On Monday hubby and I went to London to attend a meeting about BIL. Beforehand, we visited Kenwood House, which was really rather lovely in the autumn sunshine. We arrived at the hospital just before 2pm; I hadn't seen my BIL since late August and if I'm honest, it was a shock. He looked really awful, well I guess that's really to be expected: he has only recently been moved out from the Intensive Care Unit (ICU) to a normal ward.
He was less communicative than usual and it was difficult to maintain any level of eye contact. The hour crawled by. At one point I picked up a copy of The Radio Times and read interesting (well, I thought so) snippets out loud, but BIL seemed on another planet.
The case conference or hospital pre-release meeting then took place. The attendees were, as follows: the Doctor in charge of the case: who was a respiratory expert; the two discharge Nurses; BIL's Social Worker; the Residential Care Home Manager, plus hubby and me. Phew! It was clear that BIL's health has deteriorated over the past fortnight and much has to be done to rectify this, so it's a case of engaging the community physiotherapy teams, the Speech and Language Team and various other support services.
At least it's not down to hubby alone any longer.
Friday 30 October 2015
Friday 16 October 2015
#6: When Disaster Strikes
This Monday was like any other really - pottering around doing housework, however mid-morning my husband's old mobile phone rang and it was one of his brother's care workers. My BIL had been taken to hospital after suffering from breathing problems and was currently waiting in A&E. We had too many family commitments to go up there that day, but on Tuesday hubby went up there and poor old BIL was hooked up to all sorts of respiratory masks and tubes - it was pretty horrific. He has pneumonia and the scoliosis of his spine reduces his lung capacity.
Wednesday went by in a flurry of telephone calls and pleas from the carers to visit BIL, but hubby and BIL's relationship isn't the greatest and as he's scared of hubby, his blood pressure shot up as a result. It's a lose-lose situation.
Yesterday hubby was undertaking one of his regular telephone calls to the hospital when he was informed that BIL had been placed into the Intensive Care Unit (ICU) because he couldn't breathe. It was pretty serious. Since then things have been very strained indeed at home. I am being as supportive as I can.
Today is Friday, hubby visited him in the ICU, but he's been sedated and is hooked up to a series of wires and machines. Flipping heck.
Wednesday went by in a flurry of telephone calls and pleas from the carers to visit BIL, but hubby and BIL's relationship isn't the greatest and as he's scared of hubby, his blood pressure shot up as a result. It's a lose-lose situation.
Yesterday hubby was undertaking one of his regular telephone calls to the hospital when he was informed that BIL had been placed into the Intensive Care Unit (ICU) because he couldn't breathe. It was pretty serious. Since then things have been very strained indeed at home. I am being as supportive as I can.
Today is Friday, hubby visited him in the ICU, but he's been sedated and is hooked up to a series of wires and machines. Flipping heck.
Sunday 4 October 2015
#5: The Aftermath of Placing Your Relatives In Care
Apologies that I haven't written for ages, it's mainly because of time constraint and the need to maintain my seventeen other blogs. Well, let's have a quick update - my MIL and BIL are both safely in care - the former in an council-run old peoples' home and the latter in a supported living collective. My husband feels guilty, as many people would I've no doubt. As a woman with Asperger Syndrome sometimes I don't view the world in the same way.
I feel the need to write about my experience of being a secondary carer in much greater detail than this. I think that I may.
I feel the need to write about my experience of being a secondary carer in much greater detail than this. I think that I may.
Saturday 15 February 2014
#4: When It Just Gets Too Much
At 17:00 GMT today my friend Archie* telephoned to say that his long-term girlfriend Fiona* had recently committed suicide and that he is devastated. What can you say in these situation? Well I guess that I can show more empathy than the average Joe because I have experience of the two main factors which led to her suicide: i.e. my brother killed himself in the mid 1990s and I was friends with Archie then, so he remembers my regular heavy drinking and morose nature. The second factor was having to deal, on a regular basis, with a relative with Alzheimer's, which as you can tell from the other entries in this blog, becomes very stressful indeed.
Alzheimer's appears, in the case of my Mother-in-Law, to turn your basic personality into an exaggerated version of itself - i.e. not to mince words, my MIL has the educational intelligence of an eight to nine year old (inclusive of the nasty, sneaky nature...) and is allowed to grind everybody's lives around her. Great. I think the situation is made much worse because of the huge shortage of care home places now which has a huge impact on the relatives' lives. Oh for goodness sake; life's for living, not for simply scraping by.
*Not real name.
Alzheimer's appears, in the case of my Mother-in-Law, to turn your basic personality into an exaggerated version of itself - i.e. not to mince words, my MIL has the educational intelligence of an eight to nine year old (inclusive of the nasty, sneaky nature...) and is allowed to grind everybody's lives around her. Great. I think the situation is made much worse because of the huge shortage of care home places now which has a huge impact on the relatives' lives. Oh for goodness sake; life's for living, not for simply scraping by.
*Not real name.
Saturday 30 November 2013
#3: Achieving Status Quo
I don't update this blog enough, but to be fair, very few people ever read it - so there. Anyway, it's nearing Christmas 2013 and things in the care sphere seem to be settling down rather nicely. A live-in carer has been in place for nearly a year and apart from a few glitches, all is progressing well. Despite my MIL's huge reluctance, my BIL is taken out and about by carers, although he had a fit a few months ago and still has to undergo a brain scan to determine whether he has epilepsy (personally I don't think he has but as I haven't signed the Hippocratic Oath, I doubt that my opinion holds much water...) He's also had the assistance of an advocate - for those not in the know, they're independent of both family and social services and seeks to determine what the the disabled person really wants out of life. Sadly this is pretty difficult as my BIL hasn't a flipping clue and seems to list such activities as disco dancing, playing football and going to Butlin's as key achievables. I really don't think so - the last time I went to Butlin's it was bloody awful and full of drunks shouting until 2am.
My MIL hated the intervention of the last advocate and made such a huge fuss about his involvement that my BIL felt hemmed in. The lowlight of this process was when the advocate took my BIL out to a local coffee shop and stated, rather innocently that 'Mum was a little grumpy today' which my BIL fed back causing my MIL to 'go spare' stating that 'everyone in the town must have heard that'. Really? Isn't vascular dementia awful?
My MIL hated the intervention of the last advocate and made such a huge fuss about his involvement that my BIL felt hemmed in. The lowlight of this process was when the advocate took my BIL out to a local coffee shop and stated, rather innocently that 'Mum was a little grumpy today' which my BIL fed back causing my MIL to 'go spare' stating that 'everyone in the town must have heard that'. Really? Isn't vascular dementia awful?
Wednesday 18 September 2013
#2: Life Goes On
After they'd both been released from hospital they returned to their council flat and a live-in carer was duly installed. Apparently this is cheaper than housing them in council-funded homes. Of course, this meant that the assistance provided (at a huge financial cost to us) by the neighbours ceased which was beneficial in so many ways - the main one being that they were no longer able to 'seasonally re-adjust' the various benefits they collected from the post office and best of all, I no longer had to suffer endless monotonous phone calls about what was going on from one of them. Hurrah.
Since then, my poor husband has had to co-ordinate this nightmare on an almost daily basis; he used to look young for his age but he's visibly wilted during the past year. He visits once a week or fortnight as necessary but in the meantime he deals with their every problem or whim via phone. Here's a few examples of what he's had to put up with during the past few months:
Since then, my poor husband has had to co-ordinate this nightmare on an almost daily basis; he used to look young for his age but he's visibly wilted during the past year. He visits once a week or fortnight as necessary but in the meantime he deals with their every problem or whim via phone. Here's a few examples of what he's had to put up with during the past few months:
- Sorting out things as mundane as having my BIL's hair cut
- Contacting the council to complain about the noise a neighbouring flat is emitting during to extensive internal refurbishment
- Buying new clothes for my MIL which she always declares as 'crap' - including the purchase 'brassieres' although she's not sure which size she is
- Buying new clothes for my BIL (from BHS btw!) which my MIL then won't let him wear....
- Contacting the white goods repair team after my BIL left the freezer door wide open for ages
#1: Background
Yes, yet another blog, but writing is cathartic to me, so bear with it.
OK, so here's the score - I am a woman in her late 30s (at time of writing), my husband's a fair whack older than me. We're the parents of a six-year-old autistic boy and to cap it all, my husband has a mentally and physically disabled brother who's in his 50s plus an increasingly senile and housebound mother, aged in her late 80s. My mother-in-law or MIL thereafter, has always looked after my brother-in-law (BIL), but it's not good - my father-in-law (FIL) was a bit of a drunkard and the pair of them did bugger all to improve my BIL's life, provide any useful skills or education post-18, so he's basically useless, sorry but that's the God honest truth - my son has more savvy about him than the former has. I don't believe that he can even wipe his own arse or bath himself; no he can't.
This situation jogged along for a good many years through illnesses (Bell's Palsy for him) and various other stages of semi-neglect? You're shocked aren't you, but there wasn't much we could do about it, the local Social Services don't really step in unless it's a life and death case and short of actually banging one's head against the doors of the council offices, it's fairly pointless. She broke her wrist in 2005ish and we stepped in then and arranged care and Meals on Wheels which she described and I quote, as 'utter rubbish'. Nice.
In August 2012 I received a phone call at home, one of MIL's distant nieces twice-removed or whatever the equivalent is, reported that she'd slipped on some orange peel and was conveyed to hospital. It turned out that she had a broken femur and as a result developed MRSA and stayed in hospital for a great many weeks. Conversely we had to find care for my BIL via a series of Heath Robinsonesque rota of carers plus assistance from a triumvirate of rapacious neighbours. This rumbled on for a few weeks until one of the carers took my physically disabled BIL for one walk too many and the latter developed Deep Vein Thrombosis and as a result ended up in the same hospital (albeit located on different floors) a my MIL.
OK, so here's the score - I am a woman in her late 30s (at time of writing), my husband's a fair whack older than me. We're the parents of a six-year-old autistic boy and to cap it all, my husband has a mentally and physically disabled brother who's in his 50s plus an increasingly senile and housebound mother, aged in her late 80s. My mother-in-law or MIL thereafter, has always looked after my brother-in-law (BIL), but it's not good - my father-in-law (FIL) was a bit of a drunkard and the pair of them did bugger all to improve my BIL's life, provide any useful skills or education post-18, so he's basically useless, sorry but that's the God honest truth - my son has more savvy about him than the former has. I don't believe that he can even wipe his own arse or bath himself; no he can't.
This situation jogged along for a good many years through illnesses (Bell's Palsy for him) and various other stages of semi-neglect? You're shocked aren't you, but there wasn't much we could do about it, the local Social Services don't really step in unless it's a life and death case and short of actually banging one's head against the doors of the council offices, it's fairly pointless. She broke her wrist in 2005ish and we stepped in then and arranged care and Meals on Wheels which she described and I quote, as 'utter rubbish'. Nice.
In August 2012 I received a phone call at home, one of MIL's distant nieces twice-removed or whatever the equivalent is, reported that she'd slipped on some orange peel and was conveyed to hospital. It turned out that she had a broken femur and as a result developed MRSA and stayed in hospital for a great many weeks. Conversely we had to find care for my BIL via a series of Heath Robinsonesque rota of carers plus assistance from a triumvirate of rapacious neighbours. This rumbled on for a few weeks until one of the carers took my physically disabled BIL for one walk too many and the latter developed Deep Vein Thrombosis and as a result ended up in the same hospital (albeit located on different floors) a my MIL.
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