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.

Selective hearing

Mum had a fall last night. She tried to use the commode and slipped off.  It was only when my husband starting pushing me, that I realised that the loud ringing I could hear was her calling for help!

All the years I cared for my daughter, I seemed to sense in advance if she was ill.  Even though she no longer lives with us, I still know when she is unwell.  For some reason I just don’t hear my mum!!  I have a video camera in the room with 2 way audio as well as a doorbell and I still don’t hear her.

Tonight she had to press the watch alarm.  I just managed to get to the phone before they turned up.  I forgot to tell them that mum was sleeping in the front room, so they are likely to bound up the stairs into our bedroom one night! Think I had better get that one sorted out early on.

It was a real struggle to pick her up.  I didn’t want to ask my husband as he has been ill himself lately and also has a bad shoulder, but I thought I might have to.  Mum knew to cross her arms, but it was only after a few unsuccessful attempts that I realised she was keeping her legs straight! No wonder I was struggling.  I got her half up and we both fell on the bed.  Eventually, after a lot of struggling, she managed to get into bed properly but they really should provide the family with training on how to lift someone.

Anyway thank goodness she was okay, but we seem to be going backwards.  She was starting to manage in the night, but her leg has been playing up the last few days and she has been having trouble standing.  Painkillers are not helping so it may be connected with her stroke – I have been reading about post stroke pain – and if it is that there is apparently not much they can do about it!  Looks like we are back to some disturbed nights again.

Reminiscing

Had a really nice evening with mum tonight, reminiscing about old times, childhood friends, past family members, family holidays, work and the life she used to live.  It was so nice sharing memories and just having a chat.

Over the past few years I have been so angry with her for growing old and for not making more of an effort to keep active.  I was forever complaining that if she sat in her chair all day she would lose her mobility, which of course she did.  So I considered myself lucky to have been given an opportunity to  restore our friendship.

Over the last few weeks I have actually had a serious shift in perspective.  Seeing mum so vulnerable and dependent after her stroke came as a huge shock.  No one should ever be in that position, being totally reliant on others, tube fed, suffering from frightening bouts of paranoia and confusion and worried about your future. Plus one of the worse things about getting old is that you lose most of your friends, so there are very few people left who remember the real you.

I wonder if my anger with her was all part of a grief process – knowing that I was losing the mum that I wanted her to be and fearing the role swap?