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Caregivers- The emotional toll


KatieB

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Let's talk about what it's like to be a caregiver/family member, offering physical or emotional during the time of your loved ones diagnosis.

What do/did you find the most difficult to deal with after the diagnosis of your loved one?

What do/did you struggle most with?

What will/would have helped you most during this time?

Let's share some experiences and practical advice to help others who are walking with path behind us.

Hugs,

K

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#1 - worst thing was fear of the unknown. #1 help to that...reaching out to folkjs who have been through it... know you aren't alone. Ask how to handle things. Ask opinions, you aren't alone, ask those things here.

#2 worst thing - regret over the littlest or biggest thing you regret from the past. #2 help, understanding that LC is just a lousy hand to be dealt. And there is no way that you could have seen the hannd coming. None of us who didn't know LC before sat down to plan a life that may be affected by LC... we just don't.

#3 worst thing - contemplating loss and thinking that I would not only lose my loved one, but forget what it was like to love them. #3 help - Well, some of us get to keep our loved ones, some of us don't, BUT 4 1/2 years since losing my mom, my love for her is 100% in tact and her love is still with me just as it was when she was still here. Our love never departs.

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The most difficult for me was the fear of the unknown & scanxiety time.....waiting from test to test....feeling sooo helpless....wanting to know IMMEDIATELY what was up.

Then I felt guilty for feeling so blah b/c I knew my parents felt worse.

Honestly what helped me the most were just kind words & thoughtful gestures. I honestly cannot remember at what month my twins started crawling, but I can remember each kind act when my parents were both diagnosed. It can be something as simple as an e-mail to a thoughtful card to a thoughtful gift. FOr example a friend remembered my mom liked tea, she bought her some tea.

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What do/did you find the most difficult to deal with after the diagnosis of your loved one?

My little sis was our first experience with cancer. We knew nothing, and grasped at every little offering of hope and treatment that we could find. In retrospect, we should have listened to her, and let her make the choices. In the end, she finally said "no more". She realized that all the crazy tests, surgeries, etc. were not going to save her life. She died one month later, at peace.

With my Dad, we had some experience and did give him choices, and let him be in control, and while he only lived 4 months after diagnosis, we allowed it to be on him terms.

The most difficult thing to deal with with my Mom, was control. She had brain mets and her husband (my step dad) was elderly, and I tried to control her and her meds, and what she did and why, and it totally didn't work. It was only when I let it go, and allowed her to run her illness, and just be there for her when she needed me that it finally felt better for both of us.

What do/did you struggle most with?

The obvious one is facing their mortality. Trying to envision what life would be like without them in it. Grief.

What will/would have helped you most during this time?

Support. Gilda's Club was not around when my family members were sick. That would have been huge. Now that I know this place, I so wish I had known about it back then. I don't think it was around back then, but it would have been huge for me. I didn't know about it when I got sick either, and again, it would have been a huge support for me. So glad i found it now.

MI Judy

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What do/did you find the most difficult to deal with after the diagnosis of your loved one?

Honestly, fearing the loss was the hardest thing for me. Mom was diagnosed when I was at a pretty pivotal time--I was expecting a baby and getting ready for my husband to deploy, had just moved across the country with the Navy. The thought of losing her was just awful.

Another thing that I struggled with was being so far away. Mom was 2000 miles away from me when she was diagnosed. That so limited the support I could give her and I struggled so much with where the 'right place' to be was.

What helped the most was the support of my husband, and finding ways to make it work. Very early on talking on the phone to me became more frustrating and burdensome to Mom than comforting, so I learned to call everyday and check in with Dad and then see if it might be a good day to talk to Mom. And then we made the plans for when I would be home.

Going home to be with her was the best thing I did in the situation, and I wish I'd done it sooner. That's not always feesible for everyone though.

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