On a daily basis I come in contact with the caregivers that take care of some of my neighbors.
More times than not, they are family members but pretty often, it's a friend of the family, a home care agency or an non-relation live in caregiver but always .... I see the many ways they go above and beyond in their care-giving. I think the harshest thing I recognize in all of them is their outpouring of love and concern and often, fear of not knowing something they think they should.
Jim and Helen Whitworth are not doctors ... at least neither has that sheepskin hanging on their wall but both have walked the walk of the Care Giver and both do a heck of a job talking the talk. While their individual journeys are somewhat different, their first hand experiences have set them on a mission to help both professionals and family members learn how to make this precious time more comforting and less stressful for both caregiver and their charges. Their passion resulted in 2 Award Winning Books, (A Caregivers Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson's and Lewy Body Dementia) an Award Winning Blog, (The Lewy Body Rollercoaster) a highly recognized caregiver training manual ( Riding a Rollercoaster with Lewy Body Dementia) and another book soon to be released.
Jim's first wife passed away in early 2003. Annie, died with Lewy Body Dementia (LBD). At the time, most people, including the medical community, knew very little about LBD. In the Whitworth's live seminars, Jim tells of the mounting frustrations with the medical community and is often heard saying, " I tried to tell the doctors about symptoms that didn't match Alzheimer's and DID match what I'd researched about LBD but they said, 'Never heard of it!' and ignored me." That frustration led to his determination to make increasing awareness about LBD, and its interplay with other dementia his mission. Jim is an avid reader and meticulous researcher. He was an early member of LBD online support groups and in late 2003, partnered with four other caregivers to co-found the Lewy Body Dementia Association (LBDA). As its first president, he helped the organization start growing towards its present highly recognized status.
Helen does have a medical background as a nurse and educator. She dealt with patients with a variety of disorders and their family members but when her husband was diagnosed with cancer, she experienced care-giving from a family point of view. Soon after he passed away, she retired from the nursing profession to spend a good part of the following five years as caregiver for three more family members (one at a time), including a sister with Parkinson's.
They have been through a myriad of physicians, care facilities, in home aid and alternative options. They have seen the good, the bad and the horrific ugly yet their research, trial and error and determination to create optimal care and comfort has provided them with effective tools they now share with other caregivers.
I've had the honor and pleasure of working with Jim and Helen for the past 3 years and can tell you these are two people filled with compassion. They have and will always make themselves available to speak to caregivers and are diligent in answering e-mails, letters and phone calls from the many they have met on this journey. They generously give of their time to care facilities, in home agencies and caregiver groups around the US to raise awareness of LBD, it's interplay with other diseases and disorders and alternative therapies for dementia care.
Although Helen has a medical background, neither she nor Jim speaks with medical authority. Rather, they both bring you a well-informed caregiver's point of view.
In my estimation, their trio of books are the gift of Awareness and Empowerment for any caregiver so if you are looking for that perfect gift for the caregiver in your life or to gift yourself as a caregiver, consider this:
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