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I would like to introduce to you a new book I have written called ‘Tough Care’ (ISBN 978-14663913765).
I believe it will be of particular interest to this group. In fact, the AARP website is contained in an appendix listing online resources that would be useful to home care givers.
Here is the blog link for the book:Tough Care blog - http://toughcare.blogspot.com
‘Tough Care’ is a tender and honest account of the time I spent caring for my dying spouse, in which I offer advice and support to those in, or about to face, similar situations. I derived the term tough care from the idea of tough love.
My wife, Celia, proudly served in the US Women’s Army Corps (WAC) during the Vietnam Era. Years later, however, she was stricken by serious illnesses that caused her to deteriorate from a young and vivacious woman, soldier, wife, and mother, to a severely incapacitated homecare patient. In ‘Tough Care’, I explain how her downfall stemmed from Type 2 Diabetes, which ultimately led to physical paralysis, dementia, and stroke before she died (far too early) at age sixty-four. I was born in 1951, so I believe that there are many of my fellow baby boomers that will benefit from the open sharing of my experiences as the lone caregiver for all but a few weeks of Celia’s last years on this earth. I was assisted by home nursing and home hospice professionals during her last few weeks. The whole process proved to be a long, painful, and arduous ordeal for a couple who had been life partners for thirty-nine years. Unfortunately, there are many who will inevitably face very similar circumstances. Both academic and industry studies have determined that homecare has been more prevalent than one might imagine in the US, and that future caregivers will not only be older, but will also have to simultaneously cope with ailments of their own. I try to be compassionate while I share many lessons that we all have learned/are learning as dedicated and devoted spouses. Lessons about love, respect, sadness, and joy. Group memebers are sure to find comfort in the advice that is offered, and will find references and online links to valuable resources such as the AARP, American Legion, VFW, Military Women’s Organizations, Diabetes Foundation, Hospice Care Foundation, and Home Care Foundation particularly helpful.
Type 2 Diabetes was the root of the problems that terminated Celia’s energetic and productive life so early. Causing the neuropathy that paralyzed her, it slowly and insidiously damaged the small blood vessels in her brain, which eventually led to a series of transient ischemic attacks (TIA) and strokes. The damaged blood vessels in her brain also generated the dementia that was probably the hardest thing for both of us to handle.
I share describe in detail the physical, mental, and emotional challenges I encountered while caring for my dying mate. I also summarize the lessons I had to learn the hard way, which I hope will benefit the many baby boomers now, or in the future. I share these lessons because I believe it is certain that life is too short to learn through your own experiences alone.
I was compelled by a sense of duty and responsibility to “soldier on” through what seemed like an endless succession of difficulties, ordeals, and personal trials. I felt I had the physical power and emotional strength to care for my wife alone. Looking back, however, I see that I should have sought better and more professional help sooner. I now realize the importance of communicating with doctors and questioning anything not fully understood. I have learned that nurses are the very backbone of medical care. Gentle, kind, and compassionate, they [nurses] could see Celia’s silent pain much better than I could. I also now know that hospice care, whether in an institution or at home, is the most humane way to help a loved one pass, and I believe that those who are at the end of their lives choose their own time to leave us behind.
I know from personal experience that survivors feel guilt whether or not they deserve to be guilty. The trick is to not let this guilt turn into blame, and to accept that death occurs due to circumstances beyond anyone’s control.
I also know that recalling memories helps with the healing process. My wife has gone to a better place. I am certain that she is glad to be there. I am also glad that her suffering has ended and she is now in a place of rest and peace. I made sure she received every form of dignity and respect I could imagine, including her final interment with full military honors in Arlington National Cemetery. I sincerely hope this post will provide a lot of the support, advice, and information that many others, unfortunately, will likely need.
In terms of my own background, I am a retired Army Officer. During my military career, I attained a BS in business administration at Athens State College, Alabama, and an MBA at New Mexico State University. I also served as the principal training developer and senior instructor on automated and manual administrative systems for the US Army Reserve and National Guard. I culminated my Army career as the director of operations for a large mainframe computer facility in the Pentagon. After my retirement form the Army, I co-founded and served for sixteen years as president, CEO, and as a senior automated systems architect of DINA, Inc., a twenty-five-person computer system integration firm. I simultaneously served as technical project manager for several large Department of Defense-distributed processing projects. I am now retired for a second time, and currently live either in Las Vegas, Nevada, or at my secondary home in Arlington, Virginia.