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Meet fellow Caregivers - Introduce yourself

Caregivers | Last Active: Nov 12, 2023 | Replies (707)

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@djangomay2

I'm John and I have just joined the Mayo Clinic caregivers group. I have been a Mayo patient since 2012 and have had several operations and procedures there. A native of St. Paul, Minnesota I currently live in State College, Pennsylvania, where Penn State University is located. I joined the U.S. Foreign Service in 1963 and served in many international locations: Italy, Vietnam, Malaysia, the Congo, Jamaica, and Australia. I was also assigned to the White House office of Drug Abuse Policy from 1982-1984. I met my French wife in Vietnam in 1966 and we were married in the Vatican in 1968. I retired from the Foreign Service in 1991 to join Penn State University where I worked in various positions in the Australia-New Zealand studies center and in the Office of Global Programs. I was the director of Education Abroad from 2000-2010. I also taught undergraduate courses in communication and completed a Ph.d. at the age of 59 (is that a world record for oldest Ph.d. completion?). I retired from Penn State in 2010 when my wife began showing signs of dementia. I have been her primary caregiver, keeping her at home with me until a year ago this month when I was hit by a car while crossing the street on foot. The driver, a Ph.D. student in my old college, told the police he was late for a meeting and was distracted since he was eating, drinking and texting. I had to undergo an operation on my right ankle, which was broken, and was hospitalized for two weeks for post-surgery rehabilitation. I was unable to take care of my wife during my hospitalization, of course. During that time our two daughters, who live in Minnesota and California, placed her in a skilled nursing residential care center in our town. She has been there ever since. I used to visit my wife every day for lunch and dinner. But in the covid 19 era, visits have been severely curtailed. After a short period during which no visits at all were allowed, I am now permitted brief visits under strictly controlled conditions twice a week. While my wife's care is generally fine, I am the only person who speaks to her in French. She mostly dozes and remains isolated in her room, although recently the facility has restarted group exercise programs. One of the things I've learned as a caregiver for the past several years is that there is very little information easily accessible to people looking for information on where to find care and how to evaluate care. You're basically left to your own devices to find the appropriate options. Admittedly my wife was admitted to her facility under rushed and unusual circumstances. Nevertheless I have been looking around to assess whether she is in the right place with the right level of care and have been unable to find anyone who can help me think this through. I have consulted friends, the local Center for Aging, gone online etc. without much luck in coming up with information. The local PA Center for Aging seems mostly to work on placing seniors eligible for Medicaid into facilities that will accept government insurance. As a result of all my fumbling around for the past few years, I am pretty much aware of what's available locally. I would like to think, however, that a society like ours with urgent need for medical care for the aging would have better navigational tools to help people like my wife and me know what the various options are and how to assess them. We are seriously considering moving back in a few months to St. Paul, where we have a home. I am depressed at the thought that I will have to begin the search for care all over again. I am somewhat more familiar with the terrain in St. Paul than I was here in Pennsylvania, because I had to find a facility for my mother 20 years ago. But my information is out of date and I dread having to start all over again. I look forward to any tips members of this group have for navigating the caregiver journey.

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Replies to "I'm John and I have just joined the Mayo Clinic caregivers group. I have been a..."

Wow, what a story. You have been traversing a tough road. When you look for a facility, there are key questions to ask. How many people are on duty at night? How many showers or baths a week? My mother was at Madonna Towers in Rochester, MN and I was shocked to learn an incontinent person only received one bath or shower a week. Any more than that was a special request at additional cost. Ask about the activities program. Even people with dementia need things to do: folding laundry, being read to, watching a video, etc. My mother lost the ability to read and was so pleased to have someone read to her. As she said, "I don't know what the book is about but it is exciting." Pet therapy and music therapy are also things to ask about.

Hi John this is Ben in Pasadena. My Mom is 101...she lives with me and luckily she is in general good health, although she has dementia and can’t walk anymore. About 5 years ago, she was in.a SNF which was competently run, but unfortunately the unfamiliar surroundings caused her to have a fall and her head hit the concrete,leading to a hematoma around her brain. Fortunately she recovered after we moved her back home but it took a long time. Since then I have a strong aversion to institutional settings. If she needs care down the road I will probably go the palliative route and opt for home hospice. As far as searching for resources I can certainlysympathize. I too have a Ph.D. And yet have a difficult time navigating the system and understanding bureaucratic jargon. One thing I can suggest is taking an online course on elder care. Gerontology is a rapidly expanding field, and I would bet that there must be something on Coursera you would find useful. You can also find course syllabi online which should help point you in the right direction. Good luck!