Dementia

* Because Donald’s family is well-known for its retail stores, Julia asked that their names be changed.

 

Julia’s 83-year-old husband Donald* has Alzheimer’s disease.  Julia goes to a support group for caregivers of Alzheimer’s patients at a Chicago hospital.  But she can’t stand it.

The support includes visits from doctors who explain what is happening in the brains of the group members’ loved ones.  Julia, 81, found it all “worthless” because she already knew what Alzheimer’s is.

Nor does Julia feel like she gets moral support in group.  It does not help her to vent about the same problems all the time.  She often feels as though she has to take on the role of group moderator, which is not why she goes there.  Group and the doctors don’t provide the answers to Donald’s disease that she wants because there is no cure.  They don’t address her daily reality  -  that she is slowly losing her best friend and husband of 63 years.

Caregivers watch the tedious mental decline of their loved ones, who lose not only their memory but eventually their ability to care for themselves.  In the final stages of Alzheimer’s, they are reduced to a state where they’re usually unable to communicate coherently, if at all.  They rely on others to bathe and dress them.  They eventually become unable to walk, sit or hold their heads up without support.  Muscles become rigid and reflexes abnormal, causing them to lose the ability to swallow and to control bladder and bowel functions.

And for their families, the experience is more painful because there is no cure, no timetable for its progression, and no understanding of what really causes Alzheimer’s.

 

Alzheimer’s disease is the most common cause of dementia.  It is responsible for 50 to 60 percent of all cases of dementia, according to Alzheimer’s Disease International, and afflicts 2.4 million to 5.1 million Americans, according to the National Institute on Aging.  Most are over age 65, though some get it in their 40s or 50s.  The illness is characterized by symptoms such as memory loss, judgment impairment, personality change and loss of language skills.

Darby Morhardt, a social worker and researcher at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine, says a diagnosis of Alzheimer’s or another dementia can feel “incredibly devastating,” and many view it as a death sentence.  But at the same time, most families and some patients feel relieved finally to know what’s wrong.

“A lot of the time, people have been living with the symptoms for a while before they come to see us,” Morhardt says.  “They’re devastated, but there’s a sense of relief in knowing it has a name.  It confirms for them that there’s something wrong, and they’re not going crazy (thinking there is).”

Four or five years ago, Peggy Dunbar began noticing her 81-year-old mother was more forgetful than normal, repeating herself a lot and even forgetting conversations they’d had only a few minutes earlier.  It made her think there was something wrong other than old age.  After a few months Peggy took her mother to the doctor, who said she had dementia.

Peggy, 61, viewed the news as bittersweet.  “(I was relieved) knowing what it is, but at that point I didn’t know how devastating it could be,” she says.  “At least I know something is wrong, but on the other hand . . . something is wrong.”

 

Each case of dementia or Alzheimer’s is different, and caregivers are affected differently by their new role.  Their needs are as individualized as those of patients.

While Julia doesn’t get much out of group and doesn’t know if she will continue going, Peggy says the support group she attends at the University of Chicago Medical Center has been “a godsend.”  It is a way for her to meet others who are going through what she is going through, and know she is not alone.  It gives her a chance to talk to likeminded people who speak the same “language,” instead of to someone who doesn’t understand dementia or her experiences.

The support group has taught her four important coping skills:  “Don’t argue (with the patient), because you’re not going to win.  Find some humor in it.  Do something for yourself.  And don’t take it personally.  Those are the four things that I got out of the support group,” she says.

Group also introduced Peggy to books about dementia  -  books that have taught her everything she knows about dementia, and which she still rereads even though she knows there aren’t easy answers to her questions about her mother’s illness.

 

Not all dementias are the same, which is important to doctors when treating patients.  But at the same time, for caregivers who deal with Alzheimer’s on a daily basis, the reality goes beyond clinical explanations of what happens in the brain.

Dementia can have many causes, including brain diseases (such as Alzheimer’s), neurodegenerative diseases (such as Parkinson’s disease), and strokes.  Though an exact diagnosis can only be made through a brain autopsy after a patient’s death, and treatments are not curative, having an approximate diagnosis allows doctors and families to create the most effective treatment plan using medicines and cognitive therapy.

For example, Alzheimer’s is characterized by the formation of abnormal particles called neurofibrillary tangles and neuritic plaques that destroy healthy brain cells, according to Northwestern’s Cognitive Neurology and Alzheimer’s Disease Center.  Some drugs may lessen or stabilize Alzheimer’s symptoms temporarily by preventing the breakdown of brain cells or affecting chemicals involved in carrying messages among the brain’s nerve cells, according to the Alzheimer’s Association.  On the other hand, people with vascular dementia  -  caused by one or more strokes  -  can prevent further strokes and thus slow memory loss simply through lifestyle changes.

The scientific explanations of dementia, its causes and possible treatments mean nothing to Julia anymore, not only because she’s heard it countless times but because she needs a cure for Donald, not treatment for the Alzheimer’s symptoms.  “They know what’s happening in the brain,” she says.  “But they don’t have the vaguest clue as to what’s causing (the tangles and plaques) . . . . We’re in the Dark Ages to some extent.”

Like Julia, Peggy finds that knowing the medical terms and technical details of her mother’s illness serves no purpose.  She does not readily remember the exact kind of dementia it is; it may be Alzheimer’s.  But knowing the specific medical terms doesn’t change the reality of their daily life.  “To me, that’s not relevant,” she says.  “What I need to know is that I’ll have to take care of her, it’s not going to get any better, and at some point I may have to put her in a facility if I can’t deal with it . . . . The type of dementia  -  putting a name on it  -  that doesn’t mean anything to me, if it can’t tell me at what point something’s going to happen.”

The specific kind of dementia that each caregiver in her support group is dealing with just doesn’t come up.  “That’s something technical, and we’re dealing with the reality,” she says.  “The technical or medical terms aren’t really important.”

 

Researchers believe there may be a genetic component to Alzheimer’s.  A specific gene has not been identified as the cause of Alzheimer’s, but one may have a higher risk of developing the disease if one has the apolipoprotein E (ApoE) gene  -  especially a variant called ApoE 4.  The genetic factor is usually associated with early-onset Alzheimer’s, according to Dr. Diana Kerwin, a specialist in dementia, cognitive impairment, and geriatrics at Northwestern Memorial Hospital, and part of the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern.  Only 5 percent of younger people with Alzheimer’s have the gene.  Among the largest group of Alzheimer’s patients  -  later-onset patients  -  25 to 30 percent carry the gene.  But there are also those who have the gene but never show signs of Alzheimer’s.

Donald’s mother and two uncles had Alzheimer’s back when people called it senility.  Julia fears for their children.  “I pray that they do not have the genes (for Alzheimer’s),” she says.

Peggy’s aunt also has dementia.  With dementia in her family, Peggy says she is not fearful about developing it one day herself.  “There’s always a possibility, but you never know,” she says.  “Sometimes it’s best not to be prematurely stressed about something if you don’t know what’s going to happen.”

She thinks about whether she would want to know if she had the Alzheimer’s gene.  “Do I reallywant to know, or don’t I want to know?” she asks of the odds she might have the gene.  Ultimately she would choose to find out, if others could learn from what she was going through or if it would allow her to take advantage of the limited available treatments for Alzheimer’s.

 

When you become a 24/7 caregiver for a dementia patient, life turns upside down.  People with dementia need increasing supervision for their own safety.  Peggy, for example, still allows her mother to make her own breakfast but never without supervision, in case she forgets to turn off the stove or something.  A person with dementia may forget to take medications or even eat, and becomes unable to make his or her own health care decisions.  As the dementia progresses, the caregiver takes over all the cooking, the finances, and medical decisions.

For Julia and many other caregivers she knows, getting out and doing things, as they are often advised to do, is easier said than done.  She is Donald’s only security.  The only time when they are apart is when she takes him to weekly group therapy sessions with other patients.  “If I’m gone and don’t come back, Donald panics,” she says.

Julia cannot plan a day because of Donald’s Alzheimer’s.  Not only does she need to plan it around him so she can be with him all the time, but when she plans things, something inevitably goes wrong.

For example, Julia rarely lets him pay bills by himself because he has trouble doing so now, but sometimes he does it when she’s not around.  One day recently, she received a letter from their health insurance provider saying they hadn’t received the payment for Donald’s health insurance.  Apparently, one of the times when he paid bills by himself, the insurance bill was lost or misplaced, or he failed to make the payment.  It took Julia all afternoon on the phone with the insurance company to resolve the problem.  “I can’t trust him to do these things anymore,” she says.

 

At that moment, as Julia is sitting in the living room talking about the insurance payment fiasco, Donald enters with his walker, on the way to the door of their 18^th-floor apartment unit.

“I’m going down to get the mail, dear,” Donald says.

“NO!” Julia says, jumping up and hurrying to intercept him.  “Uh-uh!  You are not getting the mail without me!”

“Why, dear?”

“Honey, no.  Please.”

“I don’t lose the mail, I’ve never lost the mail.  YOU’VE lost the mail!”

“Donald, please don’t get the mail without me.  Please, I beg you.  There’s nothing urgent in the mail.”

This regular conversation is an example of the constant supervision Donald needs.  Julia is willing to get the mail with him and give it to him after she’s looked at it, but doesn’t want him to get the mail or open it by himself because he sometimes puts it down in a pile of papers and forgets where he put it.  This could cause them to miss another bill payment.

“Look, I’ll go down and get the mail with you if you must have it now,” Julia says.

“It’s not that, honey,” Donald says.  “It’s that you keep trying to make me incompetent.  I’ve never lost the mail. I’ve never done anything bad with the mail.”

“I’m not worried about you losing the mail.”

“Then what are you worrying about?”

“I don’t want you to open it without me.  That’s all.”

“OK, I won’t  -  other than the stuff that’s addressed to me!”

“Donald, please . . . it was yesterday’s thing that was addressed to you that was the problem.”

“What was the problem, dear?”

“It was the insurance.”

“What was the problem?”

“You didn’t send the check in.”

“Yesterday?!”

Finally, Julia resolves the argument by going down to the lobby to get the mail herself, leaving Donald frustrated and fuming in the apartment.

 

Dementia changes the structures of families.  As those with dementia lose their independence, their children and spouses assume parental roles  -  which is hard for both patients and caregivers.

It is a daily power struggle for Donald and Julia.  For his part, Donald says he feels incompetent when Julia monitors him so much throughout the day.  “What would be wrong with me getting the mail (by myself)?” he says.  “I’ve done it for 60 years.”  He feels frustrated and confused by Julia’s unwillingness to let him do things that he has done for years with no problems.  “What makes her like this?  I don’t know.  But she’s getting more and more that way.”

After so many years of running his own company, Donald hates having Julia be the one in control in their relationship.  And she hates it too, for that matter.  “We were partners,” she says.  And intellectually we were quite equal.”  But now their relationship is more like that of a parent and child than of spouses.

Donald once was “a remarkable man,” in Julia’s words.  In his early 20s, he took over his family’s business  -  a chain of clothing stores that was founded by his father  -  and over the course of the next 40 years, expanded it throughout the Midwest and South.

“He was very charismatic and driven.  Goal-oriented.  He was consumed by the business,” Julia says.  “He was a perfectionist.”

But that’s gone.  Now, she says, “he’s not the same person at all.”  Lack of interest has replaced his motivation and meticulousness.

Despite the obvious challenges created by Donald’s memory loss, Donald himself says Alzheimer’s has not affected his life much.  He says he has always had a positive outlook on life, and focuses on positive things, such as his family and what he is still able to do, rather than his illness.  He has not made an effort to learn about Alzheimer’s because of both his focus on the present and the fact there is no cure.  “I just am not by nature a worrier,” he says.

But Julia says there are days when he knows something is different.  While he always did have a positive outlook, he was also a “great denier.”  His focus on the present is part of his denial that there’s anything wrong.

When asked what changes he has noticed in his ability to do things, Donald says he has not noticed much of a change.  For example, he can still read the same books he has always read.  He is currently rereading Boris Pasternak’s Dr. Zhivago, and says he rereads things because he enjoys them, not because he has trouble understanding new things he reads.

In fact, he probably has more trouble than he realizes.  He may enjoy rereading things and still be able to read Boris Pasternak, but Julia thinks he struggles with difficult material more than he admits.  His activity level in general has definitely changed because of his mental decline.  They once discussed current events every night and took courses together.  Now they talk about current events a little, but not as much as before.  The main thing Donald does at night is watch Law & Order and the news.

That, she says, is the hardest part  -  losing her best friend.

 

Peggy has also had trouble adjusting to her new role in her relationship with her mother, and the fact that her mother isn’t the same person anymore.  “That’s a really hard thing,” she says.  “I thought it would be hard, but I’m getting there.”

Though her mother’s personality is mostly the same, Peggy has to remind herself to talk to her not as adult to adult but at a child’s level.  She has not even told her mother that she has dementia because she doesn’t have the cognitive skills to understand.  “I figured, just let her be peaceful wherever she is now,” she says.  “Let her just stay in that zone and not upset her in any way.  I’ll take care of things.”

Families have to work on not being logical and rational with dementia sufferers because dementia sufferers can no longer think rationally.  Morhardt called the approach “therapeutic fibbing,” explaining, “You don’t have to tell them the truth about everything because they can’t possibly understand.”

At this point Peggy’s mother realizes there are some things she can’t do, but she blames them on old age.  She used to bake cakes as a hobby but realized she could no longer do so when her cakes started to fall in the middle.  She no longer drives, and willingly turned control of her finances over to her daughter.

 

Many factors affect how a patient and his or her family cope with the disease, Morhardt says.  It depends on an individual’s psychology, the strength of a family’s bond, the financial situation (caring for dementia patients can be expensive), and whether the patient or anyone else in the family has other health problems to deal with simultaneously.

Donald has a short temper when he doesn’t get what he wants, such as not being allowed to get the mail or read it by himself.  At times like these, Julia tries to keep calm and be patient with him.  “I try to remind myself that he can’t help it because he’s sick,” she says.  But she admits she gets frustrated and loses her temper when he stubbornly insists on doing something himself.  She remembers some advice that a relative who recently lost her husband to Alzheimer’s gave her.

“Don’t you ever lose your temper?” Julia asked the wife.

“Yeah, but keep in mind that they forget!  So don’t punish yourself.”

Peggy has been learning in group therapy ways to deal with the changes in her mother’s behavior.  Finding humor in things that happen is key, she says.  Another lesson is to remain patient and choose which battles are really worth fighting.  For example, some of their arguments are about money.  Peggy usually gives in during these arguments to keep the peace.

Denial makes it harder for both family members and patients.  It creates conflict, as with Donald and Julia.  Morhardt says it also complicates efforts to find a new way to live with dementia, because family members who are in denial might not get involved in creating a safer environment for the person as the dementia progresses.

It creates obstacles in treating the dementia symptoms.  Family members might think their loved one who is sleeping or watching TV all day is depressed or lazy, but in reality, the part of brain that allows him or her to plan the day is impaired.  Morhardt says these patients probably would benefit from having someone to help guide them through the day  -  creating structure, making sure they eat, and getting them to take their medications.

Morhardt described one family whose father’s dementia is dividing his family.  His wife wants him in a nursing home but their grown children think he can keep working.  The situation makes doctors’ and social workers’ jobs more challenging.  “Our job is to help them understand how he is performing on the (diagnostic) tests and how it’s different from how he performed in the past  -  without alienating either side,” Morhardt says.

Peggy’s cousins  -  the children of her aunt with dementia  -  are clearly in denial.  They live in Nashville, their mother lives in Chicago, and they try to deal with her illness long-distance because they don’t want to face the reality of their mother’s situation.  But Peggy has learned that there is no way to deal effectively with Alzheimer’s long-distance.  “You can call someone, but you don’t get the real scope of things just talking on the phone,” she says.  “You can ask if (an Alzheimer’s patient) has eaten, but you don’t know how long whatever they’ve eaten has been in the refrigerator.  My mother thinks if it’s in the refrigerator it can stay there indefinitely.”

Recently Peggy learned her aunt had lost 16 pounds in the last three months, leading her to think she was forgetting to eat.  Since then, she has been urging her cousins even more to come to Chicago and spend time around their mother to see for themselves what she is like.

 

It is hard to predict the course of Alzheimer’s in each person.  The decline may be very fast or prolonged over time.  But Peggy and Julia made a decision to not let themselves think about the “what if.”

Peggy has had acquaintances whose parents had Alzheimer’s.  Having watched from a distance what they went through, she knows basically what to expect as her mother’s dementia progresses but not how she will react when the time comes.  She knows she can’t change anything and, for now, takes things a day at a time.

At some point she will be unable to give her mother the kind of care she needs, and may have to put her in a nursing home.  “I know that may wear me down more than anything  -  the constant visits, making sure they’re treating her the way they should,” she says.  She has also heard that not all places take Alzheimer’s patients because they are unequipped to deal with them.

Peggy’s mother has faced life-threatening diseases before.  She had colon cancer and lung cancer within the last 10 years and went through surgery, chemo and radiation.  After all of that, Alzheimer’s is likely to be what defeats her.  Still, Peggy says, her mother is a fighter.

Julia worries about what the future holds for her husband as he worsens, but tries not to think about it  -  both because it is too painful and because she can’t do anything about it.

“It’s one of the subjects that comes up in the support group  -  what’ll I do if this happens or that happens,” she says.  But Alzheimer’s takes a different course with everyone.  “You just can’t plan.  You just have to do it.  You put one foot in front of the other and go from day to day.”

The day may come when she is unable to take care of Donald by herself.  But, she says, “I’m not going to put him in a nursing home.  No way.  I’ll take care of him at home, somehow.”