Is there any awareness course for carers re mnd? Dietary needs, physically moving patient, toilet needs washing needs and whatever other people have found helps them.
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Stevedp Hi I am unaware of any awareness courses for carers. I am a carer for my husband. When I have had concerns re any issues I usually contact the appropriate medical professionals that we were referred to at diagnosis.
Personally Occupational therapist are the best as they can advise on most care needs off people. They can advise on risks re lifting and all other personal care. They will also refer to other agencies like dieticians, speech and language team.
I hope you have support and aware of your MND team. No one should be looking after someone with no help or advice on how to look after their family.
Hope that helps and I hope your not struggling on you own. Ask for help.xx -
Stevedp Trouble is that what works for you Steve won't necessarily work for another person at the same general stage, such are the nuances of this condition, so a generic 'How To' manual isn't of much use really.
This is from the MNDA website Information for care workers but I don't know if they go into detail re actual tasks.
An OT can give you tips on manual handling, transferring etc. An SLT can give you tips on eating and drinking.
Most practical knowledge is gained through just figuring out what works and what doesn't work. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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No one showed me what to do. No training just figured it out for myself. What might work with OT instructions doesn't always work in practice. The way I was taught to lift my husband would probably ended up with me having problems. We just figured it out. In hospital and hes been told (by dietician who doesn't know him) a soft diet which is annoying as he can eat anything including toast. You've just got to be sensible. Ask questions but tailor it to suit you and your carer. Not many know about MND, which doesn't help, and everyone's MND is different.when i can think of something profound i will update this.Comment
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This is a link to information provided by the Carers Trust. I’ve not yet tried any of these courses, but it’s something I intend to do. I too have had to figure things out for myself as I’ve not found our support professionals terribly helpful. Now we have carers, I’ve picked up useful tips from them. But on the whole I think we are left to look after our loved ones without any training whatsoever.
From a purely personal point of view, I think it’s a good idea to stretch myself mentally, so at the moment I am doing a Spanish course. I do a little every day after my husband has gone to bed.
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Oops! No idea why the second link came from!Comment
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I know Princess Polly, no one expects it!
Good luck with the Spanish!
Love and hugs xxxxComment
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My app is nearly done Denise!
Soon you'll be able to do videos of the tasks that need doing. Simplez...
The Return of the Pink Panther 1975 - Hotel Cleaner including light bulb scene - YouTube
Love and hugs xxxxComment
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Graham I dont believe it!!! Good for you.
Loved the Spanish inquisition and I agree with the soft chair. Been using Stephen's and I've got back ache and hip ache so the torture is there just well hidden.
As for the pink panther. I must be related to him. I continually have problems unvacumming the rugs because they are sucked up so strongly even standing on them and pulling them doesn't set them free. My cats run for their lives. Light bulbs are my down fall never figure out if they are screw in or baton so trying to get them out is a nightmare especially if standing on the bed. Then of course trying to push a new one back in not knowing if the light switch is on or off and being blinded because it was on. Then catching it before it hits the floor because it wasn't quite in.
Could have done with the app a lot earlier. Surprising how Stephen has survived my administrations though saying that hes in hospital 😳
Love and snuggles xxxwhen i can think of something profound i will update this.Comment
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I share the frustration and anger Denise. You have done exceptionally well for Stephen and as we know we get very little meaningful assistance that the care app would provide.
Shockingly I am having to fight for the company's survival against predators looking to profit from my disability. As always the courts are just as ignorant and I am having to appeal. I'm coming to the view that people get what they deserve, which in many cases is nothing at all.
So sorry that it was not available in time for Stephen.
Love and hugs xxxxxComment
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Graham thanks for your kind words. Think that's all we can do is our best.
A lot of information seems to be from word of mouth. Think that's what got to me about caring for carers and their lack of support for carers once they are no longer caring. That's where people find out where, when and how. We have mnd support groups and I know there are ftd support groups but theres a lot of carers who have nothing apart from the (think caring for carers is local government run) so when they lose that they have nothing.
I can believe it that they are coming after your app. You keep on fighting.
Snugs and kisses
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when i can think of something profound i will update this.Comment
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