My mother was first diagnosed with heart failure in 2013, with a life expectancy of one year. She defied her doctors and carried on until March this year, when she passed away from multiple organ failure. Fore-warned is not necessarily fore-armed though, and struggling with anticipatory-grief was an unexpected challenge for me in her final weeks.
When I had the call to say we had reached the final few weeks of mum’s life, I went to the work toilets and sobbed. I let out all the pain and raw grief that I could, then wiped my face, pasted on a smile, and went to spend the evening with her. I teased her, took her sushi, and watched TV as though the bottom hadn’t just been kicked out of my world.
Throughout it all, I tried to keep a smiling front and to ‘stay strong’ whilst I was around mum, before letting myself fall apart when I left each evening. It felt important to keep up the appearance that everything was ok, because even though she knew she was dying, to say the words felt like a curse - shattering the illusion of normality that we were working to cultivate.
But whilst we’ve been conditioned that ‘staying strong’ and ‘putting on a brave face’ are what has to be done, I found the mutual relief when I cracked and knelt sobbing before Mum to be cathartic in ways I hadn’t expected. As I cried she held my hand and said “Oh thank God, I thought you didn’t care!” She admitted that she found how we’d all been hiding our emotions really difficult - that whilst we tried to pretend everything was fine, it made her fear that no one cared she was dying. That ultimately, my crying and displaying that emotion gave her permission to do the same.
Trying to balance the ‘preemptive grief’ of knowing someone you love and care for is dying, with still caring for them whilst they’re alive is nigh on impossible. There is no right way to do it, no road map to follow, just as there isn’t one for grieving after the person’s death. It’s a natural part of coming to terms with the end of a loved one's life, and everyone will handle that differently.
What I found vital to my survival in that time, was reaching out to others who had also lost loved ones, to talk to them about their experiences and to feel that little bit less alone. The understanding, even when you don’t have the words to fully express the emotions you are experiencing, that you can find with others who have lived it, will be invaluable. Talking about death gave me pieces of support to cling to when it felt like life was falling apart, counting down days and morphine doses.
There were days when everything seemed normal, and we wondered whether it was a false alarm. There were days when I sat and listened to her breath rattle and wondered if this was it. In the final days she became more childlike, more demanding, and I found balancing these two sides in my head difficult. I was grieving for the mum I knew, who I had already lost, even as her physical body was still living and breathing and needing care.
Caring for someone in those final stages is always challenging, but never more so than during lockdown. You become the child, the parent, and the carer all at once. Bodily functions that used to be private are now a full production to try to manage. Boundaries are shattered, and whilst there is a desire to see to every need of the person you’re caring for, it can feel like you’re losing yourself in the process.
Looking back over those last few weeks, if I could give myself five pieces of advice, I would tell myself the following:
None of what we tell ourselves matters really does. What matters is the time you have left. Make the most of it. Allow everything else to fall away.
Ask a loved one or close friend to notify friends. If it’s possible to keep the circle of those closest to you up to date in one go, the energy you’ll save having to go over the same things repeatedly will be invaluable. My husband set up a group chat separate from me to keep our close friends up to date. It meant they were aware of what was happening without my having to say anything.
Talk to the one who is dying about it. Talking about death will not hasten it, and the relief of sharing some of those emotions will bring comfort later on.
Allow yourself the space to remember that what you’re living through is fundamentally imperfect and unfixable. Give yourself permission to know that you are doing the absolute best you can in an impossible situation.
Allow yourself to find the pieces of humour wherever you can - it’s the moments of levity that will stay with you.
Anticipatory grief is something that creeps into the cracks of the last days and weeks with a loved one. It was something I initially dismissed - how could I grieve for someone who was still here? Surely that should come after her death? But as faculties and memory diminish, you are grieving every lost possibility, a hundred futures that are cut off before they can flourish. It is another layer to caring - another obstacle in an already convoluted maze.
Being aware of it as you enter that last stage on your caring journey is all you can do. Your feelings are valid and need to be felt and heard, and whilst it may seem like the most isolating journey you can be on, there are so many others who can share that burden if you reach out.
Final word
Remember that you are not alone. Our 'How to cope when our caring role comes to an end' talks about how practical things that we may think can help us prepare for this change, sometimes do overshadow our feelings.
Feel free to also join our private online Mobilise Community for unpaid carers. It's a space where carers are welcome to ask all sorts of questions to do with caring, and we help each other out with our experiences and wisdom.