Perhaps I should tell you that when Alzheimer’s entered our world my husband Paul was almost seventy years old. Along with that radical change, we found activities of daily living changed. Oh how they changed.
Arguments multiplied, bad feelings festered when my saint-like contributions to caring for his life were misunderstood. I tried. I questioned. WHY would a good God do this to His child? Did he not realize how much He had permitted in my life already? My six-month old baby dying in her crib - - and then the disappointment of the birth of my Down’s syndrome little girl two years later when I had just blown out 42 birthday candles. This seemed like a nightmare.
Then along came a dream of a different color. Kind of like a vision. We felt commissioned somehow, holding our bright-eyed little pathfinder in our arms; commissioned to help other children like Melissa. We knew we could do this with God as our pilot. So we founded Melmark, a residential school for the mentally challenged. We started long ago in the year 1963.
But back to Alzheimer’s and Paul. He died after doing battle with Alz in 1996. And since I am a six-month blog enthusiast, I have been hopping here and there and reading comments by caregivers. But you know what I have discovered? I find myself wondering as I read what seems to be the consuming distress of the caregiver as they witness the disintegration of the personality of their loved one.
Now, understand please, I did not like it one small bit either, BUT it is what it is.
All his life Paul had been Vice President, Chairman of the Board, President, Founder, father of six GREAT kids, always a leader as well as my pal and lover since college days.
But know something? When he was stricken with this dreaded disease, he suddenly became none of these. However he carried a huge slice of his loving personality WITH HIM into the disease. He had Parkinson’s disease as well as Alzheimer’s, and I remember sitting on the arm of his chair planting kisses in his neck until he giggled almost non-stop and said “I think I’m going to have to tell my wife about you.” And I agreed.
Hey, he loved me. Oh, there is so much more to tell. He needed me and while his body was still here with me, I was going to show him I loved him, coming or going.
So, my advice for caregivers would be “Don’t cry for the man you loved for so long, love the man you have right there breaking your heart and making you weep when the sun goes down. But stop long enough to look up unto the hills and trust God. He knows what He is doing. Hang tough! It’s not the end of the world. It’s life.”
Now, you will probably never listen to what I have to say about living with Alzheimer’s and Parkinson’s and Down's syndrome. But to deny reality and weep day after day about your portion in life - - - there simply is no future in that. God knows you can handle it. Call upon Him.
To will what God wills produces peace.
Tuesday, December 7, 2010
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Thanks Miggy. I was just browsing and re-reading your blog. I appreciate this one as I care for my aging parents.
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