assisted dying, bereavement, care, care homes, caring, caring for the elderly, dementia, elderly parents, hospital, mental health, old age, stroke, vascular dementia, Work/life balance
It’s been another rollercoaster few months here, which may account for my absence on these pages, yet again. As some of you may know, my father lost his battle with vascular dementia at the start of the year and passed away in early January. Or perhaps I should say he won his battle? He’d been struggling with his mental health for the past three years, even before he was officially diagnosed, but in his lucid moments he was well aware that he was losing control and really hadn’t wanted to be here for a large proportion of that time.
My mum passed away very suddenly 16 months ago, as I wrote here (seems like no time at all) and my sister and I took the decision to put Dad in a care home, initially for respite care, but then, after Mum passed away, when it was clear that he needed full-time care and was enjoying the sociable side of living with other people, on a full-time basis. While this was definitely the right decision, Dad still had frequent bouts of depression, which meant the past year or so continued to be challenging. He often forgot that Mum had passed away, so we had to break the news to him all over again – heartbreaking… Or he’d sometimes wistfully ask if either of us could “accommodate” him? And with the best will in the world, we couldn’t – not with narrow stairs in a 30s semi in my case, or a full-time job in London in my sister’s. We’d tried being there with him when Mum was in hospital at the end of 2021 and it was impossible to work or do anything other than sit with him. He no longer understood the concept of work or even computers or mobile phones – what’s that little book you’re looking at? Who are you talking to? I couldn’t even take the dog for a walk. None of which stops you feeling guilty that you’ve outsourced their care, of course, even if you know it’s the only option and everybody tells you you’re doing the right thing.
Dad initially settled well in the care home and most of the staff were kind, helpful and cheery, plus he met an old friend from his Probus retired businessmen’s club on his first afternoon, so he and Dad became inseparable in their waking hours, usually to be found sitting together in the lounge – just what Dad needed after years of Covid-forced isolation. As a venerable older statesman of the home at 99, Laurie had assumed the role of head boy, with Dad soon taking on the role of senior prefect – heartwarming to see. They made a formidable team in the weekly quizzes, sweeping the floor between them, with Dad majoring in geography as ever. Dad’s dementia wasn’t formally diagnosed until January 2022, when we finally received the official results of our private assessment (the NHS having persisted in their ‘low mood’ diagnosis), but the home were initially happy for Dad to stay on the residential ward of the home, where he could interact normally with the other residents.
Despite losing Mum, Dad’s mood remained mainly good until February 2022, when I was over sorting out their house to let and received a call from the home to say Dad had taken an overdose and been rushed to hospital (not serious in the event). It turned out that he’d managed to secrete some of his old medication into his pockets when we’d taken him home a few weeks earlier to see what he wanted to take back from the house. I’d seen the box of medication, but it never crossed my mind that he would dream of doing something like that. These February bouts of depression had become something of a theme since 2020; it was always around the same time of year that we’d had the cries of help from Mum, first culminating in Dad being admitted to the geriatric mental health unit in Hastings (and nearly sectioned), then another ambulance callout the following February when he tried to throw himself down the stairs. It was only when I was going through his papers before meeting the celebrant for his funeral this February that I made the connection: his father had died on 19 February at the age of 59 and Dad had had to come back early from his National Service in Germany, a time he had loved as it opened his eyes to all the opportunities out there in the big, wide world. I’m sure that, subconsciously, that time must have been associated with great sorrow and loss for him and triggered these deep lows, even if he wasn’t able to explain that to us.
The care home were initially reluctant to take him back after this stint in hospital, citing safeguarding issues and obviously concerned that this had happened on their watch. We had no idea where he could go if they wouldn’t take him, as other institutions would have seen the notes and presumably had the same concerns. In the end, after reviewing the case, they did agree that he could return but subject to strict conditions like removing anything he could possibly harm himself with like belts, mobile charging cables, table lamps and their power cords… This in turn led Dad to feel that people were taking things from his room and checking up on him excessively, which, as a proud man, he hated. There were also conflicts with certain members of staff he took a dislike to.
Life returned to a more even keel for the time being, my sister and I alternating our visits as usual, but always on the alert for phone calls to say he’d had a fall, or was feeling particularly depressed that day. In May, when I took my niece in to see him after we’d had a particularly lovely girls’ spa day with my sister and other niece (a delayed 60th birthday present from my sister, but we hadn’t had chance to use it until then due to losing Mum and all that had happened in the meantime), he’d reached another low, refusing to get out of bed, room in darkness, and saying he didn’t want to be here any more. My niece was horrified as she’d never seen him like that before. The NHS Mental Health team were summoned and the care home said they’d have to charge us 1:1 rates on top of his usual fees as he couldn’t be left unattended. Given that we were already paying around £7,000 a month, this would have meant an additional £13,500 on top – clearly unsustainable! My sister and I leapt into action and arranged to visit other care homes, but they all said they wouldn’t take someone who was currently under 1:1 care – and in any event, neither of the ones we saw seemed to have the right environment for Dad. Moving dementia patients is always fraught with risks as routine is one of the most important things and there’s no guarantee that a new place will be any better… Fortunately, after several meetings with the Mental Health team, who prescribed new medication in the form of sodium valproate, an anti-epileptic drug, the home agreed to stop the 1:1 supervision and Dad eventually calmed down again.
Unfortunately, in mid-summer, I received a call from the home to say that Dad had started being aggressive to other residents and they’d taken the decision to move him up to the dementia ward, where they were better equipped to deal with more challenging dementia patients. We knew that this would happen at some point and appreciated them keeping Dad on the residential ward for so long so he could be with his friend, but Dad found this move particularly hard. He used to call the other patients on the new floor ‘the pensioners’ (as if he wasn’t at 88!), but most of them had significantly worse behaviour than Dad, so we did understand his distress. We were told he could go downstairs to the residential lounge if his mood allowed, but he increasingly withdrew into himself and refused to engage. Inevitably, part and parcel of this stage of dementia, his behaviour worsened: he hit another resident’s visitor with his Zimmer frame on one occasion and developed paranoia that staff were out to get him – nothing unusual for this cruel disease, we read. Visiting him was a lottery – sometimes he’d be like the old Dad, reminiscing about old times, happily looking at old photos, whereas on other days he’d be down in the dumps, complaining that he had the ‘wrong trousers’ (he didn’t), his belts were missing (they’d taken the buckles off them so he couldn’t harm himself) or his TV remote didn’t work – before sheepishly confessing that he’d taken the batteries out and thrown them out of the window in a fit of pique!
All the time, his physical health was deteriorating: he was having more frequent falls and broke his collarbone after one such instance in late summer, resulting in yet another traumatic trip to hospital. We’d already decided by that stage that taking him out of the home to either of our houses (an hour away in my case, thirty minutes in my sister’s) was too confusing for him and did more harm than good. On the last occasion, in early August, when my younger son was over from the US and my other son and daughter-in-law were expecting their second child any day, he seemed quite agitated and had forgotten that he lived in the care home when my sister drove him back, telling her that she’d missed the turning for their old house…
The number of incidents and falls increased over autumn and Dad was in and out of hospital, including one stint in December when he was in a cheery mood when I went to visit him, but told me he was in a pub and they were trying to force him to have a drink, even though he hadn’t touched alcohol for months! After that, I had a long chat with a consultant who suggested we change his medication as he was at more risk from falls than strokes. We agreed – we’d long thought that the cocktail of drugs he was taking needed reviewing and could be doing more harm than good. Sure enough, his mood seemed to take a turn for the better with the new medication: I went in to see him the week before Christmas with my sister and niece, just before I flew out to visit my younger son and family in Boston. Dad was on good form, although he seemed very confused about who we all were: my poor niece, at 21, was variously addressed as her grandmother, mother and herself, even though my sister and I were there too. Leo the dog clearly thought canine assistance was in order as he jumped on the bed and lay prostrate on Dad’s legs throughout – there’s nothing like the comfort of a furry hound on your bed. As we left, I had a strong sense that that might be the last time I saw him…
In the event, it wasn’t the last time, although it might as well have been. My sister and family and my son and his family both went in to see Dad over Christmas and I spoke to him over the phone from the US. He was on excellent form, interacting with his baby great-grandson and actually holding him, something he hadn’t been interested in doing when we first introduced him to Rupert soon after he was born.
Then, on New Year’s Eve, I had a call from my sister to say Dad had had a massive stroke and was in hospital; the prognosis wasn’t good. She’d popped in to see him that same morning and he’d been in good spirits, but the carers had found him on the floor in the bathroom that evening. The consultants phoned me the next day and confirmed that there was no chance of any meaningful recovery, although they did say we could try a revolutionary new drug or take him to one of the London hospitals for surgery. Bearing in mind that Dad really hadn’t wanted to be here for the past three years, and with his advanced dementia, plus the knowledge that he had refused any form of surgical intervention since having his knee replacement 10 years ago, we agreed that palliative care was the only sensible option.
I managed to change my flight to fly back a few days early and landed on the evening of 2 January, to be picked up from Heathrow by my elder son. We drove straight to the hospital to see Dad (calling at McDonald’s en route for some much-needed sustenance – anyone who knows me will appreciate how desperate we must have been, but there was nowhere else open within our time constraints!). I knew from seeing my sister’s face on Facetime that Dad would be in a bad way, but it was still hard to walk in and see him lying there – he was unable to swallow or speak and clearly a very sick man. My son found it hard to watch for more than a couple of minutes, but I sat with Dad and held his hand, talking softly, for some time. I don’t know whether he knew I was there – I hope so.
Thus began the routine for the next few days: my sister and I taking it in turns to go over and sit with him, sometimes together, sometimes with my nieces. It was hugely traumatic as he was often highly agitated, jerking his limbs and trying to throw himself out of bed – I don’t know where he found the strength. On two occasions he actually did manage to land on the floor but fortunately didn’t cause any more damage. Sometimes he seemed to know who we were and hugged us, but most of the time he was in another world, thrashing his arms and legs around and generally battling his condition. Ironic that he’d wanted to terminate his life on numerous occasions the past few years, yet his body fought until the bitter end. The palliative care team had told us that their aim was to keep Dad ‘comfortable’ via medication to calm the agitation and ease the pain, but it was clear to us that the medication he was given wasn’t anywhere near enough. Dad was down as ‘nil by mouth’ and they withhold all food and liquids, even by drip, in these cases, as otherwise it prolongs the agony. I get that, hard though it was to see, but watching someone die over ten long days was one of the hardest things I’ve ever had to do. If I wasn’t in favour of assisted dying before (which I was), I most certainly am now. Not increasing someone’s morphine because you have to be seen to be following the rules is one of the most inhumane things I’ve ever experienced. I know doctors have to be careful, but still – they’d already said there was no chance of recovery, so why prolong the suffering? You wouldn’t treat a dog or cat like that, yet humans have to suffer to the end. I should add that the staff were unfailingly lovely and so kind to Dad and to me – one nurse made me cups of tea and brought me sandwiches, making me go and sit in another room as she said it was too much to watch a loved one like that for any length of time.
In the end, Dad died on 12 January. I’d been sitting with him all afternoon, with my knitting, and he was peaceful for once. He’d been moved to a different ward, one that was less acute where staff would have more time to keep an eye on him. It was another dark and rainy day, and my journey over to Redhill Hospital involved lots of narrow side roads, road closures and ever-present potholes, so I didn’t want to stay too late. I kissed him goodbye, told him I’d see him soon and for some unaccountable reason said ‘Thank you for everything’. Half an hour later, I had a call to say he’d gone. Typical Dad, that he wanted to go in his own time and not with his precious daughters watching – so many people have told me that their parents waited for them to go before they drew their last breath. And even though we knew it was coming and we didn’t want him to suffer any more, it was still a huge shock. I cried all the way to my sister’s house and spent the evening with her: comfort in shared memories with the person who had known him almost as long as me – the right thing to do.
Rest in peace, Dad – it really has been a battle over the past few years. We’ll miss you immensely, especially the lovely, kind and generous man you were before dementia tightened its cruel grip, but most of all we’ll remember the countless happy times we’ve spent with you over the years. You really were the best dad and always there for us, no matter what. Your legacy lives on in us, your grandchildren and your great-grandchildren – thank you for everything.
Deborah Nickson said:
Dear Claire, my heart goes out to you and your family, and anyone going through a similar situation. Thank you for sharing your story.
Thank you so much – like many wordsmiths, I find writing things down really helps process what’s happened. Thank you for reading and commenting – it’s much appreciated 🙂
Danae Seemann said:
Condolences for your loss (well, losses), Claire. It has been a rough road, to be sure. So glad you have your sister close by to share your journey of coming to terms with losing both parents. Hugs to you.
Thank you, Danae – much appreciated. It’s been a tough few years….
Nelia Fahloun said:
Dear Claire, what a heart-wrenching post to write this must have been for you. I am so sorry that you’ve had to go through all this, with your Mum, then with your Dad, in such a short period of time.
I too was already in favour of assisted dying before my partner lost his mother last year, and I am now more in favour of it than ever before (France might change its law on the topic in a few months, but this is a very complex and sensitive topic, as you can imagine).
May both your parents rest in peace, together, and may your grief and your family’s come to diminish with time. You have such wonderful memories of your parents, as you regularly share on Facebook.
Thanks, Nelia – I know you had a tough time with your mother-in-law too. In some ways, losing Dad has enabled us to grieve Mum all over again as we almost had to put our own grief on losing Mum on hold to be strong for Dad. I’m also glad to think of them reunited and as you say, we have so many lovely memories which are what we’ll carry forward as the hard times fade…
I hope your family are doing likewise x
Alan Toft said:
A lovely article on a very tough time. I hope I don’t put my wife and sons through that.
At the same time I’m glad I saw him last summer – you and I smiled at a few of the things he said, but it was heart-rending at the same time.
I remember being with another one of common relatives an hour before they died. He was in a terrible state and the nurse said ‘Don’t worry, the right medicine is coming soon’. That gave him peace and I agree that it’s inhumane to let people suffer when there is no hope.
Much love. Alan
Thanks, Alan – I enjoyed our visit to see Dad last summer too, and I think he did too, even though he was quite confused at times. He was convinced you and I were married afterwards, even though I told him Sally might have something to say about that! Poor Dad….
What a tough time for you, your sister and your dad to have to go through. May you find peace after writing this down.
This afternoon I have been to to say farewell to a 100-year old man who is dying. What a difference. He has been kept lightly sedated and sleeping for the past two days since things took a turn for the worse. Luckily he is not in pain. He is also nil-by-mouth, but at least peaceful and not agitated (except when carers have to change him). I hope it does not last too long for the family’s sake.
Living in the Netherlands means I am well aware of (and fully support) assisted dying. The official procedures are well described and very strictly monitored. However, they don’t work for dementia patients unless the patient has discussed things with their GP before the dementia set in and signed all the necessary forms. It’s still something that many people shy away from thinking about. How do you know when it’s the right time to act?
My partner, who had stage 4 colon cancer, did go through the formalities with his GP and they discussed things regularly every few months over the five years he was being treated. Luckily, at the end, the forms weren’t needed and he was treated with morphine for the last week, with an increase in dose only the day before he died. It was as peaceful an end as one could wish for and he was still at home.
The best book I read in those years was “Being Mortal” by Atul Gawande, from an Indian family and a Boston surgeon. It covers old age and end-of-life care. I recommend it to anyone who needs to think about these issues. Gawande has also given Reith lectures and other information can be found via Google.
I hope the Spring brings you some sense of the circle of life and the comfort that your parents’ lives continue in your grandchildren.
Take care, Jackie
Thanks, Jackie – the Dutch system does sound eminently sensible; so much nicer to have a peaceful, dignified death. I see the point about dementia patients, yet that’s one area where no one would really want to go through the indignities and cruel twists and turns of the disease. Dad did have capacity in the early stages and was adamant that he didn’t want to be here and deteriorate further, but, given UK law, there was nothing we could do, either then or later, to help him. I know it’s terribly complicated and there are bound to be grey areas, but moving towards the Dutch system would be a huge step in the right direction.
Eleanor Johnston said:
Such a moving piece to read, Claire. I don’t know where you find the strength! Condolences on your loss. May he and your mother rest in peace.
Thank you Eleanor – it just wrote itself really, not what I’d intended to write at the outset, but clearly what my brain wanted to say. I’m so glad they are reunited and at peace now, as you say.
Just read this moving account, Claire, and don’t know what more I add…. I agree with your comments about assisted dying (I keep meaning to join Dignity in Dying – the Swiss and the Dutch have shown us the way, and I dread the thought of being in the awful situation that you so eloquently describe).
You’ve really suffered over the past couple of years and have done well simply to keep your head above water.
I expect you’re still grieving but soon it will be time for you to enjoy life again… don’t work too hard, and treat yourself to plenty of time off and holidays in the coming months.
Hope to see you later in the year.
Best wishes and “well done, you”…
Thank you, Mike – you just have to keep going, don’t you? I’m sure you did the same when your mum was in her final years. My sister and I were saying yesterday how it’s strange now it’s all over – your life is suddenly back to normal, yet it’s a normal you no longer recognise as you feel you should be rushing around, caring or worrying…. We’ll get there in the end, I’m sure! Currently recovering from a sprained ankle – something is trying to tell me to slow down, I think 🙄
My condolences, Claire! My father passed away in November under similar circumstances and it’s been a strange, blurry rush since then. Your piece gave me the wonderful opportunity to just sit for a moment and feel the sadness. Thank you for taking the time to write everything down. All the best for you!
Thank you, Else – my condolences to you too. And you’re quite right, sometimes you just need to sit there and wallow in the memories, plus feel the sadness. I know it will get better in time, but it’s a strangely rootless sensation for me at the moment….
Thank you for a beautifully moving tribute to a lovely man, Claire. I hope getting it down “on paper” helps you come to terms with everything you’ve been through and lost in the past year or so. There always seems to be some element of guilt when a parent passes away, but you and your sister couldn’t have done any more to make your Dad’s last few months as happy and comfortable as possible. He must have been so proud of you both – and of his wider family. Time for you to take it easy for a while.
Thanks, Moira – it was definitely a cathartic process. We did our best and that’s the most you can do – and he was enormously proud of us, we know that. At first during the last 12 days, he was in a cubicle off the main stroke ward (designed to give him and us privacy, but in the end they had to move him back onto the main ward as he was so agitated he needed to be supervised round the clock to stop him falling out of the bed – even with hospital sides!). On one occasion when I was there with my sister and both nieces, he started beckoning with his one good arm through the windows at the nurses, even though there didn’t seem to be anything they could give him or do for him when they came – then it occurred to us that he was probably doing what he always did when we went into the care home: introducing us to new people 😦 Old habits die hard, it seems, even after a stroke….
That was nice, very touching. The older I get, the more I wonder about how much control any of us have in the end. No one ever knows, I suppose. My condolences for your loss.
Thank you – I don’t suppose we do, but some more than others, perhaps.