Caregiving Questions

Patients in the final 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. Since each case is unique, it is difficult to say which stage is best to transfer a patient to an assisted living center. The health and well-being of the patient and the caregiver should be the primary and secondary factors, respectively, that govern this decision.

Typically, the final stage of Alzheimer's disease may last from 1 to 3 years. On average, patients with Alzheimer's disease live for 6 to 10 years following diagnosis, although some patients live as long as 20 years. How long your father will continue in this advanced stage of the disease is dependent upon his general health prior to being diagnosed, how quickly the disease has thus far progressed, and other complicating conditions, disorders or diseases he may have. This must be an extremely trying time for you, but you can take some comfort in the knowledge that his suffering will most likely soon be over.

Did your mother have any advanced directives that could guide you and your brother as to what to do in this situation? If not, are you or your brother aware of her end-of-life wishes? If she never stated them directly, you may still have a feeling or sense of what they might be. Her physician seems to have already weighed in with his opinion, but it seems that you are unsettled by this decision. There really is no right or wrong answer here - the only real factor is to decide what is best for your mother. You and your brother should determine what will provide the most comfort and/or ease her suffering most in the final stage of this disease. If you need help with these decisions, try contacting a hospice care professional who has experience helping families with loved ones in the final stages of life. The hospice professional can act as a mediator if, for example, you and your brother have differing opinions, and can help your family work through their feelings to come to a resolution about your mother.

In the meantime, to ease any discomfort your mother may have, try propping her up in bed so she is in a more upright position, even when she sleeps, so as to encourage the phlegm to drain down the back of her throat.

Many Alzheimer's patients have difficultly sleeping through the night and often may wander at night as a result. Any number of reasons may account for why this occurs in patients with dementia, though not all of them are currently known or understood. It may be that your mother is confused about day and night, as dementia often wrecks havoc with a patient's circadian rhythms (the natural sleep/wakefulness patterns we all experience). Try also not to overtire your mother during the day, which may lead to restlessness at night. While afternoon naps can interfere with a patient's ability to sleep through the night, perhaps in your mother’s case she could benefit from some quiet time. Try encouraging your mother to just sit quietly, perhaps listening to music or an audiobook, reading, painting, or some other quiet period, instead of actually napping.

Some other suggestions include:

• Try an early dinner or late afternoon snack.
• Use good lighting inside the house during the day and dim, calming lighting in the late afternoon and evening.
• Encourage some physical activity during the day – exercise can help a person to sleep better at night.
• Schedule more difficult activities, such as baths or doctor visits, earlier in the day.
• Avoid giving any caffeine or alcohol in the late afternoon or evening and reduce fluid before bed. In fact, it is best to avoid giving caffeinated or alcoholic beverages altogether.
• As much as possible, try to establish a bedtime routine.

While it is not appropriate to misinform or withhold information from an Alzheimer's patient regarding important matters such as their diagnosis or medical care, when it comes to non-medical issues it sometimes is easier to go along with illusions of their “reality” rather than to try to constantly correct them. As you have mentioned, sometimes this just leads to a patient becoming upset and depressed. You know your mother best, and if you believe that omitting the truth about her parents or where she is may help, then it should be okay and may actually help to reduce some of her anxiety. That being said, however, you still have a moral obligation to inform her of important matters, such as her health, even if the truth is not so kind or even if you do not think she will be able to comprehend it.

Beyond all this, your mother's confusion about her parents and her current location may stem from some anxiety or fear she may have. The fact that your mother thinks that her parents are still alive and that you and your brother are actually her siblings is not so unusual in and of itself. Because of the nature of the disease, patients often remember their early experiences much better than ones from later in life. Your mother may be missing someone from her past, or else fear she will be left alone because everyone she knows is gone and she may feel she has become a burden to you. Calmly reassure your mother that she is loved, that she has done nothing wrong and she is not a burden, and that there will always be someone to take good care of her and keep her safe. You will probably have to repeat this many times, but try to be understanding and patient.

People who have been recently diagnosed with Alzheimer's disease and those in the early stages of the disease often go through a range of emotions as part of coping with the diagnosis. Denial is one of these coping strategies. Your neighbor may be feeling a sense of loss for her independence and autonomy. Even though her husband is only trying to help her by trying to make sure she is safe, his reminders may be construed as attempts to limit her independence. It is difficult to accept that you may not be able to drive anymore, for example, especially if you’ve always defined yourself as not having to depend on others to get around town to run errands, etc. Therefore, your neighbor’s denial over her disease diagnosis may be her way of trying to preserve her dignity—she does want to be told that she can no longer do certain things because it is threatening to her self-worth and how she defines herself as a person.

It sounds as though both your neighbor and her husband could benefit from some counseling and/or support groups. Talking to others who have been through this before can help to get a sense that they are not alone in what they are experiencing. You can help them locate Alzheimer's caregiver and patient support groups in their area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in “Helpful Organizations.” His wife’s physician may also be able to give him some guidance on support groups in the area. Additionally, he can contact the Alzheimer's Disease Education Referral Center (ADEAR) at 1-800-272-3900, which has professionals who can help with his immediate questions, refer him to help in his area, and are available 24 hours a day, 7 days a week. Other useful agencies can be found under “Helpful Organizations.”

If your neighbor’s husband is open to advice, tell him that he can help his wife by allowing her to do as much as she is still physically and mentally capable of doing. For example, to help maintain an Alzheimer patient’s dignity and self-esteem, a caregiver should try to make the patient feel that they are a productive and valued member of the household and community. The husband’s well-meaning attempts to protect his wife’s well-being may actually be counterproductive. Therefore, within reason, her husband should not try to limit her responsibilities too much, and should in fact encourage her to participate in meaningful activities that she can safely accomplish (although driving by herself may not be one of these activities).

Even though your father-in-law's behaviors—removing clothes, incontinence, and other unusual behaviors—are disturbing, they are not uncommon in Alzheimer's and are merely a part of the disease course. Just remember that with Alzheimer's disease, most patients will have "good" days and "bad" days. Unfortunately, the good days tend to become less common as the disease progresses. Sometimes caregivers will notice that their loved one's condition suddenly worsens and will mistakenly attribute the symptoms to medications (or a lack thereof), but in fact the new behaviors are simply manifestations of the disease itself. The bottom line is that his behaviors should not be construed as anything other than symptoms of the disease; they are not meant to be rude, sexual, or indecent.

As to the incontinence, many patients with dementia have bladder control problems. Alzheimer's patients sometimes have difficulty getting to the bathroom in time. Sometimes medications contribute to the problem. The frequent urge to urinate can also be a symptom of a urinary tract infection. Therefore, it would be helpful to have your father-in-law see a physician to rule out medical problems as the cause of this behavior. If there is no underlying medical problem, then it is likely the incontinence is due to confusion caused by Alzheimer's disease. Your father-in-law may have trouble remembering what to do when the urge to urinate occurs. Some patients have trouble remembering where the bathroom is—or remembering in time to get there.

The following can help:

• Establish a regular schedule for taking him to the bathroom. Start with two-hour intervals - as well as first thing in the morning and after naps. Adjust intervals as necessary.
• Put nightlights in the bedroom, corridor and bathroom.
• Paint the bathroom door a bright color or put an eye-catching sign on it.
• Try protective bedding and adult diapers (a nurse can help you select these products).
• You will probably need to plan on using adult diapers for your father-in-law at some point during the illness.

Our mouths have a large number of nerve endings, which means that chewing on different objects can derive a great deal of pleasurable sensations. This is one reason why children can become orally fixated and chew or suck on pacifiers, blankets, toys, thumbs, etc. Your aunt may simply enjoy the sensations that chewing on her clothing or a blanket produces. Therefore, you may have to provide her with other objects to chew on as a substitute for her clothing. For example, a straw, a leather necklace or wristband, sugar-free lozenges or lollipops, or even different textured foods if she is capable of chewing and safely swallowing them (think apple slices, turkey jerky, rice cakes, etc.) may work as suitable substitutes for her clothes or her blanket.

You can also try distracting your aunt with an activity when she begins to chew on her clothing. She may be bored or anxious and this is her way of coping. Also, it is possible that she suffers from a dry mouth and thus may chew as a means to produce saliva. The residential home should provide her with plenty of fluids to drink; however, if the facility allows it, you can also give her a sports water bottle (the kind with a straw) that she can carry around to drink from throughout the day.

Finally, you may want to check with her dentist to make sure she does not have any problems with her teeth or gums that may make her want to chew on things.