Hi Folks, Thankfully my mother in laws PSP seems to have stabilised over the summer. Her speech is still very slurred, she is wheel chair bound, sleeps all day and in a hospital bed (which she hates) at night.
My father in law has been very lucky that the local health board supplies carers to come in four times a day to help with dressing, toileting and washing. However when they move her she falls at the drop of a hat, she can't stand but needs to in order for them to move her about. My father in law is worried she'll have another bad fall but the carers told him that they can't hold her (she is very overweight) and their training states that is a patient starts to fall they have to let them so they don't put themselves at risk. He is very frustrated at this and is asking why they even come to the house if they are just going to let her fall? I have tried to explain it is probably their health and safety training. They suggested a hoist to move her but the house really isn't big enough. Has anyone had experience of this with carers? Any suggestions would be very appreciated.
Thank you all
x
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Bubbles1
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Husband Franks is in care home, where the hoist is used for several of the patients. none of the residents seem uncomfortable or distressed whilst being in the hoist. The carers should have formal training in its use, it is not the prettiest piece of equipment but seems to do the job. Hope this helps.
In the UK it is possible for a PSP sufferer to be admitted to a neurological rehabilitation unit for a few weeks, for some intensive physiotherapy and occupational therapy. The goal is to give the patient the mobility skills to live at home as independently as possible, with the help of carers, utilising whatever level of mobility they still have to an optimum.
That is, the patient can be admitted from home for rehab without any critical event (eg stroke, fall) causing them to be admitted on an emergency basis.
My mother was admitted from home for this purpose earlier this year. She spent 6 weeks re-training, after a long period (two years) of being bed-bound. During her stay, she learnt how to transition from bed to chair, from chair to lavatory, from chair to bed with the help of carers, safely and without fear. She also learnt again to walk short distances, of course accompanied by carers.
She is now at home, and gets up each morning and is no longer bed-bound.
So my point is that it may be possible for your mother-in-law to have a similar stay in hospital, to develop some basic mobility skills that make her transitions and walking as safe as possible, within the constraints of her disability. She might develop both physical mobility and confidence, so that when she returns home she is able to make best use of whatever motor capability she has left.
My mother was also overweight on admittance and lost weight during her stay, which I think also helped her move more easily.
Most importantly, your mother-in-law's carers would also need to be trained by the physio team when she returned home, in the "best practice" transition techniques that were taught in the rehab unit.
My husband has 2 carers am and pm to help him up and then to go to bed and a carer 5hrs per day so i can go to work
he cant do anything himself but can just about stand with the 2 carers
we have a standing hoist which i can manage myself if i need to change him or to get him in his wheelchair if we go out as i now couldnt manage without it and we live in a small flat he has his own bedroom though
.he had rehab at home for a few weeks last year but afraid he didnt improve
it sounds as though you really need the carers to use a hoist
Hi - what a tough situation. The carers should be trained on how to "help" her fall safely but to their defense they have to make sure that they don't get hurt as well. With that said "spahegetti legs" are common with PSP but medication can also make this worse. I would be interested in knowing what medication she is using. Also -the way carers are trained to transfer people does not work for PSP people. Another consideration is that maybe she is at a stage where she can no longer support her weight so a hoyer lift may be in order - for everyone's safety. In my experience -there were times that my dad's legs would just buckle and is ability to support his weight was by the given day and my father had maintained his weight his whole life (5'6" 135pds) and then lost weight with PSP and still couldn't support his weight. So sometimes this is a PSP thing not just a weight thing but the heavier the person is with PSP the harder - the stiffness can make them feel like "dead weight" and heavier then they actually are. I echo the need for a hoyer lift.
get in touch with the OT as soon as possible to explain .
my husband and I DUG IN for far too long trying to cope .
The OT tried. Stand lift m then a hoyer lift . These were not suitable for with John or myself to push around especially on carpet .
we now have portable ceiling house . they are brilliant . I am 78 and I use them daily without any problem . in fact it would have been impossible for me to still be able to keep him him with me .
we have one over the bed another over his armchair . alright it's a bit of an eyesore in the beginning but you soon get used to them and they fade in the background .
we did have to get rid of some of our furniture .My husband sleep in a hospital bed downdstairs which was the dining room .
we are still together and that's what we both want . I do have carers morning and. Igot
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