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Caregiving Questions

Latest Questions and Answers
My wife has had Alzheimer’s disease for over 10 years, and I can no longer understand her words. She has great difficulty speaking when she is trying to tell me something; however, she can speak more clearly when she is angry. She also becomes quite violent occasionally and demands that I leave the house. Xanax calms her down in about one hour. What stage of the disease is indicated based on the information provided? [ 12/07/09 ]

It is difficult to say just based on the above information alone, but taking into account the length of time she has had the disease and her current behaviors, a good estimate would be that your wife is in mid- to late-stage 2 of Alzheimer's disease.

My 84-year-old father was diagnosed with the beginning stages of Alzheimer’s disease. We (his daughters) have taken steps suggested by the Department of Aging to provide him with in-home care. However, he argues with us about these positive steps and thinks we are setting him up. His companion, who lives in the same apartment building, does everything for him (even his thinking) and is spouting out negative comments on what we are “doing” to my dad. How do we let his companion know in a calm manner that she needs to stick behind us concerning this transition? If she doesn't modify her behavior, what major actions do we need to take to help resolve this issue? Thank you! [ 12/04/09 ]

It is unfortunate that your father's companion is working against your good efforts, but is not uncommon for this situation to arise in the care of Alzheimer's disease patients. The confusion caused by dementia can make patients misunderstand people's intentions, and therefore they may believe that someone is trying to hurt or steal from them when in fact that person is trying to help them. Your father's companion may be playing into his fears and paranoia—fanning the flames in a way. In this respect, her presence may be hurting more so than helping your father's well-being.

The first approach you should try is to sit down with this lady (preferably with your father present) and thank her for the generous assistance she has already offered with your father's care, but explain to her the facts about his disease and why it is essential that she cooperates with you and your sisters. Tell her your plans and motives, and remind her that you are only looking out for your father's best interests. Try to keep the conversation positive and do not try to insult her or her actions. You want to get her on your “side.” To cast her in a negative light may only serve to create a further rift in your relationship with your father, fostering an “us against them” mentality. Therefore, if you go into the discussion with a combative attitude, you may be setting yourself up for failure.

Remember that you are all on the same team – emphasize that you all want what is best for your father. You will have to convince your father just as much as you will have to convince his companion. Listen to her as well. Perhaps she has some good ideas that you can take into consideration. For example, it is likely that your father tells her things about his health or in-home care that he does not feel comfortable telling you. This information could be invaluable for optimizing his caregiving requirements and should not be dismissed.

If all attempts at respectful conversation fail and if the companion still will not listen to your reasoning, you could consider the drastic measure of moving your father into an assisted living facility. Will this solve the problem? Maybe in the long run, but it could also create a whole host of other issues in the meantime. Therefore, the less drastic approach may be better for now.

I provide home care for my wife. Can I obtain tax deductions for supplies and the cost of an aide who comes to our home each week? Thanks! [ 11/20/09 ]

So long as you are paying the appropriate taxes for the aide's employment (either through an agency or directly as an employer by withholding for state, local, and federal taxes as well as for social security and Medicare), and so long as the aide is providing nursing care (such as those services associated with caring for your wife's condition) then the cost of a home health aide is deductible. The aide does not have to be a qualified nurse, just so long as his or her services are consistent with such nursing care. For example, services such as giving medications, providing assistance with bathing, grooming or feeding, or changing dressings would qualify as nursing services. Housekeeping activities would not qualify. You should keep documentation on the nursing activities performed by the aide (such as types of activities performed and approximate amounts of time spent performing these activities) as well as any medically-necessary supplies required for care of your wife.

As for supplies, if you provide meals for the aide, his or her portion of the cost of the food is deductible. Other medical supplies such as prescribed medications, bandages or other wound dressings, wheelchairs necessary for disability, and some other medically-related supplies are deductible as well.

You should consult with a tax accountant for final verification of the information presented here as well as for more detailed instructions.

My wife has Alzheimer’s disease and we have to put her in a rest home. However, we are having trouble with the nursing home manager. I tried to talk to the director, but she ran out, would not talk to me and left me in her office alone. I would appreciate if you can give any advice on how to deal with a nursing home director who will not listen to my concerns. [ 11/18/09 ]

It is unusual for the director of a nursing facility to run out of her office and leave you alone without any explanation, but it could happen. Perhaps there was an emergency and she did not have time to explain. Regardless, try scheduling another appointment with the director to discuss your wife's situation. You can inform the director that you were both confused and offended by her abrupt departure, and would greatly appreciate an explanation and an apology. Again state that you are having trouble dealing with the nursing home manager and are concerned for your wife's well-being. I would strongly suggest that you bring along a trusted family member or close friend who is aware of the whole situation and who can act as your advocate (and witness) when you speak to the director. You can also try speaking to the staff in charge of your wife's care. Perhaps they will have some insight on how to best relay your concerns to the director, or they may even be able to speak on your behalf. If your concerns continue to be disregarded by the facility, then you should consider looking for an alternative care facility for your wife.

My mother has dementia. She has started to use the phrase, "Help me" all the time. We ask her questions to see if we can figure out what she wants or needs; however, we really don't get that much of a response back from her. Within minutes she is again saying, "Help me." Why does she say this all the time? Can you provide some information on this behavior? Thank you! [ 11/18/09 ]

It is not uncommon for an Alzheimer's disease patient to repeatedly ask the same question or repeat the same phrase over and over. The repetition is a function of the disease; your mother is not purposely trying to annoy you. Alzheimer's disease impairs a patient's short-term memory, so a patient effectively forgets that the same question or request has already been asked and answered. Just remember that your mother's forgetfulness is just as confusing and frustrating to her as it is to you.

In some cases, a patient may be physically bothered by something but cannot properly communicate what is wrong. Try first to rule out all the obvious culprits: she may be too hot or too cold, she may have a wound or sore or be sitting on something uncomfortable, she may have an ache or pain that is not outwardly noticeable (a toothache, joint ache, urinary tract infection, etc.), she may have to use the toilet or have indigestion, or she may simply be hungry, thirsty or bored. Talk to her primary care physician about this. If she has not had a physical in a while, you may want to consider scheduling an exam so that physical ailments can be ruled out.

In most cases, however, repetitive requests usually stem from a particular fear or anxiety. For example, if the patient repeatedly asks you when a doctor's appointment is scheduled, it may be because she is anxious about going to see the doctor. So when you talk to her, try to address the underlying emotion in the question ("I'll be right there with you the whole time at the doctor's office.") Since your mother repeatedly requests that you help her, it may be because she feels insecure or scared, that she cannot understand what is going on and is afraid of what is happening to her. She may literally feel helpless in a sense, and does not know how else to express herself.

In this case, all you can do is reassure her that you are helping her and then try to shift her attention to a new subject or activity. When possible, try having her “help” you with some activity (naming long lost relatives in old photo albums, folding clothes, mixing dough, sorting items into piles, etc.) This can provide her with a sense of self-worth and may even reduce some of her anxiety. Because of the nature of Alzheimer's disease, your mother will require continual calm reassurance that everything is fine, that you love her, and that you will continue to care for her.

Anything you can do to help reduce your mother's anxiety and uncertainty may also help to reduce the repetitive requests. For example, you can use notes, signs, or even a written daily schedule on a wall chart to help remind her when it is time for meals, bathing, activities, bedtime, and so on. And if you are trying to get her to do something and she becomes agitated, be patient and explain what you want her to do with simple, straightforward instructions.

My husband has great difficulty expressing himself and it is impossible to have a conversation with him. I can usually figure out what he is trying to say but he gets upset if I don't understand him. Also, if I didn't prepare his meals, it seems as though he wouldn't bother to eat. In addition, he has trouble dressing himself. He will pull a shirt over his feet or put his head into sleeve. He also does not recognize his clothes from mine no matter how different they are. Will this get worse and if so what can I expect? [ 11/18/09 ]

Alzheimer's disease (AD) is a progressive neurodegenerative disease, meaning that over time symptoms worsen and impairments increase. Your husband will probably have some good days and some bad days, but in general, his condition will unfortunately get worse over successive months and years.

Taking care of a loved one with AD can be challenging, so it is important that you find some support to help you get through the tough times. If you have not already done so, you may want to consider joining a caregiver support group. You can search for Alzheimer's disease caregiver and patient support groups in your area by visiting our Resources section, such as under the Caregiving and Caregiver Support heading in Helpful Organizations. Also, don't be afraid to ask family and friends for help. Additionally, you may want to consider hiring a caregiver aide, even if it for only a few hours each week. Respite aide such as this can be invaluable because it will allow you to take short breaks from your caregiving responsibilities to rest and recharge. Respite care options can also be found in the Resources section, such as by searching in your local Area Agency on Aging (AAA) Eldercare Locator.

And as for all your husband's behaviors in general, just remember that this is all common and a part of the disease. He 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 patient and stay positive.

With regard to communication, try to work out other non-verbal ways of communicating with your husband, such as by touch, written words, pictures or symbols, or hand gestures. You will have to learn to adapt to his ever changing needs in this respect, particularly as time progresses. When you talk to him, look at him directly and speak clearly and simply. For example, questions that require a yes or no answer (or a choice between two options) are usually better than opened ended questions if you want to figure out what he wants or needs.

Concerning eating, it is not uncommon for AD patients to completely forget that they have eaten (or forget to eat entirely). Here, a visual reminder such as a large schedule posted next to a clock might be helpful. On it you can list the entire day's agenda: meals, activities, bathing or toileting times, rest times, appointments, bed time, etc. A regular schedule clearly visible to the patient can sometimes help to decrease anxiety and frustration, because the patient knows what to expect at any given time throughout the day.

And as for clothing, your husband may be overwhelmed by clothing choices in the closet and therefore cannot differentiate between his clothes and yours. Keep his choices simple by laying out an outfit for him to wear each day. It may be more work for you up front, but will probably save you aggravation later on. When you lay out clothes for him to dress, try arranging them on the bed in a logical order just as they would be worn on your body (for example, sweater above pants, with socks down by the ankles of the pants, etc.) You may still have to provide some assistance when he dresses, but let him do as much as he is capable of doing on his own.

My husband has Alzheimer’s disease, and while he is very easy to care for he does have habits that are annoying. He tends to follow me around the house and just stare at me. While I realize that he cannot control his behavior, it is very irritating and I would like to find a way that I can cope without getting upset. [ 11/04/09 ]

Taking care of a loved one with Alzheimer's disease can definitely try your patience at times. As you have said, you need to keep in mind that your husband cannot always control his behavior and remind yourself that what he does is not purposely meant to annoy you. Most likely, he follows you because he is confused and feels very insecure—he may feel anxious and vulnerable when he cannot see you. Patients with Alzheimer's disease often live in the now. They sometimes cannot 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 husband's behavior may simply be an attempt to provide a bit of continuity in his life, a sort of visual anchor. He knows you, he trusts you, and you make him feel safe. So if you start feeling annoyed again, try to remember that by letting him follow you around, you may very well be providing him with a source of comfort.

My husband has gone from mild Alzheimer’s disease to a very advanced stage in a very short period of time. Is this normal, or is it possible that he has some other condition? [ 11/04/09 ]

Because Alzheimer's disease progression can vary widely from person to person, it is difficult to say if your husband's case is outside the realm of “normal.” How fast the disease progresses depends on a number of factors, such as the age at diagnosis, the severity of the disease at the time of diagnosis, and (as you alluded to) whether or not the patient has any other medical conditions. It is possible, for example, that your husband may have had several mini-strokes since his Alzheimer's disease diagnosis which went unnoticed, and the cumulative effect of these strokes may have served to hasten Alzheimer's disease progression. Poor circulation due to diabetes, cardiovascular disease or obesity may complicate the issue too. Infections of the brain, such as meningitis or encephalitis, or tumors in certain brain regions can also cause dementia-like symptoms to worsen. Additionally, if your husband suffered any recent head injuries, this may have served to accelerate disease progression as well.

Contact your husband's doctor and tell her your concerns. Try to relay as much specific information as possible, such as approximate dates that you noticed a significant change in his behavior and anything else that you might suspect is medically relevant (a high fever or chills, a drooping of one side of the face, slurred speech, muscle tremors or sudden muscle weakness, etc.) It is certainly possible that an unrecognized underlying medical condition may have contributed (or may still be contributing) to your husband's quick decent. The doctor should be able to test for any obvious culprits and determine if there is any treatment that can help.

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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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