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Caregiving Questions

Latest Questions and Answers
My 88-year-old father is in stage 5 or 6 of Alzheimer's disease and he started spitting around the house about 6 months ago, which is driving my 78-year-old mother crazy. He can't help it and he is as sweet as can be, but he just doesn't remember to spit into the lined trash can we have near him. We have signs in various places where he is spitting, but of course that doesn't help. Can mucinex, sucking on a cough drop or a dietary change help with this behavior? [ 06/22/10 ]

Your father may be producing excess saliva (hypersalivation) which may be why he needs to continually spit. If this is the case, sucking on a cough drop or other hard candy will only make this problem worse, as it will encourage the production of even more saliva. Have your father evaluated by his physician to determine if his saliva production is “normal” or if he is suffering from hypersalivation. If the latter is the case, sometimes this is caused by certain medications or drug interactions. For this reason, you should discuss any new medications (even over-the-counter ones such as Mucinex) with his physician before they are added to his regimen. His doctor can review the medications he is taking and may decide to adjust them accordingly.

If this behavior is not caused by hypersalivation or another medical condition, then chalk it up to one of those odd behaviors that just are a part of Alzheimer's disease. It sounds like you are doing your best to remind and encourage your father to spit in the appropriate locations. If this still hasn't helped, you may just have to add more trash cans around the house, particularly in those areas where he likes to spit, and accept the fact that he is doing his best to comply with your requests. It is often very difficult to change such behaviors in Alzheimer's disease patients, so anything you can do to adapt your routine to his new behavior (rather than having him adapt his behavior to your mother's house rules) is definitely a help. Remind your mother that he is not purposely trying to annoy her, and that he would not do it if he could help himself. Although it may be hard, try to find the humorous aspect in the situation. A sense of humor can go a long way in helping to deal with such difficult behaviors.

My mother has Alzheimer’s disease. When she is eating, most of the time she starts falling asleep. Is this unusual and what can be done to help with this behavior? [ 06/21/10 ]

Persons with Alzheimer's disease often lose interest in food and in eating. Patients may have a diminished sense of taste or can, for example, forget what food is or what do with it even when the food is placed directly in front of them. It can help if your mother's meals are kept small, simple, and frequent, and also if she eats her meals with others present. Have someone stay with her while she is eating and try to keep her engaged. You can also try replacing one of her meals with a liquid meal supplement, such as Ensure, which may be easier for her to consume in a short time span.

Regular exercise can also help by providing her with more energy and potentially “working up an appetite.” To the best of her ability, encourage your mother to go for walks, do stretches, or other light exercises such as arm or leg lifts. The activities do not need to be strenuous—anything that gets her moving is good. Also, if she is not already, try to get your mother on a regular schedule for eating, sleeping, bathing, and other activities, etc. Perhaps your mother would benefit from having a short daytime nap or two provided that the naps do not interfere with her nighttime sleep.

It would be helpful for you to also speak to her doctor about this behavior. It is possible that a medication she is taking (or a drug interaction between certain medications) is causing her drowsiness. Her doctor will be able to determine if this is the case and/or if there is any other underlying medical condition that could cause her to fall asleep while eating.

My wife has Alzheimer’s disease. At the present time she still eats as long as we feed her. She has a trainer to help her with routine exercises two to three times a week, but she has hard time standing up and walking. Can you tell me what this might mean? She is my life and I hope that there is something I can do. Thanks for your help! [ 06/18/10 ]

It is not uncommon for persons with Alzheimer's disease to lose interest in eating and in normal daily activities. Persons with Alzheimer's disease or dementia may not eat as they once did because they may forget about eating, for example, their sense of taste may be altered, or they may simply forget what to do when food is placed in front of them. Eating with her in an environment she feels comfortable in may help encourage her to eat on her own. You can also help by simplifying meals—provide only one plate (or bowl) and one utensil. Dispense with any formalities (napkins placed on the lap, general table manners) and allow her to eat any way she wants if she takes the initiative. Finger foods might aide in this respect because patients sometimes find the concept of using utensils confusing. Provide verbal cues to help her recognize what to do, and beyond everything, stay positive and encouraging.

Depending on the brain areas affected by Alzheimer's disease, a person may experience more difficulty with moving about or performing physical tasks that were once easy for them. So it is wonderful that your wife is working with an exercise trainer on a regular basis. If nothing else, this will help to keep her muscles and joints healthy and can benefit her psychological well-being too.

It is also possible that you dear wife may be suffering from mild depression. Please speak to her primary care physician about this at her next visit. Her doctor can evaluate her to see if this is the case and determine if prescribing antidepressant medication would help.

It sounds as though you are providing excellent care for your wife. As a caregiver, it can be very difficult to know if you are doing the right thing all the time, and therefore caregivers often doubt themselves and feel guilty for not “doing more.” Take it easy on yourself and realize that you are doing your best. Try to enjoy every moment you have with your wife while she is still capable of communicating with you. Also, consider joining a caregiver support group. There you can talk to other caregivers about your concerns and find some moral support from others who may be going through the same issues you are currently experiencing. 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."

My mother is 72 years old and has glaring signs of dementia and mental illness (paranoia, for example). Her primary care doctor has referred her to geriatric psychologist. She went once but refused to go back again because they recommended a cognitive function evaluation and medications. She is paranoid, forgetful, aggressive, confused at times, and clearly suffering, but she won't accept any help. Most of her aggression is at my father and he had to move out after being married for 51 years. Our family is suffering greatly and don't know what to do. It's like watching a crash that you know is going to happen, but you no ability to stop it. What shall we do with her, especially under the circumstance that she is in complete denial of her situation? [ 06/16/10 ]

Get together with your family to discuss your mother's situation. If she is currently living alone, then her confusion and forgetfulness could pose a danger if she, for example, forgets that a pot has been left on a hot stove, confuses the amount or type of medication she is supposed to take, or goes wandering on her own outside of her home and becomes lost. Therefore, your family's most pressing concern should be your mother's safety and welfare. Your family needs to come to a consensus about the best course of action for your mother, even if this means you all decide, for instance, that a care facility would be the best option for her now or at some point in the future.

Once your family has reached an agreement about a plan, you all need to sit down together and calmly talk about your concerns with your mother while she still may be able to have such a conversation. Do not expect that your mother will understand or accept everything you have to tell her, particularly since she is suffering from paranoia and confusion. Denial is quite a normal response considering everything, as is the potential for becoming depressed. It is important that you all try to remain calm even if she becomes agitated and starts yelling. Try to address her underlying emotions when you speak to her. For example, she may be scared, lonely, or feeling a loss of control over her life. So continually reassure her that she is loved and that you all only want what is best for her. Work with her in devising a plan that is acceptable to everyone, but be realistic in your (and her) expectations and demands. It is clear that she should not be living alone, though she may be able to remain in her home for some time with appropriate care and providing she takes her medications and visits the doctor regularly.

You and your family should consider consulting an attorney who specializes in elder issues. If nothing else, you can prepare and organize your mother's financial and legal documents, such as a Living Will and a Durable Power of Attorney. In your mother's case, the attorney may recommend that a Power of Attorney for health care also be drawn up. This way, your father, you or another trusted family member can make decisions affecting her health on her behalf. You can identify such attorneys in your area with the help of 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.

Additionally, you should contact your mother's primary care doctor and/or the psychologist she was referred to and explain the situation to them. The medications that were prescribed to her may help in controlling her paranoia and other symptoms, but they are useless if she will not accept them. Her doctors may have some suggestions for getting her to take her medications.

My mother will be 84 years old in August and was diagnosed nearly 3 years ago with dementia. She is currently taking Aricept and Namenda, and it seems to have helped her. My dad is her primary caregiver and I have noticed that he sometimes appears confused; I am concerned about his ability to take care of mom. He says that he is aware of mom's condition, but is still partly in denial because he expects her to be able to do the things that she used to handle easily, such as paying bills. I do not live close by and am concerned because they live on their own. Also, neither mom nor dad has given my brother or me permission to legally speak with their doctor. My dad said that they have told us everything and there is no need to contact the doctor. I tried to explain that it would be in their best interest, if they were unable to communicate with the doctor on their own or on behalf of each other. Do you have any suggestions on how this situation can be handled without alienating my parent? [ 06/08/10 ]

There seems to be three pertinent issues here: 1) the immediate care of your mother, 2) the mental fitness of your father, and 3) the ability to discuss medical issues with your parents' physicians.

Regarding the first issue, it sounds as though your father could use a little help with the day-to-day care of your mother. Because it is not practical for you check on your parents on a regular basis, a respite caregiver or a home health aide—particularly one that is experienced with caring for dementia patients —would be beneficial in this situation. Your father may argue that he does not need help, or he may feel offended by the idea and resist attempts for you to arrange an aide for such visits. This is not an uncommon response of a primary caregiver, particularly if he is the type of person who rarely asks for help. Tell your father that caring for someone with dementia is a very challenging job, and that it is not a sign of weakness or incompetence to receive some help with that care. In fact, some respite aide will only help to make him a better caregiver, as it will give your father a chance for some “down time” so that he can rest and recharge. This is absolutely necessary for both of your parents' health and well-being.

Your local Area Agency on Aging (AAA) Eldercare Locator can connect you to helpful services in your parents' area, including respite care options. Click on the above link to find the phone number of your local AAA or call 1-800-677-1116.

This leads us to the second issue: your father's mental fitness. It is possible that the stress of caring for your mother has made your father more absent-minded and confused. He may, for example, be suffering from a lack of sleep or he may be depressed about your mother's diagnosis. If you suspect that there may be a problem, then it is essential that your father be examined by his primary care physician. How to get him to see the doctor may be another problem altogether. You or your brother may have to go with him to his appointment. You may run the risk of upsetting your father by doing this, but just remember that both of your parents' well-being could be compromised if your father is not capable of caring for your mother and in fact needs some assistance of his own. Their health and well-being is what is your primary concern, so remind your father that any help you offer is ultimately for their benefit.

And as for the legal issues involving access to medical information, it may help for you and your brother to discuss your situation with an attorney who specializes in elder issues. 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 husband has had Alzheimer’s disease at least since early 2006. I had to put him in a home specializing in Alzheimer's disease patients in late 2007 because I could not handle him anymore. He cannot go to the bathroom by himself, always has tremors and now has problems feeding himself or recognizing food. The facility will not feed him; they try to let him feed himself and he is not doing well. He was a very big man (over 200 pounds) and now he only weighs between 148 and 150 pounds. He just keeps his head down and eyes closed all the time; however, he is not asleep. Even though he can talk, he rarely speaks at all. I visit him every day and he is declining. What stage of Alzheimer's disease do you suppose he is in? Sometimes I try to help him, but he is not interested. Thank you! [ 06/07/10 ]

Based on the details you have provided, your husband would appear to be in late stage 2 or early stage 3 of Alzheimer's disease. Your husband's physician can provide you with a definitive answer. Detailed information about the symptoms and stages of Alzheimer's disease is available. You can read more about the different symptoms and stages of Alzheimer's disease in the 'About Alzheimer's Disease' section of our website.

Is it typical for a person with early-stage Alzheimer's to "see" and yet "not see"? For example, my husband will often ask where his razor is, even when it is right in front of him on the bathroom counter. How can he not see it? Similar scenarios could apply to his eyeglasses or wallet. I would like to be more patient with him if I understood that, indeed, this is a symptom of Alzheimer's disease. [ 06/04/10 ]

Alzheimer's disease affects short term memory, so it is not uncommon for persons with this disease to completely forget, for example, why they walked into a particular room or what they were about to do with the checkbook they just retrieved. Similarly, Alzheimer's patients can experience a disconnect between the name of an object and the actual physical object, or what the object is supposed to be used for. For instance, your husband may recognize that he needs to do something in the bathroom involving the razor, but he can't remember what it is. Sometimes patients get “stuck” in the middle of performing a task (or have difficulty starting the task altogether), and need a little help to remind them what to do or how to do it. In these cases, a simple prompt such as “your razor and your shaving cream for shaving your face are on the bathroom sink” could be used to aide your husband. If he still seems “stuck,” then break the task into smaller steps such as: “Lather up a small amount of shaving cream to put on your face, and use the razor to shave the stubble.” Then tell him that you'll be in the next room if he needs any further assistance. Some gentle reminders such as these can greatly help your husband in his daily activities.

I read some time ago that one of the early signs of Alzheimer's disease is an out-of-control temper. My 68-year-old husband definitely has this behavior, but his dad also behaved like this until he died at age 87. Do you think that Alzheimer's disease is causing the temper issues, or is it just related to genetics? My husband’s 70-year-old brother has been diagnosed with some form of dementia and is taking medications daily. Please help! [ 06/03/10 ]

A sudden change in behavior along with memory lapses, confusion, and difficulty with decision making can be early indicators of dementia, but there are many other conditions that cause similar problems. For example, head injuries, infections of the brain or central nervous system, thyroid hormone imbalances, depression, drug interactions, alcoholism, and even certain vitamin deficiencies can all cause symptoms similar to the early stages of dementia. Also, if your husband's angry temper is something that has always been present instead of something that has started recently, then his temper may not be a symptom per se, but rather just his “normal” behavior. Only a thorough examination by his doctor will be able to determine if this behavior is the result of a medical condition such as dementia.

It may be difficult, but try to persuade your husband to go see his physician, perhaps by scheduling annual physicals for both of you during the same visit. Rather than telling your husband that you want the doctor to assess his behavior (which very well may anger your husband), you can say that with advancing age it is a good idea to get regular medical check-ups, and therefore both of you are going to the doctor. He may feel less threatened if you are having a physical as well. Prior to his examination, you can discuss your concerns with his doctor and/or your doctor.

Regardless, you may also benefit from talking to a counselor about your husband and his angry outbursts. The Alzheimer's Disease Education Referral Center (ADEAR), for example, has professionals who can help with issues such as this, as well as generally providing advice on immediate caregiver questions, referring patients and caregivers to help in their area. ADEAR is available 24 hours a day, 7 days a week, and can be reached at 1-800-272-3900. Other useful agencies can also be found under “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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