May 28, 2019 at 12:15 pm #19443Ruth EdwardsParticipant
Has anyone else lost their spouse because of this disease?
They just couldn’t cope with being on the other side, watching the person they love, dying.
The limitations of the things you can now do because you’re on oxygen grows frustrating and depressing for both.
May 28, 2019 at 6:54 pm #19461
May 29, 2019 at 7:23 am #19465Ruth EdwardsParticipant
No @lwaldschmidt , I have PF. Diagnosed in 2015. Told I had a year…husband very suppportive then…but now I’m in my 4th year and for the last two, we’ve been separated.
We’ve tried getting back together and seeing only each other, while he lives at a different address. It just never lasts and the words we both say from frustration and fear are devestating and take their toll.
The stress of this disease, with no clear end in sight, took it’s toll on my husband. I just wondered if there was anyone else going through the same thing.
I’m only 58 and still relatively strong. I do require oxygen again 24/7 after the last infection I picked up.
This disease takes so much from us…but it feels like a tap dripping…you just slowly start to lose so much.
For all you caregivers that have been able to endure because it is rough on your side as well…Bless you!
May 29, 2019 at 7:29 am #19481Charlene MarshallKeymaster
Thank you so much for writing and sharing something with us that must be so deeply difficult. I am so sorry you’re experiencing this! I am sure others can relate, and I hope they connect with you too. This disease is so cruel not only on us, but on our spouses and partners as well. The difficult words from fear and frustration are so real, I’ve caught myself saying these to friends sometimes then being an emotional mess when I have to apologize because I never meant to hurt them. It’s so hard to navigate!
Free free to connect anytime, we’re always here for you. I completely agree about the difficulty of this disease, and send kudos to all the caregivers who have stuck it out with their partners. That can’t be easy, either. Thinking of you Ruth and thanks for sharing your story.
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