Still falling - it's a long way down

We're at last getting to grips with sons chest infection. IVI (Intra venous infusion - a drip) antibiotics combined with steroids seem to be making some headway but recovery is very slow.

Meanwhile, nurses are dropping like flies. Some seem to have same flu like infection though not as bad obviously. Net result has been no cover so he's at home with us, sometimes with, sometimes without nurses. All very unpredictable and wearing. Needs a lot of care when like this - physio, suction, checking oxygen levels etc. on top of normal stuff. Oxygen saturations have been quite poor so using oxygen concentrator most of time at present. Sleeping a lot just now as seems exhausted with coughing, but at least it isn't a nasty green colour now.

A nurse we thought was still ill has recovered so we're going to get a decent sleep tonight (as long as he doesn't throw another 5a.m. 'wobbler'.) Everything else on hold.

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.

Falling over in slow motion

Difficult time to post - will probably do something more when time and problems permit.

Wife largely, though not completely, recovered from hospital.  Son has developed serious chest infection we're only slowly getting on top of (hope not to be a repeat of Jan/Feb/Mar) - one result was a 5a.m. rush over to help staff on duty.  Same infection that gave him chest infection has given care staff 'flu' symptoms so major staffing gaps.  Fall back plan for covering staff sickness has fallen back and fallen over.  Carers not allowed to be ill - we have same infection but don't get time off, so now nursing sick son at home whilst ill ourselves and one of us still recuperating from major hospital episode.

Life's a bitch sometimes.

Normal - ish service will be resumed

Apologies for my absence. My wife had a sudden hospital admission, so along with shopping, meetings and other non essential activities (unlike caring, cooking, visiting hospital and housework), the blog had to stop for a while. Normal service probably never existed, so can't really expect its return any time soon. Anyway, she's now recuperating at home and supervising care services and domestic activities - it's at times like this I start to realise how little I actually contribute.

Meanwhile, our sons services sort of carry on. A nurse with one service calls in sick, so the other service picks up slack because the contingency plans are still not working. He missed a bit of his activity that day but got an unexpected lie in instead, otherwise he seems to have sailed through things reasonably - including a visit to his mum in hospital, which he slept through 80% of. Some care quality issues with an agency nurse (some are great, some not so great.)

This afternoon it looks like he's developing another chest infection, so back on the antibiotics. He's done really well lately, with a four/five week break since he last needed them. It may well explain why he's been having a few more longer fits at night that we were starting to get concerned about. The discomfort would have been enough to trigger them.

Anyway, back on the treadmill - need to find out why newly appointed nurses still not coming on stream - probably CRB checks.

A bit edgy

Had a short, sharp reminder of how quickly things can change over the weekend.

Our son had had a pretty good day, a bit sleepy, but it was weekend and he is 27, so a bit of a lie in shouldn't be too worrying. Took him to a local event and had a pleasant chill out in the garden afterwards, and then some TV in the evening. Then late that evening, he had a major fit, not unusual, he went quite blue with it, again he does this sometimes, but we think he must have aspirated (breathed in some of his secretions) as his oxygen levels dropped through the floor. We spent the rest of the evening trying to get them back up and stabilised - we have an oxygen concentrator etc. We think he'd aspirated and the secretions were 'blocking off' a portion of his lung. He did settle to a reasonable level eventually, but it took some time as he didn't seem to want to cough properly. Kept him on oxygen overnight and he's been fine since.

Had to fend off all phone calls etc. so some people probably think we're a bit rude. It's times like this that remind us how fragile things can be.

The devil in the detail

Ordinary problems can so easily become major issues if you've got 'complex care needs'.

We've lived in dread of the hay fever season for many years. If our son was 'ordinary' it would be a significant inconvenience but as he over secretes with the pollen, he can't just swallow it or blow his nose like you or I. There's a 50/50 chance the fluid will go down his airway - and that's a real problem. He starts to choke (that's one reason why we need to suction him, and contributes substantially to his recurrent chest infections.) and that distresses him, so he has a fit (and we need to deal with that if he has too many or they last too long.) so simple hay fever gets to be major intervention.

He's developed a blocked sweat gland under his armpit. A bit painful if not controlled but no big deal. Unless of course you can't tell anyone it hurts until it becomes an obvious lump, and you start fitting with the pain. So we treat it with antibiotics and panadol. Now if it gets established and too recurrent, an ordinary person would just have surgery to remove the pocket, but because of his fits and his damaged lungs, he's a poor anaesthetic risk. Any surgery then becomes a major life risk. So that's not an option we want to think about. One day we may have to, but for now the antibiotics and pain killers work.

These are just details in his condition, but the devil really is in the detail here. And there's some little devil going to get a pitchfork right where it hurts if I finish up in the furnace.

We are not alone

The lady who went on hunger strike (Mrs Cavill-Burch) over lack of care and support has my sympathy. I can hear the public now - 'this can't be happening in our society in this day and age' - but it can, and it does. It did to us for 19 years. We have a service now, but like her spent many years suffering acute sleep deprivation. At one point a District Nurse confiscated our car keys as she felt we were too tired to drive safely - but it didn't get us a service. We didn't try hunger strikes - just didn't think of it - maybe we should have. We got our service after much shouting, embarrassing the local Authority and NHS in public and setting it up ourselves with the help of two local charitable providers. I suspect there's little help we can offer Mrs Cavill-Burch other than to say the publicity, though painful, may be enough to start the services off, but it won't just happen. If we can help, get in touch. For news report see BBC at http://news.bbc.co.uk/1/hi/england/cambridgeshire/10547319.stm

This subject is being raised in Parliament on 13th July at the All Party Group on Learning Disability meeting. The Raising Our Sights report is being presented there and for once spells out how big and bad this issue is. There's a copy on the department of Healths own website at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf

We are not alone, we're isolated. There are a lot of us out there but we're trapped in our homes doing the care, and are invisible. And the services (NHS and Social Services) find us too difficult to deal with because it is hard. So they ignore us, in the hope we'll keep quiet. And on top of this - the cuts are coming.

Not Valuing People

Just a heads up on a more than strong rumour.

If you have any involvement in the world of learning disabilities, you'll know that the Valuing People organisation was set up to oversee and ensure people with learning disabilities got good quality services and to promote best practice. It was the one 'official' champion that carers and people with learning disabilities could quote in the face of poor or reducing services. Their website has carried the 'this is under review' government cuts health warning for a while, but I understand that yesterday, staff at all levels, received redundancy notices.

The greedy bankers got us into this mess, it's going to be the suffering of people with disabilities that are forced to dig us out.

Seeing the light

It's a strange thing letting go. We've been building up my sons care package gradually for about 8 years. Prior to that we did almost all his care 24/7 ourselves (not necessarily out of choice but because he was felt to be too difficult to cope with by the places we got referred to.) Before that all we really got was a few days a year respite from the local childrens hospice. So we went into partnership with a couple of charitable provider organisations and started the 'shared care' with one or two days a week. They were good and we gradually built it up until this year he's only with us one or two days a week. It's been long, hard and involved a fair bit of friction at times (especially with the PCT and Social Services) now we trust them and I think they trust us.

The real payoff here is that we can risk dying now. Getting ill hadn't really been an option before. And I don't want my daughter to feel she has to take over if anything happens to us - the damage it's done already is more than enough. (S - if you read this, we know you could do it, we just don't want you to have to. Your life is just as important as his.)

We've recently made the transition to not doing the nights shifts - even when he's at home, one of the nursing team now take on his night care and we camp out in the spare bedroom. This has actually made much more of a difference than we expected and changed things in what for us was a fairly surprising way.

Up to recently we had him at home with us for a continuous row of shifts for about two days and nights at a time (plus of course any 'contingency'). What this meant was that, even alternating the waking watch night, we were so tired that we didn't have the energy to do much with him during the day apart from his care, and we spent all the time in between just catching up on sleep until his next visit.

Now, we're awake and alert when he's with us and spending the time in between not just recovering - and everybody's quality of life is better. We have the energy to organise and do things with him we never considered before, so his time at home is much more interesting. We've found ourselves taking him out with the nurses in between times as well to do fun things - and it's good.

We're even managing to take a few days out to visit my daughter. I'm finding it difficult to remember what it felt like even a few years ago when we were locked into full time continuous care and staying awake was an effort. The light at the end of the tunnel looks good - I just hope the spending cuts don't turn it into another oncoming train.