Meet fellow Caregivers - Introduce yourself

Count me in

Great, @pattyinal. Pop over here and follow the group: https://connect.mayoclinic.org/group/caregivers-dementia/

I was a caregiver to my Mom who passed away this past May. She had long term care insurance so I did not have to provide day to day care but I was the one adult child who was physically present. It was weird not having the 3-4 day a week visits and the trips to the hospital. I guess Mom knew I would have more on my plate... my husband was diagnosed with Stage 3 Squamous Cell Lung Cancer at the end of August. For now, finished with radiation and chemo, and now on to immunotherapy. I work full time but grateful for a company that allows as much time off as needed so I am available for treatments, tests and meetings with all the doctors. Most days we are "good" and other days there are the whole spectrum of emotions floating around. So I'm here to "hear" and help take care of me.

@mcleslie Indeed, you are in a good spot where your employer allows you the time off you need. And I bet you have let them know, so they will continue that outlook moving forward. Does your company offer you EAP [Employee Assisted Programs]? If so, they can help refer you to support groups or help in your area. Of course we are always here for you, but face it, sometimes that in-person connection can feel like more, if that makes sense. So, tell us if you care to share, what you are doing for yourself?
Ginger

I'm not sure about EAP but I am looking around for a "home" so I have a local support family. So these days,I take myself to the library, getting lost in a good book is a favorite. I paint my nails every Sunday. I cry in the shower and let the worry flow down the drain. I allow myself to binge watch something on Netflix. When it is really hard to cope, I do laundry or clean, just like my mother, lol. It becomes a meditation. I'm an alum of cognitive therapy so I take out those "tools" one of which is allowing the storm of emotions come knowing that they will pass. We laugh every day, that's one of the many reasons why I fell in love with my husband. We take time off from cancer, it is always there but we put it aside when we can. It is a marathon so I try to pace myself. Thanks for asking! I'm here to share.

Hello. My name is Debbie. My husband had a heart transplant on September 12, 2019 at the Mayo Clinic in Phoenix. While I am so grateful for his new heart, I’m struggling with our life changes. There’s a battle within me knowing on one hand it’s an absolute miracle what has happened in his life, on the other hand I have been his caregiver for years and feel like time is passing me by. This is not even close to the retirement I envisioned for us. I love him with all my heart and I don’t want to move on without him. I just feel stuck.

Hello @debbief, and welcome to Mayo Connect!

I do applaud you for your honest expression of feelings. It really took courage to write about your feelings as you did.

I am sure that this is a different retirement journey than what you had anticipated and that while you are grateful for your husband's new
heart, you are still struggling with your caregiver responsibilities.

I am sure that others on this forum can appreciate your feeling of being "stuck." I'll invite @IndianaScott and @debbraw and others to join you in this discussion.

Hello @debbief I am sorry to read of your husband’s health issues. A tough road for him for sure.

You’re right about our lives changing due to caregiving and a loved one’s major health condition. It was true in my wife’s case with her brain cancer diagnosis. It was never the future we had thought about, but we had no choice, especially her.

It did take time for us to understand each new reality as it unfolded on us.

@debbief I can so relate to what you say about being stuck and this not being the retirement you had planned. My husband and I loved to travel and it all came to a crashing halt when I got sick. He became my caretaker and missed so many things he wanted to do. I’m a lot stronger now and have shown him that I can be on my own for several days, so I encourage his camping trips, fishing expeditions, etc. We make some big travel plans always knowing that we can cancel if I’m not up to it. This is definitely not what we had planned, either, but......
What care do you do for him now? Can he go places? Have you thought about short trips with other women?

My name is Deb and I'm currently a caregiver to my husband, who was diagnosed with Glioblastoma early in 2019. I also was a caregiver to my mother, who passed away from cancer at the age of 44, back in 1987.
This is certainly a very stressful time of my life and I hope to hear from the rest of all you amazing caregivers.
Deb