Advice needed re care package for Mum

[istherelight?]

Hi everybody, from a very new member.

My Mum (91) was formally diagnosed (eventually!) with Alzheimer's and vascular dementia two years ago. She has managed quite well at home with a lot of help from me (I live 25 miles away), her neighbour and her "gentleman friend". Her deterioration has been gradual - she cannot cook, or use appliances, has little short-term memory and is often afraid - but I couldn't force her to have paid care ("there's nothing wrong with me").

Three weeks ago she suddenly deteriorated and started turning up at the neighbour's house, early in the morning (THREE mornings in a row) with no explanation. When they called me, she didn't know who I was and was talking about people having a party in her house all night. She said she was in pain and said she had fallen in the garden (I have no idea if this was true). After two visits to the doctor she was taken to hospital for an x-ray. Nothing was found and she seemed to forget the pain. At which point I told Social Services that I could not cope and that I did not consider she was safe at home because of the wandering.

She is still in hospital while a care package is organised. This has not been helped by a weird mental capacity test, where she was unable to make any decision about her future care, yet was deemed to have capacity to do so. The hospital want to discharge her with a package that does not cover the nights but I have found a lovely care home near me where I think she would be happy. I can't imagine how she will cope with strangers visiting her four times a day and I'm not even sure she will recognise her own house. I don't know where to turn! After nearly four years of trying to care for her, I am exhausted and don't feel I can provide the level of care that would still be needed if Mum does not go into residential care.

 

[KatieRich]

We had same with my dad. My mum just could not cope anymore. A friend of ours advised to refuse to take him home as he would be at risk. Social services in the hospital interviewed my mum & myself . I told her how bad it had got and mum said she was shattered and couldn't do it anymore. The got him into a assessment bed straight away in a local care home. Meanwhile I was looking at care homes. The assessment told SS that he needed 24 hour care and we eventually got him into a care home of our choice. SS will always jump at the chance of a care package first but you have to be insistent with them. They can't discharge her without your support x

 

[Shedrech]

hello istherelight?
a warm welcome to TP, where I hope you'll discover that yes, there is some light to be shed on your situation and there is light at the end of the tunnel
I'm wondering whether you (or someone) have Powers of Attorney for your mum (financial & property and health & welfare); if these are in place, you may have more sway over what happens, even if there is some idea that she has some capacity - since some medic says she has some capacity, you may be able to have her say that she wants you as her Attorney to have this decision and to make arrangements
I'm also wondering whether your mum's home is her own property, and how much savings and income she has - you don't need to write it out here - if her assets total over £23,000 she will be expected to self-fund her care fees - if there isn't money immediately available, that can be dealt with (talk with the care home manager)
you say you have found her a lovely care home - hopefully it is a dementia care home - are they able to assess your mum and take her very soon ie is there a place immediately available?
assuming all the above is in place (but make sure), personally, I'd tell the hospital team that you are more than happy for your mum to be discharged to the care home you have organised - but you will not have anything to do with a discharge back to her own property where she will immediately become 'a vulnerable adult', even with 4 home care visits during the daytime, an OT to advise on aids for her mobility, an alarm system for her wandering and day care every day of the working week; she will be 'at risk' most of the day and during the night; that you are aware the LA have 'a duty of care' to ensure your mum's safeguarding; and that you greatly fear your mum will become a failed discharge and be back in hospital within days - hopefully that should get their attention
if you don't have POAs and your mum's care is funded by the Local Authority, you may have to accept what is offered, but still make clear your opposition, and say you believe she should at least be initially discharged to an assessment unit to be monitored - harsh as it may sound, also make clear that you can have no part in her care as you are not local
keep posting here and ask anything that's on your mind - someone will have ideas for you
best wishes
PS was your mum checked for a Urinary Tract Infection on admission? - infections of any kind can cause havoc, as you probably already know

 

[istherelight?]

hello istherelight?
a warm welcome to TP, where I hope you'll discover that yes, there is some light to be shed on your situation and there is light at the end of the tunnel
I'm wondering whether you (or someone) have Powers of Attorney for your mum (financial & property and health & welfare); if these are in place, you may have more sway over what happens, even if there is some idea that she has some capacity - since some medic says she has some capacity, you may be able to have her say that she wants you as her Attorney to have this decision and to make arrangements
I'm also wondering whether your mum's home is her own property, and how much savings and income she has - you don't need to write it out here - if her assets total over £23,000 she will be expected to self-fund her care fees - if there isn't money immediately available, that can be dealt with (talk with the care home manager)
you say you have found her a lovely care home - hopefully it is a dementia care home - are they able to assess your mum and take her very soon ie is there a place immediately available?
assuming all the above is in place (but make sure), personally, I'd tell the hospital team that you are more than happy for your mum to be discharged to the care home you have organised - but you will not have anything to do with a discharge back to her own property where she will immediately become 'a vulnerable adult', even with 4 home care visits during the daytime, an OT to advise on aids for her mobility, an alarm system for her wandering and day care every day of the working week; she will be 'at risk' most of the day and during the night; that you are aware the LA have 'a duty of care' to ensure your mum's safeguarding; and that you greatly fear your mum will become a failed discharge and be back in hospital within days - hopefully that should get their attention
if you don't have POAs and your mum's care is funded by the Local Authority, you may have to accept what is offered, but still make clear your opposition, and say you believe she should at least be initially discharged to an assessment unit to be monitored - harsh as it may sound, also make clear that you can have no part in her care as you are not local
keep posting here and ask anything that's on your mind - someone will have ideas for you
best wishes
PS was your mum checked for a Urinary Tract Infection on admission? - infections of any kind can cause havoc, as you probably already know

Thank you, Shedrech, and all of you for your responses. I have felt very alone (despite supportive family) and have been quite traumatised by the hospital "goings on". Your advice has given me confidence to push things with the care home (see below) and not let myself be bullied by the hospital. I have already refused to allow Mum's discharge until I know she will be safe.

On the health front, Mum does not have a UTI and is physically well. In fact, regular food in hospital agrees with her (though she denies they feed her).

I do have POA but only for financial affairs (oh, what hindsight shows you!) and Mum will be self-funding, with the funds already in place. The home I have found has a specialist dementia care unit and a dementia nursing unit, so hopefully Mum would not have to move elsewhere when her condition worsens. CQC reports were "Good" and the home had a lovely feel. Plus it is ten minutes from me, not the fifty minutes I have been faced with for the last four years. They have a room available immediately and, following conversations with them, are going to assess Mum in hospital tomorrow.

I so hope this works out and that Mum doesn't do something unpredictable. I say this because her mental capacity assessment was bizarre, including the doctor asking her if she a) wanted to go home with carers four times a day or b) go into a residential home, to which Mum replied that she'd like to live in a b&b near me. She was assessed as being mentally competent.... Please wish us luck.

 

[KatieRich]

hello istherelight?
a warm welcome to TP, where I hope you'll discover that yes, there is some light to be shed on your situation and there is light at the end of the tunnel
I'm wondering whether you (or someone) have Powers of Attorney for your mum (financial & property and health & welfare); if these are in place, you may have more sway over what happens, even if there is some idea that she has some capacity - since some medic says she has some capacity, you may be able to have her say that she wants you as her Attorney to have this decision and to make arrangements
I'm also wondering whether your mum's home is her own property, and how much savings and income she has - you don't need to write it out here - if her assets total over £23,000 she will be expected to self-fund her care fees - if there isn't money immediately available, that can be dealt with (talk with the care home manager)
you say you have found her a lovely care home - hopefully it is a dementia care home - are they able to assess your mum and take her very soon ie is there a place immediately available?
assuming all the above is in place (but make sure), personally, I'd tell the hospital team that you are more than happy for your mum to be discharged to the care home you have organised - but you will not have anything to do with a discharge back to her own property where she will immediately become 'a vulnerable adult', even with 4 home care visits during the daytime, an OT to advise on aids for her mobility, an alarm system for her wandering and day care every day of the working week; she will be 'at risk' most of the day and during the night; that you are aware the LA have 'a duty of care' to ensure your mum's safeguarding; and that you greatly fear your mum will become a failed discharge and be back in hospital within days - hopefully that should get their attention
if you don't have POAs and your mum's care is funded by the Local Authority, you may have to accept what is offered, but still make clear your opposition, and say you believe she should at least be initially discharged to an assessment unit to be monitored - harsh as it may sound, also make clear that you can have no part in her care as you are not local
keep posting here and ask anything that's on your mind - someone will have ideas for you
best wishes
PS was your mum checked for a Urinary Tract Infection on admission? - infections of any kind can cause havoc, as you probably already know

Shedrech your posts are so informative and so much help to us on here. I can only post my own limited experiences but your posts are full of everything that people need to know. I thank you because people like you make this distressful experience easier to bare. X

 

[Slugsta]

Hi istherelight,

I have been in a similar position recently, so I do understand how very stressful and upsetting it is. I am sending you some virtual (((hugs))).

As your mother will be self-funding, you should be able to mover her without SS involvement - that will certainly make things easier!

I was told that Mum would be asked where she wanted to go, even if it was agreed that she did not have capacity to make the decision, and her wishes acceded to! 'Fortunately' Mum stopped walking completely almost overnight and now needs a hoist + 2 people to move. So all talk of having to do what Mum wanted went out of the window as it would now be more expensive to send her home than a Care Home!

 

[istherelight?]

Hi Slugsta

Mum now in the care home I chose, thanks to an excellent care home manager and LUCK. Like you, I was told that her wishes would be actioned. NHS Continuing Healthcare assessment said she was mentally competent and could choose to go home with care 4 times a day or to go into a care home. She had no idea what that meant, but was keen to live in a "little flat" near me. The day before discharge, when everything was arranged, a Social Worker finally appeared to ask her if she really, really wanted to go into a home and was she happy to pay for it? Mum came up with the right answer, thank Heavens. Interestingly the Mental Capacity Act 2005 assessment said she lacked capacity (which even a child could see is the case). My wishes were ignored throughout, so good on Mum, and great that as self-funders we were able to get her to the place she so needed....and she loves her new "flat".


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[missmole]

Hi Slugsta

Mum now in the care home I chose, thanks to an excellent care home manager and LUCK. Like you, I was told that her wishes would be actioned. NHS Continuing Healthcare assessment said she was mentally competent and could choose to go home with care 4 times a day or to go into a care home. She had no idea what that meant, but was keen to live in a "little flat" near me. The day before discharge, when everything was arranged, a Social Worker finally appeared to ask her if she really, really wanted to go into a home and was she happy to pay for it? Mum came up with the right answer, thank Heavens. Interestingly the Mental Capacity Act 2005 assessment said she lacked capacity (which even a child could see is the case). My wishes were ignored throughout, so good on Mum, and great that as self-funders we were able to get her to the place she so needed....and she loves her new "flat".


Sent from my iPad using Talking Point

So pleased it has worked out for you and your mum after what sounds a nightmare situation. Like you, I live about 25 miles away from my mum who has been managing at home and refusing care until very recently when I insisted on carers to make her lunch on the days I can't visit. And like your mum, she recently started doing odd things like turning up at her neighbours at 8am, locking herself out of the house and being found by the paperboy, wandering up the road leaving the front door wide open etc. I know exactly what you've been going through. It is so unbelievably stressful and I do find my mother very difficult and frustrating to deal with even though it's not her fault of course. A live-in carer is starting on Monday. She won't like it but she really isn't safe to be on her own at all. I hope things continue to work out for your mum and for you.

 

[istherelight?]

Thank you so much, missmole. And I hope things work out for you and your Mum too. Dementia is such a tough disease for everyone.


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