Families

Now the arguments have started.

Mum has to sell her house to pay for her care.  There is a way to avoid this – if I do her care 24 hours, but I need to work and, having been a carer most of my life I know only too well that it will be too much for me to take on full time.  We have chosen the cheapest option anyway by moving in with me and have already sacrificed the ground floor of our house and most of our privacy with all the carers, social worker and therapists coming in and out when they want using the keysafe!

She could rent her house, but it would need refurbishing and neither she or I can afford to do that.  We have already loaned her all of our savings to get a new boiler and replace the kitchen, but the upstairs still needs doing.  We now have the additional costs of food and laundry, electricity etc now she has moved in and anyway any rent will not be enough to cover her care costs, so that option is out.

In the meantime, we are hoping the Council will agree to defer payments for the full cost of her care (her house is now seen as an asset) until the house is sold as she is currently on a low income.

Meanwhile my brother has been sending emails offering investment advice. Clearly I misinterpreted his email as I read it that he was trying to release some of the money for the family, and now he has gone off on one and will no longer speak to mum, accusing her of being selfish (I put it more politely than he did).  My daughter and son also thought his proposals were good and I am stuck in the middle trying to resolve everything.

Mum doesnt want to think about investment and said no.  My thoughts are that she hasnt even got her house on the market yet – and understandably wants to hang on closely to her money and to be able to see it in the bank (she has an App on her phone and checks her balance every day, despite not being able to use the phone to make or answer calls!).  She may change her mind, who knows, but it is up to her what she does – she could give it all away to some stranger if she wanted (hopefully not! and I now have Lasting Power of Attorney so can at least try and protect her from any scams) but she has the right to say no.

She worked really hard to buy her home. We lost everything when my dad got Parkinsons Disease – his business and our home – and ended up in a council flat which then had rain leaking in in every bedroom and carbon monoxide fumes in their bedroom (fortunately they had moved into the loft because of the water so avoided potentially dying in their sleep).  She then took a GCE and got herself a full time job and also worked nights in a burger bar to save a deposit to buy her own house.  Since then, as the only breadwinner, struggled to maintain the house over the years.  Any money she may receive now should go towards making her life as comfortable as possible.  Yes it should be invested wisely, to meet her future care costs and hopefully leave some for the family, but she hasn’t got any yet!  Early days!

Finding a routine

There is so much stuff to do and remember I have had to laminate a list:

Morning: empty commode, wash, dress, brush teeth, change pad, medication, help to chair, move commode to chair, breakfast then leave the following:

water and glass, mobile phone, landline, watch alarm, clock, tv remote controls, paracetamol, fan, tissues, toilet roll, spare pads, bin liners. And on club days – water, sickness tablets and money, more spare pads. Oh and a snack.

Evening:

Wash, put nightdress on, change pad, empty commode, evening meal, medication, senna, painkillers, move commode to side of bed and remember to put the following items on the bed table:

charge phone, charge landline, clock, bell to call me in the night, watch alarm, tv remote controls, water and glass, tissues, fan, paracetamol, toilet roll, spare pads, bin liners. Oh and a snack.

Order regular supplies of pads and pants, tena wipes, fragrance free shower gel, gloves, face wipes, bin liners, toilet rolls, tissues and medication.

And then clean the house, cook the meals, check appointments, pick up after falls in the night, liaise with carers, do the daily laundry and go to work….  I am sure I have forgotten something 😦

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…..

 

Best buy ever

The battery ran out today and for the life of me I couldn’t get the screws out to recharge it!  Total panic and disaster!  What was this thing that I have become so dependent on?  – a video doorbell.  Honestly, it has transformed my life and I really can’t live without it.

In my stupidity I had thrown the box away which contained the screwdriver, thinking it was just any screwdriver – but of course it was not – it was a T6 torx screwdriver!!  What the fxxx was that?  I managed to contact the company that made the doorbell and to my relief and surprise they immediately offered to send me a replacement screwdriver from the USA free!!!  I never get anything free.  It is flying on its way to me now, but I couldn’t wait.  I really cannot survive without this bell.  Already I have missed two parcels because I couldn’t answer the door from work and mum was also ringing me at work, worrying that someone was knocking at the door and no one was in.

Honestly, everyone must get one of these.  It is truly amazing.  My husband was working in the front garden and having a very animated conversation with my son and daughter who were in Australia!! Imagine that!  I had sent them the link but didn’t imagine they could answer motion on the doorbell from the other side of the world.  I have been able to ask a delivery driver to wait, seen where parcels have been left and asked other callers to come back later.

The only downside is that it video’s you installing the thing.  I just hope the company do not keep this data to torment you with later!!  Apart from the practicality of the bell, you can have such a laugh with it too, believe me.  Some of the images it captures could earn someone a fortune on ‘You have been Framed’.

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?

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.