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.

Playing up

I suppose it was a bit ambitious thinking I could go away for 5 weeks and not have any problems, but I had planned this trip before mum had her stroke and I thought it would have been more of a nightmare trying to change it.  My 23 year old son amazingly offered to oversee her care while I was away, give her an evening meal and help her to bed.  The carers were still coming in 4 times during the day, so it should run smoothly, or so I thought.

What did mum do?  She rang a bell (for night time emergencies) literally every 5 minutes, and was constantly demanding.  I think she thought my son was there to cater for her every need, with 24 hours constant care!  She would put the tv on really loudly to get attention, throw everything on the floor, deliberately wet herself and even wrote on the wall!!!  Not once did she say thank you to him and would just point to what she wanted.  She was also rude to a friend who was staying with us, who was kindly popping in to chat and take her cups of tea or the occasional meal if mum was hungry.  She told her she was fat 4 times and that she had never had a ‘real’ job (she was a PhD student!). Mum couldn’t understand why they stopped going in to talk to her.  I could say she was overly anxious and didn’t know what she was doing, but she has admitted to me in the past that she does know.

This isn’t dementia or a consequence of growing old, it is her personality sadly.  She can be very nice to others who are not close, although she has admitted to saying unkind things to friends on occasion.  Every few years my brother goes through a period of refusing to talk to her, but I try to convince myself that it is because of her own background/childhood and her general bitterness about life.  Her life wasn’t horrendous but it was tough and experiences can effect how we develop as a person.  Or is there really no excuse for being rude?

It was also a lesson in who will actually help when they say they will.  One day my son needed to see a friend which involved an overnight stay, but people who said they would help now wouldn’t, so it cost me £200 for an agency carer.  I felt he deserved the night off, bearing in mind if he had managed to go out in the evening, he would get a cab back at 10.00pm to help her to bed, as she wouldn’t go to bed any earlier.

Either way, I did get away and I will be forever grateful to my son and our friend who made this possible, but I don’t think I will ever go away for so long again – and I don’t think they would be so quick to offer if they had any sense….

Silent care

Having finally found a reliable Care Agency, I am still so dismayed at the actual care system.  They are all (well mostly) lovely ladies and come in smiling and actually turn up on time.  They are usually very efficient, speedy and do all they need to do, but they just don’t talk.  I can understand why my mum feels so isolated and lonely.

The carer arrives, says hello, goes about her business with a flurry, then departs.  Absolutely no communication in the meantime, unless they are talking to someone on their phone.  So the elderly person just sits there all day on their own virtually isolated from the rest of the world.  Yes their needs may be met, if they are lucky, but a few minutes talking about their day, the weather outside or even asking how they are would go such a long, long way.

Age UK provide a befriending service.  We did try it a couple of times and it was really good, but the people tend not to stay around.

Again, having mum come to live with me has brought home the harsh reality of actually living on your own when you are housebound – just sitting in front of the tv all day and having no friends still alive or anyone to chat to. The evenings are the worse.

My mum is lucky in that she does have one friend who pops in once a week and her sister visits, plus me now, but what about all those other people who don’t have this.  There was a ‘running group’ I heard about once, where runners would pop into an elderly neighbour on their route.  I don’t know whatever happened to that, and I can imagine there are privacy/security/safeguarding and all sorts of other issues to consider, but honestly if you live next to an elderly neighbour, I cant stress enough the importance of actually popping in if only once a week to just have a quick chat. Just do it.

Alive and kicking (almost)

Well mum survived the night and actually slept really well, but she has now got into the habit of calling me about 7am for a cup of tea!  She is also complaining that I am not a happy bunny when she calls me in the middle of the night!  Well that is probably because I am still half asleep!  She complained I am like the carers who were in the home as they would just come in and say ‘what do you want?’  It is completely different – they are paid to smile, I’m not!

I must admit I have been getting slightly ratty, but that was because I couldn’t help her.  Nothing I seemed to do reduced her sickness or pain, but apparently I should have just come in and given her a hug! As if that would have worked when she was writhing with pain.  Anyway, these things go two ways!

Everything is so one-sided.  She rarely says thank you, expects me to be there constantly at her beck and call, turning on the light, passing her glasses, picking up something she has dropped, getting her a drink or food – this is on top of the assistance in getting her on and off the commode or cooking her meals etc.  It is relentless and generally unappreciated.  I promised myself that I wouldn’t turn this blog into a complaint but…

 

Bad week

It has been a week of pain and vomiting and complaints and I have not been able to resolve anything.

It started with mum throwing up on the transport on the way home from her day centre. Not unusual.  This was Tuesday.  She got some opiod patches from the GP on Wednesday for the pain and was fine, but the following day threw up on the transport home. We put it down to the heat and travel sickness, but she continued to feel ill on Friday and vomited again in the evening.  So now I didn’t know if it was the medication!

I tried taking one of the patches off (the GP said we could use two if necessary) but had to put it back on again in the end (with the help of some surgical tape) as she complained the pain was too bad.  The pain eventually did subside, but mum was not happy as I was reluctant to give her anything else for the pain.

Now she feels dizzy as well as sick, but at least the vomiting appears to have stopped.

 

The whole week has been a strain.  She clearly doesn’t know where to put herself and is no doubt getting anxious as I am going away in a couple of weeks.  She has been calling me in the night, complaining that none of the buzzers or phone works, called the watch alarm people out because the carer was a bit late and has been generally unhappy.  She said she doesn’t want to be a nuisance but wants someone with her all the time, which just isn’t possible.  Even in the Residential Home that didn’t happen, though she now thinks that was wonderful – short memory!  I can’t do any more than I am.  In the end, I gave in and gave her two paracetamol, two phenergan (for the sickness) and two senna tablets (for the constipation) on top of her medication last night and she seemed to have slept through – unless she has died…..I am too frightened to look!  Or I just didn’t hear her from exhaustion…I will find out in a minute 😦