Enida S. - Beside the Mountain: How My Daughter Found Her Strength
I am Italian and went through a nightmare that is now becoming a nightmare to so many families with young children at home. And this nightmare will certainly bankrupt them.
My husband came down with Alzheimer's at 48 years old. He was sick for 7 years (but he showed signs of this for at least 10 years prior ) and died at 54 years old in 2004. This April, it will be ten years since he's passed.
I had 3 girls at home at that time; one was 7 , one, 14 and the other, 18. My middle one, who at that time was an angry teen with issues of her own, started to show signs of breaking . She started drinking, smoking and CUTTING. I was losing it . I wanted to jump off a bridge myself. I remember locking myself in my walk-in closet for hours in the dark, crying and at times, talking to God and hating Him. I really don't know who gave me the strength to stop and finally face the reality of the situation.
The story is long but the point is that I told my middle child (that loves to write) to put down everything on paper-- all her fear , emotions , her anger at me , the lost hope for her dad and loneliness.
She did and she wrote a beautiful memoir as her final thesis at Emerson College in Boston and she won the Dean's award for best thesis in 2011. Her book is entitled "Beside the Mountain" by Stefania Silvestri.
My life is all over those pages, and her life is there for people to read and judge . My in-laws hate me because she talked about them not believing me when I called them, realizing soon that they were in fact blaming me for his disease , calling it depression . We did make peace at the end but now this is bringing all the hate back out again. They didn't read it as a cry for help, as it indeed was at the time, or as a love story as it turned out to be in the end. They only view it all as something shameful to talk about. I'm hear to tell you that it isn't.
My daughter wrote a book but I don't know how many people read the book . I don't believe no one really understands this subject of early onset Alzheimer's. Alzheimer's is a disease is now rising, especially among the young. Currently, about half a million people suffer from this disease at an early age, or, younger than 65. Again, my husband was only 48.
I feel it is a book to share in order to learn what this does to a family, to a young child and how it affects the finances of a family . We were savers and I was able to pay for nursing home ( over $70,000.00 almost 10 years ago for 15 month. Right now, it is double that. This does not even include medicine, adults pads, specail beds, alarms , extra showers, special chairs, etc. etc.) and to send my girls to college and to keep them on the right path.
All three of my girls have college degrees; one has an MBA , one has an MFA and my youngest child is doing Teach for America in Oklahoma City . They are wonderful people , full of empathy and compassion. This is what this disease teaches you--but at what cost!
So many things need to change for helping these young families . They need to understand the power of savings. It's not only for retirement, but to support a family if something this tragic happens to them . It's the money allocated for the research that needs to change; we need more money for the cure. The life in a nursing home needs to be better for these people, more Aides and better pay for them . I worked in the one my husband was in and it was an eye opener . I was working in dietary to be near him. A very hard and physical job, terribly paid, but I didn't care since I was there for him .
All this is in the book, all this is out there to try to make people understand how this disease is going to affect a family . I am proud of my daughter. She was destroying herself. She was like me, locked up in her own walk-in closet, but we were able to both come out of it and share our story.