Tag: caregiver

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.

So this is Christmas.

So this is Christmas….and how are you getting on?

There’s a train of thought that says the grief that follows the death of a spouse should be kept personal.  Which is a shorthand for the fact that a lot of people can’t or don’t want to deal with the feelings of the widowed (or bereaved, in general).  Or they don’t want to hear that it’s not a clean, upward curve of ‘getting over it’ but a messy splodge of scrabbling around, trying to make sense of what’s happened whilst, at the same time, trying to find some idea of what your future’s going to be.  But people keep asking.

The real meaning behind the question is like the real meaning of Christmas: it differs, depending on the individual.  They range from “I’m genuinely interested and I’m ready for whatever reaction you have” via “I care and hope you’re not doing badly but please don’t break down because I have no idea what to say or do” to the rictus-grinned “I’m only being polite. I’m really looking to reinforce my own feelings and skirt over yours. Don’t you fucking dare bring me down”.

After years of fielding questions about Trisha’s health deteriorating, you quickly learn to spot which is which.  Most people fall into the middle category, which I can understand.  There are some notable and very much appreciated exceptions who come into the first category.  The latter category is quite easy to deal with, barring the good actors who’ve had a bit of a shock but, frankly, they get what they deserve.

So, how am I getting on?  Shit, really.  I keep searching for ways to cope – reading books and watching films about bereaved spouses to see if there are any clues I can glean.  Some are helpful, others offer an excuse for a good weep and a wallow (Mum’s List – Rafe Spall is very, very good).  I know, I know – I don’t need an excuse beyond what’s happened.  The films provide cover.

I’m not feeling festive.  Trisha left 9 weeks ago on Christmas Day.  She absolutely loved Christmas but it feels empty without her.  I’m sure anyone who is experiencing or has experienced the first Christmas after bereavement has a similar feeling, even if it varies in intensity.  I’ve put a few decorations up but it’s been a real effort.  And if I hear Mud’s “Lonely This Christmas” one more time, I am going to let it all out and everyone will just have to cope with it.

I’m tired of the fake smile.  I’m tired of trying to keep up in the jollity stakes.  Being surrounded by TV and other media images of happy couples and smiling families is particularly hard when mine is shattered.  Despite having my mother with me for the past couple of months, I still feel very, very lonely.  It’s not easy continually holding back tears.  Which probably explains the sleeplessness, panic attacks and periodic meltdowns.  Luckily, they’ve only happened at home.

This is not to say that it’s all darkness and shite.  I caught myself thinking about what kind of home I want to live in.  I don’t mean the bricks and mortar, but what I’d put inside.  What I’d put in differently from the furniture I have now.  What kind of environment I’d be happy to call home.  These are the first little bits of future-thought creeping into my head.  Despite them being tiny chinks of bright in comparison with what I’ve written about Christmas, they’re a start.  I’ll take that.

So this is Christmas, and this is how I’m getting on.  Let’s hope the New Year’s easier.  Than the one that’s just gone.

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.

How can you smile when I talk to you?  I mean, I’m glad you do: it’s a sign that you’re comfortable, not in pain or distress.  Despite what’s happening to you, your body failing you, you can still manage to move your lips into a slight smile.  You’re not even fully conscious, yet you seem to understand what’s going on around you enough to react with a smile.  At least, I like to think it’s a smile.

I smile.  I smile at you, obviously. Only, mine is a weak smile.  Not the full lights-up-your-face smile that you’ve always had.  That you’re known for by everybody.

These days are a kind of limbo.  Is it an adjustment period?  Are you being this calm so we have time to process and prepare for what’s coming?  That might prompt questions of spirituality.  A spirituality I don’t have.

All my rationality tells me is that you’re comfortable, not in pain and not distressed.  That this bastard of a disease that’s robbed you of absolutely everything is giving you an easier time at the end.  It owes you that much.

Her name is…

For the last 6 years, I’ve only referred to my wife here as MW. My cack-handed way of trying to offer her some kind of protection. Safety in anonymity, that sort of thing.  Given the prognosis, I don’t think it’s fair to continue referring to her as MW. She deserves to be called by her name.

Her name is Trisha.  We met in York and we’ve been together for nearly 16 years. First, we saw each other on the sly, she was married.  Her relationship was violent but she said she felt stuck in it.  Once she’d made sure I meant what I said when I told her I wanted to be with her (it took a lot of telling but it was worth it), she left her husband (no small feat but it didn’t end up being the morass we’d both feared – it could have gone horribly badly) and we found a little flat above a hairdressers that was our home until about a year after she was diagnosed and she could no longer manage the stairs.

A couple of years before Trisha was diagnosed, we went on holiday.  A two-week Caribbean cruise that took in some of the areas that have been hit recently by Hurricanes Irma, José and Maria.  I remember Antigua most of all.  We’d been on a sightseeing tour of the island and we’d been taken to a market area afterwards. A stall was selling the brightest sun dresses and Trisha had her eye on a couple of them – one white, one yellow.  For some reason, I had all our cash on me (insert something about the patriarchy here).  Trisha wanted to buy these dresses and was explaining to the stall owner that her boyfriend was away taking photos of something or other.

I was enjoying looking out to sea and just generally feeling relaxed and content when I heard the stall owner shouting.  She was pretty bloody loud, but she wasn’t shouting in anger and I wasn’t expecting her to be shouting me, so I didn’t pay much attention.

“Simon! SIMON! SIMON, WHERE ARE YOU? TRISH NEEDS YOU!!”

Embarrassed (mostly because the owner probably thought I was some kind of control freak), I ran over and gave Trisha the wad of cash, apologising profusely.  She bought them both and still has them.  Even now, we smile together as we remember that holiday and the woman shouting, “TRISH NEEDS YOU!!”.  Funny how some words stick in your mind, and how they gain meaning as time goes on.

A couple of numbers

Four thousand five hundred and seventy-two. That’s the number of days I’ve been providing care for MW in some form or other. Right from the first symptoms of her MS: a bit of a limp and eyesight problems. Back then, it was just guiding her around as much as I could. There have been many stages of gradual progression of symptoms.

The first year following diagnosis: coping with blackouts and begging her to eat because she stopped eating, thinking she’d get fat from being immobile. Dealing with her continence issues, including stopping a London – Edinburgh train at Doncaster so I could take MW to the disabled toilet and change her clothes, as there was no disabled toilet on the train and she’d had hot coffee spilt on her. Her gradual loss of mobility: lifting her in and out of cars, on and off beds, chairs, etc. Feeding her for the first time: an unsaid but mutually acknowledged sense of a loss of dignity.

There have been good times post-MS. My 40th birthday year. The year we went on holiday to Europe. We met friends and had fun gadding about the continent’s fashion capitals. Getting giddy because we were ushered past the velvet rope in the Louvre to get that bit closer to the Mona Lisa (one of the few advantages of being a wheelchair user). Having a private tour guide to show us around the Vatican and Sistine Chapel. Shopping together in Milan and the hotel’s delicious chicken sandwiches. My eyes get a little more misty each time I look at the photos. Of how things were.

One. The first. Today was the first day I told someone official that I can’t cope any more: I can’t keep going to the well of strength because it’s almost dry. MW is in hospital after her swallow became compromised. I couldn’t tell if fluids were going down properly or not. There was no evident deliberate swallow. She’s due to have a PEG tube fitted and that operation has been brought forward. The risks involved are scary: more so given MW’s progression.

This hospital admission has been the most upsetting because she seems so weak now. I think I’ve cried every day bar one. Tonight was rough. Her breathing rate was a real cause for concern as it had got so low. Every conversation seems to have that sombre tone – do you want us to resuscitate in the event of…?; do you want us to ring you during the night if her breathing rate falls below…? I can’t even bring myself to type the words.

Those of you who know me already know that I lost my Dad to cancer two months before MW and I were married and five months before her symptoms began. What you may not know is what happened when he died. I was all set to go across from where we lived to my parents because the Macmillan nurse had said things were getting towards the end and I’d said I wanted to be there. I’d also started with panic and anxiety symptoms and had a doctor’s appointment that same day. I’d travel across the next morning.

You’re probably way ahead of me already. I did travel across the following morning, thanks to a lift from a friend of my Dad’s (now no longer with us. Brian was one of the kindest, most selfless men I’ve ever had the privilege of knowing). A journey of 110 miles, give or take a mile or six. Twelve miles from their home, my mobile rang. He’d gone. I’d not seen him at the end. I got to their house to see his body lying in a hospital bed in their front room. Shock, sweet tea, grief.

Looking back, I preferred it happen that way. I couldn’t watch him take his final breath and go. I know I will have to be there when MW takes hers, whenever that will be. I know she needs the comfort. I know she needs the reassurance and love that we – her family and I – will provide. I’m just not ready for this to happen now. This deterioration just seems so sudden. There seems to have been no time at all between listening to her giggle with her Mum and a carer and seeing her in hospital, reduced to being made up of hourly observations, fluid balance chart, IV fluid intake rate…

This pretty much all boils down to me saying that it’s not fair. She doesn’t deserve this. Why her? Why does this thing keep making her worse? Why is it going to take her from me? Screaming won’t change anything, I know that. I’m scared. I’m struggling. People keep telling me that if I wasn’t this way, I’d not be human. It means I care. That being with her despite this also means I have strength. Somewhere, I know this – I just wish that strength didn’t hurt so much.

Wishes

Continuity announcer: “Next on Radio 4: more from the A Husband For A Carer series. Today’s episode: ‘Wishes’ – read by Tom Hardy” (What? I thought an A-lister might keep people interested.)

The conversation has started. The subject of “24/7 care in another setting” – not my choice of words – is out in the open. I keep being asked whether I’m prepared to carry on my role as informal carer. I don’t know. I really don’t know. It’s not just a question of my being prepared to do it. Is it in MW’s best interests? What if I’m not prepared to? What if me not continuing to care goes against MW’s wishes? Are my wishes more important? Do they carry more weight? What about the guilt if I stop? What will the future hold – either way?

The PEG nurse visited this week and spelled out the situation regarding the ins and outs – well, just the ins – of having the tube inserted. MW’s dystonia means any insertion would have to be carried out radiologically, i.e. by using x-ray guidance. Weak cough effort means she’s a sedation risk. Her cognitive impairment is a poor indicator for the PEG tube – “dementia patients don’t do well with PEGs”. Whilst MW does have some – and no real measurement has been made of just how much – cognitive impairment, she does still retain the capacity to communicate her wishes. There are four criteria set out by the Mental Capacity Act 2005 to measure an individual’s ability to make an informed decision regarding their own welfare:

• to understand the information relevant to the decision
• to retain the information relevant to the decision
• to use or weigh the information, or
• to communicate the decision (by any means)

MW is OK at numbers 1 and 4. Numbers 2 & 3 are a bit sketchy. This is the professional assessment of a nurse, not my hot take. There’s a sense that information is heard but not really understood to any great degree. There is a lot of information to be taken in about the PEG and whilst MW said that “if it helps, then it’s worth giving it a go”, I’m not at all sure she understands the risks connected to the procedure itself that were explained to her.

It’s the same with the conversation about care. I know she hears the words and she’s expressed her opinion but, again, I’m not sure whether hers is a rational decision or an instinctive, emotional one. She woke me up in the early hours of yesterday morning, panicked and shouting “I’M DYING! I’M DYING! I’M SWALLOWING SO MUCH SICK!!”. She’s woken up screaming many times before but this is the first time she’s shouted anything coherent. I comforted her and got her off to sleep again. This tells me that something’s playing on her mind but I don’t know what. When I asked her, later in the day, what had scared her, she couldn’t remember anything.

This could be the talk of care homes or the fact that recent conversations about her condition (conversations taking place around her as well as with her) have taken a very serious, almost sombre tone. Is she scared of going into a home? Or is she scared of dying? From a procedure or from the MS? When I ask her how she is, she replies with her usual “I’m fine”.

The memory loss and personality shift is so disturbing that I’ve stopped comparing today’s MW with the woman I met and married. Earlier this month, I had to remind her who I am and how we met. She also keeps asking if she’s lost her Dad (who died earlier this year), as though she’s just heard the news and is reliving the experience. Forgetting a bad dream/sequence of thoughts is one thing, forgetting important parts of life is another. She also shows a liking for things that the MW I knew would have hated and, frankly, would have taken the piss out of. There’s a kind of infantilisation occurring (that I’ve written about before) that has changed her completely. I just have to accept that MW is a totally different person now.

The care MW requires is no longer the same as it was before she went in hospital. It was probably not enough for her then. I now know what deterioration has occurred and what interventions are advised. It all feels so surreal. I feel like I’m drowning in responsibility. I just don’t know if I can safely deliver what’s required. Bear in mind that, carers aside, it’s just me. I see this vulnerable woman and I wonder if, after 12 years of caring for her since diagnosis, I’ve reached the limit of what I can do. Scared of making the tiniest error that may have far-reaching and devastating consequences. I already feel guilty because of how things have progressed (yes, I know, it’s not my fault. I know there’s nothing I could have done.). I couldn’t bear the guilt or the grief of getting something catastrophically wrong.

The conversation – and my swirling head – continues.

Crossroads

As often happens with this blog, I don’t really know what to write. I just feel the need to get something out of my head. Sometimes, it’s something that I’ve seen or heard that’s touched a nerve. Others are me trying to make some kind of sense out of the jumble of thoughts and feelings that swirl about me. This post is a result of the latter. I’ll warn you now, a lot’s happened in a short space of time. This is likely to be a very long read. Give it a while and it’ll be serialised over a week on Radio 4, read by an actor whose voice you recognise, but whose name you can’t quite place.

MW is in hospital with an infection. At least the fourth or fifth in a row. She’s been diagnosed as having a urinary tract infection (UTI). This is the risk you run with a suprapubic catheter – one that’s permanently inserted through your skin into your bladder. She’s needed a catheter for a few years now. UTIs come and go with, now nonchalant, regularity. These infections vary in severity – sometimes to the point of requiring an emergency ambulance. This was one of those times.

As I have been informed, MW is a sepsis risk and any time she passes little or no urine either through the catheter or by bypassing the catheter and urinating normally is a real cause for concern. Medical treatment is required immediately. We’d been giving MW oral antibiotics by the bucket recently but she didn’t seem to improve. Confusion and delirium, along with being overly sleepy and/or unresponsive, were the signs that something was definitely amiss.

What I wasn’t prepared for was the conversation I had with a specialist. The specialist. I’ve written before about how I don’t really notice deteriorations in MW’s condition – I see her all the time, so changes are too small to take in – it’s only when there’s a catalyst event that it all makes sense. This was one hell of a catalyst event. The conversation was stark and I wasn’t prepared for it. “We ought to discuss what happens when MW has an infection that they can’t bring round? Do we want them to resuscitate?” Sorry, what?

MW has deteriorated a lot since the specialist last saw her. Swallowing and breathing have both been compromised to a degree. That’s due in part to the morphine patches being administered. But taking away the patch would bring back the pain. It’s a shitty trade off. Also, the MS is making her weaker. Her nerves are increasingly damaged. It would be a good idea to have a PEG feeding tube inserted into her stomach. But only if it’s assessed that she can withstand the surgery.

A PEG would give better access, long term, for administering meds and fluids/nutrition. Explaining this to MW is easy. She’s already agreed that it would be a good idea. She was quite animated when she agreed, but I don’t know how much of that was independent thought and how much was her just going along with the explanation given by the specialist. Explaining something that has obvious benefits is much easier than trying to get her thoughts on whether she wants to be resuscitated or not if she arrests.

Do Not Resuscitate. DNR. I sometimes hate the way that abbreviations can, on the surface, trivialise very important matters. A DNR order. Fucking hell!! Am I prepared to just allow her to ‘slip away’? “I’m not saying it’s going to happen tomorrow, next week or next month…”. No, but we’re no longer playing with hypotheticals, are we? This is a when and not if. This isn’t life insurance for the ‘just in case’. It’s planning for an eventuality expected in the not-too-distant future that I’m perfectly happy to stick my head in the sand over.

This brings with it a ton of questions. Is staying at home in her best interests? Particularly as I can’t watch over her 24/7. What if I miss something? I’m not medically trained. I panic at the slightest thing as it is. I can’t – and don’t want to – make an arbitrary decision about a care home but I’m not sure I’m emotionally equipped to continue what I’ve been doing. I’m fucking scared!!!! I don’t know what to do. What I do know is that people are looking at me for answers. This isn’t a conversation that MW has ever been willing to instigate and, now, I doubt she’s able to.

So, to the crossroads – own home or care home? I’m at a point where I know a decision needs to be made or, at least, a timetable needs to be drawn up for making sure MW gets the best care. Every attempt at drawing a conclusion only brings more questions. And in the middle of it all is a 50 year-old woman who didn’t ask for any of this. A woman who is incredibly vulnerable. A woman who, in her more lucid moments, is probably very scared. A woman who still smiles despite all the pain, all the infections, all the being pushed and pulled about, and never complains. And I don’t know how to have these conversations with her. I just don’t know what to do.