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.