Jodie and William Reed

Jodie and William Reed share a tender moment in a garden. 

Above all, love.

William “Bill” Reed lives by that advice, which he imparts in his first book, “Lessons from a Disabled Caregiver: Thriving Together and Maintaining Independence with Physical Disability and Dementia.” 

Immobilized for nearly a decade by progressive and untreatable nerve and muscle diseases, Reed writes of how he has tended to his wife of nearly 55 years, Jodie, as she weaves her way through the cognitive decline of dementia.

“It takes a positive attitude – as difficult as that is at times – perseverance, and ingenuity to overcome the many problems you need to solve. When it comes to caregiving, you need all those attributes; but love is the most important,” he said.

“Love is what keeps you going. You want to help. You want to make them happy,” he writes. “You want to make them feel safe. Most of all, you want them to feel loved. That is the key not only for their satisfaction and behavior but for your success as a caregiver. The love comes back to you and helps you maintain your health, happiness, and sanity.”   

Reed’s book, available on Amazon, is a testament to love as well as a primer for others facing challenging caregiving responsibilities. It is also a resource for those with physical challenges. It covers topics from handling grief, financing, safety and end-of-life planning.

It is also a tribute to a loving relationship that began in Boston in fall 1964 when a fraternity brother introduced him to her.

They married July 16, 1966, near Jodie’s parent’s home in Granby, Massachusetts.

“We’ve had over 55 years of a nearly perfect marriage. We remain extremely happy despite our challenges,” said Reed, who attended Pennsylvania State University and earned a B.S. and masters in mechanical engineering.

Jodie received her bachelor’s degree at Colby College in Waterville, Maine, before heading to Boston University to obtain her teaching credentials. After a short tenure teaching, she relocated just across the Charles River to Cambridge to work as a professor’s assistant at the Massachusetts Institute of Technology. 

From the beginning, Reed recalls, he was attracted to Jodie by her beauty, her youthful spirit and sunshine smile.

He said she retains those attributes.

“Even now when she walks down the hallway, everyone talks about her beautiful smile,” he said, smiling. “And she’s two years older than I am but people think she’s the younger one.”

The Reeds moved to Ahwatukee from northern California in November 2019 and shortly after they noticed signs of dementia. 

“Jodie started showing signs of memory loss 15 or 20 years ago. We had a psychologist evaluate her in 2007. He thought her memory was normal for her age; neither of us believed him,” said Reed. 

“She was re-evaluated in 2013 and 2016. I stopped her from driving in 2017 as she got lost, even in the small town we lived in for 30 years. At that point, neither of us could drive. However, after not driving for almost two years, I learned to drive a modified van with hand controls.”

 “We never wanted to leave our home of over 30 years in California. Knowing that Jodie had dementia, the long-range plan was to move near our son in Ahwatukee because if anything happened to me, she would need immediate support,” he said. 

“In July of 2019, I realized that our situation was untenable. Neither of us could drive, and I couldn’t leave Jodie alone even for lunch with my friends once a week, so I decided to implement the long-range plan.”

As incapacitated as he was, the wheelchair-bound Reed performed all household duties, including cooking their meals. 

“We looked at several houses, but all would require significant, expensive modifications, and it was unclear how long they would be suitable for us,” said Reed.  “Moving here would provide family life and support. The senior living facility would reduce my workload, even though we’re in independent living.”

Bill and Jodie Reed live in LivGenerations/Ahwatukee. Their son, Mike, also lives in Ahwatukee and has two daughters attending the University of Arizona and a son who is a Desert Vista High School sophomore. Bill and Jodie also have a daughter, Kris, who lives in Georgia. 

Since the book was completed in June 2020, there have been even more changes in the Reeds’ lives.

“During the period covered in the book, I was her sole caregiver. In July, 2020, I broke my leg and had to turn her over to memory care. Within one week she fell and broke her wrist, and then her hip.”

He said he was determined never to be without her again. With his disease and her dementia, changes became part of the future. 

But being separated was not one of them. 

A battle with melanoma further tested his resolve.

“One of my keys to successfully overcoming one’s challenges is ‘be your own advocate,’” Reed said.

 The Mayo Clinic recommended two immunotherapies followed by surgery. 

“As my muscle-related diseases are autoimmune, those treatments, like the COVID vaccine, would accelerate my loss of strength and risk my ability to be independent.”

“There was no hesitation to take the vaccine, or to accept Mayo’s treatment plan, because my main goal right now is to survive Jodie. Putting her in the care of others after I broke my leg was a disaster. I don’t want that to ever happen again.” Their future remains a study in adaptation.

“Because our diseases are progressive, no solution is permanent,” he said. “What works now will not work later, requiring new solutions again and again. Thus, I gained considerable practical experience on numerous subjects related to dealing with medical challenges and caregiving that would be helpful to many others with different challenges, not just those like ours.

“Recognizing that, several people strongly encouraged me to write a book to help others. That is the sole reason for the book and the class I will teach to a senior living community early next year.”

Reed was referring to a Zoom class on Feb. 17, 2022, offered through the Grand Learning program at Sun City Grand. 

“The intent is to prepare seniors, average age 55 to 70, for unexpected medical challenges and provide them with keys for success in overcoming them,” said Reed. 

“In addition, they’ll  receive information about the contents of the book, ‘Lessons from a Disabled Caregiver’ on which the class is based so they’ll know where to get the information they may need in the future.”

Pre-registration is necessary, said Reed, and can be made at grandlearning@scgcam.com. A $19 fee is charged by Grand Learning and the class size is limited. 

In the interim, Reed said his book has been well received on Amazon, and locally. 

“I had a very positive book signing ceremony here at LivGenerations,” he said. “A University of Florida professor plans to teach an honors class based on the book and so far, Amazon has published 12 five-star reviews. 

Reed’s book also has a foreword written by Dr. Marwan Noel Sabbagh, a board-certified neurologist and a leading expert in Alzheimer’s and dementia.

“The story of Bill and Jodie Reed is a case study of physical and psychological resilience,” Sabbagh wrote. “The story itself is both inspiring and informative and practical. Often there is no ‘how-to’ manual on caregiving in dementia. This is a very good version of a ‘how-to’ manual.”  

Still, Reed reminds readers that there are many bumps along the path.

“An Alzheimer’s caregiver watching a loved one morph from what was once a capable, intelligent, wonderful person into someone entirely different, generates many intense, unfamiliar emotions,” he said.

“My own struggles in this regard hit home with great impact by an email attachment from my sister-in-law, Nancy Reed, entitled, ‘Don’t Leave - An Ode to a Caregiver.’ I started crying halfway through it and couldn’t stop for about 10 minutes.”

Reed said he thought many caregivers will identify with this ode:

Don’t leave  

Hold my hand  

I recognize you  

But I don’t know your name  

I see your tears  

I want to comfort you  

But I don’t remember how  

You work so hard  

I want to help  

But my mind gets all jumbled when I try  

The music you are playing is beautiful  

I can sing all the words  

I see a small girl on a swing  

She sings with me  

I’d like to tell you about her  

But I am so tired  

She keeps fading away  

When she comes back, I will   

Don’t leave’  

  

“I was greatly affected by how well Nancy captured how it feels to have the love of your life for over 50 years slowly slipping away,” he lamented.

“Jodie is sensing it too. She often asks if I am going to always be with her. Beyond that, it passionately describes the confusion Jodie must be feeling – the frustrating inability to express herself, and the vague knowledge of what is coming.” 

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