Caring for Chronically Ill Children

DRI_BrendaNovaktour001_300This month we’ve been featuring Brenda Novak and her annual On-line Auction to benefit Diabetes Research. The reason she chooses this cause is because her son has Juvenile Diabetes. More that 50 million Americans are caring for a spouse, parent, or relative with a serious illness. Particularly difficult challenges I’ve noticed with the aging boomer population is when a couple is nearing or at retirement age and one or both of them are experiencing health problems, and / or they have elderly parents that require assistance.  Many times because of the economy or other circumstances their adult children have moved back home.

When your child has a developmental or cognitive disability this adds an additional strain. Now you are not only concerned about caring for them until they become an adult but also through their entire life. Yes, all parents love and worry about their children and grandchildren, but it is not usual to have to literally plan out and carry the financial, physical, emotional, mental, and spiritual burden throughout their entire lives. Parents special needs individuals realize they will probably not live long enough to shelter and provide for their beloved child. I’ve witnessed aging parents barely coping with their own illnesses, and lingering on because they can’t let go of the the responsibility of the child they’ve cared for for over forty to fifty years.

63762326Author and journalist Gail Sheehy identifies eight crucial stages of caregiving in her book Passages in Caregiving: Turning Chaos into Confidnece.   Diane Rehm interviewed Gail Sheehey on NPR.  She draws on her experience caring for her husband, the founder and editor of New York Magazine, Clay Felker. Even though her advice is focused on caring for the adults and elderly, it still applies to the caregiver that also has younger relatives and children that require their assistance.

Seeking out qualified help is essential to survival in this kind of financial, mental, emotional, physical and spiritual storm.

Below is a list of  links that may be helpful to the reader or someone they know. The important part to remember is to take care of yourself – the caregiver. When you fail to do that there is no one left to care for the others and you become the burden.

National Association of Professional Geriatric Care Managers Program of All Inclusive Care for the Elderly (PACE) socialworkers.org

National Association for Home Care & Hospice

Working Caregiver

American Association of Daily Money Managers

Disability Resources

Interview with Stephanie, BJ’s mother.

BJMargaret: My guest today is Stephanie Abney of Mesa Arizona. She is a fourth grade school teacher at the American Leadership Academy. She is married to Jim, her husband of forty years. They are the parents of five children – four living. They have seventeen grandchildren. Their oldest child is their daughter Shannon, next is a son Matt, and then daughters Mandy and Kaci. (Their ages range from 27 – 37) Brian James Abney (BJ) passed away shortly after his sixteenth birthday. I met Stephanie when I joined ANWA (The American Night Writer’s Association.) She is an amazing woman. Stephanie, will you please tell us about BJ?

Stephanie: BJ, Brian James Abney was born Sept, 5, 1984. He was a beautiful blonde blue-eyed boy. He was always my healthiest child until he was diagnosed with cancer. He was lots of fun and had a great sense of humor. He was an incredible athlete – he wanted to play pro baseball and probably could have. He loved people and everyone was always drawn to him. BJ was known on campus as a gentleman, always holding the doors open for the girls, always encouraging everyone. He was charmer. He loved to work with his hands. He was very creative and innovative, always “improving” things. BJ loved woodworking and he was quite good at it. He loved music, nature, especially birds and reptiles, and his family. He loved the Lord.

Margaret: When was BJ diagnosed with cancer?

Stephanie: In 1995, at the age of 10½, BJ suddenly became feverish, clammy and threw up (he had just returned from a fishing trip with the neighbors and we thought he had heat exhaustion). After three days with no improvement, we went to the doctor who took one look at him (totally pale & weak), felt his spleen, did blood work and immediately sent us to the hospital.

Margaret: What was the diagnosis?

Stephanie: A.L.L.: Acute Lymphoblastic Leukemia

Margaret: How long did it take from the first time something different/odd/or wrong was noticed until you received the diagnosis?

Stephanie: BJ had what was referred to as “rapid onset” – one day he was healthy and playing baseball, the next he was sick. He complained of not feeling well on a Sunday, I cared for him at home for three days, called the doctor, went in the next day (Thurs) and went straight to the hospital – they gave him immediate blood transfusions (which saved his life) and ran tests and gave us the A.L.L. diagnosis on Friday – so in less than a week our lives were forever changed.

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