Just wanted to share the progression of my mother’s condition

[Blueclouds07]

Hello,

Since November it was hectic for my mother and for us her family. She was admitted in November due to severe dehydration and UTI infection then they decided to go for PEG tube and to give her IV fluids and antibiotics, she got better but she was unconscious and unaware of her surroundings. It was a difficult period because they couldn’t do the PEG under GA or LA doctors were very worried and didn’t want to carry responsibility so they decided to discharge her.

One week later she got pneumonia and dehydration came back with UTI then she was admitted in another hospital. They wanted to go for PEG but this time with interventional radiology but couldn’t work so they went for naso duodenal tube and completely stop any oral feeding. She has been discharged in January she is stable now but I feel I lost my mom. She is not there anymore.

[LuisRodicioRodicio]

Hi Blueclouds!

Sorry your situation.

I don't know how I can help you.

A big hug.

Luis

[Blueclouds07 in reply to LuisRodicioRodicio]

Thank you Louis

[Purrlie]

My heart goes out to you and your family. Sending a big hug, Purrlie

[Blueclouds07 in reply to Purrlie]

Thank you Purtlie

[Tweetybird21]

Hi Blueclouds,

first of all a big hug to you and your Mum. It sounds like you've both been through the ringer and I'm sorry you've been let down by the lack of support from the health system. Did you get a chance to talk to your Mum about her future wishes? I went through a similar story with my Mum and have also been through the NG tube/PEG dilemma. Do you have any hospice support at all? My Mum found the NGT uncomfortable but got on well with the PEG. If that's what you think your Mum would want then I would try and find a consultant who specialises in this area. If not, then I would get some advice from the palliative care team. It's tough going to watch but I'm sure your Mum knows you're there and looking out for her. xx

[Blueclouds07 in reply to Tweetybird21]

Thank you Tweetybird21

Actually the communication with my mother is lost now I assume. She contacts with us through eyes only.

I tried to know her wishes or at least what she wants but I really don’t know. Some times I feel that I am lost and I can’t even communicate with her but what I am sure about is that she is aware of us around her and supporting her.

I am trying to do my best to at least give her a quality of life.

I think she is stable now although I feel she doesn’t like her situation now.

Thank you for your support and wishes.

[golftennisdad]

Such a difficult time. My dad passed March 2020 from PSP. We found that involving hospice early was great help. A nurse would come weekly and we were able to keep him at home along with home health. We avoided hospitals almost entirely because we found that doctors that didn’t know my dad and his condition always tried to over-treat him and create more problems than they solved. Reach out to hospice, keep her as comfortable as possible and remind her of all the people that she loves and that love her.