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Meet fellow Caregivers - Introduce yourself

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

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@l32

Hello. My husband has been fighting/managing a chronic illness for 7 or so years now. He has lived longer than most who have his rare disease. How do you all manage being your own person with being there for your loved one? suggestions? I endeavor to be grateful and to live in each day and not focus on what is down the road, emotionally, that is. There is so much uncertainty and then with the pandemic on top, we are not able to see our kids or grandkids in person much. Thank goodness for technology though. Sometimes I feel alone in this situation.....Also, I am sad to see my partners' health decline, to watch the person I love so much being so challenged. I am grateful for the life we have had and we still have and want to make it the best I can.

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Replies to "Hello. My husband has been fighting/managing a chronic illness for 7 or so years now. He..."

Hello @l32 My name is Scott and I was my wife's caregiver during her almost decade and a half war with brain cancer. I agree with you that life as a caregiver is a tough one and difficult to manage! I know each patient's journey, disease, and that of their caregiver are unique, but I can share some of my experiences in the hope they might be of help.

I found the only way I could manage was to look at caregiving as a fusing of my wife's life and mine in a way I never imagined when we married and figured our lives were joined then. Rather than two lives, I saw it as half of hers and half of mine. Her disease caused her to give up so much of her life and I, in turn, gave up parts of mine to help her. My view was I was living a new life in that way.

I appreciated your oxygen mask line. As much as I always understand this on an airplane, personally, I found this was not always possible as a caregiver. There were simply many times my wife's needs had to come first. Additionally, there were many aspects of our lives that took a backseat to where they usually had been before. Tasks became divided quickly between "must do" and "used to do". This helped me not become overwhelmed and being OK seeing certain tasks, etc. as unnecessary due to the new demands of a life with caregiving at its core. For instance, dust bunnies became pets rather than a byproduct of my lack of dusting and vacuuming enough 🙂

I also agree caregiving can be extremely isolating. I sure felt it was in my case and like you utilized as much technology as possible to combat those feelings. That's actually how I discovered Mayo Connect. I also used 'old tech' such as writing letters, which gave me something to look forward to in the mail and offered me something I could do at odd hours.

I hope this helped. I am always happy to answer any questions!

I wish you Strength, Courage, & Peace