Lessons Learned: What Is This Disease?

Don with his wife Cheryl.

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.  I was leaving on a long trip out of the country, so I asked Cheryl’s mother to come and stay with her during my absence.  Cheryl picked her mother up at the airport, a route she had driven many times before.  On 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.  Shortly after our return I was having lunch with my son Drew.  When the subject of Cheryl’s actions came up I mentioned, “I realize I need to get some professional help to find the cause behind Cheryl’s behavior”.  Drew’s response was, “What do I need to do to make sure that happens?”  His comment irritated me because I knew I had put it off far too long.  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.  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.  He did the normal memory related exam and scheduled a battery of tests, including an EEG, CAT Scan and neuropsychological exam.  The neurologist told us Cheryl was experiencing symptoms of aphasia (inability to speak) but he did not know what the cause was.  He suggested for us to get a second opinion. That’s when I decided to take Cheryl to the Baylor College of Medicine.  They scheduled additional tests including a PET Scan (the test used to diagnose Alzheimer’s).  Because of Baylor’s heavy schedule with their other patients, they did not get back to us with a diagnosis until February 2009.  The doctor walked into the exam room and calmly announced that the test results had been reviewed.  Cheryl had Alzheimer’s 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 Cheryl’s symptoms.  It is important to listen to friends and family members when they are telling you something appears to be wrong with your loved one.  Had I faced the reality that something was seriously wrong earlier, we could have been so much more prepared for the future.  For example, I could have applied for long-term care insurance for Cheryl.  It costs a lot of money to care for someone with Alzheimer’s, but by the time we had a diagnosis it was too late to put these things in motion.  Never did I think that Cheryl would be in a memory care facility in less than 4 years.  I also regret not reaching out to others who had been down this path before. 

The problem many of us have is not knowing where to begin.  We neither know what to ask nor who to ask it.  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.

http://www.alz.org/care/

 http://www.alz.org/living_with_alzheimers_early_onset.asp

http://www.alz.org/care/alzheimers-dementia-financial-legal-planning.asp

-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.

AlzTex Admin

The Alzheimer's Association Houston & Southeast Texas Chapter (www.alz.org/texas) consists of families, caregivers, scientists, health professionals, and concerned citizens who are committed to finding a cure for Alzheimer's Disease and to easing the burden of Alzheimer's Disease and related disorders on patients and their families and loved ones.

2 thoughts on “Lessons Learned: What Is This Disease?

  • November 8, 2012 at 7:46 pm
    Permalink

    Thank you for sharing your journey with your wife. Your strength and determination to do what’s best for her is commendable. As you mentioned, it is important that we recognize the signs early. Continue to share your experiences as your experiences can benefit others or at least let them know they are not alone. God bless you. I am praying for you both!

  • November 11, 2012 at 4:15 pm
    Permalink

    I have recently traveled that journey with my beloved mother. Since she lived in a different city, I was not able to observe her behavior. However, when I made monthly visits to see her, I noticed changes, but thought they were signs of aging. When I took her to the neurologist in 2010, she was diagnosed with advanced dementia. She went on to be with the Lord (at 85 years) in August 2012.

    I have attended an Alzheimer Association meeting and just recently found out that a site will be located less than a mile west from me.

    Thank you for sharing your journey. I pray the Lord will continue to give you strength as you oversee her care; give the medical field the knowledge to combat this disease, grant her caregivers the proper care, love and compassion that your wife deserves.

    May God grant you His comfort and peace..casting all your cares upon Him for He cares for you. I will continue to pray for both of you!

Comments are closed.