Today I saw my first carer at 2pm. A hugely overweight and smelly woman who tried to tell me someone had knocked at ten this morning. I have been up and alert since 8am and no one knocked. I don't know how much longer I will be here to be honest.
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Sorry to hear that you had a bad experience with your carer - I am sure there are some good ones out there. -
Sounds appalling....complain complain complain....don't give up....you'll soon be in your new placeπ€Originally posted by matthew55 View PostInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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So sorry for your bad experience today matthew55 . Life is hard enough without problems like this but hopefully it will be easier for you in your new home. I would do as Linda suggests and complain xxxππ€π€
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See what happens tomorrow.How often each day should carer call.2pm for first call of day sounds late especially if you need help to wash and dress.
Do you have a key safe?So if carer knocks and no answer they can gain access.
Or maybe they could put a note through your door if they couldnβt gain access.
Could they ring to say they are at the door?
You could have been on the floor for 4 hours with no help arriving..really not good enough.
Hope things get better with the carers ..if not as Linda said COMPLAIN as you are vulnerable.
My kids bought us a ring doorbell so I can see on camera who has been to my front door.
Best wishes
Mary
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Got a meeting coming up with the agency boss and her boss. My good friend Karen will be there too.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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matthew55 Oh good.
From what I've learned in dealing with care providers: Document everything, have a clear idea of the outcome you want and Karen can take notes ππ Let them do the talking at first, see what they have to say...
Best of luck, be politely firm, be strong πͺ πβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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A note of caution when complaining: Some agencies are looking to drop clients, as they have few staff.Copyright GrahamComment
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In this case it's the Agency management that could loose their jobs.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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im not sure why they call it carewhen i can think of something profound i will update this.Comment
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It's a mystery, oh it's a mystery! π€πππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Matthew getting a key safe is good on several points, 20 quid screwfix just need someone to put it up for you, when we started with the care alarm package it was compulsory although we already had one at that point
They'd have no excuse thenHusband Albert diagnosed PMA Feb 21Comment
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