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Caregiving Questions

Latest Questions and Answers
My dad was placed in a nursing home 3 months ago, and my mom has been visiting him almost daily. Last weekend, she told me that she was visiting him in the afternoons, and because he is usually always asleep then, she said that she was going to "wean" herself from visiting him. I asked her why she just doesn’t visit him in the mornings when there is a greater chance of finding him awake, which was immediately met with hostility. She said that it is hard for her, and that I need to support her. I feel like she is abandoning my father. I suspect she is looking for some sort of approval from me, but all I can say to her is that it is "her call." I don’t think it is my place to approve or disapprove of her behavior. I’m doing my best to accept it. I live 4 hours away, so I have seen dad and how responsive he remains. But, my siblings sympathize with mom, and see no need for her to visit him. Do you have any suggestions on how to handle some of these delicate family dynamics? [ 01/13/11 ]

Even under the best of family circumstances, dealing with the ramifications of a loved one having Alzheimer's disease is challenging for everyone. Although you say that you are trying not to judge your mother's behavior, based upon your word choices it is evident that you feel her choices are not in line with your own opinions (abandoning” your father; your mother's “character flaws”, etc.) Your mother may sense this as well, given that she responded with hostility to your suggestions. Everyone has different coping mechanisms. Your mother's is clearly different from yours and this is neither a good thing nor bad thing—it just is.

Listen to your siblings and go easy on your mother. It must be terribly frightening for your mother to realize that her lifetime friend and lover is slowly being swallowed by this horrible disease, and that soon she will be alone. Yes, he is your father and you, I am sure, are also horribly saddened and frustrated by the knowledge of the disease, but this realization may be unlike that of your mother's. Sometimes the children of Alzheimer's disease patients find it easier to cope with their parent's disease than the patient's spouse does, particularly if the children are not engaged in the day-to-day care of the parent. You live 4 hours away from your father, whereas up until 3 months ago your mother lived with your father and experienced first-hand how the disease was changing him. She now visits him nearly every day. She is closest to the situation, and therefore probably is most aware of how the disease has ebbed away at his cognition and memory. Undoubtedly, this is painful for her to witness (as it is for all of you), and her way of coping with this is to slowly emotionally distance herself from your father, most likely as a form of self-preservation. Again, this is neither good nor bad; it is simply her method of dealing with a heartbreaking, complicated situation.

At the moment, you may be experiencing more emotions than you are aware, and these may be what are driving a wedge between you and your family. If you have not already done so, you might want to consider talking to someone independent from your family who can provide you with unbiased advice and support, such as a therapist, clergy, or grief counselor. You and your family might also benefit from talking to a support group for families affected by Alzheimer's disease. You can search for Alzheimer's support groups in your area by visiting our Resources section, such as under the Caregiving and Caregiver Support heading in Helpful Organizations.

Regardless, if you truly want to maintain family harmony, calmly tell your mother that while you both have differing opinions, you know how difficult it must be for her and therefore you will support her decisions no matter what. But don't say this unless (or until) you really mean it. Good luck and I hope that this experience will strengthen you and your family and pull you all closer together.


My father is 90 years old and has Alzheimer's disease. He currently lives alone in a senior complex about 8 minutes from my home. Although he can feed, dress, and bathe himself, I take care of his other needs. When he makes a statement in a group of people (such as at church) that is inaccurate, should I gently correct him? Would it be better to allow his inaccurate statements to go uncorrected? [ 01/07/11 ]

Correcting your father's inaccurate statements, particularly in front of others, may make you feel better but it will probably erode your father's self-esteem or even make him upset in the long run. Anyone who knows your father and has regular contact with him should already be aware of his diagnosis (or should be informed in private) and hopefully will be tolerant of his inaccuracies. Don't worry about what the store clerk or a waiter might think if he says something untrue—it really doesn't matter because you'll probably never encounter these people again.

Consider instead just going along with what he says, especially if the erroneous details are irrelevant in the grand scheme of things (a blue car instead of a red one, etc.) If your father says something grossly inaccurate that confuses the listener, you can say something like “And all this time I thought Beth was a dentist, not a truck driver. It shows you what I know!” You can also try asking your father for clarification about what he said by giving him a simple choice, such as “Did you work in India or Indiana, Dad? I always get those mixed up.” If you play the fool or act like you're the one with the memory problem, then it will take some of the spotlight off of your father and possibly give him an opportunity to correct himself without losing face.


How should someone respond when someone with Alzheimer's disease discusses things that are not accurate, such as thinking they are someone else, mistaking their husband for a boyfriend, or asking to return to their home when they are actually already at their home. [ 01/05/11 ]

Like everything else, it depends on what is being asked or stated by the patient. Generally, it is best to avoid correcting inaccurate statements to avoid getting into an argument with the patient. Arguing is often futile, and only serves get the patient agitated. Even if the patient does not become outwardly upset, he or she may lose confidence and self-esteem if his or her statements are constantly being corrected. Instead, you can try playing along briefly and then redirect his or her attention to a different subject. For example, if the patient thinks she is a famous actress, say “I am so lucky to have you here today because I'm a big fan. You know who else are fans? Those people over there, and I bet they'd love for you to sit and play some cards with them.” Or in the case of the patient who thinks her husband is a boyfriend, say “So you're not married yet? What are you waiting for? Now what types of flowers/decorations would you want to have at your wedding? What is your favorite cake flavor?” Then change the subject to baking or something else.

Asking to return home is a common theme amongst Alzheimer's patients. Often this stems from a desire to be somewhere where they felt needed and safe, such as their childhood home or a home they raised a family in, etc. In this case you can ask them to tell you about their home and what they like best about it. If you try to discern the underlying emotion in their stories (fear, loneliness, frustration, etc.), this might provide you with a clue about why they keep asking to go home. Then reassure the patient that he is loved, that he is not a burden, and that he will be well cared for. Finally, try to redirect their attention to another topic or activity.


My brother was diagnosed with Stage 1 Alzheimer's disease about 18 months ago, and his wife put him in a home. He has never been violent until the one time he shook her. He has suffered from depression for many years, and he is again talking about suicide. He says that he doesn’t want to go on with life. I live 6 hours away from my brother, but try to visit him once every few months and email him once a week. I love him very much. Are the depression and suicidal thoughts typical symptoms of the Alzheimer’s disease? [ 01/04/11 ]

Depression is a fairly common problem in Alzheimer's disease patients, particularly those in the early stages of the disease who are aware of their own cognitive decline. One study found that a diagnosis of Alzheimer's disease by itself increases the risk of both depression and suicide in elderly patients. This study reported that people who had a higher level of daily functioning (that is, they generally had mild symptoms or were in the early stages of the disease) and had previous suicide attempts were at an elevated suicidal risk. In agreement with these findings, a more current study (Draper et al. Alzheimers Dement. 2010 Jan; 6(1):75-82) also indicated that early diagnosis of Alzheimer's disease or other dementia may actually increase the risk of suicidal thoughts.

Therefore, if you have not already done so, please talk to your sister-in-law about your concern for your brother. You or your sister-in-law should also alert the staff at his care facility that your brother has been having thoughts of suicide. The staff may already be aware of this, but it won't hurt to relay your concern. Talk to his doctor as well; your brother's antidepressant medication may need to be adjusted. You or your sister-in-law may also consider insisting that your brother see a mental health professional who has experience with the elderly and with dementia.

Finally, continue to visit, write or call your brother as much as possible. In addition to the weekly emails, consider calling him once or twice a week and sending him a hand-written letter. A paper letter is something he can actually hold, touch, and re-read whenever he wants, not just when he has access to a computer. And when you speak to him, be sure not only to seem genuinely interested in what he has to say, but also tell him that you love him and are concerned about him. Additionally, you might consider contacting a suicide hotline on behalf of your brother for more assistance and advice.


My mother keeps asking about her children and thinks that they are still young. How can I help to calm her down when she wants to be with them? [ 12/22/10 ]

The fact that your mother thinks that her children are still young is not that uncommon for an Alzheimer's disease patient, who often confuse the past with the present. Your mother may be remembering a time when she felt needed and valued, and therefore may have a desire (a subconscious one, granted) to return to this “happier” time in her life. This is probably why, when you inform her that her children are grown now, she becomes upset. There isn't much point trying to reason with or use logic on a dementia patient—they often are so far into their own reality that arguing with the patient will only serve to agitate them even more. In this instance, therefore, it might be best to play along with your mother's questions for a while, then try to change the subject to something less distressing.

Additionally, you might want to consider doll therapy as a means to help your mother. Doll therapy involves giving a doll baby or teddy bear to a dementia patient and allowing them to interact with the doll in whatever way they want (i.e., dressing the doll, feeding it, rocking it to sleep, etc.) One formal study found that patients given dolls to “care for” tended to be more communicative with caregivers and less prone to negative behaviors, such as agitation or anxiety. Doll therapy seems to bring out the nurturing instinct in many dementia patients, particularly females, who may be reliving memories of being a mother of an infant, a time in their lives when they were very much needed and useful.

Non-formal observations by caregivers recommend that the doll be as lifelike as possible, and be introduced to the patient while he or she is still in the early stages of the disease to allow time for bonding with the doll. Given in the later stages, the doll may be less effective.


My mother was diagnosed with Alzheimer's disease 5 years ago. She has lived with me for the past 4.5 years. She takes Namenda, Aricept, Singulair, Amatiza, Mucinex, a multivitamin, a B complex capsule, vitamins C and D, calcium, melatonin, magnesium, potassium, an omega 3 supplement, 81 milligrams of aspirin, and a probiotic. Her physician is aware of what she takes. For the past year, several times a week, she complains of body aches. She states she aches from head to toe. I took her to the doctor and she suggested that we take her off all of the supplements. I did and nothing changed, she still ached. She does not have a history or any other signs of arthritis. She has become less active, so I have her going to adult day care 2 times a week. At day care, she exercises and moves around the room. At home, her normal routine is to get up in the morning and head to the couch and lie down. Are the body aches a normal Alzheimer's symptom? [ 12/20/10 ]

Alzheimer's disease is not typically associated with body aches, so it is most likely something else that is causing your mother's pain. Vitamin B12 deficiency can sometimes cause body aches, but since your mother is on a vitamin B complex supplement, this probably is not the cause. Low progesterone levels are also a culprit in some instances, and a routine blood test could determine her hormone levels. However, based on your description, it is possible that your mother might have depression, chronic fatigue syndrome, or possibly even fibromyalgia. It is not uncommon for dementia patients to suffer from depression, and depression can provoke symptoms such as fatigue and chronic pain. In fact, chronic pain and depression are so interrelated it is sometimes difficult to determine which condition started first. It would be prudent to ask her doctor to review her medications and possibly give her another check up regarding the body aches and pains, and to check for signs of depression as well. Only he or she can help to narrow down the causes of your mother's pain.

You are right to encourage your mother stay active both socially and physically, as well as to drink plenty of fluids to stay hydrated—these are both excellent ways to keep muscles and joints healthy and (hopefully) prevent more serious aches and pains. Also, you say that you are at work all day. It is possible on these days your mother is simply bored at home. On the days your mother is not at adult day care, perhaps you can arrange for an in-home visit by a nursing assistant or family friend to check in on her and encourage her to move around, along with providing social stimulation.


Why does my father keep saying he is going home to see his mother? What do I say to him? [ 12/19/10 ]

The desire to return “home”—be it their last residence or their childhood homestead—is very common in patients with Alzheimer's disease. Patients also often confuse the past with the present. You father may be saying that he wants to go home to see his mother because that is a place he may have felt safe or needed. Sometimes, Alzheimer's disease patients feel like they are a burden to their caregivers, or else they may feel like they are no longer a valued member of the family or of society in general. They feel as though they have lost their definition of who they are.

So the next time your father says he is going to see his mother, try to get him to talk about it a bit more to see if you can determine the underlying emotion behind his repeated statements of returning home. You can draw him out by asking him to tell you more about his favorite memories of home and of his mother and family, etc. Even if you've heard the stories before, just let him talk. Does he feel threatened, scared or lonely in any way? Does he feel useless or depressed? Really listen to what he is telling you and try to read between the lines. Once he is finished telling his stories (and once you think you might have some idea about the emotion stemming from his statements) be sure to reassure him that he is loved and valued, and that he will be loved and well-cared for no matter what happens. Repeat this as necessary, continuing to reassure him and soothe his anxieties and fears.


I am a 49-year-old woman and have Alzheimer’s disease. My dad, his mother, and six brothers and sisters all died from this disease. I know what I went through when I took care of my dad. He was once a man and twice a child. I don’t want my kids to go through what I did as a teenager. Please help. [ 12/18/10 ]

If you have not done so already, now would be a good time to sit down with your family lawyer and work out your finances and end-of-life planning. Although it may be very difficult to discuss with your family, this is something that needs to be dealt with now. I understand your desire to not want to burden your family, and therefore the sooner you have this conversation with your family, the better for all involved. Your family may not have any idea about how you want to be taken of, so you will need to inform them of your desires while there is still opportunity to plan. At the very least, you need to make some tough decisions to sort out your finances, establish a living will, and put in place any other advanced directives. These are things that you can have in place now that will help your family in the future. No one wants to think about these things, but they are absolutely essential for preparing for what lies ahead.

There are treatment and care options available now that probably were not available when your father suffered from the disease. For example, there is more availability to skilled nursing care at home now, and there are drugs that can improve functionality and thus prolong the time before such skilled care is needed. There are also assisted living facilities that might be an option depending on your family situation.

In the meantime, don't beat yourself up. This is certainly not something that you asked to have happen to you and there was no way to prevent it from happening. Now that you have the diagnosis, try to be realistic and practical about your health and what you can still control. As much as you are able, stay active and healthy by eating a well-balanced diet, getting regular exercise, and going for regular doctor and dental check-ups. You may ask what the point is now. The point is about maintaining your physical and emotional health as much as you are able—think of it as one less thing your family will have to worry about. For example, regular exercise and other healthy habits can help to stave off depression, diabetes, high blood pressure, etc., which are all things that may complicate your care down the road. And be sure to talk to your doctor if you feel depressed or overly anxious—prescription medication might be of help in these instances.

It also may help to talk to others who have recently been diagnosed with the disease. Their overall situation may not be identical to yours, but they undoubtedly will be facing many of the same decisions that you will have to make and may therefore be a source of support and comfort to you.


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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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