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Desperate for advice on my family's situation!

Claireyeddy

Registered User
Sep 21, 2020
35
Hello there!

I'm really relieved to find this forum :) I've been looking through some of the expert Q&As but havent found anything to help with our particular situation as of yet.

It regards my grandmother, who is rapidly declining in her mental capacity. She lives alone, about 100 yards from our house, and my parents and myself are trying to care for her full time between us as she has not been diagnosed just yet although it is clear she is suffering with a form of Alzheimar's.

She has already had the necessary blood tests, the 'addenbrooke's' cognitive assessment and a CT scan on her brain, the results of which are being held at a unit within the local hospital, who are not prepared to discuss these over the phone with us. The unit is also months behind, presumably due to COVID although this has been going on since long before lockdown. However in the meantime my nan is becoming less and less able, and we are stretched in how we can help her medically.

Here's the frustration: my dad and uncle are appointed as POAs, however, when my nan set these up she requested that these only come into force as and when she is deemed incapacitated, i.e. unable to make her own decisions. She is clearly at that stage, and the addenbrookes exam certainly confirmed this, however the doctor has point blank refused to perform a capacity test (as apparently they 'aren't doing these' at the moment) and they suggested a solicitor do the assessment instead. Has anyone heard of this? Our solicitor definitely hadn'! With my nan becoming increasingly more confused she is refusing private carers, because she is happy with us coming in and out - something that isn't feasible nor providing her with the level of care that she needs. We therefore cannot put professional care in place (even though it's in her best interests) as we have no way of activating the POAs, paying for it, or overriding her wishes in regards to health.

We feel as though we are currently being pushed round in circles, and the person being the most negatively impacted is my grandmother. Has anyone been in a similar situation? Are there any other routes that we can try in order to obtain this assessment to give us the ability to get the care in place that she desperately needs? We're all trying our best for her but it's not enough to keep her healthy and we are concerned that if we cannot find a resolution soon she will start to suffer more than she already is.

Any suggestions are greatly appreciated! x
 

Just me

Registered User
Nov 17, 2013
488
Hi @Claireyeddy and welcome to DTP

I’ve recently looked at the capacity route, Adult Social Services said they didn’t do it (since been told they do) and the best people were the memory clinic or her GP as they'd know her best.

I contacted the GP and they were going to assist.

I’ve not asked for their involvement at the moment but it may be worth you contacting her GP to see if they can help.

It must be so frustrating for you and your family when all you are trying to do is help but unfortunately when the person with dementia refuses help and capacity is involved it becomes so much harder.
 

Claireyeddy

Registered User
Sep 21, 2020
35
Hi @Claireyeddy and welcome to DTP

I’ve recently looked at the capacity route, Adult Social Services said they didn’t do it (since been told they do) and the best people were the memory clinic or her GP as they'd know her best.

I contacted the GP and they were going to assist.

I’ve not asked for their involvement at the moment but it may be worth you contacting her GP to see if they can help.

It must be so frustrating for you and your family when all you are trying to do is help but unfortunately when the person with dementia refuses help and capacity is involved it becomes so much harder.
Thankyou for this. Sadly the GP have said they aren't doing capacity assessments currently (for what reason, we don't know) despite them being fully aware of her case and the increasing need to get sufficient care in place. We have had a lot of problems with them in truth... but that's another story! :rolleyes::)
 

Claireyeddy

Registered User
Sep 21, 2020
35
My mothers long term friend signed that My mother had lost capasity- she'd seen the decline and was perfectly happy to witness the fact.
Thanks so much for your reply! Does it not have to be a medical professional who performs a capacity assessment? That's the impression we are under. The only alternative we do have is if she hands over the POA authority of her own accord, but ethically, if we know she doesn't have capacity, I'm not sure how this would work either!
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,415
Yorkshire
hello @Claireyeddy
a warm welcome to DTP

just some thoughts

have you contacted your Local Authority Adult Services to arrange an assessment of your grandmother's care needs ... you can do this yourselves, it doesn't have to be your grandmother who contacts them ... given your circumstances, you might be able to request a Best Intetests meeting and any decision from that overrides your grandmother's .... though it can still be difficult if she actively refuses to co-operate

it could be that a Social Worker can/will deem your grandmother to no longer have capacity

if the hospital unit will not discuss anything with you, they do have to speak with the patient themselves, so is it possible to phone them, have your grandmother say something eg I want to know my results or tell me what you found or I give permission to speak to (a name) .... have the phone on speaker so you can all hear and someone can make notes

maybe type up a letter to the manager of the unit from your grandmother stating that she gives her permission for an Attorney to act on her behalf, so they have her permission to ask questions and for all info to be shared and discuxsed ... maybe do the same to her GP ... the unit should be passing on their findings to her GP who may share with you and contact them ... any adult can give permission for info to be shared but medics act under patient confidentiality so don't share without permission

do the LPA documents state that loss of capacity has to be proved/evidenced ... or simply that they don't come onto effect until there is loss of capacity, in which case the Attorneys themselves can make that decision when they sincerely believe there is no longer capacity

if the unit have evidence that your grandmother no longer has capacity (you seem to suggest this), point out to them that withholding information from her Attorneys is effectively withholding it from her herself as you are now acting legally on her behalf .... however, since they are refusing to speak with anyone but her, it may be that actually they still consider her to have capacity
 

Just me

Registered User
Nov 17, 2013
488
My mothers long term friend signed that My mother had lost capasity- she'd seen the decline and was perfectly happy
Thanks so much for your reply! Does it not have to be a medical professional who performs a capacity assessment? That's the impression we are under. The only alternative we do have is if she hands over the POA authority of her own accord, but ethically, if we know she doesn't have capacity, I'm not sure how this would work either!
That’s my understanding too
 

Claireyeddy

Registered User
Sep 21, 2020
35
hello @Claireyeddy
a warm welcome to DTP

just some thoughts

have you contacted your Local Authority Adult Services to arrange an assessment of your grandmother's care needs ... you can do this yourselves, it doesn't have to be your grandmother who contacts them ... given your circumstances, you might be able to request a Best Intetests meeting and any decision from that overrides your grandmother's .... though it can still be difficult if she actively refuses to co-operate

it could be that a Social Worker can/will deem your grandmother to no longer have capacity

if the hospital unit will not discuss anything with you, they do have to speak with the patient themselves, so is it possible to phone them, have your grandmother say something eg I want to know my results or tell me what you found or I give permission to speak to (a name) .... have the phone on speaker so you can all hear and someone can make notes

maybe type up a letter to the manager of the unit from your grandmother stating that she gives her permission for an Attorney to act on her behalf, so they have her permission to ask questions and for all info to be shared and discuxsed ... maybe do the same to her GP ... the unit should be passing on their findings to her GP who may shafe with you and contact them

do the LPA documents state that loss of capacity has to be proved/evidenced ... or simply that they don't come onto effect until there is loss of capacity, in which case the Attorneys themselves can make that decision when they sincerely believe there is no longer capacity

if the unit have evidence that your grandmother no longer has capacity (you seem to suggest this), point out to them that withholding information from her Attorneys is effectively withholding it from her herself as you are now acting legally on her behalf .... however, since they are refusing to speak with anyone but her, it may be that actually they still consider her to have capacity
Wow thankyou so much for your reply! I am going to relay all of this to my Dad. I know we have had the Local Authority round for a needs assessment, and she completely refused any help or support from them despite it being in her best interests and obviously we couldn't override this. It's worth us asking them if they can perform a capacity assessment though.

It's also a great idea getting my nan to request her results herself. She would have the physical ability to give my Dad permission to speak (although how much she understands of this is debatable). But we think the issue is that the results haven't even been interpreted yet. I think my Dad will attempt this though as it may push them a bit further along.

It's such a mess and very frustrating as all we want to be able to do is get her the appropriate care! It doesn't help that she has always been quite a difficult lady, even prior to her mental health decline, and so this is coming out even more so now!
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,003
High Peak
Could you hire an independent social worker to assess your gran's capacity? You'd have to pay initially but if it gets the LPA sorted out you could recover the money from grandmother's funds.
 

Jessbow

Registered User
Mar 1, 2013
3,119
West Hertfordshire
Mum had the capasity assesment by the usual route. deemed to have lewy body.

Her friend long term friend signed the POA witnessing the fact that she'd lost capasity, and that the POA should come into play.

The OPG processed it and everything was fine.

If her friend wasn't qualified to witness, no one ever questioned it.

Surely the Addenbrooks result is all you need?
 

Claireyeddy

Registered User
Sep 21, 2020
35
Could you hire an independent social worker to assess your gran's capacity? You'd have to pay initially but if it gets the LPA sorted out you could recover the money from grandmother's funds.
That's also a possibility. Are there people that provide this service though? I wouldn't know where to start! The solicitor did suggest that if a legal professional gets involved this is exactly what they would do, and simply act as the intermediary.
 

Claireyeddy

Registered User
Sep 21, 2020
35
Mum had the capasity assesment by the usual route. deemed to have lewy body.

Her friend long term friend signed the POA witnessing the fact that she'd lost capasity, and that the POA should come into play.

The OPG processed it and everything was fine.

If her friend wasn't qualified to witness, no one ever questioned it.

Surely the Addenbrooks result is all you need?
Thankyou for this, it's really interesting as we have never heard of this route!

Apparently not, no. The Addenbrooks result isn't enough necessarily for the solicitor, as it's not her place to determine that the result deems no capacity, if that makes sense. We are under the impression that, even if obvious, a medical person needs to interpret that and essentially declare it. I have relayed this to my Dad though!
 

MaNaAk

Registered User
Jun 19, 2016
2,973
Essex
Dad never had any capacity test and I remember him being relieved when I took over his finances. Also your dad and uncle are going to have to tell your nan a few love lies in order to get her the care she needs.

MaNaAk
 

Claireyeddy

Registered User
Sep 21, 2020
35
Dad never had any capacity test and I remember him being relieved when I took over his finances. Also your dad and uncle are going to have to tell your nan a few love lies in order to get her the care she needs.

MaNaAk
That's the difference between your Dad and my Nan... she set her POAs up completely differently and is quite a controlling person by nature! That's why she needs a capacity test, without it, we cannot use the POAs to obtain care. Hoodwinking her is an option, but morally not the correct one so we're trying to avoid that if we can. We're hoping that we can find a solution that speeds up the process in the right way. It's all very confusing and were definitely being pushed from pillar to post currently!
 

imthedaughter

Registered User
Apr 3, 2019
518
That's the difference between your Dad and my Nan... she set her POAs up completely differently and is quite a controlling person by nature! That's why she needs a capacity test, without it, we cannot use the POAs to obtain care. Hoodwinking her is an option, but morally not the correct one so we're trying to avoid that if we can. We're hoping that we can find a solution that speeds up the process in the right way. It's all very confusing and were definitely being pushed from pillar to post currently!
Can you call the Office of Public Guardian and ask what they would accept in terms of the capacity/lack of it to activate the LPA? Seems the simplest solution?
 

Claireyeddy

Registered User
Sep 21, 2020
35
Can you call the Office of Public Guardian and ask what they would accept in terms of the capacity/lack of it to activate the LPA? Seems the simplest solution?
We already know its the capacity assessment by a professional, but thankyou! I will pass that onto my Dad, but we've already been through all of that which is why we're stuck in a loop :confused: Thanks again!
 

Bod

Registered User
Aug 30, 2013
1,349
Where exactly are the POA documents?
if you can get your hands on them, then approaching the the Memory clinic with them, may unlock the situation.

Bod
 

Claireyeddy

Registered User
Sep 21, 2020
35
Where exactly are the POA documents?
if you can get your hands on them, then approaching the the Memory clinic with them, may unlock the situation.

Bod
Hi! Thanks for replying. We have copies of the POA documents! What is the memory clinic? Is this localised to GP surgeries? If this is the case, all services available through them are already aware of how they have been set up and the urgency in having her assessed, but are stating they are not making assessments at the moment. It's hard to know where to turn next... the relevant service we have been referred to under both the GP and the hospital are unable to help. But if there is an independant memory service that we are not aware of, you're right, this may be the key!
 

Claireyeddy

Registered User
Sep 21, 2020
35
Where exactly are the POA documents?
if you can get your hands on them, then approaching the the Memory clinic with them, may unlock the situation.

Bod
I have just researched this, and in my area this is called the Memory Assessment Service, which we have been told is operating at the unit I mentioned above and are currently holding her results. They too are aware of the situation but have said a resolution could take many, many months due to their backlog!