I lost my husband to IPF.. He died at home on my living room floor with me doing compressions on him

I am racked with guilt, he told me he was afraid of suffocating (the expected end to his condition if a lung transplant couldn’t be found)
I promised him that a palliative team would be put in place with drugs on hand to ease his last hrs and relieve his suffering.
In the end it was a catalogue of missed opportunities, no emergency pack of drugs to help him, professionals woefully inadequate, and me screaming at the person on the end of the 999 call that I wanted to stop doing compressions, begging them to stop the count oof "1234,1234,1234"on and on, when I had his DNR in my handbag.
No-one would make a decision with a consultants say so, the only consultant was in a meeting, and when we finally got a prescription, it couldn’t be filled because the pharmacist was at lunch!
The medical professionals ignored my concerns for weeks, and they robbed my husband and my family of a peaceful end. I am angry, I am broken and I am utterly lost without him. Its been two months and it seems that the grief is getting worse not better.

I had a similar situation with my partner of 23 years passing. The doctors ignored her illness, wrote letters that were wrong, called her in for appointments that were cancelled. 7 years later she was sick, really sick but no one would listen to her. I called, wrote letters. Almost thrown out of hospitals in the end, she could not take it any more and ended the suffering herself. I found her and tried to bring her back. It was the worst nightmare but you know what that feels like. You know what I went through. We must have had the same terrible feeling.
Bloody doctors are like a protected species. They are impossible !
I wish you the very best and I am so sad for your loss.

1 Like

Katherine,
my much younger brother passed away 4 years ago, from this horrible condition, we were so close and loved each other very much. He told me that there was no cure, I am still grieving for him, and didn’t believe him when he told me that his time to be with us wasn’t very long. I do understand very well. My brother wasn’t very happy in his marriage, in fact he was downright miserable. His wife didn’t “do” illness, I knew this and yet I beat myself up for not asking him to come and stay with us. My husband would have welcomed him with open arms, when I read posts here, full of love and devotion, I feel so guilty. Six months to the day my best friend died suddenly from a stroke, we had been friends for nearly 72 years, then my beloved husband died 14 weeks ago tomorrow. We had been married for 2 weeks short of 59 years. I miss him so much. I am housebound with a few illnesses and I have only been out twice since he passed away. Ah well, we had a wonderful marriage and our 2 children, now in their 50’s and our grandson, have been brilliant in their support. Both of them live 70 miles from me, in opposite directions
I miss my husband more and more as the weeks go by.

Blessed be

MaryL

1 Like
Back to top