Sunday, May 22, 2011

From Debbie in Westfield

My mom was the sweetest, kindest person I have ever known.  She was so generous and cared so much for others.  When she started to get ill the family ignored it or played along for a while.  I couldn’t ignore it anymore when she started to lose weight and didn’t get dressed into clothes but stayed in her nightgown for days.  It was the hardest thing in the world to take her to her primary care physician and say the word “Alzheimer’s” in front of her, I felt like I was giving her a death sentence.  Of course I know that I wasn’t the one who gave her the disease but I felt like I was the one who brought the whole idea into her life…. She was pretty well along in her disease by then and she was living in denial like the rest in my family at that point.  After the doctor’s visit a neurologist came to my family home to give her a simple test and I was amazed to find out that my mother had no idea what day it was, was month it was or even what year it was!!  I think we all take for granted that the people around us should just know these things but these are the simple things that disappear without anyone really knowing!!  Seems like it was all downhill from there.  She was already in stage 2, she rarely came out of her bedroom after that….she was scared and confused and regretfully I didn’t do much to comfort her.  I was so concerned that she was safe and fed and clean that I didn’t even think that she needed to talk to someone, that she might have “feelings” about her illness and need to talk about them.  I regret the talks that I didn’t have with her.  It didn’t take long before she was in Western Massachusetts Hospital where she lived for the next 5 years.  We were very lucky to get her into such a great program developed just for Alzheimer’s patients where she was safe and well cared for.  Earlier in her disease she had a stroke which left her on a feeding tube.  She had to learn to eat again and quickly so that she did not depend solely on that tube to live, we looked ahead and didn’t want that to be what kept her alive when the disease progressed to the point where she lost her chew…. I visited her daily (at least once a day) to feed her and to make sure that she was always clean and warm.  I walked through that door every day with a smile on my face and greeted her with all the love and respect that she deserved, it didn’t matter to me that she didn’t know who I was, I knew who she was and knew that the smile on her face was the most important thing in both of our worlds at the time.  Slowly she lost her walk and once she was confined to a wheelchair they asked us to find her a nursing home.  She lived out the last 3 weeks in a nice little place.  She died early in the morning on January 17th, 2007.  It is a day I will never forget!  7 years of struggling, first struggling to keep her safe then her struggle to know who I was, these struggles were so important until the next harder one came along, her struggle to talk and to chew and then to walk, it all ended with her struggle to draw her last breath…. I stayed up with her for 2 days praying that she would have even 1 moment of clarity so I could tell her all the things that I didn’t say when I was scrambling to take care of her.  It didn’t come.  To anyone out there who loved someone with this disease I urge you to talk now, don’t regret later what can be said now, and don’t assume there will be time…. Alzheimer’s has its own schedule.

Love you Mom!!

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