This week has had me digging into my own questions about Alzheimer’s research and where the funding goes for our efforts to raise money for the Alzheimer’s Association.
I read an article this morning about the development of Aducanumab (Aduhelm^TM) which is receiving accelerated approval by the FDA in the U.S. as a treatment for Alzheimer’s Disease.
This is the first therapy developed that addresses the disease at the core of its biological impact on the brain. The drug has been shown to remove the beta-amyloid from the body, which is one of the culprits for the cognitive and functional decline.
While not a “cure”, it does extend the potential for the patient to live for a longer period of time with independence and to participate in daily life. Also it has been shown to help hold memories in place.
As I have been sharing about my father this week, I received a lovely note from a reader in regards to the walk we took with him. While it has been twelve years this December since we laid him to rest finally at peace, the impact on our family and on me has marked our story.
The seven years we had him here in town, and the shocking realization that developed over the course of about a year preceding that traumatic trip home, changed us. And I would say, changed us for the better.
For all the many tears and times when I wasn’t sure how I could keep going, God showed up faithfully for me and for our family.
I have often thought how grateful I am that as I drove that van to Decatur on a hot summer day, I was ignorant of the length of time it would be that we would become familiar with the world of Alzheimer’s, nursing care, ER visits and an emotional roller coaster of always knowing in the back of my mind that my dad was wandering the tile halls of a facility wondering when his family was going to come pick him up and take him home.
Looking back over the years preceding the revelation of the disease, we could see how he had increasingly struggled with words, with finding his way around the city he had grown up in and lived a large portion of his adult life outside of his service in the military. His temper had become more irrational and yet, we just excused it away until we were educated on this form of dementia.
We had times when our family just had to laugh to relieve the pain and changes it had brought to our routines. From 2003 on, we no longer spent Christmas Day in our pajamas doing what we wanted.
After the presents were opened, we dressed nice and went to get my mom. Off we trekked to the nursing homes where we took a cooler of goodies and presents for each of them. We sat around best we could and visited, always with my aunt’s step son in tow. He made the effort to come from New York every Christmas to see her.
Then we hosted Christmas dinner with Jim and my mom, our teens and then young adult children, finding all kinds of ways to make the evening light hearted, or begging to help me in the kitchen to get a break…
Alzheimer’s doesn’t just steal the mind of its victims, it attempts to steal time from families and joy from every day and special occasions, but I will continue to say as long as I have breath – God is good and kind and He carried us through.
Again, we could not have done it without the love and support of our family and friends.
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