s incontinence, thinking he had an illness that wasn’t being treated properly. She suspected her mother was keeping the truth from her and did not know the mother had never told the doctor about the change in regularity or that she was administering laxatives. She was too embarrassed to talk about the subject at all. Fortunately the doctor was able to intervene before permanent damage was done.

When I think of the stress that was created by her reluctance to even talk to her doctor about the change that happened, I have to wonder how far our needs to avoid this subject will take us.  But then I think about my elder relatives and realize how private their generation is.  They are people who take care of their own business. They don’t ask for help, don’t talk about private matters, and strive to solve them on their own. Clearly neither the mother or the father were going to do much talking about his increasing incontinence to anyone, including the daughter.

You do not need a doctor to prescribe incontinence pads any more than you need a doctor to prescribe menstrual pads for your teenage daughter.

Another caregiver I know, in her desire to circumvent having to make the decision to diaper her father, asked his neurologist to write a prescription for ‘pads’ and to ‘fit’ her father in his office. I’m sure that’s one request no one was ready for, most of all her father and least of all the doctor.

What she was really asking for was permission to diaper her Dad and she wanted it to be someone else’s decision. She didn’t know how to confront her father or her mother, who was still the primary caregiver and she was so uncomfortable entering their space that she resorted to an extreme solution of the problem.

If permission is what she needed all she had to do was tell the doctor it would make her and her mother feel better if he were to tell them it is time to put Dad in diapers. And knowing their family member best, perhaps they reasoned that if the news came from an authority figure, like the doctor, he might acquiesce easier. If all else failed they could always say, it was the doctor’s decision and not theirs when Dad threw a fit.  However, I still maintain that not making a big deal of this is the best way to approach it.  At this stage of Alzheimer's it is amazing what the family member retains, and trying to place blame on the doctor for insisting on incontinence pads may be the one thing your family member remembers.

Honestly speaking there is no tried and true way around this moment of truth.

When she told me of her plan I told her to cancel the doctor’s visit.  I offered instead, to sit down with her mother and talk about the various incontinence products and how to alter the home environment to meet her father’s need. As it turned out, all her mother needed to hear from me was that it was time to start using incontinence pads on her husband and a run down of which items might work at which stage of development in his incontinence.

I went through her home with her and told her how to ‘proof’ it and how to approach the tasks with her husband.  We talked about attitudes, and we talked about love.  We all laughed over the problem of what words to use to describe the daily ‘events’. The irony is that she had been using certain products herself for years, but it was inconceivable that her husband could make the same adjustment.  He was after all, her husband and a very independent man.

I told her, given the level of dementia her husband was experiencing, I saw no need to get his permission.  If that was the case, she might need it every time she tidied him up, and who had the energy?  He would never remember the conversations or the explanation and bringing it to his attention would only serve to give him the ‘bad news’ over and over. I told her to just start using the pads as if they were a normal part of his dressing routine and to use the time to assure him how much she loved him.

One week later I checked in with her.  She was amazed at how easy it had been.  He had asked her what she was doing the first day, because she was unaccustomed to using the particular pads I had recommended and he noticed she was doing a lot more fussing about him than usual. She patted him on the back, gave him a hug, and said... "Nothing dear, I’m just having a harder time than usual, my arthritis is acting up." He became preoccupied with worrying about her and lost interest in what she was doing to him.

All she really needed was to take charge of the situation, some tools to work with and an attitude adjustment. I believe that’s what all of us need in these circumstances. We often need a sounding board and we sometimes need someone to say the obvious.

Caregivers often go to the doctor complaining about hyper-activity, combativeness, sleeplessness, and other behavioral changes that contribute to the difficulties in toileting and bathing a family member with Alzheimer’s Disease. They go with the hope that the doctor can prescribe a medication that will take the behaviors away while allowing the person to continue toileting themselves or cooperate more fully in their care and hygiene needs.

Sadly, while there is medication that can help manage overt psychotic behaviors, the medication often depresses overall functioning in Alzheimer’s patients as a side affect, and more Alzheimer’s family members than not, don’t respond well to psychotropic medication. Finding the exact combination of drugs to slow an Alzheimer’s person down or elevate them in order to make them more manageable can be a long and often fruitless effort.

There is a big difference between being combative and being dangerous.

For one thing, the psychotic patient still has the ability to follow through on their misconceptions. They still have their functional abilities whereas Alzheimer’s people are in the process of losing theirs.  No matter how off their perception may be, a person with Alzheimer’s Disease won’t be able to think out and follow through on their actions with any real degree of ability. 

Basic Truths:

If you go the medication route you must develop a good rapport with your doctor.

1. You must have a physician who is willing to work with you, listen to you and heed what you see as reactions to the medication.

2. You must have a physician who has specific experience working with dementia.

3. If the behaviors aren’t altered for the better on a medication plan, one has to ask if there is value in continuing it and you need a physician who is willing to consider that question.

4. Periodic review of all medication plans is recommended. Because Alzheimer’s is an ongoing process, the continuing deterioration will eventually erase all the behaviors along with the abilities. Sooner or later all of it will pass with or without medication. There is no need to medicate a symptom that no longer exists. This review usually means weaning your person off all the medication in order to get a base line of behavior by which to evaluate whether or not the plan needs to be altered or discontinued. This process can be done in a hospital, nursing home, or your home depending on what works best for the caregiver. And it can take weeks to complete the process.

This person is your entry to the doctor. They are trained professionals who are often instrumental in helping you solve your problems. They are an important ally and a valuable source of information. How they present your problem to the doctor may actually determine how quickly you will get the information you need. Cultivate this relationship. Don’t forget them when you send holiday greetings to your doctor and it is probably a good idea to include the doctor’s receptionist as well. Too often these service providers become invisible to patients. Don’t underestimate their roles in the care of your family member. A little acknowledgment goes a long way.