"During our many years together we have said countless goodbyes to one another. Every working day we would wish each other a good day, followed with a kiss, before we each went our separate way. Over time, you had many business trips, some were overnight and others as long as two weeks in length, but, as we said goodbye, we knew we parted in love, secure in the knowledge that we would always be reunited after a short time apart. Our love for one another sustained us and we knew those goodbyes were temporary. We would see one another again and be one in mind and heart.
Now, however, you are taking a very long journey, one where I cannot accompany you. You are taking a trip accompanied by the disease of Alzheimer's. Neither of us know how long this trip will last or the exact time frame we are working within."
This excerpt, and those that follow, are taken from an article written by Nancy Hartley in 2017. They give us a brief glimpse into the heartbreaking and grueling 'journey' Nancy is on with her beloved husband of over 40 years, Bill.
"Technically, this trip began in the fall of 2008, when after extensive testing by two neurologists, they both agreed you were suffering from Alzheimer's. It broke my heart to know that from that time forward you would begin your long, slow goodbye, not only to me, but to family members and friends until you no longer recognized any of us. Our times of conversations, shared memories and experiences have become fewer as you continue to lose more of your brain cells that once helped you retain experiences and memories of our years together. I miss your quick wit, your rapid uptake, your sense of humor and fairness, and your understanding of issues. I truly miss your hugs that you made sure to give each day. I miss our 'remember when' conversations. I find it sad when you forget our anniversary, my birthday, Valentines Day, Christmas and Easter. I watch you fade, like something washed too frequently, faded in color, still intact in some ways but losing something in weight and substance. I feel frightened at times by the speed with which this disease moves. I wonder how long it will be before you no longer recognize me at all or know your children."
According to Merriam-Webster Dictionary, the definition of Alzheimer's disease is: "a degenerative brain disease of unknown cause that is the most common form of dementia, that usually starts in late middle age or in old age, that results in progressive memory loss, impaired thinking, disorientation, and changes in personality and mood, and that is marked historically by the degeneration of brain neurons."
The loved ones who are usually the caregivers of those affected bear the brunt of the ugly side affects of this atrocious disease. It's a slow and painful journey, filled with frustration, uncertainty, and a deep, deep sadness. It steals your joy at every turn as you grieve the loss of your living loved one.
"My heart aches when I recall the day at the car wash when I asked you if you wanted me to help you wash the car and you replied, 'no.' However, in a few minutes, you came over to the car and told me you had forgotten how to put the coins in to start the process. I looked at you and said, 'That must be very scary and sad for you.' 'Yes,' you answered and my heart ached for you. I cannot fully understand your feelings, your frustration or how lonely you must feel at times, but if you never recall anything else, I hope you will always know, deep in your heart, how much I love you, how precious our time together has been and how fortunate I am to have had you in my life. I want to reach out and grab you, to hold on with all my strength and not let go of you. Inwardly, I rage at this illness which is slowly taking you away. With every incident which happens, I see another small part of you go, one more thing you will never recall again.
This is a long goodbye that has no discernible end. I dread the day when I will say my final goodbye to you. You have been my love, my support, my best friend, the one I have loved for so long, and still love. Because of you, great joy has been in my life, so many treasured memories which we no longer share.
I wish I could say, 'Don't go.' I want to scream, 'Don't Go!,' but in this I am powerless, ineffective and alone. Goodbye originally meant, 'God go with you,' and so I am left saying, 'God go with you, my Love'."
- Nancy Hartley
For Nancy, and many others who are traveling down this long and excruciating road, there is help. A support group for the loved ones and caregivers of Alzheimer's and Dementia patients is available here in the county. Held every 3rd Tuesday at 6:30 pm, in the Perry Moore House at First United Methodist Church in Rutherfordton, this free group offers some relief and help for caregivers. The Rutherford County Alzheimer's Support Group is facilitated by Amy Hamilton who has a graduate degree in Gerontology from Appalachian State University. Amy can provide resources and insights that will make it just a little easier. Nancy has been going since she first learned of Bill's diagnosis, and recommends it to everyone.
If you, or someone you know, is a caregiver for an Alzheimer's or Dementia patient, and are trying to do it alone, please contact Amy at 828-305-2278. The first thing a caregiver needs to do is take care of themselves. For more information on the Rutherford County Alzheimer's Support Group, please turn to page 2.