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.

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 😦

 

Practicalities

A good friend reminded me today about insurance!  Having a keysafe and carers coming in and out of the house might invalidate my present house contents cover!!

Immediately I got home from work, I rang the Insurance company to check my policy. The lady who answered the phone was extremely helpful and understanding and confirmed that they would cover me at no extra charge.  However, she then proceeded to tell me that I actually didn’t have contents cover with them, only buildings insurance!  Could I remember who does cover my contents – not a chance!  So embarrassing!

I did eventually remember, but will have to phone tomorrow now.  Hopefully they will be just as helpful, but if not at least I know who to change to now.  And an important lesson – to be better organised!!!

Honeymoon is over

I just get pointing now.  Get me this or that. Put that there.  Had my hair cut and got told I look like Camilla Parker Bowles!  I had to tell her she would be out on her ear if she continued and fortunately that brought a laugh.  Not quite killed each other yet.

Carers have been coming, but times are bad.  Late twice on the days mum goes to her club, so I have had to run back from work to wash and dress her and do all the other things that you need to do in the morning.  I am a wreck.  Carer turned up just as I had finished and just before the transport arrived.  Then lunch is getting later at 1.30pm, followed by tea at 4.00pm, then bed at 6.00pm – sounds familiar??  Have had a chat with the Agency and hopefully they will sort it out…..

 

Fresh start

Well we finally have a new Agency and they have been fantastic.  The carers have all been much younger and enthusiastic.  They all say they love their job and they all turn up.  The office even answer the phone when you ring them.  All a bit too good to be true, you must be thinking – yes well you are right in a way.

The first few days were perfect, but then it all started falling apart.  One carer tried to clean my mother’s personal areas with a multi surface disinfectant wipe!!  No carer seems to come twice (though that should change) so I have to repeatedly tell them where things are.  Most don’t have the key safe number and now the timekeeping is deteriorating.  Twice this week they have arrived too late in the morning and I have had to do the strip wash etc, otherwise she would have missed her day centre.  Then one day we had 3 carers in 4.5 hours!

But on the positive side, they do at least turn up, they are all very sweet and caring and the office staff actually answer the phone, so we can’t have everything.  I have hope though that they will sort it out eventually but mum is not so confident.  She rang them 4 times yesterday to complain and I bet they were regretting ever giving her their number!

Broken promises

Well another day off work as I waited for mum to arrive.  The transport was booked for 11.00am, but instead she didn’t arrive home until just past 4.00pm!   By which time the driver couldn’t park and I had to collect her from down the road and push her in the wheelchair back to the house with her bag and a walking frame precariously balanced over the arms.  Not quite the welcome I had planned.

But just as well as the lunchtime carer didn’t turn up anyway.  In fact no carers turned up as they had all apparently been sent to the wrong door number!

In fact the whole week has been a disaster.  Despite ringing the Agency and making sure they had the correct details, we never once had the four visits a day which were promised.  At best we had two calls and mostly only one and no evening calls at all.  Thank goodness she didn’t go home on her own!

Eventually the Agency said they didn’t want to cover mum any more on the excuse that it was too for the carers to travel – yet my house was much closer to the transport links than my mum’s had been!  The carers said they were fine but blamed the management!  So the poor social worker was now left having to find a new Agency.  I did have to direct him away from one Agency in particular as they used to come, sign in, disappear to a private client or do their shopping and then return to sign out.

So it has been a nightmare having to do the caring myself alongside all the other stuff, like finding a new doctor, notifying everyone of change of address, arranging physio and OT appointments etc etc as well as being called out in the night and trying not to get the sack in the process. But I suppose at least she seems comfortable and is out of that care home.

Not enough time or space

I asked for time to get the room ready for mum but even I underestimated what was involved.  It has been a real panic trying to getting new non-slip flooring measured, ordered and laid in just one week (my carpet was moth ridden I am ashamed to say), furniture delivered and all the supplies ordered.  But the room is I hope more or less ready.

The hospital agreed to provide mum with an adjustable hospital bed.  I couldn’t believe it – this would be such a great help.  Strangely she was not entitled to one before, despite the fact that she was not able to turn over in bed or sit up.  I had tried a grab bar but it made no difference. Clearly having a stroke ticks the right boxes.  They even offered to provide a small over the bed table and a pressure cushion for the chair.  The only problem was they needed to deliver straight away.  I did manage to delay it but only until the day after I returned home from visiting my brother, so the flooring now became critical and the thoughts I had of redecorating had to go out of the window. Probably just as well as it was a bit ambitious.

I had to buy an arm chair which had to be a certain height and obviously need to get that in before mum came or she would have nothing to sit in, so that took lots of research and phone calls to get it delivered in time and also new single bedding and a baby monitor for the nights.   I acquired my son’s bathroom stand (from uni) for her pads and toiletries and splashed out on a video doorbell so she didn’t become anxious if anyone knocked as I could answer remotely.

I was unable to get a wardrobe and chest of drawers in time, so she still had to live out of a suitcase for a few days but now they are here but there is still nowhere to put everything!

I can’t believe she needs so much stuff and we haven’t even brought her personal things from home yet!  She needs towels, flannels, soap free toiletries, a bowl, telephone, waste bin, commode, frame, footstool, doorstop, extra bedding, waterproof things plus old towels, tissues, incontinence pads and sheets, toilet rolls, wipes, medication, pill cutter, creams. disinfectant, air freshener, television, non slip bed socks plus somewhere for visitors to sit.  The room is fairly big but I really need to be better organised as everything is all over the place!