A Very Special Day

“Do you have a suggested release date in mind?” Paul Burt of Open Books Press Publishing asked.

I hadn’t thought past, “I have a publishing contract!” and was unprepared to answer.

 “Is July 26th do-able?” my husband, Mike, asked. Immediately I knew he was right. I crossed my fingers and waited for Paul to respond.

“Why that date? Is there some significance?”

“It’s my Dad’s birthday and the date he passed away,” Mike answered.

“I’ll do everything I can to make it happen. It will be a real tribute to your father,” Paul said.

 I agreed.

We were deeply saddened when we realized that we might lose him on that day. Then his hospice nurse said,“Wouldn’t it be wonderful if he died on his birthday?”

Seeing the shock and confusion her remark caused, she went on to explain. “What could be a more perfect gift than to see God on your birthday? I’ll pray for him and for you that he passes in peace.”

He did. So today, his birthday and the day he got to see the face of God, we honor him

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Rodger Carducci

 July 26, 1926 – July 26, 2009

Caregiver Cover Web

Confessions of an Imperfect Caregiver: For caregivers and those who will become caregivers. I hope our story will hep you understand that you don’t have to get it right every time in order to succeed and sometimes being a little bit crazy is exactly what is needed.
Available via Amazon and Barnes&Noble. To purchase a signed copyyou are invited to contact Second Chapter Books in Middleburg, VA (540-687-7016) or via email: secondchapterbks@gmail.com

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Someone In Your Town Needs Help

Caregiver needs caregiver

Someone  in your town needs help.

Often when we think of caregivers our thoughts go to people caring for aging parents with Alzheimer’s disease. However, that is only part of the story. Included in this vastly growing demographic are spousal caregivers, teens caring for parents, grandparents or siblings, parents caring for children with lifelong disabilities and friends caring for those with no family support. Most quietly care for their loved ones for years often going without sleep, proper medical care, or time to take a bath. They skip meals and rarely leave the house.

Caregivers need someone to care for them. Not every day. Not for hours at a time. Caregivers long for someone to say, “I’m going to the store, make a list of what you need and I’ll pick it up for you.” When you do this include an inexpensive bouquet of flowers or a pint of ice cream as a surprise.

Every now and then make two batches of whatever you are cooking for dinner and take one to the caregiver.

Drop by on the weekend and let the caregiver take a shower or a bath free of worry their loved one will fall or need help.

Simply sit and talk to him or her for a while. Let her vent. Let himwatch a football game if he wants to.

Little things mean so much to caregivers. They are not superheroes or saints. They are people like you and me. People who need kindness and understanding.

Someone in your town needs help.

The following information is from The Family Caregiver Alliance, National Center on Caregiving, https://www.caregiver.org/selected-caregiver-statistics

Who are the Informal Caregivers?

Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study, e.g., age of care recipients surveyed or relationship of caregiver to care recipient.

Magnitude

  • 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1]Updated: November 2012
  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia.
    [Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer‘s and Dementia , Vol.7, Issue 2.] – Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21% vs. 17%.
    [MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers]Updated: November 2012

Economic Value

  • Caregiver services were valued at $450 billion per year in 2009- up from $375 billion in year 2007.
    [Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.]Updated: November 2012
  • The value of unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S., and the aging population 65+ will more than double between the years 2000 and 2030, increasing to 71.5 million from 35.1 million in 2000.
    [Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management, Vol. 2; Issue 1]Updated: November 2012

Gender

  • More women than men are caregivers: an estimated 66% of caregivers are female. One-third (34%) take care of two or more people, and the average age of a female caregiver is 48.0.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females. 40% of male caregivers use paid assistance for a loved one’s personal care. Approximately 14.5 million caregivers are men out of the 43.4% who care for an older family member.
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • The gender balance shifts to close to equal participation among 18 to 49 year-old-care recipients (47% of caregivers are male), while among the 50+ recipients, it tips to females (32% male, 68% female).
    [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.]Updated: November 2012
  • Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.
    [Kramer, B. J. & E. H. Thompson, (eds.), “Men as Caregivers,” (New York: Prometheus Books, 2002).]Updated: November 2012

For more facts and figures go to https://www.caregiver.org/selected-caregiver-statistics

Thoughts of Rodger

Bobbi with Rodger
As I prepare for the offical launch of Confessions of an Imperfect Caregiver on Saturday, July 26, 2014, I have been reading passeges of the book in order to revisit memories of him as a young man and to remember the years he spent with Mike and me. He is in our thougths and prayers daily and it is my sincere hope that his story touches you as deeply as it touched us.

The following excerpt is from Chapter 9 – Confessions of an Imperfect Caregiver.

Whoever wrote in Rodger’s chart, “Intelligence is estimated to be below average,” was very wrong.

Rodger was a serious scholar, described by his younger brother as, “a bookish teenager who took advanced degrees in mathematics and literature at an early age. He tried to help me with my schoolwork, but what came easy for him was very hard for me. He’d try to help me with algebra but he’d go so fast I couldn’t keep up.”

Rodger graduated Summa Cum Laude from college. He spoke six languages, including Latin, Italian, French, German, English, and some Yugoslavian. Remarkable for a man who grew up on a farm in Tornimparte, Italy.

“We raised or grew everything we needed to live. We grew our own wheat, and at harvest time all the farmers would go in together and rent a threshing machine. It would take a long time before all the work was finished, but we did it. Then the women make pasta and bread. Every day, my mother, she get up, make the polenta, and go to church. Then she come home and work all day. She cook, she clean, she open a store in our house. She do all she can to make money. My father, he’s in America working in the coal mines. Life is hard for everybody,” Rodger said.
The family farm included a vineyard, and their homemade wine was sold in the store alongside the produce and bread to keep the farm running and the family clothed and fed.

While Rodger kept the books for both the vineyard and the store, his younger brother helped more in the fields, with the harvesting, and in the gardens. Rodger also did his share of hard work. His shoulder was scarred from a deep cut he received while carrying heavy loads of grapes down a steep hill to be crushed and fermented into wine.

“It hurt like hell, but there was nothing I could do. I had come too far. I couldn’t go back, I had to keep going.” The cut to his shoulder must have been very deep. It damaged a vein in his wrist that remained enlarged and sensitive the rest of his life.

The more I learned about him, the more I admired him. There I was, caring for an extraordinary man whose native intelligence was far beyond my own. He had struggled to help his family survive while still little more than a boy, only to be struck down by an illness few people understand, the treatment of which left him with huge gaps in his memory, making it impossible for him to do anything but menial labor.

It became obvious to me that bits of his superior intelligence remained. Even after all the years of being drugged and probed and experimented upon, he’d managed to build a life and raise a family. Now, in his old age, the deficits were mounting. Sadly, the blessings of his youth, combined with the severity of his losses, would leave him aware enough to know something was very wrong but unable to figure out what it was or why he couldn’t do the one thing he wanted most—take care of himself. The lengths to which he’d go in order to prove he could do it would result in seven years of cat-and-mouse games that tried us both and bound us together through shared experiences that were at times funny, but far too often were frustrating and confusing for both of us.

“It don’t make sense,” was a phrase he used almost daily. More often than not, I had to agree.

To purchase a signed copy fo Confessions of an Imperfect Caregiver contact Second Chapter Books in Middleburg, VA by email secondchapterbks@gmail.com or via phone (540) 687-7016

Avaialable in print or ebook form on Amazon and Barnes&Noble

Was I Crazy?

Crazy lady cartoon for caregiver

“You’re a little bit crazy, you know that?” my father-in-law said.

It wasn’t the first time he’d accused me of being crazy and it sure as hell wasn’t the last. Despite the fact that he’d suffered from mental illness long before age-related dementia set in he was convinced he could take care of himself and I was out of my mind to think otherwise.

Sometimes I agreed with him. About the crazy part anyway. Isn’t it considered crazy to keep doing the same thing over and over expecting a different result?

By that definition we were both nuts.

He figured if he took every opportunity to take off down the hall without his walker whenever my back was turned he’d convince everyone he didn’t need it. After all, he’d only fallen once and it didn’t kill him. I hoped if I kept catching him and leading him back to safety he’d begin to accept the walker and use it without prompting.

When he developed Dysphagia and could no longer swallow regular food and drink, I prepared fresh purees for him every day while doing everything I could to make them healthy and tasty. I learned that a lot of his favorite foods could be prepared that way. It was worth spending a bit of extra time so he could enjoy his own version of whatever meal we were having. Pureed hot dogs and potato salad on the 4th of July. Pureed turkey and dressing for Thanksgiving worked very well. So did the pureed pasta with homemade spaghetti sauce. I’m still proud of the pureed tuna and tomato sandwich and pureed cupcake he often had for lunch. Was I crazy to go to all that extra work instead of ordering prepared purees for him? Hormel makes a line of foods for people with Dysphagia and I did order some of them. But, I didn’t want to rely on them. Eating was one of the few pleasures he had left and I wanted him to experience the flavor of his favorites. He was convinced I was crazy to think food could be dangerous.

“Something’s wrong with her. Food goes in your stomach not your lungs. You can’t get pneumonia from eating,” he’d tell the doctor at every visit. Eventually the doctors tuned him out, not bothering to explain again why he couldn’t have a sandwich or big juicy orange.

Sometimes I couldn’t help but wonder, was I crazy to become a caregiver? Was I crazy to lie awake at night trying to figure out new ways to get through to him? Was I crazy to keep fighting for him and with him when it became clear that no matter what I did or how hard I tried he would continue to fail?

Maybe. But sometimes crazy is what it takes to get the job done and maybe my crazy was just what his crazy needed. I hope so.

For more information about Dysphagia and where to find products for your loved ones click on any of the following links:
http://thickit.com/products/purees/?gclid=Cj0KEQjw5-OdBRDW3ceD9fL0r4QBEiQAW7htXesa0NQ2vOYLfvQkg6Je4E7uLezTgEiuIwXFAHWIHu8aAnrt8P8HAQ
http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_ThickEasyBreakfast&cond_id=117&cat_id=122

http://www.swallowingdisorderfoundation.com/swallowing-support-groups/

http://www.patient.co.uk/support/dysphagiaeu

http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_Dysphagia&cond_id=117&cat_id=117

http://www.medicinenet.com/swallowing/article.htm

http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-20033444

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