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.

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.

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).