After I die

After I die, what will happen to my disabled daughter B?

B, disabiity, after i die

Yes, there are lots of people who love her and appreciate her, including her brother and sister, but who will take care of her? I don’t want her siblings to take on that responsibility, so who will make sure that she keeps smiling? Who will do all the things that I do?

Will she feel abandoned by the one person who was always there for her?

Can you explain death to someone who is severely disabled? Or will she just sink into sadness until I am completely forgotten?

What sort of life will she have? Will she be able to live with friends? Or people that she finds entertaining? Will anyone even consider that? Or will she be expected to be thankful for what she is given… After all, God forbid she should be entitled to anything. No worse insult these days it seems.

Will anyone have the patience to help her to feed herself? To clean up the mess afterwards? Or will they just feed her quickly, because they are under pressure to move on to the next person.

Will she be an embarrassment? She can be very loud, especially when she is laughing with delight. Perhaps her carers will think she is too noisy, and keep her away from other people. Take her to out of the way places where she won’t bother anyone. She’ll be quieter then too, and maybe they will think that she doesn’t enjoy outings, and stop them completely. It would be easier, after all.

Will anyone bother with her toilet training? Especially as she will always need nappies. Perhaps she should just ‘go’ in them. That would probably save time and money. Never mind her dignity and all that. Never mind her pride when she uses the toilet correctly. And then there’s health and safety. The equipment I use is old and needs replacing, but it seems that there are no companies that provide toileting equipment for floppy adults…

Will someone make sure that she is entertained: give her something to hold, something to watch. Or will she just be left to sit. Then she’ll be quiet, she’ll retreat into herself, she’ll be easy to manage.

Will she still get chocolate cake? Or will someone decide that she needs a healthy diet. Even though she adores sweet things.

Will people still talk to her, when her replies will not be in words?

Will she have loving caregivers? Or a succession of poorly paid and overworked helpers who do not have any time and energy to give to her.

Perhaps I am just being arrogant and unfair if I think that no-one else would look after her like I do – and I’m very far from perfect. I’ve seen comments like that about mothers like me. Perhaps she will adapt to whatever life throws at her, and use her winning smile to get what she needs. Perhaps I am wrong.

But you know what? I don’t want to risk being right. I’m her Mum, I don’t believe that I can be replaced. So I can’t die, I just can’t. At least not for a very long time.

(An old post updated)


16 thoughts on “After I die

  1. These things weigh heavy on my heart, I like the way you have written about them. Articles like this need to be in journals so professionals see them x

    Liked by 1 person

  2. Hi Candi,

    I read Frances Ryan’s piece in today’s Guardian (was pleasantly surprised to see it in Features today rather than relegated to Society tomorrow). I couldn’t help but notice that she interviewed three women; I have seen some ‘feminists’ run to the Tory press in this country with scare stories about trans women in ladies’ loos and changing rooms and peddling the myth that it is Jeremy Corbyn’s policy rather than a more widespread trend that pre-dates his leadership. We badly need these Tories gone for the sake of people like Lucy and others (her impairment and a very large number of other chronic illnesses predominantly affect women, and affect them worse than men) — the damage they are doing to the health and social care sector is appalling, to say nothing of libraries and other public services. I really hope some of them read this and stop their silly games.

    Liked by 1 person

  3. Such difficult questions to ask yourself, especially when you won’t ever really know the answers 😦 All you can do is your best at preparing others, just as you’ve done your best for her so far up to now. Maybe a little booklet with all these characteristics of hers in could be something to aim for (you know, in all those free hours a day you get to yourself 😉 )

    Liked by 1 person

    1. There is a gorgeous booklet already prepared about her, by her school. The problem is that care workers don’t always follow the guidelines. The worst was respite: I sent in a clear simple one pager with the key information about B, and she came home so distressed that I can only assume the staff (who were mostly agency) completely ignored it 😦


  4. So beautifully written and heartbreaking too. I can empathise to a degree because I know no-one, no matter how good they are, will or can care for my parents like I do. That same bond of love isn’t there. Who could notice the little subtle changes that we can, that highlight something is wrong? For parents like you though the worry must weigh heavy on your heart and mind x

    Liked by 1 person

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