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.