I'm a specialist visit. I get two new starters. If I wasn't laughing I'd cry. ๐ญ
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Good grief
They are struggling for staff but still. As a nurse I would be horrified, as a carer it is horrible for them too.
Had a 4 week gap in hospice respite visits and no call to say why.
When I asked, more visits required and less staff, a few have left for nursing training. But still a phone call would have been nice.
matthew55 hope you survived it.Donna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
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Originally posted by matthew55 View PostI'm a specialist visit. I get two new starters.
None had preconceptions about how things should be done, all were mouldable blank canvasses - I would take common sense over experience anyday, having seen first hand how true "you can't teach old dogs new tricks" is...
Hope your newbies have bucket loads of common sense ๐ค๐ค๐ค๐ค๐๐โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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Iโve had new carers for a week but just donโt seem to be experienced in patient handling. Twice yesterday they put my toileting sling on upside down, fortunately realising before lifting ๐ฅด, never seem to get the other sling correctly positioned, never seem to get my garments pulled up comfortably, so many jobs unfinished. They mean well so I feel awkward but weโre going to have to look at another agency ๐
.Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Originally posted by Nettie View PostMy permanent carers start on Monday, hope they are as nice as the emergency team we have just had theyโve been brilliant
โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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Originally posted by Rosemary6NT View Postweโre going to have to look at another agency
Hope you get sorted very soon ๐ค๐ค๐คโDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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Matthew, hope they are lovely and mouldable .
Janette, fingers crossed for your carers.
I have just been told 8 out of 9 agencies approached can't offer me anything, only Home Instead yet to respond. Did I remember one of you had this agency?? xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Originally posted by Heather R View Post... only Home Instead yet to respond. Did I remember one of you had this agency??
Like many care agencies, they operate as a franchise, so their standards may not be equal accross different areas, but you can check out your local Home Instead office on the CQC website.
8 out of 9 so far can offer nothing ๐ฑ๐ฑ๐ฑ๐โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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I'm following this with interest as I embark on this journey.
โ
Heather R
I'm having a similar experience with getting care. After lying to myself that I didn't need it, I took Ellie 's advice (thank you) and put on my big girl pants and asked for help. Since then (end of December) they have been unable to find any care. Today I had a phone call to say they have found an agency with a vacancy....it was the 31st one they had rung! I think I may have lost the will to live if I'd had to make all those calls.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive ๐บ.
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Originally posted by Tabbycat View PostI had a phone call to say they have found an agency with a vacancy....it was the 31st one they had rung!
Glad your magic pants worked ๐๐
No harm in writing down what you expect, need and want the carers to do before they start with you, if there are tasks they won't do or conditions they impose on you which are unworkable, now is the time to find out.
Let's hope the carers are good ๐ค๐ค Notwithstanding the difficulty in carer availability, you don't have to put up with substandard care.
Best of luck ๐
โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โ
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I am following this with interest.
I have had to admit that I know need help in looking after my husband, he is 5ft 11 and I am 5ft 2 and transfers have become difficult because I haven't got enough hands and arms to position his limbs and stop him leaning one way or another. We currently use a MOLIFT but have a hoist on order (not a moment too soon)
We have been managing with 2 x 30 minute carer visits but have just been approved for 42 hrs a week and are embarking on employing a PA ourself via direct payments route. A number of agencies have already turned us down as "too complex" to cover the period until (if) we manage to recruit. I have been told to prepare for great difficulties in finding someone.
I can see the benefit of Ellie comment re moulding your own and have said that the right attitude and common sense is more important than experience of MND in a carer.
We shall see.......Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22
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