Category: Disability

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Music To Improve Dementia Care

My regular readers tend to know my mum has advanced dementia and also lives with us.  We’re always looking for ways to include her, and at the moment, it tends to work around her need to see children playing.  In a care home, that just wouldn’t happen, so she is best cared for by us, with council carers who come in and help, and some hours we pay for ourselves.  Although my mum does like the radio on, she’s very far gone with her dementia, and struggles to find meaning in music now, other than the simple instant company it gives her if she’s alone in her room while we are doing other things around the house.

Music as Therapy International has launched its #MusicCan campaign promoting the power of music in light of a report published 18 January 2018 by the ILC highlighting the essential role music has to play in the care of people living with dementia.  

Watch the video to see what a difference it can make.

 

 

Music as Therapy International have launched a campaign that highlights how music can help improve dementia care, by celebrating the ways music can improve lives and change the approaches to those in care.   They believe in the power of music to make the most of people’s potential, and helping to overcome issues like disability and trauma, as well as mental illness.

The UK charity has launched a #MusicCan campaign to highlight the ways music can help everyone.

The Alzheimer’s Society reports there are around 850,000 people living with dementia in the UK, with higher health and social costs than cancer, stroke and chronic heart disease combined.  That’s a powerful sentence when we consider that dementia is often such an isolating disease.

A report Utley Foundation sponsored report has been launched following a Commission on Dementia and Music by the International Longevity Centre UK (ILC), which recognises the wealth of evidence supporting the use of music to improve lives of people living with dementia.

My father lives in a care home, without much in the way of support via music.  Actually, there seems to be little interaction with him as a resident, but he does spend much of his day with the radio on, which helps him as a dementia sufferer, but without conscious management of music as a supporting therapy.   Music is such a big part of lives of most of us these days, and it makes sense for it to be brought under an official banner of treatments and therapies to help those with dementia cope with daily life.

As families and friends, exploring the potential of music to help those who need support can only be a positive thing.  With my mum, it’s a soothing, comforting thing, rather than therapy, but any way to keep reaching out to those who seem isolated is worth trying.

Personally, I think music should be an option for all dementia sufferers.  Granted, there will be some who cannot abide the noise, but as an option, it shouldn’t be discounted.  As carers, if we can show the benefits and improvements to the lives of dementia sufferers with music in their lives, and we talk about it, perhaps we can persuade those who hold the budget strings to make music a more tailored option.  I’ve often witnessed the groups singing hymns, or some man bashing out old war tunes on a past it’s best piano, but I think I need to quote my own mum on this, not long after her dementia diagnosis, when she attended a day centre.

Why do they think everyone over 50 wants to sit around singing hymns all day.  If I want to sing hymns, I’ll go to church on a Sunday.’

The problem is, that when music is considered, I’ve found it as a one fits all attempt.  That rarely works.  Dementia sufferers, like all of us, have different tastes in music.  We shouldn’t think that because they refuse to join a group singing hymns, that they’re not interested in music.

I don’t find music therapy to be a much discussed option for those with dementia.  As with other potential aides, there is usually a limit on costs that can be spent to support our loved ones.  We are often powerless to help with things like physiotherapy, but music is something all of us can take on board as an action.

Anything that can help improve the quality of life of anyone suffering from any health condition is worth a try.  If you are struggling to help someone with anxiety, disability, depression, or any number of other conditions, give it some thought, and see if you can bring some tunes into their lives.  The music should be tailored to what individual people want and need, and actually enjoy.

Find out more at Music as Therapy International 

More about Dementia at Dementia Caregivers

 

 

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Where I’ve Been – Hospital and Dementia

Apologies to everyone who expects regular posts from me.  It’s been a bit of a whirlwind week or two, starting with my mother falling and breaking her hip.  As a hospital patient, she hasn’t had the best time, and I find how they’re treated quite cruel, but I’m just the person who looks after her 24/7, and I suspect they think I’m being a bit of a pest now, but I can’t just watch her so miserable.

She coped with the wait to go to hospital pretty well, and the operation also went well, with her smiling broadly at the offer of a piece of chocolate once she was out of recovery.  It went downhill from there.

Her blood sugar began to rise and rise.  They use finger prickers for great big burly blokes with calloused hands on everyone, and all her fingers are black and blue.  They even used her index fingers, which is a big no no, as they are so sensitive.  My brother fell out with them one day, and the next day, they transferred her to the rehabilitation ward.  That went as badly as everything else was going.  She was hallucinating, delirious, hadn’t eaten for nearly 4 days, and had no clue what was going on.  The dementia along with the operation knocked her for six.

She was dropped off in the rehab ward in the afternoon, and when I got there at 7pm, there she was, miserable, hallucinagenic, in a chair that there is no way to rest her head on.  Absolutely shit done. Apologies for swearing, but hospital have given me a lot of reasons to swear this last week.  I cleared her suitcase from the bed, where it was still sitting from when she’d arrived.  She hadn’t been helped to eat, despite not being able to see at that point, as well as hallucinating, and nobody noticed.

This was her a few years ago.  She’s a shadow of her former self now, having lost a lot of weight in the last week.

My brother was called up for her not having any clothes, but because she was in that chair, I’d popped her clothes into a drawer, as she was blocking the wardrobe, just to clear space so she could lie down for a while.  They didn’t bother to check there.  Then they popped her on a toilet and left her alone for 20 minutes, while he paced outside the ward and they eventually went back.  If he hadn’t been there checking his watch, I suspect she’d have been there for longer.

I thought that once we’d pointed out she couldn’t see, that she’d have an easier time.  I was kidding myself.  Daily, she’s been plonked in that cruel chair, made to sit there for hours, bolt upright, with nothing to do, and by the time they try and do physiotherapy with her, she’s exhausted and in no way able to cope..  Every time I go in, she’s done.  Heavy eyes, miserable, exhausted, ill, vomiting and more, yet there she is, sitting miserably in that chair, not understanding why she’s there, or why everyone is being so horrible to her and making her sit upright for so many hours at a time.

We had to go in twice a day to make sure she had something to eat and drink.  By day 5, she became very aggressive, and despite me telling them there was something wrong with her blood sugar, it took a week for them to realise she’d been on the wrong insulin since she came in.  Misprescribed.

It took another day for them to watch her try to eat, which isn’t easy when you suddenly can’t see, and they finally agreed to feed her.   She’d kept knocking over all her water and food you see, and probably was annoying when she did that, but she was having to feel for things, and the dementia meant she couldn’t tell them what was wrong.  She’ll never be able to tell them what’s wrong.

Today, I went in to help with physio, and I felt like crying for her when I went in.  There she was, head bobbing on that awful chair, obviously after sitting there for hours on end, not moving at all.  I got two steps from her when she started to heave.  A bowl full of bile later, at 11.30 am, eyes hooded and miserable, I asked them to put her to bed.  They didn’t want to.  Lunch was coming soon.  Really, lunch, after her just vomiting……

Then they told me that if I wanted her put to bed, they wouldn’t feed her, as they didn’t agree with eating in bed, even with the back straight up.  I told the male nurse that she was miserable, and just to look at her.  He said she looked fine to him.  Honestly, if that is fine, I’d hate to see how close to death someone has to be, to look ill.  I told him what they were doing to her was cruel.  She doesn’t sit up for 15 hours a day, in a straight back chair that forces her head forward at home, so why should she be made to do that in hospital.  It’s not as if sitting in that chair is helping her to be mobile, as she’s not moving when she’s in it, at all.  She gets far  more movement having repeated stints of up and down from bed to chair, so she can rest in between.  I suspect it’s got more to do with not having to change the bed when she wets it.

Ten minutes after putting her to bed, she needed the toilet.  I told the lady at reception, and got told that dinner had started and she’d have to wait thirty minutes.  Really?  Thirty minutes for a sick woman, recovering from a broken hip op, vomiting every day regularly, eating hardly anything, massively suffering from dementia, still hallucinating and still struggling to control her hands.  No way can she listen to having to wait.  Disgusted, I told them to enjoy the wet bed in thirty minutes and went back to her.   Tears were flowing down her face when I told her they’d have to get the machine again.  They came a few minutes later.

True to their word, they didn’t come to feed her at 12, so I did it, even though she still felt nauseous, then I cleaned her filthy nails, shaved her chin, and brushed her teeth and tongue, which were disgusting.  A rehab ward is no place for a sick woman, that’s for sure.  If they let her relax in the morning after she gets dressed, she’d be in a better place to do rehab, then rest again, but that blasted chair needs to be scrapped from use for actual sick patients.  It’s damned cruelty what they do.  She’s still not seeing, and I had to really press it with the doctor as her sight was pretty good the day before she went there, and now it’s pretty bad.  They’ve messed with her anti-depressants and she’s heading downhill, and there’s no need for that to happen at all.

They simply don’t have the time for her.   She doesn’t make any fuss.  She can’t physically make any fuss.  I’m pestering them to take her to the toilet, my brother has fallen out with a couple of the staff now, and she’s the only one in her ward who is immobile.  The rest are all physically able and can make their needs known.  She can’t.

I’m absolutely disgusted with that chair more than anything else.  Far more than the days they ignored her hallucinations and inability to see.

So there you have it.  This week, on top of the kids, work, and having to go to hospital to check she’s had a rest, my time has been swallowed up, and then some.  Hopefully service will resume as normal in a little while.  I just wish she’d become a bit more vocal and be able to press that buzzer for help, but it’s never going to happen.

To end with, don’t get me wrong, there are some lovely people there, but they have a schedule to stick to, and she’s not fitting into it.  She’s lived with me for so long, it’s like having my child in hospital, so yes, I’m becoming annoying to them, but I had a fabulous mum, and she deserves someone fighting in her corner to make her as comfortable as possible while she’s going through tough patches.  I suspect I could get her on her feet again if she was properly rested before physio started, but they’re not prepared to do that.   That torture chair must be on their tick tick list.  I don’t know how this will end, but based on hospital care, it’s harder going for her than it should be.

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I have Tinnitus. What is it?

I have what I guess is likely to be a milder form of Tinnitus, but it’s still there all the time.  For every second of every day, it keeps me company through thick and thin.

My tinnitus is like that of 1 minute 44 on the video below, with just a higher pitch.  It used to be combined with the heart pulse noise immediately after that, but after suffering with it for two years, the pulsing tinnitus has eased off a lot.  I suspect that was more down to an inflamed inner ear than actual tinnitus itself as I have a nerve very close to my main vein, according to my ENT specialist who tried to pin it down for me a few years ago.  At about 3 minutes 55, is how highly pitched mine is.

What is Tinnitus?

Simply, it’s a blooming nuisance.  It’s loud, always there and drives me to distraction when I’m trying to sleep.

In acceptable terms, it’s a loud noise we feel in our ears, causing noise in our heads.    The noise can be:

Buzzing, humming, grinding, hissing, whistling, beating, throbbing…. You get the picture?

There are different forms of Tinnitus that are more rare.  The pulsatile kind that I used to also have, has an easier explanation with the real heartbeat to cause the feeling.  Some people even have musical hallucinations, where they hear whole songs.

What causes Tinnitus?

Loud noise probably helps it along, and it’s the one thing everyone seems to think about with Tinnitus, but it’s only one factor.  I’ve had very mild Tinnitus since my late teens.  The worst thing about it, is knowing, that never again in your life, will you experience total silence.  That’s actually quite distressing at times, though I have learned to live with it most of the time.  I dread how bad it must be for those who have severe Tinnitus with extremely loud noise.

I can pin down the worst of my Tinnitus to the time the pulsing started in one ear.  Those two years were horrific.  I couldn’t sleep, my head felt fuzzy, and as if I were hearing through cotton wool.  I went to doctor after doctor, appointment after appointment, always being told there was nothing wrong, then one day, I woke up, the ear popped and the worst of the pulsating disappeared.  What I was left with, was an increased level of Tinnitus in my right ear, with the same level of my high pitched whistling Tinnitus in the left as before.  My Tinnitus is now very lopsided.

I have some degree of hearing loss in my left ear, but it’s not too major.  It’s certainly liveable with.  For me, the worst Tinnitus was caused by inner ear damage.

The NHS says this about inner ear damage:  “If part of the cochlea is damaged, it will stop sending information to parts of your brain. These areas of the brain will then actively ‘seek out’ signals from parts of the cochlea that still work. These signals are over-represented in the brain and cause the sounds of tinnitus.”

There are other things that could cause Tinnitus, such as earwax, infection, a perforated eardrum and yes, those dreadful loud noises as a child / young adult, when we thought we were invinceable.

How to Treat Tinnitus

Sadly, there isn’t really any way to treat it that’s actually helpful.  The only thing I’ve found is distracting myself from it.

Although mine is there all the time, there are some points in the day when I’m more conscious of it than others.

If you’ve blocked ears etc, some medical intervention might help, but for many of us, it’s simply a case of managing the noise in our ears.

I notice the noise most when it’s quiet.  The noise feels all encompassing then.  It’s so loud, that in the absence of other noise, I can’t possibly imagine being able to hear anything else on to of the sound, yet at the drop of a pin, I can hear it through the other noise in my ears.  I’m not quite sure how to describe that, but it’s very deceiving.

I’m getting used to my noise.  Mine is annoying, but not debilitatingly so.  I can blot some of it out.  Bedtime is difficult as I have to sleep on the worst affected ear.  Somehow, it helps to drown the noise out to lay on it.  On really bad nights, especially if I have a cold, I tend to use music under my pillow, making a noise I can hear through the high pitched hissy singing tone.

The Future

Well, mine isn’t going to get any better.  I really do have to learn to live with it, and be prepared for the time I could get worse.

I deliberately stay away from loud noises, in case it makes the problem even that teensy bit worse.  If you invited me to a disco, I’d probably have ear plugs in, well hidden under my hair.  I might have to ask you to repeat what you’re saying, but at least my ears won’t deteriorate any further from loud music.

If you have Tinnitus, take care of the noise around you.  I suspect it really does matter.

 

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Car That Fits A Wheelchair in the Boot. How Hard Can It Be?

Well, we’ve been at it for nearly a year now, this manipulating an unsteady person anywhere she needs to go.  It’s been a full year since my mother had the first of two nasty infections, from which she’s never fully recovered.

What did change, was her brain.  Damaged, and with significant vascular changes.  Her physical strength and arthritis has deteriorated to such an extent, that she finds it difficult and painful to walk more than a very short distance.  Over the last year, her short term memory had diminished significantly and her confidence to go out is totally shot.

From someone who ‘had’ to go out at least once a day, I’m lucky if I can get her out of the house once a month.  It’s not good for her, and it’s not good for me being trapped in the house so much, only being able to leave her for spells that rivalled elderly dog ownership, as her insulin levels have to be checked regularly.  She’s not safe with medication or her insulin on her own, and if she takes a  hypo, there would be no-one to help her.  She cannot manage her testing kit for herself.

Where I thought I’d have an easy time, was finding a wheelchair friendly car, that would also double as our family car.  Both our cars are on the way out.  The Discovery has given up the ghost and she can’t get up and into it now. anyway, so it would have to go, even if it was still behaving itself.  It’s beside the point that it’s leaking water and the electrics are dodgy.

The man could fix it, but he’s never got the time and he won’t pay for someone else to do what he can do, so it’s at stalemate.  I do love the Discovery, but if it were garage maintained, we’d need a whole new mortgage to keep it up.

Wheelchair

We also have an old Vauxhall family car that has a fault somewhere that keeps draining the battery.  The fix would likely cost far more than the car is worth.  I do need a car that doesn’t need jumpstarted every second day, and I’d like to find the information I’m looking for online, but it’s harder than it looks.  I did consider a Vauxhall Insignia, but they’re too low for her to get in and out of.

All I want is a car that will take a bog standard manual wheelchair, one that’s not too low so that I don’t break my back getting her in and out, and not too high, so that I have to lift her in either.  Oh yes, I also need to fit 5 people in the car, and I don’t want to pay a fortune in road tax every year, nor pay a whack on customising a family car.

I also can’t face the Citreon Berlingo, nor the boxy cars.  It’s my car.  I know we all have different ideas of what is nice and what’s not, but I don’t want to saddle myself with what I see as a horrible looking car, just because I need one that fits a wheelchair in the boot.  Selfish, maybe, but it’s my money, and I should be able to spend it on something that suits our family, not something we’re stuck with because there’s nothing else.

Can I find the information I need online?  Perhaps I’m looking in the wrong places.

There’s a large proportion of the population who need wheelchairs, so I can’t believe how difficult it is to find out if a car boot can take one.  You’d think with the money spent on advertising and lovely glossy brochures, that there would be something in them.  A line somewhere that gave an indication of suitability for wheelchairs.  Yes, I can see boot dimensions, but given the angle of some boots, they can look big enough in theory, but if it narrows in the wrong place, a wheelchair won’t fit in, and I’d like to carry some shopping at times too.

Before I go to look at a car, I want to know it will fit the wheelchair, otherwise I’m stuck to lugging the thing around with me and taking it out at every car dealership, which is a pretty daft way of going shopping.  Why do they mention cup holders, bluetooth connection, seat warmers, and neglect to add a pretty basic feature?  Perhaps wheelchairs just aren’t sexy enough, or, as I said before, I’m looking in the wrong places, but if I am, then shouldn’t it be easier to find the right places?

I will say though, that I do like the look of the hybrids.  I’m tempted to look for a Toyota Prius, or the smaller ones along those lines.  I did consider the Nissan Leaf, but the driving range would drive me round the bend, though guess what…I don’t know if they’re worth looking at, as I don’t know if a wheelchair will fit in the boot……..and I can’t be bothered going to find out.

I may just pick up a banger from the car mart to tide me over,  because I can’t decide, and don’t have time to visit dozens of showrooms to find out.

Have a good day all, and hope you all stay safe in the windy weather.

 

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Drinking When Pregnant: Woman refused a glass of wine by barman.

Wine AlcoholDefying my ability to understand human nature, I am in the court of the poor barman who has probably been hauled over the coals for taking a stand and refusing to serve an obviously pregnant woman with a glass of wine.

It also defies my belief that a heavily pregnant woman would want to go drinking when pregnant and have a glass of wine in the first place.  Yes it’s her choice, but for goodness sake, what about the baby in her belly.  Do women really not realise that alcohol passes through to the foetus unfiltered?

I know that one glass of wine gets me tipsy nowadays so I really do have to wonder just how tipsy it would make a bubba growing slowly in a belly.

I live with a child suffering the effects of someone else’s drinking as a pregnant woman and I feel nothing but disgust for anyone who isn’t an alcoholic choosing to drink while they are pregnant.  I can understand alcoholics as they’re driven by cravings and need, with an illness that is as hard to break as any drug or food obsession, but I can’t understand why someone would want to drink alcohol when they can choose not to.

So, the short version is that someone past their due date popped into a bar for a glass of wine and got refused.  And the barman was slated for it.

If someone really had done extensive research on the effects of drinking alcohol while pregnant, I’d find it hard to believe that they’d then choose to have one, but each to their own.   They do have to realise though, that other people have their own code of moral conduct and there are other people who just cannot stomach seeing that happen.

The Telegraph quoted

“The barman came up to me and said he wouldn’t serve me because he couldn’t have serving a pregnant woman alcohol on his conscience.”

The woman states:

“I felt like asking whether he refuses to serve fat people pies, or whether the bar checks how much caffeine a woman has consumed that day before they serve her a cup of coffee.”

Well, the fat person eating pies, or the woman drinking caffeine who isn’t pregnant – aren’t taking risks with anyone else’s life but their own.

The Telegraph also stated:

“The NHS advises that pregnant women should drink no more than 1 to 2 units of alcohol, the equivalent of a small glass of wine, once or twice a week to minimise the risk to their unborn child.”

Ding, ding, ding.   Disappointing for the Telegraph.

The NHS actually states.

The UK Chief Medical Officers’ advice to women is:

‘Women who are pregnant or trying to conceive should avoid alcohol altogether.  However, if they do choose to drink, to minimise the risk to the baby, we recommend they should not drink more than 1-2 units once or twice a week and should not get drunk.’

It also states:

“If women want to avoid all possible alcohol-related risks, they should not drink alcohol during pregnancy because the evidence on this is limited.”

The NHS goes even further to say:

How does alcohol affect my unborn baby?

If you drink alcohol when you’re pregnant, the alcohol crosses the placenta into the bloodstream of the unborn baby and could interfere with how it grows and develops. In the absence of its own blood filtering system, the foetus is unprotected from any alcohol molecules that cross from the mother’s blood.

Alcohol can cause damage to an unborn baby at all stages of pregnancy. Drinking during pregnancy has been associated with:

miscarriage (over 9,000 women are admitted to hospital every year for miscarriages caused by alcohol [NHS Information Centre Hospital Admission data])
low birth weight
heart defects
learning and behavioural disorders

Yes, it’s a womans right to make her own choices, after all, it’s not illegal.

It’s a pity the baby doesn’t have any rights whatsoever until it’s born.

Would the same women who want to glug a glass of wine in pregnancy fill a feeding bottle with wine and have their babies chug down a glass of wine?

You won’t find any foster or adoptive parent who cares for a child affected by the mothers drinking in the womb approving ANY alcohol whatsoever.

Three cheers for that barman.  He is my hero of the year.

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You’re a “gobby shite.”

With hindsight I could have avoided being the epic parental fail that comes from having too much confidence after one successful outing.

With middler in asentia on Tuesday, visiting a play frame went really well.  Being exceptionally cocky and suffering a mini brain impediment, I went back with a friend and our kids after after taking them for an unusually pleasant swim.

Still basking in the success of Tuesday, my brain conveniently forgot middler wasn’t there.  Mindful of the meddlers who keep telling me that I need to give middler a little bit of freedom and saying things like “aww, you’re really big enough do “this” or “that” on your own, I accepted the inevitable disapproval of the smothering mother brigade who think he is just overprotected and needs to get some freedom from adults, and threw caution to the wind.

BIG, BIG mistake.

Congratulating ourselves on possibly finally reaching the hallowed stage of play frame parents in absentia, we sat outside the play room at our table.  Freedom is one thing, but this 11 year old of mine still needed to be kept close.  It seemed to be going well, so I gritted my teeth, let them get on with it and we ordered lunch for the kids.

During pudding, a member of staff came over with an older woman whose jacket matched her flushed cheeks, and the two boys she was with.  Instantly eyeing up the kids at the table, I thought I knew who was in the firing line and was prepared to read the riot act and not allow mine back in.

She had the misfortune of going on the attack.

“Your kids, yada yada yada.”

The kids said she called them “gobby shites.”  She denied that at first, but had to back down and admit it when eldest backed up the two youngest in the spotlight for that.

Pointing the finger at a group of kids and then rattling off to them in front of me isn’t going to get my support either.

“You told me my mum must be proud of me.” said friends son.

“That’s right.” said angry woman.  “She must be really proud of you, your behaviour is terrible.”  It’s clear she thinks friends son is my son and I don’t bother saying he isn’t.  It’s clear she also thinks our kids are badly brought up hooligans.  Our wild air dried swimming pool hair, slap free faces and casual clothes do nothing to correct the impression that we are anything but minky tinks.

“Oh” says I,”you’re being sarcastic to them too then?”

She’s getting annoyed by this time, stuttering, shaking her head, voice cracking, pointing her fingers at the kids and arguing with them.

She pointed at friends fostered son with visible special needs and included him in it.

“He’s got special needs.”  She looked at his face and realised how disabled he was and backed down.

She then included middler.  I was bored of her by this point, so although I was quite sure middler was no innocent, I calmly tell her that he was disabled.

That left three possible culprits at the table.

Eldest held his hands up and said “don’t look at me, I didn’t get involved.”

Then she was left with 2 kids who had a falling out with her 2 kids.  All 4 kids seem about the same size.  It all really boiled down to boys having an argument.

I wasn’t prepared to rise to the bait or get into an argument as she came over spoiling for a fight and determined to prove to herself how badly raised our kids were.  I had no intention of getting into an argument but I did say that if she had wanted to talk calmly about it, I would have been prepared to listen.  She stormed off in a huff, still in high dudgeon and I would guess family at home will have been regaled by tales of horrific children with devil horns and forked tongues.

I’m always prepared to listen to someone (and act) if any of my kids have been OTT, but coming over ready to rumble isn’t going to get my sympathy.

On the way home, eldest decided to tell me the two boys  had been making fun of middlers hand actions when he gets excited.  Our two kids who got into a brawl with hers had been annoyed.  When middler is happy or excited, his hands go up to his face, he clenches his fists and he makes involuntary noises that sometimes embarrass him.  Apparently this woman had also been mimicking his hand actions when she was annoyed with him, instead of coming to get me.

I don’t know exactly what happened as I never saw any of it, so there is little I can really say.

If she’d come up calmly to talk to us, I could have dealt with it, removed kids and sorted things out.  I am actually quite reasonable and prepared to sort out kid disputes.  As it was, I couldn’t listen to someone so hyped up in anger that they just wanted to argue with a group of kids.  The whole point of behaviour modification is not getting angry with angry kids.  That gets nobody anywhere.  Since middler didn’t seem to be directly involved, I let them back to play.

Another BIG, BIG mistake.

Forgetting we were reaching the stage of medicine wearing off, I kept my fingers crossed while I enjoyed a chat and a soft drink.  Staff approached again.  This time it was middler himself.

A younger girl had thrown something which had landed on middler and he then went after the girl, completely inappropriately.  So much for giving him a bit of freedom.

It’s the first and very LAST time it will happen until he leaves my home.

AND, I am officially the shitty parent who let her kids run riot and am thoroughly disgusted with myself for even bothering to try it.

I tried to find the parents of the girl he went after to make him apologise, but I couldn’t find them.

I doubt we’ll be back to that play frame with middler, it’s just too much hassle.  Even if we stayed inside the room, most of the play frame is out of sight so you can’t see what they are doing anyway.

What on earth were we thinking to let two disabled kids go into a play frame with their brothers ??

 

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Did you drink alcohol when you were pregnant? Do your kids misbehave? Read on..

Pregnant and Alcohol

Ok, the Daily Mail isn’t my favourite newspaper and this is one topic that will always be close to my heart (and the blog).   That aside, a friend showed me an article from today on page 15.

In a nutshell, it is talking about the prevalence of children in our society who are affected at varying degrees by Foetal Alcohol Syndrome, or Foetal Alcohol Spectrum Disorder which is milder but still affects day-to-day living. They estimate about 1% of our children suffer from Foetal Alcohol to some extent, but that it really is the tip of the iceberg.  It’s a fairly responsible article and explains how drinking alcohol is pregnancy can have far more lasting effects than smoking.

Lets have a look at what to watch out for with some basic signs and symptoms in your kids if you drank at all while you were pregnant:

FAS or Foetal Alcohol Syndrome is the biggest cause of mental health problems and retardation in kids today.  Not all children with FAS will develop retardation, and many may show up as behavioural problems.  Those with the associated issues that are outside of the main FAS diagnosis tend to be missed or diagnosed with something else.

Some signs to look out for:

– Disruptive behaviour.

– Difficulty in understanding concepts.  May learn to read & write easily, but struggle with comprehension of what it is all about.

– Generalisations, ie thinking of things in terms of black and white and often taking what is said literally.

– Shot term memory problems, ie ability to learn, but forgets very quickly and has to keep being reminded how to do things.

– Schools may think these children are just being lazy.

– Sugar cravings.  Many parents of FASD children have noticed that their children seem to be addicted to sugary sweet foods.

– Conscience could be underdeveloped so may steal and lie without fear or consequence.

– Finds difficulty coping with new situations.

– May over-react to small changes in a daily routine.

– Seems more immature than their age in years.

– ADHD and ODD type behaviours which may not respond to traditional ADHD methods of management.

There’s nothing to be ashamed about in recognising what a child’s difficulties may have been caused by, so if you suspect it, get it checked.

It’s not easy to get diagnosed locally, and there are places to help.

Mencap NoFASUK – National Organisation for Foetal Alcohol Syndrome UK

FAS Aware UK – Foetal Alcohol in Pregnancy & Forums

FASD Trust – For Parents and  Carers – Information

To finish, all I can say is, that for the sake of your future children, if you are pregnant, are trying to get pregnant, or think you might be, don’t drink alcohol – AT ALL.

It’s the only sure-fire way to ensure your children can have the best mental health start that they can, without the possibility of any Alcohol related brain damage.

Foetal Alcohol destroys lives.  Don’t let it get into your family.

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Conquering my fear of couch sport to watch the Paralympics coming soon?

Having 3 boys and a man in the house means that I tend to be in a place of mummydom dread, fear and anxiety when it comes to sport on the TV.

I can think of nothing closer to the ear-splitting sound of scratching fingernails down a blackboard than having to watch a dry run of sport and see the defeated faces of the losers while they watch the animated faces of the winners.

For me, the Paralympics is different to the big main event that has just finished, and it’s different to Wimbledon or the Golf Open, or actually any of the other sports that I would be obliged to sit and watch while forcing silence through my gritted teeth.  Luckily, I have some electronic gadgetry that allows me to do my own thing and avoid the jump and punch the air moments that boys love when their favourite wins.

I remember as a 15-year-old, that my 22-year-old brother and his 6″7 pal were sitting in the lounge while Celtic played an “important” match.   Yeah, yeah, I hear ya, he’s an Aberdonian supporting Celtic – there are bigger problems in life.  Anyway, Celtic were down 1 nil, then a curved ball slipped into the net to equalise at a crucial moment.  Two men the height of double-decker buses leaped off the couch, punched the air and smashed the glass light fitting to smithereens.  All over the three of us.

Just why we automatically open our mouths to inhale sharply when something goes wrong is a COMPLETELY FREAKISHLY BACKWARD step of the evolutionary ladder.

The haunting memory of glass shards embedded in my hair, with the resulting spitting blood and glass was enough to forever put me off watching any kind of couch sport where there is any remote chance whatsoever of anyone winning anything.

Swallowing my squeamishness, I intend to conquer my sofa fear to cheer on the Paralympians who will be playing and fighting hard at the September Paralympic Games.

Cheer them on, but watch you don’t smash any glass….

 

 

 

 

 

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FREE Telecare Systems for Special Needs, Eldercare or Disability

This post isn’t one for bleating or winging about what some of us can’t get, or miss out on for our disabled or elder care families.  This one I am actually very pleased with and at the same time, massively surprised about as it seems to be UK wide, but at what levels I am not quite sure.

It started at parents night at middlers special school.  The alarm system man was there to show off the systems that can be used to help families who need to know what is happening through the night.

Imagine waking up by hearing a crying child who’d been kicked out of their bed.  Imagine hearing a noise downstairs and then investigating to find a child with front and back doors open and four burners of the gas turned on !!!!!  The potential is enormous for many parents of special needs children.  Our solution was to have one adult sleep downstairs permanently.

I had asked doctors, consultants, social workers and more for solutions to it, and the only answers I could get were to lock the doors so he couldn’t get downstairs, or put new doors on so that they could be locked.  I had visions of horror in the event of fire, or if something happened and the kids couldn’t get downstairs or out of the front door as the key is under my pillow.

Cutting a long story short, coming across these alarms is kind of bitter-sweet.  We’ve struggled for years, when there was a solution on our doorsteps, and one that the council also provides for free here.  The only charge is for things like elder care fall alerts at  £1.80 a week to link up to a call centre.

The equipment is free for us in Aberdeen, and it looks free from a lot of the local authorities I’ve had a look at.  I think Aberdeenshire is £4 month, but I think most people could stretch to that for peace of mind.

After persuading my mother that she needed an alert too after falling downstairs and making this mess of herself, she finally gave in to the fact that there needs to be some way of raising an alarm when I’m here as well as when I’m away.  I was two rooms away and had no idea she had fallen face first from the top to the bottom of the stairs.

The picture was 2 days after falling.  By 5 days, the bruising had joined up under her eyes and cheekbones.  The kids said that her bruises were “growing”.   Although she looks nowhere near her 77 years, she has arthritis which makes falling actually quite easy.  There were no broken bones which amazed me.

She has two pendants and a wrist watch style fall alert.  If she falls with the watch on, it automatically sends an alert to my wrist watch and to the care centre, just in case I don’t hear it.   She can use the pendants to either just get my attention, or to go to a call centre for help if I am not here.

We have a door alarm on middlers door which is actually quite small (wandering alert).  It goes to a unit which I keep beside my bed and wakes me up if his door is opened.  He doesn’t know how I know that he has left his room and I can usher him back to his bedroom and safety.

Alert Handset

In Aberdeen, they are raising awareness of the systems as too few people seem to know about them.  My first question was “how much will it cost”.  Sceptical as usual….    The equipment was installed within 2 weeks of my initial self referral.  An assessor came out to do an assessment of what would be needed, and two fitters came a mere few days later to install all the equipment.

The service was absolutely amazing, and I don’t say that lightly.

If you know someone who could benefit from peace of mind, let them know to look for it in their area.  They really are worth having and I have to say it again, I have been enormously impressed by the Aberdeen Telecare Information Service.

We’re sleeping easier and the wrecked lounge come bedroom is getting a makeover to celebrate it’s return to being solely a lounge.

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We’re jinxed…. Just send us the bill….

Image: digitalart / FreeDigitalPhotos.net

You could be forgiven for thinking I’ve thrown in the towel and decided to be Miss Misery Guts this week.

Looking back on it, it’s not going to be all plain sailing to fix, but hey, we’re all alive, and I can afford to put food on the table for my kids.  So – why on earth have I been finding myself almost biting my nails and nervously chewing my hair with appliance breakdowns?

Answer me this, just who invented the full moon phase?   Whoever that was must have been a wizard of epic proportions to be able to smite us down with such a wave of an electric wand.

I’m not in the slightest bit paranoid for thinking that the lunar phase of the mood is responsible for the breaking down of electrical currents, and the shortening of the lives of our favoured and prized household machinery gadgets.

Starting slowly, the trouble brewed gently.  A fridge that doesn’t keep food cold is no use in a home where you need a week worth of school dinner ingredients on those hallowed cool shelves.  Buying fruit on Friday and having it go rotten by Monday really hits home about how we depend on our American Style Fridge Freezer.

After three weeks of looking for a side by side American style fridge I could afford, I admitted defeat and signed on the dotted line for an early delivery on Thursday this week of a regular American style fridge freezer.

The dishwasher chronicles have gone on for a while, so it was no stranger that it decided to give up the ghost and join the old fridge freezer in the graveyard for electrical appliances.

That would be enough for most people, wouldn’t it?

Not for us apparently.

With a rare blast of sunshine on Thursday, kidlets went out into the garden to play a little footie, as you do when you’re an adolescent boy wanting to show off your newly found testosterone injected strength.

Good neighbours are hard to find and we’ve got two.  Thankfully neighbour across the fence next door understands the problems with middler, even if we rarely ever see or speak to them.  Middler had decided to start bullying them, which ended in two broken windows in their newly (expensively) built extension,as he decided to use their window as target practice for the chuckies around our patio.

Profuse apologies and embarrassed conversations led to taking measurements to get the toughened glass window units replaced.  Thankfully we have contacts who have given us the units at cost, and we can also fit them for zero labour charge.

If we’d had to pay labour, we’d likely have been into the thousand bracket instead of the hundreds to fix.  Middler is now grounded for the rest of his natural born existence.

Friday morning came and went in a flurry of activity and under breath muttering as I blamed the man, completely unfairly, of switching off the boiler before he departed for money making activities.

Getting the kids ready for school with chattering teeth and cold showers really made the start to my day complete.  With massive foresight, I refused to go for a combi boiler when we installed our last one and insisted on the dual, so we still have the gas fire in the lounge and electric for hot water.

The engineer has been and he’s not sure if the fan has gone, or if it is just the transformer so another 3 day wait for a teeny transformer.  If that doesn’t work, there’s no point in getting the fan as it costs about half the price of a new boiler.  What’s worse is that the boiler is only about 7 years old, and I’m gutted at the cost implications, especially as the one I grew up with chugged along for over 20 years.

Tuesday came and I decided to vacuüm the lounge.  This proved to be an exercise that needed much wrestling with tube, hose and uncoupled couplings care of Dyson jigsaw puzzle hoovers.

Determined not to get to appliance 4, and disaster 5 of the week, a pair of sugar tongs managed to shift the contents of the last hoover user, a 12 year old whose top drawer is likely to have been vacuumed, as it is the hiding place he stuffs empty sweetie wrappers he has illicitly procured from the kitchen.

What more can possibly go wrong?

 

 

 

 

 

 

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Undercover Elder Care on Panorama – Abuse of our Elderly – Rant Corner

I’ve just finished watching the Panorama programme about Elder Care, where a woman tells her story of how her mother with Alzheimers was abused by the very people who should have cared for her.

Suspicious about bruises that had appeared on her mother’s body, she recorded video footage from a hidden camera which showed her mum being more or less thrown into her bed at 5.30 pm by two carers from the Philipines.  They talk in their native language and manhandle her poor arthritic body disgracefully.

Several carers come and go and don’t really speak to her.  The TV is switched on and off for the carers benefit and in the morning, she is bathed by the same carers who saw her last 13 hours earlier, slapping her hands away when she protested in pain.

One carer complained about the low wage at about £6.50, so what we have is a culture of angry people taking care of difficult patients that the carers really can’t be bothered with.

The breakfast carer ignores Maria, and she is speed force-fed by a carer who doesn’t speak to her.  The carer puts on the TV to watch it for herself, and switches it off again when she leaves.  Maria is left to stare at the ceiling for most of every day.  They treat Maria as no human should be treated.

Maria’s daughter said that she had lived in that environment for a year.

Although against company policy to have a male carer alone with a Client, a single male carer treats her roughly, twists her arm, hits her and swears at her.  There is no compassion, no care, and no help from the people she needed to help her.

He lifted her by her head and when she cried out, he slapped her in the face.  He hit her 6 times in while he gave her a wash in the morning.  Recruited from overseas to work as a nurse, he was trusted, and failed the woman he was paid to care for.  Maria, unable to shout for help, in permanent pain from her arthritis, and a victim of sustained and deliberate abuse, was a helpless victim and an easy target.

By the end of that programme, I found myself crying for the predicament Maria (and the hidden sufferers) find themselves in.

I’ve touched on abuse in homes before, when I blogged about the Castlebeck Affair, and I recognised that it is likely this type of thing goes on in care homes up and down the country, but Castlebeck had warning signs that people ignored.

This is from a home that had a good reputation.

Why did the home allow this to happen?

Ash Court responded that the abuse Maria suffered was an isolated incident.  Well, I’m not going to apologise for saying that an answer like that really doesn’t give me any confidence that our kids, elders and disabled are really being protected from abuse when the Companies are employing cheap labour who can hardly speak the language, let alone have proper training to care.

The CQC report doesn’t seem particularly helpful either, and this is where I struggle.  Those of us whose relatives need residential care need to know our people are being cared for.  It’s inexcusable to say that if they had found abuse they would have taken action.  The majority of hopefully isolated bullies carry out their abuse when nobody else is looking.  Where this gets worrying, is that it was 5 different carers in 2 days carrying out the abuse.

I do strongly believe that all carers involved in looking after any of our people should be paid a fair wage to attract good quality carers.  They should also be able to speak the language of the people they care for, to a good enough level to be able to communicate with the people they are looking after.  The last stipulation should be that they have a minimum specified amount of training on how to treat vulnerable people.

When I was much younger, I once walked past a care home and an elderly man was banging on the window and shouting help from a second floor room.  Instead of acting, I walked past as I saw a carer enter his room, thinking that he would be properly cared for by the staff.  I want to kick myself for that now, as the care home had a bad report a short while later.  I wouldn’t make the same mistake again.

I am glad that my grandparents were both cared for at home.   My mother drives me batty at times, but I would struggle to let her stay anywhere that I think she might not be looked after.  I also know that for every bad care home, there are probably dozens of fabulous ones, but we don’t know what is going to happen when we put them under someone else’s care, do we?

As a teen, I did some work in an old people’s home for my Duke of Edinburgh Award.  Yes, I hated most of it.  I was very young, and in a place that stank of wee and poo, and with old men and women ordering me around.  I wasn’t disrespectful, even when an old woman called me her servant, although I tried with all my might to avoid helping out in her room.

I did enjoy the common rooms and talking to the residents when they had lucid moments, and reliving some of their lives with them.  I regularly helped an almost bed ridden cancer patient get his illicit baccy supply, and I’d get him up into his chair and wheel him out for some fresh air while he puffed his lungs black.  It was a sad day when I turned up for my shift and he was gone.

For many vulnerable inmates and residents, there is nobody to care.   For goodness sake, even our prisoners get treated better than lots of our vulnerable citizens.

Controversial, yes, truthful, yes.  I am not ashamed of that.  There must be valid reasons for the human rights of our care home residents to be treated with respect, and have their time filled and occupied by people who actually know what a heart is.

The concerns in my Castlebeck Panorama blog post haven’t changed, and every story like this just puts the notch of anxiety just that little bit higher on the top list of things to worry about for special needs children through their lives.

People are so cruel, but others are so kind.  I don’t believe in the retribution from God things, or all things happen for a reason.

The only things I believe people have to fear from in this world are :

1 – Other People

2 – Other People

3 – Other People

4 – Natural Disasters & Unforeseen Circumstances

I don’t actually blame all the carers who find themselves in this vicious cycle as they’ve generally been failed too.  They are often put into situations they have no idea of how to act in, and often work unsupervised, untrained and very understaffed.

I do completely blame the stupid money grabbing greed of the corporate investment and capital finance world who insist on making care a business with huge profit margins to make.

If the corporate big wigs took less profit, carers could have more training, go through more rigorous recruitment schedules and see care as a “career” and not just as a temporary stop gap that they fully resent until something better comes along.

I also appreciate the wonderful carers who do exist out there, and for whom people who act like those in Ash Croft and Castlebeck give a bad name.  How must they feel to see what goes on in the no hope homes?

Yours disgustedly at seeing more evidence of senseless abuse.

Scottish Mum Blog