Anyone who lives with dementia must learn to ride emotional roller coasters. The rises and dips, twists and turns, happen abruptly and without warning. Behaviors and moods of people with Alzheimer’s disease or other forms of dementia can dramatically change in a split second.
Caregivers know the experience well! A smile instantly turns to a scowl. Cooperation suddenly pivots to conflict. Calm explodes into rage. Affection gives way to rejection. Coherence suddenly gets shattered by confusion.
Sometimes the ride is exhilarating as an unexpected smile or moment of recognition appears. Other times the ride takes a plunge into the abyss of grief or turns sharply toward more confusion. Then, there are periods when the journey plateaus and moves ahead with relative calm and predictability.
But riding roller coasters is exhausting, even dangerous! I’m still learning and sometimes all I can do is hold on for dear life and brace myself for the final plunge downward. Yet, I’ve learned a few lessons.
One, don’t ride the rollercoaster by yourself! I need other people with me. . .to hold onto. . .to scream with me. . .to comfort me! We need others to steady us enduring the ups and downs, the twists and turns. And, it’s comforting to know that others are on the ride with you.
Two, scream when you feel like it! Screams are laments. Laments are not only therapeutic; they are the forerunners of hope. They are the weeping of the night in preparation for the joy that comes in the morning.
Three, relish each moment rather than fear the next twist or turn or dip. Learning to live in the present moment isn’t easy but it’s the only real time for those with dementia. Each moment contains potential life, love, and connection. Grab it before it’s gone!
Four, reach out and touch! A gentle touch or embrace of the one trapped in dementia’s turbulence brings solace to both. Touch communicates when words fail and thoughts flee.
Five, look up! The roller coaster isn’t the total reality. The sun and stars remain in their course. There is a world beyond the tumult of the present.
Six, sing! Music harmonizes, calms, inspires, touches deep places in the heart when the brain falters.
Seven, laugh! As the poet Robert Frost said, “If we couldn’t laugh, we would go insane!”
Eight, trust the permanence of love! “The steadfast love of the Lord never ceases; his mercies never come to an end” (Lamentations 3:22). God’s love never ends. Neither does ours!
Love does more than survive roller coaster rides; love grows stronger through the ups and downs, the twists and turns. So, hold on tight to love!
Shifting Margins 
This is a wonderful ministry.
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Thank you! Taking care of my 94 years old mom who is in great physical shape and has dementia. Challenging
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Oh My! God’s love in action.
Peace.
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Wonderful blog! Your accurate depiction of life with a loved one with Alzheimers is spot on! Your advise is equally as beneficial. When my formerly brilliant Mom was reduced to “yup” and “nope” as the sum total of her audible responses, we would sing and she could “remember” the lyrics. Those were special days. Thank you Bishop Carder for your uplifting messages of hope and love.
Pastor Vickie
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So true! I just treasure the moments when I get a peep of the man I married! And I thank God for letting me see him. Take care, my friend.
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Thank you, Ken, for these extraordinary words and your extraordinary devotion and witness.
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Thanks Bishop, I too, and dealing with a spouse that has this dreaded disease – The fact that at the end of this earthly life there will come a time where all of this will be gone is what keeps me trying to comfort and protect her – I don’t understand anything about her world but one day that too will all be gone.
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Don’t forget to laugh. My mama’s last night on this Earth was punctuated by a big giggle when my son told her a joke. She also loved knock knock jokes and funny songs. Great article. Thank you.
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By all means, laugh! Thank you for the reminder!
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Thank. You Bishop Carder. My husband, a retired UM Elder, has Parkinson’s Dementia. I am still looking for a group to wLk beside/with us.
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Please let me know if there are ways I can walk with you.
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God bless you. Please pray for me to have more patience and wisdom to know when he seems to but does not understand me. Also, more tolerance for the UMC we are part of. They have no congregational care Ministry. We live in the City of St. Louis.
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Have you talked with the local Alzheimer’s Association? They provide resources for all types of dementia. I have found support groups to be very important.
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Good morning Bishop. I am currently looking for a Support .group through The Alzheimer’s Association. In March Wayne and I will be attending an early Dementia class sponsored by them. Wayne’s Dementia came shortly after his PD diagnosis, which is unusual.
My reference to the UM Church we attend, Grace UMC, was perhaps not germane, however, congregational care is not one of their strong points. There are no small groups and no follow up with absentees. (“Blest Be the Tie that binds” is my theme song!)
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Thank you for sharing. Regrettably, many local congregations fail to provide the support needed by people with various forms of dementia. John Swinton is right, “The tragedy is not that people with dementia forget; it is that they are forgotten!”
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Thank you Bishop Carder for taking time for me.You are very discerning and compassionate.
Born in a Methodist Parsonage, Wife of and Mother of UM Elders, I will always be a
Methodist……right down to the tips of my toes.
Thank you for witnessing to the sanctity of the Marriage Covenant. You and your still lovely wife are in my prayers.
Thank you again.
Elaine Kidwell
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