Hey... I'm 30. My mom is 62. She has been struggling with fistulas and infected abcesses for a very long time. We've done many Womb Vacs, she's had many surgeries. and the abcesses keep coming back. She has a abdominal fistula that wont heal. shes been in and out of Hospitals and SNF facilities 15+ times in the past 2 years. Long stays.
Shes been on antibiotics for months now, and her surgeon and me are on first name basis basically. I've talked to him and her doctors so much. He was stuck on what to do as well. He didnt want to have the colostomy surgery because she is at a heavy weight and has COPD. and she is very weak. from being on TPN for so long. and the anesthesiologist didnt clear her for surgery.
Eventually he did cleared her. But there is a risk of her being on a ventilator. High risk. and.. I don't know if she could come off of it.
(There is a lot more issues with her.. but Im trying to summarize). Ive been her caregiver at home for the past 3 years. fulltime. Im her only family member. Its ONLY me. shes not mobile and isnt all mentally there. she cant make decisions very well. so basically the decision is kind of mine.... and I freaking hate it. I allready dealt with this, with my dad (ALS disease)
If she had the surgery theres a good chance the fistula will come back again, or she would have complications. the surgery itself could fail, she could get abcess again. it could never end.
Shes been on TPN (IV nutrition) on and off for a year. to treat her fistula without surgery because the doctor was really reluctant to do it. He knows her long history. in and out of that hospital for years. She has been so tired and scared. and she has no strong will to live. so I dont know what to do with that. Somedays shes happy and fine mentally. she doesnt have Dementia. But shes very childlike in thinking and cant grasp serious things... I love her so much and shes so forgiving of life and infinitely optimistic even when things are so dark.
But, She's on hospice now, but not "actively dying", yet she qualifies for Hospice because the doctors all agree without the surgery she has less than 6 months to live. But even with surgery its a dark road of uncertainty and could just be even worse. She has a bacterial abcess. and its come back 5 times this year. after they drain it. He said even after surgery she could have another fisula again. she has had a few fistulas before. her quality of life is hell. in and out, in and out. abcess after abcess.
We decided "together" that it would be better to stop the treatments.. I did ask her...what she wanted to do?...and told her the risks and pro and cons of each decision...
I have been indecisive this whole time going back and forth and its (absolutely killing me) its tearing me apart....because the final decisionis basically me. she doesnt remember any of our conversations. I feel like Im killing someone. But I cant take care of her alone anymore either. I am her sole caregiver and only family member. her daughter. and its been hell for so long.
I feel soo guilty and I feel like a monster.
Shes not on antibiotics anymore, and she is allowed to eat now, (after 4 months of NPO no food allowed, only TPN) and shes on pain meds. she says shes not in pain, but basically, this could takes months couldnt it?.. to pass from chronic bacterial abcesses??? I mean...I dont know what to do anymore.. I DONT WANT HER TO SUFFER. I was taking the doctors recommendation... I'm just.....I cant stop crying. I just want her misery to end. She is tired of the hospital.. is it the wrong decision?
our lives have been HELL this past 2 years.