Caring – the never-ending shift.

I had a conversation with another carer recently. This conversation took place on a Friday night but it only really began after we’d wished each other a good weekend. And we both recognised the truth that, although the weekend was about to begin, there would be no distinction between a weekday and the forthcoming so-called days off.

This is something I’ve only acknowledged to myself over the past few weeks. When other people are looking forward to a couple of days relaxation away from work, I just feel flat. Simply because there is no line between Friday evening and Saturday. There is no end of shift or regular day off. I never really know what to say when people wish me a good weekend. I’ll reciprocate the sentiment, of course, because I know that weekends are important to people for all kinds of reasons – time off work, time to see family, and so on. But for me, and the other carer I was talking to, each weekend is very much like every other day – and that includes birthdays, Christmas, etc. That’s because the symptoms MW has are constant. She needs to be got out of bed, washed, dressed, have food made for her, have her catheter emptied, be taken to the toilet to defecate – the list goes on. MS doesn’t take a day off for her.

This realisation was reinforced today by news of a poll carried out by the Carers Trust which says that 60% of carers feel isolated, suffer from depression, are physically exhausted and have financial problems. The story’s case study featured Norman Phillips, a man who had to give up his career to care for his wife who suffers with MS. Norman said that he’d pushed himself to the point where he became depressed, injured his back through moving his wife, and ended up in a cardiac unit after collapsing. He was exhausted – his shift never ended.

The Carers Trust poll seeks to highlight to Government that the UK’s 6m unpaid carers are in need of more support in their never-ending shift. I wonder if they’ll listen?

Sorry. And thank you.

Sorry for not writing anything recently. It’s not that nothing’s happened or that there’s been a miraculous upturn in fortune. I’ve just been busy doing the usual and trying to have some semblance of a social life via Twitter, so the blog’s been put on the back-burner.

However, I’ve received a couple of messages recently from people who tell me that they’ve been moved to tears after reading my posts. This has made me feel a little guilty. I’ve never set out to upset anyone with this blog. But I’m not naïve. I realise that a lot of the information I’ve put on here is very sensitive to me and could possibly provoke strong feelings in others. I get the same strong feelings when I re-read the posts and they’re also partly the reason why there haven’t been any posts for a wee while. Writing about my experiences can be a little upsetting. I’m sorry if I’ve upset anyone else. Can we hug?

I’d also to say thank you to anyone and everyone who reads this. It’s very humbling to think that people take the time and trouble to read my posts. I can’t promise that I’ll blog frequently but I aim to continue the posts from time to time.

From zimmer, to glimmer, to…?

“Will I ever walk again?”

“I don’t know.”, I said, with an expression somewhere between pain and pity.

Now, we both know the answer to this question. No. MW won’t walk again.

Three things tell me that.

1. MW hasn’t been able to walk for the best part of two years.

2. MW cannot stand, cannot bear weight on her feet. One of the basic things we take for granted as people.

3. MW has had no feeling in her feet for months, and has trouble moving them independently.

And yet I was compelled to say “I don’t know”. To offer a tiny glimmer of hope despite the glaringly obvious staring at us both. I couldn’t say it. I couldn’t say, “no”, and take that tiny glimmer away for good.

What would you have said?

Suffering in silence.

I’m sorry there’s been blog “radio-silence” recently. I’ve not really thought I’ve had anything worthwhile to say about the day-to-day things that are happening here. Not that nothing has happened, it’s just that I get tired of hearing my inner voice bang on about the same old things and I assume you get tired of reading it.

However, I’m moved to write something about mental health. This has come to mind after a few people I speak to on Twitter have received a hard time from mindless bullies about their own mental health conditions. I can’t help but think that Twitter, and life in general, is full of people who would mock others’ difficulties without insight but don’t have the intellectual or emotional capacity to either try and imagine what other people are experiencing or justify their cruel jibes.

But the over-riding catalyst for this post is the tragic death of Gary Speed. Gary was a man who, on the surface, seemed to have had a generous helping of the good things in life. He was a successful professional footballer with a long and distinguished career. After his playing career, he moved into football management and was latterly the manager of the Welsh national side. He had looks that were made for television, he had a family which, by all accounts, loved him dearly, and his amiability and warmth made him a man to be admired by his contemporaries and those who looked up to him. Yet he was found on 27th November 2011, having taken his own life at the age of 42.

I felt his death very deeply despite having never met him. I can’t adequately explain why the death of a stranger has touched me in such a way. Perhaps it’s because he was a similar age to me. Perhaps because I’ve watched him throughout his professional career and, like people who appear on our home television screens, I felt as if I knew him or, at least, was acquainted with him. More likely it’s a combination of these two elements alongside a third. That being that he’s alleged to have suffered from depression.

Following Gary’s death, media speculators jumped to the conclusion that he was depressed. Not an unreasonable assumption given the circumstances surrounding his death. One of the questions asked most frequently in the media is how someone who only hours after appearing on live television seeming to be happy, can be driven to such a point as to not only consider ending his own life but acting on it? I suspect that even with all of the enquiries that will follow, no-one will get an adequate answer. The only person that could shed any light on that would be Gary himself.

I’ve written about the fact that I suffer from depression before. This may be the overwhelming reason why I feel such empathy with Gary Speed – the idea that despite the differences in our lives and lifestyles, he could be me and I could be him. I’m somewhat ashamed to say that I know how it feels for my mood to shift radically from relatively happy to extremely despondent in a short space of time. I’ve thrashed this post around in my head for a good couple of months now; as to whether I should tell you one of the darkest secrets I carry. Because, to me, it’s shameful. I don’t want to write it in a search for sympathy for myself but if I don’t include it here then I’d be doing myself a disservice, and, in a way, to Gary Speed as well. Here goes.

I have, in the past, felt so low as to actually consider that ending my life was the best way out of how I was feeling. I’d even planned a way of doing it that required no equipment. A river ran near my house and, since I couldn’t swim, I thought it would be easy to walk into the river, keep walking and that would be that. See? When you put it into a sentence, it doesn’t seem much, does it? 29 words and a life is gone. That thought bounced about in my head for months. It popped up at work, during the night, on the bus, everywhere. I cried more than I thought was possible when it appeared because I felt I’d not got the courage to go through with it, and not enough courage to carry on living the life I was in. I was a mess.

That was 10 years ago. What stopped me was meeting MW, and leaving a house and relationship which was abusive. Now, I find myself in dark places on a regular basis because of a different trigger. I’m sure I don’t need to spell out what the triggers are now. If you’ve read this blog, I hope you have the intellectual and emotional capacity to try to imagine what they are, and what the consequences might be of dwelling on those triggers for hours on end. The shifts in mood I experience now are still as strong and as sudden as 10 years ago. And it frightens me because, although I still have some scraps of courage to call upon to keep going, I know that there is a breaking point when a person might think that enough is enough.

Which brings me back to my Twitter friends and Gary Speed. Following Gary’s death, distasteful comments were rife on social media sites. My Twitter friends have received the most appalling comments ridiculing their publicly admitted mental health issues. It’s well documented that mental health issues are treated with scepticism or, worse, with disdain and ridicule. I could go on at length about the rights and wrongs of this attitude but that’s for another time. For now, it’s enough for me to say that each of us should think before we blithely make light of such a serious subject. It might save a life.

I’ll finish by paraphrasing a line from a BBC drama, Garrow’s Law, which seemed rather poignant as it was broadcast around the time of Gary Speed’s death. It seems rather appropriate.

Gary Speed has gone. When a good man dies, so much dies with him. Not the goodness, I hope – we have great need of that here. We, who have held him in such respect and regard, should demonstrate it now.

Help? Who needs it? We do!!!

(Note: from here on in, I will refer to my wife as MW. Just because it’s easier for me to write here using this abbreviation. I’m not going to give you her name because she doesn’t write here and I feel it’s unfair. You’ll have to make do with MW. Remember this, I’ll be testing you in the future)

OK, I’ve sufficiently recovered my equilibrium to write about what’s angered me over the past few days. The care company that helps MW called to perform an assessment last week. I was honest with the assessor in MW’s needs and told her of the difficulties I face in getting her ready for the day, taking her to the toilet at least 10 times a day, and getting her into bed. The assessor made lots of sympathetic noises and said lots of supportive things while filling in what seemed to be a Domesday Book of a form.

Imagine my surprise when, on Saturday, the care-worker arrived with a fresh text message and a confused expression on her face. She’s been told that under no circumstances is she (or any other care-worker) to assist me in lifting MW at all. This is a bit of a blow. I’m pretty pissed off but a call to my social worker confirms that the care-workers aren’t supposed to help me lift MW. It’s for their health and safety…. mine is something else entirely.

The 45mins/hour in a morning when I get assistance with “lifts” and showering, etc is a boon. Now, most of this assistance is taken away. Now, the care-worker will only make breakfast, shower MW, and help put on continence pants and dressing-gown. I say “only” – this is, of course, some assistance – but the main help ( and therefore the main break ) I was getting was in lifting MW out of bed and around the house until she was in her electric reclining chair in the front room. The social worker asked if care was given to MW while she was in bed. So, in their estimation, it has come to this – being bed bound. Well, screw that. I may rail against Multiple Sclerosis, I may utterly loathe and despise the circumstances that life has provided to the point where I want to flee screaming; but I’ll bloody well get her out of bed. We feel – OK, I feel – very let down.

Further conversations with social worker brings much talk of hoping for movement on re-housing but nothing else in terms of actual practical help. The subject of a short break is again raised but that’s been covered elsewhere on this blog. Can anyone tell me the point of a social services that cares more for the welfare of those tasked to help us than the people they’re trying to help?

It’s NOT better to burn out…

It’s been a hell of a week. Some friends came to visit last weekend so I took them back to the airport on Monday. I was very sad to see them go – tears at departure and all that. Then straight home to get my wife dressed and ready for her recreation time. It’s becoming increasingly difficult to lift her as her weight is deadweight because she can’t feel her legs, let alone move or use them. Still no prospect of a hoist on the horizon.

Woke up on Tuesday with a pain in my chest. A visit to the doctor and I’m diagnosed as having a muscle strain. It makes my “lifts” painful to do. And I’m ITCHING to get back to my exercises.

Yesterday, I’d pretty much reached tether’s end. I was having another secret weep in the kitchen and I was all set for opening the door, running away and not looking back. I was tired, fed up, and in desperate need of a break. A proper break – proper respite. Not a couple of hours here and there. A rest.

I had an hour with a counsellor yesterday afternoon ( a coincidental appointment ) and felt a little more relaxed at the end of it. I’ve also been able to chat with friends on Twitter, whose help and support has been invaluable.

I am now talking to my wife about the prospect of her taking some time in residential respite. And it can’t come a moment too soon.

A small update.

It feels like ages since my last post. Sorry about the dust in the corners….

I’ve no long diatribe for you. I’ve just been busy. My wife is due to get a supra-pubic catheter. This is because her bladder is contracting when it shouldn’t, and not contracting when it should. The consultant has said that as this could lead to kidney problems, the best course of action is to address it with an “always-open” catheter. A permanent one. So, the wait begins for an operation date – probably sometime in the next two months. I accept that this will help alleviate a risk ( it won’t necessarily make things easier ) but I can’t help having the nagging feeling that it’s more evidence that this disease is having an increasingly dehumanising effect.

A couple of years ago, I’d have been angrier at this than I am. Now, whilst worried about the risks of the operation, I’m merely resigned to this latest development. Maybe it’s the medication that’s helping me keep my anger under wraps. Maybe, it’s a sign of how I now view things. Either way, my over-riding feeling is one of sadness.

It’s all in the mind.

Having had a week with barely anything to say here, I now find my burning issue – mental health. This is mainly due to the news of the untimely death of Amy Winehouse, which has seen her battles with depression and addictions get picked over by the traditional media ( and by all-and-sundry on various social media outlets ) with alarming alacrity. But there have been other instances where mental health issues, including depression, have been mentioned – like the initiative to promote mental health awareness in rugby league.

It’s as though everyone who’s had a negative opinion about Ms. Winehouse has been waiting for this moment to happen so they can wade in with ill-timed and poorly judged comments about her life. Ms. Winehouse had her problems with addictions too. I don’t and haven’t. I don’t feel I can speak about this intelligently and I’m certainly not going to guess. But it’s the danger of the stark scrutiny of a sufferer’s life and lifestyle that makes those affected by depression shy away from revealing that they have problems. And that they need help. It’s the fear that you’ll be mocked, ridiculed, or worse that stops you from saying something to even the most trusted among your family and friends. It’s the assumption that no-one will understand what you’re talking about and will trivialize it or ostracise you that keeps you quiet. I have my own experiences with depression. I believe this is a common theme with carers. The pressures and stresses of being a carer can make life impossible to bear. Even now, until this post exposes me, I’ve tended to keep quiet about my “dirty little secret”. I find it embarrassing to discuss – shameful even – because I don’t know what kind of reception I’ll receive when I open up.

I wrote about the forms PHQ9 and GAD7 in my post “Wait! What? What Just Happened…..?” . I fill one of these forms in every couple of weeks or so. Depression has blighted my life at various points in my life. I’ve had feelings of very low self-worth from being a kid, but had no idea what it was or where they came from. I was classed by my ( then ) GP as being “highly strung” ( whatever that means ). About 10 years ago, I was in an abusive relationship and was desperate for a way out. But I didn’t want to fight violence with violence which made my frustration with life (and depression) worse. And now, as a carer, I am struck with depression again. I know the feeling of being so utterly despondent that the idea of committing suicide becomes appealing. That my life is completely empty with no hope of ever having anything to look forward to. That I’m a total failure at everything and therefore not deserving of the good things that other people seem to take for granted in their lives. That it would be better for everyone if I was no longer here. These are not the transient thoughts and feelings of someone who’s a bit sad. They’re the result of sleepless nights. Thinking about your life and its problems over and over again and reaching some very dark conclusions. I’ve felt like crying in the most inappropriate places, at the most inappropriate times.

It wasn’t until directly after my first panic attack – that I wrote about a while ago – that I started getting help. Thanks to two GPs, my previous one and my current one, I’ve been able to open up about it all. I’ve now been taking anti-depressants for 4 years. I’ve had some counselling sessions and I’m waiting for an appointment for more. But the catalyst for me to realise the severity of what I was feeling was being able to talk to someone openly. Someone who wasn’t going to tell me to “pull myself together”. Someone who wasn’t going to pick my life apart and make sweeping judgements about me. I hope, now you’ve read this, that you don’t think of me any differently now you know my “dirty little secret”. Because, to be able to reach out for help with a peace of mind, sufferers need other people to have an OPEN mind. Depression can affect ANYONE. Without this understanding, I fear there will be more untimely deaths. And that would indeed be a tragedy.

Not much to say at the moment. So here’s a gratuitous video of Debbie Harry with Blondie.

Another random fact: Debbie Harry was my first crush.

(Source: https://www.youtube.com/)

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.