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Caregiving: I’m frustrated and exhausted.

Caregivers | Last Active: Mar 27, 2022 | Replies (223)

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@mkjames

Thank you Scott for sharing your thoughts. I’m equally sorry for your struggles, both past and present, well, & future for that matter. 😊

I know when we got the offer for hospice, the first time, it was absolutely shot out the window. The second offer was no easier than the first, but much needed. In just a few short days the stigma was evidently removed from both our minds. I will forever be grateful to Emerald Coast Hospice for what they did for our family, exactly how I feel about Mayo now. I wish there were some way to advocate for Hospice agencies to remove the stigma entirely. I’ll have to look into that....

Your wife sure was a lucky woman to have you care for her. My caregiving adventure didn’t amount to as much as yours, isn’t it a blessing to be able to care for the one you love (in a way you would like to be cared for)? To this day, I still look back and think how lucky I was to have that special time with my Granny. I don’t remember the bad, only the good, & it instantly brings a smile to my face. I sure do miss her, as I know you do your wife. They watch over us today and are eternally grateful for what was done for them through love, & one day you will be rewarded for that service!

🙏Namaste🙏

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Replies to "Thank you Scott for sharing your thoughts. I’m equally sorry for your struggles, both past and..."

Thanks for the kind words, @mkjames I agree with you about the need to advocate for a better and often more accurate understanding of hospice and all it can offer. We were lucky to have a great one in our small town, but unfortunately the hospital they were affiliated with decided they didn't need to offer it and they couldn't make it on their own (very small organization).

Hospice made my wife's care so much better and I will admit easier for me. The doctor came to our home, her meds were actually delivered, and her primary nurses were truly amazing with her! The only thing I told them they needed to add was a once a month thump and tap checkup for the caregiver! When prescribed hospice, the neuro-oncologist said she might make it 6 months, but most likely far less. I believe it was a result of the high caliber of care she got via home hospice she was able to fight an additional 14 months.

I, too, will have to look into how to better advocate for that care.

I hope the sun is shining wherever you are today!