The Grief of Alzheimer's Disease
I am reaching ... but I can't reach you.
© Betty Sue Eaton
We all know how we grieve for a loved one who has passed on. But how do you grieve for a
loved one who is dead to you but still lives? Many families of victims of a number of infirmities
face that very task seemingly more and more often. Comatose patients, Lou Gehrig's
disease, Multiple Sclerosis, and far too many other illnesses fall into that category and none
as yet has a cure. Since the identification of Alzheimer's as a disease and not just geriatric
senility, we have come to understand the slow death of the mind long before the body ceases
to function.

I want to tell you about Marilyn and John. She was a vibrant woman about 55, rather plump,
blonde, and totally loved the Lord. John worked together with my husband for several years,
and we were together in a political action movement called People For the West. However, I
never really came to know Marilyn until my son became critically ill with cancer. When she
learned of him, she asked me over for coffee and prayer showing me the candle she had lit
for him on her Bible stand in the music room where it remained with her prayer vigil until his
death two years and eight months later.

During that time, she and I became very good friends having lunch together often. The last
time we got together, she was a little remote and distant toward me and I couldn't understand
what I had said or done to upset her. Shortly after that meeting, my husband and I moved to
Utah and we drifted farther apart with me still wondering about her. Several months later, I
received an e-mail from John telling me that Marilyn had been diagnosed with Alzheimer's
disease. I was crushed! I couldn't think of how to console him or offer help in any way. I was
helpless to help our friends.

Our correspondence continued on infrequent occasions because of his ordeal in coping with
Marilyn's illness. One day in a Christmas letter, he told me that he had found a place in Costa
Rica where Marilyn would receive the best twenty-four hour, seven days a week care instead
of the 'stabilization through drug therapy' care she would be getting in the psychological
section of the geriatric department in a local hospital. It broke his heart to see his beautiful
wife vegetating as he could do nothing to reach her. She had stopped communicating with
him or anyone else, eating, sleeping at night or taking her medication on her 58th birthday
and seemed to be in a wordless trance.

As he flew to Costa Rica accompanied by their sons, her brother and a registered
nurse-caregiver, and Marilyn on her last trip - maybe forever, they thought to surround her to
keep her safe and calm. When she was placed in the nursing home in Costa Rica, she was
able to walk around a large interior patio, with assistance at first, but as the drugs were
reduced, she could walk unaided, and as she would come to some pictures on the walls, she
would call out the colors. "Blue! Yellow! Green!" They were astonished as she had not
spoken coherently for a long time.

Through the not yet three years since she began residence in Costa Rica, she has slipped
into oblivion.  In one letter, John describes her as restless, constantly sitting for a moment
then moving to some other place for a moment and on and on. In another letter, he
commented that Marilyn had lost weight and looked much as she did when they were first
married, and that he wished she could know that. She had fought her weight gain all of their
lives together; he thought she would be very pleased at how she looked. She has again
ceased speaking and no longer recognizes John although she smiles occasionally when he
comes into her room. He said one day looking at her, "I think Marilyn has a special
relationship with God going on. She looks so peaceful and happy.  I am jealous because I
wish I could visit with them and be as happy as she looks!"

I was deeply touched at his handling of her death - but not a death. He has lost Marilyn, but
she is still with him. John relies on memories of their lives together to be able to be with her.
Usually we think of bringing our memories out to keep from forgetting our lost loved ones, but
in the case of Alzheimer's disease, one is forced to let the memories of the still present loved
one keep them alive before they physically leave us. I can think of no harder task facing John
or any of us than trying to find comfort in the presence of such a tragedy! And with a real
death, as with a pseudo-death like Marilyn's, our only comfort must come from our Lord,
Jesus Christ, when He said, "Come unto me, all ye that labour and are heavy laden, and I will
give you rest".   Matthew 11:28.

John has taken those words to heart and is doing much more than just coping. He had the
resources, like many of us do not, to buy the nursing home where Marilyn is located and,
after firing an incompetent staff, found dedicated nurses and staff to provide Marilyn as well
as the other residents with quality care and attention. He desperately misses his Protestant
church in the States as Costa Rica is 95 percent Catholic. He attends a Unity church there
as it, unlike the Catholic Church, is open to other religions and spiritual beliefs. He is
studying Spanish to be able to communicate with the staff at the nursing home as well as the
local Costa Ricans to witness to them about Jesus Christ. John is teaching his staff basic
English as well. One of his dreams of building a top-flight Alzheimer's victim's refuge had to
be put on hold because of the difficult in supervising laborers in country. On his trips back to
his home in Nevada, John is fully involved with a weekly men's breakfast Bible study group
and another bi-weekly group, Bible Study Fellowship, that he and Marilyn attended as long
as she was able. He is networking with many, many other Alzheimer victim's families in a
support group, both by e-mail and in person.

His is a remarkable story of not just coping and grieving, but going boldly forward to make the
world a better place for victims of Alzheimer's and their families, and as well, is working to
push for a cure of the dreaded disease. John surely must have been touched by the hand of
God, for his boundless heart and love for Marilyn and all mankind.


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