Feeling numb: Hi all Wanted to pop in to... - PSP Association

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Feeling numb


Hi all

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. 😭💔

17 Replies

So sorry that hear that you are going through such a hard time. I hope for your sake she is able to pick up enough to show you she knows you care. Such an awful awful illness and so devastating for the patient and those that love them. Big hugs to you


It is so stressful to not really know how it will play out. So many mixed emotions.


It sounds overwhelming. It's amazing that in these supposedly civilized countries a person can be in the hospital but given enough care. Hugs to you.

I’m so sorry to read this Spiralsparkle

Hugest hugs to you at this terribly stressful time x

Ugh ugh ugh...so draining - so exhausting - you're in limbo... Big hugs to you Spiral: one way or another it sounds like you are close to the end. Enjoy those final hugs and kisses with your darling mum.


Anne G.

Oh dear another sad time, at least she enjoys being there, hopefully after the uti she will pick up , sending you a big hug xxxx

So hard for all of us. Hugs and prayers for you and your mom. Nancyxx

Thinking of you, Spiralsparkle. We are never ready.

Hug from Jean xx

A big hug.


Hugs to you SpiralSparkle.

It all sounds very distressing.

We're all here for you.


Thinking of you in this difficult time.


Hugs to you 🌷

Hi Spiralsparkle

I am so sorry It must be so hard watching this happen to your dear mum after you have worked so hard caring for her and keeping her safe.

I hope you have family or friends with you offering you support and watching over you

You must be absolutely exhausted .

Your mum will know you are there with her I am sure.

I will be thinking of you both x

It's hard to watch and feel so helpless as they fade, it's also difficult when you feel that staff aren't quite in tune with her needs. All you want is the best for your beloved Mum.

Sending a big hug

Kate xxx

Praying that both of you may stay peaceful.


Thinking of you and your mum xx

Thinking of you both and wishing you strength and your Mum peace. Ruth x

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