Endings?

It’s taken me a while to get my head round the end. For me, it feels like the end of a very slow, debilitating episode, and yet when I look at the time it took for mum to pass away it all went pretty quickly. In the end. I was on holiday with my wife when I received a call from my sister to inform me mum was unwell, she had an infection, and this would probably be the end. I took 24 hours to think about what I should do next, I booked myself on the next flight to Glasgow which was 4 days away, and I went back to eating Greek food and enjoying Greek sunshine. I made peace with the decision, if mum passed away while I was still in Greece I accepted it. I could have flown to an airport in England and got a train or a taxi back to Glasgow, but I decided I wasn’t in any rush to get back to see my Mum dying. I had been waiting for this news for ten years, I had watched her slowly become more frail, more confused, and more unwell; I was not in a rush to get myself back to watch her draw her final breaths. I was in a hurry, but not a rush. I made peace with these decisions because I have been practising making these type of decisions for a long time, and I decided I was going to make a decision that I could make peace with, I wasn’t going to do what other people would do, I wasn’t going to do what I thought other people would expect.

Mum passed away on Tuesday 5th September; 6 days after I landed back in Glasgow. In the week preceding my arrival all of our close friends and family made the trip to the hospital to visit and say goodbye. She was never alone from the time she became unwell until the minute she passed away. The staff in the care home allowed us to stay overnight, they allowed us to have as many visitors as we wanted, and they accommodated us wherever they could. We had made a decision as a family after a series of hospitalisations that there would be no more. If mum became ill, there would not be treatment. She would be made as comfortable as possible as we wanted, but no more interventions that would extend her life.

As with everything I have written about mum’s treatment, I would stress that these types of decisions are probably best made without considering anyone but the person you are caring for, and those closest to that person. What I mean is, there is no point imagining what other people might think about the decision, or what other people might do or have done in the same situation. I have no doubt the decision we made might seem cold, callous or just plain wrong to some. I am fine with that. I will also go a step further and say, for me, it wasn’t even a difficult decision because I know what Mum wold have wanted. She planned going to Switzerland from the moment she was diagnosed with Alzheimer’s, never realising that she would never be deemed mentally capable of committing to that course of action. She asked me to kill her regularly over the past few years, she asked the same of my sisters. “Just shoot me” she would cry out in desperation. She horded tablets for weeks at a time, but cruelly she would forget where she had stashed them and we would inevitably discover sandwich bags with weeks’ worth of pills hidden in her underwear drawer.  She wanted to choose her own ending, but her illness prevented her from carrying out even that simple act in the manner she wanted.

For a week we waited, watching her breath’s become shallower and coarser, listening as the intermittent pauses became ever more elongated. The care home staff were very respectful towards us, but some of the staff couldn’t quite grasp the treatment decision we had made, asking if we wanted mum to be fed yoghurt or something similar. Some of the medication decisions seemed counter intuitive; my older sister is palliative care nurse so she deals with these scenarios on a daily basis but the German system of palliative care seems far more weighted towards higher doses of medication whereas at times it seemed to my untrained eye that mum could have been in distress, therefor more medication would be required. However, overall I would say the balance of care was almost right, mum wasn’t overly distressed and she passed away with my sister Charlie and her sister Bernie and brother Jim close by.

Frances and I had decided to go for a brisk walk around ‘scenic’ Springboig and Garrowhill. We received a call from Charlie to say we should come back as mum has stopped breathing. Twenty seconds after ending the call mum started breathing again, and I would be lying if I didn’t say I would have paid money to see Charlie’s face when that happened. As a family, we laughed a lot during those final weeks, mum always liked a laugh and I am sure she would have been tickled at the thought of everyone thinking she was dead when she wasn’t. She passed away a few minutes later, before Frances and I reached the care home. I felt much as I do now, empty and relieved.

I feel that writing this rather intermittent blog has helped me in some ways, although I would be hard pushed to say exactly how. I think in the main writing about what happened helped me ‘think’ about what happened, which has helped me archive and categorise my memories and the emotions I feel or felt at the time of the events. I recently changed job and I am now working in a residential treatment centre for veterans affected by trauma and PTSD. I have learned a lot about archiving and categorising memories of events in the past 5 weeks (alongside other nuggets like how dysregulation of the HPA axis effects fear extinction in those affected by PTSD, the topic for another blog in the future surely?) and what I have learned ties in with what I instinctively feel when writing about events that have caused emotional disturbance in the past; the act of writing means I am thinking about what the events mean to me, which in turn allows me to categorise the event and archive the memory, thereby reducing the emotional disturbance the event causes while at the same time allowing me to access the memory of the event without re-experiencing the emotions I felt at the time as if they were happening to me  now. In other words, I can think about the past without feeling the effects in the present.

Looking back in what I have written about the experience, it seems unbalanced in terms of the journey. I haven’t really discussed a lot of the good times we had earlier in mums dementia story, so I will probably keep this blog going for a little while and discuss some of the things that happened earlier on, when we had more fun. I also want to go into some detail about the funeral and may discuss some of the practical things mum did in preparation for the days when she would become incapacitated. For now, she is gone and life, bizarrely, has continued. The sun still comes up, people still go to work, and my dog still gets manky and transfers the mank from his body to our walls. May it continue like this for a long time to come.

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And now the waiting begins part 2.

We are all still here. Not just in the metaphysical/philosophical sense but also in the practical, real-world application sense. Mum hasn’t eaten or drank water since Wednesday afternoon, 5 days ago. This highlights amongst other things that a lot we hold to be true is probably only partially true. I always believed that if a human being managed three days without drinking they would perish, clearly this is bollocks. What I have learned is that this may be true if the person in question is stranded in a desert, or stuck on an island open to the elements, but if the human in question is pretty much lying dormant not required to do anything other than keep breathing, it’s perfectly possible for that human to keep on breathing. Breathing doesn’t take much effort if you think about it. We do it all the time, even while unconscious. Humans have become excellent at breathing over the years since we first popped out of our mum’s bellies, growing from tiny need machines to walking and talking breathing maestros! World champion breather’s human beings, straight to the top of the class. Take fish for instance. Shit at breathing they are. Watch them out of water, gasping as if they have just completed an ultra-marathon across the Atacama Desert. Pathetic.

My oldest sister confirmed my worst fear about this on Saturday when she arrived and explained that mum wasn’t ready to go yet. Breathing too strong, heart-rate too steady, skin and pallor not yet deathly enough. Frances is a palliative care nurse you see, an expert in watching/helping people die. Apparently I need to keep my eye out for marbling around the feet and ankles. No signs of marbling yet, although this makes mums ankles sound like a corn fed heffer. I watched a guy on tv recently explaining how Brexit would be a good thing because corn-fed, hormone fuelled cattle from the USA would flood the British beef market with cheap, well marbled steaks. So, I should be watching for mum’s ankles to resemble a steak? I really wish I had asked Frances some follow up questions re the marbling. My other sister Charlie is as confused as I am, but we keep checking the ankles anyway.

The steady stream of family members, friends, acquaintances visiting, getting in touch, sending best wishes has been remarkable. I never realised I knew so many people. I knew my mum knew so many people. Everywhere we went she would always have to stop for a minute and have a quick chat with this person or that person. When I was a wee guy I dreaded these random moments. Some woman I had never met before would walk up to mum outside Presto’s or Dolcis and that would be us for what seemed like hours. Inevitably this would mean I wouldn’t get home in time to see Scooby Doo or He-Man and when I asked mum who it was she was just speaking to it always seemed to be someone related to my aunty Dolly, you know, Dolly. Lives in Royston. Friends/relation of Pat Toal as well. You know, Pat Toal! I seldom knew who she was talking about. I wouldn’t recognise my aunty Dolly if she walked in here right now and slapped me on the face, but I wish I knew her. I mean, who doesn’t want a fucking aunty Dolly!

I am having a rare moment at the care home where it’s just me and mum. My sisters will be back soon, my aunties will return in an hour or so, and I will leave for a bit. After spending so much of the past 10 years with just my mum, it’s an odd feeling to be sharing the end of her live with so many other people. It’s not a bad feeling though as I don’t have ownership on her death. Her passing will mean something to everyone who knew her, it will be the end of their individual relationships with her so it’s right that we all have our own endings; however, this doesn’t make it any less weird. It was just the two of us at her appointment when she got her initial diagnosis. It was just the two of us when she first made contact with Alzheimer’s Scotland. We attended her first dementia café together, we went to her checks at the memory clinic together, although my sisters both went to the odd appointment in the main it was me and mum. I looked after her at home until she couldn’t live at home any longer. I took her to hospital when she got too ill to live on her own. I escorted her to the care home when she moved in. Now things are happening all around me and I don’t really have any input at all. I am just waiting.

I decided yesterday that I have no strong compulsion to be with mum at her final moment. My sister would really like to be here at the moment mum passes, but I don’t value that moment any more or less than any other moment I spent with her so I am ok with not being there at the end. If I am, great, if not, it’s alright. Mum will definitely not be alone, there are loads of people around at all times so it will be fine. Yesterday I managed to go and rehearse with my band for a gig we have coming up at the end of September. After I finish writing this blog I am going to do some work. Later I will go to the gym. I will have dinner with my wife and come back down to spend some time with my mum and sisters. I may even go and get my dog at some point, I will need him at the end. His big daft face makes everything alright. I have awesome friends who have looked after him for me so I know he is having a grand time, it’s the cat I am worried about. She was in the cattery last week and seems to have had a personality transplant. Can cats have a personality?  Anyway, she seems to have missed us too much. She is so needy now she got into the bath with me this morning. It was nice enough, but she was quite wet and her claws are very sharp.

The puzzle of death or dying is the tension between being alive and being dead. It used to seem straightforward until I started thinking about how we use language to describe being alive or dead. Sometimes we describe being dead to the world, or saying someone is dead to me. The question remains, how do we describe life? My mum doesn’t fall into the category of being dead because nobody official has turned up and signed anything to say she is definitely dead, but what is her life? Her current state can be described as unconscious, therefor alive, so life could then be described as a biomechanical process which while active provides evidence of live systems. My question is, if someone cannot eat, cannot drink, cannot go to the toilet, cannot express themselves in any way, shows no signs of understanding the world around them, and has no method or ability to communicate, how can they be described as being alive? Surely it is only partly true? People in a coma are described as being in a coma. Mum is not in a coma. People with brain injuries and who require mechanical operations to allow functionality can be described as residing in a permanent vegetative state. That doesn’t fit mum. Whatever the essence of our life is, this is what mum is currently lacking, and describing something as being lacking in something else is very unsatisfactory.

I have concluded that what is required are some new categories. Being alive or dead are too definitive and lack nuance. I also think if there was another category to describe my mums current state of alive/deadness then maybe people might be less inclined to match the decisiveness of the life/death description with equally fundamental beliefs about how we treat people in this position. I know what my mum would say, ‘that’s not a life’ or ‘just throw me in a box and be done with it’. Of course, she didn’t like the idea of small animals nibbling her, and she hated the idea of being cremated in case she might wake up during the fire part of the ceremony. I believe the scene in Diamonds Are Forever when Sean Connery almost succumbs to fire death may have played some part in this. When I pointed out to mum that her dislike for both burial and cremation left us short of options (no burial at sea as mum can’t swim and doesn’t like fish), she seemed genuinely confused about her lack of alternatives. As things stand it looks like the crematorium has the edge, but we might have as much as 36 hours to come up with something more to her liking. I will keep an eye on her ankles for marbling in the meantime.

When is enough guilt?

One of the weird things about the place my mum currently inhabits is that some days we can have amazing conversations about absolutely nothing. She says things, or makes noises, or stutters and sticks on one word or syllable which is repeated for an extended period of time. For my part, all I have to do is agree, make noises, use minimal responders, and throw in the odd phrase; “really?” “did you?” “I don’t believe that!”. Granted, some days it’s absolutely impossible to have any kind of meaningful conversation because mum is completely catatonic. For the most part, I have allotted time to visit mum and I turn up and stay for the length of time I am want to spend with her. It really doesn’t matter how I find her, I am there to visit because it’s my time to visit and I want to spend time with my mum. However, there are other days and in particular the days when my mum is detached, days when even eye contact is mostly impossible, so if communication is impossible it begs several pertinent questions?

  1. If you are going to a hospital or care home and visiting someone who is uncommunicative, how long is a reasonable length of time to visit?

There is a simple equation for the length of time I will stay on a visit on the day’s when mum is catatonic, it goes like this:

Length of time (l) equals how happy I feel from zero-ten (h) multiplied by how guilty I feel from zero–ten (g) or l=h x g

So, if I am feeling pretty good, say a 7/10, and I am not feeling very guilty at all, maybe a 2/10 the length of time I would stay would be 14 minutes (although I would probably at least round that up to 15!)

I should make it clear that my mum was initially diagnosed with Alzheimer’s back in 2007, and she has been living in full time care for over two years. On average I visit her 4 times a week, prior to her admission into care I was with her every day for years, and the point of this clarification is to highlight how GUILTY I obviously feel! I don’t need to justify myself to anyone, and yet…..

This will obviously highlight to you the level of the equation that is almost always high, that being the guilt. This means that in general I am reasonably happy (say a 6/10) and my guilt is generally high (say a 7 or 8/10) so length of time would be 45 or 50 minutes.

  1. If you are spending up to an hour or more with someone who is completely uncommunicative, is it acceptable to mess about on your mobile phone?

The answer to this is obviously yes, same with laptops (I am writing this sitting next to my mum’s hospital bed. Ten minutes ago, I wrote up my reflections after supervision yesterday and my client notes from a session I had earlier).

  1. Is it ok to eat an uncommunicative person’s chocolate biscuits?

Once again, the answer is yes. If I am sitting next to someone who cannot talk, cannot move, cannot speak, and cannot even look at me, then there is a good chance I am going to eat their chocolates! However, I would refer you to question 1. The chances are eating my mum’s chocolates or biscuits is going to make me feel guilty, which will mean I end up staying longer (and possibly eating more of her biscuits!)

  1. Is it ok to watch the person you are visiting’s TV, particularly the football results on a Saturday afternoon?

Of course, next question!

  1. Is it ok to try to feel less guilty?

Of course it is, in fact, feeling less guilty is the ultimate goal. I strive to feel ok about doing enough, because honestly, I am not sure there is ever really enough I can do? I feel guilty about everything, and nothing. I just wish everything was different. I wish my mum was ok, I wish she had never been diagnosed, with Alzheimer’s, or at the very least made it into her 70’s so was able to enjoy about 10 years of her life with a little bit of a pension, a bit of travel to see her grandkids in Germany, was able to see me grow up, stop drinking, get married and become a therapist. I wish she was able to experience the wonder of Brendan Roger’s being at Celtic (she honestly wouldn’t care but I would tell her about it!). I wish she was able to see her granddaughter graduate high school and turn into an amazing, beautiful, intelligent woman. I wish she was around to see her grandson get as tall as his mum and move to a school in the UK. I wish she could notice her daughter go back to working in a job she really, really loves. I wish she could enjoy watching her other daughter running her own business and becoming a mum. I wish she was able to go see Mrs Brown’s Boy’s with her best mate. I wish she was able to help her sister’s when they really need her.

I wish things were different, but what’s the point in wishing? Life is hard sometimes, sometimes it’s easier. A few years back I decided that as much as possible I was going to try life on life’s terms, and not on how I wanted, hoped, or believed life should be. Mum will die sometime soon; the same fate awaits us all at some point. That’s neither good or bad, it just is.