Caregiving Questions

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.

Moving an Alzheimer's disease patient to an assisted living center can be difficult all by itself without the added complication of the loved one's refusal to go. Your mother 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 (a trip to the hairdresser or her favorite restaurant, a new scarf 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 others (she leaves the gas on, starts fires, wanders outdoors at night, etc.), 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.

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.

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.

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.

Repetition is probably the best method to get someone, even a person having Alzheimer's disease, to remember something. The more often someone is exposed to something, the more likely they are to remember it. However, don't limit yourself to simply repeatedly telling your mother to use a walker. Use other means of reminding her such as written memos (post-it notes on places you are sure she will see), or pictures or drawings showing her using the walker.

It is also possible that your mother does not use the walker because it is uncomfortable or awkward for her, so be sure to check that it is properly fitted for her size and that it has comfortable grips. It might also be that your mother simply is embarrassed that she has to use a walker; her pride might be what is impeding her from using it, not her memory. Whether or not this is the case, be positive when you remind her—don't berate or belittle her for not using her walker. Keep telling her that you are concerned for her safety, and that you would feel much better knowing that she is using her walker.