Wednesday, September 5, 2012

A Family’s Journey

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Have you ever read a book that makes you think of your own life? January First by Michael Schofield is one of them.

When my Mother first was diagnosed with early onset dementia, we were flabbergasted. Mom had not been “right” for a long time. She had totally withdrawn from society. She was cold and lack any empathy. She didn’t seem to care about us. She loved Dad and never stopped showing him but with us, most of the time she just was very very cold. She said she saw things that were not really there.

Dad had enough and at an appointment with her primary care doctor and marriage counselor, they decided she should go see a neurologist at Beth Israel Hospital in Boston since we as family demanded it.  Something was Mom with Mom and we knew it. We went to the doctor who had her do hours of neuropsychological testing. That first test found a diminished intelligence and problems with her frontal lobe. We were not shocked. We showed the results to my Mother’s relatives but they said that nothing was wrong. That came to foretell her family’s support for the rest of her life.

We got the diagnosis of early onset dementia but at age 50, what does one do with that? Dementia is an older person’s disease. Mom was an anomaly. It was a problem.  We contacted social workers but they were unsure of where to proceed with someone so young.

The first thing we did was apply for Social Security Disability. We gathered every document that we possibly could. Thank goodness Mom had work in the kitchen of a nursing home for 18 years. She had worked the proper number of quarters to apply. (This is very very important.) She was approved on the first application.

Then we looked for some sort of funding to send her to adult day care a few days a week. We never found a place that we could really afford but she did get into the Marge Crispin Center. She loved it. It also gave Dad a break.

Finding other services were bad. The Alzheimer’s support groups we went to were not as supportive as Mom had a different form of dementia and did not exhibit the same behaviors that other patients do. We gave up on those. Dad’s health was effected. Having a young Mother who had this was very hard on myself and my siblings.  I slipped further into depression and hopelessness.

Sometimes I thought that we were affected more by my Mother’s disease than even my Mother. She was happy. She got to read and play solitaire for hours. She was with Dad and for the most part happy and maybe even oblivious to what was going on with her mind.

Finally after 10 years of living at home, we needed to take Mom to a nursing home because we just could not do it anymore. We brought her to a hospital, where she was very confused as to why she was there. From the hospital, she went to the nursing home. She spent 3 years there until she finally stopped breathing in March.

Reading about what other families went through was tough for me but I felt a sort of reverse sympathy to the family based on my experience with my mother.  It was hard and emotional for me to get through the book because I too have my own mental health issues, after all this blog would not be around without them.

How far would you go to advocate for your child? In January First, father Michael Schofield and his family struggle to find the right treatment for his daughter Jani, who was diagnosed with schizophrenia at six years old. Join From Left to Write on September as we discuss the Schofield's memoir, January First. As a member, I received a copy of the book for review purposes.

14 comments:

  1. Jen, I am so sorry for what your mother and you and your family went through. This is a powerfully written post that shows what a difficult journey it must have been. Thank you for sharing your story.

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    1. I have a hard time remembering that it is over sometimes.

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  2. Thanks for sharing your story.

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  3. We're going through something similar with my dad and it's difficult. I'm sorry that your mom had to suffer at such a young age. thank you for sharing.

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    1. You and your family are in my thoughts Alicia. I hate to hear about other families going through similar things.

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  4. I'm so sorry for your pain, Jen. Alzheimer's is awful. My grandma (100 years old) has had it for about 14 years. Well, probably even longer than that. I can't imagine someone getting it at 50.

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    1. My Dad insists it was longer than that. Something about Mom was off. She changed a lot from when I was wicked young.

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  5. Having been through many similar things when my dad was diagnosed with brain cancer at age 56 (he also passed away this past year), I understand the struggle to find help. We spent almost 7 years giving him the best quality of life and help possible, but boy was it heart wrenching. Thank you for sharing.

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    1. Yep, while a little different, those 13 years were heart wrenching for me. I really miss my Mom that I knew a long time ago. Thank you for talking about your Dad.

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  6. I'm sorry Jen. You worked hard to find the right care for your mother.

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  7. It sounds like you cared for your mother tremendously!

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  8. I can't imagine the pain you and your family went through. My parents are in their early 50s and I am scared sometimes that I will have to make similarly difficult decisions as you did. My mom (at the same age I am now) lost her parents within six weeks of each other and it still affects her almost 20 years later. I hope you are at peace with what you and your family did for your mother's care.

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    1. My father is really struggling and I worry about him a lot. I don't have a big family and no real extended family and I really affected me losing Mom. There was one less person I could say loved me.

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  9. So sorry to hear that. We never think of people in their 50's living with dementia. That must have been so difficult.

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