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Caregiving Questions

Latest Questions and Answers
I am a full-time caregiver for my grandmother. She has had Alzheimer’s disease for about 10 years and is slowly progressing. She is now at the stage where she talks non-stop all day in her own language and is also very violent when getting dressed. I would like to know what to expect next. Will the violent outbursts calm down or get much worse? [ 03/30/10 ]

Alzheimer's disease (AD) is a progressive neurodegenerative disease, meaning that over time symptoms worsen and impairments increase. Your grandmother will probably have some good days and some bad days, but in general, her condition will unfortunately tend to worsen over successive months and years. However, how the disease affects any one patient is just as unique as the patient herself, and therefore it is impossible to say which behaviors your grandmother will or will not develop in the future.

Alzheimer's patients tend to have a short attention span, and boredom can translate into restlessness, agitation, wandering, and even violent behavior. Aggressive or argumentative behavior (verbal or physical) is one of the more disturbing and difficult behaviors in Alzheimer's disease. It is not advisable to argue or fight with an Alzheimer's patient because she could cause injury to you or herself.

Aggression can be lessened or prevented if you take some time to understand what may be causing your grandmother to become agitated, and then working to reduce these triggers. Aggressive behavior can result from a patient feeling anxious or fearful of something in their environment, such as something new or unknown or if the patient feels discomfort and cannot verbalize it. For example, your grandmother may have an infection, an ache or a sore, she may be hungry or thirsty, or she may have soiled herself and needs to be cleaned.

Your grandmother's physician should be consulted about the behavior to rule out possible physical ailments. There are some medications that may reduce aggressive behaviors, which may be recommended by her physician. A patient's environment—such as constant background TV or radio sound, outside traffic noise, household noise, etc.—can also have a significant impact on a patient's comfort. Eliminating or reducing such disturbances can sometimes help to reduce agitation as well as aggressive behavior. Finally, when your grandmother becomes angry or argumentative, try your best to redirect her attention to a new subject or activity.

We are currently caring for my 87-year-old father who is suffering from Alzheimer’s disease. Recently, his 14-year-old dog died, and we just keep telling him that she is at the veterinarian for fear that he might be devastated by the truth. He has only asked a few times concerning when his dog will come back home. What should we tell him? I am afraid that if we tell him the truth, he will re-live the pain repeatedly because he cannot remember much of what he is told. Any advice would be greatly appreciated. [ 03/28/10 ]

In this case, it might be best to tell him that his dog is gone, otherwise he will continually ask about her and you will have to continue a false story. You could try telling your father that his dog has passed on. If he presses you, keep the details of her death simple: an unfortunate accident, old age, etc. Emphasize that the dog died quickly and peacefully, that it was very sudden and unexpected to everyone, and that nothing could be done to prevent it. You may not want to say anything about the dog being put down, as this might imply that there was suffering or pain involved, which might cause him to feel guilt that he could not be there for the dog.

Whatever you decide to tell him, it is important to be aware of the possibility that your father may associate himself with the dog. This is one reason why inventing a story about the dog being given away, left at the veterinarian's office, or put down may not be appropriate. He may feel anxious or fearful that his own progressing disease may burden you and that you might decide to dispose of him (or forget about him) like the dog. Therefore, it is essential to reassure your father that he is loved, that he is not a burden, and that you will continue to provide him with good care no matter what.

My mother has dementia. She keeps crying and asking why she can't remember anything. How do we explain this to her? She was hospitalized recently and the trauma from this experience has made the dementia much worse. [ 03/26/10 ]

The best approach is usually the truth, or at least a simplified version of it. Often, what you tell a dementia patient about his or her condition depends on how far advanced the disease may be and their ultimate level of comprehension. If you do not feel that telling your mother she has dementia will help with the situation (or if you believe that she is too far advanced to fully comprehend what that means), then simply tell her that she has a memory impairment, that you are aware of the condition, and that you and her doctors are doing everything possible to help her and make sure she is taken care of properly. If she is still capable of writing, you can try giving her a notepad so that she can jot down things she wants to remember on a day-to-day basis. If it is people, places, and events that she is forgetting, you can try assembling a photo album containing labeled photographs of important people and things in her life. Go through the album with—several times if necessary. If she enjoys it or seems to benefit from seeing the pictures, let her keep it with her as an instant visual reminder—sort of like a security blanket.

Also, anxiety and depression are very common in dementia patients. Therefore, you may want to discuss this with her primary care physician to see if anti-depressant medications could be of any use in your mother's case.

My husband, who is 74, has been diagnosed with Alzheimer's disease that is in the moderate to severe range. I am his only caregiver, and when I come home he will often ask what my name is, where I live and what happened to the person he was with earlier. He often asks if there are other people in the house. He seems to recognize his son more than his daughter although he does not know their names. Are these normal symptoms? [ 03/24/10 ]

It is quite common for an Alzheimer's disease patient to have difficulty recognizing or remembering familiar faces and names, even when those people are family and close friends. There seems to be no rhyme or reason to it either. The Alzheimer's patient may not recognize his or her own grown child only to remember the name of a son's long-ago childhood friend.

Just keep in mind that all of this is normal and a part of the disease. Your husband does not do those things to annoy or upset you; he simply cannot help his behavior. Although it may be difficult at times, try to be patient and stay positive.

My mother is in a home and has been diagnosed with "Alzheimer's-like dementia." For the past year or so she keeps "losing" things and then begins searching for them. Often she will say that she has looked everywhere and becomes quite distressed thinking that someone has stolen the items. She will often call and inform me that she has found the item(s). What is the best way to deal with this problem? [ 03/17/10 ]

Accusations of thievery are fairly common in Alzheimer's patients. Because their short-term memory is impaired, patients often forget where they have placed items and believe that an item has been stolen when it cannot be found. Calmly reassure your mother that none of her items have been taken. She may be anxious or agitated about something completely unrelated to the items she has lost, and her behavior is a result of her anxiety. She may, for example, not be adjusted to her new environment. Or she may feel anxious about being "alone" in a care facility or being a burden to you. She needs your reassurance that both she and her possessions are safe, that she is not a burden, and that both you and the home will take good care of her in the future. If she becomes insistent, do not argue with her about the items as this will only cause her to become more agitated. Instead, you can try to address the underlying emotion and calmly redirect her attention to a new topic. Sometimes an empathetic approach will help to reduce her anxiety by shifting her attention to a more calming subject.

My mother is 53 and was diagnosed with Alzheimer’s disease about eight years ago. My concern is that she has been losing a lot of weight even though her eating habits have not changed. We have to mash everything so that she can swallow it properly, however. [ 03/15/10 ]

It is not uncommon for Alzheimer's disease patients to lose weight in general, particularly if they lose interest in food and eating. I would guess that your mother's overall physical activity level has lessened as a result of the disease, and therefore her appetite may have naturally decreased in response to her body's reduced need for energy. If, however, you believe your mother has relatively the same caloric intake as she has always had but is still losing weight, then it may be best to speak to her doctor. The doctor may suggest nutritional supplements, such as liquid supplemental nutrition drinks which would be easy for your mother to swallow. The doctor may also want to evaluate your mother to rule out if another medical condition (besides the dementia) may be causing her weight loss. Alternatively, her doctor may refer you and your mother to a registered dietician who specializes in nutrition for the elderly. The dietician can help to assess your mother's condition and diet and can provide suggestions for her specific needs.

In the meantime, continue to serve your mother nutritious meals—mashing the food first makes no difference nutritionally speaking, and if it helps her to swallow her food, all the more reason to do it. You can also try using more sauces and gravies, which can help “drier” foods to be swallowed easier. However, unless you prepare your own sauces and gravies, be sure to read the nutrition labels on commercially-prepared ones as they can often be loaded with high levels of sodium and/or trans-fats.

My mother has Alzheimer’s disease and does not talk or walk, and has lost a great deal of weight. She lies in the bed and keeps her eyes closed all day, and has recently had two seizures that have occurred in the early hours of the morning. How long will she continue at this stage of the disease? [ 03/12/10 ]

Patients in the end stages of Alzheimer's disease often decrease their food intake, lose weight, decrease (or stop) physical activity and become bedridden, and generally become non-communicative. How long a person continues in this stage really depends on whether they continue to eat and drink. Once your mother reaches a point when she stops eating and drinking, and assuming she does not have a living will, then unless measures are taken to ensure she is obtaining nutrients and fluid (such as by hand-feeding if possible or—if it is her wish or your family's decision—a feeding tube), it would not take long before dehydration would cause eventual death.

My husband, who has had Alzheimer’s disease for 5 years, has a maddening habit of whistling constantly from the time that he gets up until he falls asleep at night. When I ask him if he knows that he is whistling, he says that he does. I've tried to drown the noise out with music and sometimes gently ask him to stop, but he only stops whistling for a few minutes. Do you think it would be a good idea to ask him to chew gum so that he wouldn’t whistle? Is there any end to this maddening noise? [ 03/10/10 ]

Constant noise-making, such as whistling, humming, singing, chattering, or muttering, is not uncommon in patients suffering from Alzheimer's disease and other types of dementia. As the disease progresses, it is likely your husband will eventually stop this behavior, possibly to be replaced by another such symptom. In the meantime, try to stay tolerant and remember that he would not constantly whistle if he could control his behavior better. Although it may seem maddening to you now, there will come a time when you will appreciate your husband's ability to communicate—even if it is only by whistling.

Chewing gum could help as it might keep his mouth distracted. Just make sure that he does not have any teeth or jaw problems that could be aggravated by the constant chewing action, or any swallowing difficulties such that the gum could present a choking hazard. Also be sure to give him sugar-free gum.

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Disclaimer: The information provided here is a public service of the BrightFocus Foundation and should not in any way substitute for the advice of a qualified healthcare professional; it is not intended to constitute medical advice. Please consult your physician for personalized medical advice. BrightFocus Foundation does not endorse any medical product or therapy. All medications and supplements should only be taken under medical supervision. Also, although we make every effort to keep the medical information on our website updated, we cannot guarantee that the posted information reflects the most up-to-date research.

Some of the content in this section is adapted from other sources, which are clearly identified within each individual item of information.

Last Review: 04/29/13

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