I'm Simon. I was the husband and carer of a woman with progressive Multiple Sclerosis. Warning: very blunt and frank content.
Healthcare worker/careworker/social worker/anybody: “What do you want us to do re: YW?”
What do I want you to do? HOW THE FUCK DO I KNOW WHAT TO DO?!?! This is what I’m looking at you for. A bit of guidance, share some of the load. Not bounce the issue back to me.
I’m tired of all the responsibility.
Following on from the last post, and those fears I touched upon, I had a conversation with my GP. He’s not just *my* GP.
Out of the blue, he asked me a question that made me freeze a bit. He wasn’t being cruel. Just realistic. He said he recognised the bluntness of what he was saying. The conversation was vague but it’s out there now.
(Warning: long read. If you’re a TL;DR type, now’s your chance to quietly fuck off.)
I originally put a version of this post out in a quiet part of the internet that nobody ever sees, and certainly isn’t connected to this blog. That’s because the subject is so personal – even a bit shameful – and I was scared that someone who knew me would read it. I’ve become adept at keeping a bit of a shield between me and this blog. I’ll occasionally link to here from Twitter but never the other way round. It’s safer that way.
So, why am I posting this here now? It’s not going to change anything, is it? It’s that, frankly, I’ve had enough of hiding it. Of holding it in and trying to swallow the hurt. Because I’m hoping that catharsis will bring some kind of relief. This is what you get told by counsellors, talk about it. I can’t talk to MW about it. I just can’t. Primarily, the pain. Secondly, MS has slowly taken, and continues to take, her mind and her memory. Often, talking to her is like explaining things to a child. Reason enough. This would be a pain too far.
But I still feel this way. I have cared for MW since her diagnosis over ten years ago. This blog has gone a little way to allow me to express my feelings and thoughts. You might argue that this post is long overdue. You might be right. I hope you understand why I’ve kept it to myself for so long. Despite the fact that MW and I spend almost 24 hours a day together, I feel so, so lonely.
MW is predominantly immobile, can’t feed herself, can’t control her bodily functions, is partially blind; this disease has robbed her of almost everything. This is pain enough for her. To raise this subject with her would be too much. She’d feel like what’s left of her world is being taken away. I know I would. I know she would, too. You get to know this about a person. The disease and its effects scare me and make me feel like I’m in permanent mourning.
However, I’m only 44. I’m not so old as to be content being more a carer than a husband – despite the title of this blog. I’m still a man, a human being. I’m not a machine. I still want…no, I still need real love, sex, intimacy, kisses, the touch of a woman who is in love with me as I with her. A lovers’ relationship rather than one as carer and patient, brother and sister, father/daughter, the closest of friends, you choose which term is appropriate. I still have fantasies. Trust me, I’m no prude, I have an imagination. I’m not easily shockable. But those fantasies might as well be just a silent film in my head. There’s no outlet.
So, what does someone in this position do? Leave? “Yeah, I know it’s not your fault. I know you’re all vulnerable and stuff, and reliant on me, but I’ll be away now. It’s not you, it’s me” I know MW would be devastated to hear that. No matter how ‘right’ that might be. It would push her to do something stupid. I know. She told me once in an unrelated conversation. Plus, what kind of arsehole would do that to someone so vulnerable? This isn’t her fault. She never wanted this shit in her life. Neither of us did. She can’t do anything about it. How can I make her feel like less than a person? It’s not fair. There is still a love between us, even if it’s not the same kind of love as ten years ago. That love has changed irrevocably. I have my memories. Memories of laughter, those glances between lovers, walking hand in hand, weekends cuddled up together. I remember all those things.
But today, it’s all just history. Memories that seem like the yellowing pages of an old storybook. I know fine well that the same thing is happening to MW. She misses the touch of a husband, of a man who loves her in a way that she wants to be loved. Only it’s not possible now. It’s not a psychosomatic thing, it’s no longer physically possible. And neither of us can change anything. No matter how much we want to. What can I do? Let me turn this around. What would you do in this position?
Meanwhile, my tears are getting bigger. Hidden, obviously. Like I hide a lot of things. Anyway, I’ve written it now. Wade in to me if you want to. Go for your life. I don’t care anymore. I can’t hold it in any longer.
I’m not kidding, I am knackered. Fucked. I need a break. I’m constantly on edge, checking several times that everything’s OK.
Be nice to be checked on myself every once in a while.
We took MW to see her family again. When I say ‘we’, I mean my Mum and I. It was MW’s Dad’s birthday while we were there. He’s been fighting leukaemia for a while, now. To tell you the truth, we’re surprised that his fight is still on-going. We were given a prognosis for him that included a finite amount of time. Therefore, each celebration – birthday, Christmas, etc. – always carried the possibility of being his last.
This is not to say that MW didn’t enjoy seeing her Mum and brother, too. She misses all of her family. Her Mum does all the caring for her Dad, and can’t come to see us.
Although I may have said the same after the last visit, this may well be the last time we do this trip. Five days’ of travelling and care with only the most basic of equipment have left their mark. My Mum is in her late seventies and her health is deteriorating, too. I can’t ask her to keep running around as my assistant whenever I get the urge to do this.
Also, I’m afraid that, as MW gets weaker and weaker, I won’t be able to lift her in the same way as I’ve been able to do. As she’s losing core strength, I’m losing the ability to control each lift. I don’t want there to be an accident that could be avoided.
It was good for them all to see each other. There were a few tears, both on arrival and when leaving. But, for five days, MW felt like she was part of her family again. And I’m glad she did.
One thing that MW is known for among her family, her friends, her carers, etc. is her hair. Despite being older than me, her hair is still naturally very dark. It’s one of the traits that leads people to believe that she’s younger than she is.
This morning, I’ve noticed she seems to have more grey hair than usual. I don’t know if the way the morning light was shining on her gave the impression of more grey or if it’s a real change. Either way, it seemed to make her appear more fragile. And she looks fragile enough without losing this last bit of her youthfulness.
I look back a lot – look back to How Things Were Before MS. Thing is, the longer I’m so concentrated in making sure the present doesn’t get out of hand, the harder it is to remember those pre-MS memories.
I’ve written before that, because I’m with MW pretty much all of the time, I tend not to recognise the major changes in her until there’s a catalyst event to make it obvious to me. By major changes, I mean things like no longer being able to walk, needing to be fed, moving from being singly to doubly incontinent, etc. This isn’t an exhaustive list but I hope you get what I mean.
MW had been pencilled in for an electric wheelchair test in early 2014. That had to be continually postponed because she was confined to bed with a horrific pressure sore. The sore has healed to the point where the test could go ahead. MW was using the prospect of an electric wheelchair as something to look forward to whilst in bed. So, this March, we went along to the test centre. MW couldn’t use any of the demonstration chairs as there were none with enough body/head support. The Occupational Therapist (OT) asked questions and took notes on MW’s condition, symptoms, and (dis)abilities, while the rep from the chair supplier talked to us (that is, to me) about the chair’s capabilities.
During these conversations, it became apparent that MW now has serious issues with arm movement. She has practically zero movement in her right arm – thus couldn’t control an electric wheelchair with this hand. She has slightly more movement in her left arm but, again, it’s severely limited. I don’t think MW could control an electric wheelchair. The supplier rep showed me the attendant control and took me through a test, which I went along with. However, I couldn’t help but think it was pointless. If MW can’t use an electric wheelchair independently, it becomes a useless exercise. The possibility of some independence is the whole point of using an electric wheelchair, isn’t it? A further test would take place in 12 weeks with a properly supported chair.
A couple of weeks ago, the chair was delivered and we had the second trial. The controls were moved, I lifted MW into the chair, and the supports were adjusted. The trial was on. Only, MW’s left arm wasn’t going to be up to the task. We got it to reach the control but all that happened was that her arm clenched (due to spasm) and pulled the control to the right, moving the chair in a circle. There were some looks shared between the OT (a different OT, this time), the (same) supplier rep, and me. We all knew the truth of the situation – that MW was past the stage where an electric wheelchair would be suitable – but who was going to be the one to say anything? The OT gave an option for moving the controls to a more central position and suggested a further trial. Fair enough. Might as well exhaust everything before acknowledging the inevitable.
I haven’t actually got a point to this, other than realising that MW can’t move her arms at all any more. She can no longer hug me as her arms are usually crossed in front of her torso- all hugs are one way affairs. As I say, it takes a catalyst event for me to realise the extent of changes to MW’s body and abilities. And not only for me. MW’s been pretty quiet since this second wheelchair test. I ask if she’s OK or if anything’s wrong, and all I get is a reflex response of “Yes, I’m fine. Are you alright?”. Which doesn’t help.
Her quietness could also be a result of getting sick of me refusing to believe her when she tells me there are ‘creatures’ that cause her pain in various areas of her pelvic region. There are no creatures. This is ‘formication’ or ‘parasthesia’ – call it what you will – and, according to the MS specialist nurse, “there’s nothing we can do”. I’m going to wait until the neurologist appointment later this month to confirm that.
Or her quietness could just be due to the summer. The heat is making her lethargic and wanting to sleep more. What I do know is that we’re both realising that she’s losing more and more of herself to MS. We expect this. Nevertheless, you get so caught up in micro-managing the symptoms that the effects of the disease get missed, and it needs a prompt to realise just what the full picture is.
So, we’ve just been to see MW’s parents. In particular, her Dad. He’s been fighting leukaemia for the past couple of years and can’t get up to see her. MW’s Mum looks after him as I do their daughter. They’ve not seen each other for over 18 months. I hope this is not the last time they see each other. We don’t know whether MW’s Dad will take a sudden turn for the worse – as has happened before. I do know that MW’s MS will deteriorate further. She coped as best she could while we were away, with only me and my Mum to care for her, with no equipment, but there’s a limit to what she can endure. It’s not easy for her to put up with 9/10 hour drives and not having the correct kit to keep her safe.
It was tough for her to endure and hard work to make happen.
But worth it.
The Fear. I hate The Fear. I have The Fear now and I don’t know what to do about it. More accurately, I don’t know what to do about what’s causing The Fear. So, as famous people take to Twitter, I’m taking to Tumblr in a bid to make sense of it all in my head. You can have a read, if you like.
MW is in hospital. She was taken in on Friday with a temperature of 39.8, rapid breathing, and a lot of confusion. The district nurse who saw her said she’d be better off in hospital where she could be given IV antibiotics. Tests showed another UTI, and two patches of what appeared, to the doctor, like cellulitis (which is new to MW). I’ve seen her in some states thanks to MS but this seems different. She seems more distant, more disorientated. As I’ve written before, MW has shown signs of dementia-like cognitive impairment – memory lapses, confusion, and so on. I know that infections will exacerbate any pre-existing cognitive impairing. It’s just that she seems so frail along with it. I was feeding her a bun and a drink tonight and had to remind her to swallow. She didn’t seem to know that I was trying to give her some food/drink, even though she’d agreed to have them. I don’t know what part of this is due to the infection (presumably reversible with medication and care), what is caused by the MS (more damaging and potentially more permanent), or whether it’s a mixture of the two (and will that part caused by the temporary infection become a more permanent part of her MS). Frustration leads to attempted rationalisation of what’s going on, which leads to The Fear.
MW was asking about her Mum coming to visit her, so I explained why she couldn’t. We live at the opposite end of the country from her parents, but it’s mostly due to her Dad being ill and that her Mum cares for him. This is not news to MW but tonight she seemed to get quite upset by it, which is very unlike her. She normally understands the situation surrounding her Dad, yet it was as though she’d forgotten all about it. I told her that her Dad’s very ill, which seemed to upset her. I tried as best I could to put a positive slant on things, telling her that they’re doing their best and that they’re winning but she still looked quite teary. I was telling her that she was winning too and that we’d get her right, and back home – trying to instil a spark of determination in her – which seemed to work. In truth, I was trying to blink back my own tears.
Which brings me to The Fear. I have the fear of losing her. Not just in the sense of her not being the same person as she once was – mentally, I mean. But also losing her physically, really losing her. Dying. A feeling not helped by the nurses performing ECGs on her due to a raised heart rate. With it being Easter, and staffing levels being low, there was no doctor around tonight to ask for an opinion or to ask to expand on their reasoning behind the tests. The nurses are asked to do the tests, not to evaluate the results and explain them to an anxious husband. I came away from the hospital at end of visiting time feeling very uneasy.
So, I’m lying here at gone 2 a.m., watching fuck-knows-what on TV, trying to make sense of it all (getting more frustrated by the minute that I can’t contact the MS specialist nurse for another 36 hours at the earliest – thanks a bunch, Easter), and trying to keep The Fear away. I know where The Fear leads if unchecked – panic attacks, anxiety, deep depression. And I really have The Fear of The Fear.
A Husband For A Carer 