Updated: Jul 22, 2021
Bert Brown’s experience as a physician and caregiver for mom with early onset Alzheimer’s.
Mom’s Alzheimer’s Odyssey
GeriScope is hopefully a road map for all of us with relatives who may need help navigating life as they age. My personal experience was with my mother. She suffered from multi infarct dementia and passed away, tragically, in 2008. Mom and I were very close, but it was her friends who first noticed something was not quite right. One of my mom’s friends back home in New Jersey called me midway through my first year away at medical school to tell me there was something very wrong. I knew my mother was occasionally forgetful but nothing seemed abnormal. She was only 60 which was very young to truly have dementia or Alzheimer’s.
Next my family began to notice mom would often forget that she just told us something and repeat it. Soon this became a common occurrence. We were concerned but she had a very busy life serving on multiple community boards and working with a professional choral group. It was something we found easy to ignore.
With time, my mother became more and more forgetful and even she began to notice it. Mom told everyone she had early stage Alzheimer’s but it was actually multi infarct dementia which is caused by scores of small strokes over time. Most Alzheimer’s patients aren’t really aware of their condition but my mom was fully aware of her memory lapses and occasional bouts of confusion.
While we became more and more concerned, she coped. My mother drastically reduced how far and when she would drive; and she kept in close contact with her friends. Though my parents were divorced, my father checked on her regularly and my older brother that lived fewer than five miles away stopped by more often. Everyone knew what was going on and provided a solid support network for her. We became fully engaged with her primary care provider so we could coordinate her care and follow her progress. Over the next few years, mom did well and no real intervention or advanced care was needed. Comfortable with the support network, I graduated from medical school, got married, and moved to Texas.
The First Crisis
Nearly 10 years after she showed the first few symptoms, my brother passed away unexpectedly. This intensified her bouts of forgetfulness and confusion. I returned home to New Jersey and conferred with her physicians and a couple of world class neurologists. What do I do now that my brother wasn’t here to check on her every day? Could we really expect her be able to take care of herself after the shock of my brother’s death faded into the background. My first thought was to move her to Texas with me so I could see her every day and know everything was fine. Doctors counseled me that her condition would likely worsen much faster if she were in an environment that wasn’t familiar to her like her own home. Hence, I went back to Texas without her and planned to hire a caregiver to help her out a few days a week. As she seemed to continue to cope with support from her friends, I put it off. Two months after my brother’s death, she had a stroke. One of her best friends called her that morning and she just mumbled into the phone. This friend is exceptionally smart and concluded she may have had a stroke so she called for an ambulance.
In the emergency room she was unable to speak (aphasic) and lost use of her right arm. She knew what had happened but couldn’t get the words out. This was very frustrating for her.
Return to Comfort of Home
After a week in the hospital and another four weeks in rehab, mom returned home with a live in aid. Once again more than one very good neurologist told me she would do best in her own home as long as possible so that’s what we did.
Well before her stroke, we had spoken at length about what she wanted if she got to this point in her life. I was in control of her bank accounts and able to pay her bills from Texas. My dad checked in on her and her caregiver several times a week which made all the difference in the world for me. I trusted him and knew he’d look out for her. This gave her the opportunity to remain in the most comfortable and familiar environment possible.
Social Worker to The Rescue
I had lots of experience helping patients and their families plan for their recovery but I was lucky to have an amazing social worker help me navigate. She facilitated the selection of the home care company and everything I would need to keep my mother safe. A big surprise was my mother’s long term care insurance would pay for her in home health care but only after the caregiver is in the home for 90 days. That meant WE would have to pay for the care at $2,200 per week. If we did not have the assets to pay for the first 90 days, the insurance would not cover anything. I knew this was the case when I reviewed her policy years before but it never seemed real. I doubted that we’d ever really need the insurance but I was so very wrong. Thankfully, the social worker had some ideas for me as this was a common obstacle for many families. We ended up taking out a home equity loan on my mother’s home. We were lucky.
My mother lived in her New Jersey home for a little over two years before her death. She was able to speak a few words after weeks of speech therapy and was incredibly expressive and present for the first year. I flew home to NJ every two to three weeks. It was always stressful and emotional when I saw her. Mom always smiled and let me know she was happy to see me. After the first year, my mom slowly faded away. It was heartbreaking to watch. The stroke accelerated her dementia. She still found a way to smile and she still seemed to enjoy her family and friends when they came to visit. This was the hardest part because though I knew I was doing the best I could for her, I couldn’t stop the progression of her disease. My doctor’s degree couldn’t change things.
Her death was unexpected. I had decided to move her to Texas with me as she would no longer benefit from the familiarity of being in her own home. After visiting many memory care nursing homes, I chose one close that used doctors from the hospital where I practiced. As I started making plans for the move, my dad called and informed me the caregiver had “lost your mother.”
While the caregiver and her daughter were putting away groceries just ordered for them, my mother quickly walked out of the front door to her freedom. Mom walked deep into our suburban neighborhood and quickly got disoriented. I know this because she approached a man in front of his house and told him her name. She walked off behind a beautiful old church and got entangled in some thick brush far out of sight of the street or anyone passing by. It was a cool but drizzly evening and it doesn’t take much for a 70 year old with no jacket to become hypothermic. She sat down behind the church and went to sleep forever.
I caught the first flight to New Jersey and helped the local and county police search for my missing mother. Multiple local television stations interviewed me and I participated in a news conference to rally people to help in the search. After two days, the police did a reverse 911 call to our neighborhood asking if anyone had seen her. The man she approached in front of his house called and the immediate area was searched. She was found. It was heartbreaking mostly because my mom still had life in her and she was my responsibility.
The Next Crisis
Taking care of our loved ones can be extremely difficult in so many ways. For many years my father has been an active, healthy, happy traveler that is very involved in the community. But I can see things are beginning to change starting with a recent unexpected trip to the emergency room. We hope to use GeriScope as a way to share our lessons learned, provide you with helpful resources, and give you a roadmap to make this part of the journey just a little less stressful, more manageable, and comforting.