Caregiving Questions

Being a full-time caregiver can be a difficult job that is oftentimes frustrating and thankless. You are not going crazy, you are just feeling overwhelmed. It is great that you do find some time to exercise and do some things for yourself, but it sounds like you could benefit from some more help and time off.

First, please find a caregiver support group in your area and talk to them. Other caregivers have experienced, or are experiencing, similar problems, stress and emotions, and therefore are in the best position to relate to your situation. You can search for Alzheimer's caregiver and patient support groups in your area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in "Helpful Organizations." It is fairly common for caregivers to feel guilt that they are not doing enough, or that they should be giving more or being more tolerant, etc. Just keep in mind that you are only human and you are doing your best. Caregiving, though overall rewarding in the respect that you are caring for your loved one, can be very challenging on a day to day basis, and sometimes it’s hard to keep the big picture in focus.

Therefore, I would strongly recommend that you consider getting some respite care help for your husband. Respite care workers can come to your home for a few hours a week (or whatever you arrange) and relieve you of your caregiving responsibilities. Use this time to relax and recharge in whichever way you like best. Alternatively, if your husband is still capable of leaving the house and interacting with others, there may be senior centers in your area which can take your husband for a few hours a day. Don’t be afraid to ask for help from family and friends as well. Be specific about what you might want help with—they may be willing but aren’t sure how best to help, so you will need to let them know exactly what it is that you could use help with.

Your local Area Agency on Aging (AAA) Eldercare Locator can connect you to helpful services in your area, including respite care options. Click on the above link to find the phone number of your local AAA or call 1-800-677-1116.

Finally, it couldn’t hurt to be evaluated by a therapist, psychiatrist or psychologist independent of your medical doctor. It is possible that you could be suffering from mild depression, which could be causing your sleep problems, body aches, and mood swings. While there are antidepressants that could be helpful, there are also non-drug options such as talking therapy. If you don’t feel comfortable talking to a therapist, then find someone whom you can “unload” on when you feel fed up at home—such as a friend, clergy, or close relative.

Alzheimer’s disease (AD) can cause a person to have decreased inhibitions for inappropriate behaviors, which is why some AD patients might go so far as to undress in public. AD can also cause persons to have repeated behaviors or mannerisms. So in your father’s case, he may repeatedly lick his lips (a repeated inappropriate mannerism) in response to when he sees someone who is attractive.

Repetitive behaviors and strange habits such as your husband’s are characteristic of Alzheimer's disease, particularly in the moderate stages of the disease. Unfortunately, there is no way of knowing how long this stage—or his behaviors—will last because every patient is different and follows his or her own disease course. But every time you start getting frustrated with your husband, just keep in mind that he is not doing these things to purposely upset or annoy you. If he could help himself, he would not be this way. So even if you remind your husband not to do something, chances are he will forget what you have told him—this is the nature of the disease.

Perhaps your husband feels like he needs to keep his hands busy, or he may think that he is helping you by picking up leaves or rearranging the laundry. Rather than struggle with him over these behaviors, you can try to redirect his energy toward a useful action, such as folding laundry, peeling vegetables, vacuuming, dusting, or any other simple job he might be capable of doing. Maybe the clothes will end up being folded oddly, or the potatoes won’t be peeled very well, but don’t let it bother you. What matters is that your husband will be kept busy and, more importantly, he will feel that he is needed.

The combination of a Namenda (generic name: memantine) and a cholinesterase inhibitor (such as Aricept) is commonly prescribed for Alzheimer's disease patients. This combination of medications is generally well tolerated, though of course, there are some common side effects associated with Aricept such as nausea, vomiting, diarrhea, and weight loss. Additionally, a few reports have indicated that this combination of agents might have a greater therapeutic effect than taking a cholinesterase inhibitor alone. However, these studies have yet to be confirmed.

Unfortunately, urinating in inappropriate place is not uncommon in Alzheimer’s patients. There are several reason why this might be happening with you father. Most often the problem lies in the patient’s perception of the bathroom, toilet or both. Due to the confusion or anxiety created the patient will then seek out an alternative. Being in a care facility, it is most likely that precautions have already been taken to eliminate these issues but it is worthwhile ensuring this is the case.

Starting with the toilet itself, make sure there is a strong contrast between the toilet and the surrounding wall and floor. Due to changes in perception it can sometimes be difficult for Alzheimer's patients to perceive objects or gauge depths and distances. Handrails and anti-slip strips on the floor of the washroom will also help to make your father feel more secure, in case he is anxious about falling or not being able to lift himself from the toilet. It may also help to install a lock on the closet door that the facility can lock each night and unlock in the morning. At least this way he will not be able to use the closet as at toilet at night. Finally, even if he does not need to go, try taking your father into the washroom as much as possible and getting him comfortable with it and with using the toilet. He may just be apprehensive of the room and may need reassurance that there is nothing to fear or be anxious about.

Because of the nature of the disease, Alzheimer's patients often can suffer from paranoia or suspicions that people are stealing from them. You and your brother will have to provide continual calm reassurance that her possessions are safe and have not been taken. Your mother may be anxious about the prospect of moving, which may be causing her to have some anxiety. If this is the case, you will also need to reassure your mother that the move is a good thing and that she will be loved, cared for and appreciated no matter where she lives.

If you have not already done so, now would also be a good time to speak to an attorney who specializes in elder issues to ensure that all of your mother’s affairs are in order. The attorney may advise you and your brother to make an inventory of all of your mother’s most important possessions and holdings. This serves three purposes. First, it provides some reassurance to your mother that her belongings are not being taken. You can go through the list with your mother each time she accuses you or your brother of stealing things and show her that all of her things are still there. Second, your mother may have relatives who are unaware of her diagnosis and therefore may believe her if she tells them that you are taking her belongings. You then have documentation that nothing has been taken. And finally, the inventory will be very handy when it does come time to move your mother, because then you can quickly assess what needs to be moved, stored, or removed, etc.

As for eating, it is common for Alzheimer's patients to lose interest in food and eating. Alzheimer's disease can affect a person’s sense of smell and taste, and therefore the person may no longer find their favorite foods enjoyable or even palatable. Alzheimer’s disease patients also can forget to eat, or they can become confused about how eat altogether. Whatever the issue, it is best to try to eat with your mother as much as possible. She may need gentle verbal reminders, for example, about what to do or how to use the utensils. Do not rush your mother to eat, and do not expect her to eat on your schedule. She may, for instance, feel more comfortable eating several smaller meals throughout the day then eating three large meals. Keep foods simple but nutritious, and encourage her to eat just a few bites of food each time. You can also try experimenting with different flavors. Because her sense of taste may be diminished, your mother may now prefer foods with stronger or spicier flavors.

Also, make sure there are no medical reasons why your mother may be refusing to eat. Perhaps she has mouth ulcers, a tooth ache or ill-fitting dentures, or suffers from some gastrointestinal problem. A doctor’s examination can help to rule out these concerns. So long as she is drinking enough fluid and is not losing an excessive amount of weight, then it should not be too much of a concern if her daily intake of food decreases slightly. However, you can also try substituting a meal a day with a liquid meal supplement (such as Ensure), which may be easier for her to consume and can provide her with necessary calories and nutrients.

Soothing pastel shades, light blues, peaches, pinks, greens, and beige are usually recommended colors for use in homes for Alzheimer’s patients. It does not appear that an Alzheimer’s patient would find any color affecting them differently than anyone else. In the design of a room the goal is to create a calm peaceful atmosphere, so bright colors and patterns should be avoided. Alzheimer’s disease patients may have difficulty discriminating between similar color intensities, such as light blue or light green. Therefore, if you want to want to highlight a particular feature, such as the door to the bathroom, make sure you use a contrasting color.

A few other recommendations for decorating a room include:

• Using flat as opposed to gloss paint to reduce glare.
• Using contrasting colors to highlight handrails, handles and door knobs.
• Painting stairs in contrasting colors between the stair and the riser.
• Fixtures that may prove to be obstacles such as mantles and knee walls can also be painted to contrast.

Both behaviors you describe are typical of an Alzheimer’s patient. Issues with personal hygiene, especially bathing, are a common manifestation in early stages of Alzheimer’s. Your mother-in-law may feel uncomfortable with the prospect of bathing, as she may feel a loss of a sense of privacy. She may also be confused about what to once in the bath. Vision problems can confuse patients as well, as they may have difficulty judging the depth of water or may be confused by mirrors or other reflective objects in the bathroom. You want to make sure that her bath is comfortable (adjust water temperature, make sure the room is warm, etc.), safe (make sure there are handrails, anti-slip mats and good footing), and to the best of your ability, provide her with some privacy. For more tips, please see our section on bathing.

Because Alzheimer's disease affects each person uniquely, it is impossible to predict what else your mother-in-law might do (or not do) in the future. Sometimes patients can become belligerent and argumentative, others may stay passive or even become non-communicative. Make the most of every lucid moment she may have, and appreciate the fact that she can still communicate with you.

Your father may be producing excess saliva (hypersalivation) which may be why he needs to continually spit. If this is the case, sucking on a cough drop or other hard candy will only make this problem worse, as it will encourage the production of even more saliva. Have your father evaluated by his physician to determine if his saliva production is “normal” or if he is suffering from hypersalivation. If the latter is the case, sometimes this is caused by certain medications or drug interactions. For this reason, you should discuss any new medications (even over-the-counter ones such as Mucinex) with his physician before they are added to his regimen. His doctor can review the medications he is taking and may decide to adjust them accordingly.

If this behavior is not caused by hypersalivation or another medical condition, then chalk it up to one of those odd behaviors that just are a part of Alzheimer's disease. It sounds like you are doing your best to remind and encourage your father to spit in the appropriate locations. If this still hasn’t helped, you may just have to add more trash cans around the house, particularly in those areas where he likes to spit, and accept the fact that he is doing his best to comply with your requests. It is often very difficult to change such behaviors in Alzheimer's disease patients, so anything you can do to adapt your routine to his new behavior (rather than having him adapt his behavior to your mother’s house rules) is definitely a help. Remind your mother that he is not purposely trying to annoy her, and that he would not do it if he could help himself. Although it may be hard, try to find the humorous aspect in the situation. A sense of humor can go a long way in helping to deal with such difficult behaviors.