bereavement, care, carers, caring, caring for the elderly, covid-19, death, illness, juggling work and care, self-employment, work-life balance, working from home, working practices
I should probably start by saying Happy New Year – and then apologise for being absent on the blogging front for so long last year. I, like many others, am sincerely hoping that 2022 will be a huge improvement on the last two years, which have been disastrous, not only on the mass humanitarian front with Covid and its associated woes, but also on a personal front. Some of you may be aware that my father, now 88, has been struggling with his mental health since just before Covid struck in March 2020, but, sadly, it was my mother, his main carer, who passed away very suddenly in November 2021. Let me begin by explaining the back story behind recent events and then in another post I’ll set down my strategies for coping with these additional caring responsibilities. I know from colleagues and social media that I’m not the only one facing work-life balance challenges in the later stages of my career….
Despite having coped with the lockdowns for much of last year without too many issues, my father’s mental health deteriorated still further in February of last year, with recurring depressive episodes resulting in 999 calls and visits to hospital. I suspect there were many more crises that I didn’t get to hear about as my mum was of the generation who grit their teeth, keep a stiff upper lip and soldier on. She took the view that she’d married for richer for poorer, in sickness and in health, and felt it was a sign of weakness to give in and ask for help, even from her daughters sometimes. When she did call out to us, it was often when she herself was under the weather, usually with intermittent stomach pains that had previously been diagnosed as gallbladder problems. With Covid raging and in-person GP appointments like hen’s teeth, she was usually diagnosed over-the-phone antibiotics or (worse) laxatives and recovered with careful diet management, avoiding anything too rich or dairy products. We tried so hard to get her to go for further tests, but she was adamant that she didn’t need to – and it’s nigh on impossible to make someone do something they don’t want to, even if you think it’s in their best interests. And of course, the current health climate means nobody really wants to visit hospital if they don’t have to…
The upshot of all this is that she ended up going to A&E with severe abdominal swelling and acute stomach pain in mid-October. As it happened, it was the very day I returned from my epic trip to North America to be reunited with my younger son and daughter-in-law and finally meet my newest granddaughter, born in New England in June. My sister had held the fort during the five weeks of my absence and my parents had seemingly been fine all the time I was away. Mum was keen for me to go; she, if anyone, knew how much it means to be with family. She adored her first great-granddaughter, Zoë, and was so looking forward to meeting Baby Emma when restrictions allowed. I ended up going to Canada for two weeks before I was permitted to enter the US, hence my five weeks away – bliss at the time (multiple PCR tests and associated anxiety notwithstanding!) but little did I know what was waiting for me when I got back…
I’m not going into all the agonising details of the next three weeks, suffice to say that she died three weeks later and was ultimately diagnosed as having metastatic cancer, i.e. it had spread throughout her internal organs. Who knows whether an earlier diagnosis would have helped? Possibly not at the age of 86, and we can only be glad that her suffering was relatively short in the end, although it felt devastating at the time, both for Mum herself and for us as bystanders. At least we had a brief time to come to terms with her imminent loss and to say the things we wanted to say – I know many people don’t have that opportunity, especially over the past two years… My sister, nieces and I spent Mum’s last few days at her bedside, doing crosswords, chatting and reminiscing, and I know Mum was aware we were there, even if she didn’t say a lot. I was lucky enough to be there the afternoon she died and am very grateful to the lovely nurses for it being as pain-free and peaceful as possible. And for opening the window when she died “to let her spirit free” – something I can’t think of even now without welling up. Rest in peace, Mum.
In the meantime, we’d had to take the difficult decision to move my father into respite care as he needs full-time supervision. My sister and I had taken it in turn to stay in the house with him during the first week of Mum’s hospital stay, but it was soon apparent that it was impossible to do anything other than look after him – work just wasn’t an option as he doesn’t understand the concept of working remotely, let alone Zoom calls or even talking on the phone. Neither of us is in a position to retire any time soon and moving him to live with us wouldn’t have been the right answer either.
Then there were the problems of visiting Mum with him; obviously he wanted to see her, but, thanks to Covid, there was only supposed to be one named visitor per patient. Obviously, my father couldn’t go on his own as he no longer drives and needed a wheelchair to cover the miles of hospital corridors to get to the ward! If we accompanied him, we had to stay outside in the corridor while he was in with Mum, but neither of them could hear each other very clearly due to mask-wearing. Then Dad wouldn’t remember what she’d said afterwards for us to find out whether she needed anything or how she really felt. After being his carer for so long, there was no way Mum would have given him the true picture… Although she did have an iPhone, reception was patchy and connecting to the hospital Wifi not straightforward, so it was tricky to speak to her otherwise. The nurses did exercise discretion, thank goodness, and we were often allowed to put our heads in for a quick word before leaving, but it certainly wasn’t ideal.
Fortunately, we’d visited a local care home in the summer, thinking Mum might need to go into hospital for tests, if we could ever persuade her. We managed to arrange respite care there relatively quickly, thank goodness. Neither my sister or I slept the night before we told my father what we’d arranged, but his psychologist suggested we stress the positives and switch the emphasis to it being his turn to help Mum – which worked beautifully. And wonder of wonders, he met a chap he’d known for years from the Probus retired businessmen’s club that first afternoon. It’s not all been plain sailing, but I have to say he has settled really well and is much more stimulated and engaged than I’ve seen him for a long time. He has always been a sociable man and the past two years of Covid-induced isolation have been hard for him, along with deteriorating health and the sense of not being in control of his own destiny. We have now signed a permanent contract with the home, a lovely place where the staff have endless reserves of kindness and patience. He loves the food, the company and the fact that there is always someone different to talk to, to say nothing of visiting dogs and even a large pig called Blanket (what else?!). The home is located midway between my sister and me, so convenient for visiting. Now we just need the restrictions to ease so more members of the family can visit, but I suspect that won’t be for a while yet.
I’m still wading through estate admin for my mother and the lengthy process of registering power of attorney for my father with all the various institutions. Dealing with the house will come later, but it has certainly been a challenging end to the year. I’ve worked very little since flying out to Canada in early September and am only now hoping to resume working anything approaching full-time this month.
As I mentioned at the outset, my aim with this post had been to share my coping strategies, and especially my hard-won tips for navigating the care/support system for the elderly in the UK, but that will have to wait for next time. Wishing anyone going through similar life events much strength and comfort. My family, friends and colleagues have been wonderful throughout, and I couldn’t have done it without them.
Caroline Cronin said:
Hello Claire I know you very slightly from my ITI participation and have enjoyed your blogs and appreciated your CAT tool advice to me and others. My condolences to you for the loss of your mother. It must have been a great shock to have lost her so quickly after her diagnosis but perhaps some compensation that she was, in the event, spare long and difficult treatment.
Just wanted to let you know that I am going through similar experiences with my mother. I don’t think you realise (how can you?) until you get to that age – if you’re lucky enough to have had your parents around for so long – that apart from the emotion and bereavement, how incredibly time-consuming it all is. My wonderful father died 6 years ago in a hospice: he was looked after beautifully and that in itself made the loss so much easier to bear. My mother has lived on her own ever since some 2 hours away from both myself and my sister. This year at the age of 93, she has finally been persuaded (long story short) to move into residential care and after much consideration, we decided it would be best for her to be closest to me in Bath near where she grew up so not unfamiliar to her. She found the transition to residential care very very hard – she was confused by it and extremely homesick. It was just awful – I’ve spent the last 6 months often in tears over it. I feel guilty about it every day even though we knew she couldn’t continue where she was and her friends all reassured us we were doing the right thing by her. We had to then sell her house fairly swiftly after to pay for her care; that has all happened now – thankfully it was very quick and smooth but also emotional as that was our family home – the end of a 51 year association with Leamington Spa for us all.
Thankfully my mother is now more settled; I’m able to visit her frequently, as can my sister and we feel relieved that she is being properly cared for and close by.
However I do want to empathise with you about the time-consuming paperwork and everything else that goes with it. Luckily I have my sister and we have worked well together – but there are whole days when that’s all we both do! Google spreadsheets have been our friend sorting out care, finance, house clearing etc etc – we’re both love a list fortunately so we’ve been well organised – but there is so much to do and nothing is ever simple.
I think the most helpful advice I received – perhaps counter-intuitively! – was that “there is no manual” – you just feel your way through, talking to people going through the same things, look at Age UK, take advice from care home staff, friends, colleagues and the sage advice of “taking one day at a time”. Knowing there isn’t a manual (as there also isn’t for parenting!) somehow helped me to have to trust my own decisions : there isn’t one “right” way of doing things.
I also sympathise from the work side of things. I’d always wanted to take up translation more seriously but had never had the opportunity earlier. Finally I was able to do an MA in Translation and working on the basis it’s never too late I’m trying to set myself up as a freelancer now. My children are much older and so of course it would be much easier – I didn’t realise that my daughterly responsibilities would then take over! And It’s not a burden – I want to look after my mum – but it makes it difficult to be reliably available for freelance work. I put it all on hold for the last few months to focus on her and her needs – but I hope to get going again properly in 2022.
I hope you don’t mind me writing to you – whilst we don’t know each other that well I think we can relate to similar issues. In the spirit of asking for advice, please do feel free to contact me if you do have anything you want to discuss especially with regard to the practicalities of arranging care and the myriad of paperwork associated with it all. My sister lost both her in laws this year too so has been sorting out 2 houses and much paperwork. Fortunately, her acquired experience dealing with her in law’s affairs has been of help in dealing with our mother’s – the silver lining to the cloud I suppose.
I hope your father is settling well and I’m sure you must miss your mum terribly It sounds like she and your father had a lot to cope with with his mental health struggles which couldn’t have been easy for either ofthem. I hope you can take comfort in the fact you had her around for so many years and that you were able to spend time with her at the end.
With all good wishes
Thank you, Caroline, for such a lovely reply. I’m so glad you wrote at such length. I’m aware from other colleagues that a number of us are going through similar experiences and it’s reassuring to know that others are treading the same path and to know we have people we can reach out to if necessary. I really appreciate your kind offer. I’m glad your mother has settled at last: it’s not an easy decision to make and even when you know deep down that it is the only solution, it doesn’t make it any easier to bear. Like you, I have a sister sharing the burden of sorting everything out and it does make things a lot easier – a trouble shared and all that. Still, we both end up in tears at times and worrying whether we’re doing the right thing, but it’s so helpful to have two pairs of hands and two heads are definitely better than one in these situations. The paperwork is mind-boggling, as is the amount of incompetence I’ve had to deal with from various institutions who really should know better – but that’s definitely a subject for the next post!
We all miss Mum immensely, but our memories are very precious and we do feel lucky that we were able to have all those years and particularly those special days together at the end. She was able to attend both my sons’ weddings, which is rare enough, as the wedding photographer kept reminding us, and was thrilled by the births of her two great-granddaughters, even if she didn’t manage to meet the latest new arrival in person. She told my son on the phone that she felt she knew her anyway through Facetime, videos and pictures – thank goodness for technology!
I look forward to meeting up with you in person at some point – if we’re ever allowed to get out again! Are you intending to go to the ITI Conference in Brighton? I have booked and do hope it all goes according to plan and I’m in a position to go this time. I missed the online conference back in May as it coincided with another of my Dad’s mental health crises. I was so sad to miss it, but grateful for all the colleagues who helped me out with work and my room angel roles as a board member.
All the best, and thanks again – much appreciated.
Mrs Caroline M Cronin said:
You’re very welcome Claire and thank you for your lovely reply – your blog touched a nerve with me needless to say! Glad you have some very happy memories of your mum and no one can ever take those away. And it’s comforting to hear from you about the emotions surrounding the decision for a parent to move into residential care. On the plus side, my mum was able to come and spend Christmas with us this year (LFTs all round) – last year she had to spend on our own. She made light of it but we felt terrible. This year was much better!
I would like to make it to the ITI conference this year as I’ve never had the chance to meet in person any of the lovely ITI translators I’ve got to know virtually except for my local group! What a lovely bunch of people and such a supportive community. I’ve got so much out of ITI and hope to give back one day!
Hope to meet you soon and in the meantime good luck with the continuing task of sorting out, caring and paperwork. One day at a time…
All best wishes
I’ll keep my fingers crossed for Brighton in that case, Caroline – the ITI conferences are so enjoyable and career-affirming, so I hope we both make it! Otherwise perhaps a GerNet event, although they’ve all been online recently. One of these days, meeting in person won’t be such a big thing, I hope!
Jackie Senior said:
When my mother finally had to go into a care home someone said to me, “Caring for a loved one can also mean ensuring they get the best care from someone else. It doesn’t mean you have to do it all yourself.” I was so relieved to hear that. It took away a lot of the guilt, even though, by that stage, we’d realised caring for her in her own home was no longer possible.
It is hard, but like learning to be a parent, you do the best you can, one step at a time.
Mrs Caroline M Cronin said:
Thank you Jackie – that is really wise advice and very kind of you to offer it – I am trying to take a bit of a step back and let the care home do their job too. It’s almost exactly like not getting too involved with school too which I also tried to avoid if I could! It sounds like you know what you are talking about and it was very comforting to hear it – thanks again.
This is so true, Jackie. We are not all cut out for nursing or intimate caring tasks and we definitely shouldn’t feel guilty for acknowledging that others are better able to fulfil that role. We can care in different ways. And absolutely, one step at a time – we all have to find out what works for us 🙂
Sarah Bowyer said:
I was very moved by what you wrote and I’m sending you a big hug, Caroline.
Mrs Caroline M Cronin said:
Ah thank you Sarah – I know you too have had to bear the loss of your grandmother too this year. So kind of you – hopefully we can meet up in Brighton (if you’re going) and have a proper meet up too!
Sarah Bowyer said:
A lovely blog, Claire. And what a tough year. I’m sorry for your loss. We had a very similar situation with my grandmother in the spring: an initial diagnosis was difficult to get and she (quite understandably in many ways) refused to go to hospital until it was too late. The estate management/house sale etc. has been emotionally tough and time-consuming. What has worked for us has been to take things relatively slowly, trying to find pleasure in the memories we’ve uncovered along the way. I’m glad it sounds like you’ve found a good solution for your father. I look forward to reading your blog about coping methods – I’m sure it will be useful to so many.
Thank you, Sarah. I’m sorry to hear about your grandmother too: from your earlier post on Instagram. it sounds as though your mother and I are a similar age so I imagine your grandmother would have been a similar age to my mother and that generation tend to be very proud and to think they can manage, until it’s too late. I agree too about taking things slowly: that’s exactly what we’ve been doing, if only because it’s far too much to consider doing in one go. The funeral was our first priority and now I’m making slow but steady headway through the estate management. I shall know where to come if I have any questions!
Sarah Bowyer said:
If there is any way I can help, it would be my pleasure. Please don’t hesitate.
I’m very sorry it was such a tough year for you and your family, Claire, but I feel sure you’ll cope with everything as well and gracefully as anyone can.
I want to say “now you’re starting to work again, give me a shout if you suddenly realise you can’t cope with any French-English project”, but my workload this month is all but impossible anyway. However, I’m sure you know plenty of other people who’d be happy to help out, if you need a bit of backup. I feel bad for not offering sooner!
Thanks, Jane, much appreciated – and please don’t feel bad; I’ve been able to pass work on to colleagues as and when, and I’m very grateful for all their help. They know who they are! Having a good network you can rely on is definitely one of the most important things when life goes pear-shaped for freelancers!
Alison Trujillo said:
Thank you for sharing your story, Claire. You are navigating the situation with grace and the ability to be realistic, which I greatly admire. I’ll definitely be taking this experience to heart as I think about how my own freelancing career will surely experience changes throughout the years. It’s an important reminder to not become too attached to one particular schedule or expectation. Wishing you a happier 2022. -Alison (ES>EN translator)
Thank you, Alison. that’s very kind. I suppose we all have to find a way of coping that works for us, but support from friends and family is definitely up there as one of the main coping methods. As we all tend to live longer these days, many of us are also facing that sandwich generation scenario where we’re helping out with grandchildren as well as caring for elderly relatives. Definitely not ideal, but needs must! All the best to you too 🙂
Gosh, yes, you’ve had a full year Claire. I hope writing about it has helped put it in perspective a bit.
My unasked for advice: However much work and admin and visiting you have to do, do also try to fit in a few hours of me-time and relaxation every week. You need to see it as a marathon because you don’t know how long it will all last, so you do need to keep yourself going too. That was the hardest part of my being a carer for my partner, a cancer patient, for 5 years.
That’s very tough, but I think you are too. With support from family and friends like that you must feel very thankful. Sometimes endurance is called for. I wish you that and good luck.
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Wow what a time you’ve had in recent months Claire – you deserve a medal for simply staying sane in the face of such a combination of multiple stresses, never mind finding the time to document all this Operating Experience (can’t stop the nuclear terminology creeping in! 😉 ) for the benefit of others…. as you know, I had a long-haul journey as a carer myself but never had to cope with Covid pressures, and am extremely grateful for that.
Unpredictability is a big part of the carer’s lot (both day-to-day developments and the overall length of time involved, although there will inevitably be only one outcome). In my case, an anticipated one year or so turned into an experience that lasted a decade! But it’s good to do the right thing by loved ones who’ve done the same by you, and you won’t regret it. Your description of your mum (para. 2, very moving) reminded me of my own, who I had seen in the past look after both her own father and my dad during their respective long declines, so she had earned the same treatment herself. And got it. 🙂
Thanks, Mike – I know you’ve been through it all too, although I hadn’t realised it was a decade! There has never been any question that my sister and I wouldn’t step up to the mark and help out. As you say, they brought us up and never hesitated to help out when we were both going through traumatic divorces with young children. It really is the least we can do, although finding what works for all of us is definitely key. We’re currently trying to let out their house to raise some extra income for the care home fees, so that’s taking a lot of time and effort – but again will hopefully be worthwhile in the long run! I know Dad does appreciate what we’re doing, even if he can’t always express that 🙂
Thanks Claire…. aah, care home fees, that’s material for another blog post…. 😦
Quite astronomical! And the North-South divide definitely doesn’t help… 😳
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