My awareness and response to End of Life
By Pippa Moss, Senior Education Support Officer, St Christopher’s CARE
Working at St Christopher’s CARE, I support our training at an admin level (I am not clinical). Right now I couldn’t feel more grateful for this role and how it has helped me better cope with these last years. CARE stands for Centre for Awareness and Response to End of Life – it has been helpful to me to write about my response to my Mum’s end of life and I want to raise awareness about dementia journeys.
My wonderful mother died last week aged 76. She’d lived 4 years in a nursing home with Alzheimer’s disease.
Her dementia was very obvious from 7 years ago, she would have been 69 then. She started to get lost going to familiar places and seemed to be ageing fast – suddenly she was someone you felt you needed to grab the arm of to check they got to their seat OK. This wasn’t my Mum. My Mum would be the first to rush over when you entered a room, there with a big smile – a talented networker who so many people have recently told us ‘lit up a room’.
So much memory went so fast – Mum wasn’t living in the past like others might – in recent years she was living in the moment. Her verbal skills got very limited. For a while she could sing along a little to songs, but in the last year hardly any communication. I found it hard not knowing what she was thinking. However, joyfully we could still get a smile and a chuckle.
This last week since her death I have been reflecting on this journey and choices we have had to make along the way.
We needed help
The day we took Mum to the care home was the hardest day ever – when she could still talk to us but didn’t really know what was going on. We did this because Dad was really struggling and we didn’t want any more episodes of her wandering off, falling down, or facing the indignity of being in a mess or half dressed in the wrong situation. She needed supervision throughout the day and was in a large house. Hazards were everywhere.
Once this hard decision was in motion the momentousness of it hit. The freedom gone of what you can do together, the closeness you can have. I couldn’t just lie next to Mum on a bed for a relax. Instead you are sitting in a residents’ lounge or a functional bedroom on a strange chair. She lost the ability to walk within a year so she was hoisted into a wheelchair every day. I missed the random wanderings. Visits were limited due to Covid. Did the move into care fast-track everything? How will we ever know? We chose the best home we could.
When we sold the family house, we moved Mum to another nursing home nearer to my sister and Dad moved house too. This was a wonderful home and they took pleasure in knowing about who Mum was before the dementia, but in reality they were now seeing such a smaller version of the dynamic woman she once was. They still loved her of course as her warmth and smile broke through everything.
We visited often. A couple of times we did have to convince Dad that bringing her home again was not advisable when he worried he’d done the wrong thing – surely, we told him, we’ll just have all the same problems again and now worse with the lack of mobility.
In terms of decision-making – it’s been these last months when we’ve had to make a lot more, ones I hadn’t even anticipated.
A journal into the unknown
Mum has suddenly started having pain, she is regularly groaning and leaning forward. The doctor has visited – surely she needs to go to hospital for tests and scans? He advised us kindly that invasive testing isn’t in Mum’s best interest. If we find out something that inevitably might need an operation, what will we do? No-one will advise (or even allow) someone with advanced dementia to go through surgery. The distress to them for the quality of life they currently have, just isn’t justifiable. But equally it’s a whole new way to think.
We are used to identifying an illness and treating it, but now for Mum, we are just going to manage it. We are going to use morphine (via a patch and oral) – and you can use morphine for as long as it is needed which I didn’t know. The side effects are also managed and not a concern. I’m not sure this is a decision with options, I don’t argue with the doctor. I don’t push for the scans. We just decide the doctor is right.
I cannot pretend that I am not relieved, that with this unknown ‘thing’, Mum might have an exit from the further long decline ahead of her – I feel awful for even thinking this but I am being honest, thinking of what Mum would be wishing for herself.
So now a painful journey of pain management. The absolute essential thing we need to do for Mum. Trying to get it just right so the breakthrough pain isn’t too bad for too long. There is nothing worse than listening to Mum groaning for more than an hour, hoping the pain relief will kick in, knocking on the nurse’s door to ask if we can have more please. Calling the doctors or the local hospice team to up the prescription. There’s morphine but also a sedative that can help so they are doing both. It seems to depend on the day and time if you have a peaceful visit with Mum or a groaning one when you sometimes just feel powerless to help. We just want more drugs for her – instantly. Everyone is trying very hard to manage it, it’s just a complicated job. It’s clear to me why we hold a conference at St Christopher’s CARE called The Sharp End of Pain Control.
We are at the point where everyone is OK to talk about the fact that Mum is now at the end of life. It feels like the home are pleased that we said it first. We can now talk more openly about the weeks ahead.
From working at St Christopher’s CARE I feel more prepared – this is all the training that I support, in a real-life scenario, and I’m comforted too, knowing I have some of the best palliative nurses at my fingertips if I need advice.
Mum’s sleeping a lot of the time, no longer being taken to the lounge in the wheelchair, and she has mostly stopped eating and drinking. We agree that we are not going to try to keep putting food and drink into her as she’s obviously not interested and swallowing has become problematic.
Nearing the end stage of Mum’s life, all I can hope for is a little chuckle. And I get it on one visit and I treasure it.
We still think we have weeks to go but fortunately a nurse colleague at work, on hearing from me the status of things, says to me we are unlikely looking at weeks but more like days. This certainly shocks me but is so helpful – I share this with the family, shock them too, but it spurs us all into re-prioritising our time.
She’s now not eating or drinking at all and has a syringe driver giving her a constant feed of pain relief. I only know the words ‘syringe driver’ because of work.
Then the vigil starts and Dad reports Mum is sleeping but she’s doing ballet with her arms – they are raised elegantly up to the sky and I watch this on a video call and Google it – ‘terminal agitation’ – quite common at the end of life. Maybe Mum’s arms are so graceful because she did do a lot of ballet when she was younger? Anyway, that is enough to get me on a train from London that evening as it seems a sign that the end is near.
A lovely nurse at the home tells me that it won’t be as quick as I think. Without any additional crisis, someone without food and drink can easily last a week or more. I feel a bit crazy not knowing how long we’ve got and if we can keep Mum pain-free.
The importance of the vigil
I don’t know how I did it on reflection, but I still went away that weekend on a long-planned visit to my daughter at university, leaving my sister and Dad with Mum. I got back Sunday evening and was by her bed again on the Monday. We all were.
I was so pleased to hear Mum had had a blessing and communion from a priest over the weekend and although you wouldn’t have known she was even aware, this was essential – her faith was very important – she was even ordained at 66.
She definitely seemed different to 3 days previously – to be frank she looked like she was dying. She was sleeping even more and with her mouth wide open – this is common. Again I saw the value of the training we offer at work – mouthcare at the end of life – another skill I hadn’t realised is so important.
There are some disturbing noises made by people near the end of life, a little like choking, but the nursing home managed all this very well to make Mum as comfortable as possible. I know from the wonderful Dr Kathryn Mannix video we use at CARE, that this is all very normal. I showed my sister the video to help her too.
They say hearing is the last to go and we chatted to Mum lovingly, but with advanced dementia you sadly don’t know what is being understood. Touch felt more important and I stroked her lovely soft warm hand and her hair. The care home brought us tea and snacks. There were tears, memory-sharing, music and singing, and of course intense watching for the moment ‘it’ might happen. ‘You can let go Mum, we are all here.’
Then the awful decision in the evening about whether to go home – we were shattered. We just all sensed that she wouldn’t see the morning. I noticed her breathing rhythm had changed subtly. It had somehow been an incredibly special day, one I will remember forever, and one I am so grateful I didn’t miss. We had a group hug and said our heart-breaking goodbyes to Mum. I don’t know how we walked out of there but I think we also thought Mum might like some peace now.
The call came at 1am
We all drove back to the care home. We had to make a quick decision about this because the body can be collected very fast…within an hour or two. I caught my breath when I walked into the room. I went over to Mum to kiss her but she was so very gone. I just kept thinking about her recent warm hand, her chest rising and falling, it wasn’t much but it was life. There was no Mum there now.
But this realisation meant we could be practical and took the personal items from the room that we’d want to keep, avoiding a visit to an empty room the next day.
What a strange night. I did call the care home a couple of days after to thank them for everything – the manager shared how much she loved our family and would miss us.
It was what I think you would call a ‘good death’, and as a colleague at work said when I tried to justify us heading home that night – dying is a journey, not just that last breath. We’d all been on the journey with her and she would know that we’d been there with her along the way – for this final goodbye after the very long goodbye.
Reflection time
If you are having your own journey with a loved one with Alzheimer’s, I hope this gives you some insight into how things might go at the end and to know that I understand it’s hard to make certain decisions. We are never going to say we did everything perfectly during these years but it wasn’t for lack of love.
I feel the one and only gift Mum’s dementia has given to me is that with my years of anticipatory grief I am not now hit by a tidal wave of emotions that will bowl me over – instead I feel reflective and relieved. I feel full of love and gratitude for Mum in a very intense way and it’s like a warm blanket. Extra comforting because I can have these feelings without one half of my brain fretting about how she is doing today. Instead I know she’s at peace.
In these weeks since her death we are having the experience of the old Mum being brought back to us in all the tributes and messages. We are brimming with pride for the woman she was and what she meant to everyone.
I feel we’ve been in ‘limboland’ these last years. Years where Mum couldn’t remember anything about her past life or indeed who we were to her. We couldn’t mourn collectively – for her loss of this vital part of human existence of knowing who you are and what you have done in the world. Now instead we can collectively celebrate her full life before the dementia.
I have thought about this too – you can’t write off the last 4 years. That was part of Mum’s life, you could say a very cruel part. However, although her world got smaller and smaller, I learnt the value of a smile and a chuckle. It’s not much to give others when you used to be an actress entertaining, a business woman encouraging women up the corporate ladder, and later a priest giving comfort and amazing sermons – but if it’s all you can now offer it certainly can make a daughter’s day.
You may also be interested in
Biker hospice staff make patient’s year with rip-roaring show
Michael Renè got an early Christmas present from hospice staff.
Looking back: London to Amsterdam 2019
Hannah Sharp shares her memories of cycling for St Christopher's with her dad, Stewart
Welcoming Children and Young People at St Christopher’s
St Christopher’s has always been more than just a hospice – we’re a community space where everyone is welcome, whatever their age.
