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Caregiving Questions

Latest Questions and Answers
My mother has advanced dementia and for the past few months she has been moving and jerking continually. She does "pelvic thrusts" while sitting or lying down. What is the cause of these movements? [ 01/28/10 ]

About a third of Alzheimer's patients have been reported to develop a condition called myoclonus, which is similar to the sudden involuntary jerks and muscle twitches you may experience when falling asleep. The muscle spasms themselves are not painful, and if your mother already requires constant care, then they probably are not as debilitating as they would be to someone who is still mobile (i.e., muscle spasms can interfere with activities of daily living or could cause a person to fall and injure herself). Even though there are medications that can help reduce muscle spasms, there are always side effects to consider when introducing any new drug. Please consult with your mother's physician for further advice.

I am concerned that my 84-year-old mother-in-law may be showing early signs of Alzheimer’s disease. She never seems to remember anything that I tell her, appears depressed, does not want to do much of anything of late, appears confused about what day it is, has a vacant look and can drop off to sleep easily during the day (but says that she cannot sleep at night). I am not sure if these symptoms are related to old age or if they are related to something more serious. Any advice would be helpful. [ 01/26/10 ]

As people age, their memory may decline, but this is completely normal. However, normal aging does not necessarily explain the confusion, apathy, depression, and sleep problems you noted your mother-in-law to have. It is therefore possible that the symptoms you list are indicative of another condition.

For that reason, it would be wise to get your mother-in-law examined by a physician who can help to diagnose what the cause of her symptoms may be. Your mother-in-law may be depressed, for instance, which alone can lead to memory impairments, confusion, apathy, difficulty concentrating, and sleep disturbances. Or the diagnosis may be something more serious, such as dementia. Besides Alzheimer's disease, there are several causes of dementia in the elderly that can be treated and even reversed. For example, memory impairments and confusion consistent with dementia can be the result of hormonal imbalances (thyroid hormones in particular), vitamin deficiency (such as vitamin B12), or infections of the brain (such as meningitis)—all of which can be treated. So a doctor's evaluation and diagnosis can be particularly helpful to help figure out the cause of her symptoms and possibly even treat them.

Even if your mother-in-law were to be diagnosed with mild cognitive impairment (MCI) or probable Alzheimer's disease (AD), this diagnosis can be useful too. Taken early, the medications currently available for the treatment of AD can help to slow the debilitating effects of the disease. A proper diagnosis, whatever it may be, can also help to prepare your mother-in-law and your family for deciding which course of action to take for the future; particularly should your mother-in-law be found to have Alzheimer's dementia or another such degenerative disease.

My mother has a mild form of dyslexia, and due to family circumstances this problem is getting worse. I notice that she is having more difficulty finding the right words, not finishing her sentences, and becoming absent minded and confused. She gets frustrated and angry when people don't understand her. The symptoms have become worse during this past year and I wonder if it is possible that these changes are signs of Alzheimer’s and not dyslexia? [ 01/19/10 ]

It sounds as if your mother may have dysphasia (also referred to as aphasia), which is an impairment of the ability to comprehend or produce spoken or written language, as opposed to dyslexia, which is a learning disability affecting a person's ability to read and spell. Regardless, this symptom coupled with mild confusion, forgetfulness, and behavioral changes all indicate that something is wrong, but only your mother's doctor can determine what may be causing these issues. It is true that these things are symptoms of Alzheimer's disease, but they are also symptoms of numerous other conditions. For example, head injury, mild stroke, viral infection of the brain or nervous system, brain tumors, chronic depression, hormonal imbalances, certain vitamin deficiencies, and chronic sleep deprivation, to name but a few, can all cause mild confusion, forgetfulness and behavioral changes. Therefore, it is best that your mother sees her primary care physician as soon as possible for a thorough examination and diagnosis, because many of these conditions can actually be treated and even reversed with proper medical care.

My grandfather’s doctor believes my grandfather has developed Alzheimer’s disease. I don’t like going to his house because all he does is scream at me. He never used to be like this. Is this a symptom of Alzheimer’s disease or could there be something else causing him to behave this way? Also, is there anything that can help control these outbursts? [ 01/17/10 ]

Alzheimer's disease can cause dramatic changes in a person's behavior, which can lead to emotional outbursts and yelling. Even under the best of circumstances, visiting a dementia patient has its challenges—and screaming certainly adds to the difficulty. But for your grandfather's sake, please continue to visit him. He may not seem like he appreciates your visit, but the social interaction—and the knowledge that people care enough about him to visit—are definitely good for his moral overall.

There are medications that can help reduce aggressive behaviors in Alzheimer's patients, but this is something your grandfather's physician and primary caregiver need to discuss. You can mention it to his caregiver, but the decision of whether or not to use such medications ultimately rests with your grandfather and his caregiver.

However, you may be able to help the situation just based on the way you interact with your grandfather. When you visit, try to avoid agitating him in any way. Talk to his primary caregiver beforehand for advice, and ask about anything in particular that might trigger these outbursts. Be aware of what you say and do—both words and/or actions could be potential landmines (such as bringing up a topic he dislikes or sitting in his favorite chair). It may be difficult to know what will set him off, and these things may even change on a daily basis. So it is best to try to stay calm at all times, even if he is yelling at you. When you talk to him, look directly at him and speak clearly using uncomplicated language—sometimes Alzheimer's disease patients become agitated simply because they cannot understand what someone is trying to tell them. If he starts yelling, try shifting his attention to a new topic or activity, or if possible just leave the room until he has calmed down. Allow your grandfather to guide the conversation whenever possible, even if it means hearing the same story over and over again. And finally, do not try to engage him in a yelling match as this will only serve to upset him more.

My grandma is in the last stage of Alzheimer’s disease. I'm just really confused on how to handle this situation. She has meant so much to me and I feel like no one truly understands how I feel. [ 01/15/10 ]

Dealing with the complex emotions that come with witnessing a loved one succumb to this terrible disease can be overwhelming, so it is good that you are trying to understand and work through these emotions. And it is not unusual that you feel isolated in your situation, but you are definitely not alone. There are others who understand what you are going through; you just need to find them. Your best bet is to locate an Alzheimer's disease support group in your area. Many of the individuals in these groups have been where you are, and you can talk to them and help sort out your feelings. If this option does not appeal to you, try talking to someone who can offer some unbiased support, such as a counselor, therapist, clergy or other spiritual advisor, or anyone else that you feel comfortable talking to. And do not discount that fact that other family members may be just as upset by your grandmother's disease as you are; they just may have different ways of coping with their emotions. So I would also encourage you to talk to your other family members, as you may find out (once you actually get them to talk about their feelings) that they are actually right there with you.

Can you please provide me with the long-term and short-term goals concerning the care of a resident with Alzheimer’s disease? [ 01/13/10 ]

In the short-term, a patient's day-to-day physical and emotional well-being are of primary concern, as is the patient's comfort and safety. Any new or recurrent health conditions need to managed, which may require regular doctor and dental check-ups. Establishing a daily routine can be good short-term goal. In addition to meals, rest periods and normal toileting and grooming activities, the routine should allow for regular exercise and mental stimulation, such as social activities with other residents or individualized engaging activities (such as painting, doing crafts or other hobbies, etc.) tailored to fit the ability of the patient. In general, the quality of the daily social interactions you have with the patient is ultimately more important than the quantity of time you actually spend with them.

As for the long-term, keeping the patient comfortable is the main goal. Managing pain, discomfort and other disease conditions can become more challenging as the disease progresses, but still is possible with the supervision of a doctor. Any planning requiring end of life decisions should be done well before the resident becomes incapacitated. If you are a care provider at a facility, and assuming the facility honors such agreements, you should strongly encourage the patient's family to decide upon any advance medical directives (such as living wills) and financial matters (such as durable power of attorney or living trusts) before the patient is declared mentally unfit for making such decisions. Finally, you should strive for achieving consistency of the patient's routine, understanding and being friends with the patient, and working out an effective non-verbal (or limited verbal) means of communication with the resident long before he or she loses the ability to comprehend what you are trying to accomplish.

Are there signs that could indicate whether an Alzheimer’s patient will soon become incontinent? How does a caregiver prepare for this event? Do you have any recommendations as to required diaper or protective items that a woman would require? I am 88 years old and my wife’s sole caretaker at home. I just dread the onset of incontinence and would like to know how to handle this situation with the least embarrassment. [ 01/11/10 ]

With dementia, there may be no warning signs if or when your wife should become incontinent—it could occur as a sudden new condition. If, however, it comes on gradually, one early symptom would be slight urine leakage that will be noticeable in her underwear. So be sure to check her undergarments when you do laundry—they could reveal more than she can tell you (or is even aware of). If she constantly feels as if she needs to use the toilet, this may be a sign of incontinence (though it may also be a symptom of a urinary tract infection). Also, if when she is urinating it seems that her urine flow is erratic, this might be indicative of bladder control problems.

Adult diapers come in all shapes and sizes these days according to a patient's needs. There are small pad-size ones that have adhesive backing and fit into underwear much like a sanitary napkin. These are useful if there is only a small amount of leakage and/or your wife still has a good amount of bladder control. There are also larger full-size undergarments for more severe incontinence issues. Regardless of what you use, make sure that you change (or remind her to change) the items regularly for sanitary reasons and to prevent skin irritation. Also, you may want to consider purchasing a waterproof mattress pad and an extra set of sheets for her bed.

As for dealing with incontinence as a caregiver, the best way to handle such a situation is to maintain a calm demeanor. Don't cause a big fuss and don't scold her, as she will probably already feel embarrassed. Just clean her up and remove the soiled items in a matter-of-fact manner, then get her into clean dry clothes and go about your normal business. You can introduce any adult incontinence pads in the same manner, just make sure she understands what they are for and how to use them, or assist her in putting them on if necessary. Just tell her that “these things happen” or lighten the mood by joking that “it was bound to happen to one of us one of these days.” Reassure her that you don't think any less of her and that you'll still love her no matter what happens—a few simple words can go a long way toward putting her mind at ease.

What do you do if your husband just wants to go outside at night all the time? [ 01/07/10 ]

For your husband's safety and your own piece of mind, your best bet is to ensure that your home is locked up tightly at night so that your husband cannot easily leave. For this, deadbolts that lock from the inside are useful, so long as your husband does not have access to the key. Windows will also need to be secured by some sort of locking mechanism for which only you have the key. Hang bells or other noisy things on the door handles, to alert you if he is trying to open a door. If your husband's vision is poor, you can also try placing rugs with large dark-colored block designs in front of door exits. Dementia patients with poor vision can mistake the 2-dimensional floor objects for solid 3-dimensional objects or holes in the ground, and are deterred from crossing them. Motion-activated lights, such as are often installed outside, can be used indoors as another deterrent for the door exit area. However, it is important to keep in mind that these measures, while deterring your husband from exiting, may also serve to confuse or agitate him. So you may still need to guide him safely back to bed after he has “triggered” a safety mechanism.

If his nighttime wandering is very persistent, you may also want to enlist the help of a close friend or family member to provide a break for you so that you can get a good night's rest once in a while. Your heath and well-being are just as important as your husband's, and maybe even more so if you are his primary caregiver. If you are consistently not getting enough sleep each night (or a poor quality of sleep), both your health and his care may suffer as a result. Therefore, if there is no one whom you can ask to help you with the occasional overnight responsibility of keeping watch over your husband, you should inquire about overnight respite care or even daytime respite care to allow you to catch up on some sleep during the day.

Your local Area Agency on Aging (AAA) Eldercare Locator can connect you to helpful services in your 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.

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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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