Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Monday, November 8, 2010

The Hero Sandwich Generation

I have been told that I am a part of the Sandwich Generation, individuals caring for small children who also care for aging parents.

My Mom, Evelyn
My Mom, Evelyn was diagnosed with dementia shortly after my son, Weston was born. Dementia is a degenerative illness much like Alzheimers disease. Individuals suffering from dementia experience memory loss, changes in mood and personality, speech and motor difficulties as well as difficulties performing day-to-day functions. It is a devastating and life threatening illness.

My Mom was known for her quick wit, her sparkling exuberance and her steadfast intelligence.  She was the one folks would come to visit when they needed sound advice. It has been so difficult watching my mother slowly succumb to this disease. Our family is struggling to coordinate her care and maintain healthy relationships with one another. It has not been easy.

For my Mom's safety, we finally had to place her into an assisted living facility that specializes in caring for individuals diagnosed with dementia. It has been like a Godsend for my mother and our family. But still, I feel guilty. I feel guilty that I can not care for my mother the way that I would like to care for her.

I have come to realize that dementia sufferers experience many of the same issues faced by children diagnosed with ADHD and Prader Willi Syndrome.

Like Weston, my Mom is easily agitated and requires assistance handling transitions. She is impulsive and bores easily. She is overwhelmed and "shuts down" when situations are noisy or chaotic.

My Mom is also a lot like my son, Nicholas. She perseverates over and over about certain subjects. She has poor emotional control, cognitive and behavioral challenges and is obsessive/compulsive.

And much like the care I provide to my children, my mother's care requires many trips to physician's offices, psychiatrists and specialists.

I can't help but feel like I have been in "special care" training for the last 11 years of my life.

Raising two children diagnosed with special needs and an elderly mother diagnosed with dementia, I do not feel like a part of the Sandwich Generation.

I feel like a part of the Hero Sandwich Generation!

What New Yorkers call "The Hero Sandwich"

The Mom Sandwich


The Henrys said...

I'm so sorry to hear this about your mom. I can't imagine what you are going through. Try not to feel guilty. I know it is easier said than done! The facility that your mom is in sounds like it is the best place for her.

The Hero Sandwich sounds like the perfect way to describe your situation!!

Lisa said...

Thanks Deb, yes, the Memory Care Unit has been great. This facility really strives to become a leader in providing care that is based upon a true understnding of the disease. Thanks as always for your comments. I really do appreciate them.

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