Thoughts on the Diagnosis--Ginger's Story

As I look back about my feelings on the diagnosis...those were the good days compared to now.  This is so hard for me, as the diagnosis is nothing compared to the days now, which are getting tougher.

When he was diagnosed, it did not come as a shock.  I knew things were not good.  The diagnosis came in January of 2010.  I had suspected Alzheimer's since early 2006. Deep down I knew I was losing him little by little.  

I was not mad, but sad. 

My time alone in the evenings, when he was already in bed, was when I sorted my thoughts.  When I would go to bed and snuggle up to him, I would cry and pray for God's help.  I have never blamed God.  I have never questioned, "What am I to learn from this experience?",  or "Why me?", or "Why us?" 

We have had such a good marriage.  We became one early in our marriage, so I was missing part of me. I no longer felt complete.  I guess the best way to describe how I felt was...sad.

I started preparing for the future to take care of him by myself.  We sought to make memories while we still could.  

After the diagnosis, Dan and I came up with our own motto:

"We are on a journey.  We don't know how long the road is, but we do know God is with us."

Our lives have changed.  The motto has not.  God IS with us.

Diagnosed..."He has Alzheimer's"

It took quite a while for Dan to admit that he had a problem.  I saw that he couldn't complete simple tasks, among many other things.  The kids noticed that he was having a hard time getting his thoughts together and expressing himself.  We heard him say many times, "I know what I want to say, but I can't get it out."  It was difficult talking on the phone with him.  It was hard to know if we should help him finish his sentence, or let him collect his thoughts.  We learned, over time, that it was best to try to help him, so he didn't have to get frustrated.

When Dan decided it was time for him to see a doctor and figure out what was going on, we started with our Primary Care Physician.  The nurse began with a test of various questions.  Here is an example of some of the questions:
When is your birthday?
What day is it?
What is the month?
What is the year?
What season are we in right now?
I'm going to draw a circle, and I want you to put the numbers on it as a clock, one through twelve.

He failed the test.

After failing the test, our doctor sent Dan to a Neurologist.  Dan was given the same test.  He failed again. Next, Dan was sent for an MRI and CAT scan to see what was going on in his brain.  These tests showed that his brain was atrophying.

It was shrinking. 

 It was dying.

Our next doctor was a Neuro-Psychologist.  This was a grueling test for Dan.  It lasted 3 hours, and was draining and exhausting.  When the test was done, the doctor looked at me and said, "I am very concerned about your husband."  This was July of 2009.

Dan's low heart rate was better, but he still wasn't feeling well.  We were still concerned about his heart. One day, with a flushed face, Dan said he couldn't look up without getting dizzy.  I made a phone call, and was told to take him to the emergency room.  At the admitting desk, they began asking for his name and birth date, but he couldn't remember, so I helped get him registered.  His heart rate was dangerously high, and they thought he was having a stroke.  After more tests, they discovered that it was not a stroke, but a rather large hole in his heart, called an ASD.  The concern was that a blood clot could pass through this hole, and would go to his brain, killing him.  A cardiologist referred us to a heart surgeon, and open heart surgery was scheduled for August 3, 2009.

Dan was convinced that he would feel much better after surgery.  He believed that the surgery would allow more oxygen to flow through his body, and improve his thinking.  The doctors, on the other hand, had concerns that he would be much worse after surgery because of the toll on his body.  He was very confused after surgery, but didn't seem much worse after he recovered.

We had kept Dan's health problems, and our fear of an Alzheimer's diagnosis very private.  Dan didn't want anyone to know.  When the surgeon came out to update us on Dan's condition he made the comment, "I just hope this doesn't make his Alzheimer's worse."  Well, with 27 of our family and friends in the ICU waiting room...let's just say...our secret was out of the bag!  There were immediate questions and concerns.  The diagnosis was not official at this point, so it was hard to explain to everyone what we thought the future would hold.  Prayers were offered, and we were grateful for their prayers and support.

In 1999, Dan retired from the phone company, but continued working part time for as long as he was able. October 31, 2009 was my final day of work.  I retired!  My new job as "caretaker" began full time, as Dan needed more help, and needed me home to take care of him.  He had increasingly become more anxious when I was not at home, so being able to be home was a relief for him.

By Christmas of 2009, I was witnessing more strange behaviors from Dan.  He had become very angry with me when I told him to do more than one thing at a time.  I just didn't realize his frustration at the time.  I do now!  He taped our front door shut, so the cold air wouldn't get in, but this made the door useless when guests arrived.  Our daughter, Kerry, and her children were in town from Florida, and had prayed for snow for weeks, and boy, did God deliver?!  It snowed and snowed!  This caused great anxiety for Dan.  He shoveled snow for hours, and panicked when he didn't feel that he could keep up.  He shoveled off a deck that is never used, and even shoveled a path through the middle of the back yard.  No one could convince him to come in and rest.

And then...it was January of 2010.  It was a new year.  We are coming up on the anniversary for a very important, and heart-wrenching day.  Our resolutions for the new year were different from ever before.

We met with our Primary Care Physician who had the reports from our Neuro-Psychologist.  He sat down with me and Dan's sister, Beulah, in his office, and with deep concern in his voice he said, "I am sorry, but the news is not good.  It is Alzheimer's.  Dan has Early Onset Alzheimer's Disease."

Ginger ~ Loving wife to Dan

Something isn't right...Something is definitely wrong

After retiring, Dan began working for his brother's, Jimmy and Larry, who own a carpet store.  On a snowy, Winter day in 2005, Dan was outside at the loading dock, and unloading the box truck, when he fell out and hit his head on the ground.  Hitting his head rendered him unconscious.  He woke up, after an unknown period of time, covered in snow.  A second fall occurred weeks later, and he believed he was knocked unconscious again.

After these falls, things were never the same.  Something wasn't right.  Something was definitely wrong.  I was concerned.  Our relationship started to change with him needing so much assistance.

First, Dan began having heart problems.  He was exhausted.  He couldn't sit down without falling asleep.  At a doctor's visit we found out that his pulse rate was in the 30's.  The doctor thought it was a machine malfunction, but with the same results at the next appointment we knew it was truly a problem.  Then, I noticed Dan misplacing combs, nail clippers, keys, and at one point he couldn't find the remote to the television, which we later found in the pantry.  Next, Dan began experiencing a lot of anxiety.  He paced, and became very anxious around crowds, or with too much noise.  We altered our lifestyle, unable to stay for church functions in our church gym, or staying at parties with friends.  He became very dependent on me.

In June of 2006, we celebrated our 40th Wedding Anniversary.  With the changes in Dan, I was afraid we would never be able to celebrate our 50th.  All of our children and grandchildren, and many friends and family came to celebrate with us.  We made a lot of memories!

1st year of marriage to 40 years of marriage

Two weeks before our 40th Wedding Anniversary party, we took a motorcycle trip to Yellowstone National Park with our friends, Ray and Yvonne.  During the trip, Dan forgot how to back up the motorcycle, which was easily done by pulling a lever on the Goldwing.  Ray helped Dan, but he laughed about it and thought Dan was teasing.  Dan was always a big tease!  After this incident, it started setting in that we had a real problem when seeing Dan not able to perform a simple task.

We came home 2 days early from our trip.  Dan had anxiety about going through the mountain pass in Qurah, CO, and didn't feel he could make it safely.  I assured him it was fine to leave the next morning and go home.  He was relieved and brought us home safely.

I scheduled a doctor's visit for Dan and explained the concerns I was having.  The doctor asked Dan how he felt about this and Dan replied, "Everything is okay," denying any difficulties he was experiencing.

Six months later, Dan began to panic on the days when I went to work.  One day, he couldn't find his glasses, and was looking in a panic and asked me not to leave until we found them.  I found them on the kitchen counter, and he was relieved.

Another day, as I was running late for work, I asked Dan to fix me a bologna sandwich.  He said, "I don't know how."  I replied, "Get two slices of bread, two pieces of bologna, put some mayo on the bread, and put it in a sandwich bag."  He told me that I had given him too much information and he couldn't process what to do.  As I was preparing to leave, we had a discussion about his thinking process, and I let him know that the kids had noticed that something was not right, and we were all concerned.  I left the house with tears streaming down my face.  He called me on my way to work and said, "I'm sorry.  You are right.  I have known for a while that I have a problem.  Make me an appointment with the doctor and I will go."

Ginger ~ loving wife to Dan