Caregiving Questions

Unfortunately, there is no rhyme or reason with this disease—some patients can go on for years with seemingly little decline, and others may progress much more rapidly. A traumatic life event—such as the death of a loved one—cannot in and of itself cause Alzheimer's disease or dementia in general, but it can exacerbate the symptoms of a patient who already has the disease. The death of your brother could have easily triggered a bout of depression in your mother, which could have worsened her memory problems, making them more noticeable to yourself and others.

Because of the brain areas that are affected by the disease, Alzheimer's disease often results in patients becoming bedridden prior to death. So unless the patient succumbs to some other condition prior to being incapacitated by Alzheimer's disease, it is likely that he or she will be bedridden by the final stages of the disease.

Please contact your husband's primary care physician and speak to him or her openly about your concerns. The doctor will probably want to see your husband for an exam, so go ahead and schedule an appointment as soon as possible. You can tell your husband that his doctor's office requires him to come in for a check-up before they will renew one or more of his existing prescriptions. Before your appointment, call the doctor's office and remind them of the reason for your visit. The doctor should be able to determine the underlying cause of your husband's forgetfulness. There are many medical and psychological conditions other than Alzheimer's disease that can cause memory problems. For example, certain drug interactions, thyroid problems, stress or depression, vitamin deficiencies, tumors, small strokes or lung problems can all cause mild dementia-like symptoms—any or all of which of these other problems your husband's doctor will need to rule out before he or she can make a definitive diagnosis of Alzheimer's disease.

Patients in the later stages of Alzheimer's disease are easily confused, so moving such a patient to an assisted living facility can be challenging but it is not impossible. Since every patient/caregiver situation is unique, sometimes it makes better sense to wait until the late stages of the disease to place a loved one in assisted care, and sometimes it simply is more practical to do it earlier on in the disease.

There is also your mother's health and well-being to take into consideration. Even if a caregiver comes to your parents' current home each day, there still may be times when your mother will be solely responsible for your father's care. She may be physically unable to assist him if, for example, he needs help being lifted out of bed or lowered to use the toilet.

Your father may be anxious or confused by his new surroundings initially, but with time he can be aided in accepting them as his new "home." It definitely helps that your mother will be there with him, as this should make the transition easier. Try to have him visit the new home and community as many times as possible before the move, and speak enthusiastically about how nice the new place will be. Immediately following the move, try to get him back on his regular schedule as soon as possible. The more things that are "familiar" to him in the new environment, the sooner he will come to accept it as home. You can also ask the director of the facility for help in objectively assessing when might be the best time to move him, and also about any suggestions they may have to make the transition more seamless.

In many cases, constipation is to blame in cases where dementia patient have been found handling their own feces. Your grandmother may also have hemorrhoids, which can make having bowel movements uncomfortable. Thus, she may not be playing with her feces so much as just trying to help it along, such as by manually assisting in a bowel movement. So first make sure your grandmother is getting enough fiber in her diet so she has normal and regular bowel movements. You might try giving her fiber supplements or even the occasional stool softener. Medicated hemorrhoid wipes or ointments can also help, as can flushable wet wipes which are gentler and more thorough than dry toilet paper.

By now I'm sure you've tried talking to your grandmother to remind her that this behavior is not only inappropriate but highly unsanitary, however, I'm also fairly sure that this approach has been unsuccessful. Reasoning with her is unlikely to make her stop. In this case, your grandmother is simply confused and has forgotten that it is unacceptable behavior to play with feces. It may thus be necessary to monitor her when she uses the bathroom—to make sure she practices good toileting habits.

Some Alzheimer's patients simply become confused in the toilet and forget what they are supposed to do. So give her a refresher course on how to wipe (always front to back!), flush, and wash her hands with soap and warm water. Sometimes posting simple instructions on a bathroom wall can help (easy-to-follow diagrams usually work better than words). Make sure they are posted at her eye level in areas appropriate for the activity (e.g., hand-washing diagram near the sink, wiping diagram near the toilet, etc.)

If she is playing with her feces outside of the bathroom area, then you can also try deterring this behavior by dressing her in special clothing that does not allow her easy access to her bottom. For example, a one-piece jumpsuit that closes from behind can help to discourage this new, and hopefully short-lived, behavior.

Most of all, try to stay calm and patient. Yelling or arguing with your grandmother will only serve to agitate and confuse her. So be positive and encourage her to practice good hygiene by wiping, flushing, and always washing her hands. If her hands are dirty from feces, for example, and she scratches herself (or a caregiver), an infection could easily result. To that end, make sure you keep her fingernails neatly trimmed and filed and encourage her to use instant hand sanitizer (preferably with a moisturizer so that it does not dry out her skin).

Alzheimer's disease can kill a person if it attacks the parts of the brain responsible for controlling breathing and the heart. Whether or not the morphine had any role in his death is impossible for me to say. At the very least, the morphine would have relieved him of any pain he may have had. So please do not feel guilty. You were there for your friend when he needed you, when it really mattered. There was likely nothing else that could have been done for him. Even if emergency care had been summoned, there is no guarantee that they could have done anything to revive him.

Most hospices have grief counselors who can help guide you through your pain. Please speak to one of these professionals, or else contact a clergy, therapist, doctor, grief support group, or other counselor whom you feel comfortable discussing this subject with. I know that it must be difficult for you, but just remember that all of your dear friend's suffering is now over and he is finally at peace. We should all be so fortunate as to have a good friend holding our hand when our time in life expires.

It is good that you are managing your mother’s medications because it is clear that this task is now beyond her capacity. As the disease progresses, you will gradually have to take over more of these duties, which is all part of being a responsible caregiver. Your motives obviously are in your mother’s best interest, so do not think of what you are doing as being sneaky, think instead that you are being resourceful. In certain situations, it is futile to try to reason with a patient who has dementia because their sense of logic can be obscured by the disease. So being a resourceful person and thinking of different ways to accomplish a goal is a valuable skill to have as a caregiver.

As for bathing, this can be a tricky situation. It is not uncommon for Alzheimer's patients to refuse to bathe or change their clothes, and some patients can even become violent if a caregiver tries to force them to bathe. Bathing and personal hygiene can be an issue for the Alzheimer's patient because it is so personal in nature. Some patients may be uncomfortable with the prospect of a bath, either because it is physically uncomfortable (cold bathroom, harsh scrubbing, etc.) or because they may feel embarrassed having a caregiver see them nude, vulnerable, or with incontinence problems. In any case, the subject of bathing may cause your mother to become anxious or agitated if she believes that the bath will in some way bring her discomfort or embarrassment. Your mother’s general remarks and refusal to bathe may also be her way of trying to preserve her dignity—she does want to be told what she should or should not do because it is threatening to her self-worth and how she defines herself as a person.

It is therefore important to try to remain calm and understanding of her feelings, and be flexible in how you might accomplish the bathing task. The following tips may also be of assistance:

• Try just washing your mother's hair in the sink rather than in the tub or shower.
• It is not really necessary that your mother takes a bath or shower every day—instead consider sponge baths for the in-between days. This way, she may only need to remove one piece of clothing at a time, or else just lift up her shirt, etc.
• Make sure that the room she is undressing and/or bathing in is warm and comfortable.
• Try giving baths in the morning when she may be in a better mood. If she refuses, try again when you think her mood has improved.
• Use music to your advantage—calming music can reduce agitation (think spa), or else songs she enjoys may be used to making showering more enjoyable (who doesn’t like singing in the shower?)
• If it works, you can also try bribing her—a favorite snack, outing, or activity in exchange for a bath.
• A hand-held showerhead, shower seat, non-slip mats, and large handles for gripping in the bath or shower can all aid in making the bathing experience safer and easier for you mother.

Your mother’s behavior is fairly typical of Alzheimer's disease, wherein these patients may repeatedly ask the same request or question over and over. Your mother's forgetfulness is just as confusing and frustrating to her as it is to you, which is why she may often get mad at your father for correcting her. Sometimes there can be an underlying emotional context to such beliefs—perhaps she longs for something or someone in her past that she associates with "home." Think about the things that were important to her when she was younger, and ask her if she misses any of these things. Her answer may enlighten you. You can also try hanging a signs about the house that have her name on it, as in "Jane’s house," “Jane’s bedroom,” “Jane’s kitchen,” etc. The sign may help to remind her that the house is really hers and not someone else’s.

The best approach, however, is to calmly tell her that she is already in her own house and then try to distract her by changing the subject. Because of the nature of Alzheimer's, this will have to be repeated many times. Just remember to always respond to her behavior with simple statements given in a calm and reassuring manner. In general, it is not a good idea to argue with an Alzheimer's patient, as this may cause her to become even more agitated or distressed. So if she is insistent or becomes angry with the answer you give, try to redirect her attention to a new subject or activity.