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Book: "The 4 Steps of Long Term Care Planning"
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You may contact me at 801-298-8676 or tomday@longtermcarelink.net
From 1989 to 1992, my mother attended to my father at home. He was flat on his back with Parkinson's Disease. He was as stiff as a board, couldn't move a muscle, could only whisper, had lost his vision and hearing and had dementia. Because his swallowing muscles barely worked, it took us 2 hours to feed him and because of dementia he called out day and night in a terrified whisper. She chose to care for him at home because she hated nursing homes. She was in excellent health and planned to use their savings on herself when he was gone instead of spending the money on paid care. Besides this was back when Medicare offered forever home care as long as there was a medical need, so she had some help. His need was a catheter. Despite the home care aides, the strain of caring for my father destroyed my mother's physical and emotional health. Against her wishes, I put him in a nursing home where he eventually died. After his death, I had her in and out of a mental institution and hospitals for over a year before she was stable enough to go to an independent retirement community where she could get supervision and meals. She suffered from some form of dementia or psychosis, which eventually got to a point where the facility couldn't care for her. We took her into our home in September of 1994. Shortly after arriving, she fell and broke her hip and although she recovered, she made up her mind she couldn't walk. That made it easier to care for her with her abnormal mental state. We also received aides, therapists and nurses from Medicare because she had a bizarre fluctuating blood pressure that had to be monitored every day. She also came home with a pressure sore from her original hip surgery recovery in the hospital. They didn't take very good care of her during the two week stay in the hospital rehab wing. The sore eventually developed into an ulcer that went so deep, it exposed her spine. We also received home health care for that. In the Fall of 1997, Medicare changed the rules and cut off home care for chronic patients. We were contemplating a nursing home for Mom but she contracted pneumonia and died at home in December of 1997. Susan's father suffered a stroke in March of 1998 which deprived him the use of his left arm and leg. He was taking care of Susan's mother at home but Medicare had changed it's rules and would no longer provide home care help for chronic conditions, so he went to a nursing home on Medicaid. He died there in January of 2000. We took care of Susan's mother in our home for 2 1/2 years and she died in August of 2001. I suffer from from the residual effects of an immune demylinating neuropathy--called an anti-MAG neuropathy--which makes it difficult to walk and affects the use of my hands. What minute amount of writing I do is executed very slowly with extreme difficulty, and what I do on the computer is with my unsteady left index finger and a specially modified mouse. None of my other fingers are steady enough to type. I use voice recognition software-- Dragon NaturallySpeaking -- which allows me to to produce articles and books about eldercare and to communicate via email. At the tender age of 64, I am already needing limited help with my daily needs such as filling out forms, signing my name, feeding myself and dressing. I also experience an intention tremor in my hands and legs which causes my hands to flap around when I try to use them and makes my already weak legs very wobbily. Many people with neuropathy experience unbearable pain. I am so fortunate to have only mild, chronic, burning discomfort and limited peripheral numbness. After chemotherapy treatment seven years ago, the condition stabilized and I actually improved a little until I went into relapse. Even though I don't have cancer, I started a new treatment three years ago using a lymphoma therapy called Rituxan. This has eliminated most of the numbness in my hands and legs but has worsened my ability to walk and use my hands. I had to stop the treatment two years ago due to an allergic reaction. This last treatment basically cured the disorder but for whatever reason left me with difficulty in walking and using my hands. I want you all to know that because of our experience, Susan and I are strong advocates of long-term care insurance. We each bought a policy 13 years ago when I was still insurable. The cost was only $113 per month for both policies, but because I didn't know much about the insurance then, I made a poor choice and bought inadequate benefits. For only $30 more per month we could have bought an unlimited benefit at $100 per day instead of the $200,000 at $100 per day we signed up for. At least we were smart enough to buy the compound automatic yearly benefit increase so the original benefit has grown after 11 years to about $160 per day and about $320,000 total. We had a premium rate increase last year to $149 a month. This is still very affordable for the benefit and we would continue to buy the insurance even if it went to $300 a month. But insurance is only a part of the long term care puzzle. Besides not everyone can qualify for or afford insurance. A comprehensive care plan should be in place during retirement. It is foolish for people to ignore the possibility of needing long term care and not structure a plan for it. I am uninsurable. I can't get medical insurance either. But the VA healthcare system is taking good care of me. In fact I would like to make an aside and sound praise for the excellent care I receive at the local Veteran's Administration Medical Center. No one else was ever able to diagnose my condition. Not only did the VA diagnose it but they came up with a treatment--chemotherapy--that kicked the disorder in the pants, eventually resulting in a cure. I cannot praise the doctors and staff enough. I have learned recently that the VA health care system is considered the best health care in America. I would certainly vouch for that. Now a little about my background. First, as you can tell from the stuff I have written for this site, I am not an outstanding literary talent. My strengths are research, analysis and organization. I have a BA in Physics and an MBA. I also have a professional CLU designation from the American College. My interests are not mainstream and some of you might find unusual those things I find interesting. I could spend countless enjoyable hours researching topics on the internet or in a library. I spend a great deal of time reviewing financial statements, not for assignment, but for a hobby. I love museums, history, geography, statistics, foreign languages, music and technical studies. We live in Centerville, Utah. We have a mormon-sized family of 7 children and 20 grandchildren. Five of our kids are married and live close to us. One lives in Denver and our youngest is away at school finishing up her masters degree. Susan and I don't know the meaning of "empty nest" syndrome. With our family so close, at least one of our kids or grandkids comes by every day. Twelve years ago my neuropathy forced me to find something to make a living that didn't require me to stand or use my hands. Since I believe so strongly in long term care issues, I started marketing long term care insurance. That only required me to talk which I do very well. Before insurance, I taught retirement planning seminars at two local colleges and did fee-based financial planning. About a three years ago I had to retire completely from any activities outside my home office since it is so hard for me to get out and walk, use my hands or stand. Currently I help maintain the web site, write articles and books and entertain phone calls from people requesting help from all over the country and sometimes even from overseas. I also supervise promotional strategies for the National Care Planning Council, design our products and strategies and provide oversight for the Utah Eldercare Planning Council. Over the past two years, I have become an expert on the veterans aid and attendance benefit. I also do interviews for radio programs and for journalists writing articles about the subject. All of these activities do not result in any renumeration for me but I help promote the council and those who derive income from its operation. Your suggestions and comments are appreciated. Happy browsing Thomas Day
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I am passionate about long term care issues. I and my wife, Susan, (she took the brunt of it) went through it with all four of our parents--hers and mine. And at the tender age of 64, I'm confronting the reality of long term care for me. Because of our experience, this site and the launch of the National Care Planning Council is our attempt to help other caregivers find information and help.
