Caregiving Questions

Based on your description, your husband still seems to be doing fairly well overall. He is still mobile and can go to the toilet on his own, has as good sleep schedule, and accepts food—all of which are good things and would argue that he is not yet in the final stages of the disease. Therefore, it is very difficult to say how much longer this current stage will last: it could be months or it could be years. The rate of disease progression varies considerably with each patient, and is not even consistent for any given patient (that is, a person may have stable symptoms for several months only to have a rapid decline over the course of a few days). So try to make the most of this time with your husband if or before he should become completely incapacitated.

Also, be aware that the medications your husband is taking may still be helping, albeit much less effectively than previously. Therefore, you may notice an increase in functional or behavioral symptoms once the medications are discontinued, which may make your job as a caregiver more challenging. You should weigh the potential advantages (lowered expenses due to not having to purchase the medications, no possibility of drug side effects) and disadvantages (possible increase in the severity of symptoms, more difficulty for you as the caregiver) of discontinuing your husband’s medication with his doctors before making any final decisions.

There are numerous medical conditions that have symptoms mimicking those of dementia; many of these conditions may be treatable. But it takes a trained clinician to determine what might be the cause of your father-in-law’s recent behaviors. The sooner a diagnosis is obtained, the more potential for treatment may be available.

Your father-in-law is probably aware of his declining cognitive abilities and therefore is in denial and/or is very defensive when it comes to people criticizing his behavior (which may be yet another reason why he no longer plays golf with his friends). This, unfortunately, may make it even more difficult to get him to see a doctor.

You can start by getting your mother-in-law to contact her husband's primary care physician to relay your (and her) concerns. The doctor will probably want to see your father-in-law for an exam, such as a memory screening exam. You and your family will have to be a bit creative here, but it may be possible to bribe, guilt or even trick your father-in-law into seeing the doctor. Some tactics you might use include:

• Tell him 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.
• Put the focus on you. Tell him that you (or your spouse) are concerned about his health and that it would make you feel better if he got checked out. If you have children, say that your child is concerned about “granddad” because she wants to be sure granddad will be around for her birthday/graduation/etc. Guilt sometimes helps get a patient to the doctor.
• Enlist the help of his wife. Get her to say that she has a medical problem and that she would feel better if he accompanied her to her doctor’s appointment (technically the appointment will be for him, and you will have to let the doctor’s office know of your plans in advance). Once there, the forewarned doctor can just examine him too, since he’s already there.
• Enlist the help of his friends or a person he respects. A former boss or co-worker, a clergy person, an attorney, etc. Get this person to suggest to you father-in-law to visit the doctor for a check-up. Better still if the person is around the same age as your father-in-law, that way he or she can say that it’s just something everyone does when they reach a certain age.
• If your father-in-law does indeed have dementia, don’t think that you will necessarily be able to reason with him because his sense of rational will be distorted or absent. But you can still talk to him and explain how even though it is frightening to have to face, early diagnosis of a health issue is a good thing, because early medical intervention can usually forestall the problem from advancing.

It is fine to take your mother on outings so long as you try to adhere to a general schedule. Alzheimer’s disease patients do best when there is a regular routine or schedule that they follow each day, such as for meals, waking, nap or bedtimes, bathing, toileting, and other activities. Check with your mother’s care home to determine the schedule they have her on, and if you should take her out for the day, try to do the things she would normally do within the scheduled times. Better still, with the help of her care facility you can build in a short outing as part of regular schedule. For example, you could arrange to take her for a 1-4 hour outing a few times a week.

Overnight outings may still be feasible while your mother is in the early stages of the disease so long as the care facility does not have a strong objection to the idea. Talk to the facility first to find out if she is sleeping well at night—that is, does she have insomnia, does she wander at night, etc. If you should choose to have your mother overnight at your home, pay close attention to her behavior for signs of agitation. Again, stick to whatever routine the facility uses for dinner and bedtime. Even with a routine, your mother may become disorientated in the evening and become anxious and upset. If she has a tendency to get up in the middle of the night and wander, this could also pose a safety problem. As the disease progresses, however, it would probably be best for her to stay in her own bed at the facility each night. Too much disruption in a dementia patient’s schedule can cause unnecessary anxiety and stress.

In the later stages of Alzheimer’s disease, a person can become immobile. Your wife’s inability to stand may therefore be directly related to the progression of the disease, or it could be caused by another unrelated condition altogether. Unfortunately, in these neurodegenerative diseases, it is sometimes impossible to clearly pinpoint which disease causes which ailment. Regardless, it is important that her position (be it sitting or lying down) is changed regularly to prevent sores from developing. Also, to the best of her ability, try to encourage your wife to do some stretches and arm and leg lifts from a seated position. You will have to help guide her in the movements, but just go slowly and let her try to do as much as she can on her own. The goal is to keep her muscles active to slow muscle deterioration. Any physical activity is good—it does not need to be rigorous and it is actually better if she does not overexert herself.

When an Alzheimer’s patient becomes unable to communicate, it is essential to continue to provide him or her with human contact in any form. Even though it may seem as if your wife cannot hear or respond to you, you presence near her is likely a calming influence. Many caregivers are certain that some of what they say in the presence of their non-communicative loved ones gets through. So continue to talk to her and tell her you love her. Also, don’t forget about non-verbal communication. Touch is very important too, so hold her hand, gently stroke her arm or brush her hair, or give her a gentle shoulder massage. It may not seem like much to you, but these little things can improve her mood and affect her overall well-being.

Social gatherings, even if there are only a handful of people, can be overwhelming and sometimes frightening for a person with Alzheimer’s disease. The person can become confused and over-stimulated by the noise and commotion, which can lead to anxiety and agitation. While social interaction in general is good, it is best to try to tailor the interaction to suit your mother-in-law’s condition. Therefore, perhaps going to fewer such events would be warranted, or only attending those events with smaller gatherings. Before you accept an invitation on behalf of your mother-in-law, make sure the event is at a time that is good for her (i.e., it does not interfere with naps, or is too late at night). Typically, Alzheimer’s patients are better in the morning and early afternoon, so an evening event may be more challenging for them.

When you arrive at the event, find a quiet place where you can take your mother-in-law. This will be her little sanctuary away from the noise and confusion of the party, particularly if there are children present. If the event is at someone’s home, for example, ask in advance if a separate room or secluded area can be made available for your mother-in-law to sit in. If people want to visit with your mother-in-law, bring them to her a few at a time. Even if you think that your mother-in-law will know who these visitors are, be sure to introduce each one and provide some details or a brief description of who they are. For example, you can say “This is Cathy, your niece. We stayed at her house last summer and had a good time swimming in the lake.” Not only will this help to jog your mother-in-law’s memory about who the person is, but it can also make for an easy conversation starter.

Alzheimer’s disease can often cause a person to become apathetic or depressed, which can also lead to the person becoming lethargic and easily tired. It is possible, for instance, that your mother is mildly depressed, and therefore prefers to sit in this position. It is equally possible that your mother simply finds this position peaceful or calming, and may rest her head on the table as a way to relax or even “meditate,” sort of like a coping mechanism. Maybe if there are people or commotion around her and she does not feel like being social, she may just put her head down as a way to communicate her desire to be left alone. Sometimes, however, Alzheimer’s disease simply causes people to have odd behaviors that they did not have before the disease—this may be one of those unexplained behaviors.

Try talking to your mother when she is in the head-on-table position. Does she communicate with you readily or is she non-responsive? Does she keep her head on the table or pick it up when you start talking? Ask her about it. Is it something that is enjoyable to her (the smoothness or coolness of the table) or is it because she is bored, tired, afraid, etc.? She may not tell you directly, but there may be some emotion underlying her response which can help you determine why she does this.

If you think that she seems depressed or apathetic, speak to her primary care physician. A doctor’s evaluation could help to determine whether or not she is truly depressed, and whether she could benefit from anti-depressant or anti-anxiety medication.

There are many such keyless devices available that range in price from under $100 to over $700 depending on the features. You can search for them through an online shopping site such as eBay or NexTag, or simply search for “keypad door lock” or “keyless door lock” in your favorite search engine. Alternatively, you can contact a locksmith in your area who can provide recommendations and install the device for you.

Alzheimer's disease can cause a patient to have decreased energy, such that they sleep quite a lot and still feel tired all the time. Some patients tire much more easily, and find that they no longer can be as active as they once were. Patients can also become apathetic or depressed, which can cause them to lose interest in daily activities. Sometimes, however, this lethargy can be a side-effect of one or more of the medications being taken. For example, one of the commonly reported side effects of Lexapro is sleepiness. Therefore, you may want to contact your wife's primary care physician to let him or her know what is going on. Perhaps an adjustment to her medications may help.

In the meantime, make sure your wife gets exposure to bright light (or sunshine) during the day and dim, calming lighting in the late afternoon and evening. This can help to keep her internal clock set correctly so that, ideally anyway, she will want to sleep at night and stay awake during the day. You can also encourage your wife to perform some sort of physical activity during the day, as exercise can aid in establishing good sleep patterns.