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Caregiving Questions

Latest Questions and Answers
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.

My husband complains of a sore throat and sore jaw. He refuses to eat all food except for yogurt. For 2 weeks now, he's been eating yogurt 3 times a day. The doctor wants to run some tests on his throat but my husband just starts screaming and yelling. What are my options? I cannot force him and cannot convince him. Please help. [ 12/16/10 ]

You are right in that you cannot force your husband to see the doctor and, most likely, you cannot use reason to convince him otherwise. However, you can try to coax him into going. Tell him that you are worried for him and that you hate to see him in pain, that you would feel so much better if he would just see the doctor to determine the cause of his pain. Call his doctor and ask what kinds of tests might need to be performed in the evaluation. Your husband may be anxious about seeing the doctor because he thinks the tests might be painful. Perhaps there are non-invasive tests the doctor could do that would not cause discomfort or only minimal discomfort for you husband. If your husband still refuses to go, stop asking for the time being. Try again in a week or so, or if the pain intensifies or he develops any new symptoms.

In the meantime, insist that your husband eat other things besides just yogurt. At the very least, you can try giving him liquid supplement drinks (such as Ensure) served cold, which might be soothing to his throat. You can also try blending fresh fruit into the yogurt with a few ice cubes to make a yogurt smoothie, possibly along with some wheat germ or ground flax seed. This will at least provide a little fiber in his diet. There are many healthy yogurt smoothie recipes online that you can try – just be mindful of added sugar. Stick with fresh fruit over fruit juice whenever possible for the added fiber they provide. If it is a texture or consistency thing, you can also try blending other foods into a drink for him: cooked vegetables such as carrots, squash, peas, yams, beets, etc. can be blended with a little of the cooking water or some low-sodium broth for a simple “soup” which can be served warm or, if he prefers, chilled. Continue to offer a wider selection of foods. But stay positive and encouraging when you do this. If you push him too much or threaten him to eat, he might revert back to just eating yogurt.

Without a doctor examination, unfortunately, it's impossible to say what might be causing his sore jaw. It could be a dental problem, a muscle issue, anything really. Check with his doctor about what types of pain relief medicine might be helpful for him.

Caring for my 86-year-old wife with Alzheimer’s disease is complicated by her obsessive fear of falling and her inability to remember anything that occurred minutes ago. She is physically able to get up from a sitting position and walk with a walker; however, she has become convinced that if she does so, she will fall. That has carried over to the point where she is now also convinced that she is physically unable to stand up. I am able to get her to stand by diverting her attention to something else, but it becomes increasingly difficult to do so each time it needs to be done, such as for bathroom visitations. I cannot point out to her that she was able to do this an hour ago because she does not remember it. Is there any way to lessen this obsession? [ 12/16/10 ]

As you have stated, it is a lost cause to try to use logic to reason with your wife, because she simply forgets the outcome of the conversation. If your wife is anxious about falling, make sure that your home is as safe as possible for her when she walks. Put away objects that could pose tripping hazards, tack down loose carpets and rugs (or remove unnecessary rugs), store unnecessary furniture, keep walkways through the house clear and wide, and install handrails and adequate lighting wherever necessary. Sometime if a person has trouble seeing, it can translate into anxiety over moving about, because he or she may fear bumping into an unseen object. For this reason, it might also be a good time to get your wife's vision examined if it has not been checked in a while.

If your wife is not already on a schedule, you can try scheduling her bathroom visits on a chart near a clock so she can clearly see when the next bathroom break will be. This might help to reduce anxiety when the time comes to visit the bathroom again. Although it may be difficult or seem tedious to you, continue to use distractions to get her to use her walker. Stay positive and encouraging, and reassure her that she is safe from harm.

My mother is in the moderate stage of Alzheimer’s disease. She lives in her own home now; however, we think it's time to move her in with family during the next couple of months. Does anyone know how disruptive it would be if she lived with my brother for 3 weeks and me for 1 week each month. My sister thinks it would be best for mom if she moved into an assisted living facility. I appreciate your thoughts on this issue. [ 11/10/10 ]

If it is not possible for you or your brother to keep your mother in one location the entire time, then it might be better if she went to live in an assisted living facility. Predictable routines and environments are typically best for Alzheimer's patients because without such predictability, patients can become easily disorientated and confused, which can lead to anxiety and other behavioral issues. It is wonderful that both you and your brother plan to share responsibility for the care of your mother, but continually relocating her “home” may become a problem as her disease progresses and she becomes less able to adapt to change. Perhaps it seems overwhelming for either you or your brother to take on full responsibility for your mother's care and this is why the joint-custody situation seems appealing. Even though it may appear sensible to consider share custody, it is not ideal for an Alzheimer's disease patient.

Perhaps you and your brother can make other arrangements wherein you both are still involved in your mother's care, but she lives with only one of you full-time. For example, if you mother lived at your brother's home all the time, then you could assist in her care by running errands for your brother, providing some financial assistance, and/or providing respite care on a regular basis so that your brother can take time for himself. An overnight stay at your home might also be okay once or twice a month, but you will need to gauge your mother's reaction to these visits as to whether or not they cause her excessive confusion or anxiety. If an alternative arrangement with your brother is not possible however, then your sister may be right: it may be best to move your mother into a place where she will have a stable and consistent home environment.

My husband was diagnosed with Alzheimer’s disease 7 years ago, and he lived at home until 4 months ago. I want to bring him home for an afternoon visit, but I wonder if this would not be a good idea because his short term memory is gone and he doesn’t know the names of all of his children. I took his trumpet to him last week and he played jazz and improvised for 45 minutes. This is the hardest thing I've ever experienced. We have been married 59 years and I wonder if the life that we knew together is now over? Please help. [ 11/10/10 ]

It certainly is difficult to stand by and watch as the person you've known for so many years starts to slip away, but you still have time to enjoy many things with your husband. Go ahead and bring him home for a visit. If the visit goes well, then consider taking him on an outing or having him visit you at home on a regular basis, perhaps once or twice a week depending on how much you feel he can tolerate. And of course, continue to visit him regularly at the facility as much as you can manage. Alzheimer's disease is curious in that a person may forget his or her own child or spouse but remember how to play the piano or knit, for example. These skills require both motor and cognitive components, and sometimes they are so deeply “ingrained” in a person that multiple areas of the brain would need to be damaged by the disease before the skills are lost. So this is why your husband can still play his trumpet, but cannot always remember the names of his children.

Taking your husband's trumpet for him to play was actually a very clever thing on your part. Music therapy, for example, has been reported as being helpful to Alzheimer's disease (AD) patients in that it helps to reduce stress and anxiety. Also, he must enjoy it because it is something that he can still do well, which provides a sense of gratification and achievement. So encourage him to play whenever you are with him. You can also listen to some of his favorite jazz albums together—he may enjoy listening to familiar music as much as he does playing it. Understandably, you may feel like you are facing a huge dark unknown about your future together. Though difficult to reconcile, this is a completely normal reaction. As hard as it may be for you, try not to think too far into the future. Just like your husband, try to live in the moment and take things day by day. Realize that some days are going to be better for him than others (and some days will thus be worse than others). So try to make the most of your good days together and appreciate all the things that he can still do with you. And while your husband is still capable of talking, try to work out some means of non-verbal communication with him such as by touch or stares—this will help immeasurably when the time comes that your dear husband is no longer able to communicate with you by speech.

My mom is 84 years old and was diagnosed with Alzheimer’s disease approximately 10 years ago. She does not talk and is confused all the time. Lately, she often just sits and she keeps her head down. In fact, her head is way down to her knees most of the time. She looks very uncomfortable. We have tried several things to keep her head up, but it keeps going down again. Is this a part of the disease? Do you have any suggestions? [ 11/10/10 ]

Stooped posture is fairly common in patients with Alzheimer's disease (AD). In some instances, a patient may lean quite significantly to one side or lean forward (such as in your mother's case), in which case it might be called Pisa Syndrome. This stooped posture can also occur in patients with Parkinson's disease (PD) and Lewy Body dementia (LBD). AD can affect brain areas responsible for muscle tone and balance, and therefore gait, postural and balance disturbances can arise. Sometimes, these disturbances are a result of AD medications (such as cholinesterase inhibitors). So it may be helpful to review your mother's medications with her doctor as well as to determine if any other medical factors (PD or LBD) are at play. If her posture is caused by her medications, then adjusting the dose and/or discontinuation of the medication (only on her doctor's approval) should help to resolve the problem.

I provide 24-hour care for a client and I am becoming very frustrated as time goes by. How can I help myself from feeling like this? [ 11/10/10 ]

By “client” I assume your mean that caregiving is your occupation. It is understandable that you feel frustrated considering that you never get any time off. However, you have an obligation to yourself to speak to your client's family about scheduling time off. You need time so that you can relax and decompress, as well as take care of things in your own life. You should tell the family that both your health and your client's care will suffer if you do not get some relief from your responsibilities. Inform your employers that you require at least one day off per week. Do not feel guilty about taking time off because it is necessary for you to maintain your mental and physical health so that you are capable of providing the best care possible for your patient. If the family objects to your request, remind them that this is in the best interest of their loved one—you cannot be an effective caregiver if you feel worn out and at your wit's end.

Also, it may help you in general to speak to other caregivers about what you are going through. They have been there too, and may be able to provide you with some needed moral support. 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.

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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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