After I die

After I die, what will happen to Smiley?

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?

Here she is, in case you need an introduction 

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.  Sometimes I don't have the time either, or I'm embarrassed about making mess when we're out in public.

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.

ADDENDUM


Since I wrote this post it has been nominated in the Irish Blog Awards, so if you enjoyed it I would be very grateful if you would vote for it by clicking on this link:

http://www.blogawardsireland.com/best-blog-post-2014/

Then clicking the icon next to 'Looking for Blue Sky'

And then scrolling to the bottom of the page and clicking the 'Vote' button.


42 comments:

  1. Thank you for saying out loud... my fears are the same... x

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  2. I was only speaking with my mum recently about this. At school my best friend had a sister who was severely mentally disabled. She could walk but her behaviour was very irratic, and aggressive. She was almost non verbal. My friend was so good to her, but her older sister was very clear, she would never be her responsibility. In her late teens she got a place in special unit as here parents were unable to control her. The trauma and tears of that move! What a change it was for all.
    Her behaviour improved and the unit she was in had great nurses etc who really looked after her. Twenty years later she is still there and continues to enjoy it.
    It must indeed be a huge worry but these things have a habit of working themselves out in the long term, and thankfully you don't sound like you are going anywhere soon. Every picture of smiley I see makes me smile.

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    1. Thank you for that story, it's very comforting x

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  3. Exactly my thoughts too. And just recently Iife showed me a glimpse of something that terrfied me. I think I might blog about it too because people need to know that this is a very real fear that we all hold in our hearts. Hugs to all us scared parents.

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    1. I hope you do, and yes, hugs all around x

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  4. I know of a family which has a 20-year-old autistic daughter, who after a crisis three years ago was sent to some sort of special school for people with autism, and has been in one sort of residential care or another most of the time since. She has improved a lot since, mainly because she is now in a unit close to home and has *a lot* of support from her family (much more than from the unit itself, where the staff sectioned her and tried to move her to Northampton against her and her family's wishes, which led to a public campaign, and so far they have decided that may not be the best idea after all). However, they are looking at local, bespoke "home" placements, because the daughter is scared to go and live at home because she fears that her mother will get old and soon be unable to look after her (the mother is nearly 50) and she doesn't want to become a burden on her brother and sister. Personally, I find that worrying, because even if they find a good placement locally, a lot could change between now and when her mother becomes unable to care for her, and they could have sudden staff changes and so on, and in the meanwhile she will lose out on quality time with her family. I also suspect that the bespoke placement won't materialise and that the unit staff are leading them on (this has happened with another autistic person in another part of the country recently).

    Still, even though I believe families are the best people to care for disabled people who can't care for themselves (as usually, nobody else will love them the same and others can move on, while family never stops being family), well-run and well-inspected care homes are a necessity, because they will outlive their parents and usually won't have children of their own to look after them. And I've heard of other cases where people have thrived in residential care after living at home became impossible.

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    1. There are some wonderful care homes, so I guess all you can do is hope that your child ends up in one of them.

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  5. That is just heartbreaking. I cant even imagine how difficult and frightening that is.
    I think the fact that you know what can happen (and does happen) to some children when they are being looked after by someone who just care enough, makes it worse.
    The only thing you can do, is make sure sure you look after yourself to the best of your ability, and make sure you are around for as long as possible.
    Aud xx

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  6. Your post is one I have thought of so many times myself
    I just also wonder about one more thing - when I die will R's specialness die with me - Will people know just how amazing and magical he is? Or wil be just be one more person who needs assistance

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    1. Yes, I get that, because I have found that people don't get how special she is until they get to know her - if they see the shy withdrawn person she can be until she trusts you, then maybe they won't bother :(

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  7. Very well said. I have many of the same fears. Those positive stories of long term care give me hope, however.
    Hugs,
    Julie

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  8. I hear your fears. I think it's the biggest fear of all parents of disabled children. But maybe she will thrive on the company when the time comes. Maybe. Here's hoping for that.

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    1. If it's the right company, I think she will enjoy that aspect alright x

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  9. xxxx sending you the love xxxx

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  10. You can't be replaced - mums can't ever be replaced. When the time comes many many many years from now then i'm sure you will have put everything in place for Smiley to be properly cared for as much as is possible. xxx

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  11. I imagine that this is any mum who is a carer's worst nightmare. No wonder you are scared and have all of these worries. I am also certain however, that you will have everything in place for her to get the best care. There are wonderful people out there who see caring for others as their vocation and I'm certain you will find the best. But of course it's such a long way off, so try not to worry too much. Lots of love to you and Smiley x x

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    1. You're right, there certainly are some wonderful people out there who care for children like mine xx

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  12. Oh honey - you've expressed one of my fears so much more eloquently than I could have. Please know that you are not alone with this - and your incredible daughter looks like she'll have no trouble wrapping plenty of people around her little finger, chocolate cake and all!
    Take care, and give your Smiley a hug from my Smiler - he has a knack for getting what he wants too!
    Lucas

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    1. That's good to hear! It can only help them xx

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  13. I always want to comment on your posts, but this one has kind of left me speechless. Because all I can say is you have managed to say almost exactly what I feel about me and Boo. It's so hard.

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    1. Often the posts I enjoy the most leave me speechless too xx

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  14. As a special needs parent, this is something that we all think of and do not want to face. If you get a chance, please glance at my post on leaving a special needs legacy http://julianasjournal.com/?p=665 . It is about a special needs parent and what she did for her son. I wrote the post because it gave me hope, and helped me put so many fears behind me.

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    1. Thanks so much for reading and I will of course check out your post x

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  15. So so hard. I figure that I can deal with anything that autism throws at me but when it comes to my death and what is going to happen to my son, my heart sinks into the well of my stomach and I don't know what to do. You are right, we mums are the absolute best when it comes to our own kids.

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  16. Being almost 60 this is on the forefront of my mind all the time now! I feel the same "arrogant" way you do. No one can love and take care of Bethany the way that I do! I tell my other children that we don't expect them to have her live with them and that they should not feel guilty about that, but I secretly hope that one of them will want to take her in!

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  17. Everything that you talked about in your post is one of the many reasons I have complete trust in God for looking after my daughter. First and foremost, me and my husband pray for her healing as we know and believe God is able to do so. But we know for sure that if something ever happened to either one of us while she was still in her wheelchair God would make sure she was well cared for. It is a wonderful feeling to be able to trust in God and have perfect peace no matter what situation arises. If God cares for even the little sparrows, certainly he cares for us. (Matthew 10:31). I don't know if you are a Christian or not but I pray the Lord gives you peace.

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  18. I have just witnessed my friend going through this as she went through the final stages of cancer, leaving orphan daughters, one with DS. She was a lawyer so she made watertight legal documents about who would care for them and began to talk to them about not being there and where she would be- they are under 10.
    She made every preparation she could but you can't control anything that happens after you are gone and that is something you cannot worry about - just make sure all the practical things are organised and there is a written list of your wishes. Because none of us knows what will happen tomorrow so being prepared admin-wise is the best you can do.
    It seems morbid but it's practical to work out those things you have talked about. Then you can revisit them every year to make sure they are still in order, like your own annual review.
    You just need to concentrate on keeping yourself healthy and calm, eat well, sleep as much as you are allowed, enjoy life and the joy Smiley brings you. That's what will keep you here for her for as long as possible. Oh yes, and look both ways before you cross the road.

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    1. Reading this really brings it all home. Very good advice, but so sorry that you lost your friend, and even more sorry for her children and family. Life is so horribly unfair at times xx

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  19. She is so adorable and I think there are lots of good people out there who would love to give her the best life they can. These thoughts are a long way off for us (I hope) but I do know what you mean. You'll just have to not die, that's the best option for you :) xx

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    1. Not dying is my number one option at the moment :) xx

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  20. I worry about what will happen to my Littlie after I'm gone too, all the same fears, all the same reasons - I try to take each day as it comes, and not look too far ahead, but it's incredibly hard not too.

    I pray that, your smiley, and my Littlie, will always have, in someone, what they have now in us!

    God bless you, and your lovely family

    Kimmie x

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  21. It's like your reading my mind right.now xx
    Mandie

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