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!