Caregiving Questions

Sensory changes are very common in the elderly and are not the same as Alzheimer's disease. When auditory acuity diminishes, the brain sometimes fills the resulting silence with invented sounds such as voices or music, but a person's mind may be sharp even though their hearing no longer is. The disturbing and accusatory character of the voices raises another possibility, that your grandmother might suffer from a severe depression with psychotic features or from another disorder in which appreciation of reality is diminished. Her hearing, medical health, and mental status should be carefully evaluated before concluding that she has some form of dementia.

Maybe the outings with your mother cause her to have some latent confusion and maybe they do not. For example, it is equally possible that your mother has experienced a noticeable decline in her cognition, but it has nothing to do with her excursions with you. The confusion and the outings may not be related at all, they just may be merely coincidental.

It is more important that you spend time with your mother as part of a routine. If it has been your habit to visit your mother once a week, then by all means you should continue to do so. You do not necessarily need to take her somewhere—you can just sit together and visit or perhaps take a walk around the facility grounds outside. If these visits do not seem to affect her (that is, if she does not seem disorientated the next day), then once in a while try taking her on a short outing. If these short outing go well, then you can increase their frequency. You can prepare your mother for the outing in advance by clearly marking it on a calendar in her room, and reminding her about it several times the week beforehand. This can help to prepare her mentally and to lessen any anxiety she might have about leaving the facility, which could aid in reducing confusion that may result following the outing.

All of these alternative therapeutic techniques are wonderful and can really help to improve the mood of an Alzheimer patient. Massage therapy, reading (to her or with her), music therapy and exercise can all aid in decreasing stress and anxiety. This in turn is beneficial to the caregiver, because a patient who is not anxious or agitated will more likely have fewer negative or “problem” behaviors (such as yelling, hitting, etc.) than an anxious patient. There are also several incidental reports that certain foods can help to reduce some of the cognitive symptoms of the disease, though these reports have yet to be confirmed in large clinical trials. For example, coconuts (or coconut milk or oil), apple juice and turmeric (which is found in curry powder) have all been touted as potential therapies for Alzheimer's disease (AD).

While all of these alternative treatments are helpful, they are still not as powerful as the current medications available to AD patients. Cholinesterase inhibitors (such as donezepil) and NMDA receptor antagonists (such as Namenda®) have been clinically demonstrated to slow the progression of cognitive impairment, and which if taken early, can help to extend the amount of time before a patient requires extensive full-time care (such as in a care facility). Of course, the choice to take such medications always rests with the patient. But please speak to your wife's doctor, or a few different doctors even, and make sure you both understand all of the pros and cons of taking AD medications before you completely disregard them.

Taking care of a loved one who has Alzheimer's disease can be quite challenging. Taking in your mother-on-law to care for her in your home places demands not only on you as the primary caregiver, but also on your entire household. You may feel exhausted from constantly having to balance your mother-in-law' needs against those of your family's, and for this you may even resent the disease. Upsetting as this is, it is all quite common.

First of all, congratulate yourself for the selfless act you are undertaking. You may never get the recognition you deserve from your caregiving work, but you should realize that you are performing an invaluable service for your mother-in-law. Secondly, although your parental instincts may want to protect your children from your mother-in-law's disturbing behaviors, the reality of the matter is that your children are learning valuable life lessons: we take care of our loved ones because family is important; and death and disease are just as much a part of life as are birth and wellness. If you try to stay compassionate in your attitude toward your mother-in-law and set an example for your children, hopefully they will take away something more from this whole experience than “grandma is loud and acts strangely.”

Based upon the description of your mother-in-law's condition, it sounds as if she is in the final stage of the disease, which might last anywhere from a few months to a year or more. In the meantime, if your children are old enough and it is not too inconvenient, perhaps they could study at the local library or at a friend's house a few nights a week. Remind them that their grandmother does not do these things to purposely annoy or upset them, but that her behaviors are part of her disease. A bit of empathy and understanding can go a long way toward developing a tolerance toward obnoxious behaviors such that they become less of a distraction.

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.