Jim was 47 years old when we started recognizing something was changing and started searching for a diagnosis, which took over two years. He had been retired from the Air Force, as a Senior Master Sergeant, for five years. He passed away in June 2016 at the age of 52. Our children are now 14 and 17 and also helped care for him while he was still home. Unfortunately, he had a violent episode and we were unable to keep him in our home, so he spent the last eight months of his life in a memory care facility. His mom and brother also both had Alzheimer’s disease, and Jim tested positive for Presenilin 1 mutation that causes Younger Onset Alzheimer’s Disease in 100% of those who carry the gene.
Because Jim was diagnosed after he retired and it was concluded his condition was not military related, he did not qualify for long-term care assistance or companion care in our home. He was still able to receive his medical benefits through TriCare and eventually Medicare after he had been disabled for two years. But his medical insurance did not cover the assistance we needed to keep him safe and cared for. We also earned too much for assistance through the Veterans Administration, which tends to have stricter guidelines than Medicaid.
Jim and so many who served before and with him always believed that in a case of medical need, he would be helped and cared for. It was always thought that if you did your time in the service, then when you got older and needed some sort of assistance, you would be taken care of. There were many times Jim would look at me so confused and ask why I didn’t just take him to the VA because they would take care of him and he would be okay there. It would hurt him that he wasn’t able to have this assistance he was promised when he joined the service in 1982.
Oftentimes it is confusing to distinguish between medical needs and what is considered companion care. Jim had no other medical needs, no diabetes, no heart issues. And we were told over and over that if he just had some other medical need, we could get help with in home nursing care. But because he was otherwise healthy, and just needed assistance with daily activities, we did not qualify for help.
We were left to our own devices for nonmedical help and assisted living. We must work toward not only a cure but making sure those who have served and protected us are protected themselves.
Karen Garner is a passionate Alzheimer's advocate. She is mom to Frances, age 17, and Bradley, age 14. She chronicled her family's story in the blog, "Missing Jim: Confessions of an Alzheimer's Wife." Karen now supports fellow caregivers through Advocacy and The Garner Foundation.