Excerpted from Nancy Wexler's book, Mama Can't Remember Anymore.
The United States is a remarkably mobile society, especially for the young. For many, career objectives have them packing-up and moving-out. Others want to escape the unfortunate circumstances of their childhoods.
For the upwardly mobile, "moving up" frequently means "moving away." Some people nest wherever they meet their mates. Some have a sense of wanderlust. Whatever the reason - business, pleasure, or necessity - adult children of aging parents often live far away from "home."
Take, for example, the case of Maria, a stressful situation which certainly isn't unique, and often doesn't end as pleasantly...
Maria If a concerned neighbor had not called her, Maria, a long-distance caregiver in Houston, would never have known about the condition of her mother, age 77. The neighbor revealed a terribly distressing picture of Mrs. Sandoval's life in California: a refrigerator full of spoiled food, stacks of paper covering the floor, filthy bathrooms, a broken stove, dust everywhere.
Maria was heart-broken, for she truly loved and respected her mother, who throughout childhood had always kept their home immaculately clean and orderly.
Feeling helpless, Maria confessed: "It's a terrible feeling to be working full-time, 1500 miles away. My job and family situation don't allow me any time to fly out to help my own mother!"
Fortunately, Maria called the National Association of Professional Geriatric Care Managers* and was referred to me. She flew to California and was present when I assessed her mother's condition.
With the information gathered from the assessment and a complete diagnostic work-up, I was able to create a care plan and quickly brought matters under control. Maria decided to place her mother in a fine board and care home, where she receives truly wonderful assistance. They talk daily on the phone. It's not as good as being there, but they are happy.
Younger people are not the only ones who have dancing feet. Older citizens also choose to relocate far from former hearth and homes.
Retirement may mean moving to a warmer climate and leaving the children, as well as the snow, far behind. The illness of a sibling or spouse may require relocation. As neighborhoods change, older residents may "flee" to safer, if less familiar, surroundings.
Of course, families may feel almost as close to each other as in years gone by. The teephone can keep loved-ones in continual contact, and the miracle of modern transportation means that even the most far-flung relative is usually only hours away.
Then there's the fun of sending and receiving mail. Maybe I'm old fashioned, but I think a good, long letter from someone I love is one of the great pleasures of life.
For those who no longer write letters by hand, we have fax machines and e-mail. Soon, there will be video phones, which may reveal more than you want to know! So today, out-of-sight need never be out-of-mind, or out-of-heart.
Families can get along swimmingly for years in this fashion. They often see each other ritualistically during celebrations and the major holidays in their cultures: Christmas/Passover/Ramadan/Asian New Year; births/weddings/funerals; 50th Anniversaries; and occasional summer vacations. This may be enough family contact, when times are good.
The rest of the years and decades, they keep in touch any way they can...until...up pops the devil, wearing the guise of a gerontological crisis: stroke, Alzheimer's, a broken hip, or significant psychiatric impairment.
When this comes about, the whole family is affected. Love may know no boundaries, but the ability to spend the time and effort it takes to really aid Mom or Dad sure does. Soon, the family may wind up in a frenzy of discord and guilt.
Sister Sue yells at Brother Bob: "You're the closest. You should be the one to go take care of Ma."
Brother Bob yells back: "I can't take the time off work and keep my job. You go and I'll pay half the airfare."
Sister Sue screams: "I just had a baby and she needs me. Use your vacation time."
Bob retorts, "No can do. I only have a week and I promised the kids I'd take them skiing."
And so it goes. Meanwhile, the old folks may be in desperate need of support.
Luckily for many families who are separated, there is a solution: the friendly, thoroughly capable professional geriatric care manager who lives and works in your community.
Even families who are not separated by distance can benefit, since it may be impossible finding enough time to truly care for one's elderly parents, considering the demands of job and family that modern life places on us all.
Not only do we understand what the elderly experience, we also have the time, ability and know-how to make sure they receive TLC...the TLC that their children really want to give them, if only they could. A sensitive geriatric care manager becomes, in a sense, a "surrogate child" for the needy patient.
When I receive a call from a client who needs help with an elderly loved one living in my service area, time is of the essence. Fortunately, I am almost always able to jump right into action...
First, within a day (and sometimes within hours), I personally visit, or send a trusted associate to visit the patient and make an assessment of the situation. After talking with neighbors, friends, doctors and clergy, in order to get a clear picture of what is going on, I report back to my client.
Assessments are the corner-stone of geriatric care management. This service can be vital, not only to the elderly person in need, but also for the family, which is also in crisis. Readily available on-the-scene professionals reduce intra-family tensions, healing painful breaches that otherwise might last a lifetime.
I know of one case where a dispute over the care of an elderly father became so embittered that the family was torn apart. When the father finally died, half the family didn't attend his funeral. Later, when one of the brothers died, the siblings only sent the briefest condolences to his wife. Such tragedies are all too common.
Second, I make sure the immediate crisis is stabilized.
For example, I was retained by Robert, a highly successful lawyer who lives in St. Louis. His 92-year-old father, Sam, a California resident, suffered a medical emergency. Robert was in the middle of an important trial and couldn't get away to be with him, although he dearly loved his dad. Sam's HMO hd been changed, and they were confused about the procedures and benefits of the new HMO.
As my client's advocate with the HMO, I was able to have Sam seen by the right doctor in a reasonable amount of time, so he didn't fall through the cracks. Accompanying Sam to the doctor, I suggested that if his depression didn't improve, he could consult a geriatric psychiatrist in the HMO, or see one privately.
With HMOs and some other managed health care plans, patients are usually not free to choose any doctor they want, so this approach isn't as easy as it once was.
Third, after a crisis is stabilized, I recommend options for the elderly family member's best long-term care. It may be to arrange for in-home care at the patient's residence. Or it may be to find an alternative living arrangement, such as a retirement hotel, small board and care home, or skilled nursing facility.
We also discuss many factors that must go into the family's decision-making process, such as cost, service, availability, and expectations for the patient's future prognosis.
In the example above, it was determined that the lawyer's father would do best living at home, with in-home custodial care, intermittent visits from a nurse and a physical therapist, and housekeeping services, So I arranged these things. As a result, my client did not have to drop his busy practice to fly to California.
Fourth, I continue to monitor the patient's progress, reporting back to my client on a regular basis. In essence, I'm an extra pair of eyes, ears, legs and hands, doing what the adult children would do themselves if they were available and had the expertise. They may ask to me to provide such services for years. Strong friendships often develop with both the patient and family.
A typical example of how useful and consequential long-distance care managing can be to families and patients, is the case of Otis...
Otis At the time of my involvement, Otis was in his mid-80's, living by himself in Los Angeles. He recently lost his wife, and the tragedy hit him hard. The family worried so much about his welfare, that they called me for a consultation.
The initial telephone call came from his daughter and only child, Joyce, a writer for a prominent national women's magazine. A few years prior to the death of Otis' wife, Joyce was also widowed. She had recently remarried and was happily beginning a new life when her father ran into trouble.
Even though Joyce lived in Georgia, 3000 miles from her father, she never failed to keep close tabs on him. She called Otis almost every day, and arranged for his neighbors to let her know if they ever felt that something was wrong. A cousin in the area promised to keep a sharp eye out for trouble.
One day, Joyce received a call from the cousin, who had been talking to the neighbors. Apparently, Otis had stopped socializing with them and rarely left his apartment. They reported that when they did see him, he looked terrible. When the cousin visited Otis, he could only agree. Joyce's father seemed to be sinking, and sinking fast.
This confirmed the fear that had been gnawing at Joyce for several months. Ever since her mother died, it seemed her father was slowly drifting away. Otis didn't sound sharp on the phone. He spoke about an imaginary friend in the mirror, who helped him brush his teeth. Clearly, something had to be done.
But what? Joyce was writing under a deadline. If she turned in her articles late, she'd violate her contract with the magazine... and it wasn't a if her father was dying. Otis was still living independently, and there were no special orders from his doctor.
Joyce decided to bring her father back East to live. His answer was simple and to the point: "Over my dead body!" No matter how hard she argued, Otis was adamant. He would not move. And Joyce couldn't force him, since her father wasn't sufficiently incompetent for her to legally seek conservatorship.
A retirement hotel was out, too, because Otis wouldn't leave his apartment. Considering her job and new husband, Joyce couldn't move to California. So, what to do? She asked her father's doctor, who referred Joyce to me.
The first thing I did was visit Otis. He was a feisty old fellow, determined to prove to me and his daughter that he was fine and could live alone. To prove this, Otis climbed on a rocking chair and changed a light bulb!
We got along fine, but he made it absolutely clear to me that my assistance was not needed. He also stated that any in-home help hired by his daughter would be immediately fired.
Talk about a dilemma...how to deal with an octogenarian, severely depressed because of his wife's death, who had mild hallucinations and needed in-home help, but wouldn't accept it. (In a free country a person has the right to be miserable and unstable, just as long as they don't endanger themselves or others.)
"Think, Nancy," I said to myself. "It's time to come up with a plan."
It was obvious, after talking with Joyce and others who knew him, that Otis liked women. He enjoyed looking at them, talking with them, flirting with them (and wasn't above making a little proposition to them from time-to-time). He was in desperate need of companionship, as well as someone to watch over him.
"Yes, " I decided, "the time is right. Time to call in my secret weapon...my one and only Martha."
Many private geriatric care managers have one or more persons on staff who are employed to assist patients with daily living needs. They provide transportation, shopping assistance, and other light services for the patient, as well as companionship.
Martha is a senior citizen herself, so she develops rapport easily with patients. Such closeness makes it easier to fulfill Martha's two most important functions: friend, and quiet observer for the care manager.
Martha could always be relied on when the chips were down. She was in her early 70's, going on 35. Bright and articulate, Martha was fearless. She was trained to watch for warning signs that an old person was headed for trouble. I knew that Otis would receive as much as he gave, if he tried to give her a hard time... But how to get Otis to accept Martha's friendship, when he had thrown out all his previous in-home helpers?
The answer came in a flash: corned beef. Otis loved corned beef sandwiches. So, I arranged a lunch for the three of us at a local deli. Martha and Otis hit it off like gangbusters! A true friendship was born.*
Initially, Martha took Otis out for lunch once a week. Soon, it was up to twice a week, with phone calls in-between. Martha managed to get Otis to go shopping, and made sure his refrigerator was filled with healthy food. Yet, their connection always centered around corned beef sandwiches at the deli.
Martha's task was far from easy. While acting nice to her, Otis had not changed his stripes to the rest of the world. He'd often create a scene at the deli or supermarket, arguing with anyone and everyone whom he imagined had gotten in his way.
However, Martha did make my job easier. As long as she was there, Otis seemed to enjoy my visits. Plus, she gave me weekly updates on his welfare.
Otis' doctor agreed to refer him to an excellent geriatric psychiatrist, whom I often worked with on such cases. We wanted to know if he was in an early stage of dementia, or whether his hallucinations were caused by loneliness and/or depression.
After a thorough evaluation, it was determined that the basis of Otis' distress was grief over the loss of his wife. His hallucination of a friend in the mirror was not harmful, because it proided him with comfort. The psychiatrist scheduled visits every two months to monitor Otis' emotional state.
For over a year, things worked out well for everyone: Otis was being seen by the physician to make sure he was doing well; he had a good friend in Martha; Joyce was able to live her life with the peace of mind that her father was being tended to by a "surrogate daughter" (me); and I had the satisfaction of a job well-done.
Then, matters took a turn for the worse. Otis' invisible friend started to become hostile. Rather than helping Otis with brushing his teeth, the "friend in the mirror" began to upset the old man quite a bit. He threw water at the mirror to make the friend go away. I feared the next step might be for Otis to throw a punch at the mirror and cut himself badly.
This new symptom was accompanied by a change in Otis' personality. He began to act more like a dementia patient, suffering short-term memory loss and some confusion. He wouldn't even let me in the house unless Martha was with me. Moreover, she reported that he wasn't as sharp as he had been. He was having trouble sleeping. Even his beloved corned beef sandwiches seemed to have lost their appeal.
I discussed the matter with Joyce and Otis' doctor, and we again decided it was time to call in the geriatric psychiatrist. This time, it was determined that the neurosis of the secret friend had grown into a full-blown psychosis, which had begun to get a real grip on the old man.
The psychiatrist decided to "bring him in" for a 72-hour hold, which was extended to a 14-day hold.*
While Otis was in the hospital, the psychiatrist tried to stabilize him by prescribing anti-psychotic medication. Other doctors evaluated him, to rule-out a tumor or any other organic causes.
I visited Otis regularly to follow his progress, and to make sure the hospital staff treated him well. Martha usually came with me, since I knew that he felt deeply lonely without her.
Happily, with a little fine-tuning of treatment here and medications there, Otis became stabilized, his hallucinations were gone, and he began interacting with people again.However, because he was functioning on a lower level than before hospitalization, I strongly recommended to Joyce that the time had definitely come for Otis to move near her. So I referred Joyce to Suzanne, a colleague who works in Atlanta. Such a referral, to a professional geriatric care manager in the family's community, is one of the essential elements that guarantees continuity of care.
Joyce, Suzanne, and I discussed the case in a conference call. We all agreed that the best thing for Otis would be to move to a small board and care home close to Joyce.
Joyce still had to talk Otis into flying home, or face the prospect of filing for conservatorship and forcing him. We were finally able to convince Otis to move by agreeing that it would only be a trial visit, and he could come back to California if things didn't work out.
When Otis moved back South to be near his daughter, I knew in all likelihood I'd never see him again. There was sadness in parting, but it was satisfying, because I was able to make a difficult time in his life more bearable.
Postscript: When I last heard from Joyce, Otis was contentedly living in the board and care home. He was doing as well as could be expected, considering his age and precarious health. Otis was enjoying his daughter's proximity, and he established a new friendship with his granddaughter. Interestingly, Joyce maintained a friendship with Martha through the years, providing intangible benefits to them both.
Not all long-distance cases involve a child in another locale and a parent who lives in my service area. Sometimes, it's the reverse, as in the case with Frances...
Frances 74-year-old Frances lived in Phoenix, Arizona. Her daughter and son-in-law, Marge and Gary, live in Ventura County, about 60 miles north of downtown Los Angeles. Their young family keeps them extraordinarily busy.
Frances and Marge have had a notably poor relationship over the years and, while there was still love between them, no attempt had been made to work out a close living arrangement.
The only medical contact Frances had in California was with an internist, who treated her for a minor ailment during one of her occasional visits. Marge knew none of Frances' doctors in Phoenix.
As is often the case, word that trouble was brewing came from Frances' neighbors. They called Marge to report that a personality change was occurring: Frances was becoming the neighborhood recluse. She rarely appeared outdoors, and when she did, seemed to go out of her way to alienate one and all.
To make matters worse, Frances was seen wandering aimlessly around the neighborhood from time-to-time. This was quite upsetting to Marge, since her mother had no prior history of psychological disturbances.
Marge had no idea what to do. It was impossible for her to take an extended-leave from her family and job in order to take care of her mother in Phoenix.
Since Marge didn't know anyone in the Phoenix medical community, she didn't feel secure trusting her mother to strangers, even if they were professionals. So she called the California internist who treated Frances, and he referred Marge to me.
The first thing I did was to call Paula, a professional geriatric care manager in Phoenix, and asked her to do an assessment of Frances' situation and state of mind.
This wasn't going to be easy. Frances had decided there was nothing wrong with her, and made it quite clear that she would not cooperate with any of Marge's ideas about seeking medical assistance.
My colleague had to tell a little white lie in order to see her patient...* Paula learned that Frances had become obsessed with the fantasy of selling her house for an exorbitant price, and would constantly call real estate agents to come to her home. They were her only social contact. Creatively using this information, Paula identified herself as an real estate agent, to see if the elderly lady would let her in.
Frances opened the door immediately, without even asking for identification... This set off Paula's professional alarm bells. Remember, the point of the assessment had to do with whether Frances was truly able to care for and protect herself. Despite her paranoia, the defenseless old lady let in a total stranger with no questions asked. This significant clue to Frances' mental state became a crucial part of the evaluation.
After spending about an hour with Frances, Paula came to some unfortunate initial conclusions:
"It is too easy for anyone to gain access to Frances' home, despite her paranoia. She is not only paranoid, but appears to have some senile dementia or Alzheimer's-related condition. Her logical thought processes are pretty much gone, as are judgment and critical cognition.
"Frances recently visited her unmarried adult son in Boston, but said the only reason she wanted to go was so she could 'be his baby-sitter.' The son's home was immaculate, yet Frances admitted she still cleaned it obsessively.
"Frances' only activity seems to be a weekly walk to the grocery tore, although there is little edible food evident in her refrigerator. She isn't eating well and is obviously deteriorating mentally. There is a paranoid twist to everything she says. My impression is that Frances lives an almost totally isolated existence.
"While matters have not reached a crisis point yet, they may, unless intervention occurs within a relatively short time."
It is at this point when our roles as geriatric care managers typically begin with most families. It is a little late, but better late than never.
Clearly, something had to be done immediately. Frances had no family in Phoenix. Marge decided that since Frances trusted my ability and my contacts, she would bring her mother to Los Angeles.
Marge also preferred to work personally with a local care manager, rather than by phone or mail with one in Phoenix. The real question became, "How do we get her here?"
Interestingly, Marge's husband Gary rode to the rescue. A compassionate, successful attorney, Gary had no objections to spending whatever it would take to make his mother-in-law's life better. More significantly, he and Frances got along remarkably well, which was the opposite of Frances' and Marge's relationship.
Gary flew to Phoenix to pick up Frances. A mild subterfuge was used, only as a last resort. (Subterfuge is only used in times of crisis.) Frances wasn't told that she was going to a hospital for evaluation. She thought she was coming to visit her family (a half-truth).
Upon arriving back in Los Angeles with Frances, Gary drove directly to a hospital which has an excellent gero-psychiatric unit.*
One major advantage of utilizing the services of a private geriatric care manager is that we are often able to get an extra measure of service from the professionals treating our clients and patients.
Although it was Sunday, his day off, the geriatric psychiatrist I referred Marge to, met them at the hospital and admitted Frances. (He swore never to work on his "rest day," but that's what he always says!) This was of great value to Frances, since Sunday was the only day the family could be there with her, easing her adjustment to the psychiatric unit.
During the next 2-1/2 weeks, Frances had a complete diagnostic work-up, and was carefully assessed as to what medications, if any, were needed.
The consensus of the medical and mental health professionals was that she could no longer safely live independently. I agreed. Frances would do best at a board and care home in the Los Angeles area.
Before making the placement, I arranged a lunch for Frances, her family, and the owner of the board and care home. All seemed to go well, and Frances moved in.
All's well that ends well, right? Well, not quite yet. Frances lasted exactly one hour at the first home she was placed in. It came as quite a surprise to the family, because they had carefully selected this particular home after evaluating several others.
But Frances immediately decided that she didn't like the way things were run, and she wasn't about to keep quiet about it... Oh well, back to the drawing board. This isn't so unusual. After all, we're not dealing with machines, but people. It sometimes takes a little while to find the "square hole" into which the "square peg" fits smoothly.
So, the family decided to have Frances live at home with them. Wrong move. Frances and Marge still didn't get along. Soon, the entire family was in the middle of a crisis.
One more try at a board and care home also proved a failure, when Frances got upset one evening and decided to leave.
By this time, many families would have given-up and gone the nursing home route, even if it meant putting their loved-one into a locked facility. But not Marge and Gary. No quitters, they.
First, Gary filed a request, granted by the court, to become the conservator of both Frances and her estate. In other words, he had the legal right to make decisions about her life, under court supervision.
They tried keeping Frances in their home again, this time with a live-in helper. The situaion worked...barely. Everyone's sanity seemed held together by spit and bubble gum.
The stress became so great that two of their children began acting out in school and needed the assistance of a child psychiatrist. Such ripple effects are not uncommon.
Finally, there was an opening at a unique, larger board and care home, the size of a small retirement hotel. This wonderful facility specializes in demented and psychologically disturbed older people. It seemed perfect for Frances, who was suffering symptoms of early Alzheimer's, so she moved in. Lo and behold - it worked!
Frances loves the place and they love her. The home is close to Marge's, so the family visits Frances often. An ideal solution to her ordeal has been found at last. Correct placement is not an easy process.
Not every case of long-term caregiving is so complex. As in the case of Emil, sometimes less is more...
Emil Emil's beloved wife, Goldie, died a year ago, after 52 years of marriage. Emil was staggered by her death. Always a passive fellow who prided himself on fulfilling his traditional roles of husband, bread-winner, and father, he had been content having Goldie run the household and the family's social calendar.
But now she was gone, leaving 86-year-old Emil bereft and bereaved. Overnight, his home became just a house, and it felt empty.
So Michael, who lived in California, flew to visit his Dad in Florida and gave him a beautiful long-haired Angora cat for company. Emil and the cat, now named "Mimi" for unknown reasons, eyed each other warily...just whose home was it?
Even though he always had a good-natured joke when he exchanged pleasantries, and everyone who met him seemed to like him, Emil was a shy introvert at heart. He lacked self-confidence socially and had almost no social contacts, since they all had been initiated by his wife. So he stayed at home with Mimi Cat.
A major added burden was all the household responsibilities, which now fell completely into Emil's lap... How to do laundry? What to buy at the supermarket? How to cook for himself? What to eat? When to change clothes? What outfit to wear? How to clean the house??? Goldie had collaborated on, or made decisions about all these "housewifely" responsibilities.
To top off the year of terrible troubles, when his whole world of half-a-century suddenly collapsed around him, Emil was experiencing severe short-term memory loss. Perhaps worst of all, he was fully aware of his mental deterioration. Profoundly lonely and depressed, he panicked under the emotional stress.
Always trying to do the "right thing," Emil voluntarily gave up his driving license and car, despite never having an accident in over 65 years of driving. He had an older sister 30 miles away, but when you could no longer drive or take a bus alone, 30 miles was the same as 3000 miles.
Michael was a busy independent filmmaker who sometimes had to work seven days-a-week. He didn't have the financial resources or free time to spend long "vacations" in Florida, calming and caring for his father.
Yet Michael was devoted to the old man and wanted to move him to California. Recently, he heard from Emil's friendly neighbor that his father was sinking. Concerned about the rapid decline, Michael came to my office for a consultation. He didn't know what to do.
But I did... I immediately called Miriam, another professional geriatric care manager who fortunately lived in Emil's community. (I trust Miriam so much, that ten years ago my husband and I retained her to manage thecare of my mother-in-law.) Michael described the situation to her on the phone. Miriam promised to visit his father the next day, to conduct an initial assessment.
True to her word, Miriam did just that. The situation was not as bad as was feared. Emil needed assistance, but thank goodness, it was not an emergency case. Miriam arranged for some in-home help, took him to the doctor for a check-up, and visited Emil once a week to make sure that he was okay, always remembering to bring Mimi Cat a little snack.
That gave Michael a sense of security. It wasn't necessary for him to drop everything and immediately fly to Florida. He could go about his business without guilt or the fear that he was not taking care of his father properly.
This also gave me the luxury of time to search for the right placement option. As these words are written, Michael and I are working closely to find Emil's future home, a placement that will maximize his quality of life and allow him to live close to his son.
By the way, Emil now insists on bringing Mimi. I'm sure we'll find an excellent small board and care home that would love to accept a nice man and another cat in residence.
Having a network of colleagues throughout the United States who can be contacted, allows a member of the National Association of Professional Geriatric Care Managers to quickly respond or intervene, averting many a geriatric crisis. And it can all be started with a phone call, as in Emil's case, from one coast to the other.
Home Main Book Page Copyright Nancy Wexler 1996, 1998, 2000.