I am so appreciative for your most endearing interest in our family this past year. You have made it possible for me to share with the world our emotional story of our family’s history of Early Onset Alzheimer’s Disease. Your support and encouragement during the making of the documentary helped me to get through a very emotional portion of my life.
Early Onset Alzheimer’s has been passed down in my husband, John’s, family recorded back to 1935 and most likely before that – a grandfather, father and two sisters – all passing before the age of 51. At 52 years old, John is now residing in a nursing home – with symptoms of confusion, beginning at age 44. This was also the same year our son Austin was born. His is now 8 years old and our only child. For the past years, I cared for John at home until the disease progressed to a point of impossible home care. Caring for John, raising a small child, and working was the most challenging life I could have ever imagined. On July 10, John and I will be married for 19 years. July 10 was the same day John was placed in the nursing home just returning from the hospital. Having John in a nursing home has been the most devastating experience for me, our son and his family. Going from a home care environment to minimal care in a nursing home has just taken my whole spirit. John is unable to walk, talk and feed himself. In looking for home care, there was no funding available because of his young age. The one thing John still has is emotion. I as his wife and caregiver want to keep that emotion and dignity as strong and alive as long as I can. John cared for me at the time of my mastectomy from breast cancer 11 years ago. I am going to care for him as long as he is with us. My daily prayers have been to hire a personal caregiver to come directly into the nursing home to personally care for John when I am not there.
Someone who will wipe his eyes from tears. Someone who will feed him properly and change his diaper regularly. Someone who will laugh and talk with him to keep his mind and spirit alive – someone who has a heart. Because the Early Onset Alzheimer’s is so rare, nursing homes are not familiar with this type of resident care – especially for a younger resident like John. It has been a struggle. Their intolerance to John’s aggression, rigidity and slowness to eat has been tearing at my heart. He so needs a caregiver who can relate to him as a friend, companion and personal caregiver. For the little time he has left with us I want to take our son to see his daddy and have daddy looking his best. Austin is still the main one who makes John laugh. We love him and miss him more than anyone could imagine. Our home will never be the same. I realize at this time there is no cure for this horrible disease.
Our family has lived through the deaths of John’s family members while under nursing home care. Their lives were obviously shortened.
I know God has a plan for us all. My God given plan was to take care of my husband and child. Unfortunately, this disease is not going to stop. My son and his cousins may follow. My goal for them is to start a path – a positive path my working with your foundation. Please keep us informed on any new research on the P.S.1 gene. Our family definitely will be there to help with any information for you that is needed in finding a cure for this early life robbing disease. These young children need to find security knowing there is a place to turn. Right now we are all going down this dark tunnel with no light at the end. Thank you so much Mary for all you are doing for us and others.
This project was supported, in part, by a grant, number 90AZ2791, from the Administration on Aging,
Department of Health and Human Services, Washington, D.C. 20201.
Grantees undertaking projects under government sponsorship are
encouraged to express freely their findings and conclusions. Points of
view or opinions do not, therefore, necessarily represent official Administration on Aging policy.
