Caregiving Questions

So long as the delusion that the person is experiencing does not cause them to become agitated, fearful, aggressive, or otherwise upset, then it is okay to go along with a patient's delusion. Oftentimes, if it is a harmless delusion (for example, a person may imagine that his or her long deceased spouse is visiting), it may provide some comfort to the individual.   You have to remember that patients with dementia lose the ability to think rationally over time and begin to live in their own reality. Therefore, going along with the world as they see it should not harm them and even may help to reduce their anxieties.  If, however, the delusion causes the person to become upset or agitated, then it is best to try to redirect this person's attention to a more calming topic or activity.

Asking to “go home” is also a fairly common request for Alzheimer's disease patients. This request can mean that your mother might feel anxious or fearful of something or else she feels compelled to fulfill some obligation or task. She might, for example, be referring to a home from her youth, or perhaps her first home as an adult. She might think that she still has responsibilities to perform there, or else that it was a place she felt needed and safe.

Additionally, your mother is probably still anxious and confused by her new surroundings.  With time she can be aided in accepting the care facility as her new "home." It is wonderful that you and your family visit her frequently; continue to do so.  Marking your visits on her calendar is a great way to provide a visual reminder of the visit. Although it may be difficult at times, be patient with her. It is not uncommon for it to take several weeks and even some months for a dementia patient to fully adjust to living in a care facility.  Always remember to try to speak enthusiastically about how nice her new home is.

Perhaps the facility will allow some of your mother's personal effects (pictures, a favorite blanket, etc.) to be used in her room. The more things that are "familiar" to your mother in the facility, the sooner she will come to accept it as home. Be sure that the items are not valuable, in case they should become lost or damaged.
 
When you speak to your mother, continually reassure her that you are trying to provide the best possible care you can for her. Sometimes, patients with Alzheimer's disease become more confused and agitated in the evening (a phenomena known as “sundowning), which may be why your mother phones you upset each night. Continue to reassure your mother that no matter what, she is loved by you all and she will be cared for. Because of the nature of the disease, you will undoubtedly have to repeat this conversation many times.  After reassuring her, you can then try redirecting her attention to a more enjoyable topic.

Try not second-guess yourself about your decision.  Take consolation in knowing that your mother is now much safer in her current care home than she was living by herself in her own home. Her welfare and safety are the most important considerations, and therefore her current facility is the right place for receiving all of the care she needs now and will inevitably need in the future.

Assuming your parents have sufficient financial resources of their own, then providing care for your father should not be too much of a hardship. This situation is actually preferable to one in which your parents were dependent upon federal or state assistance programs, because such programs may not always cover the full cost associated with, for example, hiring full-time in-home care. If your parents' financial situation is such that they can afford additional caregiving help, then it would be wise for your mother to hire a professional in-home caregiver who could assist her in caring for your father. The caregiver can provide as much help as your mother needs and/or can afford: from just a few hours a week to full-time care.  Alternatively, you may want to discuss with your mother the possibility of placing your father in a care facility, particularly if his condition worsens and he requires more extensive and constant care. Caring for someone in the late stages of Alzheimer's disease can be extremely taxing for a single caregiver, and it may be too much for your mother to handle on her own.  Praise your mother's caregiving efforts, but also let her know that for her own physical and mental health, it is imperative that she gets some additional help.  

The clinical term you are looking for is simply Alzheimer's disease or dementia. This is what the disease does: it impairs a person's memory, robs his personality, and can make a person behave completely out of character. Many times, the only memories that are left untouched by the disease are the oldest ones, such as when the person was young. Additionally, Alzheimer's disease can affect the portions of the brain involved in social behavior and rationality/reasoning, causing the patient to act in socially inappropriate ways and/or to live in his or her own reality. This is likely why this man you speak of may think he is only 20 years old and single instead of 80 and married.

Communication boards are a low-tech means to allow dementia patients who can no longer speak, or who can no longer speak well due to language impairment (aphasia), to communicate on a basic level by pointing to symbols and pictures on a board or on cards. This allows the patients to express their basic needs (hunger, thirst, toilet, pain, etc.) as well as to communicate simple emotions (how much they like or dislike something, if they are tired, bored, happy, anxious, etc.) and desire for activities (watch TV, listen to music, go for a walk) which they could not have otherwise expressed. In this way, communication boards allow patients to have more involvement in their own care, which can help to reduce anxiety on the part of the patient as well as to decrease frustration for both patient and caregiver alike. And because the cards or boards provide visual reminders of what has been discussed, the patient can better “keep up” and contribute to a conversation, thus offering a more enjoyable experience for the Alzheimer's patient when communicating with others.

Your approach will mainly depend on your relationship to the person. If you are very close to the person (for example, the person's spouse, child, sibling, grandchild, etc.) you may be able to cajole the person into seeing a doctor by emphasizing how much you are concerned for his or her overall health and how much better you would feel if he or she had a checkup. If you are around the same age as this person, you can just say that a regular checkup is something that everyone does when they reach a certain age. You do not need to mention Alzheimer's disease at this point; instead focus on another health concern (high blood pressure or swollen joints, for example). Insist that you would like to help by scheduling the doctor's appointment for him or her. You can then alert the doctor's office that the main concern should be memory and cognitive testing.

If, however, you are simply a friend or co-worker, you may have to just risk offending the person and suggest that they visit the doctor for a memory screening test. Again, emphasize that memory testing is routine and just something all adults have to endure as they get older.

If anything, wearing a retainer will make it more difficult for your father-in-law to speak clearly. Perhaps your father-in-law may be confusing a retainer with some other device or treatment. He may, for example, not produce much saliva and this is may contribute to difficulty in speaking. If this is the case, then allowing him to suck on something (such as a sugar-free life saver hard candy) may stimulate saliva production.

Moving a dementia patient to an assisted living facility can be difficult all by itself without the added complication of the loved one's refusal to go. Your mother-in-law may feel that it is not yet necessary for her to move to assisted living. She does not understand why you want her to live somewhere else other than at home. Reasoning with her is unlikely to help because most dementia patients no longer have the ability to reason. Instead you can try begging, bribing and bargaining with her. Offer her something she really likes (her favorite food, a trip to the hairdresser, a new purse or whatever it is she adores) in exchange for just visiting the facility. If this works (and the facility is willing to help you on this), try going for longer visits and staying with her during the visits. You do not want her to get the feeling that you are abandoning her. You want her to feel less anxious about her new home; it may take several visits before this happens. Make sure you always talk positively about the facility when you are in her presence.

As much as possible, involve her in the process too. Perhaps she does not like the facility you selected. Are there any other options available? The move may seem less scary to her if she can select which facility she prefers. Also, is there someone else that she trusts or respects, such as a doctor, friend or clergy, who could help you to talk to her about this? She might be more agreeable if someone else suggests that it is time for her to move to assisted living.

If she is amenable to visiting the facility (and the visits seem to go well), then she might also be willing to have a short stay at the facility. You could make a deal that if she tries out the facility and stays for a certain length of time (four weeks, for example) and if she still really doesn't like it, then she can come back home. However, you have to be prepared hold your end of the bargain and move her back if she remembers the deal and wants to come home at the end of her stay.

Finally, unless she is an immediate danger to herself or her home (she left the gas on or has started a fire), then perhaps you could work out a temporary compromise with her. For example, perhaps additional help, such as a hired caregiver, would allow her to remain at home for a longer period of time before it becomes necessary to move her to an assisted living facility. This may take some of the burden off of you and make her happy in that she can stay at home for longer.