Meet fellow Caregivers - Introduce yourself

Thank you. I have enjoyed the contact and comments on this group of amazing facts from this forum.

@jstoll1247, I would be happy to meet you in one of the transplant links that Colleen has shared with you. You need only to click on one of the links, make a response or just say 'Hi'. I can meet you there and introduce you to our heart transplant members who would be eager to answer any of questions from the patient point of view.

Hi, my name is Tammy. My husband (53) had a stroke 9 months ago and I am really struggling and would love to talk with people who have gone through the same thing.

Good morning @tammy1968 I am sorry to read of your husband's stroke, but am pleased to e-meet you here on Connect. I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer. She was diagnosed at 49. I also suffered a stroke myself two years ago.

The journey of a caregiver is a challenging one for sure! While each of our patients are unique, there are many commonalities between the struggles of caregivers and the demands of caregiving.

What are you struggling with the most right now?

Strength, courage, and peace!

My spouse was diagnosed with bladder cancer, went thru chemo prior to surgery. Spouse had surgery recently to remove bladder, prostate and some pelvic lymph nodes. We are thankful that it went well. Recovery has been very slow. As a caregiver I am struggling a bit with this, have been doing this for a lot less than a lot of people on this site; since January 2020. I have some health issues as well, chronic pain. My adult children have some major issues going on as well. I am trying to care for my spouse as best as I can, adjusting to the new urostomy and help needed. COVID-19 has made it impossible to have family or friends to help out, so I am having a hard time. Often, I am not as patient as I need to be, especially since I am trying to prepare meals that are palatable to him, and just feel overwhelmed. Then, of course, I feel guilty, since so many others have it so much worse.
thanks

Hello @bnthrjay Welcome to Connect and thank you for being here!
Struggling with, and feeling guilt, are both very common feelings for caregivers. I wish we could take guilt and throw it in the trashcan! We, as caregivers, can only do the best we can with what energy, etc. we have! I like to say we need to remember Wonder Woman and Superman only exist in the comics! There are no superheroes in caregiving....rather just regular, real folks trying their best for their loved ones! Making adjustments is such a constant need and I wish I had suggestions for you. I know my wife's palate changed often with her disease and one favorite food would suddenly become taboo on the menu! I never understood this, but tried to take it in stride and began to try others things. For the last several months she would only eat a boiled chicken breast, white rice, and frozen mixed vegetables (with the green beans removed) 🙂

We can each only try our best and feel free to ask any questions you have and I am wishing you all the very best!

Strength, courage, and peace!
Scott

@jstoll1247 Hi I received a heart transplant a couple of years ago. I see your Husband is on the list to receive a Heart. I would like to offer my help if you may have a questions about the process.
How are things going? Has your Husband received his Heart yet?
Have a Blessed Day
Dana

He was scheduled to go into the hospital on September 8th but we had a set back. He went to the dentist for his final cleaning and the dentist decided he needed to take out his last wisdom tooth as a precaution before the surgery. After the extraction his throat was badly bruised and red so they put him on antibiotics for a week and he has been rescheduled two weeks from this past Tuesday. We are both ready for the surgery and the doctors and nurses at Mayo have been outstanding. Appreciate your reply and I will definitely reach out as questions come up. God Bless You

@jstoll im so glad to hear you are getting close. It was a great idea tho to be completely ready. Ill be waiting to hear of the next phase and will be available with any questions.
Have a Blessed Day
Dana

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