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Mum wanted to go into care but now wants to come home

I can't fix it

New member
Jan 30, 2020
9
Hello everyone

My Mum has not been formally diagnosed (has been refusing to attend the memory clinic for over 4 years) but a home visit scored her low enough to indicate our concerns are valid.

December 2018 Mum said she wanted to move into a care home that she had previously stayed at full time. She felt lonely, was unsafe living by herself and suffered from a number of health issues (Triple A, glaucoma & macular degeneration, limited mobility due to arthritis, constant falls, unable to keep herself or the apartment clean, make a drink etc). We had tried carers for 8 months but, as they could only gain access via us and Mum thought they were too expensive for what they did, she cancelled them. Mum is a functioning alcoholic and we had almost bi-monthly trips to A&E. As a first post, I’m afraid this is a lot of rambling but I think it is important to have some background

My husband and I helped care for Dad, diagnosed with vascular dementia in 2005, moving closer when his state of mind really deteriorated in 2010. Although my siblings initially said they would spend a weekend alternate months to assist and give us a break, that never happened (sister lives around 2-3 hours away, brother closer to 5 hours).

My husband did all the practical supporting (shopping, hospital trips, day trips, DIY) and I did sorted their finance and paperwork whilst working full time. We also took them both on holiday.

Dad eventually had to move into a Care home at the end of 2011 and passed away late 2012. Mum was OK for around 12 months with daily visits, us doing shopping, cleaning etc but said she felt lonely and asked if we could move in together. Although we tried to encourage her to move into a retirement apartment (onsite support, restaurant, shops & company), she refused, saying it was too expensive.

As neither property was big enough (we rent after losing our home and all our savings in the 2007 financial crash when our business went bust, Mum owned) we managed to find a large apartment that we could afford to buy for us all to move into. Mum didn’t like it, so we found somewhere else and continued renting.

Mum’s drinking had by now become a real issue – that, plus her limited mobility, continual falls, failing eyesight etc meant we could not leave her alone for extended periods. Our youngest daughter was in hospital through most of 2014 into 2015 so we travelled from Yorkshire to London each Saturday to spend time with her, having arranged with neighbours to be on hand for Mum.

We lost our daughter in 2015. Later the same year, Mum announced that where we lived was too big and she wanted to move into a smaller place and thought her own flat was still too big. We had a family meeting with siblings and agreed that my husband and I would move into Mum’s flat and we would rent a smaller one next door. This also meant that, as my husband was in his late 60s, Mum’s flat had to be disregarded in any financial calculations.

Sibling visits happened occasionally but mainly we still provided all the support. I had a breakdown early 2019 and social services finally started to begin the process of assessing Mum’s request to move into care full time. Arguments with the LA regarding the property disregard were left to me to resolve.

Summer last year Mum suffered an internal bleed which required surgery (due to her brandy intake) and she was moved into the care home of her choice for respite which became permanent. Her instructions regarding the contents of the flat etc were discussed within the family and both siblings came to help (anything not wanted by a family member was to go to a charity shop).

Everything was fine for around 6 months. Mum had a room with outside space so she could just step out to smoke, she thought the staff were fantastic and both siblings pleased with the home (we have visited almost 30 over the years for Dad, respite for Mum and then a permanent placement). The charity I work for is about 5 minutes away so a couple of times a week I'd take lunch to eat with her and visit again each weekend, take shopping etc. One sibling would also visit & stay with us until they had a meltdown around 6 months ago

Over the last 6 months Mum has changed rooms 3 times, complained that I dumped her there, sold all her goods and she wants to come home. One of my siblings takes everything Mum says as gospel and has actually attacked me both physically and verbally. My other sibling is only interested in how any changes will affect their inheritance.

Mum is considered to have fluctuating capacity (one call will be full of abuse and we need to leave her flat, a follow up call 30 minutes later to say she can’t thank us enough for all we do). I’m in my 60s, my husband in his 70s and I just feel that, having put our lives on hold for 10 years, we need some peace.

We have another social services assessment next month and an advocate will be allocated to Mum. There is no Power of Attorney in place although I am on all paperwork as next of kin. The advocate is necessary as 2 siblings don’t feel Mum could live alone but the third does. At the very least, she is currently safe, well cared for and her alcohol intake can be regulated.

Has anyone else had to muddle through in such a way? Although I am terrified of becoming homeless at my age my concern (and that of the care staff) remains that Mum is incapable of looking after herself (even with drop on carers) and, if left alone, would drink herself to death within weeks. The balance between her human right to make her own decisions and that of ensuring her safety and well-being is so tricky. One sibling tells Mum she should sell the flat (that we live in) and move out of care but we will be the ones who then have to be there when she falls, needs company on the next trip to A&E . . .

Any suggestions? I have tried burying my head in the sand but found it clogged my ears :)
 

anxious annie

Registered User
Jan 2, 2019
442
Hi
I am so sorry for you for the loss of your daughter and now you are having such a tough time with your family.
I don't know about the legal aspects, are you and your husband living in a flat bought by your mum, or joint owner with you?
I would hope common sense would suggest that as your mum has so many health issues, and care staff feel she needs 24/7 support , that the best for your mum would be to remain in care for her safety. But I know SS don't always see this.
At a care meeting I would say that you are at breakdown and can no longer provide the care required by your mum.. If the sibling disagrees with this, then let them be the one to live with and care for your mum. You must stand firm.
If SS says your mum can go back home, would this mean she would have to come and live with you, or you would move out and then be homeless?
Surely you would have to be re homed ? Or am I being naive.
I hope others with more experience will be along to help you soon x
 

Hazara8

Registered User
Apr 6, 2015
514
Hello everyone

My Mum has not been formally diagnosed (has been refusing to attend the memory clinic for over 4 years) but a home visit scored her low enough to indicate our concerns are valid.

December 2018 Mum said she wanted to move into a care home that she had previously stayed at full time. She felt lonely, was unsafe living by herself and suffered from a number of health issues (Triple A, glaucoma & macular degeneration, limited mobility due to arthritis, constant falls, unable to keep herself or the apartment clean, make a drink etc). We had tried carers for 8 months but, as they could only gain access via us and Mum thought they were too expensive for what they did, she cancelled them. Mum is a functioning alcoholic and we had almost bi-monthly trips to A&E. As a first post, I’m afraid this is a lot of rambling but I think it is important to have some background

My husband and I helped care for Dad, diagnosed with vascular dementia in 2005, moving closer when his state of mind really deteriorated in 2010. Although my siblings initially said they would spend a weekend alternate months to assist and give us a break, that never happened (sister lives around 2-3 hours away, brother closer to 5 hours).

My husband did all the practical supporting (shopping, hospital trips, day trips, DIY) and I did sorted their finance and paperwork whilst working full time. We also took them both on holiday.

Dad eventually had to move into a Care home at the end of 2011 and passed away late 2012. Mum was OK for around 12 months with daily visits, us doing shopping, cleaning etc but said she felt lonely and asked if we could move in together. Although we tried to encourage her to move into a retirement apartment (onsite support, restaurant, shops & company), she refused, saying it was too expensive.

As neither property was big enough (we rent after losing our home and all our savings in the 2007 financial crash when our business went bust, Mum owned) we managed to find a large apartment that we could afford to buy for us all to move into. Mum didn’t like it, so we found somewhere else and continued renting.

Mum’s drinking had by now become a real issue – that, plus her limited mobility, continual falls, failing eyesight etc meant we could not leave her alone for extended periods. Our youngest daughter was in hospital through most of 2014 into 2015 so we travelled from Yorkshire to London each Saturday to spend time with her, having arranged with neighbours to be on hand for Mum.

We lost our daughter in 2015. Later the same year, Mum announced that where we lived was too big and she wanted to move into a smaller place and thought her own flat was still too big. We had a family meeting with siblings and agreed that my husband and I would move into Mum’s flat and we would rent a smaller one next door. This also meant that, as my husband was in his late 60s, Mum’s flat had to be disregarded in any financial calculations.

Sibling visits happened occasionally but mainly we still provided all the support. I had a breakdown early 2019 and social services finally started to begin the process of assessing Mum’s request to move into care full time. Arguments with the LA regarding the property disregard were left to me to resolve.

Summer last year Mum suffered an internal bleed which required surgery (due to her brandy intake) and she was moved into the care home of her choice for respite which became permanent. Her instructions regarding the contents of the flat etc were discussed within the family and both siblings came to help (anything not wanted by a family member was to go to a charity shop).

Everything was fine for around 6 months. Mum had a room with outside space so she could just step out to smoke, she thought the staff were fantastic and both siblings pleased with the home (we have visited almost 30 over the years for Dad, respite for Mum and then a permanent placement). The charity I work for is about 5 minutes away so a couple of times a week I'd take lunch to eat with her and visit again each weekend, take shopping etc. One sibling would also visit & stay with us until they had a meltdown around 6 months ago

Over the last 6 months Mum has changed rooms 3 times, complained that I dumped her there, sold all her goods and she wants to come home. One of my siblings takes everything Mum says as gospel and has actually attacked me both physically and verbally. My other sibling is only interested in how any changes will affect their inheritance.

Mum is considered to have fluctuating capacity (one call will be full of abuse and we need to leave her flat, a follow up call 30 minutes later to say she can’t thank us enough for all we do). I’m in my 60s, my husband in his 70s and I just feel that, having put our lives on hold for 10 years, we need some peace.

We have another social services assessment next month and an advocate will be allocated to Mum. There is no Power of Attorney in place although I am on all paperwork as next of kin. The advocate is necessary as 2 siblings don’t feel Mum could live alone but the third does. At the very least, she is currently safe, well cared for and her alcohol intake can be regulated.

Has anyone else had to muddle through in such a way? Although I am terrified of becoming homeless at my age my concern (and that of the care staff) remains that Mum is incapable of looking after herself (even with drop on carers) and, if left alone, would drink herself to death within weeks. The balance between her human right to make her own decisions and that of ensuring her safety and well-being is so tricky. One sibling tells Mum she should sell the flat (that we live in) and move out of care but we will be the ones who then have to be there when she falls, needs company on the next trip to A&E . . .

Any suggestions? I have tried burying my head in the sand but found it clogged my ears :)
It is patently clear that you have been through enough to warrant appropriate Assessment in the circumstances. By any standards you deserve such in order to progress decision making. I will say nothing more. But your detailed scenario yet again illustrates the varied and truly challenging complexities of this whole disposition, whether as Carer or guardian or family member.

With best wishes.
 

canary

Registered User
Feb 25, 2014
13,434
South coast
As an aside, do you know which home your mum wants to return to?

When mum moved into her care home she started saying that she wanted to go home, but soon it became very obvious that she was not talking about the bungalow that she had left (and I had sold to pay the care home fees), but her childhood home that had been bombed in the war!

Asking to "go home" is almost universal in dementia in the later stages, but it is not usually an actual place that they want - if I had been able to take mum back to her childhood home she would have been no happier and would have insisted that it wasnt her home at all! What "going home" represents is the desire to go somewhere where they can leave the confusion of dementia behind. Many people with dementia have no idea that they have changed - they are aware that Something Is Not Right, but think that it is everyone and everywhere else that is at fault. When I used to visit mum in her care home she would say "lets go - lets get out of this madhouse!" Im sure she thought that if she went somewhere else she would leave all the confusion behind, not realising that she would simply take it with her. Do you think that might be a similar thing going on which made your mum want to keep changing her room?
 

I can't fix it

New member
Jan 30, 2020
9
Hi Anxious Annie and thanks for your wishes. I don't feel I've been able to process it really as all my energy has been drained by Mum . . .

Yes, Mum owns this flat outright. She has always been very adamant that we have somewhere to live when she passes and has a codicil in her will that states her wishes are we rent my siblings percentage of ownership when she passes.

All of this was agreed as a family years ago – the vast bulk of caring for both parents fell on us and limited our housing options to the extent this was the only solution (so we could be totally on hand 24/7).

I’m at my wits end. I’ve agreed with the CH that I will bring in labelled mini-bottles of brandy (one for each day plus an emergency) to Mum can be ‘in charge’ of the amount she drinks – then find out my sister had been sending parcels of booze! A delivery was made one Wednesday afternoon and on Friday morning, the staff thought Mum had suffered a stroke as she was unable to walk (even with her walker) and was slurring her speech. Closer inspection was that she had drunk the equivalent of a bottle of brandy and 7 tins of G&T in less than 48 hours (regular occurrence when she limited at home which meant we had to dilute the gin and ‘forget’ to buy her brandy).

Mum is also going deaf (refuses to wear her hearing aids) losing her sight (keeps cancelling her hospital visits over the last 4 years) and, although she wanted t go into CH originally for company and stimulation, won’t go out of her room, get dressed and complains when staff try to encourage her to get involved.

I am trying to source an electric wheelchair to make her more mobile but am pretty sure it won’t get used (but she will still complain about being stuck in a ‘bedsit’).

So sorry to keep whinging – Mum’s insisted her best friend come to review CHs when she wanted to move but now states she never did that - we simply dumped her there and lied about it being temporary.

Not sure if Mum is even aware of the conflicting statements she makes or if they are deliberate fibs (she has always been a very negative and manipulative person) but she has no apparent interest / awareness of the impact her words are having. I am now totally estranged from my sister and only speak to my brother if I call him. We fulfilled Mum’s every wish over the years – now that her mental capacity is diminishing (how I wish someone would confirm her diagnosis) as well as her physical decline, all of that seems to have been forgotten by my siblings.

Not sure what the Best Interest meeting will turn up – I can only stay strong and say I can’t support her any further. I had a suspected stroke 4 years ago (downgraded to TIA and eventually diagnosed as hemiplegic migraines) and have to continue to work. If Mum gets her wish (today she has announced she wants to go into Extra Care accommodation as she is aware she needs 24/7 support and wants her meals delivered, her cleaning done, continued help with bathing etc but in her own place so she can please herself – basically she she just wants to drink and smoke in her own room) I’ve been told I will need to furnish as I sold all her possessions.

I’ve been speaking to the Admiral Nurses and reading about the ‘kind lies’ but I can’t even do that as my sister then ‘tells the truth’. I’ve been advised to ‘divorce’ both sister & Mum but it’s not so easy, particularly with regard to our living arrangements. The only way we can afford her top-up fees and the additional personal spending is by living here anyway.
Is it too late to put myself up for adoption, do you think :)
 

I can't fix it

New member
Jan 30, 2020
9
Wow – thanks all!

I agree about the going home statement – it does seem to be more about going back to a different time when Mum could go dancing and so on, rather than an actual place. Trouble is, my sister is encouraging her in this (and also suggesting Mum gets a kitten when she moves!). So totally impractical. Oh, and my brother suggested she comes home to live with us (aleardy done that for 3 years)

Mum will say she is losing her mind / memory but it is all due to ‘not being stimulated’ – but won’t join in with anything. She’s made some friends and then complains they just gossip. Every suggestion is met with a negative. I speak to the CH a few times each week (or have a catch-up when I am dropping things off) and it is obvious that the direness of Mum’s daily complaints does not tie in with what she actually does (gets her hair done when she says she not been out of her room for 2 weeks for example). She appears quite rational one minute then flips to making some really hurtful accusations (she did so to a degree before she became ill as well) and I just don’t now if it is the illness or deliberate.

Siblings are aware of this side of Mum but sister now just taking everything Mum says as true, regardless of how bizarre it sounds.

Neither sibling will support me with projecting a united front with Mum – making sure she gets the same message from us all even if it includes the ‘kind lies’ such as Doctor wants you to stay until you are fully fit kind of thing. Can only hope best interest meeting does result in that – her best interest which, in my opinion and that of the people who have actually been caring for her for the last 5 years, is that she is safest where she is.


Can only hope (oh look, a flying pig!)
 

canary

Registered User
Feb 25, 2014
13,434
South coast
So am I right in thinking that if she returned "home" she would be in the place that you are now living in? Would there be room for you all, or would this make you homeless?

I think that you are going to have to be very firm and say that you cannot look after her. You have tried caring for her and it was too much for you and now she needs more care, which you will not be able to provide. If you have to move out then you would not be in a position to be able to care for her anyway and I do think that you are going to have to stand your ground over this - there will probably be a lot of emotional blackmail.
 

I can't fix it

New member
Jan 30, 2020
9
The apartment here is not suitable – can’t fit us all in (2 beds but open plan living room / kitchen and my husband suffers from bronchitis so can’t smoke in the flat). The apartment is in a secure compound (access is only possible via intercom as locked gates) and the management committee refuse to allow a key safe to be put outside. When we had carers for Mum before, they could only gain access by buzzing us so, if she returned here, she wouldn’t be able to manage to let anyone in. And yes, we would be homeless.


Mum’s had her name down for sheltered accommodation for 5 years. There is a new development being built locally with special dementia apartments but, due to the Covid-19 pandemic, these won’t be ready now until next spring. I’d be happy to tell Mum that we are trying to get her in there (on a good day I can sell her the idea and she seems to like the thought of her own balcony etc) but then I’m back to my sister undermining any attempt at using such delaying tactics. Mum’s SW was keen for Mum to move into these apartments previously but Mum dismissed the idea saying she wanted the CH!

I should be used to emotional blackmail blackmail by now - when we went on holiday around 2 years ago, Mum threw such a major wobbly and said it was unfair for my sister to sacrifice all her holidays just so I could go away (sister said she'd come & stay as Mum didn't want to go into respite)
 

anxious annie

Registered User
Jan 2, 2019
442
Hi
I do feel for you, what a situation to be in.
You must stay strong at the meeting and say you are no longer able to help.
If they suggest a move back home, they would have to give you time to move out. Refuse to pay top up fees ( is this just you or other family members paying) Or are you already doing this?
If they suggest a move to extra care I don't think you should have to furnish it. Sounds like your mum would be a danger to herself at her flat or in extra care re the drinking.
Hoping SS see sense and mum stays in the current care home.
Suggest your sister takes sole care if she's not happy with mum being in the home!!
 

Jaded'n'faded

Registered User
Jan 23, 2019
909
High Peak
You sound like a saint to me - you have done so much for your mum and put up with so much in return.

I really hope SS see sense and your mum stays where she is. Fingers crossed for you.
 

I can't fix it

New member
Jan 30, 2020
9
Thanks AA

Previous suggestion that sister took over care resulted in the CH, the doctor, distruct nurse and mental health liaison all refusing to reply to deal with her. Her constant emails, texts and calls giving them instructions (I was used to be told what I should be doing and carrying on doing what I had been doing) alienated them all so it all bounced back to me anyway.

I refer to her as the Sainted One - can't do any wrong in Mum's eye and no-one can live up to her expectations! Even suggestioned over the years that (to Mum) that she move closer to blister but Mum refused saying she would be too far away from her friends. Same friends that she has refused to see in person for years. Husband and I are the only ones she will let visit (apart from siblings), even refusing to see our eldest when she came for the last 2 Christmas'.

We are the only ones paying the top up fees & subsidising LA allowance. Mum (after moving and rying 3 different rooms) wanted a garden room. I asked siblings for contributions (would cost an additional £800 pm) but both refused, saying I lived in Mum's flat blah blah blah. When Mum moved out, we had to decorate and recarpet the flat she had been in (suffered from double incontinence when under the infuence). We had to fund that cost as well (siblings said they would put in and we got £50 from my brother - total cost was circa £1,300). Wish I'd turned away after we lost Dad (he was still a gentleman and terrible flirt, even when bedridden and unable to feed himself or talk). I've made the area outside her room as bright and colourful as possible (plants, table & chairs) and, as she wouldn't be able to smoke in the communal garden anyway, I don't think the move would have made her any happier in the long run. The Sainted One does pay for her phone

Do you know if we should expect a call from Mum's advocate ahead of the best interest meeting? Not sure if they get background first.
 

Banjomansmate

Registered User
Jan 13, 2019
2,114
Dorset
Your Mum will have an Independent Advocate who, as far as I know, will only speak with your Mum and put her side of the story forward. Even though her decision could be ludicrous they represent your Mum.
The Banjoman had to have an Independent Advocate when he was refusing to move from hospital to residential care even though everyone at the Best Interest meeting had agreed that that was what he needed as he was unsafe at home. Thankfully we had just about convinced him that the care home was OK before the IA went to see him.
 

Marie 67

Registered User
Jul 25, 2020
38
Hello everyone

My Mum has not been formally diagnosed (has been refusing to attend the memory clinic for over 4 years) but a home visit scored her low enough to indicate our concerns are valid.

December 2018 Mum said she wanted to move into a care home that she had previously stayed at full time. She felt lonely, was unsafe living by herself and suffered from a number of health issues (Triple A, glaucoma & macular degeneration, limited mobility due to arthritis, constant falls, unable to keep herself or the apartment clean, make a drink etc). We had tried carers for 8 months but, as they could only gain access via us and Mum thought they were too expensive for what they did, she cancelled them. Mum is a functioning alcoholic and we had almost bi-monthly trips to A&E. As a first post, I’m afraid this is a lot of rambling but I think it is important to have some background

My husband and I helped care for Dad, diagnosed with vascular dementia in 2005, moving closer when his state of mind really deteriorated in 2010. Although my siblings initially said they would spend a weekend alternate months to assist and give us a break, that never happened (sister lives around 2-3 hours away, brother closer to 5 hours).

My husband did all the practical supporting (shopping, hospital trips, day trips, DIY) and I did sorted their finance and paperwork whilst working full time. We also took them both on holiday.

Dad eventually had to move into a Care home at the end of 2011 and passed away late 2012. Mum was OK for around 12 months with daily visits, us doing shopping, cleaning etc but said she felt lonely and asked if we could move in together. Although we tried to encourage her to move into a retirement apartment (onsite support, restaurant, shops & company), she refused, saying it was too expensive.

As neither property was big enough (we rent after losing our home and all our savings in the 2007 financial crash when our business went bust, Mum owned) we managed to find a large apartment that we could afford to buy for us all to move into. Mum didn’t like it, so we found somewhere else and continued renting.

Mum’s drinking had by now become a real issue – that, plus her limited mobility, continual falls, failing eyesight etc meant we could not leave her alone for extended periods. Our youngest daughter was in hospital through most of 2014 into 2015 so we travelled from Yorkshire to London each Saturday to spend time with her, having arranged with neighbours to be on hand for Mum.

We lost our daughter in 2015. Later the same year, Mum announced that where we lived was too big and she wanted to move into a smaller place and thought her own flat was still too big. We had a family meeting with siblings and agreed that my husband and I would move into Mum’s flat and we would rent a smaller one next door. This also meant that, as my husband was in his late 60s, Mum’s flat had to be disregarded in any financial calculations.

Sibling visits happened occasionally but mainly we still provided all the support. I had a breakdown early 2019 and social services finally started to begin the process of assessing Mum’s request to move into care full time. Arguments with the LA regarding the property disregard were left to me to resolve.

Summer last year Mum suffered an internal bleed which required surgery (due to her brandy intake) and she was moved into the care home of her choice for respite which became permanent. Her instructions regarding the contents of the flat etc were discussed within the family and both siblings came to help (anything not wanted by a family member was to go to a charity shop).

Everything was fine for around 6 months. Mum had a room with outside space so she could just step out to smoke, she thought the staff were fantastic and both siblings pleased with the home (we have visited almost 30 over the years for Dad, respite for Mum and then a permanent placement). The charity I work for is about 5 minutes away so a couple of times a week I'd take lunch to eat with her and visit again each weekend, take shopping etc. One sibling would also visit & stay with us until they had a meltdown around 6 months ago

Over the last 6 months Mum has changed rooms 3 times, complained that I dumped her there, sold all her goods and she wants to come home. One of my siblings takes everything Mum says as gospel and has actually attacked me both physically and verbally. My other sibling is only interested in how any changes will affect their inheritance.

Mum is considered to have fluctuating capacity (one call will be full of abuse and we need to leave her flat, a follow up call 30 minutes later to say she can’t thank us enough for all we do). I’m in my 60s, my husband in his 70s and I just feel that, having put our lives on hold for 10 years, we need some peace.

We have another social services assessment next month and an advocate will be allocated to Mum. There is no Power of Attorney in place although I am on all paperwork as next of kin. The advocate is necessary as 2 siblings don’t feel Mum could live alone but the third does. At the very least, she is currently safe, well cared for and her alcohol intake can be regulated.

Has anyone else had to muddle through in such a way? Although I am terrified of becoming homeless at my age my concern (and that of the care staff) remains that Mum is incapable of looking after herself (even with drop on carers) and, if left alone, would drink herself to death within weeks. The balance between her human right to make her own decisions and that of ensuring her safety and well-being is so tricky. One sibling tells Mum she should sell the flat (that we live in) and move out of care but we will be the ones who then have to be there when she falls, needs company on the next trip to A&E . . .

Any suggestions? I have tried burying my head in the sand but found it clogged my ears :)
Advocate is a good idea in theory I've applied for one if even had power of attorney in place if she lives with you well can believe that all about money with family's inheritance if lost capacity you can't apply for one as do n er has to sign it if none the siblings can't force it on her to be honest she has rights is protected not just human rights by others the advocate will speak for her doubt theyl move her in them circumstances either .
 

Baker17

Registered User
Mar 9, 2016
722
Thanks AA

Previous suggestion that sister took over care resulted in the CH, the doctor, distruct nurse and mental health liaison all refusing to reply to deal with her. Her constant emails, texts and calls giving them instructions (I was used to be told what I should be doing and carrying on doing what I had been doing) alienated them all so it all bounced back to me anyway.

I refer to her as the Sainted One - can't do any wrong in Mum's eye and no-one can live up to her expectations! Even suggestioned over the years that (to Mum) that she move closer to blister but Mum refused saying she would be too far away from her friends. Same friends that she has refused to see in person for years. Husband and I are the only ones she will let visit (apart from siblings), even refusing to see our eldest when she came for the last 2 Christmas'.

We are the only ones paying the top up fees & subsidising LA allowance. Mum (after moving and rying 3 different rooms) wanted a garden room. I asked siblings for contributions (would cost an additional £800 pm) but both refused, saying I lived in Mum's flat blah blah blah. When Mum moved out, we had to decorate and recarpet the flat she had been in (suffered from double incontinence when under the infuence). We had to fund that cost as well (siblings said they would put in and we got £50 from my brother - total cost was circa £1,300). Wish I'd turned away after we lost Dad (he was still a gentleman and terrible flirt, even when bedridden and unable to feed himself or talk). I've made the area outside her room as bright and colourful as possible (plants, table & chairs) and, as she wouldn't be able to smoke in the communal garden anyway, I don't think the move would have made her any happier in the long run. The Sainted One does pay for her phone

Do you know if we should expect a call from Mum's advocate ahead of the best interest meeting? Not sure if they get background first.
@ I can’t fix it my husband was appointed an advocate as banjomansmate has also said the advocate will only speak to your mother. She went along with his wishes even though he didn’t have capacity. The decision was the wrong thing for him but he didn’t and still doesn’t understand, it’s been heartbreaking for me to stand by and see this but even when it ended up in the COP the judge upheld her decision.
I really hope you get the care that your mother clearly needs.
 

I can't fix it

New member
Jan 30, 2020
9
Blimey - that's exactly what I worry about - that the advocate will listen to Mum's version of what she wants at that time and implement it. The fact that Mum keeps changing her mind (several times) and has no concept of how she will cope (all my meals will be delivered) scares the living poo out of me. My husband thinks that I will bow to the pressure of looking after Mum again if she moves out say any suggestions on how to keep the guilt monster in chains would be gratefully received :eek:
 

Marie 67

Registered User
Jul 25, 2020
38
Hello everyone

My Mum has not been formally diagnosed (has been refusing to attend the memory clinic for over 4 years) but a home visit scored her low enough to indicate our concerns are valid.

December 2018 Mum said she wanted to move into a care home that she had previously stayed at full time. She felt lonely, was unsafe living by herself and suffered from a number of health issues (Triple A, glaucoma & macular degeneration, limited mobility due to arthritis, constant falls, unable to keep herself or the apartment clean, make a drink etc). We had tried carers for 8 months but, as they could only gain access via us and Mum thought they were too expensive for what they did, she cancelled them. Mum is a functioning alcoholic and we had almost bi-monthly trips to A&E. As a first post, I’m afraid this is a lot of rambling but I think it is important to have some background

My husband and I helped care for Dad, diagnosed with vascular dementia in 2005, moving closer when his state of mind really deteriorated in 2010. Although my siblings initially said they would spend a weekend alternate months to assist and give us a break, that never happened (sister lives around 2-3 hours away, brother closer to 5 hours).

My husband did all the practical supporting (shopping, hospital trips, day trips, DIY) and I did sorted their finance and paperwork whilst working full time. We also took them both on holiday.

Dad eventually had to move into a Care home at the end of 2011 and passed away late 2012. Mum was OK for around 12 months with daily visits, us doing shopping, cleaning etc but said she felt lonely and asked if we could move in together. Although we tried to encourage her to move into a retirement apartment (onsite support, restaurant, shops & company), she refused, saying it was too expensive.

As neither property was big enough (we rent after losing our home and all our savings in the 2007 financial crash when our business went bust, Mum owned) we managed to find a large apartment that we could afford to buy for us all to move into. Mum didn’t like it, so we found somewhere else and continued renting.

Mum’s drinking had by now become a real issue – that, plus her limited mobility, continual falls, failing eyesight etc meant we could not leave her alone for extended periods. Our youngest daughter was in hospital through most of 2014 into 2015 so we travelled from Yorkshire to London each Saturday to spend time with her, having arranged with neighbours to be on hand for Mum.

We lost our daughter in 2015. Later the same year, Mum announced that where we lived was too big and she wanted to move into a smaller place and thought her own flat was still too big. We had a family meeting with siblings and agreed that my husband and I would move into Mum’s flat and we would rent a smaller one next door. This also meant that, as my husband was in his late 60s, Mum’s flat had to be disregarded in any financial calculations.

Sibling visits happened occasionally but mainly we still provided all the support. I had a breakdown early 2019 and social services finally started to begin the process of assessing Mum’s request to move into care full time. Arguments with the LA regarding the property disregard were left to me to resolve.

Summer last year Mum suffered an internal bleed which required surgery (due to her brandy intake) and she was moved into the care home of her choice for respite which became permanent. Her instructions regarding the contents of the flat etc were discussed within the family and both siblings came to help (anything not wanted by a family member was to go to a charity shop).

Everything was fine for around 6 months. Mum had a room with outside space so she could just step out to smoke, she thought the staff were fantastic and both siblings pleased with the home (we have visited almost 30 over the years for Dad, respite for Mum and then a permanent placement). The charity I work for is about 5 minutes away so a couple of times a week I'd take lunch to eat with her and visit again each weekend, take shopping etc. One sibling would also visit & stay with us until they had a meltdown around 6 months ago

Over the last 6 months Mum has changed rooms 3 times, complained that I dumped her there, sold all her goods and she wants to come home. One of my siblings takes everything Mum says as gospel and has actually attacked me both physically and verbally. My other sibling is only interested in how any changes will affect their inheritance.

Mum is considered to have fluctuating capacity (one call will be full of abuse and we need to leave her flat, a follow up call 30 minutes later to say she can’t thank us enough for all we do). I’m in my 60s, my husband in his 70s and I just feel that, having put our lives on hold for 10 years, we need some peace.

We have another social services assessment next month and an advocate will be allocated to Mum. There is no Power of Attorney in place although I am on all paperwork as next of kin. The advocate is necessary as 2 siblings don’t feel Mum could live alone but the third does. At the very least, she is currently safe, well cared for and her alcohol intake can be regulated.

Has anyone else had to muddle through in such a way? Although I am terrified of becoming homeless at my age my concern (and that of the care staff) remains that Mum is incapable of looking after herself (even with drop on carers) and, if left alone, would drink herself to death within weeks. The balance between her human right to make her own decisions and that of ensuring her safety and well-being is so tricky. One sibling tells Mum she should sell the flat (that we live in) and move out of care but we will be the ones who then have to be there when she falls, needs company on the next trip to A&E . . .

Any suggestions? I have tried burying my head in the sand but found it clogged my ears :)
Be
Thanks AA

Previous suggestion that sister took over care resulted in the CH, the doctor, distruct nurse and mental health liaison all refusing to reply to deal with her. Her constant emails, texts and calls giving them instructions (I was used to be told what I should be doing and carrying on doing what I had been doing) alienated them all so it all bounced back to me anyway.

I refer to her as the Sainted One - can't do any wrong in Mum's eye and no-one can live up to her expectations! Even suggestioned over the years that (to Mum) that she move closer to blister but Mum refused saying she would be too far away from her friends. Same friends that she has refused to see in person for years. Husband and I are the only ones she will let visit (apart from siblings), even refusing to see our eldest when she came for the last 2 Christmas'.

We are the only ones paying the top up fees & subsidising LA allowance. Mum (after moving and rying 3 different rooms) wanted a garden room. I asked siblings for contributions (would cost an additional £800 pm) but both refused, saying I lived in Mum's flat blah blah blah. When Mum moved out, we had to decorate and recarpet the flat she had been in (suffered from double incontinence when under the infuence). We had to fund that cost as well (siblings said they would put in and we got £50 from my brother - total cost was circa £1,300). Wish I'd turned away after we lost Dad (he was still a gentleman and terrible flirt, even when bedridden and unable to feed himself or talk). I've made the area outside her room as bright and colourful as possible (plants, table & chairs) and, as she wouldn't be able to smoke in the communal garden anyway, I don't think the move would have made her any happier in the long run. The Sainted One does pay for her phone

Do you know if we should expect a call from Mum's advocate ahead of the best interest meeting? Not sure if they get background first.
they only communicate with you're mother no one else sorry advocate is it IMCA advocate but still the same I'm afraid .
 

canary

Registered User
Feb 25, 2014
13,434
South coast
My husband thinks that I will bow to the pressure of looking after Mum again if she moves out say any suggestions on how to keep the guilt monster in chains would be gratefully received
Just keep saying that if your mum moves back home, then you will have to move out and will then be unable to provide care.

Do try and find out where she thinks her home is - if she wants to move somewhere that is simply not possible, then that is a strong point in favour of her staying in the care home.