I’ve Been Living With Alzheimer’s Disease for Nearly 10 Years—Here’s How My Life Has Changed
There are an estimated 5.8 million people in the U.S. living with Alzheimer's disease. It is the most common form of dementia, a general term for the gradual loss of memory and other cognitive functions serious enough to interfere with daily life. Alzheimer's prevention and treatment is a huge focus of health care, but it isn't often that someone living with the disease is given the opportunity to share their experience.
Here, in partnership with The Women’s Alzheimer’s Movement, which supports Alzheimer's research and education, and with the help of her daughter Emily, 66-year-old Cynthia Huling Hummel shares in her own words what living with Alzheimer's has been like for her in the years since being diagnosed at age 57.
I started having problems with my memory 17 years ago, when I was 49 years old. I worked as a pastor and was very busy studying for my doctorate and running a parish—and that was in addition to raising my teenage son and daughter. I definitely had a lot of irons in the fire. I started forgetting appointments, what I had preached the week before, and was unable to remember people in my congregation. As a pastor, it's true that I certainly do meet a lot of people, but I was starting to have trouble remembering people completely or recalling specific conversations that we had.
My instinct was to hide my memory problems as best I could. I started taking extensive notes to cover up my faulty memory. But it wasn't always easy to hide. Sometimes, someone would walk into my office for a meeting and I had no idea who they were or why they were there. Or someone would ask for prayer and I couldn't remember exactly what it was they were going through. It was really mortifying at times.
One moment that stands out to me in particular is when I was on my way to lead a graveside memorial service. I got in the car to drive to the cemetery and couldn't remember the way. It was so odd because the cemetery was a place I had driven by and been to many times before. What's worse, I couldn't even remember the name of the deceased. I started feeling panicked, knowing that there was a grieving family waiting for me to start the service. I ended up calling the local florist for directions and eventually made it, but the experience really shook me to my core. Ultimately, it prompted me to make an appointment with my doctor to find out what was going on.
Coming to terms with a diagnosis
Because I was so young, Alzheimer's wasn't one of the causes for my memory problems my doctor first considered. Could it be a head injury? Radiation exposure? He had all sorts of theories, none of which ultimately checked out. Even though Alzheimer's runs in my family—my mother had it—it wasn't considered at first.
Ultimately, it took eight years for me to get a diagnosis at age 57. After years of inconclusive theories and no answers, I was referred to a neuropsychologist who gave me a battery of cognitive function tests, which took several hours. They measured everything from my neuro-cognitive functioning to my processing speed. While I tested at 98 percent on verbal comprehension, scores for other areas were at the opposite end of the spectrum. It was a humbling experience. Even though the testing was difficult, it was crucial to my getting a diagnosis, which was "amnestic mild cognitive impairment due to Alzheimer’s disease."
When I got that news, I just started to cry. My doctor told me that this was something that was only going to get worse with time, and he suggested I step back from my full-time job. I felt such a deep sadness because I truly loved my job and I loved the people in my church. Because the church gives the residing pastor housing, this meant I would also need to find a new place to live. It was a lot to think about.
I don't remember how I told my son about my doctor's appointment, but my daughter, Emily, was studying abroad in Japan and the time difference made it hard to talk on the phone, so I emailed the news to her. What was most important to me was that I not be a burden to my kids. Between telling the kids, taking a step back from my job, and finding a new place to live, it was a lot to handle.
A renewed sense of purpose
Sitting in my new apartment, I started to think about what to do next. I decided that Alzheimer's was something I better learn more about, considering I had it. I started taking classes with The Alzheimer's Association, which were held at a local community center. I drove there for my first class and just sat in the parking lot and cried. It all felt like too much. But after a few minutes, I dried my eyes, got out of the car, and went to the class anyway.
In the early days of my diagnosis, I tried to focus on what my mom always told me: that when we help others, we help ourselves. With that in mind, I decided to start focusing on how I could deal with my diagnosis and use it in a way to help others. I contacted The Alzheimer's Association and The Women's Alzheimer's Movement (WAM) and asked them if there was anything I could do to help. As a minister, I had a lot of experience writing and speaking, so I used these gifts to help write a newsletter for The Alzheimer's Association and to start doing public speaking for The Women's Alzheimer's Movement. I also was appointed to the National Council on Alzheimer's Research, Care, and Services to represent the more than 5 million Americans living with dementia, serving as the only board member who actually had Alzheimer's.
I also decided to take some college courses, enrolling at Elmira College, which is close enough for me to walk to from where I live. I have always loved learning and now that I wasn't working, saw having more time as an opportunity to take classes for fun. (Because I'm retired, I receive a pension as as well as social security benefits, so my living expenses are covered.) Some of my classes have been in-person lectures, others have been on-line. I do as many of the assignments as I am able. It’s wonderful for me to be with the students and to be able to participate also in campus events such as concerts and art shows. My daughter Emily attended Elmira as well, so for a while we were actually on campus at the same time taking classes.
Being a student at EC has also given me the opportunity to speak to classes about living well with dementia. This helps break down stigma and other barriers. The dean was so kind to me when I told her about my diagnosis. Even though I wasn't old enough to qualify for a senior citizen's discount on classes, she said I could take all the classes I wanted. I've been taking classes at Elmira for nine years now; everything from children's literature to French and even ice-skating.
Something that I am no longer able to do now is read books. I used to love reading so much. But now, every time I pick up a novel, I can't remember what I read before. I donated 500 books to the church because I didn't need a reminder sitting around my home of something I couldn't do. There was still a lot I could do to focus on instead.
It's also been meaningful to me over the past nine years since my diagnosis to take part in clinical trials on Alzheimer's. The more scientists learn about the brain, the better. I enrolled in an observational study in 2010 called the Alzheimer’s Disease Neuro-Imaging Initiative (ADNI). This study is looking at the physical changes in the brain (and cerebral spinal fluid) over and against the cognitive changes I am experiencing. It’s a longitudinal study and it involves state-of-the-art MRI’s and PET Scans. I also opted-in for additional lumbar punctures and have signed a consent for a post-mortem study of my brain. I hope more people will take part in these types of studies, including people of various racial backgrounds because there is a need for more diverse representation in scientific studies. Other than participating in these studies, I am not pursuing any specific types of treatment.
Finding the silver linings—and the helpers
What I want people to know most about living with Alzheimer's is that your life does not end with a diagnosis; it just changes. My life changed in profound ways due to my illness, but I still find so much purpose in my life. After preaching the importance of faith during hard times for decades, I'm living it now.
My relationship with my kids has changed since my diagnosis. We talk about the future more. They know that after I die that I want my brain to be donated to science to be studied. We didn't really talk about those sorts of things before. And we spend time with each other enjoying the sheer joy of togetherness and whatever it is we are experiencing right in that moment. My son, his wife, and my two grandkids live in Amsterdam and we had an amazing trip there last year. And a few years ago, Emily and I had a wonderful trip to Toronto. It was actually a city we had been to together before and we went to some of the same places the second time around, but sometimes I didn't remember we had been there before. But that's okay. It was just as wonderful to experience them again.
If you have Alzheimer's, my advice is to look for helpers along the way. That's a lesson straight from Mister Rogers' Neighborhood. There are amazing organizations that can offer support and advice for you and your loved ones. And people in your life can be helpers, too. I no longer hide my diagnosis from others or try to cover up my memory problems. If I can't remember someone or something, I'm honest about it. My daughter Emily is an amazing help to me, being patient when I don't remember something, and just being loving and always there to listen.
Something else that's important to know is that no one experiences Alzheimer's the same; we're like snowflakes all with our own unique symptoms and traits. Trouble concentrating, taking longer to complete tasks that used to be easy for you, confusion with time or place, and trouble understanding visual images or spatial relationships are all signs, just a few of the most common ones. This is another reason why it's so important that the condition is studied.
I have always felt my life had purpose and know that it still does now; living with Alzheimer's has simply shifted that purpose and is allowing me to be used and help others in new ways. It's easy to focus on the losses with an Alzheimer's diagnosis—your memory, your job, your home—but I hope everyone living with this disease can focus on what they can do and how they can make a difference. There is still a lot of hope and life left for us yet.
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