The long goodbye - caring for carers
Supporting those who are caring for the terminally ill and after loss
Grief is complex and exhausting. Anyone who has lost someone will know this. Anticipatory grief, the low level grief that any carer understands is equally draining and disorientating.
Across the western world, we find it hard to talk with someone who has lost someone or who is caring for someone who has a terminal diagnosis. It somehow makes us uncomfortable so we avoid it. We shy away from the topic because we don’t have the language to hold them, rituals have been forgotten, community dissolved. When people need us most we find it hard to show up.
The long goodbye is a phrase often used by those caring for those with dementia. I felt it equally applies to those who have a terminal illness. The unclear timeline of how long you will have this person for. You never know if this day will be the last of many goodbyes.
Unplugging from the matrix
Since 2020 I have, as a friend called it “unplugged from the matrix.” The matrix being life as it was. I disappeared. I became a carer for my mum. At first simply through lockdown as many of us did but then my mum (whilst in semi-lockdown who had been in remission for seven years) discovered a new tumour.
After successful surgery she then faced dysphasia, cruel and challenging, her life changed and she forged on. We adapted and made it work. When we went out for coffee I simply ordered two and drank both. She still managed the foam, smeared in chocolate but that was it. Small pleasures.
Just as we thought we had a level of normality, life changed again with another cancer, only this time there was no cure.
There is a deep sense of powerlessness when you watch a loved one struggle and suffer. Mum and I learned to live more slowly, to create memories and whilst her health allowed we had as much fun as possible. Laughter is important as are tears. I have shed many rivers worth.
Mum died in March 2023 and it has taken until now to be able to write about it. A mixture of grief, menopause and burnout. My go bag of self care rituals and how I managed to not completely lose my sh*t a focus of a different post. Of the support I sought and found after she passed. How I am putting myself back together. You could think of this post as part of my healing process.
My only focus for this first year is to get through it.
It may seem an odd thing to post about on this platform but I cannot be the only person who finds themself in this position, pausing their life/career or trying to juggle responsibilities to care for a parent whilst keeping the lights on. In fact, I know I am not given there are around 8.8 million unpaid carers in the UK (according to carers UK).
I could bang on about inequality, the demise of the NHS, postcode lotteries and the lonely life of being a carer whilst trying to keep some semblance of your own identity but I wont. That is not what this post is for.
This post is my way of acknowledging these past years and to share what I would have found helpful as a solo carer, what words would have been nice to hear and also what is not remotely helpful. I’ve added a few suggestions around the workplace as how people manage to return to work after a few days I will never know and have huge appreciation for their capacity.
I felt very alone and isolated with my community spread around the world and most people having returned to normal life (post covid). I also feel very grateful for the support I did receive from friends, friends of my mum and some outstanding individuals in the healthcare system.
So, as we start this year, ponder if there are friends, family, relatives, colleagues that you know are in this position and pause for a moment to consider if you would like to show up differently for and with them.
What follows is a high level guide which I am sure has been written about before by others but is really a personal reflection of what I wish I had known and often wished I had asked for.
Suggestions of things you can do to help (this is not exhaustive but you get the gist)
Many of us have said (me included) - “let me know if you need anything”, unaware that it is simply too vague to really be helpful and most often the carer or person grieving won’t ask for anything as they don’t want to be a bother. This is also a very typical British thing.
Carers and those who are grieving often don’t know what they need so simply doing something can help to lighten the load.
Here are a few suggestions:
Keep in touch - caring and grieving is long term, drop a message, leave a voice note, record a video to say hello and help them know they are not forgotten
Simply be present with the person and sit with them without expectation, there is nothing for you to fix but company is wonderful
Send a care package to them (or drop one off) with some of their favourite items, tea, coffee, chocolate, warm socks, candle etc
Offer a hug (if you know they are a hugger)
Walk their dog, look after the cat and/or their kids so they can have a break
Sit with the person they are caring for so they can have a nap or get some air
Offer to bring them food or simply take around some food and drop it off and don’t expect to stay if they don’t feel like chatting (be aware of dietary preferences and food allergies, says the walking food allergy (me))
Go on a walk with them (be prepared that it may be in silence but your presence will be so meaningful)
Make them a cup of tea
Send funny instagram reels or jokes. Cute animals are always a good bet
Offer to help clean and/or dispose of stuff that is being cleared out
You can also offer to do things for the person or simply pop over and do them anyway. It will depend on your relationship with them. Carers often don’t want to impose so turning up and making a cup of tea is pretty much always well received.
Workplace considerations for carers and those who are grieving.
The reality is that the world carries on but for the carer or grieving person, everything has changed. I work for myself which has been helpful in that there has been less pressure to be ok but also comes with financial pressures.
These are some thoughts after speaking with friends who have been carers as to what would have been helpful for them.
Review your policies with human resources to consider having a specific grief and/or carer policy which allows for mental health support, additional time off and a gradual return to work
Avoid over scheduling the person when they return to work, let them set their own rhythm for the first few months (yes months)
Consider a gradual return to work and give them permission to tell you if they feel they have returned too soon
Know that overwhelm is common as the person gets used to life after loss or as a carer, talk to the person and work out how to communicate with colleagues to establish a baseline of understanding
Check in with them regularly as caring/grief is not linear and whilst the return to work may be beneficial week to week can change so ongoing support and kindness is essential as it is easy to forget the loss they have experienced
Give a grieving person a pass
When someone is caring or grieving their ability to regulate their emotions will be diminished whether they realise it or not.
They may not want to talk (I didn’t), they may be short (I was), they may even be rude (hopefully I wasn’t).
It is not personal.
They are simply struggling. Don’t take anything personally, give the grieving person a huge dose of compassion and a pass as they figure out their equilibrium.
Words that are helpful if the person is grieving
Simply acknowledge their loss.
I’m so sorry for your loss (insert name of person) . It’s important to acknowledge who the person was.
I’m here if you would like to talk about them or anything (it is lovely to be able to talk about the person you have lost)
I’m thinking of you
I know how much you loved your mum, dad, cousin …
Avoid everything that starts with at least…really unhelpful
At least they had a long life
At least she isn’t suffering anymore
At least you had time to make memories
At least you got this time together
Also avoid everything happens for a reason - really really not helpful
I hope that this is helpful.
It’s a guide, things I wish I had known before I became a carer as I would have been a better friend. I simply under appreciated the need to be specific about help and also to not take silence from another person to do nothing and assume they are ok.
I did the best job I could but grief has changed me as has being a carer. I see the world differently and by sharing this I hope that you will either find comfort to know you are not alone or perhaps find something helpful.
There are many great resources and books available. Books are my go to and how I stayed sane, learning from others. I will share a list as there are a lot. A favourite is Francis Weller’s Wild Edge of Sorrow which I read before and after I lost my mum and it took different things from it on both occasions. A truly comforting work and one that helped me make sense of something that is hard to make sense of.
My mum had cancer and I would not have gotten through these past years without the wonderful support of Maggie’sCancer Centre in Edinburgh. If you find yourself caring for someone with cancer I would recommend reaching out to Maggie’s to see how they can support you, your family and everyone impacted.
In Closing
I miss mum every day and I am grateful that we were able to make some wonderful memories together and it was also one of the most painful periods of my life. The two are not mutually exclusive, we live in dualities.
This photo is from December 2021 where at Christmas we did a Photo Booth. We both dressed up multiple times in our favourite clothes and got ridiculous. We played our favourite music, had a shimmy and laughed a lot. We thought it would be her last Christmas, thankfully she had one more but would not have been able to do this.
Truly live in the moment. This is how I remember her. Cheeky and mischievous and always up for anything. And yes her hair was red and no it wasn't dyed! She always got asked that.