Falling into the Mental Health Abyss

We’re all told to mind our mental health, so practice self care and mindfulness, to talk about our problems, and pace ourselves. But what happens when that is not enough? What happens when you beg for help and it simply isn’t there?

I am dealing with this situation in relation to a family member right now; it is completely overwhelming and a huge struggle. It’s hard to think clearly about the problems here, let alone define the problems with the system, but others who’ve faced this before do understand and can see clearly, and it was comforting to read these words of wisdom from Jackie (@ja54kki) this morning, and please follow her on twitter.

When we had a major crisis here in the past , the services were basically the police. I remember asking an Educational Psychologist years ago if CAMHS (Child and Adolescent Mental Health Services) provided an emergency service – and the answer was ‘no’. There’s the gap that needs to be filled.

The police can only do so much. Accompany you to A&E if needed, and/or stay until things have calmed. Paramedics can help with injury and arrange emergency medication through an emergency GP. Then, you’re left. No support in place.

I believe there is an emergency social services number for a bed, but how the hell could you place an already stressed and anxious young person in a strange setting with strange people? Where is this “ wraparound” care I used to hear about? More meaningless jargon.

There needs to be support in place to come to your home in an emergency. Very often a fresh face helps to de- escalate. Not rocket science. We need a service like this desperately, we shouldn’t have to use police services in this way. Not fair on them or us. 

What do you think?

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No place for disabled people

The handles of her wheelchair were touching the door. The footplate was touching the toilet seat. If she could stretch out her arms, she would easily have touched the walls on either side. This was the disabled toilet in our local accident and emergency department.

My daughter wasn’t even the patient. But I am her sole carer, so if I have to go somewhere outside the hours of her day programme, then she usually has to come too.

I had to seize an opportunity and we left the house in a mad rush, just a few random things thrown into bags and hung off the back of the chair. No time for her to use the toilet, I just had to hope that there would be a usable facility available and that we wouldn’t be waiting too long. I *may* have been a bit too optimistic.

Phone calls were supposed to have been made, and we were promised we would be met on arrival. It didn’t happen. And when I saw how many people were waiting to be seen I understood why. There wasn’t an empty chair to be seen. Luckily my daughter was okay – one advantage of bringing your own seat with you everywhere you go.

Once I realised we were in a queue of indeterminate length, my first priority was getting help, and this is where Facebook is a life saver for me. I did text a couple of people first, but they were not available. And yes it was close friends who responded again, but I felt more comfortable putting out a general plea instead of approaching them directly and perhaps making them feel pressurised.

Being stuck in A&E means very little choice of food and drink, especially if you have a disabled daughter who needs a mashed diet. Again my friends were able to bring something suitable for her, and later a bag of (very good) chips for myself and the patient.

But my friends couldn’t really help with B’s toileting needs. I had to sort that out all on my own. I sat on the toilet seat and changed her while she lay half out of her moulded seat – dangerous and uncomfortable for both of us. I’m still amazed I managed it at all.

Later she was crying due to needing to go again, but I was trapped while the patient was getting attention and there was nothing I could do to help her until I got her home.

Really hospitals are no places for severely disabled people, even though the busy staff were friendly and welcoming and made sure we were seen quickly.

This particular hospital is due to get a new Accident and Emergency Department soon, and I really hope that a changing places toilet with a bench and hoist is part of the plan.

My daughter is very healthy right now, but that could change at any time, and she should have the same right to a suitable toilet as everyone else.

Left Outside Alone

It’s Budget Day today in Ireland and for all I care it could be Budget Day in Outer Mongolia. I used to care. I used to march, I used to campaign for better healthcare, universal child benefit, better services for disabled children and adults. And what has happened? Almost nothing. Even though we now have a Minister for people with disabilities, very little has changed, except for the lucky few.

I can no longer bear to listen to most politicians, as they don’t sound genuine any more. I feel ashamed of my former profession – public relations – which was supposed to be about good clear communications, but is now about spin. When a trained politician speaks you cannot trust that anything is true, what they say, how they say it, or even the tone of their voice, because everything has been rehearsed and planned, and that goes for many representatives of organizations and companies too.

On the other hand, I do think that most politicians work extremely hard, and don’t get credit for that. I think many go into politics with high ideals, but lose their way, due to the shiny baubles of power, influence and pay. Just look at our current President, who said he was only going for one term, but is now looking to be re-elected for another seven years. People tell me he’s doing a good job, and I suppose we should at least be thankful that he hasn’t done anything bad or embarrassing.

I’m expecting the Budget to be all about throwing money at as many people and organizations as possible to keep them quiet, then taking it back in increased indirect taxes and charges for services. More complexity to keep accountants, lawyers and public servants in their jobs. There will be no vision, no grand plan, no hope of any real change And certainly nothing significant for disabled people or their carers.  We’re left outside alone.

The problem in Ireland for many people isn’t high taxes or low welfare, it’s the high cost of living and poor services. Money cannot buy the services my children need for example, because they don’t exist!

Respite for B is a good example. As a family in crisis we were given a Case Manager, and one of the items on the agenda was respite. She’s very lucky now to have a personal assistant who brings her on an outing every second Sunday, and it’s been suggested that the respite box has now been ticked and it’s likely that there will be no overnight respite because it is simply not available for adults with her high care needs. Lack of real respite means I haven’t slept properly for years, can’t go away on my own, can’t go to family weddings, comfort sick relatives in person, or support friends in need. At the moment I can’t even go out in the evening because of the problems affecting my youngest. And that’s just one of the many many problems that seem insoluble. Even my eldest daughter is affected, I need her help when she is at home, and she worries about the future and what demands will be placed on her.

You see the State has very little interest in families like mine unless a crisis happens, and then they wring their hands and offer just enough to try and stop things getting worse. We’re just considered dead weight. Outside society, outside the economy. Not of interest. Especially not of interest to Ministers of Finance who are only interested in balancing the books and pleasing their own supporters.

 

 

If it works for dead saints, why not for me?

I can remember the years when my pillow really did smile at me. My bedroom was a cool, calm and comfy place. Going to bed meant climbing in, curling up and dropping off. Of course nights with the children usually meant that I was up and down like a Jack in the Box, but I sank into sleep every time my head hit the pillow.

Insomnia is a rare visitor here, like a wasp on a winter’s day. Even during the worst of the menopausal years I mostly slept, but not the recommended eight hours of sleep. It’s partly my own fault. After I left home, there was so much to do and see, so many people to meet, so much to experience and enjoy, that sleep just seemed like a waste of precious time. At College I would be up at 8am studying or swimming, in lectures at 9, manning the Rag Office at lunchtime, working in a bar in the evening, then on to a club followed by curry and home to bed at 4. Then I’d get up at 8 and do it all again…

I *may* have slowed down a bit as I’ve got older. But my children’s night time needs resulted in constant interruptions over the past 25 years anyway. Things were improving though, until this year. The crisis affecting my youngest has had some unpleasant consequences for me (as well as for him obviously, but I don’t write about him on here) and today is the anniversary of when it all began to go wrong. At first I thought the problem would be solved in a few weeks, then by the New Year, but a disastrous Christmas sent everything spiralling downwards, and I now feel trapped and traumatised in a very difficult situation with no good options, and nothing seems to be working.

I’ve been finding it hard to talk, to eat, to function, and also to sleep. The novelty of sleeping in the kitchen has long since worn off, though moving out of my lovely bedroom to sleep downstairs has worked out well for my disabled daughter. As for me, I now know every peculiar sound that fridges make in the middle of the night! And I’m also too accessible, as my sleeping corner is on the way to the shower room. This now means regular night time disturbances.

With these on top of all the other stressors, I ended up with night terrors so bad I would often lie awake from 2am, barely fit to cope the next day. Finally I went to my GP for help in August, and reluctantly went back on meds. A sticking plaster over a wound the system seems powerless to heal.

Something, possibly the bed, also led to trapped nerves in my neck and shoulder. As part of the solution I was told to stop curling up, and to sleep unprotected on my back. Ugh. I feel like a dead saint in a tomb. But if it works for them, I guess I’ll have to make it work for me.

And yes the meds plus the Calm app mean I am now sleeping a little bit better. But this can’t go on. Something has to change. After all, I’m not a saint, and I’m not dead either.

 

 

A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018

 

A Rant about Carers Week #RealCarersWeek

Many people say that becoming a carer has made them a better person: I’m sure that can be true, as I saw it within my own extended family.

But I don’t think it’s made me a better person. Instead it’s highlighted my flaws: my lack of patience and tolerance, my self centredness, my incompetence in the face of overwhelming domestic duties and repetitive paperwork. Sometimes I strive to overcome these failings. At other times I rage against the unfairness of it all. I rage at being forced to live a confined life of fear and anxiety. My skills getting rusty, my brain less sharp, my mental health deteriorating.

Sure, I do my best. I do all that self care stuff: I exercise, as I’m sure you’ve noticed! I do social media – often the only opportunity I have to use my communication skills, and writing a successful blog post – or even just a popular tweet – gives me a boost that I badly need. I practice being grateful, I make myself do things that are challenging. I keep going. But it’s not always enough.

It’s not just me either.

There was a Carers Week competition to win a break at a luxury hotel in rural Ireland. Wonderful, you might say. Well deserved (especially if my friend @autieland wins, and I hope she does because she really deserves it as you can read here) but it also rubbed salt into the wounds of those of us who cannot get away from our caring duties, because those we care for have no respite. And even those families that have respite, may not be able to get it when they want or need it.

You see it’s different for everyone: some carers manage to lead relatively normal lives – and I used to be one of them – holding down jobs, perhaps enjoying holidays, a busy social life. Even then they may be facing challenges they don’t talk about. But many of the family carers I know live lives so difficult that the rest of us sometimes wonder how they keep going at all (no choice is often the answer to that question), perhaps due to the number of disabled dependents they care for or the severity of their difficulties; perhaps due to totally inadequate housing, no support, poor health, chronic pain, being housebound for months or years at a time, lack of money, lack of interest, feeling ignored, unappreciated and left behind by the rest of the world. It’s a recipe for despair.

The manicures and other little treats being offered to carers are thoughtful attempts to mark Carers Week, and undoubtedly appreciated by many. But those carers stuck deep in the trenches may not be able to leave their duties to enjoy a little pampering, or they may feel under so much pressure that doing something for themselves becomes just another item on the ‘to do’ list. And a set of pretty painted nails would not last long with the amount of hand washing that many of us have to do each day for hygiene reasons. It’s just not worth it.

There are no easy answers: my disabled daughter has been given a ticket to see Taylor Swift on Saturday, with support and some friends. A great break for me, you might think. Not quite. You see I won’t really be able to relax, as I will be dropping and collecting her, I need to be on standby in case she wants to come home early, and when I do bring her home there is a long bedtime routine that includes hoisting her onto the toilet and her night time stretching exercises that help her to sleep. We are both going to be exhausted! But we’re going to give it a try anyway. Oh and I forgot to mention I will still have one person to care for while she’s out….

What can I do except keep trying to raise awareness? This week I’m joining @Carer49 and tweeting using the hashtag #RealCarersWeek to highlight issues and possible solutions. I hope someone will read them, someone who can take action to improve our lives and the lives of our dependents. It’s hard to hope though, when UK Councils chose Carer’s Week to announce further cuts to vital care services. Does anyone else think that old, sick and disabled people and their carers are actually held in contempt by many people in today’s world? Yes? Not just me then.

As you can see, becoming a carer has not made me a better person, but I feel better after that little rant, and I promise my normal cheerful service will be resumed soon..

The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.

 

Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.

 

 

 

Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

Head over to Lakes Single Mum for more reasons to be cheerful.