OUR 11 YEAR SUMMARY

In a recent fund raising event for Alzheimers, I was asked to say a few words. When I was asked to say a few words about my experience with Alzheimer’s, I was excited and honored.  Then when I got home, I thought --- REALLY…..  What do I say?   What do I say to those who have taken the same journey and are still on that journey -- as I am. 

So I tried to condense our 11 year journey into just a few minutes.  I will attempt in the following weeks and months to expand on that journey. 

 

In 2008 Joyce was having difficulty with episodes of short term memory loss.  We didn’t really think much of it ---- we were just getting older.  Her mother and three sisters had been diagnosed with Alzheimer’s but still I was not coping with the possibility that my beautiful, intelligent, active and outspoken wife was not so anymore (EXCEPT FOR THE BEAUTIFUL).  How could I possibly know what she was going through.  Her frustrations her anger her emotions.  I didn’t,  and in looking back I wish there had been a way for me to understand early on.

 

Her diagnosis of dementia/Alzheimer’s came and I was not surprised.  What did surprise me have been the next 11 years.  As you are aware the ups and downs the monitoring the wonderful times – me telling myself  “DO NOT GET FRUSTRATED – SHE DOES NOT KNOW NOR IS SHE ABLE TO CONTROL WHAT SHE DOES.”  I was 6 foot tall and felt I was bulletproof.  Believe me you are not and neither was I.  Early on when her cognitive functions were good, she made me promise not to put her in a care facility.  I did.  So for 11 years I kept my promise ---Then in Feb of this year I fell and broke my femur.  I weighed 120 pounds at the time.  The lord works in mysterious ways sometimes.  I could no longer care for her and long term care in home was not possible.  Brings me to today.  Either get help or wind up in nursing care myself..  Because I promised her not to move her into nursing care the GUILT was enormous when I made the decision and that was from my hospital bed recovering from the fall and subsequent operation.    My daughter was my rock during this time.  She did the heavy lifting.  Looking for and evaluating Memory Care facilities.  I believe this to be one of the most emotional times.  Is it right?  Is it time?  Can I still care for Joyce at home?   It was yes yes and no 

 

So what do I conclude with -  those of you who know the disease have or may experience the daily care process so I won’t nor talk about the details.  Each person and each family is different.  What I would like to do is encourage support groups – family or otherwise.  Encourage those of you in the medical profession to impress on your colleagues the necessity to inform and help prepare both the patient and the caregiver for the journey that will have many turns. Detours,  stop signs and yes smooth sailing too.

 

I visit Joyce everyday and there are times that I think she is fine ----- but I know better