I imagine most of us have a fear of losing our wits, our mental cohesion, our grip on reality (or "reality") in old age. Alzheimer's disease is surely almost as feared as cancer, and for me, more so. I've watched people waste away and die from cancer, and I've watched people lose themselves and their place in the world through dementia. And I watched my dad decline both physically and eventually mentally with Parkinson's disease. In the face of all that, the most difficult for me as a witness to the diseases was to see and accept the mental decline.
The people who scared me were not those in physical pain and despair -- for that I have only heavy tears of sadness and a stone in my stomach -- but those succumbing to confusion, to doubts, to wariness and fear, those who seemed no longer the people I knew. Even in the awful throes of physical disease, people are generally still themselves. Losing the "person," the soul, the essence of the person you love is horrific. And I fear it more than physical pain. I fear the isolation. And to be sure, I am a serious introvert, and yet this is a whole different type of isolation.
I took this picture at the care facility run by Alzheimer's Dementia Namibia (ADN), and to me it is a portrait of Alzheimer's itself, as well as other forms of dementia. A person left isolated and looking out at the world alone through the small doors and windows left in the wall their own mind has built. To me, this is perhaps the most melancholy picture I've ever taken.
Berrie Holtzhausen, the subject of the upcoming film I've been a part of, The African Witchfinder, whom I am honored to call my friend, through the nonprofit organization ADN, founded, built and staffs the first and currently only care facility specifically designed for Alzheimer's patients in the country of Namibia. However, this tale is not his tale about how he came about founding it (he's not a medical doctor, or doctor of any kind, which is what makes it interesting). What this brief Tuesday Tale is about is my own experience visiting the care facility, which lies on a beautiful, expansive tract of land outside of Swapkopmund. This is no white-walled hospital-like building with sterile block rooms and long sterile corridors that echo when you talk, no ammonia-scented floors and pitifully small courtyard for fresh air with a tree and table, surrounded by other buildings and urbanity. No, this place is an oasis, a sanctuary in the beautiful Namib desert with nothing but wide open space to see from its porches, and a large dome of clear sky above it.
This is the view from the back patio. No sense of confinement. Simply the sight of wide open spaces has been proven to be beneficial to one's mental health and well-being. Plus all this fresh air!
Berrie has independently researched how to make a floor plan, how to paint the rooms in colors that best accommodate the special mental limitations and perceptions of Alzheimer's patients. The caretakers are intensely vetted. The place is arranged to suit the individual patients therein as best as possible, to cater to their idiosyncrasies whenever it's not disruptive to the other patients.
I visited this care home with Berrie, Susanne (writing a Ph.D. dissertation on dementia and witchcraft in Africa), and the film crew of The African Witchfinder. Berrie calls it a "dementia farm" ... I think farm simply refers to the large tract of land. We talked with some of the staff and interacted with some of the patients.
I started writing this with the vision of brevity but I can tell at this point, that it's not going to turn out that way.
I've let this Tuesday Tale section on my blog lapse into a section added to only upon inspiration rather than a dedication to weekly dispatches. I felt the inspiration for today's addition based upon an email I received last week from Berrie telling me about a patient there who hadn't spoken a word in well over a year. Not one word that any staff had ever noticed, anyway. Then suddenly last week, while Augusta, the head of staff, was sitting with her, she spoke while staring intently at the wall before her. She said, "Look there!"
Just a few minutes later, her husband called Augusta from 600 kilometers away across the country and asked if his wife was OK.
"Yes, of course," Augusta said, still recovering from the surprise of hearing the wife's voice. "Why?"
The husband had been sleeping and awoke to the sound of someone calling his name. He was convinced that it was her voice, it sounded just like it. He worried then that something was not okay with her. It seems a loved-one's voice can be heard across an impossible distance.
Berrie often says that perhaps it is the people with dementia who know the most about the world, who have tapped into things the rest of us cannot see, feel, or fathom. He and I differ in that he sees this inherently optimistically and I don't, necessarily, or at least not always. I think it's interesting and downright fascinating in an academic sort of way how the brain can perceive different levels of reality, but I'm not sure I agree that in terms of our human existence here on planet Earth in *this* dimension that it's always an asset or a blessing to be trapped beyond or outside of it.
I wasn't feeling too keen on visiting the dementia farm (I'll call it that, too, because it sounds more dignified to me than "facility" for a person to call their home). I've been to enough nursing homes visiting elderly relatives to feel very uncomfortable in them ... I feel confused and overwhelmed surrounded by people I can't understand or fathom, many of whom have been all but abandoned by their families and friends, their lives often seem to lack dignity and they look demoralized and isolated.
But what a different setting here in Namibia where Berrie has put such thought and love into providing the best care for these patients. There is a high caretaker-to-patient ratio (I believe currently 4 staff each shift for 17 patients) and they live on-site, not commuting in each day from the city. I spoke with some of the staff and the film crew interviewed others, and I was so touched by their dedication, their genuine desire to be exactly where they are, doing exactly what they are doing. They have a commitment and compassion that is total, to where it’s like they are sharing Berries’ mission, his vision. They are devoted to their patients' happiness and well-being. If it's worth mentioning in a country once part of Apartheid, the caretakers are all black and the patients all white. Race is irrelevant to true compassion. (But race is relevant to financial resources, wherein such a custom-built, state-of-the-art facility who pays their staff deservedly well needs a bulky income, which mostly only white people in Namibia can afford to support.)
And the caretakers all came to the farm believing in witchcraft, believing the patients were bewitched and they felt scared to death to be around them. But they needed work, and as they became educated through ADN and Berrie's efforts, they have come to both disavow witchcraft and learn the special needs of Alzheimer's patients, how to work with them with love and respect. It's really inspiring, compared to so many nurses in American nursing homes who are just there to take home a paycheck and couldn't give two figs about the patients.
It was such an epiphany to these caretakers that the dementia patients were real people who deserved happiness and not to suffer. If you have read my other entries about witchcraft and dementia in Namibia (see the Namibia II archive for a listing), then you will know how rare and difficult this epiphany is to come by. It’s just plain beautiful how they have been so profoundly affected by their acquired understanding of the biology behind mental illness. At least one, Cristophine, has dreams of building a care home like this one in her own native community.
I was still a little freaked out by some of the behaviors we witnessed from the patients. One woman was sitting at a table just moaning and holding her head. I feared she was in some kind of terrible pain, but the caretaker said that's just what she does a lot. But she was standing near by in case the woman did need something.
Another woman without teeth (she probably had dentures that she wasn't wearing) tried to have a conversation with me. She was super nice and not acting weird or anything, but I had a devil of a time understanding her because of her mouth, and because unlike with other people where you could kind of surmise what they might be saying even if their diction is poor, with this woman it wasn't easy to follow her line of thought. (and also English was her second language behind Afrikaans) But mostly she was just trying to tell me about her childhood. After awhile I realized that I needn't feel awkward if I couldn't understand, for she was happy just to stand next to me and talk, accepting my feeble replies of "oh!" "nice" "uh-huh" "wow" etc. Whenever I did clearly understand something, I made a point to ask a follow-up question about it. Here she is working on a coloring book. A caretaker told me it's one of her favorite activities, that and knitting, if I recall correctly.
While the film crew was trying to interview Berrie out on the patio about the establishment of the farm, a man in a room whose window was near the patio kept bursting out at regular intervals in wordless moans, but not just moans, more like someone had just poked him with a hot iron or something. Very loud and distracting ... not only because it was interfering with the sound in the interview, but I just felt so bad wondering what was distressing this man. But like the moaning woman, this is apparently his typical behavior and no one truly knows what thoughts or feelings cause these clockwork outbursts.
What I loved most was just seeing Berrie interact with the patients. He greeted them with bear hugs and hello-how-are-you's even though most of them couldn't give a meaningful reply to "how are you?" He treats them like "normal" people, not like the "strange" people they seem to me. No patronizing tones of speech as you hear so often in nursing homes, no treating them like children. He put on some music in the main common room where many of the patients were sitting, and then coaxed some of them to dance with him. Susanne also danced with them and the woman she danced with was having an absolute ball of a time. I just loved it.
Later, Susanne and I talked with her dance partner and another woman who were sitting next to each other on the couch as if they were best friends. For awhile I was genuinely confused as to why they were there. Compared to the other patients, moaning or groaning or singing or staring or sleeping or saying things I couldn't understand, they seemed utterly coherent and grounded in reality. We talked for quite awhile about their pasts and their husbands, where they used to live and what they did. It was really inflaming my curiosity as to why they were there when they seemed to have such mild symptoms compared to the other patients.
One of them simply had difficulty retrieving words from her memory; she was obviously well-educated and knew what she wanted to say but could not put her finger on the right word a lot of times, but she'd just say that -- "I can't think of the word, sorry" -- and move on.
The other woman, the free-spirited dancing lady, seemed to have no problem with vocabulary and chatted on and on, and eventually said something about her husband that prompted her to make a joke: "Can you imagine if men had to have the babies? Where would the baby come out of?"
It was genuinely funny when she said it, and we all had a good laugh. Then it was as if she reached the end of her record and it was set on replay. She started saying the exact same things -- and by "exact" I mean word for word -- she had just said and ended with the exact same joke and laughed herself just as hard as if it was the first time. I laughed again out of politeness.
The third time the joke came around to her knee-slapping laughter, it was more difficult for me to summon a full-on laugh over a polite smile. Now I knew why she was there. I wondered how many records she had available in her mind to play, and if the loops would be of similar length (how long she would talk on the topic before beginning over again).
But my favorite character, and truth be told, perhaps Berrie's as well, is Hein. While we were conducting the interview on the patio, Hein needed to be chaperoned around the grounds by a caretaker to keep his attention away from the patio. We closed the doors to it to keep people from wandering out and meandering through the film shoot. But Hein cannot abide by a closed door and will freak out -- he has to be able to pass through all the doors if he wants to. He walks constantly. He barely sleeps. He walks or is doing something on his feet constantly. He "escaped" the fenced-in farm once and walked for miles and miles across the open desert plain.
He also likes to pretend he’s driving a car (it's not pretending to him, of course), and he uses random things as the key and steering wheel and gear shift (such as a broomstick for that one). Once, he got in the driver's seat of Berrie's vehicle and refused to get out. He was using the biscuit he’d been eating as the key.
He seemed relatively content as long as he could keep moving. He only spoke Afrikaans, so when Berrie talked to him I couldn't understand him in any case, but I guess he's not too coherent most of the time. He would answer with a hearty "fine" whenever Berrie asked how he was, though. And then he walked and walked. Special care has to be taken each time somebody enters or leaves the farm, taking care that the gate to the tall chain-link fence is well-secured or else Hein will maneuver out and be off over the hills.
One time I saw one of the ladies pat one of the men on the bum in passing.
So they are not simply loony, crazy people living there. They are people with personalities, idiosyncrasies, loveable quirks, and yes, distressing behaviors, but they're real human beings even if not the ones that they were for most of their earlier lives. Visiting ADN's dementia farm gifted me with a valuable lesson in human dignity -- that granting this dignity to dementia patients means not simply keeping them fed and clean and healthy and occupied, but treating them in your heart and mind and words as you would have treated their former selves when they made sense to you. Just because their words and actions no longer make sense to us, they are still living in their own form of reality and it's no less valid than the one we live in. And rather than writing them off as crazy and isolating them from our empathy, we should simply try to bridge that abyss and meet them inside of their reality.
And what lovely little gems we will find.