I don’t know what to do……

[sdmhred]

we’ve had twice daily NHS carers since tuesday and everything is getting worse. Mum is not coping with them parachuting in and needing things done in their timescale.

Mum will not get off the commode for them so their visits are being elongated. They have now been instructed to nurse her from bed. They were really brusque with me tonight which has upset me….and then told me not to cry….

With me she will get off fine …..if she is having a bad day I leave it for a while and come back to it.

I understand their reasoning….But monday she is most likely to going to respite but they have her down as mobile and not bed bound……

No phone lines open now for support 😢😢😢

Mum doesnr understand about just going to the toilet in her pad…and I don’t anyway want to leave her in wet until they come back at 11am tomorrow …

Residential is the next step but there’s been issues with the rarity of her physical health - I just need some help getting it sorted……

I guess I have to phone the respite tomorrow and say she’s stuck in bed and then they say ‘no thank you’ …and i get no where…😢😢😢

 

[canary]

But your mum isnt really bed bound, is she? Its only because of the time constraints of the carers and when she is in respite there wont be those same constraints. The instructions to the carers are not appropriate in a residential setting.

I would be upfront to the home and say that although she is mobile and can use the commode, sometimes it can take a long time to get her off it. A decent home shouldnt be fazed by that.

 

[JAYBEN]

we’ve had twice daily NHS carers since tuesday and everything is getting worse. Mum is not coping with them parachuting in and needing things done in their timescale.

Mum will not get off the commode for them so their visits are being elongated. They have now been instructed to nurse her from bed. They were really brusque with me tonight which has upset me….and then told me not to cry….

With me she will get off fine …..if she is having a bad day I leave it for a while and come back to it.

I understand their reasoning….But monday she is most likely to going to respite but they have her down as mobile and not bed bound……

No phone lines open now for support 😢😢😢

Mum doesnr understand about just going to the toilet in her pad…and I don’t anyway want to leave her in wet until they come back at 11am tomorrow …

Residential is the next step but there’s been issues with the rarity of her physical health - I just need some help getting it sorted……

I guess I have to phone the respite tomorrow and say she’s stuck in bed and then they say ‘no thank you’ …and i get no where…😢😢😢

Oh you must be at your wits end . Thats the only trouble when the care help is in and out . I understand that people have to work at some sort of timescale or others miss out but unfortunately the people who need the care dont . Does your gp s surgey have a care co-ordinator who can help you even if its only mentally supporting you . I'm afraid I dont know much about the care system as we havent reached that stage yet but you also need support . I felt I just had to reply to you just to say someone is listening . Is the Alzheimers support line open ? even if its just to rant about the inconsiderate nature of the NHS carer's - fancy telling you not to get upset . of course you're upset , it's your Mum . That's the trouble with a lot of the so called care help nowadays , a lot of them have no compassion at all and if you complain it just gets worse. They treat everyone as if they are the same when they are definately not . I really do hope you can get something sorted which is more appropriate for your Mum's needs . Please look after yourself , I know what its like even though our journey isn't as progressed as yours . Thinking of you .

 

[sdmhred]

Thanks both.

well I bit the bullet knowing mum best and she actually walked to the toilet which she prefers - weed and pooed and walked back! No problems apart from needing reassurance. I feel better that’s all out rather than in anyway…

you‘re spot on @canary - ive found recently that if I give her 10mins downtime on the loo or commode she will then mobilise - but the carers keep pressuring her which of course makes it worse…..I have asked then asked them to leave but they say they won’t.

That is why I think residential will suit her best as she can be given the time (and space) she needs to maximise her independence.

Ive already told the home she struggles when she is tired with mobility so I will stress when I speak with them to give her time and space. She’s very happy sat on a loo or commode with a cuppa.

 

[jennifer1967]

there shouldnt be any time constraints in respite, they can just keep going back until she is ready. i would have thought it would be easier to empty a commode than cleaning her up if she goes in her pad. i think the more you hurry a person, the more they dig their heels in and the slower they get. most will suffer mobility when they are tired.
home carers are on such a tight schedule but there is no need to be rude to anyone. this would be my problem that they change the routine.
not really answered your query but a few things to consider

 

[sdmhred]

Spoke to the home just now ……so reassuring …..she said to me the NHS carers don’t have the skills….without me prompting she said too many people and too many people around her won’t be helping…….exactly what I had observed…..

phew! Fingers crossed this respite works for mum!

 

[canary]

Yes, thats very reassuring @sdmhred . This sounds like a good home

 

[AmIgullible?]

Oh you must be at your wits end . Thats the only trouble when the care help is in and out . I understand that people have to work at some sort of timescale or others miss out but unfortunately the people who need the care dont . Does your gp s surgey have a care co-ordinator who can help you even if its only mentally supporting you . I'm afraid I dont know much about the care system as we havent reached that stage yet but you also need support . I felt I just had to reply to you just to say someone is listening . Is the Alzheimers support line open ? even if its just to rant about the inconsiderate nature of the NHS carer's - fancy telling you not to get upset . of course you're upset , it's your Mum . That's the trouble with a lot of the so called care help nowadays , a lot of them have no compassion at all and if you complain it just gets worse. They treat everyone as if they are the same when they are definately not . I really do hope you can get something sorted which is more appropriate for your Mum's needs . Please look after yourself , I know what its like even though our journey isn't as progressed as yours . Thinking of you .

Thanks both.

well I bit the bullet knowing mum best and she actually walked to the toilet which she prefers - weed and pooed and walked back! No problems apart from needing reassurance. I feel better that’s all out rather than in anyway…

you‘re spot on @canary - ive found recently that if I give her 10mins downtime on the loo or commode she will then mobilise - but the carers keep pressuring her which of course makes it worse…..I have asked then asked them to leave but they say they won’t.

That is why I think residential will suit her best as she can be given the time (and space) she needs to maximise her independence.

Ive already told the home she struggles when she is tired with mobility so I will stress when I speak with them to give her time and space. She’s very happy sat on a loo or commode with a cuppa.

Oh Lord! Been there, done that. I installed cameras in mum’s flat and some of the “care” I saw was appalling. Having said that, the job the carers do for about £11 an hour (they don’t get paid for travel time) are grim.

In the home, the care is first-rate. I go about five times a week and I’ve never seen any lapse in care. Get her into respite. You need a break. I have actually got so low (despite the best husband in the world) that I’ve not wanted to go on living. Don’t get to that stage.

 

[sdmhred]

Thanks 👍👍

I think the last week has been good in a way as it has given me a glimpse of home carers. I can see that that won’t be a good fit for me and mum so confirms our decision that residential is the right choice for her.

I committed myself to care for her whilst she could get out and about And we were able to have some enjoyable outings together. She now no longer is able and is much less interested- so time for my caring role to change!

I do hope the respite care home is good and it works out. I’m as confident as i can be.