View Full Version : Trying to get home

26th May 2015, 12:27
Hi everyone
it's been a while since I have posted. I'm looking for advice from you all about having adaptions done to the house to meet my needs. I can't walk anymore and have limited use of my arms and hands. I also need a care package.
Any info would be truly grateful

26th May 2015, 14:43
Hi Suzy that will all depend on your current property and circumstances.

My council OT gave a lot of advice. There are lots of options such as through floor lifts, using other rooms as a bedroom etc. but your OT will advise the best course of action.

I didn't qualify for funding so we knocked down our conservatory and built a bedroom.

Beyond that our social worker recco a care company who are excellent. She also did all the assessments for funding.

27th May 2015, 10:39
Contact MND connect and ask for advice and also look at the MND publications list - I think there is one on Disabled Facilities Grant (DFG)

27th May 2015, 10:57
Hi Suzy;

You really need help from a organization such as a hospice to help sort things out and so you get a complete as possible package.

Love Terry

27th May 2015, 14:41
Hi Suzy I'm sure you will receive good advice from this forum & your O.T. etc. My little advice is not to take anything a professional says as 'gospel'. Do what is right for you. My O.T. frowned upon me using a stand and turn favouring instead going straight to hoisting. My care agency disputed this advice, on my behalf. That was over 12 months ago and I'm still using the stand and turn. I appreciate all cases are different. This is what happened in my world.
Take care

29th May 2015, 12:37
Thankyou all for your support and take care

4th June 2015, 11:48
Hi Steve how often do your carers visit and do you need to be hoisted at All

4th June 2015, 12:25
hi suzy

i use a standing hoist but eventually will use a ceiling track hoist.

i get a 90min morning call to shower, dress, peg feed and meds. a 45min lunch call for more meds and a feed. finally a 1hr night call to put to bed and do night meds.

twice a week i have a 4hr sit in call, it helps take a bit of pressure off the wife and lets one or both of us go out.

4th June 2015, 12:57
Hi Steve do you fund this yourself and how many carers thanks steve

4th June 2015, 13:06
all calls are double handed so two carers at all times.

i don't contribute, we have chc funding, my social worker pushed for health funding.

i have my social worker and manager of the care company on email if i need them. i have 5 main carers who are always there as main carer, others can come as secondary to learn what to do.

4th June 2015, 13:07

Four visits a day here. 9am, high noon, 4pm and 10pm. I have a ceiling hoist in bedroom and living room. I always get hoisted now. I rotate the journey from hospital bed to mobile commode to my recliner twice a day - excepting when I detour slightly to the wet room.

Some visits involve a shower, brushing of teeth, shaving, but quite often I simply require a transfer. I always get my bum wiped when hoisted.

My care is funded by the council after means testing, but in Wales there is a 60 quid cap per week even if you must pay. Two carers each time as with Steve.

Regards Jock

4th June 2015, 15:05
Hi Suzy I got CHC courtesy of my angel of a social worker. I also have 2 ceiling hoists FOC, had them over 18 months but still able to use my stand & turn . I don't think MND 'sufferers' are means tested, but I stand to be corrected. I certainly was not asked any questions.
I live alone so have an overnight carer,second carer joins her to toilet, shower,shave & dress me. Then 11.30-12.30, 3.30-4.30 and then ca rer joins overnight carer at 7.00-8.00 to take me to bed, sit on bed until 10ish then buzz carer to tuck me in, no kiss Lol.
As you may be aware, I only have 'Ensure' 5 times a day, copious amount of tea & coffee and maybe a Walls magnum. I can still swallow meds. No feeding tube, can't walk or talk. Love Dude.

4th June 2015, 18:30
Hi Suzy Having just referred to th'internet I find I may have reached the criteria because I live alone, am over 65 and have a terminal illness. So maybe I didn't get a grilling. MNDA info sheet 22A may help you. Sorry if I misled you. Dude.

4th June 2015, 19:01
i wasn't means tested, i wouldn't have qualified if i was.

4th June 2015, 19:11
Hi Steve Thanks for rescuing me from a subject I obviously know nowt about. I do that a lot. Take care. Dude.

4th June 2015, 19:17
NHS continuing healthcare is free, unlike social and community care services provided by local authorities. You may be charged for these depending on your income and savings.



4th June 2015, 19:18
Hi Steve Thanks for rescuing me from a subject I obviously know nowt about. I do that a lot. Take care. Dude.

to be honest i had to double check. i have seen that many people.

5th June 2015, 08:37
I'm with community care services run by my county. The Social Worker pointed us in their direction. No complaints though.

8th June 2015, 11:56
I'm getting in touch with social worker today will let you know the outcome

8th June 2015, 12:29
Really hope you get what you want Suzy.

13th June 2015, 12:27
Sorry to be nosy jock but do you live alone

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