Gift: A Son's Story (extract) - Facing up

Another extract from my memoir of my time as mum's full-time carer at the end of her life. Although mum had recovered from her kidney injury, her condition was still terminal.  In early January 2017, with just a few months of her life left, she had a routine appointment with the renal specialist at the hospital.  He had news for us that prompted a lot of inner reflection for me...

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            The following week, she had her next appointment with the renal consultant.  Russell picked us both up as usual and mum was in good spirits.

            "It's so nice to get out for a little while, even if it is to the hospital."

            I turned to look at her.  "Now the spring's coming, I'll do what I said and rent a car now and then.  We can get out to some places.  You'd like that."

            "Yes.  That would be nice."

            I hadn't had a car for a few years.  Mainly because I'd been working locally and didn't really need one.  I had some spare savings and could easily have bought a cheap runabout, but I didn't want the bother of car ownership simply for leisure use.  Now, though, it would have been so useful.  It would have saved Russell having to keep finding time in his busy schedule.  It might also have saved some of the misunderstandings that seemed to be building up between Russell and myself.  I was beginning to get the feeling that mum was playing us off against one another - not deliberately or maliciously, but simply through things that she would say to him which might persuade him to build up a false impression of the situation.  He didn't say a great deal to me.  He didn't ask me for regular full reports or anything like that, which made me think that he trusted me enough.  But I still think he didn't get the full picture.

            When we got to the hospital, mum went off to get her usual specimen while Russell and I sat in the waiting area.

            "She seems quite a bit better," he said.  "Less frail than she was."

            I told him about some of the difficulties I'd been having, though - especially over medication.  And how much more forgetful and confused she seemed to be getting.  I told him what Dr Ebute had said, too.  He didn't seem overly concerned.

            "Well, let's see what happens today," he said.  "Hopefully, she's made a bit more progress."

 

            The truth was quite the opposite, though.  As before, I gave the consultant the full run-down on things.  I showed him her current medication levels, and the blood sugar record book.  He brought up her records on the computer and checked the blood results.

            "According to this recent blood test, your kidney function has reduced again, Mrs Peace."

            I wasn't sure she fully understood.  She looked at him and smiled.

            "I've been feeling a lot better lately."

            He didn't change his expression.

            "It's now down to six per-cent - though the hyperkalaemia seems to have stabilised."

            Six per-cent.  The same as it was when she was in hospital and not expected to pull through.  And a third down on December's figure.  We sat in silence for a few moments as he made some notes.  Finally, he looked up at mum again.

            "I'm going to sign you off from the clinic here now.  I don't think there's any more point in you having to travel all the way up here.  I'll increase your Eprex injections to twice a week, which will help your kidneys.  You can continue to have blood tests and your doctor can handle it all from now onwards."

            Mum seemed pleased.  "So, I don't have to come up here any more?"

            "That's right," he said. 

            And that was it.  Consultation over.  Russell helped mum up and took her back out to the waiting room.  I hung back for a moment.

            "Doctor... I'm mum's principal carer, as you know.  Is there anything I can do to help her in any way?  Anything I can change in her diet?  I've put her on certain foods because of the hyperkalaemia, and it seems to have helped."

            He shrugged.  "Keep going with that diet - but don't be too strict with her.  Basically, let her eat things if she wants them.  Apart from that, just make sure she keeps taking her medication properly.  Give the Eprex as I instructed.  Twice a week now, on Wednesdays and Saturdays.  Also, try to keep her diabetes as stable as possible.  I agree with the regime her doctor has prescribed.  Make sure she's drinking plenty of water, too,  and never gets thirsty.  That'll help flush the wastes out.  Do those things and keep her comfortable and happy.  It's all you can do."  His face was set and expressionless.  "We've done all we can.  It's just a matter of time now.  I'm sorry."

            I'd heard this before, from a number of people.

            "How much time would you say?"

            "Difficult to say with certainty.  But she's had all the recovery she's going to have.  I wouldn't put it at more than a matter of weeks, but they can surprise us.  It depends on her overall well-being.  Just keep doing as I've said."

 

            As we drove home, mum was upbeat.  "Well, that's positive, anyway.  I don't have to come up here any longer."

            I didn't comment.  Neither did Russell.  If mum wanted to look at it as a positive thing, then that was good.  As long as she was happy. 

            For myself, I felt like my head had been locked in a box.  All I could see was the wall of that box - directly in front of my eyes.  All other events and sensory distractions had been cut off.  I couldn't think about the next week, the next day - the next hour, even.  Just that moment.  That moment, connecting up to the next moment, then the next.  I thought of that scene in Mike Leigh's film Naked, where the David Thewlis character - a mean, angst-ridden drifter - is trying to explain to someone the contradiction of the ideal moment being the present... because it doesn't exist.  Because it's the future.  The present is forever being displaced by the future, when the present will become the past.  I wanted to stay here, in this present, where things were reasonably alright.  I didn't want to think of the future.  Yet here it was - right here.  Time moving on.  That road sign we were approaching.  We would drive past it in the future... here it comes... here it comes... gone.  And then we were past it, and the future was the past already.  If we'd been driving slower, passing that road sign would still be in our future.  But it wouldn't have changed anything.  We couldn't stop what was going to happen.

            And that was it.  Nothing could be changed.  Death was the inevitable end of all of us.  But we were forever sidelining that to focus on getting through our day, and looking forward to something.  Home time.  The weekend.  A holiday.  We tried not to think in terms of limits.  Instead, we thought of the years ahead.  Until something happened to bring us up sharp.  An accident.  A diagnosis.  The death of someone close.  Things that would change our lives, put them into perspective, force us to confront the inevitable.  We took life for granted, until something like that came along and shook us up.  Made us face up to it all.  And then, what would we do?  Everything we could to change it back to how it was - find the cure somewhere - at the same time as eking every second out of what was left.  Like mum was doing. 

            I didn't want to think about life without mum.  She'd always been there.  Always.  So, what would come afterwards?  How would it be?  How would I get through it?  I didn't know, and it was impossible to project myself there.  It was back to the present.  With what we had.  With her still here - sitting here behind me in the car, looking out at the day, smiling and chatting.  The present, which was really the future.  Which would soon be the past.  That's how my life would be then, I thought, when she wasn't there.  I'd always look at it as 'before' and 'after'.  Mum's life and death were the two conditions.  Before, when she was alive, and after.  She would define both conditions.

            The therapist I saw a few years earlier - the one who'd recommended me for the autism diagnosis - once asked me how I would feel when mum had gone.  When I no longer had that attachment; that anchor.  I mentioned to her something I'd read in an Annie Proulx book, when she talks about a character's being 'loosened into his life' by a major event.  I said I thought that was what it would feel like.  My life would be mine, to do with as I wished.

            "It is now, isn't it?" she'd said. 

            I knew she didn't actually believe that.  She knew the situation. 

            "Yes.  But it's also constrained.  All our lives are, in one way or another.  Money.  Work.  Education.  Mine has this thing of responsibility to the person closest to me, which is too strong to break."

            "So... what do you think will happen when you're 'loosened into your life', as you put it.  What will you do?"

            I had vague ideas at the time, partly driven by a need to break away completely from what I'd known thus far.  Safety and security.  Constraint.  Society as I knew it.

            "I'll probably just sell everything.  Get rid of it all.  Go back to scratch.  Then I'd pack a rucksack and go."

            "Go where?"

            "Just go.  Wherever the road takes me.  A refugee camp.  A war zone.  Anywhere that people might need help, and where life was so different to how it is here.  Where there were different sets of priorities.  Where the line between life and death was narrower.  And..."

            She looked at me.  "Yes?"

            "And... if anything should happen to me in the process.  If I should get killed, for instance... then so be it."

            "So, you're saying you wouldn't care what happened to you."

            "I would.  I'd take reasonable precautions.  I wouldn't be needlessly reckless.  But if you go into something like that, you're naturally increasing risks by a huge amount.  More risks than you have otherwise, probably, by staying like this.  A road accident.  A house fire.  Tripping over a rug.  Cutting your finger while preparing dinner."

            "And you seriously think this is what you might do, with the world as your oyster at last?"

            I shrugged.  "I don't know.  But it's how I feel impelled.  To not just take myself out of my comfort zone, but catapult myself out of it. Put it this way, the society I'm in now doesn't offer me much.  I mean, I'm not drawn at all by the things that most people in our society are.  I'm not interested in money, or property, or possessions, or climbing the career or social ladders.  I don't aspire to better myself materially, and keep up with or surpass everyone else.  I don't want things to be so complicated that I can't keep tabs on the responsibilities.  I have to have time to myself, and too much of everything takes away from that. I lose control of it.  My order breaks down and becomes chaos.  I like things to be basic and simple.  'Austere', as one of my exes put it.  That way, it's easy to move on from.  It's easy to leave behind.  I'd miss certain things about my life, but it wouldn't be the loss for me that it would for many.  I've always felt slightly distanced from it - right from childhood.  Society's often seemed like an alien place that I'm being conditioned to accept, rather than a place I want to be by choice."

            It probably wasn't any wonder that she started to think, after this, that autism was at the root of my issues.

 

            And now what did I feel about it all?  Once again I was back to that place of being told that things weren't good.  That mum was draining away.  I'd been grasping onto things in vague hope.  The improvement before Christmas had picked me up - and now, suddenly, I was dropped again.  All I could do was seize the moment - seize each moment.  Deal with what's here, right now - mum as she is, and still alive. 

            Deal with the rest when it comes.