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Caregiving Questions

Latest Questions and Answers
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.

My mother, who is 88 years old, has advanced Alzheimer’s disease. My father, who is totally coherent and her caretaker, recently broke his hip. He is depressed and tried to take his life this week. We want to move them to an assisted living facility because we feel that the quality of his life will improve. However, my sister feels that it will kill mom to move her from her home environment. My parents cannot afford 24 x 7 live-in help and assisted living is much more economical. I would appreciate any advice concerning this issue. [ 01/05/10 ]

Considering your father's recent injury and your mother's advanced disease, an assisted living facility definitely makes sense for them. Patients in the later stages of Alzheimer's disease can become easily confused, so your sister is partially correct in that moving your mother to an assisted living facility will be a challenge. However, such a transition is certainly not impossible.

Your mother may be anxious or confused by her new surroundings initially, but with time she can be aided in accepting them as her new "home." It definitely helps that your father will be there with her, as this should make the transition easier. Try to have her visit the new home and community as many times as possible before the move, and speak enthusiastically about how nice the new place will be. Being prepared is key to a smooth transition—do not wait until the last minute to pack or plan what to do with furniture or other belongings. As the accommodations at the facility may be smaller than your parent's current home, you and your family will want to determine well ahead of time which items are to be moved and which are to be placed in storage, donated, or discarded. During the transition, try to minimize her stress as much as possible by keeping the actual move to one day. Immediately following the move, try to get your mother back on her regular schedule as soon as possible. The more things that are "familiar" to her in the new environment, the sooner she will come to accept it as home. You can also ask the director of the facility for help and advice on the best methods for transitioning your parents to their new environment.

My wife resides in an assisted living facility mainly because I cannot handle her at home any more. She seems to act normally compared to other residents and also thinks somewhat rationally. She primarily just has short-term memory problems. How do I know if she merely has dementia rather than Alzheimer's disease? [ 12/31/09 ]

Alzheimer's disease is dementia, one of the most common forms of dementia in fact. However, only after thorough physical and psychological examinations will a doctor will be able to tell whether your wife's memory problems and other behaviors are due to dementia in general or dementia of the Alzheimer's type. Knowing whether or not dementia is caused by Alzheimer's can be of value. First, as part of the examination, the doctor will test for common causes of dementia, such as hormonal imbalances, vitamin deficiencies, viral infections, strokes, etc. Some of these causes of dementia are actually treatable.

However, the doctor may find that none of these things are the cause of your wife's memory disturbances and that her condition really is due to Alzheimer's disease. If this is the case, then an Alzheimer's diagnosis may be of value because it will allow your wife to be treated with the appropriate medical therapy. Many of the Alzheimer's disease medications, when taken early on, may help to slow the progression of cognitive impairment and memory loss.

Is there any automated support system developed for people suffering from Alzheimer’s disease? Is there any device that is entirely dedicated to help people with Alzheimer’s disease lead a normal life? [ 12/24/09 ]

Some online support groups do exist for caregivers of Alzheimer's patients, such as the Virtual online support groups can be found by searching for “online support group” and “Alzheimer's.” Interestingly, one study found that caregivers given access to an automated caregiver support system were less bothered by the behaviors of their charges, less anxious, and had a lower incidence of depression than caregivers who did not have access to such a support system. While this type of automated support line is less common at the moment than online forums, the study's encouraging results will hopefully prompt others to set up such support systems. The Alzheimer's Disease Education Referral Center (ADEAR), for example, has professionals who can help with immediate caregiver questions, refer patients and caregivers to help in their area, and are available 24 hours a day, 7 days a week. ADEAR can be reached at 1-800-272-3900. Other useful agencies can also be found under “Helpful Organizations.”

However, no device, per se, exists that can keep up with the ever-changing needs of patients having the disease. Mostly, such a device is called a caregiver.

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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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