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Caregiving Questions

Latest Questions and Answers
We have an Alzheimer's patient who is 96 years old. He gets up several times each night and roams with his walker. We get no sleep; however, he can sleep throughout the day. His doctor has changed his medications several times but nothing is helping him. We have tried Ambien CR, Depakote and Benadryl. Do you have any suggestions? [ 05/26/10 ]

For reasons not fully understood, Alzheimer's disease frequently disrupts a patient's circadian rhythm (our internal clock that helps regulate day-night awareness/activity), which then results in patients being awake at night and sleeping during the day. Regular exposure to sunlight can help to improve an Alzheimer's patient's overall mood and – when combined with calming, dim lighting in the evening – can help to keep a patient's circadian clock on track.

Several studies also seem to indicate that the use of bright lighting in the patient's home environment (or care facility) improves sleep quality in dementia patients, presumably by normalizing the day-night cycle. For example, bright lighting improved facility patients' sleep patterns (longer nighttime sleep with fewer nocturnal sleep interruptions), reduced patients' agitation, and lessened the incidence of depression.

Additionally, physical activity during the day can help to improve or regulate nighttime sleep. So try to encourage the patient to participate in some sort of physical exercise every day.

If someone has Alzheimer’s disease, should they be informed of their medical condition? Also, should I tell this person about events that they participated in years ago? [ 05/13/10 ]

It can be very difficult to speak openly with someone who is suffering from Alzheimer's disease. However, if this diagnosis has been confirmed by a doctor—rather than just something you suspect—then I believe you have a moral obligation to tell the person. If you prefer not to be the bearer of bad news, ask his or her doctor to do it. The patient will have to come to terms with this information in his or her own time, and it will undoubtedly be difficult. You can be there to give the patient the support he or she will need. Our organization provides information on the progression of Alzheimer's disease, such as “Alzheimer's Symptoms and Stages" which may be useful in talking with this person.

Unless it is a subject that clearly upsets or agitates the patient, there should be no harm in talking about past events. In fact, Alzheimer's disease often attacks short-term memory and spares a patient's long term memory, such that they can remember the distant past but have trouble remembering what was done just 5 minutes beforehand. So the patient may be able to more easily engage in conversations about the past than in current topics.

My siblings and I need to care for our mom, but she has a spouse. Could you tell me who has the right to make decisions for her? [ 05/12/10 ]

In most circumstances, the spouse takes precedence over other relatives (children, siblings, etc.) in the right to make medical decisions should the patient become incapacitated. Depending on the state, however, this does not always hold true for same-sex marriages.

Unless her spouse strongly objects, it is possible that you or one of your siblings could obtain a durable power of attorney for health care of your mother, which would give you the legal right to make medical decisions on your mother's behalf. Please consult an attorney specializing in elder issues for more information. For example, you might consider the following sources:

ElderLawAnswers.com: This organization supports seniors, their families and their attorneys in achieving their goals by providing information concerning crucial legal issues facing seniors and a network of highly qualified elder law attorneys nationwide. You can access their website at: www.ElderLawAnswers.com.

Administration on Aging: 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. AoA also provides some legal assistance. Their phone number is (202) 619-0724. You can access their website at: www.aoa.gov/. The AoA website can also lead you to state agencies.

My mother, who is in the late stage of Alzheimer’s disease, currently lives in a nursing home. She is so sad and wants to come live with me. My income is less than $20,000 per year and my siblings don’t help me. What should I do? I am concerned about making the wrong the decision. [ 05/11/10 ]

Taking full charge of an Alzheimer's disease patient's care can be a challenge, both emotionally and financially. Many caregivers find themselves overwhelmed by the responsibility, particularly when the patient is in the later stages of the disease when more complications and difficult behaviors are likely to arise. There is no guarantee that your mother will be any happier if she were to come live with you. If she is in the later stages of the disease, she may receive more thorough care at a nursing home with trained staff then at home with just you as the sole caregiver. Taking care of an advanced stage Alzheimer's patient is a full-time job in itself, which means you would either have to take a leave of absence from your current job or find someone to watch your mother while you are working—both of which can obviously be costly options.

What matters here most is your mother's overall health, safety and well-being. A skilled nursing facility should be able to provide your mother with a safe environment and proper medical care. This is not to say that you couldn't also provide excellent care for your mother, but only that it will be more difficult for you as a single caregiver to do this than an entire staff at a nursing home can.

If possible, try to determine if there is specific reason for your mother's unhappiness. Is it that she feels lonely or does she just not like some aspect of the facility? Try to visit her as often as you can and/or stay for longer visits when you do visit. Observe the staff and other patients at your visits. Does the staff seem genuinely caring in their interactions with the patients? Are your mother's needs met in a timely and compassionate manner? Does the facility make any attempt to provide activities or social stimulation for the patients where appropriate? Is there anyone who routinely cares for your mother whom you can talk to about her behavior when you are not there? Perhaps it is just a matter of modifying some aspects of her care that will make her happier at the facility.

If you do decide to care for your mother at home, you may be eligible to receive some financial assistance for her care. Depending on what program(s) the Alzheimer patient qualifies (Medicare or Medicaid), 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.

Additionally, bear in mind that Alzheimer's disease patients are often prone to developing depression. You may therefore also want to speak to your mother's physician about this, to determine if her unhappiness is in fact caused by mild depression. If so, antidepressant medications may be of help.

I worry about my uncle's health. He is 53 years old and is having problems with his memory. Actually, he has had issues with forgetfulness for a long time, but it has become more serious recently. When his memory is impacted, he cannot focus on his work and he becomes clueless. Are these symptoms of Alzheimer’s disease? If so, what should I do? Is it too late to make any difference? [ 05/10/10 ]

Typically, earlier Alzheimer's symptoms include changes in personality and behavior, mood swings, impaired judgment, and difficulty communicating and understanding written material in addition to memory loss. Memory problems can arise from a number of medical and psychological conditions besides Alzheimer's disease. For example, memory impairments can be caused by stress, depression, brain injury, stroke, interactions between medications (or side effects from a new drug), viral infections, hypothyroidism (failure to produce sufficient thyroid hormones), and vitamin B12 deficiency. Many of these conditions can be treated, so it would be in your uncle's best interest to visit his primary care physician for a thorough examination. Whatever you can do to get your uncle to see his doctor would be the best help you can offer your uncle at the moment.

The sooner your uncle has a medical evaluation, the sooner a diagnosis can be had and appropriate treatment can be started. If the doctors determine that he does in fact have Alzheimer's disease, many of the Alzheimer's disease medications, when taken early on, may help to slow the progression of cognitive impairment.

It seems as though my wife is over-medicated in the home where she is now staying. I cared for her myself for several months prior to placing her in a facility. It was difficult but I could still communicate with her at that point. Now, communication does not seem possible. I would like to bring my wife home regardless of cost, but would like to know if you would recommend leaving her in a facility for those afflicted with Alzheimer’s disease or bringing her home with full care. [ 04/27/10 ]

Because your wife's condition has deteriorated since the time that you were caring for her, and because you have stated that it was challenging even then, it may be best to let her remain in the facility and allow the trained staff to care for her. As the disease progresses, her condition will gradually worsen. Caring for her will become more and more difficult with time.

Continue to visit her as much as possible even if you do not feel as if she notices. Talk to her and tell her stories—talk about the things she used to love most (a particular pet, hobby, a friend, a vacation spot, etc.) You can bring in her favorite music (or any calming music) and play it for her, or better still sing to her. Or you can look at old photo albums together. She may enjoy just looking at the pictures as you describe who they are and what was happening at the time. Remember also that there is more than just verbal communication. You can use touch as a nonverbal means of communication. You can gently brush her hair, massage her shoulders or feet, or simply hold her hand and stroke her arm. She may not respond to you but she will be able to sense these things. In fact, massage and gentle touch can aid in reducing stress and anxiety in Alzheimer's disease patients.

Finally, you might consider speaking to the staff about her medications. Review them with her doctor and ask what each medication is, why it is necessary, and if it is possible to taper one or more of the medications to a lower dose. You have a right to know what they are prescribing to your wife, and to seek a second opinion on her drug regimen. Just keep in mind that in some cases, although it may seem that medications are to blame for a change in a patient's condition, the drugs are in fact helping the patient. Alzheimer's disease patients can be fine one week and then their condition may quite suddenly deteriorate. In this case, the medications may actually be helping to stabilize the disease, and removal or reduction of one or more of the medications may cause the patient to get worse. Therefore, it always best to talk to a doctor about the medications to understand what they are and why they are being prescribed.

My husband has recently been diagnosed with middle-stage Alzheimer's disease. I am having a very difficult time getting him to move in the morning. When I tell him it is time to get up, wash, brush his teeth and shave, he will say, “OK,” and then either stay in bed until I rouse him again or he will get up and sit in a chair until I prod him. He frequently gets annoyed with me for urging him to get up and move. What is the best way to motivate him? [ 04/25/10 ]

Sometimes it is difficult for Alzheimer's disease patients to understand the “big picture,” so you have to break it down for them into easy-to-understand chunks. For example, telling your husband to “get up and get ready” may be completely incomprehensible to him. He may not understand what getting up and getting ready means, so he simply stays put in bed. Try to break up the tasks for him and be very clear and specific about what you ask him to do. Instead of saying “get ready,” say “here is a damp washcloth and soap. Put some soap on the washcloth and use it to wash yourself, and then rinse the washcloth and yourself.” Demonstrate it for him and offer your assistance as necessary.

In general, motivating a patient with Alzheimer's disease is more about gaining his cooperation rather than forcing him to do a task. Such techniques can include:

  • Asking him to try to do something rather than telling him to do it.
  • Keeping instructions simple and clear. Avoid lengthy explanations.
  • Offering simple choices. For example, instead of asking “What do you want to do next?” ask “Do you want to sit at the table or walk to the living room?”
  • Breaking tasks into small steps. Instead of saying “Get out of bed” say “Swing your legs over the side of the bed, put your feet on the floor, and stand up.”
  • Maintaining a pleasant and calm tone of voice. Sometimes how you say things is just as important as what you say.
  • Asking him to help you with a task. Everyone likes to feel needed, so if he thinks that he can be of assistance to you, you may find he is more willing to cooperate. Don't forget to praise him for his efforts.
  • Allowing him to make some mistakes. It does not matter if his socks do not match or if his hair isn't brushed nicely—so long as his shoes are on the correct feet and his pants aren't on backward, the other things can be ignored. Do not belittle him if he gets something wrong, just try to ignore it (if it's not very important) or suggest trying to do it another way (if it is something significant).
  • If all else fails, leave him alone and try again later using a different approach. It will give you an opportunity to calm down and reassess the situation if you are feeling frustrated. Don't continue to push him if the technique you are using is not working.

My mother is in stage 6 of Alzheimer’s disease and mainly wants to sleep most of the time. Lately, she has no real interest in eating, and no longer seems to know us when we visit her. She needs help with most of her daily activities; however, sometimes she is able to get up and walk around the facility that she lives in. Recently, she has taken several serious falls. Is she losing her ability to walk and fading into stage 7? Is there any way to tell how much longer this nasty disease will last? [ 04/23/10 ]

The rate at which Alzheimer's disease progresses and how long it lasts is unique for each and every patient, so there really is no way to predict how much longer your mother will have. She could, for example, remain at her current stage for months or even years, or she could rapidly succumb to the disease and become bedridden within the next few weeks.

On average, patients with Alzheimer's disease live for 8 to 10 years after diagnosis. However, this terminal disease can last for as long as 20 years.

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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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