Wow, it’s taken me a long time to write this one. Maybe I’ve forgotten some the finer details and maybe that’s just as well. I haven’t had much time or inclination to write lately, although my head has been full of thoughts, especially as we are here, at the first anniversary of my mum’s death.
Nobody likes to think about death or dying, but just as it can bring out the best in some people, it can also bring out the worst. Grief isn’t rational. Families fight and argue and once upon a time, I would have been the first person to say I don’t care what happens after I’m dead because I’ll be dead! But now I will say this; if you have more than one child or that child was not sired by your current partner, please, do your family a favour and write down or make a recording of everything you think you would like to happen at your funeral, even if you really don’t give a shit! Do it now because your family will give a shit. They will be emotional and death can be very unpredictable. For example, this happened a few weeks ago: A friend of a friend wandered into the bedroom with at least two of her three young children (she’d popped into bed with one of them the night before as you do sometimes with young kids) to see why Daddy wasn’t up yet. Daddy was cold because some time earlier that morning he had died in bed. Out of the blue, at 41 years old. Sobering and quite possibly rare, but yet it happens.
Although my mum alluded to what she wanted at her funeral, she refused, point blank, most of the time to talk about it once she was dying and of course extremely fearful of what was coming. The idea of organising a large gathering All About Her, that she wouldn’t actually be present at….Ah yes, that bit… And who can blame her for that? These things really must be discussed and recorded when death seems far away in the distance. Somewhere in the future, something that cannot touch us right now and is nearly always something that happens to someone else.
I have a brother and like many siblings, we have our issues. My brother will recall exactly the same incident in a completely different way and I will be thinking, “Er really..?”. So according to my brother, my mum had told him what she wanted, but certainly she didn’t tell me or even confirm although she did seem to like the idea of a lighter type memorial rather than a dirge in a church-like building. She snapped back quickly when I mentioned it to her though and wouldn’t discuss it further, obviously freaked out to remember that this was something she would not be attending. My mum’s partner was beside himself and just not capable of organising anything. Therefore, it was easy for my brother to convince himself that what he wanted was actually my mum’s and our stepfather’s plan. I don’t think he did this consciously, I actually believe that he thinks it’s true and he is right. He made a decision that the wake wouldn’t be at my house – and I know it’s because he was fearful that it would end up “being mine”. He then told me what he was organising was was what our step father wanted and it was up to him (my step-father later told us that this was not the case, he just didn’t want to have to do any of the planning). So, the wake ended up being at my mum’s friend’s house – also a friend of my brother’s. This house was completely unfamiliar to me or my children and none of us were able to bring our dogs along – dogs that my mum adored. But this is the way things can roll. Needing to take control all the time is a side-effect of anxiety and fear and I’ve seen the fallout of this so many times with friends in similar situations, especially when there are lots of grown-up children. In the end, there are choices: Fight with your sibling/s and risk never speaking again, or draw on your deepest resources and remind yourself that either way, your parent is dead and so what does it really matter at the end of the day?
My mum had a lovely group of friends, but in the last few weeks of her life, she had barely any energy. Once upon a time, I thought making the time to visit friends who were dying was the right and proper thing to do. But after my experience, when there is family involved, I am not so sure. There were times when my mum would tell me not to come to visit because she was exhausted from all her visitors, none of whom were family. My brother would tell her tough luck and then visit anyway. They had a very different relationship, but I couldn’t understand how her friends didn’t see that it was time to stay away. On the other hand, she also had a friend who refused point blank to visit her since she’d been diagnosed. “I’m just not good with illness”, she told my sister-in-law when she ran into her in the street. My sister-in-law put her hand up angrily, “Please, go away” , she said, and walked on. Sadly, it’s not unusual for some people to make this stuff all about them. For example, one of my friends told me she couldn’t make the funeral service “..It was because ….well… I just didn’t want to.” (Read: “I am very sorry for your loss but the funeral will affect me too much. My feelings are very important”).
It’s hard to write this next bit because truly, nobody deserves to be treated like this, and yet I know my mum was lucky in that she didn’t suffer greatly from pain like some people with cancer. Only in the last few days of her life did she start to feel uncomfortable as the tumours grew and her neck and back became weak and sore. By the time she asked the nurses to up her morphine, she was days away from death and became very incoherent very quickly. As another person who liked to control things, I think she had resisted the lure of morphine for a long time as part of her palliative care because she knew it would be the last step. Finally, the mind would relax enough to allow the body to go.
I’m not sure why, because again, she just didn’t want to talk about it, but early on in her diagnosis, my mum had made the decision that she didn’t want to die at home. She wanted to die in hospital. Our area’s main, teaching hospital is located about one hour’s drive from the smaller, regional town that we live in. Although she had lots of treatment at the large hospital and told us the staff were very kind and had become “like family”, it would have been quite impractical for her to stay there towards the end of her life. Her sisters were staying locally and had come from the UK to be with us. We had to work and the kids were at school. Every day if she had stayed in the city centre would have involved a day trip for one or all of us, so it made more sense for her to be in the local community hospital, which also offers two palliative care beds. This way, we could all pop in and out whenever.
Let me be clear though, the term community “hospital” should be used loosely – if at all – since this place is obviously just a clinic or a medical centre and does not have the staff or facilities to offer much more care than that. As a community, we are generally expected to come here with our emergencies first. Once the situation has been reviewed, we may be sent to the “proper” hospital, possibly in an ambo. When the situation is deemed serious enough to warrant a chopper or immediate treatment and time is of the essence, this procedure will be completely bypassed, but, truth is, many local people choose to bypass this procedure anyway if they feel they have a more serious situation on their hands because they have very little faith in the centre. Rightly or wrongly, this place has ended up with a pretty bad reputation care-wise.
When it came to my mum, one of the obvious issues was that the majority of the staff looking after her were not trained as palliative care nurses. All my mum really wanted by the time she ended up in there, was to be left alone to rest. She didn’t want the staff popping in to her room all the time because she was exhausted and wanted to sleep the majority of the day. Typically, when she did ring for someone, they would take ages to come or come and tell her they would be back but then never come back. I understand this is the public system, it’s busy and it’s short-staffed. However, the empathy from some of these people was sadly lacking. I can’t – and won’t – single out anyone, because it wasn’t any one person necessarily, it was more of a dynamic, but there was a palpable coldness and sense of detachment when it came to some of them and their treatment of her. An attitude that seemed to suggest she wasn’t a real person anymore. She was dying and wasting space. “We are on the clock”, this dynamic seemed to be stating as they glanced at their watches. So please, hurry up and die.
Dying for a relatively young and otherwise healthy person is harder than you might imagine. The process is tedious, cruel, sickening and confronting. You find yourself wanting it to be over, but fearful of what that means. My mum had been in the hospital for less than two weeks when we were told she had to be moved. Apparently, it was true; she hadn’t died quickly enough and so the plan was to move her on to a nursing home that could also offer palliative care. A nurse told me that sometimes being told “they” (the non people) were going to be moved was all it took for them to “let go”. The thought of it was so traumatic, that it was often enough and they would pass beforehand.
To this day, I cannot for the life of me even imagine what this was about. There were two beds in the palliative care unit and my mum had one. I do hope nobody got bumped the way she did in the same manner so she could have that bed, because, seriously, if you are offering palliative care and someone is in a palliative care bed dying, then isn’t it their bed until they pass? We are all used to waiting in queues and being told that it’s not our turn yet and it wasn’t someone else’s turn for the bed because my mum was in the bed and should have been able to stay in the bed. How can you offer this kind of half-arsed care? “Okay, you can come here for a while, but if you don’t die within a few days, you will have to leave to make room for the next dying person who may or may not outstay their welcome and who may also have to leave to make way for the next person…” and so on.
My poor mum. It was a massive trauma but she made it to the care home and was then treated like your average new elderly resident. Nobody seemed willing or able to bypass “normal” procedure. As she lay on her new bed, barely able to move or even speak, she was instructed to do a series of little exercises to see “where she was at physically” while the very sweet little nurse ticked off her clipboard. What the Actual Fuck??? We were then shown how to roll her over using some kind of sheet to prevent injuries caused by lifting as she groaned in pain and despair. My poor stepdad could barely contain himself it was so awful to watch. Really, it was just more unnecessary cruelty by well-meaning people who had no real idea how they were supposed to deal with this particular situation.
After I faffed around the room as you do to ease my own sense of discomfort, watched my mum vomit another massive amount of God Knows What and wiped it off her face and her nose, I left for the day to go to work, pretending to be jovial and addressing her as if she was a young, cheeky child who hadn’t liked her medicine. I told her I would see her “tomorrow”.
That was about 4pm in the afternoon and the call came seven hours later, one year to the day.
Did it really have to be like that?