View Full Version : why are things so complicated

15th October 2012, 20:16
well after hubby fell a few weeks ago after we had already requested a stairlift and it wasnt forthcoming ,after repeated requests and the mnda helping us ot finally gave the go ahead.i really cant understand why one person can affect your daily decisions.after the fall we immediately got a hospital bed and commode so ot was good and acted fast.but from the very beginning said be better to be downstairs.initially means tested and were supposed to get vertical lift and upstairs wet room.now only a small wet room downstairs and that could take months still.so we absolutely insisted we had the stairlift to have a shower and flush a toilet as i am no nurse and hubby having to use a commode downstairs in the dining room(bathroom is upstairs) for the last four weeks is unsanitary and undignified.i actually emailed my local mp who has kindly pased the buck to the local councillor.way to go mp!no surprise there then.apparently at the mo there is no money for dfg..i now sleep upstairs on my own as we cant fit 2 beds in the dining room and take a baby monitor upstairs.the worst thing about this disease besides the outcome is the constant battles to get what should be a basic right and waiting waiting waiting for people to get back to you and never do.still waiting for care package and getting family and neighbours to help get hubby in and out of bed.i am physically and emotionally exhausted and hubby just gets worse every day.cant treat bone cancer they reckon he has as well as his health is bad.today i have seriously cursed any supposed god out ther e.even stem cell is now out of the picture.oo sorry i have ranted a bit havent i but needed to get it off my chest.hope everyone else is having a better dayxx caroline

15th October 2012, 21:32
Sorry you are having such a rough time. I am a carer and diagnosis was 10 months ago. One thing I have learnt is that you do not wait fr people to get back to you. You pester them! Do you have an MND nurse? Do contact MNDA ad they have very good advice to follow. Wishing you all the strength and support you need.

15th October 2012, 21:42
Time is not on someone's time with MND why does it take so long to sort out basic things to enable families living with MND? I'm spending 25k on a single storey extension to save to local authority thousands in the future but can't get help with a stair lift because I've got money to spend on the extension I need to save falling. I was asked last week if I could sleep downstairs....uhhhh no my bathroom is upstairs with my toilet was my reply....so I explained spend a 1k on a stair lift or put to my badly needed extension! It's o.k, though I notice that Alzheimer's are running a national advert why can't the MND run such a campaign to highlight this cruel disease? Caz sorry your having such a bad time and I hope things get better for you and your family.

15th October 2012, 21:46
Hi Caroline;
Can’t agree more! I have a fairly slow form of Mnd and we are often struggling with the changing personal people not getting back and people passing things on or not. Some days, my wife spends vast chunks of the day on the phone trying to sort something out with little time for other things like looking after me and the house. It must be ten times worse for other people whose Mnd is quicker. I don’t know if Mnda connect would do any of the donkey work for us, I doubt it because of the logistics.
We will wake up and everything will be fine, Terry

15th October 2012, 22:21
Hi Caroline,

Not an ideal solution but if you google stirlift hire you can rent a lift. They say no minimum term and the only price I saw was 57 per month which I know if cash is tight is not easy but would mnda not help out or some other agency. It doesn't sound too much at 624 for a year and is certainly a lot less for society than time in care for your hubby and probably a lot less than your local mp's House of commons bar bill.


15th October 2012, 23:07
Hi Caroline,
Sorry to hear of the ongoing hardship for Rob and yourself, think depending where you live or who you have supporting you makes all the difference,in other words a bit of a lottery.for me five and half months DLA (at first thought good news not as ill as I was first told) my first award was zero.Today I had great news I recieved my blue badge which I applied for six months ago,was told by OT didnt need DLA to apply,the department phoned me after holding on to my application to say NO DLA no blue badge now if I had this information to begin with at least I would have saved everyones time.Have to say I was pleased to recieve the blue badge now have to fill forms in to request Job seekers allowance since my SSP has come to end it states I may be required to go for an assesment -you got laugh really these people should maybe put a few lines on our forum you know Things that put a smile on your face.


16th October 2012, 01:39
Things are complicated for a simple reason, the local authorities do not want to spend money on the likes of us. However the law states differently. It is high time for the MNDA to establish well defined legal benchmarks.

All MND spending is VAT free, and the rest is a loss offsetable against personal tax, back-dated(?).

16th October 2012, 16:30
hi roy robs ssp ends end nov so have been advised by community law to ask his employers, as he is still on the books, for form ssp1 and apply for esa .our hospice doc has given him a ds1500 so with this he automatically goes on to the support group and no need for interviews.they have told me to claim income support in my own right even though i will lose half my carers allowance and will get the princely sum of 26 a week but apparently this gives me more help.but with our very hardworking son at home it seems he will have to pay our council tax but if he was in prison we wouldnt have to pay a penny!sign of the times eh lol.bit better mood today.rob had a new mattress yesterday but the damned things so noisy.it sort of inflates and pumps air through but he wasnt too comfy last night but i said give it a week at least.wishing you all the best caroline and rob x

16th October 2012, 16:32
hi john mnda is helping with installation and and rental for first 3 months then we would pay 30 a month after that but i hope to get wetroom before then!thanks for your input. caroline x

16th October 2012, 16:43
hi scott ours is the same situation.only reason rob downstairs is because he fell in the bathroombut if wed had the stairlift wouldnt have happened.but now we are stuck with a commode.stairlift man came today as finally got go ahead from ot need an infill building then it can go in.hoorah lol.wed already put our son in the cellar a few weeks ago to empty the upstairs room which we were told would be the wetroom ! oo think my head is going to explode soon with all of the stress lol caroline x

16th October 2012, 19:48
Caroline, so sorry to hear that life is still so tough for you all. Makes me realise how lucky we are.

16th October 2012, 20:11

Mick found the air mattress a bit uncomfy so I put a sheepskin blanket on top of the mattress but under the bottom sheet and he is fine now, worth a try got the sheepskin cover from Tesco it wasn't too expensive. And to reduce the noise of the pump took it off the end of the bed and put it on the floor on top of a spare foam pillow xx Ang

19th October 2012, 18:44
thanks ang will try that tonight!we adjusted settings a bit and he had a better night just need to get pillows sorted.good news had stairlift put in wed and had first shower and proper toilet in a month.hurrah.cant get him up there on my own but son can help few times.had a hoist delivered yesterday and bed extension.also a commode shower chair but dont know how to adjust it cos the commode doesnt come to the edge of the chair so dont know how he can wee in it.also got carers coming in tonight so a really good week.love ,caroline

19th October 2012, 18:51
Hi Caroline,

great to hear some things going your and Robs way at last and may it continue.

best wishes.


bakeit Forum