Meet fellow Caregivers - Introduce yourself

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best...

Bill

Jump to this post

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best...

Bill

Jump to this post

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.

Jump to this post

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.

Jump to this post

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best...

Bill

Jump to this post

Hi @billacaregiver, welcome to Mayo Clinic Connect. I'm glad to see that you're following the Transplants group as well as the Caregivers group. I'm confident that you and your wife will be an asset to the Connect community and have plenty to learn and share. When appropriate, you may also wish to check out the various cancer-related groups.

The pandemic surely made medical procedures more anxiety-ridden, even for the calmest of people. Congrats, first of all on getting a successful liver transplant. May I ask what diagnosis led to her needing a transplant? Was the liver from a living or deceased donor?

Jump to this post

Bill, thankful for your thoughts to help with priorities. Your reminders are so helpful! I get stuck on solving a problem, wasting my time trying to fix something all by myself! Team work or leaving an unsolveable problem for someone else to tackle are good suggestions. I hope you and your loved ones have a great September!

Jump to this post

Hi Colleen,

Thanks for the welcome and I look forward to being part of the groups. I don’t think my wife will join at this time.

So, she was diagnosed with PBS Primary Biliary Cirrhosis, some 20 years ago, caused by the immune system attacking her liver. The time came for the transplant and a deceased donor was located. We moved to Rochester MN over four months ago when put on the on call list per advice of the doctor. Also, we didn’t want to travel home then back here four months later because of the pandemic. We’ll be heading home in a few weeks.

Her position at Gildas Club of Kentuckian is IT and I help out where I can in the kitchen, as a photographer, whatever is needed and at events. We are not social workers for client support however Gilda’s Club of Kentuckian has a great staff of professionals, hosting virtual support groups on-line and events. It’s all free. The Club House will open for in person services once it is safe.

Anyone living with cancer and would like to join can go to a local chapter or we take everyone from any state or country. Go to Gilda’s Club Kentuckian. Maybe you could post that information for the cancer group. I hope I’m not breaking any rules posting this information. It’s always something.

On flu shots, yesterday I had the FluAd for 65 and up and she had the normal dose at CVS.

Take care...

@billacaregiver.

Jump to this post

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.

Jump to this post