I guess most 24/7 Carers have to find coping strategies for the ‘WC’ aspects of care. Do they also have to get used to being woken at 5am ? Sorry – but I really REALLY need to get this one out of my head……..
The main Precipitating Factor for DJ requiring full time care was developing acute urinary retention. We / I had suspected at least an element of chronic retention for a while, but as DJ wouldn’t talk about it, and the GP wouldn’t address it, we were stumped until his ‘Lunch-provider-carers’ couldn’t get in one day, TH was called home (again) from work, and found DJ having fallen and very torn and bloody. His skin is just so fragile, he tears easily. So TH called me (working fulltime then) and took DJ in to A & E at our local hospital and I left the ward I was working on and met them there. This was mid-August 2006.
So it began. Life was Never The Same Again.
DJ was admitted to hospital that day, and it took a month to get him out. We now know that This Is What Happens when he ends up in hospital. Because of his dementia he cannot understand or relate to what is happening, who the staff are or what is required. He gets upset. He won’t stay in bed. They give him sedation and put cot sides on the bed. He’s still upset, now feels retrained and doesn’t like it. He climbs over the cot sides, falls further onto the hard floor and sustains injury. To keep him in bed they give him more sedation. He now feels very ‘odd’ and sore, as well as restrained, so gets more upset. They give more sedation. He feels more peculiar. Gets more upset. Certainly won’t stay in bed. Falls over……… gets given even more sedation until he finally konks out…….. Episodes when the sedation level is decreasing precipitate him trying to get out of bed to get away and escape……. He gets given more sedation. Then they won’t get him up to walk ….. (“well, he’s really not able …… he wouldn’t be safe”)…….. so then their assessment is that he CAN’T walk……. so couldn’t possibly be managed at home……..
You get the picture.
And The System is both holding the paintbrush and painting the picture, and DJ and his family are effectively now ‘bit players’ being cast into An Alternative Universe.
But IS that the Real Situation ? Is The System’s Perceived Picture the only option ? Is The System’s Answer actually The Only Answer ?
Having worked within the ever-changing system for over 20 years, ChickPea wasn’t going to get steamrollered.
So, to get him home, ChickPea (PEA ? !!) found it necessary to Develop Skills to deal with the waterworks (‘cos DJ would not and will not tolerate a permanent tube being left in place to deal with the necessary). And The System was a bit surprised, both then, and now, that we were willing – and able – and could do it.
That bit I can still cope with.
The Bowel Bit is another matter altogether. We all know about ‘Bowel Habit’ from our own experiences. This title ‘Habit’ suggests a certain predictability. HA !
Over these many months we’ve tried most professionals for advice – District Nurse, GP, Gastro-Enterology Nurse Specialist …….. Their ( mostly pharmacological ) advice had the effect of making the Constipation-Diahorroea Rollercoaster run even faster and more unpredictably.
We stuck with each new bit of advice thru thick and thin….. and, thankfully, eventually gained access to a regular supply of ghastly and uncomfortable ‘pant pads’ which kind of assisted the basic practicalities of coping (if and when DJ would keep them on ……). We changed his clothes, changed his bed in the middle of the night, changed it again, showered him at 3am as the only option…..(too much detail ? – sorry )….. maybe you know how it goes – tho I hope not.
Sooner Or Later we would achieve a modicum of success and reach a week or so of fairly normal…… Then All To Pot again……. or Not In Pot – hence the difficulties……..
This has been another of those ‘Have Confidence In Your Own Instincts’ aspects of care. I guess this is also One Of Those Things that new parents discover ……. Not having achieved parenthood, we had to discover it new. Parenthood perhaps has the hope of progress and improvement………
And so eventually, caring for Someone With Dementia, you accept that this is just The Way It Is….. and presumably Will Be. Sometimes ok, and sometimes NOT. And probably Going To Get Worse.
Meantime…… I Give Thanks Continually for latex gloves, reams of bogroll, moist wipes and even for horrid pant pads………..
The main Precipitating Factor for DJ requiring full time care was developing acute urinary retention. We / I had suspected at least an element of chronic retention for a while, but as DJ wouldn’t talk about it, and the GP wouldn’t address it, we were stumped until his ‘Lunch-provider-carers’ couldn’t get in one day, TH was called home (again) from work, and found DJ having fallen and very torn and bloody. His skin is just so fragile, he tears easily. So TH called me (working fulltime then) and took DJ in to A & E at our local hospital and I left the ward I was working on and met them there. This was mid-August 2006.
So it began. Life was Never The Same Again.
DJ was admitted to hospital that day, and it took a month to get him out. We now know that This Is What Happens when he ends up in hospital. Because of his dementia he cannot understand or relate to what is happening, who the staff are or what is required. He gets upset. He won’t stay in bed. They give him sedation and put cot sides on the bed. He’s still upset, now feels retrained and doesn’t like it. He climbs over the cot sides, falls further onto the hard floor and sustains injury. To keep him in bed they give him more sedation. He now feels very ‘odd’ and sore, as well as restrained, so gets more upset. They give more sedation. He feels more peculiar. Gets more upset. Certainly won’t stay in bed. Falls over……… gets given even more sedation until he finally konks out…….. Episodes when the sedation level is decreasing precipitate him trying to get out of bed to get away and escape……. He gets given more sedation. Then they won’t get him up to walk ….. (“well, he’s really not able …… he wouldn’t be safe”)…….. so then their assessment is that he CAN’T walk……. so couldn’t possibly be managed at home……..
You get the picture.
And The System is both holding the paintbrush and painting the picture, and DJ and his family are effectively now ‘bit players’ being cast into An Alternative Universe.
But IS that the Real Situation ? Is The System’s Perceived Picture the only option ? Is The System’s Answer actually The Only Answer ?
Having worked within the ever-changing system for over 20 years, ChickPea wasn’t going to get steamrollered.
So, to get him home, ChickPea (PEA ? !!) found it necessary to Develop Skills to deal with the waterworks (‘cos DJ would not and will not tolerate a permanent tube being left in place to deal with the necessary). And The System was a bit surprised, both then, and now, that we were willing – and able – and could do it.
That bit I can still cope with.
The Bowel Bit is another matter altogether. We all know about ‘Bowel Habit’ from our own experiences. This title ‘Habit’ suggests a certain predictability. HA !
Over these many months we’ve tried most professionals for advice – District Nurse, GP, Gastro-Enterology Nurse Specialist …….. Their ( mostly pharmacological ) advice had the effect of making the Constipation-Diahorroea Rollercoaster run even faster and more unpredictably.
We stuck with each new bit of advice thru thick and thin….. and, thankfully, eventually gained access to a regular supply of ghastly and uncomfortable ‘pant pads’ which kind of assisted the basic practicalities of coping (if and when DJ would keep them on ……). We changed his clothes, changed his bed in the middle of the night, changed it again, showered him at 3am as the only option…..(too much detail ? – sorry )….. maybe you know how it goes – tho I hope not.
Sooner Or Later we would achieve a modicum of success and reach a week or so of fairly normal…… Then All To Pot again……. or Not In Pot – hence the difficulties……..
This has been another of those ‘Have Confidence In Your Own Instincts’ aspects of care. I guess this is also One Of Those Things that new parents discover ……. Not having achieved parenthood, we had to discover it new. Parenthood perhaps has the hope of progress and improvement………
And so eventually, caring for Someone With Dementia, you accept that this is just The Way It Is….. and presumably Will Be. Sometimes ok, and sometimes NOT. And probably Going To Get Worse.
Meantime…… I Give Thanks Continually for latex gloves, reams of bogroll, moist wipes and even for horrid pant pads………..
( Afterthought : And I wonder why I wonder why no-one leaves any comments on this blog…….. ! )
No comments:
Post a Comment