I wonder if it is common with others. My wife has Alzheimer's and to give me time to myself we have carers for a few hours and also friends and relatives. I do however somewhat pay the price emotionally for the rest of the day and evening there is total confusion and wandering round the house ,I wish visitors could call round during the evening to see how things really are. I do sometimes wonder if it is actually counter productive.i do hope this does not seem ungratefull on my part.
Very confused after having carers/visitors
- Thread starter slim-jim
- Start date
@slim-jim I've found the same. We've started (in July) getting a two-hour sitting service once a week in the afternoon so's I can have time to do 'stuff' or simply get away. After they've left my OH becomes fretful, concerned, confused and has expressed a fear there's some dastardly plan afoot to have him taken away.
Like you, I'm left picking up the pieces. It's making me wonder if it's worth the effort. It may be two hours but by the time I've done the meet and greet and settled the OH down with the sitter time's cracking on and I dread the following hours.
We don't have any other visitors - friends have evaporated. Family doesn't exist to any meaningful extent.
Like you, I'm left picking up the pieces. It's making me wonder if it's worth the effort. It may be two hours but by the time I've done the meet and greet and settled the OH down with the sitter time's cracking on and I dread the following hours.
We don't have any other visitors - friends have evaporated. Family doesn't exist to any meaningful extent.
I certainly find that Mum becomes much more agitated and disorientated when we've had visitors. We don't get many, but as you say, sometimes it does seem counter productive.
I have learned never to tell her if we are expecting a visit, or going out to meet friends, as it becomes a fixation , and I'm nearly at my wits end by the time it actually happens.
I have learned never to tell her if we are expecting a visit, or going out to meet friends, as it becomes a fixation , and I'm nearly at my wits end by the time it actually happens.
@lollyc an @slim-jim So far, we've had 8 visits with three different carers.
The last three visits have been done by the same young chappie who seems to be making some headway although my OH does express doubts about the whole thing. I've kept a diary of each visit - who turned up - how they engaged and how my OH reacted in return.
I know it's early days and it's been a bit of a rough ride (had to ask one sitter to leave) but as @slim-jim says, I don't want to be ungrateful for this well-meant little crumb of comfort.
I think I'll give it a further 8 weeks then make a proper assessment of the situation before deciding whether to continue with the sitting service.
The last three visits have been done by the same young chappie who seems to be making some headway although my OH does express doubts about the whole thing. I've kept a diary of each visit - who turned up - how they engaged and how my OH reacted in return.
I know it's early days and it's been a bit of a rough ride (had to ask one sitter to leave) but as @slim-jim says, I don't want to be ungrateful for this well-meant little crumb of comfort.
I think I'll give it a further 8 weeks then make a proper assessment of the situation before deciding whether to continue with the sitting service.
Hi, I find my mum gets agitated if some carers/visitors bombard her with questions, trying to make smalltalk, mum can't answer and gets confused and upset, some of the more regular carers now know this and leave her in peace , and will chat when mum makes conversation, usually about something on TV.
@AbbyGee , do you fund these visits? If so, can you request a specific person?
Mum is self-funding and we have a carer, found through a local "introduction agency" (they call them personal assistants), so that Mum only has to deal with the same person each time. We were also planning to use Age UK to provide a sitter (no personal care) for a couple of hours. For various reasons this got put on hold, but generally it would have been the same person each time. I don't think they provide this service everywhere.
Mum is self-funding and we have a carer, found through a local "introduction agency" (they call them personal assistants), so that Mum only has to deal with the same person each time. We were also planning to use Age UK to provide a sitter (no personal care) for a couple of hours. For various reasons this got put on hold, but generally it would have been the same person each time. I don't think they provide this service everywhere.
@lollyc Fortunately (or maybe not) we're not funding these sitter breaks. They were arranged after I had a total meltdown and did an online Carer Assessment with my local council. I can, apparently, have up to three visits a week. It's aimed at keeping me up and running so as not to need more expensive care for either of us one way or the other. A bit like a sticking plaster NOW rather than having stitches and a full dressing later.
I'm wondering if I increased the visits my OH may be more accepting of the idea and not treat them as such a 'freaky' event. I really don't know what to do for the best.
I have a contact at my local Carer's Centre so can speak with or email her if need be. If I could make sense of what I mean or really need then I'd do that but right now everything's just bubbling round in my head in a jumbled up cloud of confusion.
I'm wondering if I increased the visits my OH may be more accepting of the idea and not treat them as such a 'freaky' event. I really don't know what to do for the best.
I have a contact at my local Carer's Centre so can speak with or email her if need be. If I could make sense of what I mean or really need then I'd do that but right now everything's just bubbling round in my head in a jumbled up cloud of confusion.
What you're describing is, unfortunately, a very typical dementia 'thing' and ridiculously, it's one of those things that no information leaflet, or advice from any agencies or authorities offering 'support' ever mentions explicitly.
There's a behavioural response that you will hear called 'hosting' or 'show-boating' where the person with dementia is all smiles and appears completely lucid when company arrives, but is exhausted, confused and unable to process their emotions when they (finally!) leave.
This is something that really angers me about the way advice on dementia is so much of a drip-feed for us family carers! It's something pretty damn fundamental to our ability to build our own resilience and manage and inform relationships with friends and wider family and yet where is it accurately and honestly described? Usually only in response to posts like yours.
The truth is that some family and friends will just never really understand and unwittingly rub salt in the wounds by trumpeting about how pleased your PWD was to see them and how well they looked and how much they enjoyed seeing them again. You learn eventually to grit your teeth and smile politely!
Others do a fabulous disappearing act, or make up creative reasons for not visiting, like, "the house is on a really bad corner and we don't like to park there". Instead of saying, "the rest of the road is straight and there's a free car park opposite - duh!" you learn to nod and accept that they just can't deal with the situation right now.
You can only mange dementia one hour at a time, let alone one day at a time and some days, bitterly hard though it is, you have to accept there's literally nothing you can do to bring your PWD back in that moment. You can manage dementia by keeping to routines and learning to look for the signs in posture, mood and expression that signal a change for the worse. I had to learn to shut up! Before mum was diagnosed, I would try to reason with her and talk her out of it. Now I know sometimes, watchful silence is sometimes best and a good sleep can rectify an awful lot.
There's a behavioural response that you will hear called 'hosting' or 'show-boating' where the person with dementia is all smiles and appears completely lucid when company arrives, but is exhausted, confused and unable to process their emotions when they (finally!) leave.
This is something that really angers me about the way advice on dementia is so much of a drip-feed for us family carers! It's something pretty damn fundamental to our ability to build our own resilience and manage and inform relationships with friends and wider family and yet where is it accurately and honestly described? Usually only in response to posts like yours.
The truth is that some family and friends will just never really understand and unwittingly rub salt in the wounds by trumpeting about how pleased your PWD was to see them and how well they looked and how much they enjoyed seeing them again. You learn eventually to grit your teeth and smile politely!
Others do a fabulous disappearing act, or make up creative reasons for not visiting, like, "the house is on a really bad corner and we don't like to park there". Instead of saying, "the rest of the road is straight and there's a free car park opposite - duh!" you learn to nod and accept that they just can't deal with the situation right now.
You can only mange dementia one hour at a time, let alone one day at a time and some days, bitterly hard though it is, you have to accept there's literally nothing you can do to bring your PWD back in that moment. You can manage dementia by keeping to routines and learning to look for the signs in posture, mood and expression that signal a change for the worse. I had to learn to shut up! Before mum was diagnosed, I would try to reason with her and talk her out of it. Now I know sometimes, watchful silence is sometimes best and a good sleep can rectify an awful lot.
Sadly our local carers group told me we don't get any respite or sitting allowance. Very short - sighted because, as you point out, it would allow the carer to struggle on a bit longer before total collapse.
We get 8 hours a week funded after carer assessment. But we could either have council provide carers/sitters or have it as a monthly direct payment I can spend as needed. Can pick one key person or two then which works for us as OH likes the two people who alternate. Both just booked through a care agency where I can see profiles, message and talk before they come. OH recognises them each time though never remembers their name. But each now know him well so bring appropriate bits and bobs with them to help eg one brings a book about dogs they can look at together as they know he likes dogs, and both know local area now so can go out to cafe or just wheelchair walk out, and I really do trust both. But fiddly for paperwork as I had to open a bank account just for the payments and provide regular statements with invoices and receipts etc but the continuity is good and it's a decent break as it is most of the day away for me ... I don't think lots of different faces or shifts or just a few hours would work at all for us. IH would get very confused and I wouldn't have time to do much myself eg: on a day when carer there I can drive over and see my sister for lunch, which wouldn't be possible with just a few hours. So if you currently get up to three short visits a week and not always same person maybe see if your council do direct payment instead? One good break might be better sticking plaster for both of you!
Last night I fired of a ranty wild woman at end of tether email diatribe to the Carers Centre and had return phone call today. Well, half a phone call. Had to cut it short when the OH realised I'd been in the other room for 10 minutes so went into one of his panic ill dying attacks. Sorry if that sounds harsh but hell's bells! If I didn't know him better I'd have dialled 999!
The upshot of the aborted call was my contact emailed me and I'll try and continue the conversation another time. I think I'll try for a second sitting session each week and see how it goes. I mentioned I wasn't over impressed with the care company and I feel my concerns may have already been voiced by other service users but (and it's a big but) if the Carers Centre - City Council run and pay the bills - can get an agreement to not just send random people each time then I'm willing to give it a further try, especially if they can secure the visits of the brilliant young lad that does so well.
So time for a deep breath and to construct a sensible non ranty wild woman at end of tether email diatribe.
The upshot of the aborted call was my contact emailed me and I'll try and continue the conversation another time. I think I'll try for a second sitting session each week and see how it goes. I mentioned I wasn't over impressed with the care company and I feel my concerns may have already been voiced by other service users but (and it's a big but) if the Carers Centre - City Council run and pay the bills - can get an agreement to not just send random people each time then I'm willing to give it a further try, especially if they can secure the visits of the brilliant young lad that does so well.
So time for a deep breath and to construct a sensible non ranty wild woman at end of tether email diatribe.
Whoooo! Dead proud of myself! Took a deep breath, put my big girl pants on and constructed a non ranty email to my Carers Centre. Prompt reply back today so if all goes to plan then we'll be getting a second sitter for two hours on Fridays, probably starting next week.
I've decided the best use of the hours, in the first instance, is to get stuck in to all the house stuff that's been put off for so long and is annoying the hell out of me. There's ironing piled high, half finished sorting out jobs, bags and boxes of stuff all over the place and the house is starting to resemble a hoarder's den. We're not actually living in a pig sty - it's just so untidy I hardly know where to begin. Think 'rabbit in the headlights'.
First! Construct a plan and get it down on paper. Start bit by bit, get a tick in the 'done' box and begin to feel better about myself. I wonder what will happen in reality? But I mustn't begin by being doubtful. I can and I will so onward and upward, to tidiness and beyond!
I've decided the best use of the hours, in the first instance, is to get stuck in to all the house stuff that's been put off for so long and is annoying the hell out of me. There's ironing piled high, half finished sorting out jobs, bags and boxes of stuff all over the place and the house is starting to resemble a hoarder's den. We're not actually living in a pig sty - it's just so untidy I hardly know where to begin. Think 'rabbit in the headlights'.
First! Construct a plan and get it down on paper. Start bit by bit, get a tick in the 'done' box and begin to feel better about myself. I wonder what will happen in reality? But I mustn't begin by being doubtful. I can and I will so onward and upward, to tidiness and beyond!
well done. dont have a too big a task each time as it could overwhelm. i found that when i cleared a room it was time consuming. keep it achievable
@jennifer1967 I'm intending to little bits here and there rather than try one area at a time. I think it will gradually ease the task so the OH shouldn't notice stuff 'disappearing'. The tidy up is also a major clearance exercise so little by little will be the way to go. That way, I won't lose interest / the plot / my senses if one area doesn't end up spiffy sparkly clean by whatever timetable I set myself.
@Jaded'n'faded Brilliant idea, just brilliant. Off to do that RIGHT NOW! Yay! ?
@Jaded'n'faded Brilliant idea, just brilliant. Off to do that RIGHT NOW! Yay! ?
I've done an online carer's assesment request, despite being told by our county carers group that we go no respite. Nothing ventured.... Unfortunately, I was feeling slightly ****ed off when I wrote it, and said don't bother to contact me if you're only going to offer to broker some paid for relief. Think I may have shot myself in the foot!
I've found my OH is always tired after appointments or visitors too, we don't have any diagnosis for him yet, that is a battle in its self.
We don't have many visitors mainly just the eldest daughter ( have other kids at home) she is a great distraction but OH is always tired afterwards.
We are just getting over a very stressful event with one of the kids,one in which OH went into 'host mode' and got bombarded with questions, it has taken him over a week to get over the tiredness and still not fully recovered from the extra confusion he suffered ,the after effects of this incident has definitely got me thinking about what may happen in the future if we ever get a diagnosis for him and people in to help, if he got anywhere near the reaction in the future to this reaction then would I be willing to go through this again for the sake of a couple hrs break...
We don't have many visitors mainly just the eldest daughter ( have other kids at home) she is a great distraction but OH is always tired afterwards.
We are just getting over a very stressful event with one of the kids,one in which OH went into 'host mode' and got bombarded with questions, it has taken him over a week to get over the tiredness and still not fully recovered from the extra confusion he suffered ,the after effects of this incident has definitely got me thinking about what may happen in the future if we ever get a diagnosis for him and people in to help, if he got anywhere near the reaction in the future to this reaction then would I be willing to go through this again for the sake of a couple hrs break...
Funnily enough Mum coped much better with going to clubs, rather than having visitors at home. Maybe she didn't feel the need to host?
Perhaps @Unsure2021 , you could look into groups and activities in your area that your husband could attend, rather than having carers in?
Perhaps @Unsure2021 , you could look into groups and activities in your area that your husband could attend, rather than having carers in?
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