| I am reaching ... but I can't reach you. The grief of Alzheimer's Disease. © 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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