It’s another exploration of the momentous year in which I got my autism diagnosis and my mother died. It covers both themes, because in real life things never happen in isolation. I hope you like it.
Trigger warning. Obviously.
How to watch your mother die
My mother died last year. Or it might have been the year before. I don’t remember. That’s the problem with living in a pandemic. You lose sight of what month or year it is, and it’s hard to know where you are. I like to know where I am, for reasons I’ll come to later.
Anyway, it can’t have been last year. I know it was before lockdown, because I spent a lot of time on the motorway. And I know it was before Brexit, because I spent a lot of time on the motorway. Mum lived in Kent.
When I’m not making bad jokes, I have bad dreams.
This much is what I remember: the day I got back from my father-in-law’s funeral, I found out that my mother might have cancer. I’d expected my father-in-law’s death. I’d expected my mother to live for ever.
Afterwards, I wished I’d known then what I know now. This is what I would have told myself.
Grief happens before death.
You might not cry, or not much. It will be worse than that.
You will feel dreadful while your mother has tests, and waits for the results. You will have a sinking feeling in your stomach that won’t go away. You will tell yourself all kinds of sensible things, but you will realise that there is something primal going on that is beyond reason. The deep-down need for a mother, always.
When you find out it is worse than you expected, you won’t know what to say except: fuck.
The other word you will use is “stunned”. There aren’t any other words.
The next day you will try to phone your mother and will keep getting the engaged signal. Your sister will text you: “Mum is in organising mode.” You will be, too. You won’t lie awake grieving, you will like awake worrying about the funeral, and when to clear the loft.
You will try to read some useful websites, but your brain will seize up and you will have to have a nap (you will be glad you work at home). Your body will do weird things. Making you very hungry. Making you very tired. Making you feel faint. It will think there has been a trauma. Because there has.
Over the next few days, you will think of another word: “devastated”. You will learn a new word: dissociation. It’s what it’s called when you feel like you’re not really there. You will learn that it’s an anxiety symptom and a defence mechanism. Don’t worry about it. It’s normal.
Not everyone loves information.
It will happen the year you find out you’re autistic. Autism has been your “special interest” (that’s a thing that autistic people have) ever since you started to suspect it meant you. You’ve searched the library catalogue for “autism”, ordered a lot of books, and made notes. You’ve talked to people on Twitter who are #ActuallyAutistic and they have welcomed you into their tribe. You’ve learnt a lot of useful facts about masking, sensory overload and depression.
You will learn that you don’t deal with information in the same way as your siblings. You are logical, and you don’t mind talking about death. You describe things as you see them. You deal with facts, and you don’t see why planning a funeral in advance would be upsetting. You believe what people tell you, and don’t recognise what is between the lines. You will realise there is a reason that you’ve always felt like an outsider in your own family.
Knowing you’re autistic will change the way you look at yourself, and the way you look at your family, and your understanding of how they all communicate (or not). You will need this information later. You won’t remember all of it in time.
You will realise that you’re not very good at recognising emotions: you feel them, but you can’t describe them. You will find out there is a name for this: alexithymia. You will realise that your mother is like this too. You will start to forgive her for all the times she failed to show empathy, because she didn’t understand what you were feeling.
Some things you won’t have learnt yet. That you don’t recognise when you need to change your plans. That you feel uncomfortable when people break rules, even ones they don’t know about. Why noise hurts you. That it hurts when you make mistakes.
You will say the wrong thing without realising. After struggling with your father-in-law’s sketchy eulogy, you will email your mother and suggest you sit down together some time and talk through her life story. “Just thinking ahead,” you will say. You will know she won’t mind, because she started a box file called “Death” the year she turned 80; you both like being organised. A week later you will find out she is getting tested for cancer.
You will learn that you need to know where you are with things. You will discover that it isn’t possible, because things keep changing.
You will get a new “special interest”. You will order books and leaflets from Macmillan and Marie Curie and Pancreatic Cancer UK. When you read them you will find out what T4N1M1 means. It’s as bad as it can get.
You will buy a book called Dealing with Death, Funerals, Wills and Bereavement and you will bookmark lots of pages. You will spend the evenings, while your mother sleeps, reading the Death and Bereavement section of the gov.uk website, and practising filling in probate forms. You will get a book out of the library called With The End In Mind by a palliative care doctor called Kathryn Mannix. It will be full of true stories about death, and it will make it less scary.
You will read the information pack that the consultant gave your mother. She won’t. She will say: “It’s all about pancreatic cancer, I don’t need to read it.” You will ask if she has read the booklet called “How are you feeling?” She will say she doesn’t need it, because her feelings are fine.
Notice the signs.
In the spring before it happens, you will visit your mother for her 84th birthday. You will take her for a meal at the local gastro-pub, as you’ve been doing for the last three years. She prefers visits to presents, and she likes good food. She’s the sort of person who on an afternoon out always looks for the tea-room.
You will say you’ve been thinking a lot about mortality since your last birthday. She will say it isn’t something she thinks about: “There’s no point.”
She will also tell you about the state of her joints (not good, but she won’t complain), and she will add proudly: “My doctor says I am organically fine.”
Later, you will wish you had asked whether this was based this on any actual evidence. You will also remember that your mother’s stomach was changing shape and you didn’t take any notice because you were used to her being fat. You will remember, too, that she didn’t seem to enjoy her special lunch as much as usual.
In the summer, your mother will send you and your two sisters a chirpy email: “I'm having some tests at the moment. Hard to believe but for about a month I've been eating less.” You will only worry a little, because she hasn’t said anything about being worried.
She will keep downplaying things, and you will take this at face value. One day she will say “I’m losing weight but I don’t know where from, because it’s not from round my middle.” Later, you will wish you had listened to the alarm bells, and told her to call the doctor. You will know it wouldn’t have made any difference to the outcome. But it might have made a difference to you: you could have had more time to say goodbye.
A few months later, the palliative care nurse will tell you what to look out for, so that you don’t leave it too late to go to the hospice. One of the signs is that the person will stop being able to swallow.
A few weeks after that, you will visit your mother in the hospice. She will be sleepy and it will hard to hear what she’s trying to say to you. “Is it because you haven’t got your teeth in?” you will ask. “No,” she will say, “It’s because I can’t swallow.”
You will spend the morning with her and then leave, because she keeps falling asleep and because you had the day planned out. In the afternoon, your youngest sister will stay at the hospice. Your mother will keep saying: “I’m glad you’re here.” She will know what you didn’t remember: it is nearly the end. You will wish you had stayed.
You will comfort yourself with the special things that happened that morning. The serendipity of the Salvation Army band’s monthly visit, and their offer to play a request. The smile on your mother’s face when she hears them play her tune. The knowledge that “I love you” was the last thing you said to your mother, and it was the last thing she said to you.
One day will not be like the next.
Don’t assume that today will be like yesterday. Don’t make plans. Be open to change.
You will go to visit your mother as soon as you get the news, and it will be weird how normal everything feels. The house will be the same as always: the one you grew up in, but grannified beyond recognition in the decades since your father died. You still think of it as a new-build, because it’s the same age as you, and you’ll be surprised in a few months’ time to hear an estate agent use the phrase “an older property”.
Your mother will be just the same as she always is. She will wind you up like she always does, because she is bossy and because she hides her feelings, and that doesn’t change (you will remind yourself) just because someone is ill.
Except it does. Over the next weeks, you will notice your mother changing, and the things that you always found difficult will drop away. You can’t be a control freak when you are dying, and you have to be honest about your emotions because otherwise it will be too late.
Your mother will suggest a weekend away at a hotel. You and your sisters will call this “Mum’s last fling”, and act as if you are having fun. The time will pass quickly in quizzes and spa treatments, and meals that your mother can’t eat. Someone will say: “We keep running out of time.”
You will try to learn to push a wheelchair. Your sister will order a walker and baby monitors. You will realise that you’ve suddenly started a new phase: you are all going to be carers. You won’t like the idea.
You will drive your mother home, and after you get there you will post on Twitter: “Finding out what it’s like being a carer. I’m knackered from fetching and carrying, and mum’s full of beans cos she’s just had her morphine.” Over the next few weeks, being on Twitter will help. Your invisible friends will understand.
You will learn how to help your mother dress, and what goes on her breakfast tray: glass of water, food supplement drink, morphine. You will notice the tray has poppies on.
Your mother will carry on with her usual social activities for a few days, and then stop. You will learn the signs that show she is in pain. She will only say she is “uncomfortable”. You will work out a rota with your sisters for staying with your mother. You will have WhatsApp conversations about opiates, vomiting and poo. Then one day the palliative care nurse will say that there are two weeks left, and after that everything will change again. You will all stay there, until the end.
All the time your mother is at home, you and your sisters will look for clues. You will go over the earmarked pages in the cancer booklets. You will look for signs of swollen legs (“fluid”), or twitchy hands (“terminal restlessness”). But in the end – at the end – you won’t need any clues, because it will be obvious when it’s time to go to the hospice. Your mother will be weak, and will want to feel safe. You will feel unsettled because someone else is looking after her, and you will feel in limbo because she seems stable. You will be afraid they will send her home if she doesn’t die quickly enough.
Some days will be very intense. You will treasure the memory of your mother’s eyes lighting up when she sees you come in. The times when the family are together, playing games and talking. And how proud you feel of the way she responds to the people around her. Everyone says what a lovely woman your mother is. You will finally start to believe them.
Then suddenly things will get flat. One day, your mother will look bored and will send you away. You will say to yourself: maybe she is going to die of boredom. You will forget that one of the signs was being detached from other people.
The next day, your mother will look as if she’s fading away, and it will feel like another new step. The day after that, she will happily sit and do a crossword with you, and your husband (who you’ve begged to come) will be surprised by how well she looks.
Then the next day, she won’t want to get dressed, and she’ll keep falling asleep, and she won’t be able to swallow, and you won’t realise why.
For the next two days, she will be actively dying. You’ll all be there, but she won’t know it. You will hear a nurse say “It won't be long, my darling", and it will sound like a blessing.
Things don’t work out the way you might like.
There might not be a happy ending. There may be conflict. This is normal.
In the final weeks, you and your sisters will all stay in the family home with your mother. Your sisters will do the personal care, because they’ve had children and you haven’t. In return, you will promise to organise the funeral, because you’re good at organising. You will be in charge of lists, and cooking. Lists will make you feel safe, and cooking will make you feel nurturing. You will realise you are taking on your mother’s role.
The grandchildren will come, a day at a time, to say goodbye. It will be heartbreaking to watch. You will say to your mother: “I’m not going to say goodbye.”
Your mother will start to say “I love you” every night, just in case. You will learn to do spontaneous hugs, and tell her how brave she is.
It will feel good being in this family bubble. Your mother will say that it is a joy having you here, and how pleased she is that you are all getting on together. You will tell yourself that you will treasure the memory of these weeks.
At the end, there will be misunderstandings and anger. You will realise later that you made a mistake asking your husband to join you, because you didn’t read between the lines of what people were telling you. You will think that your sisters made a mistake too, because they expected you to hear the things they didn’t say.
You will know that deathbed anger is common, because you’ve read about it, but it will still make you feel bad. You will feel sad, too, because the togetherness that made your mother happy is broken. You will feel an outsider again. You will miss seeing your mother’s final breath.
Hospices are not as peaceful as you expect.
The hospice will be small and friendly, but more like a hospital than you expected. Your mother will be in a room with four beds. They will be in “bays”, which means they have curtains, but the curtains won’t be drawn even though someone is dying in the bed opposite.
You will learn to recognise this process later, but this time all you can see is a bald, skeletal, unconscious woman who is lying with her mouth open while people play music on their phones. Breaking the rules, because there is a notice on the wall saying that phones should be on silent. Later, you will notice people say “Hearing is the last thing to go.” They will say this a lot. Then you will remember, and understand.
But on this first day, you will be overwhelmed by what’s around you. You won’t know where to go that’s quiet, so you will sit in reception and cry properly for the first time. Someone will come over and ask if you’re OK and you will say you’re autistic and can’t cope with the environment. They will fetch the family support social worker, who will take you to the Quiet Room. She will say she understands, because she has worked with autistic children, and that “the universe” made sure she was on duty today. When you go back you will find that they have moved your mother’s bed so she is by the window. But it will still look like a hospital.
You will spend the next day in the house while your sisters are at the hospice, because you will need time on your own to process this latest change. You didn’t believe, before, that you were actually going to lose your mother, and now you can’t stop crying.
After that you will get used to the new routine. Sign in, take a visitor’s badge, sit next to your mother’s bed, and wait for what will happen.
Your mother’s day will be interrupted by people coming to do things. People in green uniforms and people in blue uniforms, and people with badges and no uniforms which means they are either a doctor or a volunteer. They will ask whether she wants food, or painkillers, or a massage or a haircut. Some people will ask her to get out of bed and do exercises. She will reply politely that there’s no point because she is terminally ill.
People will come and go in the other three beds. Some will die, and a candle will be lit at the nurses’ station in the corridor. Some will be sent to nursing homes. In the second week, a new person will arrive who has her television on all the time, with the volume turned up. You will spend a lot of time in the Quiet Room.
Don’t believe what people say about how long you’ve got.
The consultant will say “months rather than weeks”. He will be right, but it will only be two months. The palliative care nurse will say “two weeks”. It will be three.
The doctor at the hospice will say you are in “the last few days”. It will be the last week. The nurse will say “It could be today.” It will be two days.
Your sister will say: “Come now if you want to see her alive.” It will be 12 hours.
Faith helps. It doesn’t have to be your own.
At the hospice, your mother’s bed will be wheeled into the chapel for the weekly communion service. It will feel very holy. The vicar will say that the hospice is a “thin place”, and you will believe her. After the service, the vicar will ask your mother what her favourite hymn is. She will reply: “The one I’m having at my funeral, There is a Redeemer.” The vicar will ask the pianist to play it and you will sing it together. Your mother will look very happy. You will feel proud of her.
When she dies, she will still be holding the small wooden cross that her friend gave her. You will tell the undertakers she must continue holding it.
It’s not over when it’s over.
Death is not sad, but it is hard. Loss is sad. It will take time to know how sad.
Don’t expect things to go back to normal. Expect to be tired. Very tired.
The day after your mother dies, you will put on a mask and make phone calls. After that you will start filling in forms. You will be glad you are organised and logical, because someone has to be.
You will go home for the first time in weeks, and it won’t feel like home. You will miss your mother, because you will want to tell her about the changes in your garden while you've been away, and about all the nice things people are saying about her.
You will cry in the funeral service, but not before and not for a long time afterwards, because you will be too busy to grieve. You will do all the things that need doing, and afterwards you will remember only the things you wish you hadn’t done.
You will think about the plans you should have changed, the mistakes you made, the signs you didn’t notice. You will be haunted by the things in your mother’s house that you didn’t keep, because you ran out of space and time.
You might have done things differently if you’d known. You will tell yourself that’s true of death, but it’s true of life as well.
Regret is part of grieving. You will know this because you’ve read the books. You will read more books.
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