This is my second post describing the journey with my wife Cheryl. In a period of 42 months, this insidious disease progressed from mild stage early onset AlzheimerΓÇÖs to the severe, profound stage she is experiencing today.
It started in the summer of 2007.┬á Cheryl and I were in Toronto visiting a group of friends we met while living in Germany.┬á These reunions take place every couple of years so they had not seen Cheryl in some time.┬á As the reunion concluded, both other couples pulled me aside to talk.┬á They were concerned about CherylΓÇÖs behavior.┬á She was having trouble following conversations and finding words while speaking.┬á They asked me if Cheryl was having some sort of series of mini strokes. ┬áI┬áhadn’t┬áreally noticed the subtle changes in her behavior since I was with her most of the time.┬á Was it possible I┬ádidn’t┬áwant to notice these changes? Cheryl was only 56.
Our day-to-day routine seemed to be fairly normal except for CherylΓÇÖs struggling for proper wording or leaving cabinet doors open.┬á I knew there was something wrong but I was just not prepared to address it. ┬áAs I reflect on it now, I had noticed changes but because of my denial, I┬ádidn’t┬ádo anything about it.┬á The lesson learned: do not put off seeking medical help for something that you do not yet understand.
A couple of major events that caught my attention occurred in the spring and summer of 2008.┬á I was leaving on a long trip out of the country, so I asked CherylΓÇÖs mother to come and stay with her during my absence. ┬áCheryl picked her mother up at the airport, a route she had driven many times before. ┬áOn her way home, Cheryl got lost.
In June, we were taking a family vacation in the┬áBaltic’s┬á We arrived in Stockholm, Sweden where we stayed prior to embarking on a cruise.┬á I noticed Cheryl wandering the halls of the hotel in a sort of a daze.┬á It was highly disturbing.┬á I asked here if she knew where she was.┬á Her reply, ΓÇ£I donΓÇÖt know.ΓÇ¥
When we returned from the trip, I knew I needed to do something, but I still was in denial.┬á Shortly after our return I was having lunch with my son Drew.┬á When the subject of CherylΓÇÖs actions came up I mentioned, ΓÇ£I realize I need to get some professional help to find the cause behind CherylΓÇÖs behaviorΓÇ¥.┬á DrewΓÇÖs response was, ΓÇ£What do I need to do to make sure that happens?ΓÇ¥┬á His comment irritated me because I knew I had put it off far too long.┬á I knew he was right.
The next day, I scheduled an appointment with a neurologist. Neurologists are a little scary because they deal with the brain.┬á You know what to expect when you go to a cardiologist or an internist but with a neurologist you have no clue what is going to happen. ┬áHe did the normal memory related exam and scheduled a battery of tests, including an EEG, CAT Scan and neuropsychological exam.┬á The neurologist told us Cheryl was experiencing symptoms of aphasia (inability to speak) but he did not know what the cause was.┬á He suggested for us to get a second opinion. ThatΓÇÖs when I decided to take Cheryl to the Baylor College of Medicine.┬á They scheduled additional tests including a PET Scan (the test used to diagnose AlzheimerΓÇÖs).┬á Because of BaylorΓÇÖs heavy schedule with their other patients, they did not get back to us with a diagnosis until February 2009.┬á The doctor walked into the exam room and calmly announced that the test results had been reviewed.┬á Cheryl had AlzheimerΓÇÖs disease at the age of 57.
I was in disbelief. I had heard of AlzheimerΓÇÖs but really┬ádidn’t┬áknow what that meant for us. I donΓÇÖt believe Cheryl totally comprehended the diagnosis either.┬á It was only when the doctor told her she should stop driving that she began to cry. ┬áA psychologist then came in to explain what we could expect and to tell us what resources were available.┬á By that time I┬áwasn’t┬áreally hearing anything the doctor said.┬á We left the office knowing our lives would change but not knowing what the future would look like or how to deal with the unknown.
I Googled ΓÇ£AlzheimerΓÇÖs diseaseΓÇ¥ when we got home from the doctorΓÇÖs office.┬á There was so much information available it was overwhelming; and yet, I┬ácouldn’t┬áfind anything that told me how to deal with it on a day-to-day basis.┬á I was told that the ΓÇ£The 36 Hour DayΓÇ¥ by Nancy Mace and Peter Robins was a good reference book. ┬áI started reading it and it was so depressing that I had to stop. This book was written in 1981 and surely there must have been more progress made. ┬áCheryl was still in the early stages of the disease and this book focused more on the later stages. ┬áI continued my search online and found ΓÇ£Coach BroylesΓÇÖ Playbook for AlzheimerΓÇÖs Caregivers – A Practical Tips GuideΓÇ¥ by Frank Broyles, the former head football coach and later Athletic Director for the University of Arkansas.┬á This is exactly what I was looking for ΓÇô a day-to-day guide for caregivers. ┬áThis book put things into perspective for me. ┬áIt is a short, easy-to-read book and breaks the disease into the early, mild and severe stages.┬á I ended up buying the book for all of our family members so they also would know what to expect.┬á I┬ádidn’t, however, contact the AlzheimerΓÇÖs Association until much later when CherylΓÇÖs condition progressed.┬á Lesson learned: If I had to do it again, I would have contacted them much sooner.
Our AlzheimerΓÇÖs journey had begun.
I look back now and realize that early on I was in such denial about CherylΓÇÖs symptoms.┬á It is important to listen to friends and family members when they are telling you something appears to be wrong with your loved one.┬á Had I faced the reality that something was seriously wrong earlier, we could have been so much more prepared for the future. ┬áFor example, I could have applied for long-term care insurance for Cheryl. ┬áIt costs a lot of money to care for someone with AlzheimerΓÇÖs, but by the time we had a diagnosis it was too late to put these things in motion. ┬áNever did I think that Cheryl would be in a memory care facility in less than 4 years.┬á I also regret not reaching out to others who had been down this path before.┬á
The problem many of us have is not knowing where to begin. ┬áWe neither know what to ask nor who to ask it.┬á With this blog, I hope to be able to answer those questions for those facing the challenges this disease presents.
What is this disease? Learn as much as you can.
-Written by Don Baird as part of our ΓÇ£Lessons LearnedΓÇ¥ blog series. Be on the lookout for more wisdom and lessons learned from Don in the coming weeks and months.