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November 6 - November 19, 2020
Many of us remember the day we began high school. We lay awake the night before, afraid of getting lost and not finding the classrooms the next day in a strange building. Every day was like that for Mary.
The time finally came when the physical and emotional burden of caring for Mary became too much for her family, and she went to live in a nursing home. After the initial days of confusion and panic passed, Mary felt secure in her small, sunny bedroom. She could not remember the schedule for the day, but the reliability of the routine comforted her.
Delirium is important to you because occasionally a treatable delirium will be mistaken for a dementia. Sometimes people who have Alzheimer disease or another dementia develop a delirium as well and have symptoms that are worse than the dementia alone would cause.
Thyroid disease, for example, may cause a dementia that can be reversed with correction of a thyroid abnormality.
Some people experience changes in personality. Others retain the qualities they have always had: the person may always have been sweet and lovable and remain so, or he may always have been a difficult person to live with and may become more so. Other people may change dramatically, from amiable to demanding, from energetic to apathetic, or from constantly cranky to very likable. They may become passive, dependent, and listless, or they may become restless, easily upset, and irritable. Sometimes they become demanding, fearful, or depressed.
Some people who have dementia experience hallucinations (hearing, seeing, or smelling things that are not real). This experience is real to the person experiencing it and can be frightening to family members. Some people become suspicious of others; they may hide things or accuse people of stealing from them. Often they simply mislay things and forget where they put them, and in their confusion they think someone has stolen them.
The physician must determine whether the patient is depressed. Depression can cause symptoms similar to dementia, and it can make an existing dementia worse.
Each individual, each family, and each caregiver is different. You may never experience many of these problems. The problems you will face are influenced by the nature of the specific disease causing the dementia, by your personality, by the personality of the person who has dementia, and, often, by other factors, such as where you live.
Most illnesses that cause dementia do their damage gradually, so the effects are not seen suddenly, as they are when someone has a major stroke or head injury. Consequently, the behavior of a person who has dementia often seems puzzling. It is not always evident that many of the noticeable symptoms (changes in personality, for example) are the result of a disease, because the person often looks well.
Researchers have found that our brain stores and processes memories of emotions differently from memories of fact. It is possible for the dementia to damage one without damaging the other as much. Old social skills and the ability to make customary social remarks are often retained longer than insight and judgment. Thus, a person may sound fine to the doctor but in fact be unable to care responsibly for himself.
When you speak to a person, he must hear you: the first step in the processes of communication is sensory input. The ability to repeat immediately what is heard may be retained, but the next step, to remember what was said, at least temporarily, is often lost in people who have dementia. If the person cannot temporarily recall what you said, he cannot respond. Often a person can understand or recall only part of what was said and will act on only that part.
Use your common sense and imagination. They are your best tools. Adaptation is the key to success. If a thing cannot be done in a certain way, ask yourself if it must be done that way. For example, if a person can eat successfully with his fingers but cannot appropriately use a fork and spoon, don’t fight the problem; serve as many finger foods as possible. Accept changes. If the person insists on sleeping with his hat on, this is not harmful; go along with it. Cognitive losses are uneven: accept what does not seem logical.
Try to establish an environment that allows as much freedom as possible but also offers the structure that people who have dementia need. Establish a regular, predictable, simple routine for meals, medication, exercising, bedtime, and other activities. Do things the same way and at the same time each day. If you establish regular routines, the person may gradually learn what to expect. Change routines only when they aren’t working. Keep the person’s surroundings reliable and simple. Leave furniture in the same place. Put away clutter.
Avoid talking about the person who has dementia when he is nearby—and remind others to avoid this, too
Remember to talk to the person directly. Speak calmly and gently. Make a point of telling him what you are doing and why. Let him have a part in deciding things as much as possible. Avoid talking about him...
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Have an ID necklace or bracelet made for the person who has dementia and consider a wearable tracking device. Include on it the nature of his disease (for example, “memory impaired”) and your telephone number. Th...
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Keep the person active but not upset. Families often ask if retraining, reality orientation, or keeping active will slow or stop the course of the disease. They may ask if being idle hastens the course of the disease. Some people who have dementia become depressed, listless, or apathetic. Families often wonder whether encouraging such a person to do things will help him to function better.
Mrs. Baldwin often cannot remember the words for things she wants to say, but she can make her meaning clear with gestures. Her daughter helps her by saying, “Point to what you want.”
Leave familiar objects (pictures, magazines, television, radio) in their usual places where the person can see them easily. A tidy, uncluttered house will be less confusing to an impaired person, and misplaced items will be easier to find. Putting labels on things occasionally helps. Labeling drawers “Mary’s socks,” “Mary’s nightgowns” may help.
People with brain diseases often become excessively upset and experience rapidly changing moods.
Emotional overreaction is common when a situation overwhelms the limited thinking capacity of a person who has dementia.
The best way to manage catastrophic reactions is to stop them before they happen. The things that trigger these outbursts vary from one person to another and from one time to another, but as you learn what upsets your family member, you will be able to reduce the number and frequency of outbursts. Some of the common causes of catastrophic reactions are needing to think about several things at once (for example, all the tasks involved in taking a bath) trying to do something that the person can no longer manage being cared for by someone who is rushed or upset not wanting to appear inadequate
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Anything that helps remind the person who has dementia about what is going on, such as following familiar routines, leaving things in familiar places, and having written instructions (for people who can manage them), can help to reduce catastrophic reactions. Because catastrophic reactions are precipitated by having to think of several things at once, simplify what the person has to think about. Take things one step at a time, and give instructions or information step by step. For example, when you help a person bathe, tell the person one thing at a time. Say, “I’m going to unbutton your
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Take things one step at a time, and give instructions or info...
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Give the person who has dementia time to respond. He may react slowly and become upset if you rush him. Wait for him. If a person is having frequent catastrophic reactions, try to reduce the confusion around him. This might mean having fewer people in the room, having less noise, turning off the television, or reducing the clutter in the room. The key i...
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Simplify the environment to reduce the number of signals the impaired brain must sort out
As a person who has dementia becomes upset, his ability to think and reason temporarily declines even more. It is useless to argue with him, explain things to him, or even ask him to complete a task when he is in the grip of a catastrophic reaction. Arguing, explaining, or restraining him may make things worse. Help him calm down and relax so that he can think as well as possible. Take him away from what upset him, if possible.
You may lose your temper with a person who is having catastrophic reactions or is unable to do what seems like a simple task. This usually will make the person’s behavior worse. Losing your temper occasionally is not a calamity; take a deep breath and try to approach the problem calmly. The person will probably forget your anger much more quickly than you will. Try not to express your frustration or anger to the person who has dementia. Your frustration will further upset him when he cannot understand your reaction. Speak calmly. Take things one step at a time. Move slowly and quietly.
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When a person becomes agitated, stop whatever is upsetting him and let him relax
When a person becomes agitated, immediately stop whatever is upsetting him and let him relax. Do not continue to push him.
People who have dementia communicate better when they are relaxed. Try to appear relaxed yourself (even if you have to pretend) and create a calm environment. Never rush the person who is trying to make himself understood.
Here are some additional ways to communicate nonverbally: Remain pleasant, calm, and supportive. (Even if you feel upset, your body language will help to keep the person calm.) Smile, take the person’s hand, put an arm around his waist, or in some other physical way express affection, if you know this helps. Look directly at him. Look to see if he is paying attention to you. If he uses body language to signal that he is not paying attention, try again in a few minutes. Use other signals besides words: point, touch, hand the person things. Demonstrate an action or describe it with your hands
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A person who has dementia loses the uncanny ability normal individuals have for judging the passage of time. He may repeatedly ask you what time it is, feel that you have left him for hours when you are out of sight for only a few minutes, or want to leave a place as soon as he has arrived. It is not hard to understand this behavior when you consider that, to know how much time has passed, one must be able to remember what one has done in the immediate past. The person who forgets quickly has no way to measure the passage of time.
Families often observe that the person can do something one time but not another time. “In the morning my mother does not need as much help as she does in the evening.” “My wife can use the bathroom alone at home, but she insists she needs help at our daughter’s house.” “My husband does not get as angry and upset at day care as he does at home. Is this because he is angry with me?” “Bill said a whole sentence yesterday, but today I can’t understand a thing he says. Was he trying harder yesterday?” Fluctuations in ability are common in people with diseases that cause dementia.
As a person begins to develop a disease that causes dementia, she may begin to have difficulty managing independently. Surprisingly, 20 percent of people who have dementia are living alone. You may suspect that the person is mismanaging
her money, worry that she should not be driving, or wonder if she should be living alone. People who have dementia often appear to be managing well, and they may insist that they are fine and that you are interfering. It can be difficult to know when you should take over and how much you should take over. It can also be painful to take away these outward symbols of a person’s independence, especially if the person adamantly refuses to move, to stop driving, or to relinquish her financial responsibilities. One reason these changes are so difficult is that they reflect a loss of independence and
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The time may come when you realize that your parent or spouse can no longer drive safely. While some people will recognize their limits, many are unwilling to give up driving. As a group, people who have dementia and continue to drive are much more likely to have accidents than other people their age. For most experienced drivers, driving is a skill so well learned that it is partly “automatic.” A person can go back and forth to work every day with her mind on other things—perhaps answering calls or listening to music. It does not take much concentration to drive, but when the traffic pattern
suddenly changes, we can rely on our mind to immediately focus on the road and respond swiftly to the crisis. Because driving is a well-learned skill, a person who has dementia can still appear to be driving well when she is not really a safe driver. Driving requires a highly complex interaction of eyes, brain, and muscles and the ability to solve complicated problems quickly. A person who is still apparently driving safely may have lost the ability to respond appropriately to an unexpected problem on the road. She may be relying entirely on the habits of driving and may be unable to shift
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The “grandchild test” is one way to decide whether a person should still be driving. If you would not let a person drive your child or grandchild, then she should not be driving.
The individual who has dementia is still a person, and her participation in plans and decisions that involve her is important, unless she is too severely impaired to comprehend what is happening. People who have been hoodwinked into a move may become even angrier and more suspicious, and their adjustment to the new setting may be extremely difficult.
If people who have dementia move before their illness becomes severe, they often adjust better to their new environment
Put away dangerous items such as medications, kitchen knives, matches, power tools, and electric gadgets like hair dryers that, if misused, could start a fire or hurt the person who is impaired. Safely lock away insecticides, gasoline, paint, solvents, cleaning supplies, soap pods, and the like—or, better yet, get rid of them. People with even a mild impairment may use them inappropriately.
Be sure your smoke detectors work and that the batteries are fresh. Simplify, simplify, simplify. Clutter means the person who has dementia must try to think through more things, and this leads to accidents. Get rid of clutter, especially on
stairs, in the kitchen, and in the bathroom. Think about where the person walks. Remove clutter that he must walk around. Put away low furniture and throw rugs that he could trip over. Remove any extension cords that are where the person could trip on them. A neat house with less clutter also makes it easier for you to find things that the person with an impairment misplaces or hides.
The bathroom is usually the most dangerous room in the house. Hazards include falls, poisons, cuts, and burns. Lock up medications and put other items like shampoo—substances that the person might eat—in a cabinet with a childproof lock. Replace the glass drinking glass with a plastic one that won’t break. Lower the temperature on the water heater to prevent scalds. Make hot radiators inaccessible.
People who have dementia may try to cook, or “just heat up something,” especially at night, when you may be sleeping. They may put an empty pan on a hot burner. This is a serious fire hazard. They may also hide things under the stove burners, which can start a fire. You can take several steps to decrease these risks. Begin by taking the knobs off the stove when you are not using it. You can also have
someone install timers on the stove and other appliances, such as the microwave, that will turn them off after a certain period of time. You can have a switch installed on the stove or any other electrical appliance so that you can turn it off when you are not using it. It is wise to put this switc...
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Don’t keep medications out in the open. Get in the habit of storing them away where you are sure the person who has dementia cannot get to them. If he takes his medication and then forgets that he took it, sees the bottle, and ta...
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Can the person lock himself in a room so that you cannot get in? Remove the lock, take the tumblers out, and replace the knob or securely tape the latch open. Stairs are dangerous. The dementia causes the person to become unstable and to pay less attention to steps. He can easily get “turned around” and fall down the steps, especially at night. Check the handrails on stairs: be sure they are sturdy.
Reduce the clutter in the person’s bedroom, but make the bedroom welcoming and leave some drawers that the person can rummage through. You may want to lower the bed so that if the person falls, he will be less likely to be injured. Bed rails are available from medical supply houses and drugstores, but people often try to climb over them and put themselves at risk of falling.
