Behind Closed Doors…

Recent events (which I will later divulge) have made me think about the impact personal stories have on people.  You can give someone all the facts and statistics in the world, but not until it’s relayed in such an individual way, can people start to fill in the gaps.  Sometimes not even then…

We’ve always been pretty private people.  The thought of putting this all out there for anyone to see is insanely out of character for me.  I’m not sure if I expect anyone to even read this.  Even if they did, I probably wouldn’t know if it had any effect on things…  Naturally I would think, who would want to listen to my sob story, what makes it any different from all the other hardships people face?  But I suppose at the end of the day, if just one person understands the impact that Motor Neurone Disease can have on people’s lives, or even finds out what it is…  then it’s worth something.

I think there’s an air of mystery around MND.  It’s not as widely talked about as other deadly diseases, yet just as potent.  The average person lives only two years from diagnosis.  That’s not a lot of time to get your head wrapped around having the illness in the first place, let alone watching it take over your body until you die.  To this day, there is no cure.  I know I’m only one person, but I hope by sharing my story, people can gain deeper insight into what really goes on behind closed doors.

THE BEGINNING

So I suppose I should start at the beginning…  My husband Mike was diagnosed with Motor Neurone Disease almost three years ago.  He started showing signs when we first got together seven years ago, if not earlier.  I first met Mike when I was 17.  We were at the airport, ‘meeting’ (stalking) our favourite band, Pantera.  I ended up getting their signatures tattooed on me that day, so funnily enough, I have a permanent momento from when we first met, 13 years ago.  We had lost contact for years and basically met up again when I was looking for guinea pigs to practice on during an apprenticeship at a tattoo studio.

It wasn’t far in, when I started noticing his walk was a little off.  I passed it off as nothing, thinking it was just the way he walked, not knowing any better.  It started to become more obvious, but whenever I enquired, he just said it was from an old rugby injury.  When it worsened, I suggested he go check it out, but he didn’t think it was anything to worry about.  In times like that, you know something’s not right, but you never imagine it’s going to be a fatal disease.  I think it was almost a year before he agreed to go see a doctor, and only because his mum told him to!  Looking back, he was lucky how slowly his disease progressed, because according to statistics, he could have been dead by that time, or well on his way.

For a really long time, three years in fact, we had no idea what was going on.  No one knew what was going on with his foot/ankle.  He kept getting sent to do tests…  with no definitive answers.  Naive in retrospect, I guess we assumed no news was good news.  Well, at the very least, it gave us no immediate worries and all we could do was wait.

It was a frustrating time to say the least.  I was at uni at the time, studying design after deciding tattooing wasn’t right for me.   I was spending ridiculous amounts of time in my studio, making scaled models and holding stupid bits of cardboard together while they dried or waiting for my brain to explode from staring at the computer screen too long whilst doing CAD.  Needless to say, I was fairly preoccupied with my intense workload at uni.  I guess it gave me good distraction from not knowing what the hell was going on.

Mike was labouring in a warehouse, and was beginning to find that things he could do easily before were draining him a lot more.  He was still fairly insistent that everything was fine, but we both knew it wasn’t.  He still only had problems with his right ankle at this point.  He was still able to walk, which he did a lot, to and from work.  He was just struggling a bit and limping.  We started to notice his leg getting skinnier.  That kind of set off the premature worries into the next stage; the unsettling feeling when you definitely know something is up.  He began to struggle more with walking, and began to get more and more exhausted when he got home from work.  He was now sweating ridiculous amounts from all the extra energy it took him to function.  And still he put up with me being a neurotic stressed out pain as I neared the end of uni, having dinner ready for me when I got home and doing a lot of the housework.

It’s hard to even remember all the different tests he did, and specialists he saw..  I remember him seeing a neurologist and getting needles stuck into him..  and doing an MRI, EMG, cat scans and lumbar punctures…  I’d bring my uni work to the hospitals while I waited for him or rush over from my classes, feeling guilty if I had to skip them, which seems so stupid in retrospect.  Clearly I didn’t understand at that point how serious it all was.  I just kept hoping it would be nothing…  A combination of avoidance and optimism.

I’m pretty hazy on the order of things.  It feels like a lifetime ago, which in a sense, it was.  I just remember the specialist explaining to us that it could be one of two things.  One is curable, the other is not.  Unfortunately, with MND, there is no test you can take.  There’s no stick you can pee on that will tell you in five minutes if you have a deadly disease or not.  And so, they had him come in for treatment.  If things got better, good.  If not, you’re going to die.  They’re always so hazy on the details.  Of course they don’t put it in those terms, so you just kinda believe it; that it’s not as bad as it sounds…  You’re overreacting…  And so you wait…

At this point I was finishing uni.  We were looking forward to be able to spend more time together and were planning to go on a holiday to America to see my sister.  This turned out to be the same time they set up his treatment dates.  We thought it over, back and forth, and it just didn’t feel right to go away and prolong the treatment, no matter how much we needed that break.  So we went with our gut and stayed.  I never really thought about it ’til now, but I guess we should have gone, because it looks like we’ll never have the opportunity to go again.  At least not together.  I guess we didn’t know it wasn’t going to work though…

Everything was just bad timing though.  We didn’t feel settled enough to go on a holiday because we were so on edge about everything and basically just wanted answers.  It was hard to think about enjoying yourself and relaxing when you don’t know what’s going on and how much you should be worrying.  Mike was getting noticeably worse.  I can’t remember at what point we started to see his left leg catch on and decide to slim down for summer too…

He was getting more and more exhausted after work.  I began to try to convince him that maybe it wasn’t worth the hassle and he should leave.  It’s hard watching someone you love pushing themselves so hard and suffering in the process.  I can now see how hard it must have been for him to let go of his work.  To let go of your independence and……… yeah it sounds lame, but I’ll say it anyway; manhood.  All I was seeing at the time was him suffering, and to me that was an easy decision to just stop.  But clearly not for him.

I had never really thought much about gender roles then either.  Of course it was also about not wanting to let the disease take over, but the two are tied into one, really.   I didn’t buy into silly stereotypes, thinking men have to be the strong breadwinners, and women, housewives and mothers.  Neither of us did…  but it’s not until it’s challenged or taken away from you, do you realise what a big part of your identity it makes up.  In Mike’s eyes, he could no longer provide for us and was forced to lose his independence and sense of self-worth.  It made sense why he was so stubborn at each stage of his condition.

I wasn’t concerned with gender specific roles in general, let alone in relationships, but it was the combination of trying to take on both at the same time that got me.  As his needs increased, I guess I began to take on the more masculine roles around the house.  I also had to be fully switched on to help him deal with each phase of the disease.  I was so focussed on getting him through it that I had complete tunnel vision and forgot to deal with my own feelings on everything.  Nor did I realise that in the meantime, I didn’t have anyone there for me.  The wheels would eventually start to fall off…

I guess I got impatient and frustrated that he was putting himself through all this, when I just wanted to look after him and make everything okay.  Obviously it’s a hard thing to accept that your body can’t do the things it used to.  He never used to talk much about it all.  I would try to get him to open up but he was pretty stubborn about it, about everything really, for a good portion of our seven  years!  He slowly changed over time as I kept coaxing (or to be honest, harassing) him to look at things with an open mind and look for solutions instead of just being overwhelmed by the problems.  I look back now and know that I pushed him too hard, before he was ready to admit things were definitely changing.  I was being the typical chick, trying to force him to deal with his feelings that he clearly wanted to ignore.  It’s what caused a lot of the tension between us.  He would shut me out a lot, which just made me try harder to get through to him, and all hell would break loose.  I couldn’t deal with the communication breakdown because ever since we got together, we pretty much only had each other.

TREATMENTS

Anyway, getting back on track… I finished uni, and Mike quit his work, and then we moved onto the treatments.  We had talked about him quitting, but I never really thought he would do it, so in a way it came as a shock.  He had basically been supporting us through uni, because I wasn’t able to work much during that time.  And then when he came home and said he quit, panic set in.  I felt a lot of pressure to hurry up and find a job and support us, so I could return the favour.

Mike was just beginning his treatments at the hospital, where he would get hooked up to a drip, and fed intragram (white blood cells).  He used to go into the hospital for up to five hours a day, four times a week.  We used to get really bored.  I remember we would bring the newspaper with us, and job hunt during that time.  We would also arm ourselves with dvds and nintendos, but then Mike would end up feeling too sick to do anything.  It was a long five hours.

It made him feel really terrible. It basically gives you flu-like symptoms.  He would burn up and get headaches and fever.  His eyes became really sensitive to the light, and his sockets felt like they were going to explode.  I felt so bad watching him feel so horrible all the time.  He would start to recover from the side effects, and by that time, have to go back into hospital again.  I don’t even remember how many months this went on for.  Maybe a year…?

We kept going in for tests.  At first it seemed like the condition stabilised.  They kept upping his dosage, thinking it was working, but then he started to get worse again, regardless.  So after all that, they just stopped treatments entirely, first having to wean him off the evil stuff.  (Evil to us, a life saver for others).  And then we started noticing his hands were getting skinnier on top of that…  We thought it all started progressing really quickly, not knowing that it just picks up without warning, before you can catch a breath.  Each devastating step would soon come quicker and more intently, while we were still trying to get used to the last one.  What we used to think was fast, is now a snail’s pace compared to these days.

I kept freaking out, not having much luck finding a design job that didn’t want at least five years experience.  Time was ticking to get a job before I could no longer call myself a recent graduate, and my chances were getting slimmer.  To be honest, I don’t think my heart was in it.  I was more concerned with looking after Mike.  To me, the job stuff was more obligation and necessity.   I didn’t want to admit the past three years of pushing myself to the limits and consequently being awarded top Interior and Spatial designer, were all meaningless.

I grew more and more deflated.  I was constantly worried about Mike and still didn’t know what was going on. I felt like a massive failure that I couldn’t help us.  All I wanted to do was spend time with him.  We clearly would have benefited a great deal from taking a freaking holiday at the beginning of this whole mess…  But it just felt like all I could do was panic and plod on in my weary state.

Mike was also looking for work, but he was finding more and more that his options were limited.  He ended up deciding to go back to studying and enrolled into a computing course.  He had always wanted to do something with computers, so I was proud of him for going after what he wanted, since he was usually fairly hesitant to try new things.  Things were starting to move forward for us again.  It was good timing because we were both getting pretty depressed.

It turned out that after Mike had finished his studies, he couldn’t find work anyway.  He realised he would not actually be able to do the work as he began to worsen.  Most jobs were in the city and would have involved a lot of walking to and from at least the car park or train station, which he wasn’t able to do anymore.

He also started having trouble with his hands.  They got really skinny and his grip would get more clumsy.  He started losing fine control and started dropping things a lot.  Eventually, they started to shake.

I could not even contemplate how hard it would be to throw your life off course to go after something you want, and realise you can’t have it.  Needless to say, he got pretty down about it.  All he could see was obstacles.  I would try to encourage him to think past them, but he was already deflated.  I wasn’t doing that great either with my own endeavours either…

At some point I realised sitting around feeling bad about myself, waiting for this dream job to appear wasn’t really an option.  I’d had a string of bad jobs I took that were vaguely design related, but turned out to be a waste of time.  When I did get full-time work merchandising, I felt uncomfortable having Mike at home alone all the time and again, my heart wasn’t really in it.  It didn’t help that the job was actually really stressful.  There was a lot of overseeing and telling (unwilling) people what to do and running around designing showroom layouts and moving furniture.  I had problems with my back, and wasn’t coping with the additional stresses on it from having to assist Mike with walking as his limp would worsen.  He was basically using me as a crutch, having no walking equipment at this time.

Eventually, they sent him to physiotherapy.  It wasn’t very helpful, but they sent him home with a couple of walking sticks.  He was going to do a class, but it turned out they weren’t safe for him and he was too much of a fall risk.  Nothing eventuated.  So we just kept plodding along, trying to put one foot in front of the other.

Still, I didn’t think things were that bad at this point as Mike could still function okay.  I just figured I was overreacting and being dramatic.  But work was horrible and I always wondered why I was doing something I hated when all I could do was think about Mike.  I was the only merchandiser in a massive store amongst the clicky salespeople, so I spent a lot of time making my own work and being inside my own head.  It was a really weird space to begin work also, my grandfather having passed away in my first week there.   More and more I continued to wonder why I stayed at this miserable job, when I felt so uneasy about whether it was okay to leave him home alone.  He could still get around, but was beginning to stumble more and have falls.  He was still able to get himself back up on his own though and didn’t get too hurt.  He used to grip the walls a lot to help him walk.  When we were out in public, in shopping centres and things, he began to always walk alongside a wall.  I would hold his other hand and help him along.

The merchandising work was making me increasingly unhappy, so I bit the bullet and left.   The very next day, I decided to start my own face painting business, with the incentive that it was usually weekend work and it would mean I could look after Mike for the majority of the time.

THE DIAGNOSIS

It wasn’t long after I started the business that we got his diagnosis.  After three years of wondering what was happening to him and getting tests done, we finally got some answers.  We had an appointment to see a specialist neurologist, who showed us some scans of his brain.  He pointed to a miniscule, fuzzy, white line and said it was slightly off.  He said from this test, it indicated to what looked like Motor Neurone Disease.  I had no idea what that was.

The way he explained it made it seem like there wasn’t anything to worry about.  He told us Mike’s was a unique case in that it only progressed in his legs (at that point).  He also explained that it was generally only present in the elderly.  He said that in Mike’s circumstances, he had been progressing unusually slow, so it was possible he could go on for a number of years, without many symptoms.

In no way did Mike and I understand the severity of what would later unfold.  I didn’t think he would get much worse than his limp.  The doctor had said “It’s looking like Motor Neurone Disease”.  We thought that meant he might not even have it, and there was no cause for concern.  But what it really meant was that because there’s no official test for MND, so they can’t say for sure, even though that’s what you have.

Prior to the diagnosis, we were told that it probably wasn’t a good idea to look a whole bunch of stuff up online and freak ourselves out.  I seemed to take this on board a little too enthusiastically, and for a good number of years, refused to find anything out.  I think that’s why I was so hazy on everything, and could keep optimistic.  I didn’t realise how much I kept myself in the dark.  Probably why it didn’t really hit home for a long time, and definitely not when we were in the doctor’s office, receiving the news.

Mike did look things up…  Once he realised the severity, he got quite depressed.  I on the other hand thought I had to be strong enough to get both of us through.  I thought by scaring myself about what it could be, I wouldn’t be able to be positive and put on a brave face.  Turns out it was just major denial.  I didn’t realise that being more knowledgeable on the topic would also give me a heads up about what was to come.  I thought it wouldn’t get much worse.  Clearly I was very, very wrong.

Me and Mike being in completely different mindsets on the whole matter added to a lot of the friction in our relationship.  We never went out much or did anything, so it just seemed like we were trapped indoors, freaking out on our own.  Every new progression of the disease, Mike would find difficult to deal with and accept, as would anyone.  I would continue to try and help him through it, and show him what he could still do or try to come up with ways of working around things.  So in retrospect, my denial served a major purpose.

When we got the diagnosis, the doctor told us about the Motor Neurone Disease Association of WA.  It happened to be down the road from the hospital.  He said it would be a good idea to go and check it out.  We didn’t know if we were ready after only just getting the news, but figured we were already there so we should just get it over with, before we lost the nerve.  It was pretty bizarre going in though when I still really didn’t know what MND was still or if Mike even had it.  I think Mike was still in a state of shock and disbelief.

The care advisor we met there was really nice and pointed us towards some services and information, without overwhelming or bombarding us.  She said it was up to us how much or little we wanted to be involved.  We went to an information seminar at the beginning, but that was pretty much it.  We were such private people and weren’t used to everyone knowing our business. I was always led to believe that personal matters were to be kept in the family.  As long as you put on a brave face and everything will be okay… Supposedly.

We didn’t know what to make of things for some time, and were used to just being on our own for so long.  I wish we had learnt early on how to accept help.  And how it could open us up to a whole new world.  Would definitely have made life a lot easier.  We were still trying to live our lives with some normalcy intact, but all we did was struggle.  I wish we had seen how stubborn we were or known how to accept help.  But what can you do…  The past is the past.  I think doing things the hard way for so long really shaped how things would end up today.  Which is a lot better off, strangely enough.

Some point after we got the diagnosis, we went to Thailand for a holiday and discovered he could no longer go up steps anymore.  We were visiting one of the temples and he took a fall down some steps which didn’t have rails.  I started to notice he didn’t have the strength to push himself up a step anymore and started having to help him up.  I was always on edge, waiting to catch him and being scared to turn my back for only a second.  He was reluctant to accept help at the beginning.  I think being in a foreign country was probably a good place to learn though.  I think it’s where we developed a lot as a couple and began communicating a lot more.  I suppose he had to let his guard down and let me help him, since he was trusting me in such a different environment.  Having Thai parents, I’d been there a lot and spoke the language, so he never understood what was going on, but trusted I was looking out for him and keeping him safe.  It really strengthened our relationship a lot and I felt like we were finally working as a team.

When we got back from Thailand, things got sombre again.  We became a lot closer, but we also discovered Mike was getting a lot worse than we realised.  It’s a depressing and scary thing to continuously discover new ways your body is failing you.  We realised he struggled to walk more than 200 metres, could easily fall down steps, or anywhere for that matter…

He was still driving at this point and I was getting really scared because I could tell he was losing fine control of his foot and kept thinking he just wouldn’t make it home one day.  He started to have more falls as he lost his balance; once in a shopping centre carpark, where people just idly looked on, not bothering to help.

I still remember when we used to do the grocery shopping.  He would always have the trolley because it helped him walk.  I never knew at the time how bad it really was because he never told me.  He didn’t want to worry me, and was still in denial.  He would always insist that he was fine when I questioned it.

I began to notice his speed slow down whilst walking.  I would just walk at my normal pace, then realise I was ahead of him and slow back down.  He used to trudge around slowly and I would just think it was because he hated having to go grocery shopping with me.  I guess he never told me much at all back then.

Dishes started to pile up as the housework started to get on top of us.  Mike began to have problems standing for long amounts of time, so the cleaning became more difficult.  I didn’t understand that things were getting too much for him.  Just as he didn’t want to admit they were.  So we lived in a massive state of denial.  I thought he just wasn’t putting in his fair share and leaving everything to me.  I felt more and more shut out.  I look back now and wonder how I ever missed all these things.  It seems stupid, all the time we wasted, bickering about silly domestic issues.

I realise now I was so anxious and felt massive pressure all the time because Mike was still not really dealing with things.  How do you deal with something like this though…  He dealt with it in the best way he knew how, but we were never able to freely address anything.  Most topics were off limits.  It got really tiring because I so desperately wanted to talk to about what was going on, but couldn’t.  And whenever I would broach the subject, we would fight because I was so impatient and frustrated at having to hold my tongue all the time.

It’s always the big elephant in the room.  You all know it’s there but you don’t talk about it.  No one wants to talk about death and disease.   Without any confirmation of how severe everything was getting, I just thought I couldn’t cope and couldn’t understand why.  I continued to beat myself up that I couldn’t handle things.   We started to think we needed help, but didn’t know how to go about it.  It didn’t make any sense because there were a lot of different organisations that were willing help us, we just needed to put our hands up and ask.

People from different associations started coming over and introducing new equipment to help Mike.  Things like bigger utensils to help with his grip while eating, rails around the house, and modified toilets and bathroom setups.   It was so strange getting used to all of it, that we didn’t think to ask for anything more.  We were needing more help at home, but I was too embarrassed to admit that I couldn’t do such simple things.  I felt inept as a carer for Mike and didn’t want anyone to know.

The face painting business kept us stable for a good couple years.  I had regular weekend work at the markets and eventually began to sell things also.  Mike used to come with me and do the money side of things, helping me sell balloons and things while I painted.  It was nice having him at work with me, where I knew I could keep an eye on him, instead of worrying about him being at home by himself.

Eventually, he had difficulties handling the money because he was losing his fine motor skills.  He would have trouble gripping the coins and wasn’t able to get his hands steady enough to tie balloons.  He began to get more fatigued staying at the markets all day long.  He used to use his walking stick, but would still fall with or without a walking aid.  His knees would buckle a lot, giving way underneath him without warning.

It was then when he reluctantly began to use his wheelchair.  I felt a huge weight lifted off my shoulders, because I wasn’t so on edge anymore, knowing he would be a lot safer.  We soon realised that getting him in and out of the car was risky on its own, and he was still open to falls while transferring.  By that time, I had begun to sell more and more things at the markets, and was carting around a lot of stock and equipment.  My back wasn’t coping well with all the extra lifting, and I was struggling with carrying his wheelchair in and out of the car on top.

At home I would help him, but he could still do things like get himself into bed from his wheelchair or go to the toilet on his own.  He had more and more falls though, whenever his leg would give way, or he lost his balance.  He slept in the spare room because he no longer felt comfortable in our bed.  He couldn’t turn himself as easily and found it hard to get in and out.  He was always going to bed late and waking up a lot during the night, so he insisted that he stay in the spare room so I could sleep properly for work.

I look back now and see just how tense I was all the time.  Sometimes I would hear a thud from down the hall and come running to see he had taken another fall.  I felt so uneasy about us being in separate rooms, but he kept telling me it was better this way.  He didn’t want to be a burden and again, insisted he was fine.  But whenever I went to sleep at night, I was always cautiously listening out for any signs of movement that he might fall.  I would keep running down the hall every time I heard a sound.  Most times it was our dogs knocking into something.  Sometimes I would go check on him three times before I was able to go to sleep.

After a while, he began to get really fatigued.  I didn’t realise that could happen just from sitting, because in the past it was from exerting physical energy.  He huffed and puffed a lot from all the extra energy and concentration it took him to do things other people found so simple.  We ended up deciding it was safer for him to be at home, than at work with me after he fell a couple times.  He began to have stomach problems which made it harder for him to be away from home if he had to rush to the toilet.  Obviously his rushing wasn’t that fast these days.

I felt increasingly uncomfortable about whether it was okay or not to leave him home alone.  Back then I didn’t know things like security pendants existed, where it would set off an alarm or ring straight to my mobile if anything happened.  He still was fairly independent though, so it was hard to know if I was overreacting or if it was a legitimate concern.

Being in such a constant state of worry for so long was affecting me both physically and mentally.  I was so stressed and anxious all the time and was getting over exhausted and sick a lot.  It became normal, and I didn’t really think it was a big deal.  I always figured Mike had it much worse than me, so I had to toughen up and just do everything for the both of us, even if it meant setting my own feelings aside.  I always felt alone because no one else I knew was going through this.  It was just really bizarre that Mike was affected by it in the first place, since it usually only affected the elderly.

I ended up expanding the business and getting more workers in.  I began to work less and less as things got worse with Mike.  I was finding it harder to run my business, and things were getting harder to stay on top of.  Having staff was helping, but it also meant there was more to organise.  I ended up having too much on my mind and began to make silly mistakes with bookings or simply couldn’t keep up.

I had also started teaching art to kids.  I really enjoyed it and thought it was a good add on to the business, and was hoping to set up my own classes one day.  The only problem was that it was quite time consuming, and I was having less and less time with Mike.  Mike had started to lose a lot of weight.   His right leg started first, then his left.  Then it spread to his arms and hands.  It really started to sink in when we had the visuals to back it up.

Eventually, I had to quit teaching.  I began to work less and less face painting, until I stopped that all together also and just continued to run the business from home and having staff take my place permanently.  I was always stressed and exhausted.  I really just needed a break.  I felt really guilty not working anymore, and like a big failure that I couldn’t hang onto my jobs and care for Mike at the same time.

GETTING MARRIED

Somewhere in between all that we got married.  We had gotten engaged after being together for a few years.  We tried to plan a wedding but knew we didn’t have the money or the energy to put one on.  We could never think of the right time to do it.  After being engaged so long, we decided there might never be a right time.  We were sick of waiting and didn’t want to go through the whole process of a wedding.  We just wanted to be married.  We had gone through so much together, and so early on.  You meet someone, fall in love, and plan to start your lives together.  You don’t expect that you’re going to be bracing yourself for the end, when it’s just begun.  It seemed silly to have made no official commitment when we knew we already had by seeing each other through the best and worst, and knowing we stuck together by it all.  We already aced the “through sickness and health” portion of the vows, so we decided one morning to just go ahead and do it.  My mum is a marriage celebrant so it was relatively easy to set up in a short amount of time (about 12 hours).  We’re coming up to our first anniversary in less than a month.

To sum up the past few years, we had a lot of adjusting to do.  I was blindly optimistic, and Mike was reluctant to admit he had problems.  The more he accepted my help and let me in, the easier it was for me to find empathy instead of being so easily frustrated.   We butted heads a lot, but gradually began to see things from each other’s point of view.  No easy feat when you are both struggling and in high stress situations.  We were always together, hiding away from the rest of the world.  We had no real chance of things settling down long enough to gain any real insight or perspective on the matter.  It was a long road, but we grew much closer over the years.  Our communication kept strengthening and we worked as an alpha team, finding it easier somehow to get through things even though they became worse as the disease took over.

Even though we were getting stronger, we still were worn out.  I was finding it hard to keep up with his growing needs because I never addressed my own.  I pretty much got to the point where I was worried I would have a nervous breakdown, and didn’t know who to look to for help.  I tried to reach out for help and finally admit I wasn’t coping.  It took a lot.  Which is why I was so crushed when I was essentially told to just keep it together for Mike.  It stung not having my feelings acknowledged.  I didn’t know what else to do, so I kept going, not knowing if I could handle it.  I kept trying to push on as things got worse with Mike, knowing he needed me to be strong to help him through, not wanting to be weak.

He began to have difficulty eating.  He could barely hold his food down.  Whenever he ate, he would have to go to the toilet.  It got to a stage where he just didn’t want to eat anymore.  He had lost about 30kgs (now 40kgs) from having stomach problems for the past year.  It made it difficult for him to leave the house, let alone keep up with all his appointments.  People thought it was a flimsy excuse and that he was just avoiding things.  It really bothered me because I was the only one who knew the truth, and no one seemed to believe it.

I kept experimenting with different foods he could eat, but eventually he just couldn’t handle anything.  They put him on a liquid diet, which helped for a while.  That ended up making him sick too.  I was always so stressed about him not eating.  I kept trying to coax him to, but he wouldn’t.  And who could blame him.

His weight kept dropping (also to do with the muscle loss).  It wasn’t just on his arms and legs anymore; his face was getting thinner and his ribs started showing more.  I would help him shower and notice his spine sticking out more and more each time.   His speech was starting to slur and he had problems swallowing.  He started to choke whilst drinking or eating and I would watch him like a hawk, worried he would suffocate and die.

He was getting really frustrated at feeling so sick in the stomach all the time, but not having any answers after getting it checked out.  It’s not meant to be a symptom of MND, so we had no idea why it was happening to him.  It was becoming such a concern that he had to get a feeding tube put in.

THE PEG

I think that’s when everything started to change.  His dietician was concerned about his weight loss and said we should start thinking about getting a feeding tube put in.  He didn’t have to use it, just have it as backup.  People with MND have trouble with lung function, so it’s best to get it done before they worsen and the procedure is no longer safe.  Turned out he really needed it then and there, it wasn’t premature at all.  We were already so weary.  We were scared at how serious things were getting.  Mike bravely made the decision to get his operation done, and that was when things turned sour.

Everything has changed very quickly over the past few months since he entered the hospital.  After he got his operation done, he was quite out of it for a good few days.  During the operation, they found that his stomach was quite high up and had to pump a lot of air into it to move it down.  They gave him a lot of medication to counteract the pain and nausea it caused, which made him really drowsy.

A PEG tube operation doesn’t take long, and usually the patient can go home the same day.  Mike was being kept for a few days because they wanted to get him on a bipap machine which would help him breathe at night.  At the time I didn’t realise it was so important because his lung function would significantly reduce, making it hard for him to breathe.  Eventually he will be quite reliant on it.

Mike kept switching between falling asleep and needing to throw up.  He would fall asleep with the sick bag held up to his face.  He had problems getting up from bed, and it took a few nurses.  It was then I began to wonder why it took three nurses to do what I had thought was a one person job at home.  I didn’t know whether to worry that he was so sick from the operation, because he was already meant to stay for longer than most people.  I found it really difficult not to be able to communicate with him because he was so drowsy for those three days.  I usually turn to him when I panic about things, and he calms me down…  so I didn’t know who else to turn to.  It had only been the two of us at home, dealing with everything on our own for so long, I had no idea what to do now that I couldn’t even talk to him.

It really hit home then how difficult things had become.  I had irrational fears that he wouldn’t recover.  Turned out they just gave him too many meds.  He had a horrible period of just waiting for them all to wear off so he could feel better.  Still, I began to imagine what things would be like in the future, how I would be on my own, not knowing what to do when he could no longer speak to me.  I felt really overwhelmed at the thought of things getting much worse, when I was already really struggling.  It was getting harder to help him up when he fell, or assist him with showering.  Sometimes he would fall and it would take an hour for us to come up with a way to get him up from the floor and to safety when I couldn’t physically lift him.

I grew more uneasy that even when I was with him 24/7, it simply wasn’t enough.  I didn’t know things like hoists existed, where he could safely transfer without me lifting him.  I just felt really trapped for such a long time, not understanding how we could go on if I couldn’t help him anymore.  He needed me more and more, both physically and emotionally, and I didn’t see any alternatives but to just keep going and do the best I could.

HOMECOMING

After those few days, Mike was still quite weak.  After almost a week, he was finally allowed to come home.  He was set to leave after the weekend, when they could make sure we ready and all set up for going home.  There were plans in place to finally get some help around the house, although this would take a while to set up.  After seeing how much assistance he needed in hospital, I was a bit apprehensive about whether we would manage okay.   It was what I would normally do at home, but seeing my jobs replaced by a few nurses at the time made me rethink how much energy I thought these things took.

My worries faded when I got to the hospital on the Saturday morning.  I was thrilled to see he had almost made a full recovery and we decided not to keep him there any longer than we had to.  The doctor was happy with his improvement and agreed to let him go home.  The only thing we would miss out on was the nurses double checking we were okay to look after his PEG tube, and making sure we had everything at home.  I had a nagging feeling at the back of my mind as to if I could handle it, but dismissed it as me just being paranoid.  I didn’t want to be selfish and tell him not to come home if I was worrying over nothing anyway.  I knew how much Mike hated hospital and just wanted to get back into his comfort zone; at home where he belonged.

As we were set to leave the hospital, Mike got into the car.   Already I noticed how much harder it was for him to get in the car, even with assistance.  We continuously had to reconfigure our methods of getting him into the car, as it became more and more dangerous to get him in without falling.  And once he was in, sometimes we couldn’t figure how to get him back out if he didn’t have the strength to push himself up off the seat, despite me pulling him up.  Still, I thought maybe it was because it was a different car than he was used to.

We got him home and I realised he was still really weak.  I knew I could (just barely) handle things going back to normal, but didn’t account for him needing much more help than usual.  It was only a week we spent apart while he was at the hospital, however it was my first break in a really long time.  I had been in constant survival mode, that I didn’t realise how drained I actually was, until I finally got a chance to stop.  Once I was able to slow down for five minutes, I was feeling less and less confident that I could keep going.

Plans were in place for help at home; people were coming out to show me how to take care of his feeding tube; we were arranging for help with the housework…  I thought if I could just hold on a little longer, things would get easier.

Before, he could still hold his own weight, as long as I could help him stabilise.   Now, he needed me to actually take his weight and lift him completely when we would transfer him to the toilet, bed or wheelchair.  I couldn’t even begin to think of how I would get him showered, but missing a day was not an option since he had a new surgical site to take care of, that could easily get infected.

I was waking up every couple hours to give him his medication, toileting him, and lifting him.  He was losing his dignity, having to let go of all those things he used to be able to do himself.  Having your wife have to wipe your bum for you when you’re only 28 years old is a hit of reality to say the least.

It didn’t take long until my back gave out.  I had no idea what to do, now that I couldn’t help him dress, feed and bathe himself.  We tried to get emergency care in, but no one would help because we didn’t have a hoist.  It was against their ‘no lift’ policy.  I couldn’t understand why I was doing things trained professionals refused, but it’s pretty obvious given what it was doing to my back.

It was pretty depressing feeling so stuck, and knowing there were no options but to carry on.  I had been so used to Mike relying on me, regardless of whether I could do it or not.  I just got used to pushing on, even when I was sick or injured.  I always put him first automatically, that I didn’t realise I had gone from being his wife to his carer.

There was about a month or so when I got bronchitis from being so exhausted.  I was coughing so bad that I quite possibly cracked a rib.  I was in so much pain, that I had to stop speaking for a while, using other devices to communicate with him.  I knew my body was demanding a break, but I also had no idea how I would continue to care for him on my own.  We managed to get through it somehow.

THE DECISION

Anyway, getting back on track…  We continued to frantically get help, but alas to no avail.  In the end, the only option was to send him back to hospital while my back recovered and the services at home were set up.

I should have felt more positive, like help was finally coming.  Deep down I knew it wasn’t enough.  I was already spent.  I didn’t feel like I was in a stable position to provide care for another person anymore.  I really wanted to make it work, but couldn’t.  I knew it wouldn’t be safe for him to come back home again, and so we made the gut wrenching decision that he would go into a care facility.

I think we both knew it was a long time coming.  I knew for a while it was heading that way, but couldn’t imagine us being apart.  I felt like I was giving up on him when he needed me most.  I didn’t understand that we could still be together.  I felt like a terrible human being.  We had been together almost every day for seven years.  To be apart was incomprehensible.  I was panicking it meant we would have to split up if we couldn’t live together because it was so hard to imagine.  It really hit me hard and I just felt like everything was falling apart.  I had been the rock for so long and I really just started to break down.

TURNING A CORNER

It was a strange dynamic.  I guess somewhere along the way, the roles got reversed.  He got so used to relying on me, and I always made sure I was strong for him.  I think once I stepped down from that role and realised I couldn’t keep it up, it gave him the leeway to take over and gain some masculinity back.  He was so easily defeated in the past, I thought something like this would just shatter him.  I was always afraid if I stopped being the brave one, his confidence would slip even further and I couldn’t bring him back.

He proved me wrong though.  Seeing me like that finally made everything sink in for him.  I had told him a lot in the past that if he kept putting all that pressure and expectation on me, I would eventually have nothing left.   Of course he needed me to physically help him, and emotionally too as we came to each hurdle…  But because he hadn’t dealt with his illness and surrounding issues, that left only me to fill in the gaps.  And there were a lot of them.  I tried for as long as I could, but eventually there needs to be some form of balance within a relationship.  I could do the physical stuff, but needed to be seen halfway on the emotional.  I couldn’t keep giving and giving, without getting some form of support in return.

At the very beginning, he would hide a lot from his family because he didn’t want to worry them.  A sweet sentiment, but I realised it meant everything was left up to me.  He didn’t want to talk about it and I couldn’t talk about it to anyone else because no one knew the gory details.  It was like I had to hide a huge, but very blatant, secret.

Anyway, I only go on about all that to prove my point that it was a big deal for him (and me) to make such a drastic change in outlook.  I worried he would fall apart too, but somehow he really found such strength and courage to pick up the pieces.  I think that now I had finally let my guard down, he was able to step up and be there for me, instead of being scared.  Once he realised the impact everything had on me, he made a real effort to support me in my decision.  It really didn’t even take much effort for him because he was so determined.  It takes a brave person to be able to do that, to face up to a challenge when their whole sense of security is about to be ripped away.   I was worried he would be mad at me or resent me, thinking I had abandoned him.  Yet somehow, it made us even stronger.  Everything was disintegrating around us, but it made us stick together and really grow as a couple.

After that, we really had some major adjusting to do.  With Mike still being in hospital, it really gave me a chance to deal with all my pent up feelings from the past seven years.  Feelings of loss and grief over what our life had turned into, and just pure sadness that someone I loved so much was in the process of leaving me just came oozing out.  I had blocked all my emotions out so badly, that when they began to release, I started crying like a wounded animal.  I didn’t realise I hadn’t cried much up until then.

The house was really lonely.  I wasn’t used to how quiet everything was without Mike, especially since he had a habit of bashing into walls and doorways with his wheelchair or dropping things.  I hadn’t ever lived alone before.  It was really weird not having my best friend around.

The plan was that Mike would stay in hospital until he could be placed into residential care.  We were both really uncomfortable with the decision, but knew it was the right one.  Christmas and New Years came around and Mike was still there.  We ended up finding out that he would have to wait at least six months to be placed into a home, so he had to apply for an aged care facility.  It’s not ideal for a 28 year old to be in with a bunch of 60-90 year olds, but it beats the alternative of staying in hospital.

It’s been over a few months now, and he’s still waiting to for a place to open up.  We don’t know how long it will take, but we’re hoping soon.  He’s pretty eager to get out of there and away from the grumpy old men who won’t stop farting and burping all day long.  (It gets worse than that, but you don’t want to know all the other details.  One word.  Enema).

GETTING IT OUT THERE

We’ve been trying to get out more lately.  Now that we’ve had time to adjust and have a good look at the way things were, we have more energy to try and experience things together again, instead of trying to hide under a rock.  Recently we attended a presentation dinner at a football club, to share our story with everyone, to show the impact MND has on people’s lives.  It was definitely not something either of us thought we would ever do in a million years.  Up until the whole hospital experience, we never talked about it much to anyone, or they didn’t talk to us.  At one point, the social worker called a family meeting in a tiny room and had a whole bunch of doctors attend and work out a game plan.  She thought it was important to get everything out there and have everyone on the same page, so they would properly understand what things were like for us.  I was so terrified, being under a microscope, having everyone talk about us.  Going through that made dinner in a big hall filled with footballers a walk in the park.  It was character building to say the least.

Having Mike at the hospital has really taught us both a lot.  It showed us how solid we are as a couple, despite all the bumps along the way.  It made Mike leave his comfort zone that he was previously so attached to and get used to having a million people buzzing around him.   It made me deal with all my feelings so that I could let go of them and move on.  It made us both grow a lot more independent, yet closer than ever.  We’re a lot happier, and laugh a lot more…  But when it gets rough, and things get worse, we now know we can depend on each other.

Anyway, that’s my/our story.  The most valuable things we’ve learnt during our whole experience thus far, is that the world isn’t going to end if people find out your skeletons in the closet.  Shedding the light on such a dark topic (yes, I went there) can prove very rewarding.

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7 thoughts on “Behind Closed Doors…

  1. Thanks Claire, for sharing wtih us. I wish we had known earlier and could have helped both you and Mike out. We have missed seeing you both, miss Mike’s sense of humour and your good company. Fliss

  2. What a truly touching story. You’re both amazing people. Wonderfully written – Claire you’re so talented and arty farty :) I had no idea what was going on. Thanks for sharing this with us. I look forward to seeing more photos. The zoo trip looked like fun. How lucky you were to see a tiger chucking a shit haha.
    Thinking of you both xx

  3. Hi Mike & Claire
    Mike, just came across one of your threads on ALSforum and noticed you are also from Perth. Sorry to see someone so young with this horrible disease. For the last 2 years have been supporting a close friend as she battles MND. Actually Natalie is doing really well now but it has been an emotional rollercoaster, which I’m sure you can fully understand.
    I was reading your blog this afternoon, under the treatment section you mentioned when you were on the drip, you said it was intragram, I have been trying to research this but can’t seem to find it. Also, “It basically gives you flu-like symptoms. He would burn up and get headaches and fever. His eyes became really sensitive to the light, and his sockets felt like they were going to explode.” Did any of the doctors mention “Jarisch-Herxheimer reaction” or “Herxheimer reaction” or “Herxing”. This is a bacterial die off and can be the same symptoms as you experienced. I couldn’t quite understand what you were saying – were you getting sick after every treatment? Also, did the doctor mention at all your sugar levels were elevated at this time? Hoping to hear from you. Terry

  4. Hello terry

    The drip I was put on was called instragam P, it was immundoglobulin infusion. It was in case I had a condition called multifocal motor neuropathy. The doctors or nurses never mentioned herxing nor did they check my sugar levels. Hope this helps and ask anymore questions you need to ask if you have any

  5. Hi Mike,
    Did the doctors say this reaction was normal for that treatment?
    The ALSforum is full of very friendly, caring people. The ALS-TDI forum may interest you, people like you and me looking for answers. They are not relying on the medical community, they are determined to find the answer themselves and yeh, sometimes it can get heated.
    Terry

  6. Pingback: America | Skeletons in the Light

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