By Cheri Whitlock
On January 9, 1988, my husband Jim and I spoke traditional vows of better or worse, richer or poorer, sickness and health, till death do us part. In our 30 years, we have shared all the normal ups and downs of married life. We moved across the country and bought a home, we had a miscarriage and dealt with infertility, we shared our delight in photography, we lost parents and friends, went through 32 major surgeries between us, we laughed and discovered the beauty of our nation during three cross-country road trips − supporting and loving one another through all the issues of life that came our way.
In 2002, we began the first battle with Alzheimer’s with my mother-in-law who was 71 years old. By the time we realized what was wrong, she needed long-term care. Four years later, she passed away. My husband and I supported and loved each other through her illness and our loss. She was fairly young in terms of onset, as her symptoms began much earlier, around the time she was 67. We just didn’t know what it was at the time.
Five years ago, when he was only 62, my husband began exhibiting the same symptoms. In those five years, I have lost so much of the man who has always been my rock and my advocate, my biggest cheerleader and fan, my lover and my friend.
Jim had a photographer’s eye and ability. He had a deep passion for books and could read complex science fiction at an astonishing rate, with the ability to explain the books to anyone in terms they could understand. Christmas of 1954 began Jim’s love affair with Lionel trains and live steam trains. He had a photographic memory, and the ability to analyze any situation with lightning speed, producing a solution to any problem within moments. He was highly intelligent, capable and able.
Now, Jim has lost the ability to use his camera. His trains only run when I take him into the room and run them for him. He doesn’t remember that he read the same chapter of the same book yesterday and the day before, and his photographic memory is completely gone. He cannot analyze any of life’s problems now, but instead relies on me to manage everything. His physical abilities are less and less with the passing of time. He requires verbal cues just to brush his teeth and full assistance in bathing.
Jim fought me on getting a diagnosis because he had seen his mother’s battle firsthand. At the time of her illness, he told me that it was his worst nightmare to ever consider having Alzheimer’s. After two years of symptoms, I finally convinced him to go to the doctor. I will never forget the stab in my heart at the anguished look on his face when he first heard the diagnosis of dementia, most likely Alzheimer’s. Watching my beloved husband die by inches, with daily losses in abilities, is the deepest heartache ever.
When we finally got an official diagnosis, the despair and loneliness were overwhelming. I work full time and all of his care falls to me. We don’t have children and our siblings are in other states and unable to help.
With the amount of care Jim needs now, even with a paid caregiver coming in three afternoons a week to help while I’m at work, I have a level of exhaustion you cannot imagine. There are no breaks unless someone from our church family or a friend offers to hang out with Jim to allow me a little social interaction. Generally, I use those offers while I am at work in order to avoid having to pay for another day of professional caregiving. I’ve only had one overnight respite in the last few years, and that also is due to a friend being willing to stay overnight with Jim. Without regular respite, my own health is changing, and not for the better.
This disease affects almost every family. Did your grandparent, your aunt or uncle have it? Maybe your parents? Or their best friends? Have you watched someone you love battle this disease without even the barest chance of winning? Alzheimer’s attacks across all lines of race, gender, color and nationality.
When long-term care insurance became available, we had a choice: pay our basic needs for food and shelter or pay for long-term care insurance. We opted to pay for our basic needs. Now, we face the loss of our entire retirement fund to pay for Jim’s care. We fall into the category wherein we have too many assets to qualify for Medicaid; and trust me, we do not have large assets after paying our portion of the cost for 32 major surgeries in the last 30 years. After Alzheimer’s takes its ultimate toll and Jim passes on, this will leave me with nothing to financially fall back on when I am finally of an age to retire, effectively ensuring that I will have to work until I die or require full-time care myself.
I originally wrote the speech above in February 2018, when I had the opportunity to be a part of the Alzheimer’s Association Advocacy Day in Olympia. A lot has changed in the last year…
From February to May of 2018, my precious Jim experienced a terrible decline. His decline was such a big one, that on May 29, due to my own health changes, I had to place him in long term memory care. It was the most difficult decision of my life, and his. He declined further, and sadly, Alzheimer’s claimed another person. While holding my hand, Jim passed away on July 6, 2018. I grieve the loss of the amazing man he was and the love we shared.
Please, for folks like me, pass the Long Term Care Trust Act and fund the implementation of the Washington State Plan to Address Alzheimer’s Disease and other dementia. It is too late to help my husband, but it will help countless others. Thank you for your time today.
Do you want to share your Alzheimer’s advocacy story? On Feb. 19, join Alzheimer’s advocates in Olympia as we press state legislators to fund better care and support and other priority recommendations in the Alzheimer’s State Plan. Registrants receive issue training and lunch before their teams visit Senators and Representatives in the afternoon.
For questions about Advocacy Day, contact Peter Newbould: firstname.lastname@example.org or 206.529.3867.