DEMENTIA: Visiting the CLE Clinic & Beyond

Second in a 3-part series on Dementia. 
See part 1, "Dementia: What Dickens Knew" 
See part 3, Dementia: 12 Books I R3ecommend"

Not content with the diagnosis and treatment my father was receiving at his assisted living home, I made an appointment for him to have a medical evaluation at the Cleveland Clinic. This is a brief summary of our original three appointments five years ago and an update.

THE FIRST APPOINTMENT

At our first appointment at the Cleveland Clinic Center for Geriatric Medicine, we met with Dr. F, who asked Dad why he was there, what he wanted. My father, who seldom cries, said through tears that he wanted to go home.

And who could blame him. He had spent six weeks in skilled nursing, where he had been unceremoniously dropped off from a hospital analysis for a stroke, which hospital testing records show he did not have. Six weeks is how long Medicare would pay for ensuing rehab care. It was not a good place and has since been shut down.

His roommate had been dying of a painful skin cancer, and he moaned a lot. To block the noise, the staff left the man’s TV on at a volume above his moans, 24-hours a day. The fact that my father was able to sleep at all is a tribute to his incapacity for insomnia. He has always slept like the proverbial rock unlike his insomniac wife and eldest daughter.

One day, when I was visiting, the man’s son met with his father on behalf of the family, to ask him to give up treatment. The man did not want to go that route, and the son pointed out that under the doctor’s orders, he wouldn’t be able to have his nightly drink, and the son couldn’t imagine the father wanting to lead a life like that. An hour later, other family members and the doctor came in to pitch the man on giving up treatment. This whole conversation was carried on in our hearing, a thin curtain between, and when I tried to leave with Dad, I was told he had to stay in his room. Nothing was ever said about hospice or pain management, which I could not see that the man was getting beyond turning up the volume on the TV. He died a few days later, at night, in the room with my father.

After the six weeks were up, Dad had moved into an Assisted Living apartment, but he was not happy there.

Dr. F said that they would proceed slowly, set up an appointment for the next month to assess Dad’s memory loss. He told us that while Alzheimer’s could not yet be determined till autopsy, they had a battery of tests that could ascertain where in the brain the loss was occurring, and that would provide an indication of what kind of dementia we were dealing with, if that is what we were dealing with since other things cause such memory failures and too often don’t get diagnosed. Then, the third month, whatever they determined Dad was capable of, they would get set up for him to do, including going back to his home, if he wanted.

“And I want to drive,” Dad said.

“Okay,” Dr. F answered. “If you are able to do that, there is a place in Youngstown where you could go to brush up on your skills, since it has been some weeks since you have driven.”

With a touch of anger he seldom expresses, my father said, “I never had an accident or a ticket my whole life.”

And then, in a gesture and tone of kindness I will never forget, Dr. F leaned forward, placed his hand lightly on Dad’s forearm, looked him right in the eye, and said, “Mr. Kendig, no one here is criticizing your driving in the past in the least.  Never having a ticket or an accident in all those years is a very good record. What we want to do is make sure that you can manage safely now, for yourself and for others.” His calmness dissipated Dad’s irritation.

The doctor looked over Dad’s list of medications and pointed out that two could be discontinued, especially the Aricept, as they would be testing for dementia at the next appointment. He wrote orders to the home to cancel those two medications.

As we left that afternoon, my father was smiling in the cold Cleveland January sun as he said to me, “He listened to me. No one listens to me any more. He really listened.”

When we returned to the Assisted Living facility and I gave the written orders to a nurse there, she said nothing, but, I came to learn the following month, the doctor she would be handing them to was not about to listen.

THE SECOND APPOINTMENT

Dad and I first met with a psychologist, Dr. P, who was sterner and more emotionally distant than Dr. F. However, some emotion came through as he looked over the accompanying paper work from the Assisted Living institution and then looked up at me, and said in a very surprised voice, “Dr. F asked the residence to cancel the Aricept, and they have responded by doubling it.” He shook his head and went on to ask some preliminary questions of Dad. Then he described how the day would go. Basically he would be handing us off to a psychometrist  who would perform the tests that Dr. P had ordered and would later evaluate—no MRIs or scans, but series of questions and exercises that could determine where in the brain the memory loss was located. Hours of tests, with brief rests and a longish lunch break in between. 

Since I didn't  go into the testing rooms, I don’t have much to report from this day. Dad and I showed up in the waiting room and sat with families getting active sons tested for behavioral issues, a woman getting tested after an accident, and other elders like my father. Dad's psychometrist, a young woman, whisked Dad away and told me to come back at lunch time, which I did. After lunch, we returned for another hour and a half of testing, and then we left for the day with an appointment for the following month. 

THE THIRD APPOINTMENT 

Our third and final appointment, we were back in Dr. F's office. In the interim, his staff by phone had guided me through the process of enabling Dad to get off the two prescriptions which they felt were unnecessary.

Dr. F first reviewed the results of the February tests. In short, Dad clearly had mild to moderate memory loss. It was located in a different part of the brain than Alzheimer's memory loss, and Dr. F thought Dad was probably experiencing vascular dementia, from a heart attack he had had in the 1990's. Dr. F also noted that at Dad's age, the chances of developing Alzheimer's increased exponentially every five years, and the psychologist had suggested that the family contact the Alzheimer's organization for information for the future.

Meanwhile, Dr. F said Dad had been paying bills and getting to appointments and perhaps with some assistance, Dad could return to his home if he wanted.  At this point, where would he like to live? To my surprise, Dad said he wanted to stay in his Assisted Living apartment and he was content with not driving. And yet, it wasn't too surprising. He had been lonely since Mom's death, and he was appreciated as quite the character he is in his new home.

That established, Dr. F moved onto treatment. Basically his general philosophy seemed to be to avoid as much medicine as possible and to get physical exercise. It seemed simple, and though it hasn't always been, it beats a lot of side effects of medicine.

In fact, Dr. F is a well-known advocate for exercise for seniors. He asked Dad about getting exercise, and while Dad had been very active before going into the Senior Residence, he was not allowed to walk outside there. He was being considered an escape risk since his unhappy skilled nursing days and the only exercise routine there was very minimal—head rolls and finger stretching.  So the doctor wrote orders for Dad to walk a mile a day. (When we returned to the facility, the administrative nurse was actually pleased with that order and offered to walk with Dad the first week.)

And he told Dad to cut down on his eating, not to cut out anything but just cut down. I had to smile as those had been my mother's orders for Dad at many times in his life, one sandwich instead of two in his lunch box, for example. (And Dad really took the doctor's words to heart, as he had taken Mom's, and cut out all the snacks that were being perpetually served in his residence.) Dad was to return in six months and see how his health and his memory loss were going.

SIX MONTHS LATER

 

In the six month appointment that followed, the Clinic's informal memory test showed Dad holding his own, no change, as did the tests a year later. Clearly, he had some dementia, but it wasn't progressing, and he maintained his personality and his memory for the people in his life. He was walking a mile a day, and he had lost eight pounds.

FIVE YEARS LATER, an update

 

This morning, five years later, my neighbor thanked me for recommending the Cleveland Clinic for her daughter-in-law’s elderly father, whom she thought was being over-medicated by his local physician. “They took him totally off two of his medications and pointed out several others which did not have to be taken daily, as he was taking them, but only as needed. And they recommended exercise.” The family despaired that their father would ever exercise, but he shocked them all by taking up Dr. F's recommendation to walk daily. It has increased his strength so that he can get down and up and around better than before, and he feels better. They are beginning family discussions of how he would like his life to go from here.

Less medicine, more exercise:  the same recommendation Dad got seems almost too simple a prescription from such a famous institute of health...except it has worked for him and many elders. Now, at 90, Dad has gotten five good years out of that advice, when otherwise, he might have been over-medicated and bound to a walker or a wheelchair, as is almost everyone else in his residence. He has lost half a point on the memory index, but that seems great for five years. We'll take it. The bad news is that the institution has totally discouraged walking, and his weight is back up, which wouldn't be so bad in itself except his breathing is labored and he misses the walks.

He comes once or twice a week to his former house which I bought and live in and where we have dinner together and he watches the baseball game or the hopeless Browns. (Thank goodness LeBron is back.) We go to the farmer's market or a concert or to Sippo Lake, which he helped to establish as a county park in his years on the zoning board. He has been to two of his WWII biennial reunions in Cleveland and Savannah (and New Orleans coming up!) He has been to every yearly Pro-Football Hall of Fame Parade here in Canton and one of the games, and he flew on the last Honor Flight out of Canton to Washington, D.C. He sings in a choir and leads a discussion at his assisted living place; he refuses to play bingo despite entreaties to join in. 

One of my high school teachers said to me recently, "I couldn't believe it. I walked into your dad's place, and he knew me right away, said, 'Hi, Louie!'" Of course he does. He has seen nearly all of Louie's past 50 musical productions. He loved this year's production of The Adam's Family. He recalls the names of most people from his past when he sees them, including most of the 50 of the people who showed up for his 90th birthday party at Sippo Lake. And he recalls the names of few to none of the people in his residence, including the three women he plays cards with every weekday evening. 

A lot of this is luck, I know. A story on NPR this week cites a new study showing women to be more vulnerable than men to Alzheimer's, both in acquiring it and declining faster with it. And several men and women have come, worsened, and gone from Dad's residence to Memory Care and death in his time there.

So I don't mean to suggest that getting off medicine and taking a walk is going to work for everyone. As my sister was in decline with Non-Hodgkins Lymphoma, we were stunned by the unkindness of the stories of people who survived it just by believing, or by having God on their side. One acquaintance told her that her church had just "prayed away" the cancer of one congregation member. As if Daun's church-- which was bringing food, providing rides to treatment 90 minutes away, and Lord know, praying-- just weren't praying enough? If wanting to live could cure cancer, then single-parent of a beloved five-year-old Daun could have bottled and sold her struggle. But in and of itself, wanting to beat a disease is not always enough necessarily, and it is a terrible betrayal of those brave people who have not survived the disease to suggest that they just didn't try hard enough. 
 
What I do mean is that getting medical assessment is important, and not the assessment of nursing home doctors, some of whom are incredibly competent and caring (my husband's aunt had one of those), some of whom are just on the take, and some of whom are just incompetent. If you wouldn't diagnose your parent's  cancer yourself, don't diagnose their type of dementia. A news story this week cites that 60% of dementias are Alzheimer's, and 20% of them are misdiagnosed. Misdiagnosis can have terrible repercussions, as I witnessed in two devastating cases with the elderly. 

My Dad has luck and genes going for and against him when it comes to dementia. At least six of his 11 siblings have died with dementia, as did his father. Monitoring medicine and staying active has helped him for now. Dad reminds me so much of his father, whom I recall as a very quiet old Grandpa, working in his basement every day, living next door to my aunt, taking long walks, and always smiling and chuckling softly when we spoke to him, the respected elder of our family. For that memory and for whatever memory Dad has today, I remain grateful.

In my next blog, I plan to share a list of some books that have informed me in helping to care for my my dad, and before that, my mother and my sister.

DEMENTIA: What Dickens Knew

The situation is as old as a Charles Dickens’ novel, as recent as the Glenn Campbell movie, I’ll Be Me, which was broadcast on TV this past month: How best to help our relatives and friends who are beginning to show signs of memory loss. Thinking back, I was fortunate to be raised by parents who both treated their own parents with respect and assistance in their old age, as did many of their siblings and their spouses, my aunts and uncles. But as La Rouchefoucauld  once said, “Each age of life is new to us: no matter how old we are, we are troubled by inexperience,” and by the time my time rolled around to assist, fifty years had passed and the world had changed for the elderly, for all of us. For one thing, there are many more of us living longer, acquiring this debilitating disorder.

*****

Charles Dickens has over 200 elderly characters among the 3500 or so which people his novels, among which is  Little Dorrit’s Mr. Nandy, my favorite for showing how very wrong-headedly some people respond to the elderly.

Mr. Nandy is an old man who has had to commit himself to the poor house, where he is both pitied and patronized by Mr. Dorrit, who is also old and in the poor house, but who somehow considers himself better than Nandy because he is not so old. In one scene, over tea with Nandy and other people, Mr. Dorrit keeps up a running commentary about the old man’s failings, right in his hearing, as though the older man were deaf, which he clearly is not. Mr. Dorrit asks if he walks much. No, says Nandy, he’s never liked walking. (“Legs going,” Dorrit whispers to the other people present.) Mr. Dorrit offers him something to eat and on Nandy’s “not instantly replying,” Dorrit whispers, “His hearing is becoming very defective. He’ll be deaf directly.”

But the most telling exchange is this one when Dorrit asks Nandy how old his younger grandchild is:

“John Edward,” said the pensioner, slowly laying down his knife and fork to consider. “How old sir? Let me think now.”

“[Dorrit]…tapped his forehead (‘Memory weak.’)”

“John Edward, sir? Well, I really forget. I couldn’t say at this minute, sir whether it’s two and two months, or whether it’s two and five months. It’s one or the other.”

“Don’t distress yourself by worrying your mind about it,” he returned, with infinite forbearance. (“Faculties evidently decaying—old man rusts in the life he leads.”)

Whew, if a grandparent’s inability to recall immediately the exact age to the month of each grandchild is the test of mental decay, most of us are in deep trouble.  

***

Mr. Dorrit reminded me of the nursing home doctor I encountered when I first flew in to find my father, who had been unceremoniously dumped there the week before by a relative. Just two weeks before that, my 84-year old father had visited me in Boston, walked all of Plimoth Plantation with me, and spoken kindly to the Harvard administrators and Michigan tourists at our Thanksgiving table. Now, he was sitting in a dark nursing home at 1:00 p.m., bleary and trying to stay awake through what seemed like a drug-induced state.

“Your father is so far gone with Alzheimer’s that I don’t even know if Aricept will help, but I got him on it right away,” the doctor glared at me.

“Alzheimer’s?” I asked. “Are you sure? My grandfather had this type of dementia and it doesn’t seem like Alzheimer’s to me.”

Dad had fallen asleep, so the doctor shouted, “Russ, what did you have for lunch?” He shook Dad and repeated the question. Dad, roused himself and looked up, ginning through his memory as though through cotton bolls and replied, “I…I can’t quite recall.”

The doctor turned to me, triumphant, “You see right there: if he can’t remember what he had for lunch, that shows that he has Alzheimer’s.”

Oh honey, if not remembering what you had for lunch immediately upon waking up is the diagnosis for Alzheimer’s, then most six to sixty year olds have it. I thought there might be a more scientific way to a diagnosis. And yet, I can’t tell you how many of my friends self-diagnose their parents’ and others’ dementia as Alzheimer’s, even though they wouldn’t diagnose skin cancer without a medical opinion. There are many kinds of dementia, many stages and ways to approach it. Many doctors are as untrained and insensitive as the public on the issues.

Then the doctor said, “And if you even try to remove your father from this place, I will lock him up so tight, you will never see him.”

As the adult child who had taken the primary care for my parents for the previous 15 years, the only adult child to show up for every out-patient operation and hospitalization, whether I lived two hours away or thirteen, his words absolutely stunned me. However, my parents had never signed medically proxy papers, so my fifteen years didn’t count for anything. I was terrified.

At the urging of my great high school friend Linda Ecksmith, I made an appointment with the Cleveland Clinic Geriatric Medicine Department for an evaluation and management plan. Linda had done a lot of research and made an appointment there with Dr. F for her mother, whose condition was not related to memory loss. I mention this to show that the department is not only about issues of memory loss but the full range of health and disease for the elderly. 

If you aren’t close to the Cleveland Clinic, you can find referrals for good geriatrics referrals at Health in Aging

My father was thrilled: the Cleveland Clinic had saved his eyesight 60 years earlier when, as a welder, he had gotten a piece of steel in his eye. He revered the place. And, my Cleveland nurse friend poet Mary Chadborne told me, the Geriatric Department would medically access the situation, speak to the whole family, and help us through now and whatever stage came next.

In my next blog ("Dementia: The Cleveland Clinic and Beyond") I will briefly outline what went on in our three monthly appointments at the Geriatric Medicine Clinic, update my Dad's situation today, five years later. After that,  I will post a list of some good books (Dementia: 12 Books ) I've read over the past ten years on the subject of aging in America. I include Little Dorrit where Mr. Nandy, while a minor character, is such a character. So is my dad.