Dementia Care: The Long Goodbye
by: Chaplain Joel E. Sund, M.Div, MSFL

Hospice and Dementia Care:

She opened her eyes and said, “I’m I in hell?” I smiled at her and told her she wasn’t. She looked at me and emphatically replied, “Well it sure seems that way!” Knowing her spirituality preference, I calmed her down by singing her favorite hymns and reciting the Scriptures she cherished. Sometime before this incident she told me that she was afraid that she wouldn’t remember who God is. I told her that God will always remember her as evidenced in the promise of Isaiah 49:16 which states, “. . . I have engraved you on the palms of my hands.” I reassured her that God encompasses her with love, is larger than her fear and looks beyond her memory issues. She said, “I certainly hope so.”

That visit was the last time Anna spoke intelligible words and sentences. When I first became her chaplain she had been on hospice and dementia care for just under two years. Her health kept deteriorating little by little which allowed her to be re-certified time after time. By the time she finally died she had been on hospice and dementia care for four years. According to her children, she had suffered with some dementia, for about six years before that. For her it was a very long goodbye to the life she had known and loved for over eighty-five years.

The Effect of Dementia on the Children:

the disease can never cross the boundaries of the soul

For Anna’s children, grandchildren and great grandchildren, it was an even longer goodbye because, unlike their mother, their memories were still intact.  It was painful for them to watch the family matriarch slowly die.  Every family member that I talked to echoed the same refrain, “I’m so glad she’s not in pain anymore.”   

For Anna’s children, grandchildren and great grandchildren, it was an even longer goodbye because, unlike their mother, their memories were still intact. It was painful for them to watch the family matriarch slowly die. Every family member that I talked to echoed the same refrain, “I’m so glad she’s not in pain anymore.”

As I dug a little deeper into their suffering I discovered that one child was extremely angry at God about his mother’s long suffering. Others were accepting of it. One of Anna’s daughters really struggled with her mom’s death in a deeply personal way. She told me how close she and her mother were. She shared some of the many things they used to do and how much she was going to miss her. She said, as she tried to explain her loss, “She’s my mom. She gave birth to me and now I have to bury her. It’s so hard to say goodbye.” Her comment reminded me about how Meagan O’Rourke reacted to her own mother’s death. In her book “The Long Goodbye” she writes, “Nothing prepared me for the loss of my mother. Even knowing that she would die did not prepare me. A mother, after all, is your entry into the world. She is the shell in which you divide and become life. Waking up in a world without her is like waking up in a world without sky: unimaginable (pg.10).” I shared that excerpt with Anna’s daughter who said, “That’s exactly how I feel.”

Some people, like Anna’s daughter, find relief knowing that there are trials and tribulations and that they’re not alone in their suffering. In her book “Praying Our Goodbyes, A Spiritual Companion Through Life’s Losses and Sorrows” Joyce Rupp sums up life’s suffering when she writes, “Every autumn reminds me of my vulnerability. It carries the truth that life is fragile, that there are no sure guarantees for a trouble-free life, that there is always some dying in living, that change is inevitable (pg.6).” So it goes for those people and their families who are suffering from dementia. The once viable and vibrant person is now sliding down a long and lonely spiral that ultimately ends in death. It can be scary.

the disease can never cross the boundaries of the soul

For Anna’s children, grandchildren and great grandchildren, it was an even longer goodbye because, unlike their mother, their memories were still intact.  It was painful for them to watch the family matriarch slowly die.  Every family member that I talked to echoed the same refrain, “I’m so glad she’s not in pain anymore.”   It was scary for Patti Davis who is the daughter of the late President Ronald Reagan. She saw firsthand her father’s decline. She writes in her book, “The Long Goodbye, Memories of My Father”, “In how many ways would we lose my father? Who would we be after years of watching him be whittled away? Alzheimer’s is a scorched Earth disease. Nothing you think will remain does.” And yet, despite what she went through with her father, Ms. Davis profoundly pens what may emotionally and spiritually help dementia victims and their families. She writes, “. . . I must also tell you that if you are with someone who has Alzheimer’s and you pay close attention – if you open wide your heart and mind – you will see that the disease can never cross the boundaries of the soul. For years I had gentle and true conversations with my father – between his soul and mine, sometimes in total silence. There will be people who say that didn’t happen, that it can’t happen, it’s just wishful fantasy. Don’t believe them (pgs.xi-xii) .”

There Are Things Dementia Can’t Take:

As I worked with Anna’s family during the year following her death I saw a lot of healing but I also saw evidence of long-suffering struggles. In an attempt to help the family work through their grief I invited them to an evening workshop I designed and presented at a local nursing home. It was simply called, The Long Goodbye. Four of the five children and their spouses attended as well as six grandchildren. They all joined in the group discussions and offered insight to those at the care facility who are still in dementia care.

Dementia/Alzheimer’s takes so much from so many. But I believe there are things that it cannot take. It cannot rob the memories of the patient’s survivors. It cannot deplete true love. It does not have the last say. Finally, I firmly believe that it cannot destroy faith. The evidence that I rely on is from the promises found in a New Testament passage. It says, “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation will be able to separate us from the love of God …”

Anna, rest in peace and in those promises of God that you held so dearly.

(“Chaplain Joel” has worked as a hospice chaplain for the past five years. He has also been a hospital and emergency room chaplain. Prior to his chaplaincy career he was a pastor/church planter for 20 years. His mother died 13 years ago from a lifelong heart ailment and his father died 12 years ago from Parkinson’s.)

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