Wanted to pop in to give an update.
So Mum has been in the hospice since 28th June. It hasn't been as I had imagined & I've had to make some complaints on the care she has been given. They don't have the staff or time that is required to feed etc. Myself and one of carers have had to do most of it. I brought in loads of info on how she is affected "all about me" but not acknowledged. It really has made a hard situation so much harder.
Mum got a UTi since being here so that has hampered assessments, antibiotics end today. She has deteriorated further since being here.
Her swallow is very poor and her intake dire. We have agreed today no artificial feeding if it becomes she can no longer swallow. For now we are to continue trying to encourage her to drink & eat. She has lost weight since being in and two stone since January.
She is being assessed on a daily basis on where we are at but it obviously is only going one way but they can't say how long is left just yet, just time is looking short.
She had put on an advanced care plan that she wanted to be at home but she has liked being here and is happy so if time is very limited she will remain in the hospice. She is oblivious really as to what is going on.
They are tweaking some meds this week to see if they can control her myclonic jerks and spasms better.
I've been through so many emotions. Even though I thought I had prepared myself for this situation arriving, I'm not prepared at all and still in limbo as she may or may not pick up a bit after UTI.
The not knowing are we definitely entering the dying phase is what killing me. 😭💔