Caregiving Questions

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.

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.

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.

Alzheimer's disease can cause a person to have decreased inhibitions for inappropriate behaviors, or else to be insensitive to the feelings or needs of others. The result is rude or mean behavior, which as you have noted, is often embarrassing to the caregiver. Your father simply can no longer recognize what is socially appropriate, and therefore does not see this behavior as a problem.

It is also possible that his ability to be socially sensitive is only slightly impaired. In this scenario, he says those rude things to get a rise out of you, as a way of getting attention. Similar to a young child, sometimes the cognitively-impaired dementia patient craves any attention, whether it is positive or negative, and will act out to get the attention they want.

Regardless of the reason, your best course of action is to try to ignore his comments as much as possible. Quickly dismiss his remarks and change the subject. Or warn him that if he continues to make such comments, you will leave. However, be prepared to follow through on your threat, even if you have to leave five minutes into your visit. You can simply leave the room for several minutes or leave the facility altogether and visit him another day. If your father makes the remarks to get a response from you, the “game” will soon no longer be fun and the behavior should lessen. If, however, he truly has a total loss of sensitivity to the feelings of others, then it may be some time before this behavior subsides. Just try to ignore it and remember it's the disease talking, not your dad.

Your reaction of not wanting to be a burden upon your mate is completely normal and very common among people diagnosed with Alzheimer's disease. But it does not have to be an all-or-nothing decision.

Right now, having someone in your life who provides love and happiness is invaluable for your mental and emotional health. You say that you have the means to provide for yourself, which is great. Use this to your advantage in the situation with your loved one. While you are still in good health, have your future care decisions planned out with an attorney who specializes in dementia issues. Get all of your legal documents in order now.

Make a plan now for your desires on how you would like to be provided for in the future: Is an assisted living facility an option you would consider now or later? At what point will you want to be placed in a care facility? Which care facility will you want to be in? Making these decisions now can save much aggravation in the future. Even if you feel that you do not yet need it, arrange for a professional caregiver to come to your home once or twice a week to check in on you.

The caregiver can help make sure you are able to perform daily activities, stock up on groceries, aide in making sure bills get paid, perform minor household duties, and monitor your overall health and well-being. Again, you may not feel it is necessary at this point, but the sooner you get used to having such a caregiving aide in your life, the easier the transition will be when you actually require such help.

If you have all of your future care plans laid out, and if your care will be primarily the responsibility of professional aides and/or care facilities, then you really would not be a “burden” to your loved one.

Whether you end the relationship now or in the future, she will likely still be concerned and grieve for you regardless. Talk to her and find out her feelings. She may have already decided that she wants to stay by your side until the end, and to cut her out of the picture early, though of noble intentions, may be unfair to her. Instead, let her decide for herself how much she can take, and let her know that you will respect any decision she makes.

Taking care of a loved one with Alzheimer's disease can definitely try your patience at times. Keep in mind that your mother cannot always control her behavior; remind yourself that what she does is not purposely meant to annoy you.

Most likely, she follows you because she is confused and feels very insecure—she may feel anxious and vulnerable when she cannot see you. Patients with Alzheimer's disease often live in the now. They sometimes can't remember what happened only moments earlier (such as where they were or what they were doing), and this is can be a source of great confusion and anxiety. Therefore, your mother's shadowing behavior may simply be an attempt to provide a bit of continuity in her life, a sort of visual anchor. She knows you, she trusts you, and you make her feel safe. So if you start feeling annoyed again, try to remember that by letting her follow you around, you may very well be providing her with a source of comfort.

As for the wandering, you may rest easier if you were to invest in some locks for the doors and windows in your home. If your mother wanders during the day, it is possible she may sometime try to do so when you are sleeping, which could be dangerous if she were to leave the home. Therefore, make sure the locks you install lock from the inside and require a key or code (such as with a keypad), so that your mother will not be able to leave the house unexpectedly.

Furthermore, it is certainly possible to hire a part-time caregiver or respite care worker to come to your home and help with the care of your mother. Your mother's doctor may have some suggestions on finding a suitable caregiver, or you can contact the Administration on Aging (AoA) in your state. This agency, part of the U.S. Department of Health and Human Services, is one of the nation's largest providers of home- and community-based care for older persons and their caregivers. Their phone number is (202) 619-0724, or you can access their website at: www.aoa.gov/.

Finally, information on professional caregiving services available in your area may also potentially be obtained through local caregiver support groups. You can search for a support group in your area at www.brightfocus.org/adsupportgroup.

Many facilities do encourage a “buddy system,” whereby each new resident is paired with a companion resident for meals and activities. This helps to ease the transition into a new living environment and can aide in lessening anxiety and making a new resident feel more at home sooner. It would certainly be something to ask about when you are choosing a care facility for your loved one.

A professional, compassionate facility should be willing to at least try a buddy system for your loved one, even if they do not currently have such a system in place. Alternatively, some facilities may allow a family member or friend to stay with the incoming resident at the facility for a few days until the resident becomes settled in. This would be something else to inquire about when interviewing potential care facilities, assuming of course that this arrangement is something you are willing and able to do.