View Full Version : New respite concerns
I have been looking into getting some respite care for a while now as my mother has severe dementia and it's been affecting me quite significantly and I still really want to pursue it possibly after Christmas when the second lockdown is finally done and dusted, but I keep having anxiety dreams about being disappointed with the place and it being staffed by poorly trained 'chancers'.
Some of my fellow clients at the day centre I attend currently once a week stay there sometimes with no reported issues, but I just can't help imagining all kinds of worst-case scenarios and being powerless to address them, especially if power-crazy chancers with their own hidden agendas might be working there, which happened at the other two respite units I attended when I was younger back in the 90s.
Same also with the residential school I attended back in the late 80s.
I completely understand the trauma you are experiencing from your Mum's dementia. My daughter is having severe MH issues and trauma as a result of my son's recent breakdown and hospitalisation.
I know you've had some really bad experiences in the past but you mustn't let this colour what is available now? Can you check the CQC report online of the respite unit you are considering? You would still be fully in control of any decisions to be made re respite care and would be free to leave at any time. I presume you would need to put in a funding request and if so this would all take time.
Talk to people who use the unit and see what they think of it? You need some time away from home life which must be incredibly stressful for anyone, let alone for someone on the spectrum. I've seen for myself how devastating trauma can be for my own adult children so would encourage you to find somewhere where you would feel safe in order to get some respite, however brief.
I completely understand the trauma you are experiencing from your Mum's dementia. My daughter is having severe MH issues and trauma as a result of my son's recent breakdown and hospitalisation.
I know you've had some really bad experiences in the past but you mustn't let this colour what is available now? Can you check the CQC report online of the respite unit you are considering? You would still be fully in control of any decisions to be made re respite care and would be free to leave at any time. I presume you would need to put in a funding request and if so this would all take time.
Talk to people who use the unit and see what they think of it? You need some time away from home life which must be incredibly stressful for anyone, let alone for someone on the spectrum. I've seen for myself how devastating trauma can be for my own adult children so would encourage you to find somewhere where you would feel safe in order to get some respite, however brief.
Thanks for your advice as always Pulisa.
I know I'm not being forced into it and like I said, I really want to pursue it but with past experiences at such places, typically involving staff members who rollicked me over things like using the wrong toilet that was actually intended for staff use only, but never informed in advance, waiting in the office for my parents to pick me up to take me back home at the end of my stay, to be screamed at by the very same arsy, power-crazy staff member that the office was out of bounds to all clients, again as none of the other staff members informed me of that, and during the massive argy-bargy I was having with that battleaxe staff member on the latter occasion (and also bringing up the staff toilet incident on an earlier stay) said 'Why don't you put signs up and/or put locks on the doors of the office, staff toilet and other 'out of bounds' rooms/areas so us clients cannot enter' and she arrogantly responded with 'Well we shouldn't have to do that' and 'How dare you tell us how to run this place'!
The kind of person that one is incapable of reasoning with and in blatant denial about the poor practices of both herself and other staff members, and of course, playing the blame game on us clients who were unwittingly making mistakes that we were previously unaware of, due to poxy communication breakdowns between staff in general coupled with inept, power-crazy jobsworths like her, with a rabid agenda of controlling vulnerable people in her care.
Sorry for the long rant and essay on my past bad experiences in such places, but I want to feel comfortable at the new place and not intimidated by certain staff members who aren't fit to be working in such places, but still do because they're entitled to a job after all!?
It might be difficult for you to feel comfortable anywhere if you are anticipating bad treatment though? Have you ever had counselling to talk about what happened to you in the past?
It might be difficult for you to feel comfortable anywhere if you are anticipating bad treatment though? Have you ever had counselling to talk about what happened to you in the past?
Yes I have, and still am ATM, albeit over the Internet due to current Covid restrictions.
The trouble is, no matter how much counselling/reassurance I receive, it won't change the ways and motives of unscrupulous chancers with poor anger management and communication issues who work in the care profession, and the usual excuse that they have every right to a job.
At the school I attended (after the residential one) during roughly the same era as the first respite unit that I mentioned in my previous post, there was a teacher who was perpetually angry and incapable of reasoning with pupils, who hastily accused me of bunking out of class when I was doing a favour for my main form teacher, and acting like a female Sergeant Major!
Essentially a female version of Mr Bronson from Grange Hill!
May I be honest, Lencoboy? I'm shocked and upset by the way you've been treated, but at the same time, I find your misanthropy very difficult to deal with.
Is there a chance this may be affecting your dealings with others? I promise, there are so many decent people out there if you give them a chance.
May I be honest, Lencoboy? I'm shocked and upset by the way you've been treated, but at the same time, I find your misanthropy very difficult to deal with.
Is there a chance this may be affecting your dealings with others? I promise, there are so many decent people out there if you give them a chance.
I agree there are far more decent people out there and I do try to give everyone a chance, but unfortunately there will always be at least one bad apple in pretty much every establishment, and all too often, their iffy ways often get overlooked and the managements often consider sweeping the issues under the carpet and playing them down the easiest options rather than attempting to address them properly.
Always have done, probably always will do.
Way of the world I suppose.
May I be honest, Lencoboy? I'm shocked and upset by the way you've been treated, but at the same time, I find your misanthropy very difficult to deal with
Is there a chance this may be affecting your dealings with others? I promise, there are so many decent people out there if you give them a chance.
Abuse leaves mental scars Blue.
I know, because I've lived it myself. Stepping back now because I'm not good with conflict at the moment.
I agree there are far more decent people out there and I do try to give everyone a chance, but unfortunately there will always be at least one bad apple in pretty much every establishment, and all too often, their iffy ways often get overlooked and the managements often consider sweeping the issues under the carpet and playing them down the easiest options rather than attempting to address them properly.
Always have done, probably always will do.
Way of the world I suppose.
You must feel very scarred by your experiences when younger and I know how vulnerable people are in these units and how they can be exploited and abused by unscrupulous individuals.
Could you maybe ask for a trial respite break at a particular unit and see what you think? Whatever you decide will always be a gamble but I suppose it boils down to your need to get away from home for a while versus your fear that there will be a repetition of behaviours which have so traumatised you and continue to traumatise you many years later..
Abuse leaves mental scars Blue.
Too right it does Nora.
And then I get accused of misanthropy simply for speaking my mind about injustices people with disabilities have been known to face, and still continue to face by backward-thinking individuals who still think we should be controlled and treated like little kids.
And this is people from all political and cultural angles who are selfishly obsessed with nostalgia and some mythical golden age, especially before the year 2000.
Emotions are close to the surface right now with the world seemingly going crazy. Don't fall out guys, life is way too short.
MRS STRESS ED
04-11-20, 18:52
I have been looking into getting some respite care for a while now as my mother has severe dementia and it's been affecting me quite significantly and I still really want to pursue it possibly after Christmas when the second lockdown is finally done and dusted, but I keep having anxiety dreams about being disappointed with the place and it being staffed by poorly trained 'chancers'.
Some of my fellow clients at the day centre I attend currently once a week stay there sometimes with no reported issues, but I just can't help imagining all kinds of worst-case scenarios and being powerless to address them, especially if power-crazy chancers with their own hidden agendas might be working there, which happened at the other two respite units I attended when I was younger back in the 90s.
Same also with the residential school I attended back in the late 80s.
Hi Lencoboy hope your well
So sorry to hear of your experiences and unfortunately it does happen l work with dementia patients and have done since l was 18, l have seen a lot of changes over them years and definitely for the better, if it's a good company they don't take anyone on they vet people throughly and if they don't l would avoid,
You can also do your homework online and read the home reports don't hold back ask any questions you need to address a good home will be upfront with you, don't understand people anyone hurting a person let alone a vulnerable person these people aren't carers and unfortunately it tars the good carers, l hope you find a decent home and the best of care your mum deserves take care xx
Hi Lencoboy hope your well
So sorry to hear of your experiences and unfortunately it does happen l work with dementia patients and have done since l was 18, l have seen a lot of changes over them years and definitely for the better, if it's a good company they don't take anyone on they vet people throughly and if they don't l would avoid,
You can also do your homework online and read the home reports don't hold back ask any questions you need to address a good home will be upfront with you, don't understand people anyone hurting a person let alone a vulnerable person these people aren't carers and unfortunately it tars the good carers, l hope you find a decent home and the best of care your mum deserves take care xx
Sorry to sound rude, but I think you might be confusing a short break service intended for me with possible care home accommodation for my mom, which isn't happening as yet.
Thanks for your nice words though.
I thought the same as Mrs Stress Ed to begin with and then re-read your post and realised my mistake.
Do you think your anger is mixed in with fear? Fear and uncertainty as to whether you will be able to keep yourself safe in an as yet unknown environment?
MRS STRESS ED
04-11-20, 20:19
Sorry to sound rude, but I think you might be confusing a short break service intended for me with possible care home accommodation for my mom, which isn't happening as yet.
Thanks for your nice words though.
Oh I'm sorry I have read it as your mum not you really sorry and you certainly not being rude my mistake hope everything works out for you take care xx
Pulisa l did l got mixed up my stupid anxiety brain hope your well xx
I thought the same as Mrs Stress Ed to begin with and then re-read your post and realised my mistake.
Do you think your anger is mixed in with fear? Fear and uncertainty as to whether you will be able to keep yourself safe in an as yet unknown environment?
I think it's a case of hypervigilance Pulisa, and I'm basically 'conditioned' into fearing worst-case scenarios wherever I go, due to past bad experiences at all manner of places, be they respite units, schools, day centres, hospitals, you name them.
Plus there will almost always be at least one invincible 'bad apple' working in such places.
I think there might also be elements of what one person may find painful another might consider trivial and irrational.
Human nature I suppose.
I've been thinking about this again this morning, and remembering how 'hodge-podge' the first unit I stayed at back in the early 90s was, not just with the arbitrary rules and poor communication by certain staff members (e.g, the rows over the staff toilet, office, staff smoking in the building, etc), but most notably the age mismatch of clients staying there on occasions, e.g, people like me then in early teens being mixed with say, toddlers, which did actually happen on a few stays there of mine.
I really have no idea what planet the Department of Health and Social Care at Staffs CC were on at the time, just seemed so ill-thought out to me.
I know it won't be like that at the new place of which I'm still yet to pursue (obviously pandemic permitting), as it's for adults only, but I still can't help imagining scenarios of certain arsy staff members with their own agendas working there, though I know that people smoking in such premises is now firmly a thing of the past.
Having said that, places that we may stay at on our holidays can also carry similar sources of disappointment, such as arsy, unhelpful staff members at the hotels, caravan/camping sites, etc, nuisance noises from other people staying there, passing traffic or on-site mechanical sources (e.g, dodgy plumbing/heating systems emitting water hammer and other strange sounds), toilet/shower/ bathroom/ bedroom facilities whose general conditions are below par, etc.
Earlier today while walking the dog I was wishing I was at the respite unit (in Burton) that I've been looking into attending for the best part of 2 years but has been put on the back burner several times, obviously due to the pandemic and its attendant restrictions.
I also recall around late summer 2020 there were discussions between my dad and social workers about the possibility of my mom having respite care herself (at a place for elderly persons about two thirds of a mile from where we live), but my dad decided against it because he didn't want my mom to get upset and think she had been pushed out, even though it would only have been for a weekend or so.
I don't think my dad would be particularly happy about me attending the respite unit now, especially as he would be alone with my mom and the dog, but he also still doesn't want my mom to have any respite care either.
I just feel trapped and bored stiff right now, plus my dad has had very little enthusiasm for anything this week (understandably due to us all being struck by Covid, in which I've now recovered from) and he has been glued to the BBC and Sky News channels day in day out over the past week, even though he doesn't seem overly concerned about the current Ukraine situation himself, which has of course been dominating the headlines over the past couple of weeks.
My dad often bemoans the way the govt have been treating people like us for the past decade or so and the cuts, etc, but at the same time, doesn't seem to want anyone to help us.
A lot of it probably comes down to a lot of his longstanding mistrust of people who work in the health and social care profession, and prejudices he can't shake off.
Yet ironically, he didn't really seem to bat an eyelid at the time over the hell I went through at the residential school and often didn't seem to believe me when I told him (and my mom) what I had been through every week, plus both my parents (for better or worse) seemed far more preoccupied with their jobs at that time, whilst I was 'out of sight, out of mind' in that hellhole, though I think my dad now regrets not taking my concerns at that time seriously enough.
I still feel at a loose end and like a prisoner in my own home right now.
What would being at this respite unit entail in terms of hours spent there and timetable of activities offered?
You say that you are bored but are not ready to take on any form of volunteering work which may give you an outlet and a chance to use your specialist knowledge? It would also give you a routine and a chance to get away from the constant bombardment of news at home. It must be hard to cut off from your dad's rigid views about certain triggering topics too?
Pulisa has a good point. There's a whole world out there full of interesting things and, yes, decent people.
spectrum123
19-02-22, 18:40
You have to make a choice that is right for you. Much as your father's views are important, it ultimately is what is right for you, you're an adult. Whilst parents might not always agree which their child's decisions, you are no longer a child and have the right to choose what you want to do.
Ultimately, it might be a break for both of you?
You have to make a choice that is right for you. Much as your father's views are important, it ultimately is what is right for you, you're an adult. Whilst parents might not always agree which their child's decisions, you are no longer a child and have the right to choose what you want to do.
Ultimately, it might be a break for both of you?
I did actually mention the respite thing to my dad today but he said it's well down his list of priorities right now.
Also I hope this next big storm has blown over by Tuesday as I really want to return to my day centre (I was off last week due to Covid, that I have now finally recovered from), as I'm sick to the back teeth of being cooped up at home right now.
If there are still adverse weather conditions by Tuesday that warrant staying indoors and not going out, then so be it.
But it's not well down YOUR list of priorities and you are an adult so can make your own mind up as to whether you would like to pursue this now. You don't need to ask his permission. It's YOUR life and you are bored and unmotivated at home all the time.
But it's not well down YOUR list of priorities and you are an adult so can make your own mind up as to whether you would like to pursue this now. You don't need to ask his permission. It's YOUR life and you are bored and unmotivated at home all the time.
You're right, but he says he really doesn't want the upset from it all right now. Plus he says I would probably be down the respite unit's priority list right now as well, as there will be other people who are far more needy than I am right now.
I think he still has a blatant mistrust of social workers (and the authorities in general).
He said that he never particularly happy with me having to attend respite units back in the 90s when I was younger, and he thought they were a total waste of time and more of a hindrance in his opinion, but he said he only agreed to it to appease my mom at the time.
spectrum123
20-02-22, 16:28
You're right, but he says he really doesn't want the upset from it all right now. Plus he says I would probably be down the respite unit's priority list right now as well, as there will be other people who are far more needy than I am right now.
I think he still has a blatant mistrust of social workers (and the authorities in general).
He said that he never particularly happy with me having to attend respite units back in the 90s when I was younger, and he thought they were a total waste of time and more of a hindrance in his opinion, but he said he only agreed to it to appease my mom at the time.
That's his opinion. You have to make your own mind up, and you won't know without trying it, if you feel it would do you good to be in a different environment.
If you don't like it, go back home, can't see they have any legal right to prevent you leaving?
You don't know where you would be on the unit's waiting list. Your mother has dementia so I would imagine that this would be a concern especially as your dad refuses to have any outside help and expects you to help him with her? He may say that he doesn't want help but he can't control what you say you need or are you afraid to confront him? I could well understand it if you were because he sounds like a very dominating and domineering man.
You don't know where you would be on the unit's waiting list. Your mother has dementia so I would imagine that this would be a concern especially as your dad refuses to have any outside help and expects you to help him with her? He may say that he doesn't want help but he can't control what you say you need or are you afraid to confront him? I could well understand it if you were because he sounds like a very dominating and domineering man.
I don't think my dad's a domineering person per se; I think he's just been severely bogged down with everything that's been going on over the past 2 years, of which we all have, and I don't think he can cope with the thought of being too overwhelmed with everything right now, especially whilst recovering from Covid himself, plus he's obviously been on a bit of a downer over the past few days as a result.
In fact, it used to be my mom who was the domineering person in our family, up until the onset of her dementia from about 2014 onwards, and she used to go mega apesh1t if anyone sabotaged any of her plans/agendas, be it my dad, myself, or my brother, even if unwittingly.
My original (and failed) respite care back in the 90s at both sites I attended was mostly part of one of my mom's impulsive and ill-thought-out agendas.
But this is completely different now though.
That's his opinion. You have to make your own mind up, and you won't know without trying it, if you feel it would do you good to be in a different environment.
If you don't like it, go back home, can't see they have any legal right to prevent you leaving?
I think my dad is just a bit overprotective towards both me and my mom, and he probably feels a bit uneasy at the thought of either of us being in someone else's care overnight, especially with certain hazards like Covid still around.
You're right in the sense that myself attending any respite care is non-compulsory, and if it's not quite to my liking I just don't have to return again. Simples.
I reckon my dad is probably a bit apprehensive about that, especially owing to bad experiences in the past, but like I said to Pulisa, this is different now.
Of course I can understand your dad being protective of you both and not having any faith in SS etc but ultimately it's your needs that are important here and you say that you are fed up of the restrictions at home and want to consider the unit again? There's a fine line between being protective and being controlling. I have to remind myself of this a lot as I have 2 adult children with ASD at home and it's very hard to get it "right" if there is a "right"? One thing that they both need is a structured routine to make them feel safe and to give their lives a purpose.
I think all 3 of us are a bit stuck in a rut right now.
Obviously the current weather situation isn't helping a jot.
I suspect a change of scene would be really helpful to you right now.
I'm a bit late coming to this thread and after reading through I'd like to put my views forward. Because I've read the thread from start to finish I can blatantly see how some escapism keeps cropping up.
I can also see how your mum's condition and probably an almost nurse like routine for your mum with your dad focused on everything ticking over nicely can be mentally draining and regimented.
I'm also not a fan of care homes through my experiences and as you say you get at least one bad apple, sometimes several in each place. This can happen in any workplace, not just care homes. Word of mouth or looking up their ways CQC does help, but I'm still wouldn't be jumping for joy. Day centres are completely different, even a day at a care home.
But I'm thinking it's escapism you need Lencoboy and a week, or weekend still leaves you with a shortlived fix with a hole in your pocket.
Personally I think you need to look at reconstructing your week. To maybe have more out days than in.
I know you can attend different day centres on a different day each week with a varied interest from each of them. You might want to look at that. And what about farms, allotments, animal centres? A couple of hours or half a day. This is something you could research.
I think you need weeks constructed in a way you have something to look forward to but not regimented that you see it as boring routine.
I was in a position where I was living with my parents when my dad had parkinsons and my mum had issues with her health and can wear you down. Even bring you down. So your need for some sort of respite is needed.
I can hear you also respect your dad's views and opinions.
In the end it is your choice, your life and even though I've told you my opinion too, it's to be taken as thoughtful suggestions, only you can make up your own mind.
MyNameIsTerry
21-02-22, 12:12
Lenco, I think Carnation raises a good point about you needing more breaks from home each week. Do your day centres advertise local schemes? The centre near me, which we used for mental health walk in sessions once a week, had other activities from walking to gardening.
Maybe something in an environment aimed at people who are struggling with mental health would be a safer place giving you a bridge into things like volunteering later on?
Thanks to everyone for your replies and suggestions.
I think my dad going through a down period over the past week or so has rubbed off on me a bit, especially as he seems to have been glued to the BBC and Sky News channels alternately day in day out during the most part of the past week, who have in turn been endlessly spewing out depressing stuff.
Today he appears to have been a little more active (which hopefully means he's on the mend at long last), and tomorrow I shall be returning to my day centre, provided of course the trains don't get cancelled if the storms persist, but fingers crossed the worst of them might blow over before then.
Lenco, I think Carnation raises a good point about you needing more breaks from home each week. Do your day centres advertise local schemes? The centre near me, which we used for mental health walk in sessions once a week, had other activities from walking to gardening.
Maybe something in an environment aimed at people who are struggling with mental health would be a safer place giving you a bridge into things like volunteering later on?
Terry, that's a great idea. Lenco, I think it would be really good for you to do something that focused a little less on your disabilities and gave you the chance to be proud of yourself.
Have you ever had Employability suggested to you? They look into volunteering and paid work opportunities with support and only with organisations who are well vetted and welcoming to neurodiversity. This would be something offering you an alternative to day centres if you wanted to explore that route?
Have you ever had Employability suggested to you? They look into volunteering and paid work opportunities with support and only with organisations who are well vetted and welcoming to neurodiversity. This would be something offering you an alternative to day centres if you wanted to explore that route?
Not ATM, but thanks for the advice, and of course, nothing can be ruled out in the future.
BTW, my dad seems like he is more back to his usual self again now, thank god!
I've been thinking about this again this morning, and remembering how 'hodge-podge' the first unit I stayed at back in the early 90s was, not just with the arbitrary rules and poor communication by certain staff members (e.g, the rows over the staff toilet, office, staff smoking in the building, etc), but most notably the age mismatch of clients staying there on occasions, e.g, people like me then in early teens being mixed with say, toddlers, which did actually happen on a few stays there of mine.
I really have no idea what planet the Department of Health and Social Care at Staffs CC were on at the time, just seemed so ill-thought out to me.
I know it won't be like that at the new place of which I'm still yet to pursue (obviously pandemic permitting), as it's for adults only, but I still can't help imagining scenarios of certain arsy staff members with their own agendas working there, though I know that people smoking in such premises is now firmly a thing of the past.
While not really relevant in the current context, I've just remembered about my mom sarcastically telling me back in 1990-91 when I was complaining about certain staff members smoking inside the building at my first respite unit (for children) that she was hardly surprised certain staff members there smoked having to deal with demanding kids like me.
Whilst I do appreciate and acknowledge that some people do tend to smoke (and/or drink) more during periods of intense stress, I did feel that my mom guilt-tripped me a little on that occasion that I may have pushed the staff members there who smoked to start smoking, even though they probably took up the habit long before they met me (and the other clients there) for the first time, and back when it was the norm for most people to take up and indulge in said practice.
My mom may have partly said it in jest, but as a 13-year-old (at the time) with ASD, I still wasn't very competent at distinguishing between jest and being serious.
Also whenever I got bullied by other youngsters around that same era, I was often told that I probably asked for it!
I know how tough it is, but you can't be an eternal prisoner of your own past. This is why a lot of us are suggesting that you start doing something with your life rather than relying on institutional environments.
I know how tough it is, but you can't be an eternal prisoner of your own past. This is why a lot of us are suggesting that you start doing something with your life rather than relying on institutional environments.
Easier said than done though, BI.
My mom has really driven me and my dad to distraction today (my daycare days are currently Tuesdays and Thursdays) and I really felt like having a violent meltdown this afternoon (without necessarily assaulting anyone physically).
Sometimes I really do wish someone would take me away for once and for all, even if it was back to somewhere like the residential school I attended, as much as I hated it at the time!
Wouldn't it be better if you could go out and, say, walk dogs or sort shop stock?
Easier said than done though, BI.
My mom has really driven me and my dad to distraction today (my daycare days are currently Tuesdays and Thursdays) and I really felt like having a violent meltdown this afternoon (without necessarily assaulting anyone physically).
Sometimes I really do wish someone would take me away for once and for all, even if it was back to somewhere like the residential school I attended, as much as I hated it at the time!
Why is it easier said than done though?
I appreciate that you are very scared of any change but I agree with Blue. You have so much specialised knowledge yet want to limit yourself to institutions. Has anyone ever suggested supported volunteering to you? Just a couple of hours at a time to begin with to build up your confidence and get you out of the house? You said you were bored and hemmed in? It must be hard keeping your personal space with your mum's condition being as it is?
Agreed, Pulisa, he has so much to give to the world and I think he could get a lot back.
Agreed, Pulisa, he has so much to give to the world and I think he could get a lot back.
Yes he could but the first step towards a change of direction is always tough. I just think you need a life away from day centres/respite units in order to do what gives you a sense of purpose and independence?
Agreed, Pulisa, he has so much to give to the world and I think he could get a lot back.
Thanks BI. I really feel very touched by your suggestion that people probably do have faith in me after all!
I second BI and Pulisa's comments.
I think you've got a lot to give to this world.
I second BI and Pulisa's comments.
I think you've got a lot to give to this world.
Thanks Catkins.
BTW, my first (post-Covid) week back at my day centre has been great.
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