Tag: carers

A day in the life – the start.

You know a bit about me, and a little bit about what I do.  This time, I want to give you an insight into 24 hours in my life as as carer.

Are you sitting comfortably? Then I’ll begin.  The alarm goes off at 8.30 but I am generally awake before then.  I’ll have probably woken up at least an hour before it goes off.  We expect care help to arrive ( usually from Maureen who works with us via an agency ) at 9.00 so I need to be up and about to let her in.  The care is scheduled for the same time every morning so my wife has a routine.  Maureen and I will go upstairs to get her out of bed.  Our bedroom is the largest in the house and is in the converted loft.  It has the most room for the size of bed we have which has one of those Tempur mattresses – it’s the only mattress my wife can sleep on.  Anything else causes her a lot of pain, no matter how comfortable it’s advertised as.

My wife cannot bear weight on her legs and has greatly reduced upper body strength.  So once she’s woken up, Maureen and I will swing her legs over the bed and sit her upright.  My wife will take a few minutes more to get her equilibrium – she’s prone to black outs as her blood pressure can drop if she’s moved too quickly.  Once ready, Maureen and I will lift her out of bed and onto a transfer chair – it’s not a wheelchair as you might recognise it, more like an aluminium office chair on 4 castors.  By lifting I mean I’ll lift with my hands under my wife’s armpits while Maureen lifts with hers behind the knees.  We’ll spin 180˚ and lower her gently onto the transfer chair.  We’ll wheel the transfer chair to the stairs and lift her from transfer chair to the stairlift.  ( Note: we have no hoists – we’ve been told that our home is not suitable for hoisting equipment. 1) it would be impossible to get one upstairs. 2) the downstairs bedroom doesn’t have the room. 3) our front room doesn’t have the room. Notwithstanding the fact that, for H&S purposes, TWO people are required to operate hoisting equipment – but never mind. )  Maureen and I will follow as my wife travels downstairs on the stairlift.  At the bottom of the stairs, there’s no room for two people to lift her off the stairlift so I’m on my own for this one.

I have to perform a lot of these single-handed lifts during a day so I think it’s worth taking the time to describe them properly.  My wife’s MS causes her leg muscles to spasm.  In most cases ( but not all ) the spasm makes her legs bend involuntarily.  Yet because she has no control over the muscles in her legs, I have to straighten her leg out manually to enable the muscles to relax.  The spasms make it very difficult to straighten them.  So, back to the lifting – whilst in a seated position, I have to manually manipulate my wife’s legs so that her feet are flat to the floor.  This is because, in a seated position, the spasm will make her legs “fold back” under the seat.  I’ll ensure her feet are on the floor and she’s in a normal seated position.  I’ll ask her to put her arms around my neck while I grab the back of the waistband of her trousers with one hand, and one hand under her right thigh.  I’ll ask her to lean forward as far as possible while I rock backwards, using my neck muscles to start the lift.  I’ll then use my arms to secure the lift from their positions so I have one arm round her back and the other under her bum cheek ( biology wasn’t my strong subject! ).  These lifts hurt her back.  I hate causing her pain but I can’t think of another way of lifting her.  No matter how many times we’ve described or demonstrated these lifts, we are not getting hoist equipment.  Once I have her in a quasi-upright position, I’ll swing her round and gently lower her onto whichever seat she needs to be on next.  Every lift causes my wife pain in her lower back while I’m lifting and pain in her legs and hips when I’m manually straightening her legs.  It’s crap but it’s the best I’ve got.

If I were a teacher of languages I’d be asking you to write the above paragraph in your vocabulary books under the word “HOIST”.  But I’ll settle for asking you to remember this description.  When I’m referring to “hoisting” my wife, I’m not using mechanical equipment, I’m using some cobbled together manual lifting thing.  

Getting back to the bottom of the stairs…. I’ll “hoist” my wife off the stairlift and onto an attendant wheelchair which Maureen will have positioned while I’m preparing the “hoist”.  Maureen will wheel my wife into the bathroom where we’ll both take her pyjama bottoms and incontinence pants off, then lift her on to the toilet.  This gives us time to catch breath and to fill the sink to wash the dishes.

After my wife’s been to the toilet, Maureen and I will get the shower ready.  The shower is actually one of those mixer style tap and hose things above the bath.  Running the water and making sure that the temperature is right, getting all of the towels ready, getting the battery-operated shower seat raised and ready with the non-slip mat on the seat.  Maureen and I will lift my wife from the toilet directly onto the shower seat, and remove the rest of her clothes.  Again, the spasm makes my wife’s legs fold underneath her so Maureen will keep her body still on the shower while I manipulate her legs and stop them getting trapped under the shower seat when it lowers into the bath.  Once lowered, Maureen will shower her while I get on with making breakfast ( nothing complicated – just cereal, coffee and fruit juice ), washing the dishes and sorting the laundry ready to turn the machine on once the shower’s finished.

After the shower, Maureen and I will lift my wife from the shower seat ( once it’s been raised so it’s flush with the side of the bath ) onto the wheelchair.  I’ll wheel her into the hallway to get dressed.  Why the hallway?  Because the hallway has the most space for us to dry her and get her dressed.  So Maureen will dry her top half while I dry her legs and feet.  We’ll both put my wife’s daytime incontinence pants on her and put her dressing-gown on.  I’ll wheel her into the front room and “hoist” (did you remember the meaning?) her from the wheelchair to the reclining armchair that she uses for the bulk of the day.  I’ll give my wife her first 11 tablets of the day ( including multi-vitamin ), and give her breakfast.  Maureen will tidy the bathroom, the bedroom and the kitchen before she leaves for the day.  Trust me, I – we – would be lost without the help we get from Maureen.  She is amazing.

I think I’ve written enough for now.  I don’t want to bore the crap out of you ( that is if anyone’s still reading this – and, if you are, thank you! ).  The above paragraphs constitute just the first hour of the day but each day starts the same way.  I’ll split the rest of the day into pieces and save them for future posts.

Stuff you don’t know about me. (Well, most of you.)

A few hitherto ( mostly ) unknown facts about me:

1. I grew up in a small town in South Cumbria.  Some people class the town they grew up in as home.  I don’t.  I have no desire to return there to live.

2. I have no siblings. ( awwwwwww!! )

3. I have no children.

4. My first girlfriend fell pregnant with my child (unexpectedly) and decided to terminate the pregnancy.  I wasn’t consulted.  This still hurts me.

5. I want to get a degree. For no other reason than to prove to myself that I have the capacity to do it.

6. I love Italy – the country, the people, the culture, everything.  I’d be quite happy living there.

7. I have taught myself to speak Italian.  It’s taken me two years to get as proficient as I am.

8. I used to play rugby league.  I wasn’t any good but I really liked being part of a team and the camaraderie.

9. I have never smoked.  I have never taken drugs.  And I no longer drink alcohol.

10. An ex-girlfriend’s friends spent an entire weekend trying to get me to try drugs, and didn’t like my refusals.  Their persistence became very dull, very quickly.  It was a very short-lived relationship.

11. I got *so* drunk on my 30th birthday night out that all I remember is waking up about 6am on a grass verge under a flyover on the A19.  I have no idea how I got there and I was lucky to escape just with concussion.

12. I can’t swim and I never learned to ride a bike. ( awwwwwwww!!! again ^_^ )

13. I enjoy painting in acrylic and would love to earn a living from artistic endeavours.

14. My childhood memories are peppered with parental arguments and domestic violence.  My parents divorced when I was 15.

15. My relationship with my Dad only improved after he was diagnosed with cancer.  He died 7 years ago and now I miss him.

16. I talk to my Mum every day.

17. I broke my wrist at school when I was 8.  The teachers didn’t believe it was broken so had to stay in school for the afternoon with my wrist out of place and in pain.

18. I’ve never been arrested. ( I am *so* dull! )

19. I like walking round the house bare-footed.

20. I really like clothes and I like to make an effort in my appearance.

21. I am married ( read the blog. Keep up! ) but our circumstances mean that in many ways I still feel very lonely.

22. I lost my virginity at 16 and since then I have slept with 11 women.  I am neither proud nor ashamed of that figure.

23. I love to travel.  To me travelling is a much a part of a holiday as arriving at the destination.

24. I like coffee.  Especially macchiato.  ( Apart from the one that Starbucks likes to refer to as caramel macchiato.  This is *not* a macchiato! )

25. I had to take an ex to court to resolve a property dispute.  She didn’t think I had the courage or tenacity to see it through.  It took me two years but I proved her wrong. And won.

26. I was one of the unpopular kids at school.  Y’know, the one you don’t invite to parties and stuff – the one that girls avoid?  I still wonder if I’m that unpopular kid.

27. As a kid, my favourite footballer was Steve Coppell and I’m a Man Utd fan.  I filled my Football ‘80 sticker album and the last one I needed was a Stoke City badge.

28. I was accident prone as a kid and still have a small, permanent bump on my forehead as a result.

29. I have had conversations with a few well-known people on Twitter but I won’t RT them.  ( A gentleman never tells! )

30. I am lucky to speak to so many fantastic people on Twitter.

The internet – judge, jury and executioner.

It’s been a quite week for judging people, hasn’t it?  It’s been judged that the News of the World is no longer worthy of publication and the 200 mostly innocent people now out of jobs are somewhere beneath amoeba in the grand scheme of life.  Journalists give their judgements on celebrities’ private lives, while those same journalists have their choice of writing subject judged as being too trivial for intelligent consideration ( e.g. Sali Hughes on Cheryl Cole ).  The world seems to be permanently wearing its collective wigs and robes in readiness for passing judgement on some subject or other.

One such subject of intense judgement was brought to my attention over the last week courtesy of @BrokenOfBritain on Twitter.  The story of Shana Williams, a woman whose husband was severely disabled in a car crash, was published by the Daily Mail’s Femail section.  The story appears to me to centre around two of her decisions: 

i ) not to be her husband’s full time carer, and

ii ) to begin a relationship with another man whilst still married to her husband.

I have a great deal of sympathy for Shana.  The life she looked forward to when she married has been denied her.  She’s dealt with it all in the way she’s thought to be most appropriate to her and now, with this article, her decisions are very much in The Court of Public Opinion.  I have a great deal of sympathy with Shana because of the things that I’ve previously touched upon in this blog and other things I’ve not let out into the public domain.

The article states that Shana has some professional experience of caring as a nurse and has decided that being a full-time carer, a mother to two sons and continuing full-time employment was beyond her.  She arranged for her husband to be placed in a care home.  I don’t envy the decision she’s made but I do respect it.  And I will not judge her.  Being a full-time carer is a demanding role – both physically and mentally.  I didn’t choose to do it.  By which I mean I didn’t apply for it and I didn’t study any specific qualifications to do it.  I do it by dint of the fact that the person to be cared for is my wife.  The woman I fell in love with and married.  Don’t assume that I care for her with a smile on my face and lightness in my heart every day.  That’s not true.  There are an increasing number of times when the exact opposite is true.  I chose freely to do this and it’s a decision I make every day – hell, sometimes every minute.  Shana chose differently and has my respect for that.

The paper then goes on to touch upon the fact that Shana has recently begun a relationship with a man other than her husband.  This second decision seems to have exorcised those people who love nothing more than to spray their bile on comment sections.  Let’s make this clear, Shana didn’t start this relationship with another man immediately after her husband went into care.  I’m not going to try and guess what she was thinking.  She may have lay awake for many nights contemplating the possibility before beginning the relationship.  It might have been an instant attraction that took her by surprise.  I don’t know and the article doesn’t make it clear.  I’ve read many similar stories on carers’ forums from people who care for their husbands/wives/partners.  Some writers have their own solutions to being in an extremely difficult position, i.e. being in an unfulfilling relationship – from escorts to affairs to accepted celibacy.  Others have no idea how to deal with this most personal and intimate of subjects.  The one common denominator seems to be the anguish they put themselves through .  Many, many weeks, months or years of frustration.  As I’ve written, Shana may well have been through this too.  But, however her new relationship began, she did not deserve the raging torrent of enmity poured on her personal life from malicious commenters.

The Mail article states that “…only those who have made such a self-sacrificing choice have, ( Shana ) believes, the right to judge her."  I disagree.  She deserves the right not to  be judged AT ALL.  The right not to have her character assassinated by those who are full-time carers OR those who have no semblance of idea what she’s gone through to reach her decisions.  I’ve written about being judged as a carer before.  I’m not looking to be cast as a paragon of virtue or an icon of immorality because I’m neither.  I’m just me.  I face many of the same inner struggles as Shana but our circumstances are different.  I don’t know what lays around the corner with my wife’s MS.  I don’t know if I’ll reach a breaking point and want to run a mile, never to return.  All I do know is that, like Shana Williams found, my life – and, yes, that of my wife – is not what I envisaged when we met 9 years ago.   Our relationship is radically different from when we met too.  And IF my outlook to caring changes in the future, I reserve the right to have my decisions respected and not to be judged either.  You can shove your wig and robe up your arse.

Wait? What? What just happened…..?

Do you know what a PHQ9 is?  Or a GAD7?  I do.  These are check sheet tests used by the medical profession ( among others ) for people who are showing symptoms of anxiety, stress and/or depression.  I have filled in quite a few of these test sheets.  One of the PHQ9 questions reads as follows: 

“ ( Over the last 2 weeks, how often have you been bothered by the following problems ) Feeling bad about yourself – or that you are a failure or have let yourself or your family down? ”

This question resonates with me emphatically.  Because that’s how I feel.  Like I’m some sort of failure.  A hopeless case.  Why?  As I’ve said in previous posts, MS has taken so much away from us, from me.  My role is not what society would deem to be the normal role of a husband, of a man.  Look at any newsagent’s shelves and you’ll see many instances of people undertaking caring roles.  These people are celebrated for their achievements and how they’re able to cope with what life throws at them.  Great, yes?  Look again.  And tell me what publications you see these stories running in.  Publications which are targeted squarely at the female market.  Now look at the male end of the market – anything from GQ and Esquire through Men’s Health to the likes of Loaded, Nuts, et al.  How many of these magazines are carrying similar stories?  None.  Nil.  Not one.  I accept that there are now magazines aimed at fathers, FQ to name but one.  Great, these are caring role models aren’t they?  Yes, to a degree.  But there are major differences in those fathers and doing what I do.  What they do and what I do are NOT the same thing.  I have no contemporary benchmarks in the mainstream media for what I do.

Being a carer is a very isolating business for me.  It’s physically and psychologically demanding.  Yesterday afternoon I was sitting outside crying to myself after a particularly fraught few days.  Little did I know that the day was yet to get worse.  I’d been trying to keep up appearances for a few days but secretly feeling a bit disconsolate.  I’ve not been able to see any brightness in life.  I’m 40 years old and I feel I should be getting more out of life.  And here’s where the question from the PHQ9 comes in.  Because all I see from society, from the media, are female role-models for carers, I feel like I’m not doing what I ought to be doing in life.  So I feel like I’m letting my wife down – more importantly, I’m letting me down.  I start beating myself up for getting so bogged down in it all that I begin to think about chucking it all in.  Which makes me feel like I’ve failed as a husband.  Failed as a carer.  Failed as a bloke.  But that’s not a great thing to do, right?  So, I bottle it all in and get on with what needs doing.  Until yesterday evening…

I was making dinner and I felt a gripping sensation at the top of my stomach.  It’s just wind, it’ll go eventually.  But 10 minutes later, it’s not gone away.  Try and drink something fizzy, that’ll do the trick.  No.  It’s got worse.  So I call the neighbours to come and keep my wife company.  Now I feel dizzy, and my fingers are tingling.  My heart’s thumping a gabber beat that I’ve no particular desire to dance to.  And I’m sweating.  A lot.  I can’t go to the GP as it’s closed so I try the out-of-hours service where I’m asked many questions and told I’d receive a phone call back inside 20 minutes.  20 FUCKING MINUTES!!!!  I FEEL LIKE I’M HAVING A HEART ATTACK!!!!  20 MINUTES IS NO GOOD TO ME!!!!  I dialled 999 and called for an ambulance.  When it arrives, I’m wringing wet with sweat and my heart’s gone speedcore.  I have various wires and nodes attached to me and my heart output is printed from an echocardiogram machine (ECG).  They take me to hospital where blood is taken, further ECG tests are done, and I’m left in a side room for a couple of hours while a doctor becomes free.

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Because I am, otherwise, normally healthy, this is diagnosed as a panic attack.  A severe one.  Many questions are asked about the state of my mental health and I answer candidly, and because I’m waiting for an appointment with a counselling service, I’m discharged home.  Physically feeling better.  Definitely feeling more relieved ( I’m not dead!! ).  But still feeling bad about what’s happened.  Today I’ve been told by my GP that the panic attack was my body’s way of letting out the anxiety and depression that I’ve been bottling up, and that I need to start taking better care of myself or I’m heading for a breakdown and then what good would I be to me, or anyone?  Then how bad would I feel?

A small “c” change.

Tomorrow marks a start of a big change.  My wife has been granted what’s known as “recreational care” sessions ( care – small “c” change – get it?? Oh never mind… ).  These are intended to give me respite from caring for a few hours at a time, letting someone else take charge for that short time.  Two afternoons, twice a week.  For now.  It’ll also give us small breaks from each other.  I mean, with the best will in the world, being together 24 hours a day is pretty soul destroying for us both.  Not to mention very dangerous for our marriage.  As I’ve written before, it feels like being married to the disease and not the person – such is its domination over our lives.

This means I can get some rest or more sleep.  I can paint or listen to music or read a book.  I can have a relaxing bath or get some exercise.  But, knowing me, I’ll most likely do the usual, banal stuff and endlessly tweet about it!!!  Anyhow, I’m free two afternoons a week for coffee, tea, small excursions, etc.  Any ideas???