Caregiving Questions

Patients in the later stages of Alzheimer's disease are easily confused, so moving such a patient to from one living facility to another can be challenging but it is not impossible.

Your father may be anxious or confused by his new surroundings initially, but with time he can be aided in accepting them as his new "home." Try to visit him frequently in his new home, and speak enthusiastically about how nice the new place is. Immediately following the move, try to get him back on his regular schedule as soon as possible. The more things that are "familiar" to him in the new environment, the sooner he will come to accept it as home. You can also ask the directors of both his current and new facilities for help in objectively assessing how best to manage the move, and also about any suggestions they may have to make the transition more seamless.

During the final stages of Alzheimer's disease, it is not uncommon for patients to stop eating and drinking, as they often lose the ability to chew and swallow. Depending on how much reserved fat a person has, it is possible for a person to last a few weeks without eating, though the body will weaken considerably as time goes on. Hydration, however, is another issue. Generally, most people cannot survive more than a few days without water or fluids.

However, you may want to have a doctor assess if your mother-in-law still has the capacity to swallow on her own. If she can still swallow properly, for instance, then it may be possible to provide her with assisted feeding (i.e., hand feeding), which may of benefit to her due to the human contact involved with hand feeding the patient. Your mother-in-law’s physician, along with a specialist such as a speech therapist, can help to determine whether hand feeding is an option based on whether or not she is still physically capable of swallowing. Such specialists can also demonstrate the proper techniques for assisted feeding. If, however, your mother-in-law can no longer swallow correctly anymore, then a feeding tube may be an option for consideration. For the caregiver of a dementia patient, deciding on whether or not to use a feeding tube can be a very difficult decision. So be sure to discuss this decision thoroughly with the your family and doctor, taking into account whatever your mother-in-law’s wishes or preferences—stated or otherwise—on tube feeding may have been. Please also consider talking to a counselor, your family or friends, or if you prefer, a family cleric for support and guidance during this time.

In some respects, how you would care for an Alzheimer's disease (AD) patient is not so different from any of the other patients you may deal with. For example, you should always treat AD patients with dignity and respect deserving of any other non-dementia patient, even if you think that the dementia patient can no longer comprehend your words or actions.

The biggest aids in working with AD or dementia patients are to develop a good rapport and to establish an effective means of communication. The AD patient may not be able to verbalize (or adequately verbalize) what they do or do not want, or what may cause them discomfort. Therefore, it is important that you speak in a clear, calm voice when explaining what it is you want the patient to do. Try to explain what you want them to do in terms of activities they might actually perform on a daily basis (i.e., brushing their hair, pouring milk onto cereal, etc.), or divide the activity into simple and easy to follow steps. Use simple commands and be sure to engage them directly, making eye contact, when you ask them to perform a task. The tone of your voice may be just as important as what you are saying, so always be sure to use a calming, pleasant voice. Avoid talking down to the patient, belittling their condition, or talking to others about them as if they were not there.

You and your fellow staff should insist that the facility’s management provides at least some form of specialized training for caring for dementia patients, even if it means that you or one of the staff has to deliver the training presentation yourself. Properly trained staff will not only be able to provide more effective care, thus ensuring a better quality of life for the patient, but also will help to improve confidence and coping strategies among the staff when working with dementia patients. The following training resources may be of help:

• Dementia Care Training Manual for Staff Working in Nursing and Residential Settings, by Danny Walsh. Jessica Kingsley, publisher. ISBN-10: 1843103184, ISBN-13: 978-1843103189
• Teaching Dementia Care: Skill and Understanding, by Nancy L. Mace. The Johns Hopkins University Press, publisher. ISBN-10: 0801880432, ISBN-13: 978-0801880438
• Dementia Care: InService Training Modules for Long-Term Care, by Jackie Nasso. Delmar Cengage Learning, publisher. ISBN-10: 1401898580, ISBN-13: 978-1401898588

Tell your husband that someone is coming to visit to help you with the housework because you are finding it too challenging to manage on your own. If possible, speak to the respite caregiver or agency to let them know about your husband’s reluctance to accept a respite caregiver. They may have some suggestions on how they normally proceed in this situation (which, by the way, is fairly common). You may want to keep the first few visits short—maybe only an hour or two—so as to ease your husband into the idea of having someone else in the home. As your husband becomes more comfortable with the aide, you can increase the length of time that the aide stays to help out.

Another option is to have your husband visit an adult care center for a few hours each week. These facilities have staff members who are experienced in caring for dementia patients, and generally offer social activities befitting of Alzheimer’s patients. You can tell your husband that it is a social club.

Tell her family that a “good time” for an 83-year-old woman, particularly one who has been diagnosed with Alzheimer’s disease, can be had by far tamer pursuits. Just spending time with her talking, reading, taking a walk or doing some other (non-alcoholic) activity she enjoys is beneficial to her emotional and cognitive well-being.

Alcohol, taken in excess, damages brain cells. As Alzheimer’s disease also damages brain cells (neurons), the fewer healthy reserve neurons there are in the brain, the more severe and rapid the disease may progress. So the woman’s family is in no way doing her a favor by getting her drunk on the weekends, and may even be hastening the progress of the disease.

It is difficult to say how exactly Alzheimer’s disease (AD) will affect your employment (at least initially) because I do not know the details of your disease state or your job. Suffice to say, many people who have been diagnosed with the early onset form of AD (which typically afflicts patients under 65 years of age) and are in the early stages of the disease, continue to work for some time following their diagnosis, again depending on how rapidly the disease progresses and the nature of their employment. It is good to continue working for as long as you can, because it helps to provide a sense of normalcy and routine in your life. It is important that you do inform you boss of your diagnosis when you feel ready (preferably sooner rather than later); however, it may be important for you to obtain the input of an attorney specializing in these issues.*

Alzheimer’s disease is considered a disability and is therefore encompassed by the Americans with Disabilities Act (ADA). Therefore, your employer cannot fire you on account of your diagnosis alone. Under the ADA, your employer is obligated to provide reasonable accommodations to allow you to work, which may mean changing job titles or positions. For example, if your current position requires a high level of responsibility, then perhaps a more suitable position would be one with less accountability. If however, you employer has made a reasonable attempt to accommodate your disability but there really is nothing else they can give you to do and/or you can no longer fulfill the requirements of the job, then your employer may ask you to leave. You do not want to be a potential liability to your employer, so it is a good idea sit down with your boss initially and then periodically to reassess your health status and your role/position within the company.

You and your physician can determine when would be the best time for you to leave your job, such as when you can no longer reasonably perform the functions associated with your job. Clearly, if any injury or harm could come to yourself or others as a direct result of your not being able to satisfy the job requirements (such as if you are a pilot, pharmacist, bus driver, or machinist, for example), then you may want to consider finding a different job with less responsibility. As for your primary caregiver, the Family Medical Leave Act (FMLA) will allow your caregiver to take up to 12 weeks of unpaid, job-protected leave per year to care for a disabled or incapacitated relative. Your caregiver must be considered an "eligible" employee, meaning he or she must have worked for his or her employer for at least 12 months (or 1,250 hours), and the employer must employ at least 50 employees at the caregiver’s worksite or within 75 miles of the worksite. For more information on FMLA, please see the Department of Labor.

*If you would like to obtain the input of an attorney, please contact Eldercare Locator, which is a public service of the Administration on Aging, a Department of Health and Human Services and is a nationwide service that connects older Americans and their caregivers with information on senior services. Their toll-free number is 1-800-677-1116; they can provide you with direction in finding resources in your community.

Dementia can impair the sense of temperature in a patient, as you are already aware. You may just have to set the temperature at a comfortable level and then dress your mother-in-law in easy to remove layers. This way, you (or she) can add or subtract clothing as necessary instead of constantly adjusting the temperature of the home. Keep the temperature cooler in the evening, and provide extra blankets at the foot of the bed. Make sure there is good air circulation in her bedroom at night as well—a ceiling fan or oscillating fan set on low can help.

Beyond this, it sounds as though your mother-in-law may be waking you at night, which means that her sleep-wake cycle may be disturbed. If this is the case, you can try some things to help get her back to better sleeping habits. These include:

• Try an early dinner or late afternoon snack.
• Use good bright 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.

Many of the symptoms you mention, such as confusion, mood swings and memory deficits, are definitely symptoms of Alzheimer's disease. However, you also mentioned that your mother's speech is slurred, which could indicate that she may have suffered a minor stroke (or several—sometimes they are referred to as "mini-strokes" wherein a single one may go unnoticed but several can have a cumulative effect on memory and cognition). Your mother may be in denial, but it is imperative that you get her to a doctor for a thorough examination. She will probably resist this idea, so make an appointment for her with her primary care physician and then beg, force or even trick her into going. The sooner she has a medical evaluation, the sooner it may be possible to get therapy for her. Many of the Alzheimer's disease medications, when taken early on, and may help to slow the progression of cognitive impairment.