Caregiving Questions

First, you might want to consider asking your siblings to visit your mother in person, especially if it has been awhile since their last in-person visit. Sometimes an Alzheimer's disease patient can sound perfectly fine on the phone and can give the impression that they are not as badly affected by the disease as they really are. When the family of an Alzheimer’s disease patient does not see the patient’s day-to-day behavior or symptoms, the family may get lulled into a false sense that “everything is okay” and that the caregiver is just exaggerating how bad the patient’s condition is to get sympathy or attention from the other family members. If your siblings come to visit, they may then witness first-hand what you are talking about.

If an in-person visit is not an option, you need to stay resolved for your mother’s sake. Because your siblings have ignored your requests to not upset your mother, you will have to take more drastic measures. Lay down some new rules. Give them a list of topics that are “safe” and those that should be avoided. Let your siblings know that from now on when they call to speak to your mother, they will be placed on speakerphone and you will moderate the conversation. You will help to guide the conversation to “safe” topics, but if they persist in talking about distressing topics, let them know that the phone call will be ended immediately. You need to be your mother’s advocate when she cannot say that something is disturbing to her. Ask that your siblings work with you in making your mother feel safe and happy instead of distressed and agitated. Remind your siblings that you all want the same thing: to make your mother as happy and comfortable as possible. So asking that they simply limit the topics of conversation with your mother should be a perfectly reasonable request on your part.

Looking through old photo albums is always a good activity to do with someone who has Alzheimer's disease. He or she may not remember all the faces or stories in the pictures, but that is fine. You can help by just narrating the photos and not quizzing the person. For instance, constantly asking “do you remember so-and-so?” or “do you remember this trip to the lake?” can be frustrating to a person with Alzheimer’s disease and can make him feel ashamed if he cannot recall the persons or places in the photos. It is better to just casually narrate the photos.

Examples might include:

• This is Susie and her crazy dog that once tore up mom’s favorite slippers.
• I like the hairstyle on this lady.
• These people look like they are having a fun time at the party.
• Look at the snow on that house!

This allows the person to participate in the discussion without actually having to remember who or what they are looking at. The patient may surprise you and be able to tell you a story or two about the photos. Especially if the photos are old, it is not unheard of for a person with Alzheimer's disease to clearly remember a past event but forget what happened to him or her just that morning.

You can do the same when talking to the person by asking open-ended questions instead of questions that require a specific answer. For example, instead of asking “do you remember the Christmas when “X’ happened,” ask “what do you like most about Christmas?” or even “what is your favorite holiday?” In general, you will have to gauge the response of the person to determine if your topic of conversation is in any way distressing him. If you sense he is becoming agitated, simply change the topic to something more agreeable—the weather, sports, anything mundane—until the patient calms down.

If you occasionally visit a person with Alzheimer's disease, it is certainly very helpful to reintroduce yourself each time you visit or else have a caregiver give the introduction. A good introduction will not only include a name and relationship to the patient, but also a brief description or story to hopefully engage a memory. For instance, you can say “this is Brian, your son-in-law. He and your daughter Lucy just celebrated their 20th wedding anniversary. When they were engaged, you went fishing with Brian to ‘see what he was made of,’ which was pretty funny because you were the one who got seasick.” This gives the patient a little something to go on in case they cannot immediately pull the name “Brian” out of their memory. And even if the patient still does not recognize the person being introduced, the introductory story can provide an opening for a conversation on a related topic.

You and your husband will have to continually re-evaluate your mother-in-law’s condition as to whether or not it is safe to leave her alone. She could easily have an accident (or cause an accident) and may not have the wherewithal to contact you at work in case there is an emergency. You cannot assume that she will remember how to use a phone and dial your work number. Simple tasks such as this can be overwhelmingly confusing for a person with dementia, even if they have successfully performed the task in the past.

Consider the following when trying to decide whether or not she should be left alone:

• Does she seem agitated or depressed when you leave her alone? 
• Can she recognize an emergency situation? Would she be able to phone for help?
• Does she wander or leave the house? Does she become confused when she leaves the home?
• Does she try to do things she used to do, but are now unsafe for her to do alone (use the oven or other appliances) or at all (drive a car)?

In the meantime, make sure you safeguard the home:

• Install locks on doors of rooms and cabinets that your mother-in-law has no need to access.
• Install sturdy handgrip bars by toilets and tubs.
• Make sure walkways and stairways are clear and have no tripping hazards.
• Unplug stoves or microwaves when you leave.
• Make sure there are no open flames in the home.
• Put up signs on exit doors that will discourage your mother-in-law from leaving (Stop, Do Not Enter, etc.)

You also might consider installing locks on the doors that require a key (or keypad) from both directions (to enter and exit the home). Finally, you may want to consider purchasing a medical I.D. bracelet for your mother-in-law.

Mouthing non-food objects has been reported in patients with Alzheimer's disease (AD) and with frontotemporal dementia (FTD), but unfortunately there does not seem to be any way to stop the behavior.

Some suggest the reason that dementia patients put everything in their mouths is because they are fulfilling a basic need, such as suckling, or else they have heightened oral sensitivity. Sucking on something may be soothing to the lady, much the same as sucking on a pacifier is soothing to an infant. Others suggest that the patient may be doing it out of boredom or else because they can no longer discriminate between food and non-food items.

Because there is no way to prevent the behavior, you only option is to try to safeguard the lady’s home environment against possible choking or poison hazards. If she is in a care facility, then she may require more supervision or more frequent checks. This will be a challenge, but it is necessary to ensure her safety.

The best you can hope for is that this phase will pass and soon she will go back to not putting everything in her mouth. You can also try giving her a few safe items that she can mouth. Teething toys used for babies might be one option (make sure you regularly clean/sanitize the items). They might keep her satisfied enough that she may not feel compelled to mouth other items.

Temporary episodes of lucidity can sometimes occur in Alzheimer's disease. Because of the nature of Alzheimer's disease, a patient may have brief moments of clarity interspersed amongst long periods of confusion and forgetfulness. Agitation and paranoia are also commonly seen in the mid-stages of the disease, which is consistent with the stage your mother is currently in. Alzheimer's disease is a day-by-day disease, because every day can bring something new to the table. Your mother’s memory and agitation may be increased today (or even this week), but may be gone in a day or two.

However, if her agitation and paranoia seem to persist, you should consider contacting her physician for an evaluation. She may, for example, be suffering from an infection or have a pain that she cannot relay to you; the discomfort or pain may be disturbing enough to affect her behavior. A doctor’s examination could therefore help to rule out medical causes for her change in behavior.

If no medical condition is found to be the culprit, then anti-anxiety medications might be of help to reduce her agitation. You can also try to determine if there is an environmental reason for her change in behavior. Is there someone new living with you? Have there been any significant changes to her daily routine, such as when/where/what she eats, where she sleeps, where she goes, who she visits, etc.? Sometimes seemingly insignificant changes to the routine of a person suffering from Alzheimer’s disease can greatly impact his or her behavior. If the agitation continues, try to do a little detective work to determine whether something in her general environment may be disturbing her. Then, if possible, try to remove or limit these factors.

There often does not seem to be any rhyme or reason to which people are “remembered” and which are not by a person with Alzheimer's disease (AD). Generally, those individuals who have been known by the person with AD the longest, or those who lately are in most frequent contact with the person, tend to be remembered better, though this certainly is not always the case. For instance, an AD patient might not recognize his own wife but instead remember the boss he worked for 30 years prior.

It is very common for an Alzheimer's disease patient to confuse dreams and reality. Logic and reason are disturbed by the disease, so it can be difficult for a patient to distinguish between real life and their own imagination. This can compound symptoms of paranoia and anxiety, because a patient may truly believe that someone is out to harm or steal from him or her. A patient may also believe that a long-deceased person is still around, and the patient may even think they have had recent conversations with this deceased person. Due to the confusion caused by the disease, dementia patients often live in their own “reality.”

To answer your first question, yes it is possible to travel with an Alzheimer's disease patient in the early stages of the disease, though it can be challenging. Your sister may not be willing to make such a trip because she is aware of the demands it presents, and perhaps she is intimidated by such a venture. Although it may be an imposition on you, your sister may be more agreeable if you offer to drive or fly out to meet her and aide her in escorting your mother back to your home.

Also, think about this from your mother’s perspective. Changes can be scary and anxiety-ridden for cognitively impaired Alzheimer's disease patients. Travelling can be particularly frightening, because it often involves long vehicle trips, variations in mealtimes, disruptions to a person’s regular schedule, and sleeping in a different location. These may all seem trivial to you, but to someone who sometimes cannot remember a conversation that occurred five minutes earlier, it can be downright disturbing (and quite disorientating) to wake up in a strange bed in a strange room and not know where you are or how you got there.

Therefore, anything you can do to help prepare you mother for the upcoming trip would be helpful. Both you and your sister can mention the trip in advance (“I can’t wait to see you and Sissy when you come to visit”). Mark the trip on a calendar that your mother can see and be sure to point it out to her. About a week beforehand, you can start crossing off the days until the trip, and remind her that it will only be X number of days until then. Hopefully with all of that repetition your message will get through to your mother, so that it won’t be such a big a surprise or disruption when the trip actually happens.

During the trip, the key to minimizing anxiety and having things go as smoothly as possible is to be prepared. Have the route planned out in terms of where you (or they) will be stopping for breaks, and have reservations already in place if it is decided that an overnight stop at a hotel will be necessary. Have medications, prescriptions, important phone numbers, snacks, drinks and car-friendly activities readily accessible for the drive. For example, humorous audiobooks can often help to make the time pass quickly. Also be sure to have your mother’s room or accommodations fully ready before her arrival, so that if she is tired or overstimulated from the journey she can go right to bed. Don’t expect that she will want to have a big gathering or lots of interaction when she first arrives. Save the welcome party for after she has settled in, or better still, just keep gatherings to a minimum.

Finally, with respect to your desire for your mother to live with each of you for six months of the year, you and your sister need to keep your mother’s best interests in mind when planning her living arrangements. Predictable routines and environments are typically best for Alzheimer’s patients because without such predictability, patients can become easily disorientated and confused, which can lead to anxiety and other behavioral issues. It is wonderful that both you and your sister want to share responsibility for the care of your mother, but continually relocating her “home” may become a problem as her disease progresses and she becomes less able to adapt to change. Perhaps it seems overwhelming for either you or your sister to take on full responsibility for your mother’s care and this is why the joint-custody situation seems appealing. Even though it may appear sensible to consider share custody, it is not ideal for an Alzheimer’s disease patient.

The most practical arrangement would be that you and your sister are both involved in your mother’s care, but she lives with only one of you full-time. For example, if your mother lived at your sister’s home all the time, then you could assist in her care by providing non-judgmental moral support for your sister, providing some financial assistance, and/or by visiting regularly so as to provide respite care, thus allowing your sister to take much-needed breaks from her caregiving responsibilities. Occasional visits to your home might also be okay a few times a year, but you will need to gauge your mother’s reaction to these visits as to whether or not they cause her excessive confusion or anxiety.