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Friday, May 8, 2015

Alzheimer's Disease: The Long Goodbye, A Mother's Day Tribute.

about 1951

 In memory of my mom

 I am re-running and re-working  this post I wrote a few years ago about my mother's journey through Alzheimer's disease and its effect on the final years of our relationship. I still think about her throughout everyday and miss her, endlessly. I still wish I could smell her soft hair. I still crack-up out loud, by myself, at memories of some of our antics. My mother had a fantastic sense of humor; she was famous for her one-line wisecracks; and she traversed this devastating disease with humor, love, trust, and grace.

It has been seven years since Alzheimer's took its final ravage on on my mother's brain and body. I had spent eight years, (with lots of help from my three siblings and many caregivers), caring for my mom.

My mom on High School Graduation day
Caring for someone with Alzheimer's disease is just  like being back in school. Everyday you learn more, and try to remember what you have learned in order to apply it to the next lesson. You are constantly being challenged and tested by your loved one. Pop quizzes are numerous, and you are usually unprepared.

Nancy Reagan said, "When you have met one person with Alzheimer's disease, you have met one person with Alzheimer's disease". This is so true. Every patient has a slightly different presentation and every presentation changes by the day!  

My advice for those who are fumbling through the early stages of care,  and feeling like they cannot do anything right to protect their loved one is:
 "The only plan, is to plan for no plan to work as you planned".

It may sound odd, but the fondest memories of my mother are during the years she had Alzheimer's. She became a kinder, gentler mom; happy to be helped. Happy when I covered her limitations in conversation, or explained how I also forgot the same sort of things. Happy to laugh, and we did!  Happy to have her children there, and we were there, almost everyday.  

One funny memory is, in the early stage,  she developed a new-found, very enthusiastic love for shopping,  and urged me to take her clothes shopping everyday,  "like girls",  she would say.  At that point, she viewed herself as a young woman and I, her girlfriend.   Of course, she no longer carried a purse or money, so who wouldn't love shopping! I paid for all of her whimsical selections - happily. 

She had spent 30 years always providing for her children first, and during her illness a new pride in her appearance developed. She loved her weekly beauty parlor visits along with her "compulsive"  (and free) shopping jaunts.  She was so beautiful.  At 82 her skin was almost flawless.  Everywhere we went people would compliment her beauty and she would blush and beam. For the first half of the illness, she loved going out to restaurants and having cocktails - she would go everyday or evening if we were able to take her. And we usually did.  She was very persuasive.

She lived in the moment and enjoyed most of them.  Yes, she did have her battles, especially in the early stages when she had a good deal of self-awareness. I would crumple when she would ask me, "Why haven't I slipped away yet, why do I know this is happening?".
Because of Alzheimer's Disease
Because of Alzheimer's, my mom spent her last eight years surrounded by her children. Had she been healthy, we probably would have visited two or three times  a year. Instead, we moved her close to all of us, and few days went by when one of her children was not with her. Because of Alzheimer's', she saw her four adult children become bonded in the commitment to make her days happy and safe. A strong bond  we still have today.

We became close siblings because of Alzheimer's disease, we became more patient because of Alzheimer's disease, we learned how to selflessly give to others because of Alzheimer's disease, and we learned of the healing power of laughter when you just do not know what to do next.

During the long goodbye to our mom, we became better people in the world.  We graduated "Alzheimer's University" with honors. I am so proud of my entire family. I thank my mom for living through the long goodbye with graciousness, humor, and trust. I thank my siblings for loving so unconditionally. I thank God that we could all find the positive in a situation that many cannot bear. 

My mom had the brightest blue eyes you have ever seen. They shone bright and sparkled all throughout the disease while the light in the eyes of others fell dull. At the moment of her passing, after seeming to be asleep for over a day, she opened her sparkling eyes with her last breath and looked up toward Heaven. With her children around her; I believe her message was:  that her light shines on in all of us. This was my mom's final lesson to her children.

 My mom and her sisters

Thank you for reading,