Tag Archives: carer

Weekly roundup

I have had one of the busiest times of my sick life this past 2 months and I thought that after I’d done my talk in Scotland last week that I could finally rest up, because I was on my last legs.  Looking back now, that seems a bit………..naive 😉

I can’t cope with the sensory overload, not to mention the physical effort, of going to a supermarket, so have my groceries delivered to my home courtesy of Tesco.  I’m in love with Tesco – they are the 8th wonder of the modern world – that is until Christmas, when the battle for delivery slots becomes a catfight to the death.  I have a delivery saver plan and therefore have access to the Christmas week delivery slots early, along with tens of thousands of other delivery saver plan subscribers.  We were informed that the slots would be available at midnight on Tuesday night and I knew I had to book my delivery then or I’d have to actually visit the store on Christmas Eve and, having done that last year and barely survived, I’d rather starve.  However, I have been so exhausted recently that there was no way I was going to be able to stay awake til midnight, so I went to sleep around 9.30pm and set my alarm to wake me, which it unceremoniously did at 11.45pm.  The ringing felt like a bomb exploding in my brain but I managed to come to and blearily got myself ready, finger poised, to book my slot on the dot of 12.  With a minute to go, however, I panicked and decided to reserve a delivery for Monday 23rd just in case something went wrong (last year the website crashed and I ended up delivery-less!).  Then on the stroke of midnight the slots for Christmas Eve appeared…………and they all said “unavailable”. Say WHAT?!  Either there were shoppers out there with freakyily speedy index fingers, or Tesco had failed to tell us they WEREN’T FUCKING DELIVERING on Christmas Eve.  Thankfully, though, I had my reserved slot on 23rd, and it’s a damned good job because at 3 minutes past midnight the site crashed.  Again!

It goes without saying it took me about 3 hours to get back to sleep and I woke on Wednesday feeling like I’d been dragged through a hedge backwards.  My plan was to rest up all day because I desperately wanted to go to my Camera Club in the evening, but the Universe had other ideas.  My Dad is on the waiting list for a hip replacement and it was booked for 24th January, but at 2pm on Wednesday afternoon the Hospital rang me to say they had a cancellation for Friday this week and would he like to come in?  Holy crap!  So then I had to go through to town to break the news to my (very nervous) Dad, who’s never spent a single day let alone a night in hospital in his life.  Mum and I got his hospital bag out (they both have one packed ready in the wardrobe for emergencies, well they’re 80 and we think it prudent) while my Dad got in the shower, as you’re supposed to bathe with antiseptic body wash for 5 days before the op.  We then had to change his bed, because he needed to use fresh sheets every day after his shower.  I did still make it to my Club, but by the time I got home at 11pm I was so ill and exhausted my brain was swimming, I was literally seeing stars and could barely focus.  Proabably shouldn’t have been driving – don’t tell anyone!

Thursday I’d arranged to go to my elderly, disabled friends’ house to finally finish his unpacking.  I knew I should cancel because I needed to conserve my energy, but he’s been in his new house 2 months now and hasn’t had the internet all that time because his laptop, modem, printer etc. was still in a box in the spare bedroom.  So I made the effort to go, and thank God I did because I arrived to find his house freezing and him flushed.  Neither the heating or hot water had come on and he obviously had a temperature.   I discovered his gas boiler had no pressure, so I re-pressurized it which got the heating back on but there was clearly a leak somewhere, so I arranged a visit from the plumber the following day.  I then forced him to ring his GP (he wouldn’t have if I hadn’t made him) who told him to go straight down to the surgery.  He landed back with stronger antibiotics because his chest infection was back with a vengeance (it never went – he should have been admitted to hospital the other week for heaven’s sake) and an insulin injector, because she’d found his blood sugar was sky high (he’s type II diabetic).  I wonder, now, if I hadn’t gone that day whether we’d’ve found him the next morning in a hypothermic, diabetic coma :-/

Thursday night I felt like the undead and barely slept in case the alarm didn’t wake me the next morning.

My Dad had to be at Hexham Hospital for 7am, which meant me getting up at 4am.  I have fucking M.E. and waking from deep sleep in the middle of the night, then having to get dressed, eat and venture out into the pitch black freezing cold of winter was never going to make me feel my best.  I dropped Bertie off, picked my Dad up and at 5.30am set off to make the 80 minute journey over the Pennines to the North East.  It’s a windy, twisty, narrow road over the mountains and my brain lurched around in my skull every inch of the way, which made me massively motion sick and at one stage I thought I was going to have to pull over to throw up, but I somehow (and I really have no clue how) got there without crashing and killing us both.  All went well and he was home at 5pm the next day – as it was Saturday my brother offered to go and collect him which was great.  My Dad’s not going to be able to drive for the next 6 weeks though, so it’s going to be a busy time for me – my life is never anything but busy and I just have to give up the expectation of it being anything else!

I’ve woken with a stonking migraine this morning and a raging sore throat (my sign that I’m way overdoing it).  Of course I have, it’s all been too much this week, but I swear I’m going to deck the next person who says to me “you need to rest more”.  Which part of my life would they like me to cut back on, exactly?  Should I leave my sick, disabled, friend to die in a hypothermic, diabetic coma or to live without central heating or hot water in the middle of winter, or without his laptop even though he’s too ill to leave the house so relies totally on the internet for just about everything?  Or should I leave the care of my parents to my siblings, who all work full time and aren’t available at the drop of a hat at 7am on a Friday morning to take my Dad to hospital, or at 11am on a Tuesday morning to drive my Mum 90 miles for a cataract operation?  Or should I not walk my dog?  Or should I not eat, which would negate my need to cook?  It’s not like I’m doing stuff unnecessarily, well apart from going to my Camera Club but even that feels vital – I need something of my own in amongst looking after everyone else.  Instead of the pseudo-caring advice I’m given, it might be more useful to me if these people who tell me to rest more actually fucking helped me in some way – offered to walk the dog, for example, or brought me round a casserole, or offered to change my bed or hoover my floors because I currently don’t have a cleaner.  But they don’t because that would mean they had to put themselves out.

I’m a bit tired and grumpy this morning, as you can probably tell 😉  I’d sell a kidney for someone to go and make me a brew or bring me breakfast in bed, but as I gave up waiting for my Prince to arrive on his white charger about a decade ago I guess I’ll have to do it.  Then I’ve got Bertie to take out, despite the fact it’s -6C outside (and will feel like -10C on my scooter!) and my skull feels like it’s being stabbed by ice picks.  I’m delighted that my Dad is OK after his operation, but I have to be honest and say that just now and again I wish someone would care for me, just for a little bit.  Dream on!

Note:  It’s 8am and I’ve just logged on to my email.  The first mail of the day isn’t from the Lottery saying I’ve won the jackpot, but from my parents’ energy company requesting a meter reading from disabled customers who are on their ‘extra care/at risk’ register.  What the fuck ever happened to Meter Readers?  Y’know, people who came to your home to take a goddamn meter reading?  It’s not like we don’t pay a shit load of money each month for our energy, more than ever before, yet we receive fewer and fewer services.  It’s another chore to add to my list.  And the first person who says to me “have you heard of smart meters?” will die.  Just sayin’.

Being a Carer

As most of you know both my parents are nearly 80 – my Mum is physically disabled and an alcoholic and my Dad has learning difficulties and mild dementia.  They both really struggle with the modern world and are clueless when it comes to technology.

When they first got their cordless phone it took them forever to understand that they now had to press the green button to pick up a call and the red button to finish the call – they kept forgetting to press red then nobody could get through.  It also took ages for them to get used to using the phone book and speed dial, but now they love it because they can’t remember anyone’s phone numbers in any event (can any of us?!).

My Dad now also has a mobile phone on which he can make and receive calls although texting is beyond him, however at least he can ring 999 on it if needed and more importantly we can ring him to check he’s OK when he’s out and about.

I live 6 miles from my parents, but there’s currently masses of roadworks and diversions and I have to drive 9 miles to see them making an 18 mile round trip.  As you know, I was out all day yesterday plus have been feeling rubbish all week so today I’m exhausted but I always ring my parents every morning to check they’re OK…………..and this morning the phone rang and rang and rang and not only did no-one pick up the answer phone didn’t kick in.  Summat was up (as we say in the north).  I eventually got through on my Dad’s mobile, though, so at least knew they were both fine but there was clearly an issue with the landline.

So after I took Bertie out this afternoon I drove the 9 miles into town to discover the base wasn’t working on their cordless phone so neither of the handsets could make or receive a call.  I tried everything Google told me to do and eventually concluded the base had become faulty and would have to go back to Amazon (luckily it’s under warranty).  However, this left them without a landline, vital for Mum should Dad be out and have taken his mobile with him.

So I drove the 9 miles home, picked up an old corded landline phone I keep in case of power cuts, and drove the 9 miles back into town with it.  I plugged it in, rang my mobile on it to make sure it was working, showed mum how to use it and drove the 9 miles back home again.  By this time it was 4.30pm and, as I’m usually in bed by then, I was feeling pretty ropey.

I was just about to get into my pjs when my mobile rang – it was my Mum, using my Dad’s mobile to ring me to say that she’d tried to use the corded phone to ring me but it said ‘number not recognized’.  So I patiently, again, went through how to ring out on the corded phone (“don’t press any other buttons than the numbers” I tell her, “there’s no green or red buttons like on the other phone”).  I asked my Mum to try it again and ring me back.  Nothing.  So I rang the mobile back only to get a voice telling me the call could not be made.  So I tried ringing the landline, only of course it was engaged as my Mum was trying to ring me.  *sigh*.

Eventually Mum gave up trying to ring me so I could then ring her. “What’s happening?” I ask.
“The stupid bloody phone still won’t work” she replies testily and now your Dad’s mobile is saying “sim not recognized”.  I have no fucking clue what they’d done but were effectively now without a phone to ring the emergency services if needed.  I told her to put my Dad on the line, asked him to turn his mobile off and back on again, and he said he had but it still said “sim not recognized”.  FFS.  I couldn’t leave them like that all night, so in my slippers I bundle Bertie back in the car and drive the 9 mile back to town.

I tried ringing my mobile from the corded landline phone and it worked a treat.  I also called my home phone and it worked a treat.  “Well it wasn’t working when I did it!” my Mum shouted at me, obviously embarrassed that the phone was clearly fine she had just pressed something she shouldn’t.  So, using every ounce of patience I possess, I went through yet again how to dial out on the phone when what I actually wanted to say was “well if you weren’t bloody drunk all the time you might manage better!”

I then turned my Dad’s mobile off and back on again and it, too, was working perfectly.

I got back in the car and drove the 9 miles home.  I now feel too sick with tiredness to even contemplate eating my dinner and the much needed bath I was going to have has gone out the window as I no longer have the energy.

Things like this happen week in week out, month in month out, year in year out.  Caring for elderly and confused relatives isn’t just about hospital appointments or putting the bins out – it’s about the million and one little things which frazzle your nerves, test your patience and drain you of energy.  And it’s all doubly difficult when you’re ill yourself and have no-one caring for you.

Thank you for listening to my little rant – I have no-one else to tell y’see and it always helps the frustration to put it down on paper.  The shitty part is I know my Mum still can’t use the corded phone and neither could my Dad if needed, so basically it’s all been a great big waste of time and energy.  I’m off to order a replacement cordless phone with next day delivery on Amazon and to arrange to send the faulty one back.

 

Who Cares?

Until my Nan went into a Residential Care home in 2013 my Dad was the person who looked after her, going round to see her every day of his life.  She had Social Services Home Care workers go in 4 times a day to help her get up, bath her, feed her lunch and dinner and put her back into bed at night, but my Dad did everything else including all her shopping, washing, paperwork, taking her to hospital appointments (which were numerous) and, when she deteriorated, regularly being called out at all hours of the day and night when she fell and couldn’t get back up.

The strain was immense but my Nan was lucky that my Dad at that time was fit and well and able to manage.  He was, however, flagged as a Carer and had an assessment of his needs as a Carer.  He was regularly monitored to see how he was coping and offered the choice of attending support groups to chat and socialize with other Carers because it’s well recognized that taking on a caring role is incredibly stressful and exhausting and can affect both the Carer’s physical and mental health.

I am now in the same position as my Dad.  My Mum is very physically disabled: she has half a lung, is in heart failure and kidney failure.  On top of that she’s an alcoholic so spends most of the day drunk and confused.  My Dad has been suffering with the symptoms of Dementia for 2 years now and is becoming ever more child-like in his ability to cope with day to day life.  As yet they don’t need care to bathe or feed themselves (well, actually, they do and Mum only showers once a week now as it nearly kills her) but they need help with everything else.  I do their shopping, all their paperwork, look after their home, do most of the driving and take them to all their hospital appointments.  I speak to them every day, sometimes several times a day, and visit them 4 days a week.

The difference between my Dad caring for his Mum and me now caring for my Dad is that I’m not fit and well, and actually need help and my care myself.  Which I don’t get.  In fact during my 22 years of chronic illness I’ve never got.

I took my Dad to see the Older Person’s Psychiatrist yesterday for the results of his CT scan.  We were there for a good 45 minutes discussing my Dad’s issues and the amount of care both he and my Mum need and not once did anyone ask me how I’m coping.  Dad, Mum and I all have the same GP who is perfectly well aware of the situation but again has never once checked on me or referred me for an assessment of my needs as either a Carer or someone who needs Care.

How have I manged to fall through the cracks all these years?  Is it simply because I’m young and it’s assumed that young people have husbands, partners and families who will care for them?  But then old people usually have families that will care for them yet they still get state care.  Yes I could refer myself and fight for a Carer’s Assessment but my Dad didn’t have to do that – help was offered to him as soon as his role as a Carer was recognized.

Without sounding like a moaning minnie, my whole illness journey has been underpinned by abandonment.  My entire family, apart from my parents, have abandoned me.  My boyfriend abandoned me.  The NHS have abandoned me.  The care system has abandoned me.  And both my private insurance company, and the welfare state, is currently having a pretty good go at financially abandoning me.  Every penny and every ounce of help I’ve ever received has had to be fought for – and I do mean fought for.  I gave up fighting to keep my relationships with family and friends because I do have some pride and am not about to beg to be loved.

Yet this hasn’t been the experience of many of my friends.  One of my mates who has had ME for roughly the same length of time as me lives with her parents both of whom need care and she’s had a Carer’s assessment.  She has also had 6 monthly appointments with her GP simply to check her progress for the whole 20 years of her illness.  The state has paid for various aids and adaptations to their home, while I’ve been left to fork out for my own despite being on one single low income.  I don’t know why I’ve been left to fend for myself and she hasn’t.  Maybe it’s because I’m so strong and capable and on top of things.  But I’m that way because I’ve had to be, as I’ve had no-one to lean on or help me out.

When I ask myself the question “Who Cares?” my answer is no-one.