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Kate
30th January 2013, 16:20
Hi all
We have had a poo few weeks. I have been off work looking after both Mum & Dad as he has his health problems also, cant complain as working in the NHS has allowed me the luxury of full pay whilst I have been off. I will have to return to work in a few weeks time due to finances but its breaking my heart as they need my help more than ever. Loads of family arguments as they really do need extra care accomodation as the house is now to big for them but my dad is still denying mums mnd will get any worse and when I read some of the posts on the forum of how some people are having to manage I know there are some tough times ahead of us.
We have had problems with Social Services regarding installing a wet room which they have changed their mind about on a few occasions in favour of a through floor lift (in a 2 bed terrace)! We are just so fed up and all I want to do is look after my mum, Thanks for letting me rant I hate this bloody disease and what it does to people.
Kate xxx

Rory
30th January 2013, 18:48
Kate
Sorry to learn of your dilemma . As you say this is a cruel disease - everyone is different and the symptoms are different and the progressions vary. Your mum and dad are lucky to have such a caring daughter.
I am a bulbar palsy MND 'member' and have been for 3 years . I remember the day I was diagnosed and there didn't seem any point in denial - just uncertainty and the need to adjust and start planning ahead with my inspirational wife. It seems as if you are fighting the denial of your dad but I am sure if he sees the progression of the disease in your mum by whatever measure, he will appreciate that adjustments in planning need to be made. I can feel your frustration in you are trying to plan ahead with alterations to the house at the same time which has its own disappointments.
I know it is easy to stay , but stay positive and have some time to yourself. I hope you can have the NHS medical team and care around you all to help ease the burden .
I am not sure what the rationale is behind the loft as opposed to a wet room ? I hope that gets resolved for you.
Use the experience of the MNDA Connect and forum members as often as needed
Tomorrow will be better !

Take care

Rory

poz
2nd February 2013, 22:01
good luck with the wet room/lift work. it will make life so much easier :)
my mam had a downstairs loo built which eased much of the burden once she was
confined to the downstairs rooms. if we had had the option of a lift we would have jumped
at the chance (room size allowing) we found with the new loo, its too small to turn her wheelchair
around in, and she has problems reversing now her arms are becoming weaker.
keep smiling and try not to worry too much x

Kate
11th February 2013, 15:21
Thanks all for your replies. The lift is a deffo no no as there is just not the room. Since the post Social Services have now said they can have a wet room downstairs which will make a huge difference. This illness is marching on now and we really need to be a little more proactive than we have been up to now.
Take Care you guys
Love Kate xxx

caz
11th February 2013, 17:24
hi kate you have to keep on their back every week.we started the process last may and by oct had to involve mps councillors etc.it is now feb and have only just had 3 builders quotes.rob has been downstairs in hospital bed since last sept and using a commode as cannot get upstairs..disgracefu in this day and i told them.the shocking thing was the timeline from visit of ot regional social services said go ahead to councilit was nearly 10 weeks !!that was august and then we still didnt here anything until i got in touch in oct.please push push push until they are sick of you..we have been means tested three times now ,they just draw it out as long as they can but i am learning very quickly to stand up and say not acceptable and getting my local councillor on their backs. love caroline xx

Rory
11th February 2013, 19:08
Good on you Caroline - well done , and good news for you Kate at long last.
It pays to plan ahead, but we patients can be good at procrastination if we want ! (so I am told )

Best wishes

Rory

Kate
12th February 2013, 15:24
Hello my lovelys
Thanks everso for all your posts and support and yes Carolyne well done you, I never relised that this would be such a battle, its a disgrace really. We are still searching for more suitable accomodation as I think the bed downstairs conversation has run its course but you know what she has MND and although we have to be practacle she still needs some slack cutting. I fear she is giving up.
Love to you all
Katexxxx

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