I'm just being pathetic, feel free to ignore me, but I feel really lost at the moment. I have no idea who is supposed to be helping support me. But nothing much is happening and I'm scared.
- DS1500 provided 3rd December with urgent referral to council adaptations team, social services (again), OT's, wheelchair services.
- Been requesting care assessment since mid 2021 (finally done in Feb 2022), 35 hours awarded. Not a single hour provided.
- Hubby chased daily and got my powerchair February 2022 (I was no longer safe walking)
- Released from hospice stay Feb 2022 with assurances of carers, adaptations, urgent and continued support. Just got endless appointments and phone calls etc.
But NOTHING has happened. Apart from my powerchair, a temporary ramp that has to be lifted each time and a grab rail on my bed....
No carers, no adaptations, no answers to massive list of questions for an OT (I've given up now), no aids around the house that we haven't found out about and purchased ourselves (mainly thanks to advice and info on here).
Lots of people visited or phoned in January, made promises.... then NOTHING happens.
I am so worried about the adaptations the council are suggesting (they don't seem right) and I have to pay a massive chunk.
I can't sit or sleep comfortably. I can't do anything independently and I can't even make or move a drink whilst in a powerchair. Loads of simple things.
My husband works full time (runs the house and children now too). How on earth am I supposed to manage? I can't even leave my own house without help as the 7ft portable ramp needs my husband to place it (assuming he is here).
Why does no one tell you that you get left to muddle through? What am I missing? Should it be this hard? Am I doing something wrong? Expecting too much?
I am doubtful I will have a PEG now, because who will look after me/ it?
Is everyone also finding things this hard to navigate? I have poor speech, I can't walk any more, my left hand and arm is about 40% functional and my right about 80%
I'm trying to stay positive but every now and again I get really scared. I'm exhausted and waiting for someone to come and take over, so I can live my life...
Just send me a hug xx
- DS1500 provided 3rd December with urgent referral to council adaptations team, social services (again), OT's, wheelchair services.
- Been requesting care assessment since mid 2021 (finally done in Feb 2022), 35 hours awarded. Not a single hour provided.
- Hubby chased daily and got my powerchair February 2022 (I was no longer safe walking)
- Released from hospice stay Feb 2022 with assurances of carers, adaptations, urgent and continued support. Just got endless appointments and phone calls etc.
But NOTHING has happened. Apart from my powerchair, a temporary ramp that has to be lifted each time and a grab rail on my bed....
No carers, no adaptations, no answers to massive list of questions for an OT (I've given up now), no aids around the house that we haven't found out about and purchased ourselves (mainly thanks to advice and info on here).
Lots of people visited or phoned in January, made promises.... then NOTHING happens.
I am so worried about the adaptations the council are suggesting (they don't seem right) and I have to pay a massive chunk.
I can't sit or sleep comfortably. I can't do anything independently and I can't even make or move a drink whilst in a powerchair. Loads of simple things.
My husband works full time (runs the house and children now too). How on earth am I supposed to manage? I can't even leave my own house without help as the 7ft portable ramp needs my husband to place it (assuming he is here).
Why does no one tell you that you get left to muddle through? What am I missing? Should it be this hard? Am I doing something wrong? Expecting too much?
I am doubtful I will have a PEG now, because who will look after me/ it?
Is everyone also finding things this hard to navigate? I have poor speech, I can't walk any more, my left hand and arm is about 40% functional and my right about 80%
I'm trying to stay positive but every now and again I get really scared. I'm exhausted and waiting for someone to come and take over, so I can live my life...
Just send me a hug xx
Comment