Oh Dear it just never stops!! One problem on top of another :-(

I had the Social services lady here today to see if all the things she put in place happened. Well not a lot of help realy...they put in a grab rail and a step on our front door but I need to hold onto my other half and use my stick so cant use the grab rail. My muscles are so bad I cant use them anyway.

While she was here she asked if OT had been ? NO then asked if Physio had been ?..er NO and has anyone been to see you about getting help with your bathroom ...er NO!

The problem we have is I cannot climb over the bath,and we spent all our savings on my chair lift. So I asked her how long before they will help me....and she said 6 to 18 months from your assesment...we havent even got an assesment yet. ;-( and she said well they won't do anything for 6 months at the least!

I wondered if anyone on here has had a shower put in by a specific firm or what type others have as we will have to take out a loan to do it ourselves.

I told her we have asked before I was this bad and they said I can mannage with help from my OH,and if not have a strip or blanket bath ! I then told the lady it is horrid not being able to shower every day,and I can only get to the Spa when I am well enough. I used to have a shower at the spa then swim then shower,and I did this everyday ,up to this last year....now I cant even do that ! :-(

Today I was worse than last time she called 3 weeks ago,I just seem to be getting worse every day,the nurse yesterday said, some people have a nervous breakdown and others have a phsical breakdown or both, under the stress you have been through in the last 15 years! and she thinks I have had a physical breakdown,I suppose I should be grateful I never had a nervous breakdown too.

I just wish I could see a chink of light at the end of the tunnel,every day brings new things.

Today we were told my OH has to go into hospital on 17th of dec and he will have to rest his arm for 4 weeks....and I have to go into hospital poss; same time but different town for a bowel OP,no wonder I feel so low!

Sorry went on a bit but no one here to talk to about all this !

<3 and Gentle hugs to you all and thanks for taking the time to read this x x

8 Replies

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  • hi rainbowdancer is there no way you can both be in the hospital ? how are they expecting you to manage when you are struggling with things already ? there used to be halfway houses you could go to and be helped til you were fit to go home not sure if these still exist.

    It really is such a frustrating illness and as you say no cink of light at the end of the tunnel.

    sorry i can't be more help but i just wanted you to know i am here and sending you hugs

  • I am in the same boat as you with the bathroom for our daughter. Whilst I would love a bath I could walk into, she won't have it, she refuses to be labelled by her illness. But we got a call about arranging an assessment, no idea when it will happne though. I hope things start happening for you soon. And IJ is right, how can you both be in hospital the same time. You won't be bale to help each other at all. Like you things for me are getting worse, but never expect any different so I start each day by saying 'okay fibro, let's see what's in your box of tricks today' and I take it from there. xxxxx

  • Hi rainbowdancer, I had an over bath shower fitted this year with help from an OT. They also fitted grab rails in the bathroom and an door entry system as my flat is on the first floor but self contained. I was finding it difficult to go up and down the stairs to answer the door and by the time I got there the caller had gone thinking there was no-one home!!

    The shower and grab rails were fitted by a local company that my local council use. Perhaps you could contact your local council and see if they can help you. I got a grant to pay for the work so there may be a way of applying yourself to get the same. There's no harm in asking :)

  • Hello Rainbow, so sorry to hear about all of this! My goodness, it never rains but it pours sometimes!

    You might be eligible for a Disabled Facilities Grant to make adaptations to your home. You can apply for this through your local council. From what I have read it is means tested, so anyone earning who lives at your home and any savings you may have will all be taken into account. Depending on your household income you may be required to contribute towards the cost of the adaptations which is a big consideration as to whether you could afford this or not.

    Your local council would have to approve your eligibility of course and if the work to be done would not only meet your needs but is reasonable bearing in mind the age and condition of the property etc. To apply contact the Housing or Environmental Health Department of your local council and ask them to send you an application form.

    For more info on the above, please click on the link which will take you to the gov.uk website -

    gov.uk/disabled-facilities-...

    I hope this helps! Wishing you all the best.

    (((hug))) xxx

    Libs

  • Thanks LIb we have had Social services in and the OT is due to come and do an assesment,but the SS person said even if they do a grant it will not be quick it will be between 6 and 12 months or longer. That is why we are going to try to get it done ourselves.

    I am a bit unsure to say the least because 2 years ago we got a firm in to build an extention on the back of our house for an annex for my Mother,a bedroom sitting room gally kitchen and wet room. To cut a long story short they were cowboys and the council made us pull it all down ,and we had paid £10,000 to them bit by bit in advance,and never got a penny back. We still had to pay another firm £5,000 to make the garage convertion into a bed sit and a toilet. The firm we used for the building came with good ref: but that can be done by anyone.

    We will see if I can ask around and get word of mouth recomendation.

    Thanks again x

    ((((((((((((((((((((((Hugs )))))))))))))))) to you x

    Rainbow x xx

  • I also have problems with using the bathroom but when OT came out they decided that as I live in an upstairs flat and have problems with the stairs too, it would be better if I moved to ground floor accommodation before dealing with bathroom issues, so I was put on my local council waiting list - back in Feb 1998 - I'm still waiting! In 2004 I had a bad fall in my bathroom that made everything worse. OT came back out and fitted a handrail over the bath which is of limited use as its on the left hand side which is my weakest arm.

    I'm not going to write anymore because its something I get easily upset by, but I really hope that you have much better luck xxx

  • My one piece of advice is to use a local plumber for any adaptations you pay for yourself. They could remove your bath, fit a low sill large shower tray with a screen on one side leaving the other side open for anyone to walk into. They could also install grab rails and a fold down seat attached to the wall. Plus the shower od course. I think it would be worth you getting in some quotes for this if nothing else.....at least you would know what expense you are looking at. I would have thought if both you and hubby are having ops that the hospital would send either social services or occupational help to see you prior to discharging you from hospital. Make sure they your surgeon is aware of what's happening...and your named nurse on the ward. Have you tried the British red cross? The advice re the plumber comes after spending £5.500 on the above, and the shower was useless. A local plumber said he could have done the job doe half the price! So don't use these specialist bathroom people you see advertised.

  • I waited 3 years to have my wet room fitted by the council so if you can afford it yourself would be done much quicker. I know that was the average wait in my area.

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