Parking bay

After several letters and photos, we have finally been allowed to have a parking bay outside.  This has made such a difference. We live on a busy road and opposite a large secondary school, so parking is impossible even at the weekends.  Transport usually have to park miles up the road and are far from happy when they come to pick mum up for her club or appointments.  But, yes you have guessed, it only took a day or two before people started parking in the space.  I completely understand it is not ‘ours’ as such and anyone with a blue badge can use it, as they should if it helps, but what about those who do not have a blue badge.

Sunday, I came out to find a large BMW pulling into the space.  I pointed out calmly that he was parking in a disabled bay and he immediately became angry, shouting that the bay was for anyone to use and that he had a blue badge.  Well display it then, I suggested. Of course, he didn’t have one, just the ‘clock’ part.  I said that if he had dropped his aunt off round the corner, as he claimed, then he would understand the difficulties faced by disabled people and would also be fully aware of the rules.  There were lots of spaces round the corner where he could still park and no parking restrictions.   He again argued that the bay was for anyone with a blue badge and it didn’t just belong to me and I totally agreed reminding him at the same time that he didn’t actually have one.  I could not believe his cheek.  He did finally move away once I started to take a photo of the car but I shouldn’t have the added stress of having to ask people who aren’t disabled to leave the space for those who are.  Then of course Monday morning we had all the parents stopping there.

No doubt people think it unfair that we should have a bay at all, but they really have no idea how much harder it is to get out of the house and in a car when you are disabled or in a wheelchair – lifting it up and down steps and kerbs, manoeuvring it through doorways and gates and around obstacles, trying to stop it running away from you whilst making sure you haven’t forgotten anything, or just pushing the thing.  Having a parking space near to hand is such a great help.  When non-disabled people park in it there is nothing you can do as it is just an advisory marking – how ridiculous is that?!  I could have just chalked something on the road myself if it means nothing.  If you are going to give someone the benefit of a parking bay, and recognise that there is a valid need, at least make it enforceable in some way?

Total waste

Wtf, not only did mum have to pay for a stairlift to be installed but now has to pay to have it taken out!  And no one wants it!  Its barely a year old and yet it is absolutely worthless.  I cant believe the wasteful way our country deals with mobility aids.  The NHS does not want used walking frames, handrails, commodes or stairlifts returned and they are all just thrown away.  I am going to have to scout around for a charity that might need them, but thought that was what I could do with the stairlift – more than happy to donate the thing, but instead we had to pay nearly £200 for someone to come and remove it.

The first company didn’t turn up as promised and the second said they would come in a few days but it took a fortnight and even then were a couple of hours late, having to come from the North of England.  It was then a very painful experience watching the guy trying to remove the thing.  Having taken it up to the top of the stairs, he then fiddled with various parts and it stopped working altogether.  I suggested it was because he had loosened the stop at the top, but he denied touching it.  About an hour later, he said ‘oh, its the stop at the top that’s stopping it move!’.  Nearly 5 hours later I finally helped him carry it over to his van.  I am sure he deserved the £200 for the time and effort, but doubt he will get much of it.  They claimed they would not refurbish it, hence the charge, but would dispose of it ethically, but as he sawed the rail in half he groaned that this one wouldn’t be refurbished so I wasn’t that impressed.  Anyway, it has finally gone and at least I was able to use some of the time to make a start on clearing out one of the rooms.

Why is nothing easy?

Too good to be true

Now we can’t afford the care!!  I can’t believe my bad luck.  The carers have had to be cut down to mornings only and a couple of lunch time visits from Monday!

We knew that once mum moves in with me her house would be considered an asset but we hoped the care costs would be based on her actual income and not what the Council assume it to be! We have put her house on the market straight away, but she doesn’t have that money yet – it is all just on paper!  Plus nothing is selling in this market and we can’t afford to do it up to rent it.

We hoped we could pay any additional monies owed after her house had been sold.  But no, now 12 weeks have passed she has to pay the full cost of her care and with four carers coming in a day it amounts to over £500 a month more than she actually gets!  So not only have we lost most of our privacy in our home, given up a room and now share most of our ground floor, including the kitchen and bathroom, with complete strangers, it appears that I now have to provide the bulk of her care and pay for the privilege!!  I thought it was all too good to be true!!!

We did ask the social worker about deferred payments and he said it was only for people who had savings of less than £20,000!  Well mum has absolutely NO savings! Then he kept on about what a good pension she must have! Yet another assumption!  It possibly was good 38 years ago, but it is pretty basic now.  I know I certainly couldn’t live on it.  Eventually it dawned on him that their financial assessment left no room for food or other daily living costs, so agreed to send me the forms, but on reading them I was shocked at the costs involved in arranging this.  Nearly £1500 to set up and then they charge you compound interest – interest is charged daily, so you are paying interest on interest – with no indication as to what that interest rate might be!  And do we really want to put yet another charge on her property whilst it is up for sale?  We don’t want to risk holding things up if we did get an offer.  Plus the Council already has charges over the property for the bathroom and the stairlift, with no indication as to what that interest rate is either – on top of which we have to pay for the stairlift to be removed (even charities don’t want it!) and, if we had to rent, to have the bathroom put back!

Anyway, irrespective of all of that, it seems we are not eligible for deferred payments anyway – they are only available to people if they go into residential care!!  So there seems to be no support when you move in with family – we are just expected to pick up all the bills!

So I am left with no choice but to cut the care costs down to the bare minimum and hope we can meet those costs.  The minimum call out in the mornings for personal care is an hour.  I have to have some lunchtimes as I am at work and of course she also has to pay for her club and the watch alarm. This doesn’t include the costs of her ‘personal’ items, additional laundry, additional heating, creams and lotions and medications etc etc.  So until the house is sold we are just accumulating debt alongside a lack of sleep (I already do the night time care) and trying to manage my own household commitments and go to work. And we are faced with university fees (no student loans for graduates at medical school), accommodation costs and living expenses for my son.  I feel I am getting hit at both ends.   How I wonder does anyone else cope.  I can’t help feeling like I have been mugged by the government!

And there is no consideration of  risk?!  We were told by the hospital that she had to have full time care but I can’t provide that as I work and now we can’t afford it!                                                                                                                                                                                               We can hopefully recover some of our costs from the house sale, but then we have to worry about any tax or inheritance tax (should there be any) or future care costs, whatever so you are expected to prove everything you spend.  When you take a parent into your home to live with you, they don’t tell you about any of this!  And did I really even have a choice – we were told there were no residential care homes in our borough and the Council couldn’t afford to pay for a non-discounted home outside the borough and she could not live on her own!  I could just put her back in her house, where she would get support but it is the night-times that would be the problem and the loneliness.  I think I should start booking my flight to Switzerland as I dread to think what the future holds for me and I definitely won’t be able to afford to ever pack up working.