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Caregiving Questions

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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.

It is getting hard for me to get my mom to take a bath. Could you give me some helpful tips? [ 10/26/10 ]

Bathing and personal hygiene can be an issue for the Alzheimer's patient because it is so personal in nature. Some patients may be uncomfortable with the prospect of a bath, either because it is physically uncomfortable (cold bathroom, harsh scrubbing, etc.) or because they may feel embarrassed having a caregiver see them nude, vulnerable, or with incontinence problems. In any case, the subject of bathing may cause your mother to become anxious or agitated if she believes that the bath will in some way bring her discomfort or embarrassment. The difficulty in getting your mother to bathe may also be her way of trying to preserve her dignity—she does want to be told what she should or should not do because it is threatening to her self-worth and how she defines herself as a person.

It is therefore important to try to remain calm and understanding of her feelings, and be flexible in how you might accomplish the bathing task. The following tips may also be of assistance:

  • Try just washing your mother's hair in the sink rather than in the tub or shower.
  • It is not really necessary that your mother takes a bath or shower every day—instead consider sponge baths for the in-between days. This way, she may only need to remove one piece of clothing at a time, or else just lift up her shirt, etc.
  • Make sure that the room she is undressing and/or bathing in is warm and comfortable.
  • Try giving baths in the morning when she may be in a better mood. If she refuses, try again when you think her mood has improved.
  • Use music to your advantage—calming music can reduce agitation (think spa), or else her favorite songs may be used to making showering more enjoyable (who doesn't like singing in the shower?)
  • If it works, you can also try bribing her—a favorite snack, outing, or activity in exchange for a bath.
  • A hand-held showerhead, shower seat, non-slip mats, and large handles for gripping in the bath or shower can all aid in making the bathing experience safer and easier for you mother.

My mother, who is 93 years old, has dementia. She lives with me and my two sisters, and we take turns caring for her. My mom still has a house, but she has not lived there for almost 1 year. We actually need to sell her house and its contents because it is becoming too difficult for us to take care of it. Should we involve our mother in selling her belongings or should we do it without her knowledge? The house is in all our names, so the lawyer said that it is not a problem for us to sell it; however, we all feel so guilty about not including mom in these decisions. Thank you for your input. [ 10/25/10 ]

You and your sisters have been prudent in planning for the time when you will have to make decisions on behalf of your mother. Putting your mother's home in your names is an example of this good planning, so pat yourselves on the back for that. It is never an easy thing to have to assume the role of your parent's caregiver, but it is necessary in this circumstance. Whether or not to involve your mother in the process of selling her home really depends on what stage of the disease she is in, her personality, and how accepting she is of change. If she is basically an easy-going person and not too much bothers her, then it might be okay to include her in some of the simpler decisions, such as whether to keep certain items or give them away. Do not give her more than two or three choices to decide from, and only offer her choices that you can live with. For instance, you would NOT want to ask her if she wants to keep or sell the house; however, you could ask, “Which armchair would you like to keep, the blue one or the tan one?” If, however, your mother has been known to have a stubborn streak or has recently become very argumentative as a result of the dementia, then it may be better not to inform her of your decisions, or at least not inform her until it is all over.

If she is still in the early stages of dementia, she may respond better to an authority figure, such as your lawyer or her doctor, than to you or your sisters when it comes to explaining that her home needs to be sold. You can take a little liberty here in what you decide to tell her. Sometimes the use of a small white lie, such as by explaining that the situation could not have been prevented (for example, the city wanted the property and invoked “eminent domain), could help to avert an argument. Regardless of your mother's cognitive state, do not expect that she will fully understand the logic or reasons for your actions. If you do decide to tell her, make sure you frame the discussion in a positive light. Tell her how happy you all are that she will be living with you, how much you've missed her when you lived apart, and how excited you are for all the fun things that you now can do together on a regular basis.

Your mother's requests to go back to her house could stem from her feeling anxious, scared or depressed. She may associate her home as somewhere where she feels safe and useful, and therefore she may feel uneasy living with you and your sisters, or that she is a burden to you. So most importantly, continually reassure your mother that you love her and that she is not a burden. Try to get her involved in your household chores to the best of her ability—she could, for example, be in charge of folding towels or stacking magazines, which might help to make her feel more needed and useful. Eventually, she will feel more at home in your house, and with luck will cease to ask about her own home.

How will I know when I should put my mom in a nursing home? [ 10/22/10 ]

The decision on when to place a loved one in a care facility is a difficult one and will vary widely depending on personal circumstances. Financial, emotional and social matters factor largely into the decision. Generally, many caregivers may come to a point when caring for their loved one becomes too physically, emotionally, or financially challenging for them, and then it becomes necessary to place the loved one in a care facility.

For safety reasons too, sometimes it is better that a dementia patient is in a secure care setting where trained staff can monitor the patient day and night. Dementia patients sometimes wander out of their homes and can easily become lost or injured. Dementia patients can also pose a safety threat not only to themselves, but also inadvertently to other members of the household (such as pets or small children) through their forgetfulness. They may forget to close gates or doors, forget to turn off stoves or heaters, or leave bottles of medicine in easily accessible places. And sometimes, patients with dementia can become physically or verbally abusive to their caregivers, at which point the caregiver may find their caregiving responsibilities to be too exhausting and emotionally draining. If you find that you can no longer cope with caring for your mother, and if her well-being is suffering as a result of this, then it may be time to consider placing her in a care facility.

But prior to getting to this point, please start researching the different care facilities in your area (assuming you have more than one option) to see which one might be the best match for your mother. Ask whether the staff has experience with dementia patients, what the staff to patient ratio is, what types of programs and activities are available for residents, what a typical day in the life of a resident may be, etc. Always speak enthusiastically to her about how nice the new place will be. Additionally, if possible, try to have your mother visit the new facility before moving her there. Being prepared is key to a smooth transition—do not wait until the last minute to pack or fill out all the necessary paperwork. 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 mother to her new environment.

My mother-in-law is 80 years old and was diagnosed with Alzheimer's disease between 5 and 6 years ago. She is starting to display more of the 'moderate stage' symptoms. For the past 3 weeks she has been in the hospital as she has been having panic attacks every day, which can last up to 5 hours. Are these panic attacks related to her Alzheimer's disease and is there any treatment that can help with these symptoms? [ 10/21/10 ]

Anxiety is very commonly observed in Alzheimer's disease patients. Panic attacks, which are characterized by extreme anxiety or fear and such symptoms as hyperventilation or shortness of breath, rapid heart rate, nausea, chest pain, and sweating, can occur independently of dementia. There does not appear to be a causal link between Alzheimer's disease and panic attacks. However, since many of the unusual behaviors displayed by Alzheimer's disease patients (particularly in the mid to late stages) can be similar to the symptoms displayed in a panic attack, it is possible that the incidence of such attacks is underreported by caregivers and physicians who chalk up the symptoms to the disease.

Treatment for recurring panic attacks and panic disorders in a non-dementia patient generally includes anti-anxiety medications and/or cognitive-behavioral therapy to help retrain a person's thinking patterns. I'm guessing that your mother-in-law's doctors already have tried the former option (medications) with limited success. Unfortunately, since a dementia patient's ability to reason and rationalize is so distorted (or absent), cognitive-behavioral therapy really isn't an option in your mother-in-law's case. Therefore, the best you can do is to try to determine what might setting off your mother-in-law's attacks. Is it something in her environment (loud noises, etc.) or is it a fear of being left alone or hurt in some way? Is there some underlying factor that seems to trigger her attacks? Perhaps it is the hospital environment itself that is causing her to be anxious. If you sense that she might start slipping into “panic” mode, reassure her that she is loved and that everything is okay while you try your best to refocus her attention on something else. You can also try massage therapy to help get her to relax or to aide in keeping her in a relaxed state of mind. In general, try not to over-stimulate her at any one time with too many people in her vicinity or too much activity. Limit the number of visitors she has at any one time, particularly small children who can be very chaotic and disruptive. You can also try using calming smells (think of fresh-baked bread or cookies, or fresh lavender, etc.) in her room to help her relax. Smell is a very powerful sense and can act subconsciously to put us in a calm state of mind.

My grandmother, who is 86 years old, hears disturbing voices and sounds. For example, she might hear somebody from an AM broadcast station accusing her of not paying taxes. Does this mean that she has Alzheimer's disease? If so, how do we inform her of this diagnosis? [ 10/05/10 ]

Sensory changes are very common in the elderly and are not the same as Alzheimer's disease. When auditory acuity diminishes, the brain sometimes fills the resulting silence with invented sounds such as voices or music, but a person's mind may be sharp even though their hearing no longer is. The disturbing and accusatory character of the voices raises another possibility, that your grandmother might suffer from a severe depression with psychotic features or from another disorder in which appreciation of reality is diminished. Her hearing, medical health, and mental status should be carefully evaluated before concluding that she has some form of dementia.

My mother is 94 years old and suffers from dementia. She has lived in an assisted living facility now for 7 years. I have always taken her to church and breakfast every Sunday. I know she looks forward to it. I have noticed that for the last few months she has a day or two of confusion after these Sunday trips. I decided to only take her every 2 weeks to see if that helped. I took her today and just talked to her this evening and she wasn't sure what day it was or what the day would be tomorrow. She asked me to call her later to make sure she was "OK". I hate the idea of not taking her anywhere, but I'm thinking it's getting too hard on her. Would you suggest that I discontinue these outings? [ 09/27/10 ]

Maybe the outings with your mother cause her to have some latent confusion and maybe they do not. For example, it is equally possible that your mother has experienced a noticeable decline in her cognition, but it has nothing to do with her excursions with you. The confusion and the outings may not be related at all, they just may be merely coincidental.

It is more important that you spend time with your mother as part of a routine. If it has been your habit to visit your mother once a week, then by all means you should continue to do so. You do not necessarily need to take her somewhere—you can just sit together and visit or perhaps take a walk around the facility grounds outside. If these visits do not seem to affect her (that is, if she does not seem disorientated the next day), then once in a while try taking her on a short outing. If these short outing go well, then you can increase their frequency. You can prepare your mother for the outing in advance by clearly marking it on a calendar in her room, and reminding her about it several times the week beforehand. This can help to prepare her mentally and to lessen any anxiety she might have about leaving the facility, which could aid in reducing confusion that may result following the outing.

What is your experience with diet, massage, reading, exercise or music, versus medication? I have noticed an amazing difference in my wife's attitude, who has Alzheimer’s disease, since we stopped any medication and use some of the strategies mentioned above. She was diagnosed 2 years ago. [ 09/25/10 ]

All of these alternative therapeutic techniques are wonderful and can really help to improve the mood of an Alzheimer patient. Massage therapy, reading (to her or with her), music therapy and exercise can all aid in decreasing stress and anxiety. This in turn is beneficial to the caregiver, because a patient who is not anxious or agitated will more likely have fewer negative or “problem” behaviors (such as yelling, hitting, etc.) than an anxious patient. There are also several incidental reports that certain foods can help to reduce some of the cognitive symptoms of the disease, though these reports have yet to be confirmed in large clinical trials. For example, coconuts (or coconut milk or oil), apple juice and turmeric (which is found in curry powder) have all been touted as potential therapies for Alzheimer's disease (AD).

While all of these alternative treatments are helpful, they are still not as powerful as the current medications available to AD patients. Cholinesterase inhibitors (such as donezepil) and NMDA receptor antagonists (such as Namenda®) have been clinically demonstrated to slow the progression of cognitive impairment, and which if taken early, can help to extend the amount of time before a patient requires extensive full-time care (such as in a care facility). Of course, the choice to take such medications always rests with the patient. But please speak to your wife's doctor, or a few different doctors even, and make sure you both understand all of the pros and cons of taking AD medications before you completely disregard them.

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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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