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)

 

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The fun begins… At least for us

The crisis cauldron boiled over on Friday and put the fires out, at least for now. So life has been a bit calmer here, which is a reason to be cheerful in itself, but there’s more. Last Saturday was St Patrick’s Day, as I’m sure you knew! But the significance for us is it means waving goodbye to hanging out in warm, dry snow free shopping centres, and hello to lots of festivals and other entertaining events that will pack out every weekend from now until November.

Of course we were promised the son of beast, and the weekend was indeed cold, and snow arrived on Sunday, putting a chilly damper on our plans.

But Saturday went well. Really well. My new secret parking place in Swords remained undiscovered, and we only had a ten minute walk to the meeting point for people taking part in the parade. This year, we were offered the chance to ride on the little train with the children from the Snowflakes Autism Support Group, and to my surprise there was a compartment at the rear of the train with a ramp for wheelchairs.

So B rode the train past cheering crowds doing her best princess impression, and enjoying every minute.

Princess B, St Patrick's Day, Swords Parade

And I thought how lucky and blessed we both are.

I was reminded of that thought on Wednesday at a focus group I attended about community living for people with severe/profound disabilities and complex medical needs (a horrible mouthful, I know).

I’ve often wondered, silently and out loud, why I never see other people like my daughter in public. I’m beginning to get some answers.

One reason is scarcity: there’s probably no more than a few thousand people in the whole country with a similar level of disability.

Then there’s the problem of incontinence and the lack of changing places toilets, that I *may* have mentioned before. For us that means we only leave the house for 3-4 hours at a time. For others, it means they barely leave the house at all.

Food can be a problem too: some people need a mashed or liquidised diet, which can be difficult to find (I have resorted to mashing up McDonalds chips in emergencies!), others are tube fed or peg fed, not very compatible with leaving the house.

Children and adults with complex medical problems such as intractable epilepsy may be at risk without their medication or specialised equipment, and may rarely venture far from home, school or day service.

Others display behaviour that doesn’t conform to social norms, which may mean they are not happy out, and are happier staying at home.

Sadly, the conclusion of the focus group was that community-based living may never be a practical option for some disabled adults, due to the huge costs involved of making everywhere suitable for everyone, the huge education requirement that everyone has a basic understanding and acceptance of every disability, and the dangers posed to those whose health is fragile.

So I counted my blessings once again, that my disabled daughter can enjoy life in the community. And it means I can too.

R2BC at Mummy from the Heart

 

The Dentist

Not everything happens when it should, especially with the seismic shift to adulthood when you have a daughter with severe disabilities. So much change is happening so fast that some things just slip off the calendar, and you barely notice.

And so it was that B did not go to the dentist for 3 years. In my defence, I used to get a text reminder every year from the local health clinic to make an appointment, and that stopped without warning on her 18th birthday.

My recommendation: send out a letter explaining this, and advising what to do next.

Since I didn’t know what to do next, I consulted Facebook – as you do – but wasn’t particularly happy with the replies, and so the issue of a new dentist for B got put on the long finger. For a long time.

But New Year Resolutions and all that meant I decided to tackle the family health checks. And I remembered bringing B to another health clinic one time for an emergency appointment to get her teeth checked when she was very upset for no apparent reason – and of course she can’t tell me why.

I rang them, and explained the situation.

“No problem,” I was told.

It wasn’t urgent, so I was happy to get an appointment in March at a time that suited – just after B finishes her day programme of activities and before the rush hour begins 😀

She was noisily delighted to see me, no phobia of dentists for my happy daughter!

After a 10 minute mobile disco dancing session in the car (as you do), we drew up outside the clinic, currently in a run down sprawling old building, but not for long, as there is a shiny new replacement about to open next door. But for me it’s not about looks. It’s about accessibility, and how much stress is involved in the appointment.

On those criterion, this clinic scored top marks:

We arrived early, there was free parking, including disabled parking.
It’s wheelchair accessible.
The atmosphere was calm, and there were some free seats.
Reasonably clear instructions for new or occasional visitors.
A very short wait! Which is always good.
A lovely dentist and dental nurse.

I’m in awe of dentists who check my daughter’s teeth, as she normally bites down hard on anything you put in her mouth, including fingers. Yet somehow these trained professionals are able to check her teeth without complaint or upsetting her. I don’t think she actually enjoyed the experience. But she certainly cooperated.

Best of all, her teeth and gums are healthy. Despite her love of cake and chocolate, it seems she needs no dental work at all.

I don’t feel quite such a neglectful mother now!

R2BC at Mummy from the Heart

Yesterday

All my troubles…
…Seemed a bit more manageable.

Yesterday was a good day for me, with several reasons to be cheerful:

Baking

A request was made for a homemade chocolate cake, and it was agreed that my reliable 5 minute recipe would do. The result? Three happy young adults, and a bit of stress free baking therapy for me.

Running

Entries opened for the Dublin Women’s 10 kilometre Mini Marathon yesterday, and I got my place, and it’s in the runner’s section at the front –  I earned an automatic qualification thanks to last year’s time. So no pressure, and I now have something to look forward to, as last year’s Mini Marathon was definitely one of the best days of 2017 for me. There’s something very special about being part of such a massive event that involves running around the streets of Dublin with 40,000 other women.

The start line, Dublin Womens Mini Marathon 2017
The start of the 2017 Mini Marathon

Parading

Due to the family crisis, I forgot all about St Patrick’s Day and the need to organise something fun for B to do, but yesterday the lovely people in Snowflakes Autism Support once again invited her (and me) to march with them in a local parade. You might remember these photos that show just how much she loves St Patrick’s Day, and taking part seems to be even better than watching…

Disability Rights

Yesterday was an historic day for the disability community in Ireland. After TEN LONG YEARS Dáil Éireann (the Irish Parliament) finally voted to ratify the UN Convention on the Rights of People with Disabilities. Every other EU country has already done this, and I am one of many people who protested with weary regularity to make this happen. I won’t be stopping now either, as this is just the start, next we have to ensure that the Government acts on the convention, and actually improves the lives of disabled people in Ireland. But it was a good start.

So yesterday showed what even one good day can do for my mood: 24 hours later and I can still feel the positive effects. You could call it a highover perhaps… Let’s hope it’s the first of many 😀

Written yesterday…Finished today…

R2BC at Mummy from the Heart

 

Snow days

I don’t remember snow like this since 2010. And it wasn’t like this. Because didn’t life continued more or less as normal? No red alerts, no nasty beasties or curfews involved, no bread shortages either! At the risk of becoming one of those older people who says when I was young, when I was young we all tried to get to work or school unless we were completely snowed in: as a child who lived a 7 minute walk from school, I don’t recall ever having a day off due to snow. Apparently we are due an actual blizzard later today, and that is something to take seriously. But for now, the media messages look like overkill. Especially to those of us who are bemused that an inch or two of snow is causing more of a crisis here, than several feet would in other countries.

Yesterday the overnight snow began melting early in the morning so B and I decided to test the principle that there’s no such thing as bad weather, just inappropriate clothing. The ski jackets purchased from Lidl during the last big freeze, the waterproof shoes I invested in before Christmas, and B’s super warm, super dry GaryB blanket were all put on, and we headed out to potter around the local area and forage for milk.

B, Smiley, GaryB Blanket, snow, #sneachta, #TheBeastFromTheEast

At lunchtime the sun came out.

Sunshine, #theBeastfromtheeast

So I decided to bring B to a local shopping centre, for a wander. The media messages meant the roads were empty (hooray)…

Adverse weather conditions?

But they also meant many of the shops were closed due to ‘adverse weather conditions’.

CLosed shops

Luckily some were open, and they kept us entertained for an hour or so, plus we enjoyed a welcome coffee and cake at Costa.

It was a good day. A good snow day. Hopefully today will be the same.

R2BC at Mummy from the Heart