P. Murali Doraiswamy, M.D.

P. MURALI DORAISWAMY, M.D., a renowned expert on brain longevity and mental health, is head of Duke University’s Biological Psychiatry division and a Senior Fellow at Duke’s Center for the Study of Aging. As Director of Psychiatry Clinical Trials at Duke for nearly ten years, he received numerous awards for his work as an investigator on landmark studies. The author of more than two hundred scientific articles, Dr. Doraiswamy has served as an adviser to the Food and Drug Administration, the American Federation for Aging Research, the National Institutes of Aging, and the World Health Organization, as well as leading Alzheimer’s medical journals and advocacy groups. His research has been featured in The Wall Street Journal, USA Today, and The New York Times, and on CBS News, The Today Show, NPR, and the BBC.


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The Alzheimer's Action Plan: Brain Health Tips (part 2)

Tips on prevention and treatment of memory problems from two of America's leading experts.

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The Alzheimer's Action Plan: Brain Health Tips (part 1)

Tips on prevention and treatment of memory problems from two of America's leading experts.

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P. Murali Doraiswamy, M.D. on The Alzheimer's Action Plan

Renowned expert on brain longevity and mental health, head of Duke University's Biological Psychiatry division and Senior Fellow at Duke's Center for the Study of Aging, P. Murali Doraiswamy, M.D. discusses prevention, early intervention, and care of Alzheimer's in his book, The Alzheimer's Action Plan.

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An Excerpt from The Alzheimer's Action Plan, Chapter 18: Questions & Answers...
 
Five Versions of “Is it Alzheimer’s?”
 
If doctors sometimes have a difficult time diagnosing Alzheimer’s correctly, it’s even harder for family members.
 
1.  “Isn’t it normal to get forgetful when you retire?” –A 65 year-old-man whose wife is worried about his memory  
 
Our memory begins to decline before retirement age, but most people don’t start worrying about memory loss until they retire. Retirees may no longer dismiss their memory lapses as simply the result of being busy and stressed out. Also, they may start wondering if this is the beginning of age-related memory loss. Some people retire because of difficulty with their memory or keeping up at work.
 
Once you retire and no longer have deadlines at work, you may think it’s okay to be forgetful. Actually, the need for a good working memory doesn’t change with retirement. You may choose to stop remembering certain facts or figures that are no longer important to you, but you’ll need to be ready to absorb new information for a fulfilling retirement.  Retirees and their spouses are well-advised to stay involved in stimulating, challenging and meaningful activities.
 
So how do you decide what is normal forgetfulness and what isn’t?  First, listen to your wife (always good advice). If she notices a significant change in you or complains that you are repeating yourself more than usual, assume she isn’t exaggerating or nagging.  You, like others, may “forget” or dismiss mild changes in recent memory because it is understandably uncomfortable for you to think about.
 
Second, ask yourself some difficult questions:
  • Have you been more frustrated trying to remember what happened that morning or that minute?
  • Are activities that were once easy for you now more difficult or taking longer?
  • Are you having more trouble planning, organizing, or paying bills?
  • Do you find yourself double-checking yourself more?
  • Are you avoiding situations because you are afraid of making mistakes?
  • Are memory lapses making you more irritable, frustrated or unsure of yourself?
  • Are you misplacing or losing things more than in the past? (Keys and glasses don’t count—we know they enjoy a good game of hide and seek.)
  • Is it harder for you to follow directions or learn your way to a new place?
  • Are you getting lost in familiar places?
If so, it may be time for you and your wife to seek professional advice from your doctor.  As with any serious medical condition, it’s never a good idea to ignore real memory problems, as much as we’d like them, instead of our keys, to disappear.
 
2.  “Isn’t it true that taking too many medicines at one time can make the doctors think you have Alzheimer’s?” –A 75 year-old-husband who is worried about his wife
 
More than 50 medications cause, albeit rarely, confusion or memory loss.  Other medications, particularly at high dosages and particularly in older people, can cause drowsiness, disorientation or forgetfulness. Your wife may appear sedated or sleepy if the dose of even one medicine is too high for her body’s changing ability to use, absorb and eliminate the medicine. Certain combinations of medications or the combination of medicine and certain chronic diseases can also disrupt thinking. This is why doctors review a patient’s prescriptions and over-the-counter medicines as part of any evaluation of a memory problem. And that’s why patients or their care providers must give each of their doctors their complete list of medications.
 
On the other hand, Alzheimer’s disease may be causing your wife to dislike or distrust medicines and to insist that the medicines slow her down. If her mental condition were solely related to her medications, the changes would have come on suddenly and would disappear when the medicines are adjusted.  People who are overmedicated generally look sleepy all the time. People with Alzheimer’s are actually fairly alert and vigilant, until the disease becomes advanced.
 
Even if your wife has Alzheimer’s, careful review and monitoring of her medicine cabinet is essential to help her function at her best.  Her medicines may be necessary for other conditions, but perhaps the dosage or time of day she takes them can be adjusted to cause fewer problems.  As people age, the same dose of a medicine they have taken for years can become too much for their systems.
 
Moreover, people with Alzheimer’s can be very sensitive to the effects of medicines, especially antihistamines and some of the older antidepressants. Some drugs also work at cross purposes with Aricept or other medicines prescribed for Alzheimer’s disease.  Your pharmacist may be the first person to check with about medication interactions.
 
If your wife needs to take fewer pills, her doctor will tell you how to decrease the quantity slowly. If you are unsatisfied with the doctor’s advice, check with another doctor or pharmacist.  Knowing a lot about your wife’s medicines, and what problems to watch for, will make you her best advocate.
 
3.  “Should my wife be tested for Alzheimer’s just because she got lost driving?” –A 68 year-old husband
 
Everyone gets lost sometimes, particularly if they are under stress or quite preoccupied. To determine if getting lost is a sign of Alzheimer’s ask:
 
  • Does she get lost in new or familiar areas? New locations can be challenging to the best of navigators. But people with Alzheimer’s get lost in familiar areas also.
  • How often does she get lost? More than rarely is dangerous and may be a sign of Alzheimer’s.
  • Is she quickly able to recognize where she is and find her way? People with Alzheimer’s cannot.
  • Has her behavior, personality, thinking, communication or judgment changed in other ways? By the time a person is getting lost as a result of Alzheimer’s disease, they are usually showing signs of memory loss in other areas of their lives.
Don’t hesitate to help your wife get a thorough medical evaluation to determine the cause of her confusion.  Even if she does receive a diagnosis of Alzheimer’s, it doesn’t necessarily mean that her license will be revoked, though she may need to stop driving to protect her safety and the safety of others.
 
4.  “Can grief cause Alzheimer’s?  My mom is so confused and forgetful since my dad died.” —A daughter in her 40s
 
In anyone, grief can cause a range of powerful physical and emotional reactions, including confusion and disorientation. Grief does not cause Alzheimer’s, but it may unmask it. Your dad may have been helping your mom more than anyone realized, and after he died her impairments came to light.  He was probably meeting her day-to-day needs, making sure she understood what was going on in the world around her, and filling in the gaps in her memory or reasoning ability. Thanks to your dad, she felt normal and even successful.
 
So losing him is like losing a part of her ability to think, plan and remember. She’s unfamiliar with asking others for assistance, knowing what she might need, or having others help her.  Even if your parents weren’t that close, they may have worked out useful routines, as her subtle memory lapses became problematic.
 
People with mild to moderate memory disorders are extremely sensitive to changes in their routine and in the people around them or their environment.  The absence of a primary care provider and lifelong partner is probably the most disruptive change of all.  Your mom will generally be more confused, disoriented, fearful, or frustrated and in need of reassurance. She will have a lower threshold for any stress or further changes in routines.
 
5.  “Isn’t it possible my wife was misdiagnosed with Alzheimer’s when it is just depression?” –A husband in his 60s
 
Depression is a serious and treatable condition so we don’t tend to dismiss symptoms as “just depression.”  Depression by itself can cause changes in mood, thinking, memory and behavior. Depressed older adults may not try as hard on tests that assess memory and thinking. If you question your wife’s diagnosis, by all means get a second opinion from a psychiatrist or psychologist who specializes in depression and Alzheimer’s.
 
A first episode of serious depression late in life may be a sign that Alzheimer’s is just around the corner. Apathy, loss of initiative, inability to start or finish projects, or withdrawing from hobbies or activities may be your wife’s response to feeling forgetful and fearing she will make mistakes.
 
Even if your wife’s mood and behavior are related to Alzheimer’s, she needs a thorough evaluation to sort out her illnesses. She can be treated for both depression and Alzheimer’s simultaneously, though most specialists will suggest treating the depression first. Fortunately, the depressive symptoms often respond well to antidepressant medication, supportive therapy and the addition of enjoyable activities. Ignore cavalier suggestions like “of course she is depressed – wouldn’t you be depressed if you had Alzheimer’s?”  The quality of both her life and yours can be enhanced with the accurate diagnosis and treatment of both serious conditions.
 
The Hows and Whys of Testing
 
 6.  “How do you get someone to go to the doctor when he thinks nothing is wrong?” –A 45-year-old daughter
 
 Most people with a memory disorder are not good judges of their own behavior.  For example, people with Alzheimer’s don’t know they repeat themselves a lot, because they genuinely don’t remember what they just said.
 
Your dad may not be intentionally stubborn or even in denial.  Instead, he may actually sense something is scary, wrong or different with his thinking and is trying to blame his confusion or mistakes on others. He may complain that people are simply asking too much of him or grumble that all these gadgets (toasters, microwave ovens, televisions–you fill in the blank) are too darn complicated to use anyway.
 
There are many successful approaches to getting medical help for a resistant, memory-impaired relative. You may need to resort to being cunning, but when it comes to Alzheimer’s, the end (proper medical evaluation and care) justifies the means.  (And don’t forget that cunning is not the same as conning.) Here are some strategies to try. You know your father, so pick which you think will work best for him.
 
  • Offer to take him to the doctor about a bothersome complaint he has had, such as back pain or fatigue. Point out that new treatments for his ailment may be available.
  • Find a doctor he can trust. Ask someone whom he has always admired, say a neighbor or his lawyer, to recommend a doctor.  Or find a doctor with whom he may have something in common—they graduated from the same college, for example.
  • If your dad has always refused to see a woman physician or a foreign physician, this is not the time to insist he become open-minded.
  • Some spouses suggest to their partner that they both have a physical because they are getting older, for insurance purposes or to plan for their retirement.
Now for timing: Schedule the appointment for when the office is the least busy and when you or a close, observant relative can go with him.  If he has refused to go, don’t tell him until the last minute that it’s time to go. When he asks where he’s going, be matter of fact. Try to slip “doctor appointment” in between “running an errand” and “getting lunch” or “going to the golf course.” Be sure to bring to the appointment all his current prescription and over-the-counter medicines, and recent medical records of tests, procedures or hospitalizations.
 
Before the appointment, alert the doctor or a nurse to your concerns about your dad’s memory, why your dad thinks he’s going to the doctor, and his resistance to discuss his memory. If you are unable to speak to someone before the appointment, you may need to pass the nurse or doctor a note explaining the situation. Avoid discussing your dad’s memory in front of him and let him do the talking during the appointment. Follow up with a phone call to the doctor if necessary, but it’s better to get the message to the doctor before the exam.
 
7.  “Why fight him to go to the doctor when only an autopsy can diagnose Alzheimer’s?” –The 74 year-old wife of man with memory problems
 
It’s true that no diagnosis is guaranteed to be 100 percent accurate, but skilled doctors are finding that their clinical diagnoses are supported by the autopsy about 90 percent of the time. Moreover, autopsies on brain tissue may not reveal any disease that would have been treated differently.
 
The advantages of diagnosing the cause of memory problems early and accurately are numerous. For one, conditions other than dementia, including congestive heart failure or rarely a tumor, can cause memory problems. Certain medicines or combination of medicines impair memory, and when they are eliminated or reduced memory function improves.
 
You want to know if it is Alzheimer’s, because a thorough medical evaluation can identify the skills and abilities your husband has retained or lost. If you understand the level of his impairment, you are more likely to give him the help he needs. You will also learn how much he can and should do on his own.
 
If it is Alzheimer’s you need to know because:
  • People with Alzheimer’s function better when they are getting  medical and emotional support designed to address their specific needs.
  • Starting treatment early with Alzheimer medications is important to maintain cognition and function.
  • Alzheimer’s shortens the lifespan and requires couples to adjust their plans for their future.
  • Understanding Alzheimer’s helps couples decide together how to  best preserve their safety and assets.
  • A good physician can encourage couples to decide how to handle sensitive issues, such as who should manage family finances and whether the spouse with Alzheimer’s can drive. Getting professional guidance on these emotional questions takes some of the burden and blame off the healthy spouse.
  • While they can still make reasoned judgments people with Alzheimer’s need time to think about how they want to live and time to talk with their family about what is important to them.
  • Couples may have many things they want to say to each other and do together before disability limits their options.
  • Many people with early Alzheimer’s are relieved to learn that their memory difficulties are not their fault, that trying harder won’t necessarily lead to success, and that it’s not a sign of weakness to ask for help.
8. “What difference does it make if my aunt doesn’t know the day and date?  She’s retired.” —A 51-year-old man
 
Doctors ask people with memory problems to name the date or day of the week to get a sense of the person’s orientation and whether it has changed since the last visit. Doctors also ask patients what town they are in, who the president is, and other seemingly trivial questions. 
 
You may think the doctor is making unfair assumptions about your aunt’s general thinking ability just because she can’t come up with these specifics. However, this and other information helps the doctor and your aunt determine if her needs for help have changed, from medications to more detailed calendars and digital clocks in her home. Eventually, the specifics of day and date won’t be nearly as important for her as distinguishing breakfast time from dinner time or knowing how to dress appropriately for the weather and season.
 
At these later stages, digital clocks and calendars won’t help, as she will neither remember to look at them nor what they mean. You may not know the day and date at all times yourself, but you know where to look for that information.  It’s hard for families to believe, but giving people with Alzheimer’s more technological cues can backfire by making them feel bad that they can’t use the new tools. Instead, let your aunt preserve her self-esteem by accepting her well-practiced excuses, such as “I’m retired—I don’t keep track of those things anymore.”
 
9.  “What kind of doctor specializes in memory problems?  Is there someplace I can send my husband where they are testing medicines for memory loss?  Can he stay at the University’s clinical center while they study him?” –A woman in her 70s
 
Doctors who specialize in memory problems are neurologists, psychiatrists or geriatricians, and they are usually associated with major medical centers or memory disorder clinics. They would work with but not replace your husband’s primary care doctor.
 
Although many centers and clinics do test medicines designed to treat memory disorders, they don’t have study participants stay at their centers.  Doctors have learned that people with Alzheimer’s function worse in new or unfamiliar environments, including hospitals, where they are at risk of becoming more confused or even delirious. Much of what we have learned about Alzheimer’s is from research done on animals or tissue cultures, not just from studies on people with established Alzheimer’s disease.
 
That said, there are out-patient studies, called clinical trials, of Alzheimer’s medications that your husband may be able to enroll in. If he is qualified to participate, he would receive either the medicine being tested or a so-called placebo pill that has no effects. You would bring him periodically to the clinic for check-ups, where you would also be asked about his memory and behavior.  Unfortunately, most of the medicines now under review are only for people with mild cognitive impairment or early stage Alzheimer’s.
 
If what you also need is a break from caring for your husband, call your county aging agency or nearest Alzheimer’s Association for advice on finding assistance. Three good options for respite care exist:
  • a day program for people with Alzheimer’s
  • a live-in facility that takes people with dementia for short stays
  • a caregiver to come to your home, so you can get out for a few hours on a regular basis.
When you take a break from your husband, you are helping both of you. Research studies have shown that family caregivers need time away from their relative, to protect their own health and retain their capacity and patience to provide the best care.
 
10.  “Is it worth it to get a second opinion?  The doctor said my dad’s CAT scan was normal, but he just isn’t himself anymore.” —A 40 year-old-son
 
Absolutely.  First, no single test including a CAT scan, which is like a three-dimensional X-ray, can diagnose Alzheimer’s. CAT scans actually detect rare, serious or remediable problems that may be mistaken for Alzheimer’s, such as tumors or damage from head injuries.
 
The red flag in your question is “he just isn’t himself anymore.” A close family member’s observations of changes in a person’s functioning, mood, behavior or personality, and a thorough neurological and physical examination are usually more predictive of early memory impairment than imaging or laboratory studies.
 
Ask yourself about changes in your dad, separate from any physical ailments. For example,
  • Does he refuse to participate in activities that once were easy for him? 
  • Have you noticed changes in his personality? Is he more irritable, easily frustrated, suspicious, worried, fearful or withdrawn?
  • Does he check himself more, such as checking if he turned off a light or packed his golf clubs?
  • Does he repeat himself, ask more questions or request more reminders?
  • Did these changes develop subtly and slowly, making it difficult to pinpoint when they began?
  • Is he making poor decisions or showing a lack of his usual judgment or tact?
  • How many people in the family are noticing these changes?
Your answers will probably confirm your initial intuition that you need a second opinion. Asking your dad to undergo a comprehensive evaluation of his memory may be difficult. But an early and accurate diagnosis will help your dad get the help and extra protection he needs. You can feel proud that you put the stop light in place before an accident happened.
 
Understanding How Alzheimer’s Changes Personality
 
The problems might seem funny, if only they weren’t so real.
 
11.  “How can she complain about having nothing to do and get none of the housework done when she is home all day?”  –A man in his 60s whose wife has early-onset Alzheimer’s
 
People with Alzheimer’s have trouble with what is called “executive function” or the ability to plan a series of steps, initiate those steps, and then organize, sequence and stay on task. Organizing their approach to housework or, eventually, even to getting dressed and other personal activities becomes more difficult over time. Part of the problem is that their sense of elapsed time is off-kilter, so your wife may look out a window or dust the same table for hours, then look up with surprise when you return from work.  What was an eight-hour day for you may seem like eight minutes or eight days to her.
 
You want to come home to dinner and a clean house and your wife wants to feel like a contributing member of the family, much as she did before her illness. But she may have lost the ability to do the work that she once did easily. If her dementia is mild, notes and telephone reminders from you may be all she needs to get through her day. But as the disease progresses, she will need someone, such as a paid companion, to help her do the housework and to keep her safe.  If she previously enjoyed her homemaker role, it is worth finding ways to help her do these chores.
 
As the disease progresses, she will become tired and frustrated more quickly.  Thinking and staying on task, no matter how simple the task looks to you, will easily fatigue your wife. Without a structured predictable routine, which means doing the same activities at the same time and in the same order each day, with regular breaks, she may become anxious and agitated.
 
12.  “Why do people with Alzheimer’s make up stories or just tell outright lies?  My wife tells everyone I am having an affair with our maid.” —A 73-year-old husband
 
Accusations of spousal infidelity and of family members stealing are the most common delusions of both men and women with dementia.  Why do they make these false accusations? In the case of your wife, she probably has an irrational fear that you will abandon her in a world that no longer makes sense. She can’t keep in her memory why the housekeeper is there or a female neighbor has dropped by, so she comes up with stories that make sense to her at that moment.
 
You might think that she is telling lies or stories to aggravate you, insult you, or make you look bad to family and friends.  But her impairment prevents her not only from remembering that you are faithful, but also from carrying out any sort of plan, including malicious ones.
 
Arguing or attempting to be logical with her will not help.  She will forget what you said and remember only that you were angry with her. As upsetting as her accusations are, respond calmly and casually to them. Dredge up some old lines from your courting days, like “you are the only woman in my life  – you can depend on me.”  Distract her with a ride in the car or a request to help you in the yard or the kitchen.
 
When she accuses you falsely in front of others, say to your guests, “Well, that’s a tale for another day” then distract her by showing her something or walking with her. Offer your friends a bargain: “I’ll agree to believe only half of what I hear about you if you do the same for me!”
 
13. “Does Alzheimer’s increase your sex drive?  My husband demands sex right after we have sex.” —A 61-year-old woman
 
No, Alzheimer’s by itself doesn’t increase or decrease sex drive.  Your husband probably forgets that he just had sex. He may also forget what is proper behavior in the bedroom or that he needs to consider your feelings. Alzheimer’s or frontotemporal dementia may have eroded his inhibition, causing him to act inappropriately or to use crude sexual language. In addition, his need for intimacy may be greater than yours because he is afraid of being abandoned. Or he may just be perseverating (getting an idea stuck in his head) about sex.
 
You won’t be able to convince your husband that “enough is enough.”  Instead, sleep in another room or stay out of his sight until he is asleep.  Also, both of you might enjoy less intimate forms of touching, such as foot rubs or head massages. As difficult as it is, refrain from telling him that his demands are crazy or inconsiderate.  He will understand your strong negative feelings, but not know how to make right.  Feel free to discuss your problem with an Alzheimer’s Association help line volunteer or members of a support group.  You may be surprised by how many caregivers have similar experiences.
 
14.  “Why are women with Alzheimer’s so hard on their husbands and so nice to everyone else?  She even accused me of stealing her underwear.” —A 72 year-old husband
 
If it is any consolation, men with Alzheimer’s can be mean to their spouses as well. People with Alzheimer’s get angry for different reasons, including feeling scared, frustrated, and resentful of needing help or losing control. They almost always take out their anger on the person nearest and dearest to them.
 
Your wife can no longer remember all that you do and have done for her. Because of her own disabilities, she feels that her needs are not being met. You are her care provider, so her problems must be your fault. As she struggles to make sense of a topsy turvy world, she will say things before thinking about your feelings.
 
The hardest part about being married to someone with Alzheimer’s is to separate the disease from the person.  You will both be better off if you avoid taking personally her mean behavior. Be mad at the disease together—not angry at each other.
 
Although it seems odd to the spouse who has just been yelled at, many people in early to middle stages of Alzheimer’s will behave appropriately and pleasantly during brief social visits, if they are well rested. Instead of resenting her ability to be nice to everyone else, try to appreciate it.  You need your friends to enjoy her, as both of you will benefit if you keep up your social contacts. Many husbands like you crave normal adult conversation when their wives are no longer capable of it.
 
15.  “Why does my wife not care about how she looks anymore?  She wears the same outfit every day and won’t even wash it.  She used to be a snappy dresser.” —A 66 year-old husband
 
Most likely she does care, and remembers being a snappy dresser.  However, hygiene and dress inevitably deteriorate with the progression of dementia.  Making and carrying out any decisions becomes very tough, and that includes picking out an outfit and putting it on. Since her long-term memory is better than her short-term recall, she remembers only that she always wears clean clothes—not that she might need to change her outfit.
 
For her to continue to look clean and tidy, someone will need to help her to dress and manage her wardrobe. Making that a priority will help her and you feel better, since you are both accustomed to her looking really nice.  Go through your wife’s closet and remove everything that is out of season, uncomfortable, and difficult to put on. Hang things that go together on the same hanger, and don’t forget the favorite scarf or piece of jewelry. If she needs new clothes, ordering from a catalog, even if it means returning things that don’t fit, may save time and frustration. Perhaps a woman friend might enjoy helping you and your wife with these wardrobe tasks and your wife might welcome the attention. 
 
Your daily tasks will include reminding her to take off her pajamas or dirty clothes in order to put on the clean ones. Discreetly toss dirty clothes in the wash, perhaps while she is in the bathroom. Lay her clothes on the bed each day in the order she puts them on, such as underwear on top. You can give her two outfits to choose between. Eventually, she may prefer one type of outfit, such as an attractive sweat suit, that is comfortable and easy to put on.
 
Let her do as much as she can with encouragement, perhaps showing her how nice she looks in the mirror if she can still recognize herself. When she can no longer fasten buttons or tie her shoes, don’t reveal your disappointment. How you take over the task will make a big difference in how she feels about herself. Compliment her often on her retained good looks. Remind her that she is still “the belle of the ball.”
 
16.  “Is turning against your grandchildren a symptom of Alzheimer’s?  Mom has always taken care of my kids while I work, but now they say she’s mean and uninterested in them.” —A daughter in her 30s
 
Turning against people, including family members, is not a specific symptom of Alzheimer’s disease. But if she has Alzheimer’s, it has shortened her fuse and made it hard for her to be polite and caring. She is frustrated, because she is forgetting what she is supposed to do, yet wants to do things right. Your mom loves the children in the same way she always has but feels overwhelmed trying to care for them. It’s probably time to find a new sitter or someone to help her watch the kids.
 
Babysitting requires far more patience, vigilance, thinking, memory, attention and planning than most people with even moderate Alzheimer’s disease can muster. Rational arguments or pleading with your mom to act like a responsible grown-up won’t work. Your mother’s judgment is not what it once was. She remembers she is an adult, but her behavior may look childlike.  Your children respond in kind and the tension escalates.
 
Your children can be taught to respond appropriately to their grandmother, but they need your help. Get your children and mother together for brief visits to preserve the warm relationship they once had. After your mom no longer has the responsibility of caring for the children, with your encouragement and direction her attitude toward them may improve significantly.
 
17.  “Does personality change with memory loss?  My mother was much more outgoing and sympathetic to my problems before and now she doesn’t seem to care about anyone but herself.” —A 38-year-old daughter
 
Sadly, personality changes are often the first signs of Alzheimer’s disease. Your mother may have lost the ability to understand how you feel, even though she still loves you.  She may be scared of making mistakes in social situations, so she withdraws to preserve her self-esteem. It’s all she can do to understand and monitor her own feelings and reactions. Keep in mind when she seems uncaring that it’s the disease talking.
 
Your mother’s self-centeredness is hard on you. Talking to others who appreciated her qualities will help. You may also want to find someone in your family who can fill in for your mom as your older, wiser guide. Consider joining a support group or talking to an Alzheimer’s Association counselor for additional support.  Her personality changes may come faster than you can cope with on your own.
 
Just as she helped you when you were younger, now you can offer her support. You don’t have to become her mother nor will she ever be your child, but you can take satisfaction in helping her meet her needs now, which some children describe as “full circle care.” Part of that is accepting where she is now. She probably does not know that she has withdrawn, and telling her won’t help. Instead, remind her that she’s a great mom and that you appreciate her. Enjoy what she has to offer, even if it’s just the memory of the mother she was.
 
18.  “Why won’t my mother make even the simplest decisions about what she wants to eat in a restaurant?” —A 47 year-old-daughter
 
It’s hard to watch a confident mother become so indecisive.  She would like to be able to make decisions, but because of her disability she can’t remember the options long enough to decide between them. You may think she has just given up and doesn’t care any more for her mother-daughter lunches, but she needs and enjoys them now more than ever.
 
Going out to lunch with a person who has Alzheimer’s is more enjoyable if you follow slightly unusual rules of etiquette. If your mother doesn’t answer a server’s question fairly quickly, just answer for her. Suggest a meal that you know she likes and that she can eat comfortably in public. She may love salads, for example, but if she has trouble getting all that lettuce dripping with great dressing into her mouth, save it for home.  If you are unsure what she’ll want to eat, ask her to choose between two simple choices, but don’t be surprised if she can’t even make that decision.
 
Consider bringing along a small card that states, “My companion has a memory problem.  Please address your questions to me,” and slip it to the server when he or she seats you.
 
Order her water right away, as many medications that older people take dry out their mouths. Ask her discreetly a couple of times if she wants more to drink or if she needs to use the bathroom. To make it easier for her to eat, you may also have to arrange or cut up her food, perhaps setting some aside if the serving is large.
 
Taking care of her like this in public will feel odd at first, but she needs help and may even appreciate it. You will probably have to direct the conversation as well, by pointing out people or items of interest in the restaurant, telling her stories from her past, using humor frequently to lighten the mood, and focusing on having fun in the moment.
 
19. “Why do people who were such gifted artists like my wife just stop painting?  She just got Alzheimer’s, but her hands and eyes work fine.” –A 73 year-old-husband
 
It’s very difficult for family members to watch the people they love give up a profession or hobby that once practically defined who they were. If it’s any comfort to you, many great artists, writers, and crafts persons have responded to the onset of Alzheimer’s in much the same way. The good news is that you can probably coax your wife to find another way to express herself.
 
Your wife, like many artists with Alzheimer’s, may have stopped painting because she perceives that the quality of her art is not up to her well-remembered standards. Work that once came naturally to her may now prove difficult and frustrating, as her sense of perspective, and her ability to plan and carry out a painting, may be off.
 
Don’t expect her or push her to continue her painting, if it no longer brings her pleasure. Families in your situation have had better success finding other creative outlets for their loved ones. She might enjoy working with clay, making collages, or trying simple computer graphic games or even arranging art work or photographs for scrapbooks.  Inquire at a local adult day center or senior center about art therapists, to help her explore a new medium. Don’t give up – she may thrive when she finds a new way to express her remaining creative talents.
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Living Well After an Alzheimer's Diagnosis

P. Murali Doraiswamy, M.D., and Lisa P. Gwyther with Tina Adler
St. Martin's Press

Previously published as part of THE ALZHEIMER’S ACTION PLAN. What would you do if your mother was having memory problems? Five million Americans have...


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The Alzheimer's Action Plan

P. Murali Doraiswamy, M.D., and Lisa P. Gwyther, M.S.W., with Tina Adler
St. Martin's Griffin

What would you do if your mother was having memory problems? Five million Americans have Alzheimer’s disease, with a new diagnosis being made every...


Available In:

Book eBook
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