What is clear from this report is that the victim loses the physical capacity to fully communicate but never do they lose cognition. I thought as much since we do know that the spirit body operates it all.
What this infers is that cognityion is not constrained by our 3d bodies. It would be really nice to have mind to mind comms available.
This is a good item that informs of the mind space of a victim.
Letters from a Vanishing Friend
What’s it like to succumb to Alzheimer’s? A woman with dementia befriended me, her teenage neighbor.
FEBRUARY 28, 2023
https://www.plough.com/en/topics/life/aging/letters-from-a-vanishing-friend
Ilaid my five-day-old baby down next to Ellen on her hospital bed. Ellen, age eighty-five, had been unresponsive for the past few days, barely eating or drinking. Her room, filled with family, caretakers, flowers, and an overpowering scented candle, seemed almost uncannily peaceful – so different from the happy energy of Ellen’s home on my many previous visits. As I sat next to her bed and held her hand, I reflected on the improbable friendship that had blossomed between my then-teenage self and the remarkable mind now trapped by Alzheimer’s – her helplessness so similar to the helplessness of my newborn daughter.
Iwas sixteen years old when our paths were placed in each other’s way. Certainly, I was not looking for a friend in her seventies, and she didn’t really need me – her six living children and their families all adored her, and her dozens of grandchildren were constantly visiting. But when she and her husband Ulrich, “Ullu,” who were old friends of my parents, moved into the apartment next to our family, they became part of our daily lives. (In a Bruderhof house, each family has their own apartment, but hall and kitchen space may be shared.) My parents expected my seven older siblings and me to show Ullu and Ellen the same love and respect we gave our grandparents, even if this translated into long Scrabble games on the nights when I had the most homework.
This wasn’t actually much of a hardship: Ellen was terrific company. She loved to laugh, and to laugh with Ellen meant being reduced to helpless wheezing. She was an attentive hostess and conversationalist, brimming with interest in her fellow humans. Evenings in our houses were for conversation, board games, reading aloud (James Thurber, Damon Runyon, the poems of Jane Kenyon), with snacks and drinks prepared and served with great courtesy by Ullu, and a revolving cast of friends joining in. It was a wonderful time, and Ellen didn’t like to see it being interrupted even for a couple of days, welcoming our family home from a weekend trip with a typed note:
Dear Marcus & Monika and every single one of you dear people,
We hope – and know – that you had a wonderful time together, but you might think again before you do this to us.
My God (excuse me) please think twice and consider our feelings. We are pretty fragile people. You can’t play around with our feelings. Will you remember that, and will you take it to heart? What if you came home and found us lying spread out on your floor, panting? Wouldn’t you feel a little bit sorry? A little remorse?
So don’t do this again lightly, at least not all of you at the same time. Leave one of you at home. What about Lisabeth? You wouldn’t miss her that much, would you? She’s not around very much anyways, and I need her more than you do.
Take this to heart. One day, like on a Sunday, might be all right, maybe. But no more than one day. And you know, I had such a longing for a game of Rummikub, even though Marcus cheats. My hand is shaking, that’s why I have to type.
Your Ellen
Considering that at the time, I was consumed by all things adolescent (music, novels, boys), it seems odd that Ellen befriended me so quickly, and I am not entirely sure why or when it happened. It may have started when my mom asked me to help Ellen clean her house every Saturday morning. Ellen would watch me work from her rocking chair, and the invariable discussion about what books I was reading made one hour quickly ooze into two. I learned never to walk into her house without an answer prepared for, “So what are you reading now?” and learned also to be prepared to be chastised if I accidentally mentioned the John Grisham novel I had just picked up, or some thrilling romance. “That’s not a book!” she would say with withering disdain, and I would once again be urged to try one of her favorites: War and Peace, The Brothers Karamazov, or Pride and Prejudice (“Someday, you too shall find your own Mr. Darcy,” she would say with a twinkle).
Or it may have begun when I started helping her count out her pills for the week – she had recently been diagnosed with Alzheimer’s on top of her existing health issues, and found sorting the myriad little pills into the pill-counter difficult. Or perhaps it was our weekly outing to the local sauna (according to her, some form of therapy), during which, despite her horrific heart condition, she would plunge into the pond’s icy water on the coldest of winter days. However it happened, Ellen somehow had a way of understanding and listening to a sixteen-year-old who was otherwise quite preoccupied with teenage drama.
I didn’t notice that as the months wore on, Ellen’s Alzheimer’s was progressing, inflicting psychological pain as a result. For all her cheer, Ellen was no stranger to suffering. Earlier in life she had lost her two youngest children: three-year-old Mark John from a brain tumor, then only seven months later two-month-old Marie Johanna due to the aftermath of a traumatic birth during which Ellen’s heart had stopped for several minutes. “I think such an experience can make you or break you, and it nearly broke me,” she wrote decades later. “My grief and pain accompanied me through the nights and the days for – well, for too long considering that I was a Christian and knew where Mark John was and that our aching loss was his unfathomable gain. Only years later I was able to let go of him and then I was able to experience that the sorrow had actually turned into a blessing for our whole family.”
Although Ellen had often told me about these two children, my inexperienced heart couldn’t comprehend how much pain their loss caused her. But this familiarity with pain helped her now as memory loss forced her to relinquish the much-loved editing work she had done for decades. Other losses followed, including our weekly visits to the sauna when she became unable to walk that far, or would forget why we were going in the first place. Yet none of this diminished our friendship.
When I left home after high school, our conversations were transformed into an exchange of letters. I kept hers, hundreds of pages typed on a manual typewriter.
Dear Lisabeth, I miss you terribly. I mourn for myself and for the dishrag I have become. Limp and damp. And it’s because the house is unbearably empty without you and your mom and dad. We were still smarting from your hegira (means “your disappearance” – I looked it up in the dictionary) and then this – your mom and dad’s hegira! My stomach was churning and my heart was beating irregularly on the eve of their departure and it has not lifted. As I write, my heart is palpitating. Maybe I’ll have a heart attack and then everybody will be sorry! (I hope).
Every once in a while, my parents would let me know how Ellen was really doing – the panicked moments of forgetfulness that became more regular; the days that she would spend in her bedroom, held down by a dark depression. But like many sufferers of Alzheimer’s, she often masked her pain well, and this daily fight with her disease mostly didn’t appear in the stream of letters, which arrived once, twice, or sometimes even three times a week.
I just finished War and Peace for the second or third time. It’s a fantastic work. I guess you’ve read it. (Or are you still reading Sue Barton, Student Nurse?? Sorry).
* * *
Today is Friday and on Wednesday night we had such a great family supper and long evening with your mom and dad. Your dad had concocted a fantastic meal, a concoction of cooked tomatoes mixed with all kinds of herbs and spices and things I can’t remember now, plus a side dish of new potatoes fresh from the ground – this might not sound special but it was. And the whole evening was special. Your dad read more from Wesley Jackson (I LOVE Wesley Jackson, especially when your dad reads) and afterwards we played, in this order, Rummi-Kub, Three-Thirteen, and then 10,000, which your mom won hands-down as she always does. But your dad and I take it for granted and don’t feel inferior – as your dad once said, “I am still a man,” which nearly broke my heart when he said it.
* * *
Lisabeth, it’s unconscionable. (I just looked up that long word in the dictionary.) I had spelled it wrong but now it’s right. I’m not sure what it means. By the way, while I was looking up the spelling in the U pages, I happened across a word that seemed to me to be of some importance – “unhouseled” – which means “not having received the Eucharist, esp. shortly before death.” Now that’s pretty serious. We have to take it to heart.
Well, that’s all I can think of for now. Auf Wiedersehen (not goodbye) my dearest and best friend. I love you.
Ellen
As time passed and I entered my early twenties, she remained the optimist; her letters always encouraged me to keep going, work harder, believe more – though they now took on a new tone. In a way, just as Ellen’s mind was taking her to an unfamiliar place, so was our friendship unexpectedly taking me to a new, deeper place of faith. Ellen’s own youthful reading had started her on a path that led her from agnostic Judaism to Christianity, and eventually to the Bruderhof. As other pillars of her life wobbled and then fell to the encroaching disease, she clung ever more tightly to these earlier foundations. She repeatedly referenced Father Zosima’s exposition on the “Great Idea” in The Brothers Karamazov – that “true security is to be found in social solidarity rather than in isolated individual effort” and that “all will suddenly understand how unnaturally they are separated from one another.” For this, “a man must set an example, and so draw men’s souls out of their solitude, and spur them to some act of brotherly love.” Such passages had convinced Ellen that living a life of brotherhood was the answer to society’s problems, and I knew she hoped that I too would find this same cause worth living for.
While I struggled along a new path towards discipleship, Ellen continued to encourage me from a place of unconquered faith:
Ullu and I have been thinking a lot about the words of Jesus to seek first the kingdom of God and then all the other things will be added. And I’m experiencing the truth and reality of that promise. When I really focus on Jesus, everything falls into the right perspective.
The thought is so great that the future kingdom can be with us, that we can be united already with God’s kingdom which is eternal, that Jesus can and wants to lead us as king here and now and in the future.
There’s so much more to write, but I’d better stop now.
And a few days later:
A P.S. to my last letter. You asked what my vision is of the kingdom of God. You know I experienced heaven while Marie Johanna was being born. I know it wasn’t the kingdom of God, but it was beautiful. It says in Revelations that when the kingdom of God breaks in on earth, “the dwelling of God will be with men, he will dwell with them, and they shall be his people, and God himself will be with them. … He will wipe away every tear from their eyes, and death will be no more, neither shall there be mourning nor crying nor pain any more.”
I can’t tell you how much that meant to me when Mark John died. I turned to those words again and again, also the well-known words in Corinthians: “Lo, I tell you a mystery, we shall not all sleep, but we shall all be changed … for the trumpet will sound and the dead will be raised imperishable,” and then the most wonderful words, “Death is swallowed up in victory. O death, where is thy sting?”
Once again, the timing of her letters was perfect: my personal faith was at full ebb as I struggled to come to terms with the neurological symptoms of Lyme meningitis, at that time a very misunderstood disease. Only Ellen seemed to comprehend what I was going through in a way that none of my peers or my parents could. At one point, her weekly letter related the message of that week’s worship meeting as an encouragement:
At our morning meeting we prayed for protection and healing according to God’s will. Michael [the minister] read the story of how Peter walked on the water toward Jesus, and when he was afraid of sinking and cried out to Jesus for help, Jesus reached out his hand. Lisabeth, you are walking on the water now, and you know that we love you dearly and pray for you for protection and healing. One of your best friends, Ellen.
Meanwhile, Ellen herself was deteriorating. Because of her heart condition, she experienced several brushes with death. “I got halfway up there once, don’t bring me back now,” she said to a doctor during one of these episodes, referring to Marie Johanna’s birth. Later, as she lay in bed with her family around her, singing their favorite hymns, my sister came in to say what she thought was goodbye. Ellen clasped her hand and whispered, “I can’t sit up now, but you’ll find a new Dorothy Sayers on the bottom shelf there.” (She recovered, and later said that she had decided she was glad to still be on earth.)
On the good days, she still came to the community’s woodworking factory for several hours to socialize with other people her age while doing simple handwork. She attended communal meals and participated in worship meetings. She visited newborn babies and held them close, singing snatches of lullabies in tiny ears. In winter, she asked to be taken sledding long after she couldn’t walk. And for as long as she could, she remained the hostess, inviting other older ladies into her home every Saturday afternoon for a weekend ice cream parlor. But eventually, even these activities gradually disappeared.
Photographs used by permission from the Bruderhof Archives.
As the Alzheimer’s progressed, Ellen’s letters, to my surprise, began to acknowledge the disease and allow me to glimpse the fear she was experiencing as her mind slipped away. I was still living away from home, and her communications betrayed small but significant changes: her frustration that she couldn’t remember what used to come naturally (looking up words in her well-worn dictionary, for example), or write her name in her characteristic script.
My most dear Lisabeth, I just got your letter and I feel just like you – it seems decades since I last saw you. I hope you’ll come home before my altzeimers (sp?) gets worse and I don’t recognize you anymore. (No joke, it’s getting worse!) I hope you’ll still love me then.
Are you still subsisting? I am barely subsisting with this horrid weather. It’s supposed to turn back to normal (normal? What is normal? For that matter, what is truth?)
Later on, she gave me a window into how she sensed her growing inability to communicate with her caregivers.
I often DON’T understand right and am known to give out false information. For that reason, whatever I say is taken with some degree of skepticism and knowing looks. They try to hide it but I can tell. They think I can’t see because they bend over and cover their mouths. I PRETEND not to see. But it hurts. After all, these are people I love and I think they “love” me. At least, that’s what they say. But I have my doubts. Sometimes I do wonder, like when I’m in the middle of saying something that I truly think is important and notice that they start conversations WHILE I AM STILL TALKING. Well, I can’t blame them. The kind of things they say to each other must carry more weight. But I’ve grown used to talking to thin air. Everybody is very polite and they LOOK as if they’re listening but I can see from their yawns that their thoughts are far away. Again, it hurts. Lisi, I have to ask you a question, and you must tell me the truth. Is it like that with you?? Are you just being polite when you seem to be listening? If so, I’ll subsist. (Is that the right word, subsist?) Are you yawning even as you read this letter?
I don’t think I answered her questions in so many words, but I can say with assurance that I wasn’t just being considerate. Our bond transcended the limited conversation she could still muster.
Nevertheless, I’m equally sure I couldn’t have always said that. Ours was not a friendship that either of us would necessarily have sought after; in a way, we were both drawn into it by the structure of our Bruderhof life. For one, we had proximity and trust – because she and Ullu and my parents had chosen to dedicate their lives to living in Christian community, our relationship budded in the intimacy that comes of sharing a fridge. The other thing we were able to share was time. In return for the practical services I provided to her, she passed on to me some of her hard-won – so very hard-won – knowledge of life. For me, Ellen wasn’t a mentor but an example and a true friend. I learned from her about essential humanness, dignity, and the capacity to endure pain and transform it into faithful love.
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Everyone comes across chances in life that can bring people together, and many encounters that could be the beginning of a friendship. Still, bonds like ours are increasingly rare. It seems that our society continues to waste tremendous wisdom by limiting intergenerational relationships. A 2016 study of twenty-five European countries reveals that young adults with friends over the age of seventy and older adults with friends under the age of thirty are minority groups within their respective age categories, and only 18 percent of the young and 31 percent of the old report two or more cross-age friendships. Findings from the United States show that young adults are more likely to live in age-homogenous accommodation than are the old, a tendency that has increased in recent years. How many friendships like the one I had with Ellen never happened because of this pattern?
“I have called you friends,” Jesus tells his disciples (John 15:15). Friendship is one of the most gracious of the Creator’s gifts, as C. S. Lewis famously said (and Ellen would have been so proud of me for quoting) – it “is unnecessary, like philosophy, like art, like the universe itself. … It has no survival value; rather it is one of those things which give value to survival.” Like all gifts, we have to be prepared to accept and use it.
The last letter I received from Ellen was in 2014, when I (now married to the Mr. Darcy whom she had foretold) moved back to the community where she lived. During her last years, we were once again neighbors, although no longer next door. Ullu had passed away, and she was living with her oldest son and his wife. By now, Ellen was transported around the community in a wheelchair, rarely speaking, a faraway look in her eyes. We still spent evenings together, but gone were the discussions of books and the clink of Rummikub tiles. In a way, we were now strangers to each other.
If you search the word “Alzheimer’s” on YouTube, you’ll find numerous videos of people who are “wakened” by a familiar experience or presence – a ballerina hearing music and dancing again, a vacant-faced man suddenly able to recognize his daughter when she replicates an activity they had enjoyed together. The faces come into focus, there are smiles of unearthly beauty and love as recognition returns. Watching such scenes, I think back to Ellen’s favorite passage from Dostoyevsky, where he points out the destructiveness of human isolation and how it is only by living together and supporting each other that we can “draw men’s souls out of their solitude” and “keep the great banner flying.” Even though Alzheimer’s had isolated Ellen and taken from her the original expressions of our friendship, our shared commitment to a life of faith kept us connected to the end.
So on that beautiful June morning, when I brought my baby to her bedside five days before she died, Ellen gave us such a moment of “wakening.” Her eyes opened, a smile filled her face: “You’re here!” She was not gone. She had been there all along. And even after her dying, she is still there – at home in the Great Idea.
So, you dear vile wretch, you try hard to make it through the day and I’ll do the same here. Some days are harder than others. It can only get better. The day when I can give you another bear hug will be a better day. I can’t wait. But until then, here’s a big hug by overseas mail. ELLEN (I can’t write in CURSIVE anymore).
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