Dad’s Christmas drawing from 2018 – ‘Robin in a Tree’

Dear Readers, thank you so much for the support and love that you sent me over the past few days. I am so grateful, and it helps so much to know that people who didn’t even know Dad are sad at his passing. I will respond to you individually over the next few days and weeks, but for now, I wanted to just make a few comments on the things that I’ve learned from Mum and Dad’s passing, in case they are helpful for anyone going through the same things in the future.

Firstly, a book recommendation: Martha Jo Atkins’ book ‘Signposts of Dying‘ was my companion for the past few years, and I’ve lost count of how many times I’ve read it. It is compassionate, non-judgemental, and full of very useful information. It helped me to understand exactly what was happening with Mum and Dad, and with Mum it helped me to judge how close she was to dying. It also helped me not to be afraid when the so-called ‘death rattle’ started with both Mum and Dad. In fact, after these two experiences of being with someone when they passed I have become less, not more, afraid of dying. It seems to me that both Mum and Dad just walked through a door between this world and the next, and in my minds eye I can see them eagerly shuffling along the path, getting younger as they go.

Secondly, I was lucky to be with Mum and Dad when they died, but I do believe that people choose when to go. My Mum, for example, was extremely close to my younger brother. He had been sitting with her for hours, and when he got up to hand over to me and to get a few hours sleep Mum opened her eyes and looked at him, the first time that she’d done such a thing in days. My brother squeezed her hand and told her that he loved her. Less than twenty minutes after he’d left, Mum passed away, and I believe that she wanted to say goodbye to him, and to spare him her actual passing. So many times I hear of people saying that they just missed their loved one’s departure from this earth, but the dying have their reasons, and it doesn’t mean that they don’t love us.

Thirdly, if there is something that you want to do during this time, do it, or ask if it’s possible. I suddenly had the strong feeling that I wanted to help to wash and dress Mum after her passing, but wasn’t sure if this would be allowed by the staff at the nursing home. Of course it was, and I was able to do this for Mum and for Dad. It isn’t the right thing for everybody, but it is a time to rely on instinct, and if you feel drawn to something, don’t second guess yourself. I believe that giving Dad a head massage helped in his passing, and once Dad had died I spent a good hour cuddling him and talking to him. In this, I was helped by the staff nurse at the home, who said that it was important to just take some time, rather than rushing on to all the practical things that need to be done, and she was absolutely right.

Fourthly, don’t beat yourself up if things don’t go according to plan, and don’t sweat the small stuff. You cannot have too regimented an idea about what you want to happen, because you are not in control. Cock ups will occur, and most of them won’t matter. For example, when we got the death certificate back for Mum, cause of death was given as ‘dementia’, which it most certainly was not. I was furious, but, after reflection, realised that if we contested it, we would end up needing a coroner’s report and an autopsy, and Mum had had quite enough medical interventions during her life without being messed around with after her death, thank you very much. And so we swallowed it down, for everyone’s sake, including Mum’s.

Dad’s 2019 Christmas picture. He asked for a red pen for some of the baubles, because ‘it isn’t Christmas without red’.

Fifthly, do keep a sense of humour. The nurses and I were swapping tales of Dad’s naughtiness yesterday. For example, he managed to set off the fire alarms at the home not once, but twice, which means that all the secure doors fly open. I had visions of residents heading off in all directions. Dad was always scrupulously honest about having done it: when asked why, he said

‘Well, it says ‘break glass’, so I did’.

Dad’s favourite phrase, when telling me about the latest incident at the home (which could be, for him, a cruise liner, a hotel or an army staging post where they were all waiting about for their next deployment) was always

‘It’s chaos! Utter chaos!’

I didn’t realise that he’d caused most of it, though.

And finally, a personal bugbear. Ever since Dad was diagnosed with dementia,well-meaning people, some of whom I love dearly, have commiserated with me and told me that they hope that Dad won’t ‘hang on for too long’. Please, don’t expect me to be relieved that my dad is gone. Dementia does not mean that someone’s life was worthless, or that they are better off dead. I understand that the disease is progressive, and that Dad would have gotten worse with time. But somehow, I sense that he would always have been the pragmatic, laid-back soul that he was when he died, however ill he became. I was not the only one crying at the home yesterday: my Dad was much loved by many people who worked with him, and a stream of people came in to say goodbye to him as he lay ‘in state’ in his best linen jacket. I would have given anything for one more summer with him, and I know that he was enjoying his life immensely. It is heart-breaking that he didn’t have the opportunity for a few more adventures.

One of the carers told me that some family and friends don’t visit once a loved one has dementia, because they want to remember them as they were. I know that I was lucky with Dad, inasmuch as he wasn’t aggressive or unkind, and I know that some people do become very challenging once they have the disease. But I got to know the real, unfiltered Dad much more once he went into the home, and that this was a real delight, something that I’ll remember for the rest of my life.

Last spring, the home held a memorial service for all the people who had past away during the year, including my Mum. I attended it with Dad, and he held my hand tight right the way through. At the end, he turned to me.

‘We should do more of this’, he said, squeezing my hand, ‘But of course I’ve got to go away on the ship’. Dad was in the grips of ‘cruise-world’ at the time.

‘We will do more of it, Dad’, I said, and made sure that I held his hand or cuddled him at every available opportunity. It is a comfort to me, now, to know that I showed Dad how much I loved him, and that I spent time with him. My final, final piece of advice is, don’t leave it till later if you want to tell someone that you love them, or to give them a hug. Treat each opportunity as if it was the last one, because one day, it will be.

From tomorrow, I am going to go back to my Borneo trip because I have lots more lovely photos to share with you, and I want to write about while I can still remember. But a question that remains for me is this: what to do with all the love and time and care that I used to spend looking after Mum and Dad? What is going to give me a sense of purpose and fulfilment going forward? Let’s see.

Captain Tom with an alpaca

Dad aka Captain Tom.

12 thoughts on “Afterwards

  1. Pen Thompson CBE

    Thank you for the wisdom and humanity in this and all the other blogs. I agree with you . My experience of dementia and Alzheimer’s with my dad and step mum was also that the essential spirit and kindness shone through. And you are right – don’t delay showing and expressing love . Thinking of you . Pen

    1. Bug Woman

      Thanks Pen. I really feel as if I want to advocate for people with dementia – just because they aren’t as we remember them doesn’t mean that they are irretrievably lost to us. There is so much fear in the way that dementia is presented. I feel as if the last year with my Dad was one of the most precious times of my life. Be well, stay safe xx

  2. Anne

    Even in this very sad time for you, you have found a way of reaching out to all of us with gentle wisdom. Thank you.

  3. Gareth Davison

    Thank you for such a warm, loving and powerful piece of writing. I went through a similar experience losing both my parents to long term illnesses like this and I was genuinely moved to tears by your words which brought back so many emotions to the surface.
    I have followed your blogs for the past year or so and always look forward to your wonderful posts; I love your writing and the power you have to express things so beautifully.
    My condolences also for your loss and the heartache you are currently going through but thank you also for sharing it with us all, especially at this time of crisis and such despair that so many families are going through.

    1. Bug Woman

      Thank you so much, Gareth – I’m sorry to hear about your parents, it’s always so hard. And I think what this experience has taught me is that emotional isolation can be dreadful at times like these: by sharing what we’re feeling, we can sometimes help other people to realise that they aren’t alone, however individual our circumstances might be. I am so glad that the blog has been helpful, and thank you so much for commenting. It isn’t always easy to gird myself to write a post, but I’m always glad that I did.

  4. Christine Burns

    Thank you for such a warm and thoughtful piece on your father’s death. I can absolutely agree with what you say with my own mother’s death in my mind. To share these thoughts at a time of great distress for you is such an act of generousity. Christine


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