Advocacy, the story so far

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
I'm here again asking for advice!
Mum has mid (I think) stage Alzheimer's and moved into an extra care flat in November. It's been a turbulent few months but she is showing signs of setting especially at night.

Not long after moving in SW advised to take mum out of many of the groups she was attending during the day. I stopped two groups and kept two on. The time she now spends in the flat is managed with the help of private carers, carers from the flats and family.

Now SW wants me to Cut back on the care hours so she spends more time alone in the flat. They think she has too many different people coming to see her each day and this is over stimulating and confusing for her. Their reasoning is that they want her to settle further and think of the flat more as her home. They suggest leaving her alone all morning with just the morning and lunch pop ins they provide.

Problem for me is that I know how upset and anxious she gets when left completely alone for long periods. I've asked them to try her with day care but they continue to refuse until she becomes more settled. My theory being if she could try day care and have more structure to her day I wouldn't need umpteen different people to keep her company.

Anyhow I've been reluctant to leave her but said I would try, but SW has now decided to appoint an advocate to mum. Don't know why, but this makes me feel uneasy as if they somehow don't trust me to be considering mums best interests. Should I be worried about the involvement of an advocate? Mums lost the ability to make rational choices about most things and I know the situation hasn't been perfect for a while but I really am trying to get the best I can for her. Why do I feel like I've done something wrong?

Anyone out there with some reassuring advice?
 

Jessbow

Registered User
Mar 1, 2013
5,678
0
Midlands
I though 'extra care' flats were little more than flats with a warden- they are round our way.

Are they perhaps thinking that she needs more support than they feel equipped to accommodate?
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
I though 'extra care' flats were little more than flats with a warden- they are round our way.

Are they perhaps thinking that she needs more support than they feel equipped to accommodate?

Hi Jessbow
Yes the flats are pretty much how you describe, there are one or two residents there with dementia who seem to manage quite well though. I do think they feel unable to support her just not sure how having an advocate fits in with all of this.
 

HillyBilly

Registered User
Dec 21, 2015
1,946
0
Ireland
I would say that you probably know your Mum best. "Alone" is not really a good thing. Esp if any risk of falls or domestic "accidents".
My Mum had an advocate too - not for this scenario mind. She was a very useful and empathetic person, at the time.
Is an extra care environment the right one for your Mum? I'm sorry I don;t know your back story. Day care is usually a good option - not sure why this is being discounted? Is your Mum totally or partially LA funded?
 

fizzie

Registered User
Jul 20, 2011
2,725
0
I agree that mum and 'alone' are not good at all. A day care option one or two days a week would be good and I would insist that it is tried. Tell them she doesn't like being alone and it makes her very anxious and that you want the care plan changed. I think I would put my foot down hard at least to try another way for about 8 weeks and see how it goes x
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
I guess that the SS want to have an independent view of Mum's state of mind and ability to manage in the flat by herself. Perhaps they feel that you are carrying the burden yourself too much. Let them try it... you can hover in the background.
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
I guess that the SS want to have an independent view of Mum's state of mind and ability to manage in the flat by herself. Perhaps they feel that you are carrying the burden yourself too much. Let them try it... you can hover in the background.

Hi everyone and thanks for your responses.

Mums is fully self funding, POA is in place. SW have explained that they want to assess mums ability to manage alone in the flat but I'm struggling with leaving her for long periods.

I really don't see why she can't try day care just one day a week, she has done well to settle at night and I'm still hopeful that the days will,get better. She has gone back to her old home a few times during the day now, but she never wanders aimlessly. She has a gps tracker now but I do think the warden isn't that comfortable having her there. She seems to be the most demanding resident there.

I still have the option to take her back to her old home which has been fully renovated but I know this is not the best idea. I really want her to settle in the flat but am struggling with all of this. Mums still very able but all this stress and upset is making her worse.

I want the best for her while she can still enjoy life, I think she's as worn out as me with it all!
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
Hi everyone and thanks for your responses.

Mums is fully self funding, POA is in place. SW have explained that they want to assess mums ability to manage alone in the flat but I'm struggling with leaving her for long periods.

I really don't see why she can't try day care just one day a week, she has done well to settle at night and I'm still hopeful that the days will,get better. She has gone back to her old home a few times during the day now, but she never wanders aimlessly. She has a gps tracker now but I do think the warden isn't that comfortable having her there. She seems to be the most demanding resident there.

I still have the option to take her back to her old home which has been fully renovated but I know this is not the best idea. I really want her to settle in the flat but am struggling with all of this. Mums still very able but all this stress and upset is making her worse.

I want the best for her while she can still enjoy life, I think she's as worn out as me with it all!

I may be being a bit dim here, but if your mum is fully self funded and you have POA, why can't you just get on and do what you feel is best for your own mother? I am sure you probably understand her needs and what will suit her best, better than your average SW.

I'd have thought most SWs would have enough to do with the LA funded, and with people who have no relatives to bother about them, or none who will exert themselves.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
I think the SW is likely to be something to do with the extra care.

My mum is in an extra care flat, the building is run by a housing association, which I understand the majority are, before she could move in, she had to be assessed by SS, and only SS can approve a change in her care package, as the carers are provided via the county council. My mum is self funding and will be for many years in a care home.

The set up with extra care is quite different to sheltered, in that it goes way beyond just having a warden on site. Most have a restaurant/bistro of some sort, there is an activities manager, who arranges various activities throughout the week and instead of the carers coming into the building for each call, there is a team of carers on site, together with a manager.

The care calls are for the same type of care as if you were in your own home, so my mum has 2x15 min calls a day to give her meds. The advantages as I see it are that because the care team are on site she has the same carers all the time, so she gets to know them, and they get to know her, and they stay for the full 15 mins as the next call is just down the corridor.

Extra Care is as I understand it is meant to be about independent living, with care support, I have experience from contact with the social housing sector of the ideals behind it. It was made clear to me when my mum moved in that they can only cope with PWD in the early stages, no wandering, and coping and understanding with the planned care calls. I fully understand the rationale in this, it wouldn't be fair on the majority of the residents without dementia to have wanderers.

So the SW is likely to have the say over whether Lynng's mum is suitable and can stay.

I know in another thread Lynng said she wasn't ready for her mum to go into a care home yet, but this is about your mum's needs not yours. I have read many times on TP that a PWD with a high level of anxiety settles really well in a CH. With dementia it isn't just about what someone is physically capable of, it is about what they can cope with, without getting upset. The thought processes to do everyday things can be too much for them, and they need the security blanket of someone helping them with these thought processes.

My mum took over 2 weeks to know how to find her kitchen from her bedroom in a small 2 bed flat, I had no choice but to move her in and walk away, as I work and at the time my youngest was too young to be left on his own when not in school on my one day off when I also had to fit the rest of my life, and weekends are taken over by other activities.

I think I recall you stayed with her for days and nights when she first moved in, and somehow, you have to back off. If this means she needs a care home, maybe that is best. The other alternative would be for mum to live with you.

The advocate will listen to all involved, and in law has to try and independently step into your mum's shoes to decide what is best I think.

It isn't nice to think our parents can't do things anymore and need this much support but the only way we can do our best for them is to choose an option which is right for them, where they are now, not where they were a year ago.
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
I may be being a bit dim here, but if your mum is fully self funded and you have POA, why can't you just get on and do what you feel is best for your own mother? I am sure you probably understand her needs and what will suit her best, better than your average SW.

I'd have thought most SWs would have enough to do with the LA funded, and with people who have no relatives to bother about them, or none who will exert themselves.

Yep think you've hit the nail on the head there. I honestly think the SW is trying to help but yes I can just go ahead and do what I think best. Crazy as it sounds I want to take mum home. We were up there the other day and as we were leaving she asked whose house is this, as we stepped outside i said it's yours, as she saw the garden she said oh yes of course it's mine. I know it's not going to be easy but surely can't be any worse than this. She paying out so much money for Carers and rent I think we could manage as well in her own home, if it doesn't work out care home it is then because the stress and anxiety this situation is causing that's going to be the next move from here. I have to try I'll never forgive myself if I don't. I would like the day care though and I need the SW for that, am hoping we can get some sort of routine established for the future which could help her spend a bit longer at home.

It might sound selfish on my part to put mum through this but it feels cruel to leave her in this flat much longer. If she had no home and her choices were more limited it would probably be easier to get on with things instead of all this toing and froing but we do have a choice.

Thanks again for reading my ramblings I'm learning all the time just trying to do my best xx
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
I think the SW is likely to be something to do with the extra care.

My mum is in an extra care flat, the building is run by a housing association, which I understand the majority are, before she could move in, she had to be assessed by SS, and only SS can approve a change in her care package, as the carers are provided via the county council. My mum is self funding and will be for many years in a care home.

The set up with extra care is quite different to sheltered, in that it goes way beyond just having a warden on site. Most have a restaurant/bistro of some sort, there is an activities manager, who arranges various activities throughout the week and instead of the carers coming into the building for each call, there is a team of carers on site, together with a manager.

The care calls are for the same type of care as if you were in your own home, so my mum has 2x15 min calls a day to give her meds. The advantages as I see it are that because the care team are on site she has the same carers all the time, so she gets to know them, and they get to know her, and they stay for the full 15 mins as the next call is just down the corridor.

Extra Care is as I understand it is meant to be about independent living, with care support, I have experience from contact with the social housing sector of the ideals behind it. It was made clear to me when my mum moved in that they can only cope with PWD in the early stages, no wandering, and coping and understanding with the planned care calls. I fully understand the rationale in this, it wouldn't be fair on the majority of the residents without dementia to have wanderers.

So the SW is likely to have the say over whether Lynng's mum is suitable and can stay.

I know in another thread Lynng said she wasn't ready for her mum to go into a care home yet, but this is about your mum's needs not yours. I have read many times on TP that a PWD with a high level of anxiety settles really well in a CH. With dementia it isn't just about what someone is physically capable of, it is about what they can cope with, without getting upset. The thought processes to do everyday things can be too much for them, and they need the security blanket of someone helping them with these thought processes.

My mum took over 2 weeks to know how to find her kitchen from her bedroom in a small 2 bed flat, I had no choice but to move her in and walk away, as I work and at the time my youngest was too young to be left on his own when not in school on my one day off when I also had to fit the rest of my life, and weekends are taken over by other activities.

I think I recall you stayed with her for days and nights when she first moved in, and somehow, you have to back off. If this means she needs a care home, maybe that is best. The other alternative would be for mum to live with you.

The advocate will listen to all involved, and in law has to try and independently step into your mum's shoes to decide what is best I think.

It isn't nice to think our parents can't do things anymore and need this much support but the only way we can do our best for them is to choose an option which is right for them, where they are now, not where they were a year ago.


Hi juggling mum, you do speak such sense and I totally agree with everything you say. Problem is my hearts still ruling my head at present.

The extra care facility was recommended by SW and she was assessed albeit a little rushed. I was at the time surprised at the speed in which it all happened. Mum wasn't coping well at home alone, SW came out assessed her and immediately put her forward for extra care (which btw she tried to talk me out of at the 11th hour, setting in more confusion for me). It was made clear to me also about the fact they could not cope with high levels of wandering and such like, and apart from some early problems this has settled at night, daytime still remains to settle completely.

There should be more positives about mum living there, there is no activities coordinator as such, just a coffee morning once a week and two bingo afternoons, all of which mum takes part in. She seems to like the carers and doesn't seem to mind who comes as long as she's not alone.

I realise I need to back off but I put myself under emense pressure to look after her. Mum was mostly raised by her grandparents, slept with her mother until the day she married dad. Her grandfather was very domineering as was my dad. They were happy and she has always been very much loved, but has never had to make any major decision her entire life. She's never done anything on her own and is at a complete loss without my dad. Both of my brothers are dead, she doesn't talk about them much, just says they're gone

I'm all she's got and it breaks my heart to see her so sad and I feel responsible for trying to make things better for her. Every time I walk away from her I know she'll just be sat there alone and I can't stand it. I know she won't get better I just want to try to make the time she has left as pleasant as possible. I know she'll never be happy but this is partly about me too, I need to be able to sleep at night knowing I've done my absolute best. I couldn't help my brothers or my dad I have to do all I can for mum.

I will wait to see how things go with the advocate and hopefully take advice from her/ him. Thanks x
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
Well finally heard back from social worker, wants to meet up Monday morning to explain what happens next. Not sure if she's found an advocate yet said she was struggling to organise one.

Mums just phoned, says she's just woke up in this flat and doesn't know how she got there. She's sorry to disturb me and must stop keeping doing this. I say it's ok she's not disturbing me. She sounds so sad and it makes me sad. I tell her to make a cuppa cause everything's better with a nice hot cup of tea. She says sorry again and will make a drink. She tells me to go back to bed and sorry for disturbing me again. I go get a cuppa too
and cry x
 

Margi29

Registered User
Oct 31, 2016
1,224
0
Yorkshire
Well finally heard back from social worker, wants to meet up Monday morning to explain what happens next. Not sure if she's found an advocate yet said she was struggling to organise one.

Mums just phoned, says she's just woke up in this flat and doesn't know how she got there. She's sorry to disturb me and must stop keeping doing this. I say it's ok she's not disturbing me. She sounds so sad and it makes me sad. I tell her to make a cuppa cause everything's better with a nice hot cup of tea. She says sorry again and will make a drink. She tells me to go back to bed and sorry for disturbing me again. I go get a cuppa too
and cry x

Just been reading up on your post, it's awful to feel like this :(

I too sometimes feel the same as you. Phone calls, random unexplainable conversation etc... my mum is in sheltered housing ( not assisted care ) moved her near us 18 months ago. She lived on the coast and although my brother lived round the corner, we knew things were not ' right ' with mum. He said she would be put in a home if she got worse.

So myself and sister put mums name down on list and persuaded mum it would be good for her to live near us. As soon as a place came available mum came to Yorkshire.

Sometimes things are good, mum washes and dresses self and can do basic foods, although between us both we take warm meals round to mum. Medication wise, sometimes she does get mixed up. She was diagnosed last July, but suspect mixed dementia has been going on for a number of years.

I too used to leave her and cry, also like you I wouldn't be able to not call and see mum,
She had a hard life, I know she gets frightened ( sees imaginary people) but I will always be there for her, to fight her corner :D

You sound a lovely caring daughter, hope things calm down ( it did with my mum ) x
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
Just been reading up on your post, it's awful to feel like this :(

I too sometimes feel the same as you. Phone calls, random unexplainable conversation etc... my mum is in sheltered housing ( not assisted care ) moved her near us 18 months ago. She lived on the coast and although my brother lived round the corner, we knew things were not ' right ' with mum. He said she would be put in a home if she got worse.

So myself and sister put mums name down on list and persuaded mum it would be good for her to live near us. As soon as a place came available mum came to Yorkshire.

Sometimes things are good, mum washes and dresses self and can do basic foods, although between us both we take warm meals round to mum. Medication wise, sometimes she does get mixed up. She was diagnosed last July, but suspect mixed dementia has been going on for a number of years.

I too used to leave her and cry, also like you I wouldn't be able to not call and see mum,
She had a hard life, I know she gets frightened ( sees imaginary people) but I will always be there for her, to fight her corner :D

You sound a lovely caring daughter, hope things calm down ( it did with my mum ) x

Thanks Margi29. It's so hard finding that ever elusive balance. Mums here now carer dropped her off she's had breakfast and a nice shower and all is forgotten again, but it stays with us as Carers as I'm sure the sad feelings stay with her she just can't remember why

Sister in law is taking her this afternoon and I'm off out for the first time in ages. Don't really feel like it but I think I need to. Meeting up with a mixture of older and younger cousins been arraigning since the last family funeral, we all agreed it's about time we got together without death surrounding us!

Keep up the good work with your mum too she's lucky to have you n your sister fighting her corner, n I will continue fighting my mums too xx
 

Lynng

Registered User
Jun 14, 2016
43
0
Bolton
Update on the advocate. SW now informs me that advocate was reluctant to take mums case which didn't surprise me probably though their resources were better paced elsewhere. Suddenly mum can have day care and she has her first taster day this Sunday. Not the day I would have chosen but at least she's in now, more important that she likes it then I can try to change the day. SW says she'll see me in 10 months!

D day is almost here as her house is almost finished and I need to decide this week whether to give notice on the flat. Really don't know what to do. There's pros and cons for both but ultimately I know she's safer in the flat. I wish I could remove the emoticon and act like a SW but it's so hard. I asked her what she would do if she wakes up in the night and doesn't know where she is, her answer, "turn the bl***y light on!" She says she misses her neighbours and feels like she's going mad in the flat. up until she moved there she never actually acknowledged anything was even wrong with her. Wish I had a crystal ball, anyone got one I could borrow
 

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