Tag: husband

A year’s grief: felt and observed

It’s coming up to a year since Trisha died.  I still have problems saying those words.  They still catch in the throat as they make their way out, and part of my brain wants to force my mouth to change the words to something less direct; to use one of the popular euphemisms we often use to describe someone’s death: ‘since Trisha passed away’ or ‘since I lost her’.  Each of those is technically true, but they lack the force of what hit me on 30th October 2017.

To me, grief feels imposing and, at times, insurmountable.  It feels like eternity since I was able to put my arms around Trisha and feel her, still alive; since she was able to stimulate my actual senses and not just my memory. Yet, simultaneously, it’s only five minutes since I was in her hospice room, sitting at her bedside and stroking her hair in fits of grieving tears.  I have to admit that I’m struggling with it.

The intervening months have been, to employ an overused phrase, a rollercoaster of emotions.  Only this rollercoaster constantly shifts its shape.  It’s mostly flat – which is me trying to keep busy with day-to-day life and ignore my feelings – but there are undulations of varying height and gradient, and I never have any warning of when I’m going to meet one.  The highs are rare, but so very welcome.  The lows are more common than I’d like or care to admit and can be pretty deep.

I’ve watched films, in particular those with characters who are widowed, that portray bereavement as a series of heavy sighs and benign smiles at the thought of their loved one.  That doesn’t seem to be where I am.  I’ve also read a load of books on grief, loss and significant life change.  I’m searching for clues in other people’s experiences, so I can find the answer to my own problem.

I’m looking for the ‘right way’ to cope and to find out where I am on the Gantt chart of grief.  I haven’t found either.  It’s taken me this long to figure out that there is no ‘right way to grieve’, there is no linear progression for grief.  Grief is a scribble that has a definite beginning point but has no discernable end. The only variables are the thickness, depth and intensity of the line.

I’m surrounded by Trisha’s things or reminders of her: her pillow, untouched since it came back from the hospice; her bag containing her hair dryer, hairbrushes and other stuff; her ashes, in the front room, are still in the funeral director’s bag they came in, only now they have just-shy-of-12 months’ worth of dust on them.  They’ve all assumed sacred relic status.

I’ve started painting again.  The thing is that every canvas is inspired by Trisha or by loss.  I have photos of her all over the front room, I have a study of her that I painted years ago, there’s another painting with her in it…I’m starting to worry that this isn’t healthy.  I think I’ve figured out why: I’m scared that I’ll forget her, or that the good memories that we had together are irretrievably tainted by the later memories where things aren’t so enjoyable.  I don’t trust myself not to forget, and I couldn’t forgive myself if I did.

If you’ve read this blog for any length of time, you’ll have seen the post, ‘D-Notice on the D-Word’, about a friend who passed away due to MS.  I started thinking then that Trisha’s MS would ultimately be too much for her, but I never thought that I’d be right.  Rather, I hoped I’d be wrong.  When the MS nurse told me that nothing more could be done, I still wasn’t prepared for the prospect of her dying.  No matter what anyone said or demonstrated, seeing Trisha lying lifeless in a hospice bed – albeit free from pain and having received the best care she could have been given – was horrifying.

Trisha’s death has left an enormous hole in my life.  She was diagnosed with MS three months after we were married and suffered with it for twelve years until she died.  I wasn’t just her husband.  I was her carer for the whole time.  A role I didn’t apply for; I became Trisha’s carer because she needed help right from the onset of her symptoms.  For twelve years, we spent practically all day, every day together, with few breaks. It’s not surprising that I feel lost now she’s gone.  As C. S. Lewis wrote of his wife, H., in his book ‘A Grief Observed’: “Her absence is like the sky, spread over everything”.

In short: I miss her.  And I’m lonely.  This shouldn’t come as a surprise, but I can only now say it out loud.

I’ve recently re-discovered Dire Straits’ ‘Alchemy’ album, a throwback to my teenage years in the 80s when I listened to it on tape.  Despite not having listened to it for years, one track now makes me cry when I hear it: Tunnel of Love.  Particularly, the lyrics, “…Girl, it looks so pretty to me, like it always did.  Like the Spanish City to me, when we were kids…”.  It makes me feel like the character singing the song is reminiscing about a time when he and a girlfriend were younger and had everything ahead of them. Thinking of a life that could have been, but never was.

It makes me think of Trisha, every time.  Back in the early days of our relationship, we’d look forward to a future together. One that included all the things that many families dream of: kids, own home, dog, stuff like that.  All I can do now is think of the life that could have been for Trisha, for us as a couple, but never was.  I still have the possibility of a future that Trisha can’t have. And that hurts, too.  I feel guilty that I can do it and she can’t.  I feel undeserving of the opportunity, and, connected to it, undeserving of help in coping (which, I’ve recently discovered, is why I don’t ask for help).  Because I’m still here and she’s not.

Even though a year has gone by, I’m still in the early stages of grief.  Maybe, when my most severe reaction is a heavy sigh and a benign smile when remembering good times with Trisha, it’ll feel like eternity since I was distraught at her bedside.  And the sky that stretches over everything will be my future.  Whilst everything still seems so unfair now, that’s a hope worth holding on to.

Belonging

 

“Three of these kids belong together, three of these kids are kinda the same.  But one of these kids is doing his own thing, now it’s time to play our game…it’s time to play or game.   Can you guess which kid is doing his own thing?”

I’m not one of the kids who belong together any more.  When Trisha was still here, our ‘tribe’ shifted regularly for years, sometimes by our instigation, moving house/area, but mostly without us wanting it to.  Now Trisha’s gone, I get the feeling my tribe is shifting again.

When Trisha was diagnosed, we were shifted out of our tribe.  The wider group of people we associated with moved on as our lives diverged: we weren’t having children, we could no longer buy a house so house prices were nothing to do with us, we no longer had careers to tend.  Our lives became run by MS and our topics of conversation were about medical tests, symptoms, treatments, care management, knowing the location of the nearest accessible toilet, wondering whether urine will come out of those trousers, the cost of dry cleaning, and so on.  The good friends stayed but a lot shifted us along.

We shifted to people affected by MS, whether they be sufferers and their families/friends, carers, and so on.  We’d go to MS Society branch lunches/coffee mornings in York, South Cumbria and the North East.  Symptom sandwiches were washed down by a cup of shared care concerns and tales of embarrassing lapses in bodily control.  As Trisha’s MS progressed, we’d have less in common again with the people going to branch events.  It’s frightening to see someone deteriorate from the disease you have.  Particularly when the statistics say that, one day, you’re likely to be in a similar position.  When you’re the worst affected person in the room, as Trisha was, you know you don’t really fit any more.

Even with progressive diseases, you do come across people who are in a similar position to you.  Your tribe becomes smaller but they’re there.  You all get what it’s like to sleep with one ear and eye open.  You all get frustrated by officialdom’s increasing lack of understanding for your challenging circumstances.  You all share the same worries about the future that none of you have or can plan for.  You all hate the state you’re in but fear the alternative.  It’s a long and stressful tightrope to walk.  I fell off.

When Trisha died, I stopped being a carer.  When I talk to people who are still caring for loved ones with MS, I can sense a subtle shift in the dynamic.  I’m not saying I’m being shifted, far from it, these people are dear to me.  I’m just becoming very aware that my position has changed.  Whilst I have the history of being a carer, I’ve moved from that to somewhere else.  I’m the widower of an MS sufferer who died.  It’s a completely different place.  I no longer have to watch a loved one suffer, juggle the constant demands of being a spouse and carer or worry for the future of someone who depends on me entirely.

I’m free of those feelings now.  Others have taken their place.  I miss Trisha, I grieve the life we had, especially in the early days we were together, pre-MS.  I even miss the later, crap years.  It’d mean she’s still here.  I’d still have a greater sense of certainty of who I am or, at least, what role I had.  I guess my natural ‘tribe’ is different now.  I’m not trying to replace those who’ve stuck with me throughout, I’m trying to add to them.  I’m a widower without children: I have a new title, a new role in life, even though I don’t really know who I am.  (As an aside, is it just me or, when you look at how the death of a spouse is covered in the media, does grief only really count when the couple have children?  Is my grief as a non-parent somehow lesser than the grief of a widow/er with children?  We’re people too, you know?  We loved, we lost, we hurt.  But I digress. Again.)

So, here I am, still figuring out where I sit in the grand scheme of things.  The upside-down kid among the right way up kids.

Yesterday would have been our wedding anniversary.  I remember, right from when we first got together, things being very stressful – especially her divorce and my court case.  Trisha would say to me that all she wanted was for me to hold her and tell her it was all going to be OK.  Which I did.  Then and many times during our years together.

Right now, I’d like to be held and told that it’s all going to be OK.

Oh, well.

It’s been four weeks since you had any food, yet I’m absolutely astonished by your resilience.  I don’t know how you still have the strength to open your eyes.

I can’t help but assume that this is going to be a long, drawn-out decline.  And I’m undecided whether this is a blessing or a curse.  I can’t let you go but I hate seeing you suffer.  We’re on your time now, sweetheart.  I’ll take as much time as you want to give me.

The first rule.

The first rule of (Not Being A) Dad Club is that you never talk about (Not Being A) Dad Club.

Did you know it was Father’s Day this weekend?  Every shop you see has some Father’s Day angle or other. It’s on TV – adverts and programme spots -, in magazines, newspaper sites, all over social media. It’s everywhere. Tonight, MW said, apropos of not very much, that she’d like a child “even at 50”. Yeah, I’d have liked a family, too. It can’t happen though. And that hurts.

Long time readers here will know that my Dad died before MW was diagnosed with MS (Father’s Day is the same week as his birthday). MW’s Dad died earlier this year and we don’t have children. So, Father’s Day no longer applies in this house. It’s a closed shop – a club that I’m not a member of anymore. And won’t be. I might have written about this before and I might write about it again. Because it crops up every year, and I don’t remember what I’ve written before. And I’m not about to go trawling through to check.

One of the things that parenthood inspires is the thought of the future; that a) your family is continued, and b) gives you reason to look forward, with the assumption that you’ll have your children around you as you get older. That you won’t be alone in your advancing years – not necessarily from a practical perspective but from an emotional one. I can’t lie, the idea of being alone as I get older isn’t one I relish.

By alone, I mean absolutely alone. My mother is nearly 80 (don’t tell her I told you! She doesn’t know this exists.) and, as active as she is, I can’t assume that her health won’t deteriorate. I assume, as nature generally goes, I’ll outlive her. And the odds that MW and I will, at some point, no longer live in the same house seem to be getting shorter and shorter. I don’t begrudge others their happiness with their family. That’s not fair. I just feel wistful. Sad. Scared. Uncertain. A mind full of what if’s. And jealous. A real envy that my life has taken this path and not the one I’d set out for myself in my formative years. When I was actually thinking about the future and not busy obsessing over records or furiously obsessing over photos of Beatrice Dalle and Michelle Pfeiffer.

Actually, this time of obsession was the closest I’ve come to being a Dad. My first girlfriend unexpectedly fell pregnant and decided to have a termination. In the aftermath, I assumed that I’d have a family of my own “at the right time”. Obviously, I had no idea how things would pan out. I lost contact with her years ago but I do know that she went on to have a family of her own. I didn’t know whether to include this piece of information but I’ve written about it before, so I suppose there’s no real reason to leave it out. As I look back, I don’t really know what I’m supposed to feel about this now – shame? bitterness? regret? I don’t know. But it does hurt.

I guess it’s the same jealousy and wistfulness that seems to hit MW when she has a more responsive moment and says that she laments not being a mother. I used to think that Father’s Day card and gift buying was a bit of a bind. Because it coincided with his birthday, I’d have to do twice the spending. Our relationship wasn’t great (to massively understate the case), so I thought the cash could be better used on more exciting – and obsessive – stuff.

I get it now. I get what it’s supposed to be. It’s supposed to be a celebration of being part of a family. And the cards in the shops are a reminder of a club that I’ve joined against my will. (Not Being A) Dad Club. A reminder of a past that’s gone and a future that never will be. But if I have to be a member of this club, I’m bloody well going to talk about it. A bit.

Responsibility

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.

My heart, laid bare.

(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.

Missing the bigger picture.

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.