Gretchen’s Battle with Alzheimer’s Disease as Told by Her Husband Mike Peppin

Peppin Family picture - taken in the summer of 2001

We met in 1995 at a bar/restaurant in northern MN and we were married on April, 19, 1996.  Along with being loving spouses, we were also each other’s best friend. Gretchen was an unbelievable wife and mother to all the kids in our blended family. She was the most amazing person I’ve ever met in so many different ways. She loved my 4 children as much as she loved her own daughter.  Her hobbies included reading, quilting, and entertaining friends and relatives. She always had a new book that she was reading in her spare time.  

We were happily married for nearly 20 years when I noticed subtle changes in Gretchen’s personality. She no longer had the usual vibrant personality that she was known for.  She quit reading which was always one her favorite activities. She also often had trouble putting her thoughts into words and not able to finish sentences.  I scheduled an appointment with her primary care doctor who put her through a series of tests including asking her to draw the face of a clock.  She wasn’t able to complete that task which was very concerning.  

Next, I scheduled an appointment with a neurologist at the Minneapolis Clinic of Neurology.  We went through additional neurological tests, a CAT scan, an MRI, and a spinal tap.  All tests were negative, and the preliminary diagnosis was Primary Progressive Aphasia caused by some form of dementia.  In order to come up with a more definitive diagnosis, the neurologist recommended a 6-8 hour neurological psychological exam.  I scheduled the exam, but the waiting time for an appointment was several months.

While waiting for the next appointment, I did some research on clinical trials that were underway and learned there were some treatments that showed promise of slowing the progression of Alzheimer’s disease.  I had also applied to get Gretchen admitted to the Mayo Clinic in Rochester.  Although my initial attempt to get an appointment for her at Mayo was denied, a close personal friend had a close working relationship with Dr. Ronald Peterson (one of the leading Alzheimer’s doctors in the country) and convinced him to take Gretchen as a patient.

In January 2016, we went for a week’s worth of testing, this time at the Mayo Clinic in Rochester through the Alzheimer’s Disease Research Center.  Gretchen underwent a neuropsychological exam, speech testing, a CAT scan, an MRI, and several different PET scans.  I learned the various PET scans are able to detect the Tau and Amyloid proteins that are the cause of Alzheimer’s disease.  Tragically, the testing revealed that Gretchen had early onset Alzheimer’s disease at age 55.  After he gave us the diagnosis, the first question that Dr. Peterson asked was if we had a long-term care insurance policy, which of course we didn’t.  I asked about getting Gretchen into a clinical trial.  Unfortunately, the doctor said she didn’t qualify due to her speech problems which had worsened.   

Of course we were both devastated by the diagnosis.  After a week of being depressed, we were sitting down one evening, and Gretchen turned toward me and said “that’s enough of being depressed.  From now on let’s move on with our lives and try to live normally as if nothing is wrong.”  From that moment on, Gretchen never complained or felt sorry for herself.  She was the bravest person I had ever met.

In the first 3-4 years after Gretchen’s diagnosis her symptoms progressed slowly, and we enjoyed a fairly normal routine.  However, concern about the future was an ever-present worry.  We were able to enjoy many fun weekends at our cabin in northern MN.  Gretchen loved to be on the lake in all seasons and really enjoyed being at the cabin.

After year 5, Gretchen’s symptoms started to progress much more rapidly.  I met with counselors at the Alzheimer’s Association to get advice on how I could provide the best possible care for her and inquire about any financial resources that might be available.  They were very helpful and provided a list of in-home caregiver service providers and suggested I meet with a county social worker regarding resources.  Unfortunately, the social worker said that if you have a good job and any retirement accounts, any necessary care is out of pocket. I knew I had to continue working to be able to pay for any care that might be needed in the future.  It soon became evident that for me to keep working I had to bring in a homecare attendant to be with Gretchen for a few hours during weekdays. I brought in 3 attendants using an outside service that didn’t work out. Luckily, a close personal friend knew a sweet young lady named Emma that had worked in memory care and was looking for an opportunity.  Emma turned out to be a super caregiver that both Gretchen and I really liked.

As Gretchen’s condition progressed, her behavior became much more agitated and erratic at times.  She would oftentimes make irrational demands of me that didn’t make sense.  At other times she would get aggressive with me or Emma. Gretchen was always a calm and gentle person in the most difficult of times, so this behavior was obviously caused by her terrible disease. Covid turned out to a blessing since I was forced to work from home and could help Emma calm Gretchen down when she had these panic attacks.  After nearly a year of having Emma for 6 hours during weekdays, the frequency of these episodes increased, and the job became too stressful for her.  It was at that time we decided it was time to move Gretchen into a memory care unit.  On August 27, 2020 we moved her into Parks Place Memory Care in Plymouth.  That was the hardest decision I have ever made, and I still feel guilty about doing it.  Gretchen’s primary care doctor, Dr. Jennifer Purifoy, showed a lot of concern for my situation and assured me it was the right time to make the move.

After 4 months of being in memory care, the agitated episodes increased, and the nursing director told me I had to bring Gretchen to the ER.  After doing some research we found that Unity Hospital in Fridley had a geriatric unit that handles such cases. I had to stay with Gretchen in the ER for 2 days until a bed opened-up for her.  The goal was to find the right medications that would calm her down and make her more comfortable.  Although the unit was locked down due to Covid, I was able to contact staff regularly to find out about Gretchen’s condition.

Gretchen was in the geriatric unit for a week and a half when the staff arranged a conference call with me. They told me Gretchen’s body was shutting down, and it was time to put her in hospice care with the goal of keeping her comfortable.  Seeing her suffer up to that time was unbearable. Shortly after that time Gretchen was not able to walk and almost in a vegetative state.  Hospice staff was a blessing for me knowing they were doing everything they could to keep her comfortable.  On February 28, 2021 at 6:00 pm Gretchen passed away at age 61.  Throughout this difficult journey, Gretchen faced this terrible disease with unbelievable bravery.  I consider myself a religious person, and one thing I know for sure is that Gretchen is in heaven. I will love her forever.

After being Gretchen’s primary caregiver for those 6 ½ years, one thing I learned was that being a caregiver for the love of your life is the most demanding and stressful job in the world. Alzheimer’s is just a terrible disease. The stress and sadness of watching your loved one deteriorate never lets up. And the grief you feel after they’re gone is chronic and will never go away.  Since Gretchen passed away, friends, relatives and I have participated in the Walk to End Alzheimer’s annually in Gretchen’s memory, and plan to continue doing it every year.

Understanding More About Alzheimer’s Disease

Alzheimer’s is a devastating disease. After reading heartbreaking stories like Gretchen’s many many begin to worry about their risk of developing it. Your doctor is always your best resource if you have any concerns. However, a good place to start learning more is in our article, “Am I at Risk of Alzheimer’s Disease?”