Still here ...

[MRSYafffle]

We are still here, frailer and sadder. Lost count of the number of chest infections since the last post.

She usually responds to antibiotics but hasn't this time.

She is receiving less than teaspoons of thickened ensure with her medicine mixed in.

She almost finished her second course. The home are happy that she can open her eyes and engage. She's on advanced care plan to stay in the home.

Once she has finished this course in a couple of days they're having a review. They involve the palliative care team if no improvement.

Three weeks ago she was still able to be hoisted into a chair, she's bedbound now.

Sleeping much of the time. I have told them I have failed her as she didn't want a peg fitted to avoid this prolonged suffering.

It seems very wrong that we are continuing in this state with the home celebrating some some sort of recovery despite the very obvious decline.

The cruelest disease.

Rambling post over, much love to all on this path and their families who are watching on.

Still on ' the list for chc review ' I've given up.

[SunriseLegend]

my very dear husband is not far behind this stage so I understand what you are saying. Chest infections galore and then CDiff probably caused by all the antibiotics. So far he has recovered each time, although clearly weakened. He was awarded CHC while last in hospital - but he has other health problems in addition to CBD so that probably bumped his score up on the assessment- and put onto palliative care. Still not quite sure what will mean going forward but for now it’s good to know that the palliative care team are there for him. Sometimes I think you just have to rant - I’ve done it with friends and then immediately apologised for burdening them. This group is great for ranting . And I think various feelings of guilt are inevitable - I keep telling myself not to beat myself up but I think it’s just a natural reaction when you want to do the best you can for someone you care deeply for. Keep strong

[MRSYafffle in reply to SunriseLegend]

Sending you both lots of love & strength on this horrid journey xx

[45purple]

Feel so sorry for you going through this with your mum. Karol had 5 aspirated pneumonia between Oct 23 to May24 when he passed. Had a peg a month before passing. We knew last lot of antibiotics weren’t working . Don’t be hard on yourself about decisions you make the carers role is sometimes as difficult as the illness. 💜

[MRSYafffle in reply to 45purple]

Sorry for your loss, at least at peace now, sending lots of love and healing hugs xxThe watching on and waiting is really difficult.

[Richard33]

MRSYafffle,

You have done so well. This has gone on so long for you . As you say, it is the cruellest of diseases. And you can be sure you will finally be awarded CHC when it is all too late....!

Love and support from all of us in this community.

Richard 🙂

[MRSYafffle]

Thankyou, it doesn't feel like it. Lots of love to you and yours xx

[LuisRodicioRodicio]

Dear MRSYafffle!

Very difficult and hard times. I send you my solidarity and a big hug.

Luis