My Journey supporting my partner through his Alzheimer’s Journey.
This is the first time I am writing publicly about this, but it is unlikely the last time I will do so.
Why? They say misery loves company but really, it is a lonely journey for all involved and having the comfort of someone who can empathize, not just sympathize really helps. There really is comfort in community. This is one way for me to create or build that community for my family.
How Our Alzheimer’s Caregiving Journey Began
My Alzheimer’s journey began unexpectedly, two years ago on my 67th birthday. My husband, or more factually, my partner of almost 30 years, had been experiencing frustration in writing. He was historically a great writer; never fast but really good. It was becoming harder and harder for him to finish even the simplest email. Two or more years earlier, he had an MRI and the neurologist told him he had a typical brain for a 65- year-old. Skeptical, he signed himself up for an Eli Lily clinical trial. He wanted the testing. The only time they could see us – and I was a required attendee – was on my birthday. Not my first choice but frankly, we expected it to be brief and to reaffirm the earlier finding – so I said OK.
Receiving the Alzheimer’s Diagnosis
As you may have guessed, things did not go as expected. They walked in and congratulated us. Yes, we were lucky to be admitted to the Stage 3 dosage trial for a drug which is now FDA approved. But we were not so lucky to have learned that my beloved had Alzheimer’s.
I think we were both in shock. How could this be happening? There was no history of Alzheimer’s in his family…
Within 30 minutes, they were drawing blood and doing a history and less than an hour later they started infusions. The good news: there were no placebos in this trial. He was getting the drug, and this was the second of the now two approved drugs to delay the progression of the disease.
Navigating Alzheimer’s and Cancer Together
The two years that have followed are a blur. We traveled to India and Sri Lanka, only losing a cell phone which, in retrospect, was a great outcome! It didn’t feel that way at the time and we spent far more time than we should have searching for it. About a month after we returned, I was diagnosed with Stage 4 cancer and spent the next two and a half months in treatment with the traditional cut, poison, and burn approach!
While tough on us all, I have survived the last two years plus, and have a very hopeful prognosis.
Early Alzheimer’s Progress and Lifestyle Management
For the first 18-20 months, my partner also did well. He managed the infusions with a couple of hiccups and started a lifestyle management program based on the research and findings of Dr. Bredesen.
While I might be wearing rose-colored glasses, I noticed little change in my partner’s cognition. He was still driving and while word finding was not as easy, he could carry on a good conversation, was able to do things around the house, and travel to see family. He started keeping a small notebook of reminders which seemed to work well.
Signs of Alzheimer’s Progression
In the last couple of months, I began to notice that I needed to prompt him more frequently with words he forgot. He was less inclined to go out to socialize and many routine tasks began to take longer.
After prompting his functional doctor for feedback, he hit a wall. His doctor affirmed a deterioration in his cognitive abilities based on a test he and his team administered. He reiterated his belief that his program could help, but that there were no guarantees.
The Shifting Role to an Alzheimer’s Care Partner
The anxiety in our home is now palpable. My job has shifted from partner and friendly reminders to coach, timekeeper, med administrator, cook and medical advocate, planner and scribe. I am asked to structure the time in the day, help decide on food, prompt words, and remind my loved one to breathe deeply and try to relax.
It is so much worse for him. I have learned how powerful hope is and when it dissipates, the result is not only hard but counterproductive to one’s long sought-after goals. Can you imagine being aware that you are losing your memory and with it, control over your independence?
Finding Hope in the Alzheimer’s Caregiving Journey
While the medical profession repeatedly tells us that there is no cure for this horrible disease, we are hopeful that we can treat it as a chronic condition, making the commitment to lifestyle changes that help delay onset of worsening conditions.
One of the great things about our industry is that others understand a whole host of aging related conditions. And many of us have long been committed to seeking new ways to provide purposeful living and assist and support individuals with chronic conditions including Alzheimer’s. I continue to have hope that we can have an impact; that we can nurture the spirit of life and give hope an honored seat at the table.
