Dear Richard,
Thank you for your beautifully written article and your willingness to share your deepest and private thoughts with the world. I will look forward to reading your articles and will read them to my husband, who was diagnosed with Alzheimer's disease five years ago also. I am his primary care partner.
Concerning your thoughts on hope, my husband and I have a somewhat different perspective on hope. We do not spend time hoping that he will get better or that he can recapture "yesterday" today. We have replaced that hope with gratitude. We are grateful that we have had 42 years of wonderful married life, that we have two good and healthy sons, and two beautiful grandchildren to enjoy (no, my husband cannot take our grandchildren fishing, but he can go with us to the park and watch them play). We are grateful that we have experienced so many opportunities at rewarding careers, wonderful times traveling and great friendships.
When Paul and I received his diagnosis, we determined that we would stay focused and grateful for what he could do and not what he could no longer do. Even though he has lost so many of his motor skills, he still has great verbal skills, as do you. We both get discouraged at times and wish that this Alzheimer's disease had not attacked my husband. I sometimes allow myself to worry about the future, how I will care for him and how I will pay for his care. He worries at times for me and what the impact of the disease is having on me. But when we begin to worry, we turn back to gratitude to the Lord and how He has sustained us all these many years and our hope wells up that He will sustain is to the end of life on this earth.
Even though I watch my husband go through this disease day to day I can still not fully appreciate what all he is dealing with. Thank you for so eloquently expressing your thoughts to help us better understand .
Carole Bolt
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I am a caregiver for my 42 year-old husband with Early Onset Alzheimer's. He is blissfully unaware of the disease, at least at the times we have tried to explain it. "My hope is built on nothing less than Jesus blood and righteousness, I dare not trust the sweetest frame, but wholly lean on Jesus name" is the first stanza of a song called "On Christ the Solid Rock I Stand." He likes this song a lot. Though he often can not recall family members or friends (he usually calls me "beautiful girl" or "wonderful girl" - and I can accept that). In the beginning it annoyed me, but now especially after reflecting on your essay, it gives me hope to know that there is something beyond this life of care. I also continue to appreciate walking with him, holding hands and accepting his compliments.
Angela Howard
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In response to Richard Taylor, he mustn't lose hope. Loss of hope, by definition, is equivalent to despair. Hope is what keeps us going. Doesn't he or his caregivers know that there are over 50 drug companies and an enormous number of government sponsored researchers all over the world studying the mechanism of Alzheimer's, gaining new insights every day, and developing medications that have a high probability of stopping and even reversing the disease, possibly very soon? Millions of dollars are being spent on this by the drug companies. Would they be doing this without a strong likelihood of success?
Hope should induce us to stay abreast of these developments and to get involved in the clinical trials that are an essential part of new drug development. The Aladdin Clinical Test Program is testing the drug Lupron at sites all over the country. It has shown very promising results.
Michael Reagan, son of our former president, is on the radio daily asking for participants. There are many other test programs which show promise. They can be found on the Internet, on Google, under Alzheimer's Clinical Trials.
My wife has had Alzheimer's since 1998. We have been in three trial programs, two of which brought us positive personal results. There is hope, a light at the end of the tunnel. Get involved. Turn your personal tragedy into something positive. You may benefit more than you can imagine.
Norm Serra
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Richard:
I think humans always hope for "the governor's reprieve," the last second snatch from certain disaster, and maybe a timely miracle until we take our last breath. Since we are human, we seem to be constructed to hope. However, I totally agree with your conclusion. Life "time" must not be squandered on the past or the future. Life must be lived in the present moment. And once again, we are confronted with a terribly human problem. Living in the moment is no easy business, whether one has dementia or not. Thank you for sharing your feelings. You are a window into the patient's side of dementia. I already look forward to next month's column.
Sheila Krichman
Caregiver to my husband (Alzheimer's), mother (vascular dementia), and my father (cancer)
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I would like to respond to Richard's post as I am also a victim of Early Onset Alzheimer's Disease. However, I really don't see myself as a victim, but rather a survivor. I was diagnosed in 2002 and after the initial depression and fear wore off, I realized that I had a mission to help others that were struggling just as myself. In regards to Richard's question I try to focus on what I can do to speak out not only to help others that are newly diagnosed, but to bring more public awareness still with the hopes to remove the stigma of the disease. Richard is a member of my online support group Dementia Rescue and I see him as an inspiration to so many of us not to abandon hope.......THANK YOU RICHARD!
Tracy Mobley
Author of Young Hope & I Remember When
Creator of The Dementia Memory Quilt
