Remarks of Barbara K Kincaid
Alzheimer’s Family Caregiver
Genesis Rehab Services, Inc.
Building Bridges for Quality Dementia Care
Williamsburg, VA
November 4, 2011

Joys of Alzheimer's Caregiving

Good Morning. Thank you to Miranda (Burbank) for her introduction.

As an Alzheimer’s family caregiver for 10 years, I have been invited to share some of my experience. I was delighted to be presented with this opportunity and to be introduced to a wonderful book, Don’t Eat the Elephants .

Delle Crowe discovered this book and it is being made available to each of your facilities as a part of the summit. This morning it is my privilege to use material from this book and from my own experience as a part of my presentation.

Elephants was written by Patricia H. Miller. It’s a love story, a how-to-provide care, and a work-the-system book. Pat’s husband, Don, was diagnosed with early onset Alzheimer’s at age 59. In contrast, my mother’s diagnosis came at age 83.

Alzheimer’s was unexpected in Don’s case. In my mother’s case, it was not. My grandmother had it, her older sister had it, and later a younger brother had it. Nonetheless, I always hoped my mother would slide past it. I remember listening to an interview on NPR and saying to myself…well, Mother isn’t THAT bad.

But, of course, she came to be.

Oddly, the only Alzheimer’s with a widely accepted genetic link is early onset Alzheimer’s, not late onset.

Don was occasionally sad and weepy. My mother, though a weeper before Alzheimer’s, never cried later. Most of the time she was happy living in her own little world. Indeed, as an Alzheimer’s patient, she became someone who was easier to be around than she was before. Several years ago a friend sent me an article from Newsweek about an Alzheimer’s subset—the happy patient. That was Mother, especially in the early stages.

By the way, another reason I’m pleased to be here today was the quality of our physical and occupational therapists. They listened and responded to what they heard. Our therapists were the jewels in our caregiving lineup along with remarkable teams from the Alzheimer’s Family Day Center in Fairfax, VA, and an Arlington County Day Care program for early stage dementia. The Arlington program is where Mother became Miss Dixie.

Here are some of the things I’m going to talk about today:

Finding the person who is
Boundaries for trial and error
Avoiding triggers
Coping tactics
And, finally Observations, failures, and lessons

Miss Dixie was formally diagnosed with probable Alzheimer’s in 2000. At first, I was a long-distance caregiver serving as backup to my father. My parents lived in Central Michigan and I lived in Northern Virginia. A long haul any way you cut it…

In 2004, I completed an addition to my house so that I could care for my parents in a home where we would live like John Boy and the rest of the Walton tribe in that 1970s television show. Only difference was … it was just me. No other members of the tribe.

Four months after Mother and Dad arrived in Virginia, my father died and my best friend in this project was gone.

In those early days, I made a big deal out of the “probable” part of Alzheimer’s. I think now it was my version of denial. Alzheimer’s ran in the family. In a couple of them, it tracked with diabetes, but Miss Dixie didn’t have diabetes. In the early years, she was overweight, but not diabetic. She was remarkable, mainly for her good general health. Her medications were pretty much those associated with Alzheimer’s. Ironically, her general health was precarious as a younger adult. Headaches, possibly migraines, back pain from an inherited disc condition, muscular aches and pains.

As Alzheimer’s took hold, she began to lose weight, but in her case it was a good thing. She became healthier and hardier and her good appetite helped sustain her. More charming and funny than she was before Alzheimer’s, she had men tripping over their feet to help her. It was quite entertaining.

She lived at home with me, but there were days when I wanted to kill her. She could be mean … hitting, kicking, and biting. Shockingly mean! Then sweet and vulnerable… In the early days, she would thank me for helping her as I put her in bed and said goodnight. I needed to remember that as her disease progressed.

From mid-stage dementia on, Miss Dixie was not my mother. Still she had a strong sense of herself, a charm and a presence. Most of the time – I liked her.
 


The Person Who Is
For years now I have listened to people in my support group try to put words to the feeling and strongly held beliefs that some part of that person before Alzheimer’s Disease is still there. So far, I have not found words that adequately describe the connection that seems to remain.

For me, it was the light in Miss Dixie’s eyes. For Pat, Don would speak a few words that not only made sense, but also characterized the bond between them. For example, he’d say: “I’d wait anywhere for you,” with emotion and passion. Then, the moment was gone.

The most important lesson I learned from my support group was: If you’ve seen one case of Alzheimer’s, you’ve seen one case.

For family caregivers, the sense of losing the person we knew and guilt are overwhelming. Guilt? Both Pat and I felt great anxiety over discussions of “placement.” The message I believed and felt from early childhood on was that family meant you took care of your own. And, in my family of origin, that meant home care, not institutional care. It was totally and completely irrational, not based on any understanding of the challenges to be faced. But, you did it…I would have to do it. The end.

Professional caregivers, especially Emergency Room nurses, were a great help. The successful communicators emphasized the difference in each circumstance and with each Alzheimer’s patient. Generally, my mother was not overwrought and agitated. She went to bed very early, which meant I had more freedom than families who had an agitated non-sleeper.

Some folks, often marketing people in assisted living facilities I should add, would claim, “Home care can’t be done.” Certainly, I knew people in my own family and friends who had cared for a loved one at home up until the end, so I knew it could be done. For Mother and me, day care five days a week was packaged with home care. Other friends in my support group went with 24-hour, live-in care, small-residential homes, and larger residential homes. In Miss Dixie’s package, we had need for home services from occupational therapists, physical therapists, and occasionally nurses to help with wound care.

Getting back to the person who is… It is an enormous challenge to find joy in the presence of the person who is, without agonizing over the loss of the person who was. I personally feel it is more challenging for caregivers who are spouses. There are so many hopes and dreams wrapped up in spousal relationships. One friend in my support group has taken to thinking of her Alzheimer’s patient as her third husband. He is a different person from the second husband with whom she fell in love, though there are some reminders of the life they shared. Her description seems useful. Just pick the number.

For my mother, it was a little different. I had lived a very separate life—hundreds of miles away from her. I had done a lot of Eastern meditation work, so I had some practice dropping the ego and dealing with “The Now.” I could gratefully tune in to her playfulness, a welcome relief from the sorrow and pain she often reflected before Alzheimer’s.

Out of the blue, my little white-haired friend would ask. “Where’s my horse?”

“Well, where did you leave him?” I would respond.

“Well, I don’t know,” she would say. And, off we went tripping down that magical road looking for whatever joy we could find.

Pat and Don shared moments that brought both of them joy from the relationship that had been. Yet, there were also times when … “Don’s frustration, sadness, and depression threatened to engulf me,”
Pat wrote. I was spared that.

Are there pieces of the patient’s past that may still be with the person who is? At Pat’s fictitious Wentworth and during an otherwise unpleasant meeting, an occupational therapist opened an important line of questioning: “Was Don used to working at a desk? Did he have one at home? ” Unfortunately, the questions were asked as Wentworth was preparing to give Don the boot. Nonetheless, it provided Don with some level of comfort and familiarity for a brief period of time.

For my mother, color was something that continued to define the person who is as a source of pleasure. She became a painter in her 60s and had always had a visual memory and communication base. Once she insisted that I photograph her supper plate because she liked the color of the broccoli and carrots. Being a good daughter and a fool -- I did it, of course.

Many of you are probably far more familiar with interpreting behavioral cues than I am. Years ago I took a wonderful short course aimed at teaching me/us how to interpret communication styles – auditory, kinetic, and visual – and then frame messages to that communication style. Powerful stuff. It was so powerful that it actually scared me. A little too close to manipulation for my comfort zone… But, knowing that my mother was a visual communicator helped me tremendously. It could be a quick diversion: Oh, isn’t this pretty. Or, an opportunity for more profound communication…

Before I went in the hospital for hip replacement surgery, I showed Miss Dixie a picture of what would occur.

“That’s gonna hurt,” she said quickly. I was amazed. Then, she was off in her little world again. But she got it and Don got it, too.

Trial and Error Boundaries
As the patient changes, what works also changes. I’m sure that adds to the stress of caregiving. The trial and error blips that are hardest to take are those that are entirely unanticipated and perpetrated by the so-called experts. Every day is a crap shoot, 24/7, for family caregivers.

For example, we had a wild experience with Aricept. (By the way, I can pronounce the brand name. That’s why I use it. ) On a couple of occasions I found Mother lying in the closet on the floor. She had gotten up out of bed, decided to play in her closet, and I found her lying on the floor sleeping or so I thought. I started to identify this stuff as a fainting thing after our customary visit to the ER to check for broken bones.

Our neurologist at the time -- who I later fired -- also saw a blip on a heart test that caused him to immediately pull Aricept from her drug regime. She was also taking Namenda. There wasn’t even a conversation with me about it. No weighing, or considering what might happen. No discussion of how this might impact HER or me as a caregiver. I was there in the room, but I was a nonentity.

Almost immediately, she began to decline. I noticed it; so did the nurse at day care.

A couple of months later a similar, though more serious, fainting spell occurred. This one warranted hospitalization. No Aricept, but still fainting. After a week in the hospital, she forgot how to walk. So, she headed to skilled nursing for rehab. During the intake interview, I went over the reasons for no Aricept at great length. A long, detailed conversation…

Thirty days later as she was released to come home, I discovered that Aricept had been added to her drug regime. When, I don’t know. I was never TOLD. Never consulted. I was angry. But wait a minute! She seemed better than she was before she went into the hospital. Maybe it was the Aricept?

Since Miss Dixie was still struggling with her walking, we had occupational and physical therapists come to the house. What a great experience! Not only was the patient helped, but my daytime caregiver and I also learned. Suddenly it seemed that Mother was doing very well with her walker. Both the caregiver and I noticed it. Could it be that she could return to her old day care program, which would accommodate only early stage Alzheimer’s? I called the nurse for a formal assessment. None of us expected it, but it happened. Miss Dixie was the anomaly – the person with a progressively debilitating disease who was able to return to her previous status. An amazing gift for five months…

As I reported this episode to my caregiving support group, I continued to be confounded and annoyed about the indifference the neurologist displayed as he pulled Miss Dixie off Aricept. It seemed to me that a more responsible position would have considered the additional burden to the caregiver, which was considerable, when Aricept was eliminated. Everything about her care was harder.

So, I fired the neurologist with more glee than I should have felt appropriately. In the business of Alzheimer’s care -- sometimes marginally competent, insensitive, or just plain stupid care comes with advanced degrees. That is not only my experience, but also Pat’s and members of my Arlington support group. Common sense is an important boundary for trial and error.

Caregivers, both family and professional, need to learn to trust your intuitive judgment. And try not to get fired … if you know what I mean…

For example, Pat, her daughters, and key members of her support team did a thorough review of Wentworth, an assisted living facility with a nursing home wing. Though the facility did not specialize in Alzheimer’s, the administrator indicated the staff was trained to handle patients with the disease. Furthermore, as Don’s disease progressed, he would have priority placement in Wentworth’s nursing home as a part of its continuum of care. That’s what Pat was told.

But, Wentworth failed. In a scary series of non-communications and mis-communications, Pat and Don were on the verge of being pushed to the street. Administrators had misrepresented the skill sets and capacity of the staff to handle Alzheimer’s patients. Don was even put in four-point restraints and shipped off to a psych ward with after-the-fact communication to Pat. Outrageous! Simply outrageous.

Now having said that, I need to confess some of my own tactics. Medical procedures were challenging. Very honestly, there were occasions in which I simply had to restrain Miss Dixie. She had terrible feet. Hammer toes and nasty toenails. As her dementia advanced, the trip to the podiatrist became an ordeal. I held her hands and her legs down as she screamed bloody murder. The podiatrist and I pretended not to hear it. We hoped that the noise of his machinery might cover her screaming so the patients in his waiting room would not be frightened off. The minute it was over…life was pleasant once again.

She also hated having her blood pressure taken. In the ER and hospital settings, Miss Dixie could be quite aggressive. Had she been a boxer, her right hook would have been impressive. I was fascinated by this next experience and so was her primary care doctor.

The doctor started to tighten the blood pressure cuff and ordinarily Miss Dixie would complain loudly, jerk around, and start to hit. I didn’t happen to be in the room when this particular measurement was going on. Somehow recognizing that this was a person you did not hit, Miss Dixie announced very politely and firmly: “I want you to leave.” Her doctor was fascinated by the judgment this incident displayed and so was I.

I came to view this as further confirmation the person who used to be is still in there somewhere on some occasions.

The incredible thing about trial and error with an Alzheimer’s patient is you just never know what’s going to work. From our intake interview, day care was a gift from the heavens. Mother went to “school.” Don went to “work.” I was fortunate enough to live in a community with significant day care resources:

-The first was a county-run adult day care program for which the fees were based on my mother’s meager income. Alzheimer’s patients could attend in the early stage ONLY, before incontinence and difficult behavior set in.

-A second program, referred to as graduate school in the local Alzheimer’s community, was an extraordinary private pay program for individuals who had advanced Alzheimer’s, even including hospice care if necessary.

There were several really amazing things about the second program. First, it was not unusual to have volunteer musicians and singers morning and afternoon on any given day. Second, there was an energy and joy that was palpable. I literally felt joy when I walked in that main day care room in the morning. Unrestrained joy and happiness… It came from a staff that the executive director, a social worker by training, recruited more for their attitude than skill sets. “We can teach skills,” she told me once. Marvelously consistent care with low staff turnover despite low, nonprofit wages… So, it can be done.

Mother was interested in going to school up until the last 4 or 5 months of her life. But, day care itself is another one of those big trial and error situations. It works well for some, but not others. In the early years, Don sometimes expressed anger about going to “that place ” before he went to Wentworth.

In Michigan, I had approached the subject of day care and failed to effectively make the case for her to go. No, she wasn’t going. My dad needed a weekly break, but her resistance was solid.

I’m not certain how my approach changed with the Arlington program, but as I explained it on the way to our intake interview, she said, “School” and I thought bingo! Perhaps, I was just learning how to shape the message. By the way, the social worker that interviewed us was the one who coined “Miss Dixie” and it stuck.

Other medications became challenges. Our first day care program emphasized adding a medication more frequently than I was really comfortable with. There was a medication recommended for urinary incontinence… completely useless as far as I could see. I was pushed toward anti-psychotics at one point. Miss Dixie took Risperdal briefly as I was trying everything to keep her in that day care program because of its low fees. I went along with the urging toward medications so that Miss Dixie would not be deemed a non-compliant patient.

Always when I asked for prescriptions, I prefaced it by saying her day care was urging it. The black box warnings on the anti-psychotics were a cause for concern. The language of the warnings was scary, but the actual numbers associated with the research seemed at odds with the language for a non-scientist like me. So after consulting my best friend from high school, who was a neurologist practicing in North Carolina, I went along with Risperdol.

Nonetheless, my comfort level improved significantly when we used Depacote and Valporic Acid off label as aides for behavior. By this time we were wired into a university-based neurology program. Here, it was suggested that I try various sequencing on my own to see what worked best for Mother. Alas, I was considered part of the team and the one who knew the patient best! How refreshing.

Avoiding triggers
Less information worked best. My dad would start off telling Mother she had to get up because she had a doctor’s appointment. Well, she didn’t want to go to the doctor so the war of wills was under way. My dad was a great guy, but in his frustration he had a kind of Marine Corps/Parris Island approach to her behavior. He tried to order her to go to the doctor, to take a shower. Ordering and arguing with an Alzheimer’s patient never works. Eventually we got a health aide from the county office on aging to come in to do the shower. Worked beautifully. No problem.

However, when I tried a similar service in Arlington – it flat out didn’t work. The worker that we were assigned tended to yell into the phone to her children rather than attend to my mother. There was a cultural issue here, but nonetheless her loud talking frightened Mother.

With Don… “Quick movements and loud demanding voices could surprise or frighten him, and cause an abrupt reaction. Soft tones and slow and careful movements, could work wonders.” Talking about him, around him as though he wasn’t there bothered Don, too, Pat wrote.

Don responded positively to compassion … patience, understanding, and respect. It could penetrate the “wall of Alzheimer’s,” just as it often works for the rest of us.

Pat didn’t say this, but I will. Patience and understanding are not billable. One area where family caregivers, professional caregivers, and administrators may be able to work together is building awareness among regulation writers about the time required to deal appropriately with Alzheimer’s patients. The extended visit on the Medicare form for doctor’s office visits sets a useful precedent, it seems to me. But there is a lot of work to do building awareness.

Back to Don… Pat taped one meeting at Wentworth. Some were articulating fear for the safety of staff and residents. Wentworth’s definition of “crisis” tended toward overreaction and panic much of the time . At one point, the social worker noted that Wentworth was so unprepared at handling severe behavior that they brought in a consultant, who confirmed that staff training in the nursing home was inadequate for aggressive patients.

A padded room was mentioned as though it was a desirable option. And, Pat thought about how well consistent acts of kindness, patience, and compassion could work, instead. Entering the patient’s world as quickly as possible was something I always tried to do, too. My mother could smell fear and she would quickly move to take the upper hand.

Coping Tactics
Toward the end when Miss Dixie resisted getting out of bed, for example. I found that if I left the room for 5 minutes, got MY FRUSTRATION AND ANGER under control so the energy in the room would change—often I could start over and the reason for the outburst would be forgotten. I understand that is much harder to do when you are dealing with many patients, but it also might be easier than you think.

Let’s recap a little here:

The coping paradigm that Pat taught herself was:
• Stop
• Divert
• Pause and try again

That was the paradigm that I used at home with Miss Dixie. I left the room so that the energy could change, came back with a smile, and tried again. Most of the time, it worked.

Use compassion, patience, understanding, and respect.

Use soft voices, slow, non-threatening movements.

Try soft touches as a calming tactic.

Energy and joy are free.

Observations, failures, and lessons
In my own arrogance, I was sure that because I was of a different generation, unlike caregivers of spouses, I would be spared the devastating outcomes noted in the landmark study published in 1999. The JAMA article was titled: “Caregiving as a Risk Factor in Mortality…” The window of concern for spouses is apparently four years . At one year, I’m still alive. But I have had cancer, hip replacement surgery, and my back is a mess. Let’s just say that my own health got my attention, and I confess that I was stunned that Ms. Healthy-as-a-Horse here could falter. As a spouse, health issues also confronted Pat. Family caregiving can be life-shortening work.

However, a new twist to this widely held conclusion regarding the burden of caregiving was reported by Paula Span recently in the New York Times. Epidemiologist Lisa Fredman of Boston University reported that the physical and mental activities required by caregiving were beneficial to family caregivers. Dr. Fredman acknowledged that the results were skewed somewhat by the fact that caregivers self select. If you’re not healthy in the first place, you are unlikely to assume caregiving responsibilities. In addition, her definition of caregiving was extremely broad, including bill paying help on an equal footing with daily bathing and toileting, etc .

So the more up-to-date caregiving conclusion appears to be: There may be benefits and burdens. The complexity and diversity of caregiving tasks make it hard to quantity in a research setting.

In her last months, getting Ms. Dixie in and out of the car became a nightmare. It could take 20 minutes for her to decide to cooperate. All I had learned still didn’t work on any reasonable timetable.

She fell getting out of the cab in October of 2010 and this time there was a significant femur fracture. This was the beginning of the end.

However, my biggest failure was Mother’s dental care. It might have been the cause of the infection that ultimately killed her. My mother’s teeth were better than mine. I got my dad’s miserable teeth. She was proud of her teeth before Alzheimer’s and took good care of them. I was even able to teach her to use an electric toothbrush in the early stages of Alzheimer’s. However, as Alzheimer’s advanced, I was unsuccessful in continuing her dental care. I went through a series of dentists and chose one recommended by the Alzheimer’s Association, but even that didn’t work.

The first dentist I took Mother to had the personality and charm of a wet fish. Since he was also my dentist, I took Mother with me to my appointment in the early stages. While I was in the chair, Mother didn’t like the energy in the office. She was right about that. So, Miss Dixie gets up, puts her hat and coat on, and leaves. Yes, the office staff knew she had Alzheimer’s, but we’re not talking about the brightest bulbs here.

So, I returned to the waiting room to find her gone. Fortunately, she had not gone far. She was walking around the parking lot looking at the trees. Once I got over the terror of her being missing, I had to laugh. She was absolutely right. The energy in that place said: get out of here fast. Another example to learn from: Don’t discount what an Alzheimer’s patient understands.

I thought I was taking care of Mother’s teeth as best I could. Brushing twice a day. Dental visits three times a year. But, I failed. I thought I had made it clear that I wanted cavities taken care of, but no, I was not going for crowns, etc. Our new dentist seemed to think I was content to let her teeth fall out. That was not my intention. In the months before Mother’s death I was pursuing a new dental strategy. I had asked a friend, who had been a caregiver and who knew far more than I did about dental issues, to help me think through what needed to be done. I was looking at hospitalizing her and putting her under an anesthetic for dental work.

I was sure there was the possibility of infection. As it turned out, her demise was aided by an opportunistic infection. She had just had surgery to repair the broken femur and appeared to be recovering from the surgery. Then, suddenly she stopped swallowing. She had come home, was under hospice care, and was being treated with an antibiotic for a urinary tract infection. So, which infection got her? I’ll never know. Even her primary care physician was surprised when I reported her death.

Now here comes my soapbox… Until there is a cure for Alzheimer’s, costs will continue to escalate. It will impact Medicare and Medicaid, long-term care insurance, and families who are channeling all their resources to Alzheimer’s care. It will impact multiple generations. For the first five years, I worked. As my health failed, I stopped working – retiring long before I intended. So there are enormous public and private costs to Alzheimer’s already. I believe it is absolutely essential to invest in research aimed at finding a cure for Alzheimer’s. It must happen. End of soapbox…

Miss Dixie left us on October 28, 2010. I was seated at my computer working on the slide show for her funeral service. The hospice nurse called me. I raced to her bedside as she took her final breath. She was beautiful. The skin of a 19-year old, not a woman who was nearly 94…

For months, we had both known the end was coming. When I took her to day care, I would reach over and hold her hand. It seemed to me that we both knew it wouldn’t be much longer. There was a peace and a comfort holding hands.

There is no winning with a terminal disease. Sometimes all you can do is “show up.” “Bear witness” as the grief counselors put it…

So, thank you for giving me this opportunity to share my experience. I hope to build awareness about the caregiving experience as the next chapter in my life. But most of all thank you for the career paths you have chosen. It isn’t easy and we desperately need people like you.

Remember, energy and joy are free!

Eulogy for Dixie G. Kincaid
November 14, 2010
Clover Community Church
Clover, WV

My name is Barbara Kincaid. Or, Barbara Kay as I’m known in these parts… I am Dixie Garrett Kincaid’s only child.

Mother was fifth in the birth order of 8 children:
· Five brothers, two sisters…
· The daughter of Loman Edgar Garrett and Losa Vineyard Garrett...
· Born on a farm that was 18 miles from Spencer on a rock-based road that I will never forget.

Her first schools were country schools with her siblings and cousins.

It was a close family in many ways – one that I with no siblings envied as I grew up. Perhaps, Lucille, Herbert, Loman, and Dixie were drawn together through the years by their interests in collecting antiques. But, they were also competitive. As 60 year olds, they would sit around the kitchen table and argue about who got the better deal during their early collecting adventures.

After high school in Spencer, Mother took a secretarial/business course in Charleston and her first job was at Vandale’s funeral home, the forerunner to Taylor-Vandale.

Extremely creative, Mother started sewing as a teenager. She first learned from her mother and her older sister Lenore. Grandmother was also most significantly her role model for kindness and decency all of her life and all of our lives as well.
My mother’s interests expanded to cooking, indoor gardening, and finally to painting which she learned and began in her sixties.

Queen of the all-nighters when she was working on a project, she was committed and relentless. Mostly self-taught, her favorite skill sets came from high school home economics. In her twenties and thirties, she was a pre-cursor to Martha Stewart. I still have Mother’s edition of Emily Post with photos of elaborate table settings and instructions for the “maid.” Dream on, Mother dear…

It seemed to me, however, that she had trouble working FOR anyone. She actually called my second employer to tell him he was working me too hard. Following that indiscretion, we exchanged a few choice words. I’m not sure my mother ever understood how inappropriate her intervention was. Miss Dixie was always right -- not to mention late.

Still she was a beautiful young and older woman. Even as a little girl, she had black hair and a big smile, the smile that my cousins and I also have. One of my favorite pictures was when she was 4 or 5, barefoot, smiling and holding her doll. Also in the picture was Uncle Richard who was roughly a year and a half younger. Wearing a sailor suit, no doubt made by hand by Grandmother, he stood very straight and looked very serious—already playing the part of good Air Force material.

Even as a 90-year-old with advancing Alzheimer’s, that little girl was with us. As I would carefully guide Mother into bed, she liked to bounce up and down on the mattress, swing her legs, and smile.

My friend Tito Piccolo called her Loretta Young, the actress and television hostess from the 50s who would swirl through the door in a glamorous gown to announce that week’s story. In her 90s -- Mother also developed the royal wave.

She liked clothes and in those early years had a good sense of style. She also understood how to repair a garment and re-make it if necessary.

Her imagination and memory were visual. She could see things as they could be.

But … by far, the most important lesson learned from my mother was her complete lack of fear about Alzheimer’s. After her diagnosis, I was a basket case and I asked if she was afraid. “No,” she said. Her time with her own mother had given her a peace about the years to come. Now, I almost understand her lack of fear. I really do. And, the first emotion I felt the morning after her death was peace. Simple, quiet peace.

Mother and Dad met in high school and were married when they were 22 and 23. They loved West Virginia. It was home. As some of you know, my father died 3 days after their 65th wedding anniversary. In the hospital as it came close to the date in 2004, I would tell him the day and date. Though he couldn’t talk at that point, I’m sure he understood and was motivated to stay alive to reach that milestone.

They were a good team working side by side in the dry cleaning business, building their house, and many other projects. He was her first caregiver and probably her best. As his health failed, he worried about her. Hospitalized with a life-threatening pneumonia in January, he held on for the move to Virginia, then for another 4 months.

Here are some of my diary notes from January 2004…

“Mother and I have been able to spend some brief time with Dad each day.

“He cries when he sees her come through the hospital room door in a wheel chair all dolled up with a mask, gloves, and clothing covers. She put make-up on independently and asked me to find her nail polish. Then she put polish on independently.

“He’s very emotional since he thought Wednesday night and Thursday morning that he was going to die… Today, he was saying, ‘You know, I think I can come out of this.’ He’s already lobbying to come home.

“Mother realizes he’s gone and sometimes remembers where he is. When she does, she’s anxious to see him. She asks: Can we go now? Why can’t we go now?

When we get there…“she tells him: ‘I think you’re better. Your eyes are brighter.’”

“He says: ‘I think I feel a little better.’”

A little later in January, I wrote…

“She was beginning to forget her life story:

“About the Michigan house that she always said she loved -- she’d ask several times a day: ‘How long have I lived here? How old am I? How long have I been with him?’ The guy she put the nail polish on for…

“Then she would look up and say: ‘Just love me.’” Just love me.

Although this journey has been difficult, complex, and frightening at times, I still believe it was important to make. It was the legacy and value system I carried from these hills: Family means you take care of your own, or least that’s what it meant to me.

Lucille Johnson did it. Herbert Garrett certainly did it. Loman Garrett took care of two dying wives. Russell took care of all of us and entertained us along the way. Sisters and best friends, Lucille and my mother, took care of Grandmother and Granddad in their final days.

We do it because it’s the right thing to do. But, we don’t do it alone. So many people have provided support and encouragement.

My cousins … Bob and Dolores Arnott. Candace (Westfall)and Kate (Burbank). Pamela’s (Garrett) touching long distance calls, though we last met when she was about three. Dear Miranda (Burbank), who was Mother’s special person.

The amazing Joan Niday, my father’s baby sister, who taught my father, the Scottish Warrior, to say, “I love you.” Uncle Ron and Aunt Jackie…

Through this journey, I have had the wonderful support of Grant Colthorp from Michigan and his wife Delores... Grant is doing today’s service as he did my father’s. Before Mother and Dad left Michigan, Grant and three other friends took care of them when I couldn’t be there.

My friend, Linda Willen from Arlington, who has been with me and others on this Alzheimer’s care-giving journey that we make together… Ann Jeffries Johnson whose desire to stand in solidarity in grief with a long-time friend brought her all the way from the Rochester NY area…

Gifts from so many… Thank you all for your kindness and generosity.

Thank you for helping me “Just Love” my mother. Remember… do not be afraid of Alzheimer’s… But do fight for a cure.

One of my last exchanges with my mother came on Thursday after her surgery and the day before she was released from the hospital.

“Barbara,” she said and she hadn’t called me Barbara in years. “Let’s get out of here!” Okay. That’s a deal! A week later things had changed dramatically and she was gone.

The souls of the departed -- Garretts and my father -- have been calling Miss Dixie as my cousin Candace put it… How could she resist? The Garrett siblings, Candace wrote, “ … loved each other no matter what.” So true. It was Mother’s time to go, 20 days after Uncle Loman. They needed her. Who knows maybe there are antiques in heaven…

The Greatest Generation of Garretts from Vineyard Ridge… Let us celebrate them. My mother was proud of her siblings and her mother and father:

· Educators and administrators…
· Farmers…
· Small business owners and homemakers…
· War heroes…
*Richard was chosen to fly over Tokyo on the day the Japanese treaty was signed.
*Loman was with George Patton through seven Army campaigns, including the Battle of the Bulge, and was awarded the Croix de Guerre for gallantry.

A remarkable legacy we’ve been given… Farewell to the Greatest Generation of Garretts. And, Godspeed, Mother dear. Godspeed.

Miss Dixie Leaves Us

Dixie Garrett Kincaid, 93, a retired small business owner from Michigan, died October 28, 2010, of complications from Alzheimer’s. She had lived in Arlington VA since 2004 after residing more than 60 years in Michigan.

The fifth of eight children of Loman Edgar and Losa Vineyard Garrett of Vineyard Ridge, Roane County, WV—Dixie was born January 14, 1917, and was the only surviving member of the Greatest Generation of Garretts. Her two younger brothers, Russell and Loman, also died in 2010. Russell had Alzheimer’s. They were preceded in death by brothers, Garland, Herbert and Richard; and sisters, Lenore and Lucille.

Like her mother, Dixie was diagnosed with late onset Alzheimer’s. Her diagnosis came in 2000, although it is likely that symptoms began at least eight years earlier.

Dixie attended business school in Charleston after graduating from high school in Spencer. Her first job was with Vandale’s Funeral Home, now called Taylor-Vandale, in Spencer. Her husband, L. Hiram, pre-deceased her in 2004 three days after their 65th wedding anniversary.

The Kincaids moved to Michigan in 1944 and in 1949 founded G & K Cleaners in St. Louis MI where they ran the business until the mid 1960s. Survivors include one daughter, Barbara K. Kincaid of Arlington VA with whom she lived, and numerous nieces and nephews in West Virginia, Ohio, Michigan, and Colorado.

Funeral services were in West Virginia November 14. The family requests that memorial gifts in lieu of flowers be made to either the Alzheimer’s Family Day Center of Fairfax, VA www.alzheimersfdc.org) or the Cure Alzheimer’s Fund, Wellesley Hills, MA (www.curealzfund.org)

Christmas 2007

I heard the shuffle of feet and then saw a little white-haired person coming toward me. Bearing a gift, Miss Dixie handed me a piece of apple. I was still in bed, sleeping more than usual as a result of the anesthetic associated with routine gall bladder surgery. Nana, our short-term nursing assistant, was doing laundry. And, Mother had broken for daylight, which she still likes to do to assert her independence.

A couple of days earlier, Miss Dixie had bolted through an outside door. I thought it was Nana going out. Mother was found quite easily this time, sitting in the car parked in the driveway.

Some of the major highlights in this year of gifts and challenges...

In February, Mother stopped walking after a hospitalization. Miraculously, she came back to walk again after home visits from a terrific geriatric physical therapist and another excellent nursing assistant, Emma. It took three and a half months, but Mother became the statistical anomaly at her Arlington day care program … the patient who was able to return to the program despite the fact that she has a progressively debilitating disease.

This journey began officially with her diagnosis of probable Alzheimer's in 2000. So, we are beginning our 8th year, my 5th year as sole caregiver in August. In January, we begin a new phase of her care since she is being discharged from her Arlington day care program. She requires too much one-on-one care for the program. At the moment, there are limited openings in the next day care phase and I am hiring a nursing assistant three days a week. (I hyperventilate at the mere mention of costs since I actually had to turn down a second contract this year because of my own health.)

This year, too, Mother has started a new form of communication. Her ability to speak is declining, so she claps her hands when she’s happy, pats people on the arm when she likes them, and has been known to hit folks when she doesn’t like them or what they are doing.

There have been adventures, too. Like the time I turned my back to take the trash out to the curb. I returned to hear water running and found the floor of her bathroom flooded along with the floors of the utility room and my bathroom and water shooting from a sink hose. When I asked why she did it, I was told that the mythical “she” had done it. The mythical she and Mother’s horse show up from time to time. One evening Mother asked where was her horse and what was she going to feed it. I think I mumbled carrots.

As for me, I’m falling apart like a cheap suit. I walk with a cane. Herniated discs in the old back have caused the most difficulty this year, but the good news is that there seems to be nothing worse than that and I am grateful.

There is no doubt that Providence was smiling kindly at us with the gift of six months in her old day care program. Our gratitude and warmest wishes to you for the coming year …

Goodness. It's been a long time since I've written. I am prompted to write now by the Alzheimer's Project which is getting a lot of publicity and is aired on HBO this weekend. The HBO project is co-sponsored by the National Institute on Aging, giving it authority on the science of Alzheimer's, etc. There is also a wonderful piece on people who receive home care in this weekend's Washington Post magazine.

Some of the events I failed to write about need a little bit of explanation at this time.

November of 2006. Mother's then neurologist noticed something from a report about her heart and decided she should go off Aricept, which was the first medication she started taking after her dementia diagnosis. I had found her lying in a closet when she should have been in bed. She, of course, had no memory of how she had gotten there. Her neurologist believed she might have fainted because of Aricept, so he wanted to take her off it.

Within a matter of weeks, it was clear that she was losing ground with her speech and overall cognitive ability. I noticed it and her day care providers noticed it.

Ms. Dixie turned 90 in January of 2007. We had a party for her and she enjoyed it.

In February of 2007, she was hospitalized. Maybe the beginning of pneumonia, definitely an obstructed bowel, and a urinary tract infection, as I recall. I had found her slumped over on a chair in the bathroom and couldn't wake her. I stupidly thought I could deal with whatever it was and tried to give her sips of water etc. for about a day before I called Mother's primary care doctor and she said, "Hospital."

Ms. Dixie was in the hospital a week. Everything fell apart in the hospital. She couldn't walk. She needed her food pureed. Her doctor wanted her to go to a skilled nursing facility to learn to walk again. Washington had a massive ice storm during this period of time and I did not get to visit the skilled nursing facility before she was transferred. I leaned on the advice of the hospital social worker, who in my view was completely unskilled about dealing with a dementia patient. (Ah, yes, there is a lot of that around.) I later wrote a fairly straight forward assessment from my perspective to her about her failures on this issue. And, to her credit she showed it to her boss and her boss called me. But, I digress...

The skilled nursing facility was completely unskilled as far as I could see. They would plop her tray in front of her. She would spill her water and they would take her water away. Yes, this happens. Here's a patient who needs hydration and these knuckleheads withhold it because she tipped their nasty flimsy water cup over. I took to faxing complaint letters to the nursing staff after every visit and kept track of the water I helped my mother drink. Within a matter of about three days, this crack operation found a reason to throw Mother back in the hospital. I was relieved since that meant I could get her out of the not-so-skilled facility. I previewed new skilled nursing facilities including one in Fairfax because I refused to have my mother go to the other facility in Arlington County that had a miserable reputation. There was a vacancy at the Jefferson in Arlington County and I was delighted. Absolutely delighted with the care.

Mother was at the Jefferson for a month and I got some rest too. In the intake interview, I had carefully explained that Mother's neurologist had taken her off Aricept because he saw some blink on a heart report that might be troublesome. My mother was put back on Aricept and I was never consulted. But, aside from being annoyed at the lack of consultation, it seemed to me that she was doing better now than before her hospitalization. Hmm. So I got a prescription as a part of the discharge process and continued Aricept despite the directive from the neurologist, who by this time, had moved away from the area anyway.

So, Mother was to be discharged to continue physical therapy at home. She couldn't walk. The discharge people were arranging for a hospital bed, wheel chair, etc. for home care. At every opportunity while Mother was in the hospital and in skilled nursing, I had asked to help with tranfers so that I could learn what to do. So, by this time I knew that it would take two people to move my mother.

I contacted the home health agency that I had heard good things about from two Alzheimer's caregivers whose opinions I trusted. Technically, I had met with the agency in the nursing facility. Oh, and guess what I learned about Mother and water glasses. Give her a nice crystal glass and she would hold it. A little bit of shake in the hand, but not too bad. The paper cups got turned over because they were too flimsy.

I also met with Hospice while Mother was in skilled nursing. I figured this was the beginning of a downhill run.

March of 2007. A wonderful caregiver, Hilda, started with us on the day of Mother's discharge and was able to get her into the car. I'm not sure I would have been able to do that...in part because my anxiety level was so high at the point. Unfortunately, the commute was too much for her and the agency brought someone else in who turned out to be wonderful as well. Emma arrived at 9 am and left at 7 pm. I was working from home or trying to.

I had always had in mind that Mother, when she was able, would go onto the next level of specialized Alzheimer's day care, which is available in our area for more advanced Alzheimer's patients.

By about May of 2007, I was able to schedule an in-take interview. Mother was still not walking by that point and she tested as requiring the center's most advanced care level. Because of staffing issues for patients at the level, openings were infrequent and there was a waiting list.

About one week later, Mother miraculously began to walk again. Unheard of. This kind of stuff does not happen in Alzheimer's care. Except, it did happen. Mother was doing well, so well in fact, that I called the nurse from her previous day care center. This center is county-sponsored and has a sliding scale fee based on income. My mother's income is extremely limited and I had been struggling with how I would pay for the advanced care from the new day care center and the agency help, though wonderful, was eating into my mother's money.

I even prayed about it. More later...

June 2004 Report to Friends and Family
Kids Arrive in Virginia

The “kids,” Dixie (age 87) and Hiram (age 88), arrived in Virginia in April. There were still some punch- list items to be finished in the house addition, but we had a roof, heating and cooling, and square footage for three inhabitants completed. We decided to drive rather than try to deal with flying, so I rented a big, old folks car and we ended up driving straight through. About 14 hours since we stopped frequently…

As we left St. Louis, we had a wonderful send-off. At 7 am, our driveway filled with cars and dear friends from Barbershoppers arrived to sing Mother and Dad on their way.

The Guys in the "Pick-up" Quartet

The fellows in the quartet and spouse Ann Hall had been instrumental in allowing Mother and Day to live independently while I got ready to receive the kids. Ray Anspaugh was Dad’s golf partner and most frequent driver to Lansing for appointments with specialists, though all four plus their spouses had helped on occasions. Ken Smith, a college science teacher, helped save Dad’s remaining eyesight in 2001 by taking him to see an optometrist, who was one of Ken’s former students. Grant Colthorp arrived at the dry cleaners more than 50 years ago as a scrawny teenager looking for a job; Dad and Grant developed a father-son bond that has lasted through the years. And, Jim “Doc” Hall regularly and routinely saved my Dad’s life over the last few years, including a bout with double pneumonia in January, 2004. Such wonderful friends and a melancholy goodbye…

My father cried most of the 50 miles to Lansing. I was so happy to finally have them coming to stay with me and his sense of loss was so tremendously painful. Getting old is just not easy. For independent souls, old age seems to attack while they are doing their thing and minding their own business. Healthy and vital until the last two years, his health spiralled down so quickly.

Week one in Virginia was dedicated to connecting with new physicians. Toward the end of 2003, Dr. Hall noticed Dad’s blood counts heading into dangerous ground. Along with Grave’s disease, he now has myelodisplastic syndrome, which makes him highly susceptible to infection and which the NIH website calls “smoldering” leukemia.

The second week, I went back to Michigan to load the moving van. Our Michigan neighbors, Deb and Dave Zimmerman, are buying the house, and they are also doing the auction of the remaining contents in the house. Dave says Dad helped him get a job early on that gave him a good start, though Dad doesn’t remember doing it. July 24th is the auction date and the likely market will be antique dealers; so, collectors, mark your calendars and rent a U-Haul. Michigan in July isn’t a bad place to be. 

Not surprisingly, we have had some challenges on the health front. Dad has had pneumonia, fluid on his lungs, four blood transfusions, has learned to dislike overnights in Arlington Hospital while he likes the outpatient transfusion center a lot. The doctor’s offices and the hospital are only four minutes from the house, so they know us at valet parking.
 
Mother has done very well on Aricept, one of the older dementia/Alzheimer’s medications; her new neurologist wants us to increase the dose, add some vitamin E, and in three months try adding Namenda which is one of the newest medications for mid-to-severe dementia.

We do mini-adventures: drive by the World War II memorial; the old house in Severna Park(MD); Uncle Herbert’s and Aunt Maude’s house in Baltimore; and through Washington’s many suburbs and surrounding areas. We’ve had one visiting couple from Michigan and are looking forward to more. Y’all come see us.

Christmas 2006

The big news is Miss Dixie turns 90 on January 14, 2007. Yes, she would love to have a card from you! Interestingly, Roane County said she turned 90 on January 13 this year. Not true, her real birthday is yet to come!

Last year she wanted to know how old she was. I told her. “Wow,” she said.

Miss Dixie is still able to attend the Arlington County Day Care program. Technically, this program is just for individuals in the early stage of dementia. Mother is in an advanced stage, but is still able to function well enough to go to “school” in Arlington County.

Despite good health -- we’ve had our moments this year: cataract surgeries (bandages ripped off within an hour), skin cancer treatment, several urinary tract infections, pneumonia, and one scary fall in October. And, we’re practically on a first name basis with the Emergency Room staff. Life is still manageable -- but, I won’t kid you, it is wearing for me.

Briefly, here’s where we are in Mother’s disease cycle: stage 6 out of 7 stages, according to the Alzheimer’s Association. She currently asks about Dad several times a day. When she doesn’t like the answer, she makes up a story. She knows my name is Barbara, but doesn’t know that I am her daughter. At night, she often worries about feeding her horse – no, that’s not a typo. She still smiles and laughs, but can no longer smile on command for the camera, for example. She can still feed herself and walk, but I expect those skills to go at any time. When they do, she will have to leave the day care program and the next phase will be more complicated.

Most of all, more nights than not, she says, “Thank you,” when I tuck her into bed. That, of course, is why I do it all.

My greatest challenge this year was a hundred year rain that flooded the IRS, the Archives, and the addition to our house. At the time, Mother was also very sick with an infection that needed a different antibiotic. The blessing was that she slept through the actual flooding while I called everyone I knew to help. Eventually, I found a pump that would do the trick of running water down the driveway. (I now own the pump.) The two-year old wood floor was removed. I was afraid of mold and installed a new floor – stone, thank you. I think I’ve figured out the problem/s, but my level of confidence was not sufficient to re-do a wood floor.

Happily, most of the angst from that event is behind us and we continue to be enormously grateful to good friends who helped us out in so many ways.

Wishing you and yours a wonderful holiday and New Year—

Love,
Dixie and Barbara

Alzheimer's Research Funding in Jeopardy!
Word came out from the Alzheimer's Association on last year in the fall, I believe, that funding for Alzheimer's research was about to be cut. My friend, Catherine Bucknam and fellow caregiver, moved quickly to provide information on the house committee chairman who's committee was about to cut funding.

Contact your own representative www.house.gov and asked him or her to request full funding for Alzheimer's research. Rep. Jerry Lewis fax number is 202 225-6498. Please do it before June 13th. You can also email Rep. Lewis, but keep in mind that zip codes from his district will have priority.

For my own part, I am trying to give as much of a face to Alzheimer's as possible by telling my story. I urge each of you to tell your stories, too.

Here's the draft of my letter:

"Full funding for dementia research is essential to the future well being of our nation. For me this is a deeply felt, personal issue. I lost my mother at some time between 2000 and 2001.

"Nonetheless, every day I wash and change urine soaked night clothes and bedding, bathe, dress, prepare meals, give medication, and provide wound care for skin ulcers for a woman who carries my mother’s name. But, she remembers no shared history, including who I am. She still smiles; someday I will still do this work and she will no longer be able to smile, feed herself, or walk. Of the daily tasks I do, only the wound care for skin ulcers are unrelated to dementia/probable Alzheimer’s.

"I have been her sole provider of care since my father’s death in 2004. All of this and I work full time with the hope that I do not become a burden to the public health system… There are no siblings or children to take care of me – an indicator of the changing demographics of this country. And, I am not alone. There are millions of family caregivers providing similar uncompensated services and more each day. Assuming the burden of care because we have hope for the future that research can bring us…

"I am grateful for the progress in the treatment of this disease over the last twenty-five years. My grandmother had it; an aunt had it. During my grandmother’s illness there were no medications like Aricept and Namenda. There were no day care centers available. Each of these progressive steps in the management of the disease has resulted from research, most often led by the federal government.

"Research is my hope! My only hope! This is an illness with ramifications far beyond the number of individuals who have this disease currently. I urge you to maintain full funding for dementia research."