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Caregiving Questions

Latest Questions and Answers
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.

I care for a 66-year-old woman with early Alzheimer’s and a lot of new issues have arisen lately. For example, she threw herself on the floor and had a tantrum because she was unable to purchase a computer. She seems to remember that she wants a computer on a daily basis, but cannot understand why she does not have one. Please advise me on how to handle this situation when we are in public. [ 03/03/10 ]

Regardless of whether you are in public or private, the best way to handle one of these situations is to try to re-focus the woman's attention on something else that is enjoyable or calming. Easier said than done, perhaps, but it can be done. Even though it may be difficult, try to remain calm and do not raise your voice or shout at her. Also, avoid arguing with her about whether or not she can purchase a computer, as this will only upset her and possibly provoke a tantrum. Try to get her mind focused on another topic when she starts talking about the computer. If you are in public when she starts becoming upset, try to get her to a quiet place away from noisy crowds as quickly as is reasonably possible until such time as she has calmed down. When you leave home, always have some distractions on hand, such as an MP3 player filled with her favorite mellow music, a magazine she enjoys looking at, or a favorite snack, etc.

Her continual quest for a computer may underlie another need or desire as well. Perhaps she feels that if she had a computer, she would be better able to contact friends or family members, or else she would feel more like a part of normal society because “everyone” has a computer. If prior to the development of Alzheimer's her job was one that involved computers, then perhaps she feels disconnected from the world that she once knew, or else she might feel that having a computer will help her to feel useful and independent again. So the next time she starts asking to buy a computer, try to gently steer the conversation to finding out what the motivation behind wanting the computer might be (or even if there is a reason). If you can address the underlying emotion she may be experiencing (fear of being alone; loss of self-worth or independence; feelings of inadequacy or uselessness), then the persistent asking and the tantrums may dissipate as well.

What can you do to prevent a patient from removing her protective undergarments during the night and creating a mess? [ 03/01/10 ]

It may be possible to discourage this behavior with the use of special clothing designed for Alzheimer's disease and dementia patients. Anti-strip jumpsuits and pajamas have back zipper closures, and therefore the clothes cannot be removed by the wearer. If the patient cannot remove her pajamas, then she cannot access her undergarments to remove those either. Some websites that carry this type of clothing include: Silvert's, Adaptive Clothing, and Nurnia. Or just search for “Alzheimer anti-strip suit” in your web browser to find other sites and/or related products.

My mother has several signs of Alzheimer’s disease. Despite several falls she refuses to use a walker, wear an alert pendant or accept family help. What steps can we take to allow my mother to remain living in her home? [ 02/26/10 ]

One of the more difficult aspects of dealing with a loved one who has Alzheimer's disease (AD) is getting them to accept the fact that they need some additional assistance in their lives. If your mother is willing to visit a doctor, try scheduling and appointment and discuss these things with the physician separate from your mother. A thorough examination by a doctor could also help to diagnose whether or not your mother definitely has AD. If her doctor suspects probable AD, then he can start her on appropriate medications which can help to slow the progression of the disease. The doctor can also advise her that she will need a bit of help in her home, and that this help will come in the form of a caregiver. Sometimes patients accept hearing such news from an authority figure (such as a doctor) better than a family member.

Your mother's refusal to accept her condition is perfectly normal, and merely reflects her desire to remain independent. If she is still mostly able to care for herself, then you can help her by visiting or checking up on her at least daily, offering to help runs errands with her, reminding her of appointments, making sure her bills are paid on time, grocery shopping with (or for) her, and safeguarding her home. For example, you can remove or tack down any rugs that could cause her to trip, remove clutter in walkways and stairwells, install safety rails and non-slip mats in the bathtub or shower, install nightlights in hallways and/or bathrooms, put lights on timers in case she has a habit of forgetting to turn them off, etc.

And although the conversation will be challenging, you need to discuss this matter with your mother and other family members who may be involved in her care sooner rather than later. Your mother must realize that, while you will help her to remain in her own home and independent for as long as is reasonable, there will come a point when she will simply require more assistance. At this point, a hired carergiver may be necessary, or she will have to move in with other family members or move to an assisted living facility. If you discuss this with her now, then it may help to avoid painful surprises later on. Just remind her that whatever happens, you only want what is best for her well-being.

I take Ambien CR for a sleeping problem, which started after five abdominal surgeries that I had during a period of 18 months. I find myself tired all day everyday and wonder if Ambien is interfering with my REM sleep. My memory and reactions to things are poor and would like to know what is wrong with me. I have been a full-time caretaker of my mother, who has Alzheimer’s disease. I know that depression is a possible cause of my symptoms, but I am more concerned about my REM sleep. Is there research concerning Ambien’s affect on REM sleep? [ 02/24/10 ]

Several studies on the effects of Ambien on the different stages of sleep have found that there is a tendency toward reduced REM sleep and increased deeper stages of non-REM sleep. But whether this shift in sleep stages has any bearing on your memory is another question which is not easily answered. The role that sleep plays in learning and memory is still being unraveled. Different types of sleep (REM, non-REM) have been found to be beneficial for consolidating different types of learning, so the absence of REM sleep may be detrimental to one type of memory or learning but may have no impact upon another type of memory that requires the deeper non-REM sleep stages.

More likely than not, with all of your caregiving demands and surgical ordeals, you are probably overworked and over-stressed, which can certainly affect your sleep. Try talking to your doctor about adjusting or changing your sleep medication. Please also talk about exercise and other strategies to manage stress and depression during your visit—these can go a long way toward encouraging good sleep without any of the side-effects caused by sleep aide drugs.

My father is 57 and has just been diagnosed with Alzheimer’s disease. Although it has been evident for years that something is wrong, he is mostly in denial. His wife is younger and has three small children. He is becoming increasingly agitated and I constantly worry about his safety as well as the well-being of the children. He is not sleeping and will get up and leave the house without telling anyone. He does come home, but if he does not take his cell phone, there is no way to contact him. I need some guidance on how to handle each new situation that comes up without hurting his dignity. I personally do not feel it is safe for him to drive but his doctors have not recommended that he give up driving. This is all so new and I am the only daughter. I am 35, but in his eyes I am still a little girl and it is difficult to tell him not to drive or go anywhere by himself. However, as his only child, I am sure that I will have a huge part in his caregiving in the future. [ 02/16/10 ]

You are right to be concerned about both your father's and his family's well-being. Even though it may be emotionally difficult, it is usually best if all of you—you, your father and his wife—sit down together and discuss his diagnosis and what it means for your family and the future. You all need to have a realistic idea about how caregiving responsibilities will be divided, financially and practically, so that hopefully there will not be any unpleasant surprises down the road. More than likely, this will be a discussion that needs to be periodically revisited as time goes on and new issues arise. What you decide today may change in the future, but that does not mean that you should not at least have an overall plan for your father's care. He may have strong opinions against, for example, having a home health aide or respite caregiver help with his care at home. But these types of arrangements may be necessary if his wife has her hands full with other home childcare responsibilities, and therefore it is best to try to persuade him now to keep an open mind about different caregiving options for the future. Now is also the time to make sure that your father's legal and financial documents—such as his will, living will, titles and deeds, etc.—are current and in order.

As for your father's wandering behavior and his driving, remind your father that your concern is not intended to cause him indignation or restrict his freedom, but rather your concerns are for his safety and the safety of other motorists. You can read more about the subject of driving and about wandering behavior on our website.

In the meantime, you may want to consider joining an Alzheimer's support group. You can search for Alzheimer's caregiver support groups in your area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in "Helpful Organizations."

Are there any Medicaid and Medicare benefits for caregivers of individuals with Alzheimer's disease? [ 02/15/10 ]

Although Medicaid and Medicare sound as if they are related, they are actually separate programs and have different eligibility requirements. Medicaid, for example, is a state-run program designed to help lower-income individuals, whereas Medicare is a federal program for persons over the age of 65 receiving social security benefits.

Depending on what program(s) the Alzheimer patient qualifies, the caregiver may be able to receive benefits in the way of assistance with caregiving responsibilities. For example, Medicare can cover some of the expenses related to the care of a patient having Alzheimer's disease. For more caregiver information, please visit the Medicare website. There are also several agencies under the Helpful Organizations heading that you can contact and that can help you to identify sources of aide appropriate for your situation.

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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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