By Mark Holly
My dear wife Tina and I met when we were in the third grade. We dated a little while attending the University of Washington in Seattle. Although our relationship ended after my graduation and prior to me joining the military at the height of the Vietnam War, we reconnected 10 years later and were together for the next 40 years.
I am an Alzheimer’s Advocate because Tina’s dementia journey might have been different if “I knew then, what I know now” about Alzheimer’s. Unfortunately, my initial lack of knowledge regarding Alzheimer’s and the failure of Tina’s medical practitioners to alert me of Tina’s dementia issues led to a significant amount of unnecessary turmoil and emotional pain. Ultimately, I needed to place Tina in a memory care community during the last two years of her life. Tina had struggled with her health for many years until passing away at the age of 74 in October of 2019. Her certificate of death states that her cause of death was due to “Alzheimer’s type dementia of earlier onset with behavioral disturbance” over an “interval of 12 years.” That’s the short story. Now, let me fill in some of the blanks.
Tina and I used to frequently visit her mother in a memory care community. Her mother did not begin to display any Alzheimer’s behavior until she was in her mid-80’s. She passed away at the age of 90. Tina’s maternal grandmother lived into her 96th year without any Alzheimer’s symptoms. Her father passed away at the age of 88 without any display of Alzheimer’s. So, neither Tina nor I ever gave much thought that she would be a candidate for Alzheimer’s.
Tina had a successful design business for a number of years until she retired in 2000. She created country French pine furniture, bent willow furniture, children’s furniture and dried floral arrangements. She was skilled in interior design and landscape planning. I was very fortunate to be able to retire from my accounting and finance work in 2002. My early retirement allowed me to be Tina’s sole caregiver during her many medical issues and her looming dementia journey.
Tina’s medical situation was complex. She had significant gastrointestinal problems beginning in 2008. These issues required her first G-J tube to be placed in 2011. This was a feeding tube that entered via the abdominal area into her stomach then out into her small intestine in order to receive sustenance 24 hours each day via a pump. Tina needed to have this process 3 times over a period of 5 years. She was a real trooper during these times requiring a G-J tube. She would place her feeding pump in a travel bag and continue with life the best she could. This included activities that we always enjoyed together: working in the yard, visits to the grocery store, medical appointments, washing/drying her hair and going out in the RV for a day trip or an overnight stay.
When Tina began to show some signs of cognitive decline, none of her original doctors conveyed any concern to me about the possibility of Alzheimer’s. They would make comments like “Mark, you may want to do something for Tina. You know, she will not get any better.” Or, “Mark, it’s a real shame about Tina.” I received no direction to resources or organizations that may have been a support to both Tina and myself. So, since the doctors never mentioned the word Alzheimer’s back in 2014, it was easy for Tina and I to remain in denial that it really existed. It was only later that I learned Tina’s uncharacteristic behaviors actually foretold her coming dementia journey.
It eventually got to a point where we could no longer ignore Tina’s unexpected behaviors. She displayed total confusion in the spring of 2015 when she ripped out all her prized perennials from the garden before they bloomed, got lost on an RV trip that we had been on many times before, had the same conversation with a neighbor that she had just the day before, woke up in the middle of the night not knowing who or where she was and never showed any interest in reviewing the results of a doctor’s appointment, hospital stay or the medication descriptions she was provided.
Finally, in 2016 we were referred to a psychiatrist to evaluate Tina’s cognitive condition. She was given the basic test for memory and dementia. She failed. The doctor prescribed some common medication for memory loss and anxiety. Tina loved to joke around. So, whenever she would take her memory medication, she would look up at me and say “Who are you?” Fortunately, she always knew who I was, right to the end of her dementia journey.
Tina’s cognition continued to decline as we moved through 2016 and into 2017. It was getting impossible for me to effectively manage Tina’s behavior during the day or night. This included her frequent unnecessary 911 calls in the middle of the night that brought out the fire department, ambulance and sheriff’s deputy to investigate. This also involved numerous unnecessary visits to the ER in the middle of the night. Finally, whenever I would not take her to the ER or call 911 for her, she would head out of our house in the middle of the night to knock on the door of one of our neighbor’s and ask them to call 911 for her.
We were in crisis mode. Fortunately, I was able to arrange for an emergency admission to a memory care community for Tina in late 2017. The doctor supporting the residents of the community was extremely knowledgeable regarding the treatment of patients with Alzheimer’s and other dementia. He utilized the Global Deterioration Scale, a screening tool that helps determine the status of a person’s dementia in seven stages. In his assessment, Tina had progressed to a Level 5 or or moderately severe cognitive decline (Moderate Dementia). Tina’s original doctors commented, “We were all surprised that you waited as long as you did before moving Tina into memory care,” even though none of them had ever mentioned Alzheimer’s to me during her appointments.
My education regarding Alzheimer’s and other dementia really began during the two years that Tina was a resident in the memory care community. The community management and Tina’s resident doctor directed me to outstanding resources that increased my working knowledge of this terrible disease. The Alzheimer’s Association became my go-to source of information and direction. The Association led me to a wealth of reading material on their website, in addition to two local Alzheimer’s support groups and the local Area Agency on Aging support group. I only wish that I had been directed to these resources earlier in Tina’s dementia journey.
Tina was diagnosed with Frontotemporal Dementia (FTD) in 2018. Her overall health and mobility began to deteriorate as we moved into 2019. She ultimately became wheelchair bound and lost considerable interest in eating. The caregiving staff at the community kept busy making sure she was in clean clothes and that she received all her medications on time. Tina still loved my frequent visits, in spite of her condition! We would always reminisce about meeting each other in the third grade as well as recall years of favorite memories, watch the birds eating outside, listen to her favorite music and always celebrate with some ice cream. Hospice was enlisted to support Tina’s transition during the month before she passed. She loved the support received by hospice personnel and all the staff and the doctor at the community that she called “home.” My dear wife Tina knew exactly who I was, right up to the moment of her passing in October 2019.
I have been attending a local hospice support group meeting twice each month since Tina’s death. These sessions include others who are also moving through the grieving process. Our open discussions allow each group member to share their current feelings and learn from each other’s experience. These meetings have also allowed me to begin to effectively fill the void left by Tina’s passing with positive and constructive thoughts and activities.
My purpose for being an advocate for Alzheimer’s and other dementias has three objectives:
1. Ensure our federal and state legislators increase funding to support research focused on finding a cure for Alzheimer’s and other dementia.
2. Distribute Alzheimer’s and other dementia information to primary care physicians so they become more comfortable providing this material to their patients when appropriate.
3. Provide Alzheimer’s and other dementia information and personal experience to family and friends that seek knowledge on this subject.
Please join us for the Alzheimer’s Association Washington State Advocacy Day as we press legislators to fund better care and support and other priority recommendations in the Alzheimer’s State Plan. All meetings to be held online or by phone using the Zoom platform. Learn more at alzwa.org/advocacyday