Feel like I'm banging my head against a wall.

[Lucy Hudds]

Hi,

Not sure if I want to vent or ask for suggestions but here goes. I've posted about D before here and I managed to get some help with SS and have been able to take somewhat of a step back. D has now progressed to the point where I don't feel she is safe. Background for those who don't know, D attends our local recovery community hub socially and I took the initiative to get her diagnosed after we all noticed a decline in her memory. Since then I've got carers in twice a day and got her a proper social worker which was working well up until this last two weeks. D has no next of kin in this country (she's from the USA) and no support network other than me but I have had to step back to protect my own mental health and thought that would be enough for SS to step up. I am still an emergency contact for medical emergencies.

Everyone at the hub as seen a marked decline in her and she is now getting to the point where we feel she needs a support worker with her but SS are of the view that she is capable and has enough capacity to refuse help. The problem is they only speak on the phone with her (when she answers) and the carers see her for two visits which can sometimes only be minutes long unless they are taking her shopping. We see her all day, every weekday so notice the changes. D is good at being "on" when the carers visit as she goes into "hostess mode".

D is needing constant reassurance when she is at our hub to the point where she is coming to the office door up to 10 times in the space of an hour throughout the working day with a letter or a piece of paper she has found in her bag wanting to know if its something she should worry about. We reassure her, then 2 minutes later she's at the door again with the same piece of paper. In an evening and weekend she calls me constantly wanting reassurance that she hasn't done anything bad and that she's not in trouble. Today I have had five calls with D being in tears yelling "help me, I'm going crazy!" which is horrible to hear. Sometimes I don't answer the phone as it's getting too much.

Last week D broke into her medication lockbox and took too many tablets resulting in a trip to hospital. Luckily the carers hadn't been yet so discovered this at the evening call and called an ambulance. She was fine and was released that night. This week D came back to my workplace after closing in floods of tears and panicked to the point of being incapable of rational thought as she couldn't find her bus pass and couldn't remember how to get home. This is the fifth wallet she has mislaid in two weeks. I looked in her bag and there was only an empty coin purse, her phone a newspaper and the TV remote in it. The carers are supposed to ensure she her a laminated card with emergency numbers on it but they aren't checking this. To be honest in her state she wouldn't have thought to call anyone, she just came back to the hub because she views it as a place of safety. Again, it was only by chance that I was still there as I was locking up when she arrived back. If I'd have left by the time she returned she may have been lost in our town at night, which isn't the safest place in the world.

I've written to her SW and been rebuffed for another review as they can't infringe on "D's liberty by getting her a PA as she has the right to refuse help". I've written to her GP to try and get somewhere but heard nothing. I genuinely think that SS are waiting for something horrible to happen so they can shove her in a home which, in our area, will more than likely be miles away from her friends and familiar surroundings. I just dread the next crisis as it's only been by chance that nothing awful has happened yet.

Any advice would be appreciated, and thanks for letting me rant!

 

[Kevinl]

Just keep ranting, all hear to listen (well read at any rate). That and a big thank you on D's behalf.
K

 

[DeeCee7]

Hello @Lucy Hudds you have been a very good friend and support to your friend D, and at a real risk of jeopardising your own recovery. This has been going on for quite some time now ( I read your previous posts on this) and it’s unforgivable of SS to continue to rely on you on the one hand, by default, yet on the other hand bar you from giving your input on having another review. Is it time to involve her USA family again? To force SS to take more care of D, you will have to withdraw all of your support, which is a decision you haven’t been able to make so far. But you know, that that day won’t be far away. Can you speak candidly to D’s SW about this? I wish you all the very best in finding a solution, and a care home option might be better than you think. It would be a place of safety for D where carers are available 24 hours a day to reassure and calm her. Take care of yourself too, Lucy. Friends like you are very precious and rare and D is very fortunate in this respect.

 

[Lucy Hudds]

Hello @Lucy Hudds you have been a very good friend and support to your friend D, and at a real risk of jeopardising your own recovery. This has been going on for quite some time now ( I read your previous posts on this) and it’s unforgivable of SS to continue to rely on you on the one hand, by default, yet on the other hand bar you from giving your input on having another review. Is it time to involve her USA family again? To force SS to take more care of D, you will have to withdraw all of your support, which is a decision you haven’t been able to make so far. But you know, that that day won’t be far away. Can you speak candidly to D’s SW about this? I wish you all the very best in finding a solution, and a care home option might be better than you think. It would be a place of safety for D where carers are available 24 hours a day to reassure and calm her. Take care of yourself too, Lucy. Friends like you are very precious and rare and D is very fortunate in this respect.

I've emailed her brother in the US to keep them informed but there's little they can do beyond putting pressure on the SW. They can't really afford to fly over and if they did take her back to the US she'd be in a worse predicament as she has no health insurance.

It's just been a really bad week. The hospital trip seems to have thrown her for a loop and I have no option when I'm at work of ignoring her as she's there every day. We all do our best to reassure her and rally round her but we have all of our own equally complex clients to deal with. Sometimes i barely have time to go to the loo! We can't bar her from the premises as its her only social outlet. I tried taking her to our local dementia day care and she hated every second and demanded to leave and go back to the hub. She got quite sweary (normal for her, she's from Brooklyn!) which upset some of the ladies at the centre so I don't think she'd be welcomed back.

I'm.just at a loss of what to do and can't bear the thought of her being put in danger but the SS seem to wait for something awful to happen before they react. I've asked them what the plans were for the lighter evenings as she has no concept of time and will likely not return home until it gets dark and the response was "if she's not at home we'll ring the police" !!!

We had the same struggles with my own Granny 20 years ago and nothing seems to have progressed. It's a damning indictment on our society that we treat our elderly so badly.

Rant over!

 

[canary]

Hello @Lucy Hudds
You are right, not much has changed in 20 years, in fact I think it has actually got harder as there is a shortage of care homes and carers.

It sounds to me as though your friend now needs caring 24/7 - she needs someone with her all the time to reassure and direct her. Is she self-funding, or is she dependent on Local Authority funding? If she would be self-funding, and you have (I believe) POA for her then you can go ahead and organise care for her. Im not entirely sure what duties a PA covers. Is it like a live-in carer?

If she is dependent on LA funding, though, everything will be more limited. The LA will not generally fund live-in care. The maximum that they will do is carers 4 x a day. If this is not sufficient then they will fund a care home, but they very seldom fund more at home. They will also not override the person with dementias wishes unless they are considered "at risk". So, in essence, you are right - if your friend refuses carers or a care home SS will do nothing until there is a crisis which shows that she is "at risk" and then, all they can offer is a care home.

I would like to point out, though, that not all care homes are bad. My mum lived in a care home for her final 3 years and thrived there. My OH goes to a care home for a fortnights respite every 4 - 6 months and loves it. It does not just mean dumping people there. So if she ends up with no other choice, dont be too despondent about it.
xx

 

[Lucy Hudds]

Hello @Lucy Hudds
You are right, not much has changed in 20 years, in fact I think it has actually got harder as there is a shortage of care homes and carers.

It sounds to me as though your friend now needs caring 24/7 - she needs someone with her all the time to reassure and direct her. Is she self-funding, or is she dependent on Local Authority funding? If she would be self-funding, and you have (I believe) POA for her then you can go ahead and organise care for her. Im not entirely sure what duties a PA covers. Is it like a live-in carer?

If she is dependent on LA funding, though, everything will be more limited. The LA will not generally fund live-in care. The maximum that they will do is carers 4 x a day. If this is not sufficient then they will fund a care home, but they very seldom fund more at home. They will also not override the person with dementias wishes unless they are considered "at risk". So, in essence, you are right - if your friend refuses carers or a care home SS will do nothing until there is a crisis which shows that she is "at risk" and then, all they can offer is a care home.

I would like to point out, though, that not all care homes are bad. My mum lived in a care home for her final 3 years and thrived there. My OH goes to a care home for a fortnights respite every 4 - 6 months and loves it. It does not just mean dumping people there. So if she ends up with no other choice, dont be too despondent about it.
xx

She's self funding for now (only just above the threshold) and unfortunately she's too far gone for a POA. We've only just managed to get an external Deputy for finance and property which had to be applied for by the council as I'm not in a position to be this.

A Personal Assistant (PA) would be with her through the day to provide the support and reassurance she needs. They would also make sure that she was washed, dressed, fed and medicated which is something that is becoming an issue as she is argumentative with the carers who seem to give up at the least bit of resistance from D.

It's just so hard to watch someone who fought so hard to get sober get hit with this. She should be enjoying her golden years instead of dissolving in front of me. It's such a cruel disease.

 

[caro66]

Hi,

Not sure if I want to vent or ask for suggestions but here goes. I've posted about D before here and I managed to get some help with SS and have been able to take somewhat of a step back. D has now progressed to the point where I don't feel she is safe. Background for those who don't know, D attends our local recovery community hub socially and I took the initiative to get her diagnosed after we all noticed a decline in her memory. Since then I've got carers in twice a day and got her a proper social worker which was working well up until this last two weeks. D has no next of kin in this country (she's from the USA) and no support network other than me but I have had to step back to protect my own mental health and thought that would be enough for SS to step up. I am still an emergency contact for medical emergencies.

Everyone at the hub as seen a marked decline in her and she is now getting to the point where we feel she needs a support worker with her but SS are of the view that she is capable and has enough capacity to refuse help. The problem is they only speak on the phone with her (when she answers) and the carers see her for two visits which can sometimes only be minutes long unless they are taking her shopping. We see her all day, every weekday so notice the changes. D is good at being "on" when the carers visit as she goes into "hostess mode".

D is needing constant reassurance when she is at our hub to the point where she is coming to the office door up to 10 times in the space of an hour throughout the working day with a letter or a piece of paper she has found in her bag wanting to know if its something she should worry about. We reassure her, then 2 minutes later she's at the door again with the same piece of paper. In an evening and weekend she calls me constantly wanting reassurance that she hasn't done anything bad and that she's not in trouble. Today I have had five calls with D being in tears yelling "help me, I'm going crazy!" which is horrible to hear. Sometimes I don't answer the phone as it's getting too much.

Last week D broke into her medication lockbox and took too many tablets resulting in a trip to hospital. Luckily the carers hadn't been yet so discovered this at the evening call and called an ambulance. She was fine and was released that night. This week D came back to my workplace after closing in floods of tears and panicked to the point of being incapable of rational thought as she couldn't find her bus pass and couldn't remember how to get home. This is the fifth wallet she has mislaid in two weeks. I looked in her bag and there was only an empty coin purse, her phone a newspaper and the TV remote in it. The carers are supposed to ensure she her a laminated card with emergency numbers on it but they aren't checking this. To be honest in her state she wouldn't have thought to call anyone, she just came back to the hub because she views it as a place of safety. Again, it was only by chance that I was still there as I was locking up when she arrived back. If I'd have left by the time she returned she may have been lost in our town at night, which isn't the safest place in the world.

I've written to her SW and been rebuffed for another review as they can't infringe on "D's liberty by getting her a PA as she has the right to refuse help". I've written to her GP to try and get somewhere but heard nothing. I genuinely think that SS are waiting for something horrible to happen so they can shove her in a home which, in our area, will more than likely be miles away from her friends and familiar surroundings. I just dread the next crisis as it's only been by chance that nothing awful has happened yet.

Any advice would be appreciated, and thanks for letting me rant!

I assume she's not self funding? I say this because I feel money is at the root of everything. Put in an official complaint to Social Services if you feel you're not being listened to and contact Healthwatch

 

[canary]

unfortunately she's too far gone for a POA. We've only just managed to get an external Deputy for finance and property which had to be applied for by the council as I'm not in a position to be this.

I assume this means that the deputyship is help by a panel solicitor rather than by you. If this is correct then unfortunately you will have no (or very little) say on what her money is spent on. I think it very unlikely that you will be able to persuade SS or the panel solicitor to employ a PA/live-in carer