Tag Archives: carer

Groundhog Day

I arrive at my parents’ apartment yesterday and as I get to the top of the stairs I hear my Dad saying in an agitated voice “you should have handed it to Jak!”
“Well where is she?!” my Mum replies testily.
“She’s just coming up the stairs now!” my Dad is clearly in a tizzy.

I take a deep breath and slap a smile on my face ready to face whatever crisis is looming.

“What’s happening?” I ask.
My Dad is clutching the phone. “We’ve just had TalkTalk on but your mother hung up on them”.
They’ve been having problems with their phone line since January and I have had such a nightmare with TalkTalk that I complained to Ofcom this week. As my parents are vulnerable and disabled they have a legal duty to prioritize any repairs.

What my Dad doesn’t know is that I’ve made a formal complaint to TalkTalk’s head office and I told my Mum that if they rang her to simply say that my Daughter is dealing with it, please contact her and hang up. The reason being, TalkTalk have tried to keep my parents on the line for over 2 hours the last three times they’ve contacted them and it’s stressed my Mum to the point of ill health.

Just then, the phone rang again and it was TalkTalk, the upshot of which is they are sending the 5th engineer out today as a matter of priority. My Dad looks at me with tears in his eyes and says in a chocked voice “You are such an Angel. I have no idea what we’d do without you”.


My Mum, OTOH, seems very confused.com and I realize she is absolutely hammered. At 11.30am. FFS.

They sit down to their lunch, a ready meal I got them from Tesco.
“We didn’t get the meal for two” Mum slurs accusingly “we got 2 separate meals for one”. I look at the pile of food on each of their plates and don’t think they’ll starve any time soon.
“OK” I reply and change the subject.

My Dad tells me he’s been speaking to their next door neighbour who’s son had a baby yesterday. A little girl called Harper. Lovely 🙂. Within minutes of that conversation, my Mum pipes up “Lee’s wife had a baby girl yesterday. They’re calling her……………what did they say Dad?”
“Harper” he replies.
“Harper!” Mum exclaims.
“Lovely” I say.

They finish their lunch and I ask if they enjoyed it. Mum tells me “It was really nice but we didn’t get the meal for two, we got 2 separate meals for one”.
I take a deep breath and smile before replying “well, it looks like there was enough”.

Half an hour later we’re discussing plants in the garden, which inevitably turns into an argument between my parents on which of the greenery on the wall opposite the lounge is a honeysuckle. As tensions rise I try to diffuse the situation by telling them it’s not worth rowing over a bush. My Mum then announces, smiling falsely “Lee’s wife had a baby girl yesterday. They’re calling her……………what did they say Dad?”
“Harper” we both reply.
“Yes, Harper. I like it” states Mum.

My Dad clears away the plates and makes us all a brew. As I tuck in to the Celebration chocolates Mum tells me “Y’know those meatballs we like?”
“The ones I got you with your shopping yesterday?” I ask, knowing what was coming.
“Yes. We didn’t get the meal for two, we got 2 separate meals for one instead” her tone is suspicious.
“Does it matter?” I ask, unable to conceal my irritation.
“No. No. Just sayin'” she slurs.

I take the cups away to the kitchen and begin to wipe the counters down.
“Jak!” Mum shouts through at the top of her lungs, “Guess what? Lee’s wife had a baby girl yesterday! Isn’t that nice?”
I can’t resist. “Yes, I know. Harper. You’ve already told me”.
“Well I can’t remember telling you!” she shouts back, clearly narked.

6pm that night I’m lying in the bath, hair covered in shampoo, when the phone rings. It’s my Mum. “I just wanted to tell you that Joan’s son Lee had a baby yesterday!” she tells me excitedly, “isn’t that lovely?”
I know I should just let her tell me the tale, but I’m tired and hormonal and have Johnson’s Baby shampoo in my eyes which, let me tell you this for nothing, does sting and I can’t help myself “I know Mum. A little girl called Harper. You told me when I was there today. Three times.”
“Oh” she’s both disappointed I’m not excited at her news and embarrassed, which comes out as anger. “Well I’m sorry to have bothered you!” she says in a huff and puts the phone down.
Maybe if you weren’t roaring drunk every fucking day you might actually remember conversations with your precious child. I don’t say that of course. What would be the point?

Today is a new day, in which I’ll inevitably go through versions of yesterday all over again. Like a Groundhog. A fat, middle aged, tired, sick, hormonal Groundhog. I reach for the Jaffa cakes, my second packet this week. Fuck it. I’d rather be a fat but chilled Groundhog than a thin loonatic, rocking in the corner and dribbling.

A thankless task

It’s 5.15pm and I’ve just dropped my Mum off at Urgent Care in town. I’m feeling woozy and light headed, because I’m usually in bed by 4pm and my illnesses don’t take time off when crises hit. My Dad’s with her, but that’s no consolation. Lovely fella my Dad, but absolutely and utterly feckless.

Last Friday I was chatting to Mum on the phone and she says “I have something to talk to you about when you come on Monday. It might not be something you can help with and I might have to put up with it forever, but I still thought I’d talk to you about it.” What now? I think to myself, fearing the worst.
“I can come through today Mum” I tell her, “you don’t have to wait til Monday.”
“No, it’s fine” she says, then sighs.
“What’s the problem?”
“I’ll talk to you on Monday” she says cryptically, and I wonder if it’s about my Dad but she can’t tell me because he’s there.
“Well, if you’re sure” I reply, concerned.

I worry all weekend about what the issue could be. Has she found a lump? Is my Dad’s dementia worse? The possibilities are endless.

I go on Monday to do all the jobs she lines up for me each week and ask her gently “so, what is it you need to talk to me about?”
“I was wondering if you could switch the sofa and my chair round. I hate seeing all these trailing wires” she points to the cable for her electric chair, plus the cable for her lamp, the plug cable for the phone and the plug cable for the video doorbell handset “but if the sofa were in the corner where my chair is they would be behind it and you wouldn’t be able to see them.”
I’m flummoxed. “Okaaaay……..we can have a look at that in a minute” I say trying not to sound irritated, “but what did you want to talk to me about?”
“That’s it” she says, surprised.
“What’s it?”
“Hiding the cables!”
It takes my brain a few seconds to process what she’s saying. “So that’s what you wanted to talk to me about? Swapping the furniture around?”
“Yes!” she looks at me like I’m stupid.
I inwardly roll my eyes, not believing I’ve spent all weekend worrying myself sick over moving a settee. FFS.

I start sliding the sofa around on the wooden floor. It’s not difficult but I’m sweating like a hog on a spit. I glance at the thermometer which tells me it’s 27.3C. “Did you turn the heating up for some reason Mum?” I ask her “only I’m sweltered!”
“Well it was chilly last week so I turned the green button up on the radiator” she tells me.
“How high did you set it?”
“I DON’T KNOW! I can’t get down to see the dial, so I just turn it right up” she’s irritated I’m asking because she knows I know she can’t see the dial.
“Well, would you mind if I turn it down a bit?” I ask patiently “before we all die of heat exhaustion”.
She humfs and walks off.

Swapping the chair and settee around is the easy bit. The hard bit is re-sorting all the cables. I had them all in a cable tidy next to her chair and had put a 4 socket plug on the wall at chair height so that she could turn her lamp etc. off easily at the wall. Now, I have to unplug everything, pull out the massive corner unit I’d fed the extension cable round and re-plug everything in. So now, instead of all the wires being neatly in the corner of the room by her chair they are halfway across the lounge. And you can still see them. In fact, you can see them worse than before. And to make the situation worse, there is now no way she can turn her lamp on and off as she can’t reach the switch. FFS.

This morning I get a phone call. “Are you busy today?” she asks.
“No, it’s Friday – I never usually have plans on a Friday” I tell her. “Why?”
“My bell’s not working.” Bell. Bell? It takes me a while to figure out she’s referring to the doorbell.
“Ah, I wonder when I unplugged everything on Monday whether it’s upset it. I’ll come through and have a look after lunch” I tell her.

It turns out that the wireless video doorbell had turned itself off at the handset (my Mum has a tendency to keep her finger on buttons too long, and if you do that to phones it switches them off). So I turn it back on and all is well. I can’t explain what the issue was to my Mum, though, because she’s pissed as a newt and won’t even remember I’ve been today let alone any conversation we had.

We get on talking about wheelchairs and how the footrest on Mum’s keeps flopping down and hitting her leg. “I’ll take a look at it while I’m here” I tell her, going and getting it out of the boot of their car. The footrest arm is bent so I’m not surprised it’s not staying up. Plus it isn’t locking into position properly.
“It’s never been serviced since you got it Mum” I tell her “so why don’t you and Dad have a tootle through to the city next week and you can have a look round Dunelm Mill for an hour while they fix it.”
“Good idea!” she slurs, so I ring up the service centre and book it in. But they aren’t providing courtesy wheelchairs due to Covid, so I then have to ring shopmobility and book them a courtsey wheelchair from there.

By now it’s 4pm and I’m getting groggy and really tired. So I put the dog’s harness on ready to leave.
“Before you go, would you have a look at my arm?” Mum asks.
“Why? What’s wrong with it?”
“I banged into the door this morning and chipped a bit of bark off” she laughs merrily. “It’s bloody sore but”. She rolls up her sleeve to show a bruise the size of Kent and a humongous blood soaked plaster. I’ve been there for 3 hours and she waits until I’ve got my coat on to mention it.

I try to get the plaster off and it’s stuck to the wound like cement. Not only that, but her skin is so fragile it’s ripping it off as I pull. So I take a lonnng time gently prizing it off her arm and she actually screams aloud in pain when I take off the final piece. Below the plaster, nearly 2 inches of skin is rolled back to reveal bloody, raw, gaping flesh.
“Oh my God Mum!” I exclaim horrified.
She leans back in the chair and moans.
“Dad, get your car keys. She needs to go to Urgent Care to get this wound dressed. If it gets infected anything could happen, plus the skin needs to be glued back on”.
He starts flapping around in a panic and the fact Mum doesn’t argue with me about going to the hospital speaks volumes.

They tell me they’ll be fine on their own, but I go ahead of them anyway. You can’t just waltz in to A&E these days. They stop you at the door, you have to put on your mask and use hand sanitizer, then you ring a bell. The receptionist then calls you via a phone on the wall. I book Mum in (there’s no way either of my parents would have been able to hear what the receptionist was saying on the phone) and they arrive shortly after. Only then do I come home, trying not to be embarrassed about how Mum will be acting with the nurses as she’s clearly drunk.

As I’m typing this final paragraph the phone has rung. It’s Mum to say that she’s had several butterfly stitches, a sterile dressing put on the wound and her arm bandaged. She has to go back on Monday for a new dressing and to check for infection. I can relax a bit, but feel too stressed and sick now to eat any supper.

It’s just been an ordinary week as a Carer of old, frail and confused parents. There are always jobs to be done and crises to deal with. The sad part is, my Mum won’t remember a damned thing I did for her today so it’s a good thing I don’t rely on praise or thanks. Just love.

Covid-19: can I just…?

I am as stunned as everyone else at the pictures and videos appearing of crowded public spaces this weekend.  People were arrested for having a b-b-q on a beach, while others couldn’t see anything wrong with sunbathing or busking.  3,000 souls visited one London park which has now been closed, meaning the people who use it for their permitted daily exercise in the concrete jungle we call our Capital now can’t.  FFS.

The Government website lists 4 reasons why we can leave our home:

  • shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
  • one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
  • any medical need, including to donate blood, avoid or escape risk of injury or harm, or to provide care or to help a vulnerable person
  • travelling for work purposes, but only where you cannot work from home

Despite this, some people are deliberately flouting the rules while others are doing so unwittingly because the rules are ambiguous and open to interpretation.

1. SHOPPING FOR NECESSITIES

There is no ambiguity here.  You can collect a prescription or visit a pharmacy for medicines.  You can visit the shop or supermarket for essential food items.  End of story.

Despite that, some people still aren’t getting it.  On my daily run out on my mobility scooter last week, I met an elderly chap in my village out on a walk.  He was telling me he still drives a mile in his car to the next village each morning to buy his newspaper and couldn’t see anything wrong with that.  He wasn’t being defiant or malicious, he just didn’t get that this wasn’t an essential journey for necessities and I think many folk are making journeys simply because they’re not grasping the concept of essential.

Early on in the pandemic, before lockdown, my Dad was also walking daily to the supermarket for his newspaper.  He liked the exercise, enjoyed the social interaction and sitting with the paper and his breakfast was his favourite part of the day.  I had to be very firm with him to stop doing that once lockdown was announced and arranged to have his newspaper delivered instead.

2. DAILY EXERCISE

While on the face of it this appears a simple instruction to follow, it’s actually caused huge confusion and I think the government needed to be much more clear on what this entails.  The Health Secretary, Matt Hancock, appeared on Question Time last week to clarify the position and ended up, in part, muddying the water further.

He said that a walk for an hour, or a cycle ride for half an hour, in the area where we live, would seem sensible but that if we’re up to it we can exercise for longer.  NO Mr Hancock.  You give clear instructions and the instructions should be we can walk for up to an hour, or cycle ride for up to half an hour, in the area where we live, and that should be it.

Much confusion has arisen over whether we can drive short distances, park up and exercise on, for example, a public footpath.  In our rural village this has caused aggression and vigilanteism, with people putting notices on parked cars, ranting on Facebook and me personally being verbally attacked.  This, at least, was clarified by Mr Hancock who states very clearly that it is permissible to drive up to 5 minutes in the area where we live, park up and then walk with our pets or household members.

This instruction is really important for someone like me.  I am in the vulnerable group, and caring for parents in the shielded group.  I have been very strictly self-isolating for 3 weeks now so that I can continue to provide face-to-face care for people who can’t manage on their own for the next 3 months.  I have mobility problems of my own and can’t walk for up to 5 minutes some days, let alone a mile, but I still need to get fresh air and let my dog have a poop.  However, I want to exercise in very quiet parts of my area to avoid coming into contact with other people, so I have been driving maybe ¼ mile outside my village and parking up to walk my dog, either on the way back from an essential trip to care for my parents, or on the way to.  It’s great that the Health Secretary has now clarified that this is permissible.

3. ANY MEDICAL NEED, INCLUDING CARING DUTIES

This seems straight forward, but it took a lot of reading and reassurance that I was still allowed face-to-face visits to care for my parents.  You can’t just pop in to check your elderly relatives are OK.  You can drop off shopping and prescriptions, but these need to be left on the doorstep and the relative should then take precautions when bringing supplies inside the house, ie disposing of plastic bags, then wiping down cardboard or other packaging then thoroughly washing their hands.

Where you can provide face-to-face care is if the person has an essential daily need they cannot perform themselves.  In the case of my parents they can’t change beds, do heavy laundry, my Mum needs help with bathing and neither can bend to do things like clean the toilet (vital during my Dad’s recent bowel infection).  I am, however, limiting my visits to once a week (I usually go much more than that) and taking the necessary precautions, eg. I am strictly self-isolating myself, when I visit the first thing I do is wash my hands and dry them on a towel kept especially for me, and I keep 2m away from my parents unless I’m performing personal care.

Having said all that, I am technically breaking the rules.  You are only supposed to provide face-to-face care if you fulfil all of the following criteria:

  • you are well and have no symptoms like a cough or high temperature and nobody in your household does
  • you are under 70
  • you are not pregnant
  • you do not have any long-term health conditions that make you vulnerable to coronavirus

And there’s the rub.  ME is classed as a neurological disease, and therefore I am on the Government list as a vulnerable person.  So I shouldn’t really be visiting my folks.  Here’s where common sense kicks in though.  I have been in strict self-isolation for 3 weeks.  I have not been shopping, or out in the community other than a short walk each day in the countryside where I live, and I am taking strict precautions when bringing items into my home so as not to bring the virus in on packaging.  A paid carer from an agency, OTOH, would be visiting other people as part of their job, would be mixing with their own families at home and would be out in the community doing their food shopping etc.  The safest person to provide face-to-face care for my parents is, therefore, clearly me.

Other family members are cooking meals for my parents and leaving them on the doorstep, and going to the pharmacy to collect their medication so that I’m not having to do it which would mean me coming into contact with the outside world.  It’s a team effort.

 

4. TRAVELLING TO WORK BUT ONLY IF YOU CAN’T WORK FROM HOME

This is the worst piece of advice by far.  The Government hasn’t said you can only go to work if that work is essential, they have said you can work if you can’t work from home which applies to half the flippin’ population!  So some folks are carrying on work as normal, which is really angering the other half who are stopping at home and suffering huge financial losses as a result.  The anger, and resentment, is only going to build as the weeks drag on.

In my very rural area, we have a large mine and factory which provides work to thousands of local people.  None of them can work from home, but the factory is still shut because it would be impossible to social distance.

Next door to me, a couple are having their house renovated.  They aren’t living in it, so it’s empty, and the builder is coming as usual to work including having deliveries of supplies.  There were 2 of them there last week and I have no clue if they were adequately social distancing.

Why should the builder be allowed to work and have his usual income, where all the factory workers can’t?

As you know, I have a furniture upholsterer who has a business at the end of my drive.  The day after lockdown was announced he was there as usual, with 2 of his employees, all traipsing up the drive to my and my neighbours’ homes when we are all in the vulnerable group and strictly self-isolating.  He even still had customers, walking up the narrow driveway just feet away from where I and my neighbours live.  I emailed him to say he was not an essential worker and could re-cover a chair in his own home, but he replied saying he couldn’t and he was still allowed to work.  I’m not sure who is right or wrong!  He feels justified to be at work and I feel he is putting our health at risk having a business which uses our domestic properties for access, literally less than a foot away from my 80 year old neighbours’ front door.

The Government should have drawn up a list of essential workers and banned anyone else.  I still can’t believe they haven’t done that.  We are not “all in this together” if some are being given preferential treatment.  I understand the economic arguments but it’s no good having a strong economy if a quarter of its consumers are dead.

So while Mr Hanocock feels he’s been “very clear on this” he absolutely has not and IMHO this needs to change.

 

 

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.