I don’t know how to start this article other than write the sad news that my mother passed away a month ago.
You may remember back in June 2011 she had a fairly significant stroke, which I wrote about in The Day My Life Changed and again in My Most Challenging Year Part 1: When Family Tragedy Strikes.
Since then, almost every day for twenty months straight, I visited her. To put it bluntly, it was one of the most horrible experiences I have been through, though I am grateful that I had the time I did with her.
I haven’t felt able to write about this on my blog. Understandably I am quite sad, which can be a bit of a motivation killer. That being said, having my business to work on is a welcome distraction too.
A lot of people who read EJ knew about my mother’s condition and would ask me how she was from time to time. I want to let you know what has happened, and in some ways write a tribute to my mother as well.
Needless to say, this article isn’t going to be exactly on topic with the usual EJ subject matter…
Mum and I were really close, really really close.
I was an only child with mum. Because my dad traveled and worked when I was young, I spent most of my time with her growing up. We also share many similar personally traits, including introversion and sensitivity. A lot of what is me is because of my mum.
Mum was the most loving person I knew. She’s the best example of unconditional love I have ever seen.
Although she struggled to make and keep friends, she always had time for people and rarely complained about others (a trait I respect highly, yet often struggle to maintain myself). The number of times I saw people treat mum bad, yet she forgave them, gave me an example of the kind of person I could only hope to be.
Of course as her only child, I felt the full expression of her unconditional love.
When I was growing up some people said mum and I were too close, and occasionally I questioned whether this could be true. I now know as an adult, what mum gave me was priceless. The world would be a better place if more people had relationships as close as my mother and I did.
Mum didn’t push me to do things if I didn’t want to – and a very shy child doesn’t want to do many things outside of play by himself.
I sometimes wish she did push me a little harder, as I may have become a more confident person sooner. However, I’d much rather have an overprotective loving parent than one who forces you to do things you don’t want to, which unfortunately was often the case for my mum with her parents. I think she was very cautious not to repeat her own upbringing experience with me.
Mum wasn’t ever sure what she wanted to do with her life. I often found her sense of always seeking “something else” frustrating, especially because her rate of change was so slow, at least in my eyes.
I figured if she wanted to get closer to her life’s calling, she had to do more things rapidly. That just wasn’t her style and for all kinds of reasons, including a sense of responsibility to support her family, she stayed in jobs that weren’t want she wanted to do.
During the last decade mum became a counsellor, a role that was by far the best fit for her. She loved helping people, no matter where you were coming from and what you had been through in your life. She had incredible patience and work ethic, much more than I have ever had.
Mum spent almost two years in a hospital bed. She had a tube in her throat to help maintain her airway because the stroke damaged her swallow. Because of this she spent much of her waking day coughing, and she could not use her voice.
She lost much of the strength in her body, so could not stand up and even sitting in a chair tired her out quickly.
Her short term memory was damaged, and although her long term memory was still intact, she often went back to different times, even changing her name sometimes to what she was called when she lived in Canada.
To make things worse, because she wasn’t always aware what was going on, she could inadvertently pull the tube out of her throat, which would lead her to suffocate. Because of this we had to put her arms in restraints, so she was effectively chained to the bed like a prisoner when no one was there.
It was because of the restraints that I endeavoured to make sure mum had someone sitting with her during the day, so we could free her arms to do important things like scratch her nose. Although mum’s partner and I visited every day, we were not able to cover all the hours, so I hired some people to sit with mum, do exercises and talk with her.
I felt like I was running a little business. I created a roster so our lovely helpers knew when they had shifts. I would usually go in during the mornings, then a helper would look after her in the afternoon and Phil, mum’s partner would go in during the evenings after his work.
Mum showed improvement over the time she was in hospital. Unfortunately she was so far from what she was, improving from 10% to 15% of what you were, while positive, didn’t have a big impact on quality of life.
Of course we didn’t give up hope and always continued to plan as if mum would get better.
On many occasions, doctors pulled me over and said I should prepare for the worst.
This happened during the first week when we were in ICU and they asked whether we wanted to pull the life support from her.
It happened again a year later after some nurses made a mistake and forgot to put the restraints on her arms. She pulled the tube from her throat and no one found her for 5-10 minutes. She couldn’t breath and lost consciousness. Her heart stopped, but by then they had found her, called an emergency and managed to save her.
Unfortunately as a result of the accident, we were back in ICU wondering if she would come through again, wiping out much of the recovery work we had done during the previous year. This was particularly hard to take because it was human error that caused the damage, and before that we were feeling a sense of hope watching her improve.
The doctors had the same thing to say again at the end of last year. Mum had improved after the accident earlier in the year, but she had suddenly lost consciousness. Her blood pressure was low and the doctors didn’t know why.
Within a day with some treatment she woke up and was back to where she was.
This is just a highlight reel of the bigger bumps on the road. The entire hospital experience was largely horrible for mum. She had drugs pumped into her daily, she couldn’t go to the toilet, speak or eat food. She had trouble breathing at times, including several boughts of lung issues, which were always scary because pneumonia is a big killer in hospitals.
On the positive side, there were times of laughter, especially with the nursing and support staff. Mum did smile and interact with the nurses, and I know some of them became attached to her, even though as nurses you have to be careful to guard yourself against becoming too close to patients.
For me the time in hospital was like going to another world. You go there and see people who basically have to pause their lives, sometimes for short periods, or as is the case with most stroke patients, for months at a time.
Before this happened I used to be afraid of hospitals. On many levels I still am, but now it’s with knowledge of what happens, rather than fear of the unknown.
I was a wreck during the first couple months after mum’s stroke. The shock was immense, the daily decision making an awful burden, not to mention the constant contemplation of whether mum would die, watching her body suffer day after day.
Once we made it out of ICU after three weeks, things became more routine based and the intensity dropped a little.
It was at this point I became a control freak, trying hard to make sure every aspect of mum’s care was looked after. This was in part reaction to the change in conditions from an ICU environment to a more relaxed ward environment. While the care was good, the contact from nurses dropped, so naturally we felt the need to be more diligent as carers to fill the gaps.
I became obsessive over all the tiny details. Things like how mum was positioned on her pillow, whether she was too hot at the window, whether nurses were doing things the “right way”, did she get therapy from the physio and speech therapist that day, etc etc.
Hospital care is a variable that fluctuates a lot with the personality of each nurse and health care provider. Some nurses were brilliant, some were less than so, just doing what they needed to, trying to get through the shift as fast as they could.
After a few months of driving myself crazy trying to control it all, I realised I was being foolish. You end up causing yourself excessive stress about things that were either out of your control or minor enough that I shouldn’t worry about them as much as I did.
Of course I still continued to work hard as an advocate for mum when I was there, but once I hired a team of helpers and everyone knew how things worked, I began to relax.
After more than a year in hospital I swung in the other direction. From wanting to micro-manage everything, I became detached, almost numb to it.
Mum had gone through so many emergencies, close calls, change of helpers, not getting enough care, random surprises, hospital bureaucracy issues and unfortunately becoming a victim of triage meaning we were not a priority for therapy as other, newer patients — it all became a little too familiar.
We all adapt, and I guess I did too. It was still a horrible situation to be in, but nothing shocked me as much anymore. I still cared for mum, but the trajectory we were on was not going to change quickly, so it became routine.
One of the hardest parts of having someone you love so much in hospital in the situation my mum was in, was trying to enjoy your own life.
Things like watching a movie in the cinema, or that feeling after a yoga class, or even basics like eating sushi, which mum enjoyed, triggered reminders that mum couldn’t do these things, and likely would never again.
I didn’t give up hope, but I was realistic too.
I came to appreciate what I called the “calm” times and worried less about whether mum was actually getting better. Those months where she was able to sleep for long periods, get some therapy even if it was erratic, and spend time with us watching DVDs, without any major hiccups, were the best.
There were times when I was frustrated that I couldn’t leave Brisbane, or that I didn’t know how long we would be in this situation, which was taking a big chunk of my day, seven days a week.
I would never stop supporting mum, that was a certainty, but the path we were walking was so unknown and difficult. On some levels I didn’t want things to go on, but of course I didn’t want mum to leave either.
After the hospital error that nearly killed mum, the realisation that every time I leave the hospital and say good bye could actually be the final time I do so, hit hard. I changed my frame to try and focus on being grateful. I began to cherish the laughs and closeness I experienced with mum, especially when it was just me and her.
Adding to the experience with mum, was what happened around us.
I saw people with all kinds of personalities and ages come in as patients or family members.
I saw children cry for parents and grandparents. I saw mothers worry about children, husbands look after wives, sisters and brothers embracing, fighting and laughing.
I saw people wandering the halls with lost expressions on their faces, crazy people shouting at nurses, lonely people trying to strike up conversations, sometimes rambling to themselves, and angry people swearing at the unjust treatment they were receiving.
There were young people unable to move from their bed and old people who had degenerative brain conditions so they didn’t know where they were most of the time.
Some people had seizures on a daily basis. On several occasions I had to bring a nurse’s attention to a patient who was flailing around in their bed, experiencing an epileptic fit.
I saw people with tubes attached to them, attempt to stand up, climb out of bed, then stumble, yank all the tubes out of them pouring blood, then nurses responding after they hear the thump of the body finally hitting the ground.
Hospitals can make you angry. You see inefficiencies, situations where just having one extra person sitting in a ward watching out for patients would stop accidents from happening.
Accidents require reports to be written, investigations to occur, and patients to head off for X-rays, blood tests and treatments. All of this costing so much more than the salary you could pay to the nurse to prevent them from happening in the first place.
Unfortunately policies seem to be reactive rather than proactive. Sadly, it can take a person harming themselves before they trigger the necessary conditions for them to get the attention they need. I’m not making this up, I actually asked some staff and they said yes, that is sometimes how the policies work.
In situations like with my mother, you would think the condition required additional care, but we were deemed not high risk enough to warrant it.
Hospitals are where many people go to die.
The ward where mum was for most of the time had a revolving door of patients. Most of them were just moving beds, some going to rehab centres, some returning to their local regional hospital and occasionally, some went home.
There were times though that people did not have a good prognosis. One sign of this is when the palliative care team are called in, another is when they are moved to a private room.
I never knew exactly what happened to most people, but I did learn about one elderly man who was opposite mum for many weeks, who I talked to a few times. I also talked to his family, including one grand daughter a little younger than me, who happened to have the exact same birthday as me.
Her grandfather was across from mum for over a month, but like most people eventually moved somewhere else. I don’t know where he went, but I did speak to his granddaughter many months later and found out that he had passed away.
It was a strange feeling to think that someone I was talking to so recently was gone. He wasn’t well, but he didn’t seem that close to death either.
Early this year mum moved to a rehab facility at the same hospital.
Although initially cautious, once we made it through some hiccups, including one emergency that brought mum back to the old ward, we settled into the new location.
The new facility was in an old building, but because it was a rehab centre mum began to receive regular therapy again. The allied health staff were really good, and we had a direction to work towards again.
We enjoyed a calm few weeks in February. Mum spent a lot of the time sleeping, as she always did, but the direction we were heading in felt positive.
I had a routine of my own, the team of helpers were now well and truly familiar with mum (they had become friends) and life was at least productive, if not ideal.
I came in and saw mum on Friday, we did what we always did, I joked around with her a bit and she was in a relatively good mood. I waved good bye when I left, she waved back.
On Saturday night I was out for dinner with my friends. I would see mum the next day, for my regular sunday shift.
The night dragged on and our meals were really slow coming to us. I started the night in a good frame of mind, but I grew more quiet as my hunger started to impact my mood.
Finally our meals were delivered and everyone chatted and ate as usual.
I received a phone call around 11pm while still at the restaurant, a late time for anyone to call. The guys joked that it would be a girl, but I knew calls at this time were not to be looked forward to, it usually related to something about mum.
I stood up, walked away from the table and answered the call.
It was a doctor from the hospital. She asked if I was driving, I said no. I immediately knew something bad had happened because they wouldn’t ask that normally.
She queried if a nurse had called me earlier and I said no. She acted surprised, then proceeded to say that mum had gone into cardiac arrest and they couldn’t revive her. She had died.
As much as I had prepared myself for this moment over the previous 20 months in hospital, you can never really prepare.
I felt my blood rush, and went and sat down. I told my friends that my mum had just died.
I composed myself, made a bunch of phone calls to family and started what would become a very hard week, full of family from Canada, rushed funeral arrangements, the funeral itself and of course, feeling pretty lousy throughout it all.
I’m still coming to terms with what happened.
Mum was always my safety blanket growing up, as many mums are. Of course as I grew older I became more independent, and in many ways I started to look after mum more than she did me.
I am my own person, which I told myself many times over the period when mum was unwell. I needed to contemplate a life without my mother, and reminding yourself that no other person defines who you are, even if you love them more than anything else.
On one level I am relieved. I can’t go back to my old life, but I have the time again to construct whatever my new life will be from now.
I am 33, mum was 63. I begin a new phase of life as mum ends her time on this planet.
I’m also relieved that mum’s suffering has ended. I know she would be incredibly angry that she left too early, she always planned for the future, unfortunately she had less future ahead than she thought. Living in the condition she was in would not have been what she wanted, so at least she has release from that.
On a personal level I am saddened that my mother will never get to meet her grandchildren, if I am to have any. The same goes for the mother of her grandchildren, if I am ever to find that person as well. This for me is one of the hardest things to come to terms with.
Having death come to a loved one is one of the most surreal experiences I have had. I want to talk to mum, tell her what happened to her, because she was the person I would talk to for anything major in life.
To wake up knowing that someone who has always been there, isn’t any more, is about as devastating as life gets, besides facing your own mortality.
It’s no secret that I have thought about death a lot before. It’s the primary driver behind my writings in The Change Manifesto.
This experience has changed me. I’d like to give you the positive take, that you should live life like every moment is your last and you may not have as many days ahead as you thought, but that’s not what I really feel.
I feel that death now is closer to me than it has ever been. I don’t mean that in a sense of how much time there is left before I die, but more about the realism that I feel around my own death. It’s more present now, more concrete.
No doubt I will reflect on this more as I continue to live, which as I have learned, is something that just keeps happening, no matter what circumstances you face. You can’t stop living until you die. It’s binary.
For now, I shall continue to distract myself with all the wonders of life that I enjoy, including the internet, writing, family and friends, the opposite sex, and ben and jerry’s chocolate brownie ice cream.
P.S. This track and clip by Tydi from Brisbane has resonated with me regarding my experience with mum and the hospital. I think it is an appropriate way to end the article –
Why does it feel like this is guaranteed…