May you have a blessed Passover and Good Friday. So alike. God and miracles. For us. Amazing grace that saved a bum like me. No false humility. Just the truth. ❤️🙏🏽✡️✝️
I really like the word conundrum, because it sounds like its meaning….a quandary, a confusing and difficult problem. Well, I have a whopper. So I attended a Teepa Snow training dementia session for prospective coaches in order to train their employees how better to interact with people living with dementia. I have never seen better training anywhere. She is brilliant, committed, tireless and loves and respects demented folks. That is clearly not my conundrum. More on the conference later. I was sitting at a table with three other participants in the training, and Ms. Snow put up a diagram on the screen and asked us to count how many squares were created by the crossing lines. I’m good. I’m on it. After a moment when I wondered why my classmates were taking so long, I blurted “18”. My pride temperature was 102.5. After a pause, which seemed too long, one of my table partners said 46, and the next said 54. I was a lot, a lot wrong. Man, I was sure I was right. Not pretty sure, but bet $2,000.00 sure. This is dementia for sure. It’s really a quandary because when you’re dementia sure, you are unable, or feel no need, to see it from anyone else’s perspective. I learned at the conference that there is a part of the brain that handles this kind of perspective in b12 or my degree of self awareness of dementia. But, is there a decision or an argument where I’m right-I mean actually right-and others actually are wrong? That was pretty common in my lawyer and principal days. Maybe not pretty common, but common enough that holding my position would turn benefits. All my people reading skills were top notch. How do I tell the difference? So, what’s the test for self bullshitting of the dementia kind? That is the conundrum. If you’re fooling your dementia self, checking whether you are fooling yourself seems (duh) inherently suspect.
My first thought is to check with others whom I trust and love. But they have their own agendas (valid or irrelevant) and then we are right back to the beginning on whom or what to trust. So the conundrum is, how do you find real truth without the lure of false truth infecting the search-between being really right and ‘dementia right’(whichiswrongbutseemsreallyright)? Oneidea:Theintensityof false truth is different, more boundless, more pure in its feel. But that is really hard to discern from a real certainty and legitimate self-confidence; especially under pressure of emotional corruption like competition, failing self worth, pride, and confusion about who we have become-distinctly different from who we were in the world. Maybe my buddies Richard or Danny Brown? Their agenda for pushing me one way or another are without prejudice and only subject to their own analysis and their own inherent gaps in their brains. But a way better option, I think. But, God is the best. You obviously must believe- which I do-that God communicates with us through our heart, spirit and what I call “brain whispers”. What’s best is that God is 100%,not just for you but 100% that he wants you to do the right thing. His intervention is, however, not always right away. You have to slow down and wait for the answer, for wisdom, while fully assured you will receive it. Looking for God with your whole heart is another way to say it. So the sacrifice for truth? Slow your ass down and wait. I’m good with that. I need to slow down and not pretend that I can go so hard, so fast with dementia-even though I’m really, really, sure I can. LOL.
Love You – To the Moon and Back Mrs. Doris Moon, who was married to Mr. George Moon for over fifty years, was, at this moment, sitting in the one floor, 60 bed, nursing home. She was in the TV room. I was going to share that despite the large, flat screen TV, the room seemed hardly ubiquitous. One third of the room was the combo office of the activities director and the janitorial staff-including all the necessary supplies for both operations. Mrs. Moon chose to sit in a single sitting chair, which she said was her favorite. When she sat down, she undid her guard belt which is used to prevent falls. “I don’t know where I am. I don’t know why I’m here, and what I do next.” She had ivory white hair that matched her skin. She began to wrinkle her face and look scared and lost, starting to panic from the disorientation. “Can I sit down, Mrs. Moon?” I asked. “What? I can’t hear.” she replied. “Mrs. Moon, can I sit down?” pointing to the empty chair that I brought with me from across the room. “I suppose.” she said, barely positive enough to back her up on her permission, thin as it may have been. “I know your daughter, Deloris” I said. She often sat with her mom at the next table in church. “She is a good girl, very smart”. Me: “What does she do?” “Bookkeeper. She had to pick up papers in Georgia and Florida. Do you know my husband, George Moom? He’s asleep upstairs. We’ve been married nearly fifty years. Do you know my son, Dennis? He is fourteen years older than Deloris. I was born October 21, 1923.” I had a plastic ball which we handed back and forth without much interest or fanfare. But she smiled incandescently when I slowly convinced her to listen to some Perry Como music on my iPhone with Pandora. “Do you know my husband, George Moon?” “You’ve told me about him, Mrs. Moon, but I never met him” I replied. “What did he do?” “Mostly be in the woods doing one thing or another. I always cut the lawn. Do you know my daughter, Deloris?” “Yes I do. She comes to church here at the nursing home.” “Yes, we go every Sunday.”
Mrs. Moon would chew on her false teeth and they would half drop out of her mouth. Sort of like the basketball player, Stephen Curry, who chews on his mouthguard at every opportunity. “Do you know my son, Dennis? He is fourteen years older than my daughter.” “No, I don’t. But it’s Doris, Deloris, Dennis, and I’m Dallas.” This made her giggle. “All Ds” she said. “Yes.” I replied. “You know my husband George Moon, don’t you? We’ve been married almost fifty years”. “No, but I bet he was a good man”. “Yes, he was. Is.” When she is sad, Mrs. Moon want stop go home. She doesn’t remember where her room is, bu maybe it’s on the second floor. “Do you know my husband, George Moon?” she asked with her teeth dancing just above her jaw line. “Come play bingo with us, Mrs. Moon” I said. “No, never play”. “Oh, come watch, sit next to me.” Conversations are almost always about George Moon and Deloris and Dennis so folks don’t really get to know her so much. She sat next to me, just watching until she started telling her neighbor whether she had the called number on her card. Ella was using three cards, and I was thunderbolt struck when Mrs. Moon scoped three cards from a sidewards glance in milliseconds after the number was called. I gave her her own card in the final championship cover-all game. She won third prize and the rest of the folks clapped for her first victory. She shined joy. She won a painted pumpkin which she asked me why she had about 2 minutes after it had been presented to her. “You know my husband, George Moon?” “No, Mrs. Moon but I think your daughter got her brains from you.” “I hope so” she said, seemingly to consider the possibility for the first time. “You know my husband, George Moon?” “I believe I do, Mrs. Moon. I believe I do.
An Open Letter From The Dementia World
Dear Spiritual Leaders,
In my last year of seminary, I sat on a bench in the hospital’s waiting area to absorb the news that I had dementia. I became deeply concerned that I would ultimately forget who God is. While sitting there, my cell phone rang and it was the chimney guy, Dave. I don’t remember how it came to this, but I started sobbing. In response to a possibly life changing question, Dave said to me, “You won’t forget God. My dad had Alzheimer’s and on his death bed he praised God clearly and fervently.” I said thank you and hung up, reassured from a random business call from the chimney guy. Months later, he was across the room in a church that I attended for the first time.
My uncle had a stroke and dementia and I was his caregiver for nine years. He contracted pneumonia and died because he couldn’t breathe. In his last hours it was the 23rd Psalm, “Though I walk through the valley of death, I will fear no evil because you are with me,” that brought him peace, not music or morphine. I later confirmed that it was his favorite verse by way of his funeral instructions. I witnessed his last breath which was peaceful beyond understanding.
At the nursing home’s Sunday services, close to eight folks who seldom spoke, whom couldn’t see or hear, were incontinent, in wheel chairs and wheel chair beds would sing along to the old hymns. This was not just in memory but also in joy.
There are issues important to folks with dementia attending church in the church building. Hypercognitive services will leave us outside, of course. My favorite was being scared of communion because I couldn’t remember which chalice was for what, aaah. It is necessary to remind us all, dementia or not, that God doesn’t forget us whatever circumstances or wherever we are on our spiritual path. The cry that we will not forget God is the one non-negotiable aspect in serving those with any type of dementia in any stage of progression.
How is it that we can forget who our children are, who our spouse is, what year it is and where we are but we don’t forget who God is? How are we able to be comforted by a touch that is felt by our spirit and our soul, without relying on our minds and bodies which are unhelpful in making a spiritual connection with
Allow me to just go a few more steps in depth on this point. Christine
Brydon, a groundbreaking dementia advocate who also had dementia, said in her book “Dancing with Dementia,” ‘Each person with dementia is traveling a journey deep into the core of their spirit, away from the complex cognitive outer layer that once defined them through their life experiences, into the center of their being, in what truly gives them meaning in life.’ (Dancing with Dementia, Christine Brydon, Page 11.) Her conclusion took the sting out of being diagnosed with dementia and redefine it as a disease of opportunity.
When we lose more and more of our cognitive selves, it gives our spirits and souls a chance to be rediscovered, examined, healed and cleaned – shifting our priorities from deadlines and worry to peace, joy, reconciliation and forgiveness.
Mourning the cognitive self is not only fruitless but progressively fades in importance as the journey continues. Elaine at the nursing home said it best, “It’s not really important what we have forgotten, it’s important what we can’t forget.”
God without distractions – how great is that? This miracle of friendship with God to explore grace and mercy cleaning up your ugliness in partnership with the maker of the universe is so incomprehensible. How good is it that our spirit and soul remain unaffected by dementia – our minds ravaged and our bodies confused, but our communication with God untouched?
Let us not be confused about the genesis of communication, because hymns
– music generally and ritual prayer also dodge the dementia bullet. My take – God preserves this byway to the soul and spirit. Feelings of guilt, regret, fear, sorrow and sense of humor are likewise not erased.
The touch of God – even up to the last seconds in life, is known by families and professionals. The soul can erupt into cognitive awareness to momentarily connect with the bedside family where it has not happened like that in months or even years. It is surprising to the ones who witness this but not the one dying with the disease. The spiritual super structure is immune from this disease. Others may say it better, but those in any type of ministry, including those caring for hospice patients, need to reaffirm that cognitive emptiness or deficiency does not equate to spiritual or soul emptiness. Unaware perhaps, bruised by the world for sure but ever existing.
What does this mean for care of the cognitively impaired folks? Most obviously, soul care is mandatory inside or outside of a nursing home. “The physical brain does not create consciousness. Dementia does not affect the soul any more than an infant’s inability to talk or think logically.” (Reverend James
Ellor, Professor – Baylor University).
“In forty years, I’ve never run into anyone who cared about a person (with
Alzheimer’s) who would say that the soul departed prior to death.” (What Alzheimer’s Disease Teaches Us About The Soul, Jennifer Graham – August 16, 2016). “Consider the light of the lamp. Though an external object may interfere with its radiance (Dementia), the light itself continues to shine with undiminished power.” (Baha’u’llah, *** from the writing of Baha’u’llah pages 153 – 154.)
To be clear, many do not agree. The late philosopher, Paul Edwards (Alzheimer’s Argument Against The Soul), believes the soul is merely a function of the brain. A caregiver was quoted as saying, “Before this happened, I had become fairly cynical about the human vegetables I care for. Now I understand that I am caring for nurslings of immortality.” (Do Alzheimer’s/Dementia Prove the Soul Doesn’t Exist, Tara Macisaac – September 2, 2014.) “We remember him so that we can know a true hope in the midst of what seems hopeless second forgetting.” (Dr. Benjamin Mast (Zonderzvon) – 2014.)
I have not addressed the spiritual needs of caregivers – family or professional. The battle is the same – what one believes affects how one cares for someone. Whether I am truly a vegetable or if I am truly still with spirit and soul,
defines my care as well as the spirit and soul of the caregiver.