Best interests

[bumblefeet]

Hi all,
My mum is in rehab, and we're trying to make plans for the next move. As documented on a previous thread, we feel that she would be better off in residential care, from both a practical and emotional point of view. She's sundowning during the early hours, (say, between 11pm and 3am), and thinks it's time for breakfast. She's done that for the last 13 nights out of 19.

The OT has referred her to a social worker, and there will be a best interests meeting. I'm expecting the social worker to call me today. She will be carrying out a Mental Capacity test, as part of the best interests process. I think that mum will possibly fail, she was never decisive, and won't commit herself to a decent answer now.

I truly don't know how to handle this situation.

I feel that the OT just wants to send her home, I don't think that he has much experience with dementia patients. He seems determined to send her home with a dementia clock. His view, is that the reason that she doesn't understand the clock, is because she can't see it, so he has arranged for an eye test, to get her glasses. A lovely idea, but, she will have to remember to put them on!!
He informs me that she will fare better back in her own home, with 40 years worth of memories, and will settle down quite nicely, once she has a commode in the living room, her dementia clock, a pendant alarm, and a couple of care visits per day.

He's completely missing the point that she actually doesn't understand the dementia clock, she would forget her glasses, (she's never worn them before), and, although she would have a pendant alarm, we don't want her to fall in the first place!!

She has blossomed whilst in rehab, as she has lots of company, and has put on half a stone so far. She's getting 3 regular meals per day, and plenty of drinks and stimuli.
As a family, we would love that to continue. If nothing else, she would be safe, and she loves the company. Even though she's very deaf, just the presence of others would enhance her life.

She also has an ulcerated leg wound, and had trouble getting down the stairs, despite two handrails.

If she was back at home, she would be having her teeny tiny meals (half a tin of soup for her lunch), and be anxious all the time, waiting for her next visitor to come and take care of her. Her hygiene would vanish again, and she would have no stimuli.

I've never dealt with social workers, and I'm struggling to deal with the OT, his suggestions seem so preposterous that I have to bite my tongue.

Our family are also suffering because of this, as my husband and I both run our own businesses. As I do the books for both businesses, both are suffering, because I am under so much stress trying to sort this out, I literally can't think straight. I spend all day worrying about this, then am too headachy and tired in the evening to deal with anything else.
I don't want to mention this though, because then it will be 'all about me', and that's the last person it should be about.


I don't know how to handle myself in this situation, or what to say, the buzz words to use etc. I'm a fairly straight forward kind of person, and I'm worried about saying the wrong thing. I'm considering writing myself a report, to then use at the meeting.

I'd appreciate your thoughts and advice.

 

[Princess t]

Hi all,
My mum is in rehab, and we're trying to make plans for the next move. As documented on a previous thread, we feel that she would be better off in residential care, from both a practical and emotional point of view. She's sundowning during the early hours, (say, between 11pm and 3am), and thinks it's time for breakfast. She's done that for the last 13 nights out of 19.

The OT has referred her to a social worker, and there will be a best interests meeting. I'm expecting the social worker to call me today. She will be carrying out a Mental Capacity test, as part of the best interests process. I think that mum will possibly fail, she was never decisive, and won't commit herself to a decent answer now.

I truly don't know how to handle this situation.

I feel that the OT just wants to send her home, I don't think that he has much experience with dementia patients. He seems determined to send her home with a dementia clock. His view, is that the reason that she doesn't understand the clock, is because she can't see it, so he has arranged for an eye test, to get her glasses. A lovely idea, but, she will have to remember to put them on!!
He informs me that she will fare better back in her own home, with 40 years worth of memories, and will settle down quite nicely, once she has a commode in the living room, her dementia clock, a pendant alarm, and a couple of care visits per day.

He's completely missing the point that she actually doesn't understand the dementia clock, she would forget her glasses, (she's never worn them before), and, although she would have a pendant alarm, we don't want her to fall in the first place!!

She has blossomed whilst in rehab, as she has lots of company, and has put on half a stone so far. She's getting 3 regular meals per day, and plenty of drinks and stimuli.
As a family, we would love that to continue. If nothing else, she would be safe, and she loves the company. Even though she's very deaf, just the presence of others would enhance her life.

She also has an ulcerated leg wound, and had trouble getting down the stairs, despite two handrails.

If she was back at home, she would be having her teeny tiny meals (half a tin of soup for her lunch), and be anxious all the time, waiting for her next visitor to come and take care of her. Her hygiene would vanish again, and she would have no stimuli.

I've never dealt with social workers, and I'm struggling to deal with the OT, his suggestions seem so preposterous that I have to bite my tongue.

Our family are also suffering because of this, as my husband and I both run our own businesses. As I do the books for both businesses, both are suffering, because I am under so much stress trying to sort this out, I literally can't think straight. I spend all day worrying about this, then am too headachy and tired in the evening to deal with anything else.
I don't want to mention this though, because then it will be 'all about me', and that's the last person it should be about.


I don't know how to handle myself in this situation, or what to say, the buzz words to use etc. I'm a fairly straight forward kind of person, and I'm worried about saying the wrong thing. I'm considering writing myself a report, to then use at the meeting.

I'd appreciate your thoughts and advice.

Hi...this probably won't be much help to you but I know exactly how you feel.....my mom was in hospital after a fall, they thought she had broken a hip, but it was an old one we didn't know about, they kept her in for three weeks, she saw an ot....he was Italian mom couldn't understand a word, but in hospital she ate three meals a day,they took her walks up corridor. And to loo. She could barely walk but she pushed herself, she loved watching the other patients. We wanted her to go into rehab or something similar. But no the hospital thought she was grate and could go home, I must admit they arranged hospital carers for her first week home, even throughout the night. When mom was in hospital she was clean and well fed....back home over a week, she refuses to wash, change her clothes eat, she just sits, staring into space.her memory has got so much worse, we dread the thought of phone ringing to say she's on the floor, mom refuses a panic alarm, and they say if she says no that's the end of it. I am stressed 24/7 and know my two sisters are too. Mom has seen all the right people , she is having four carers a day now but mom says no to all their help, we have been told by doc to step back, stop helping so much and let her get used to the carers. Very very hard. Mom always said she didn't want to live like this when she saw her mother in law like it......mom is far worse!

 

[annierich]

I know you say you don't want it to be 'all about me' but some of it has to be. You sound as though you are really struggling and are very stressed. You need to think of yourself and your businesses - without intending to sound blunt and insensitive- you will need to keep your businesses running properly to provide income for yourselves for the rest of your working lives. You can't do that if you have 'Carer's breakdown'. I think you need to maybe consider telling the professionals that you can no longer support your PWD and that they have a 'duty of care' for a 'vulnerable adult' and that you will 'hold them responsible' if they send her home and anything happens to her. I presume that she is not 'self funding'?

 

[Witzend]

Hi all,
My mum is in rehab, and we're trying to make plans for the next move. As documented on a previous thread, we feel that she would be better off in residential care, from both a practical and emotional point of view. She's sundowning during the early hours, (say, between 11pm and 3am), and thinks it's time for breakfast. She's done that for the last 13 nights out of 19.

The OT has referred her to a social worker, and there will be a best interests meeting. I'm expecting the social worker to call me today. She will be carrying out a Mental Capacity test, as part of the best interests process. I think that mum will possibly fail, she was never decisive, and won't commit herself to a decent answer now.

I truly don't know how to handle this situation.

I feel that the OT just wants to send her home, I don't think that he has much experience with dementia patients. He seems determined to send her home with a dementia clock. His view, is that the reason that she doesn't understand the clock, is because she can't see it, so he has arranged for an eye test, to get her glasses. A lovely idea, but, she will have to remember to put them on!!
He informs me that she will fare better back in her own home, with 40 years worth of memories, and will settle down quite nicely, once she has a commode in the living room, her dementia clock, a pendant alarm, and a couple of care visits per day.

He's completely missing the point that she actually doesn't understand the dementia clock, she would forget her glasses, (she's never worn them before), and, although she would have a pendant alarm, we don't want her to fall in the first place!!

She has blossomed whilst in rehab, as she has lots of company, and has put on half a stone so far. She's getting 3 regular meals per day, and plenty of drinks and stimuli.
As a family, we would love that to continue. If nothing else, she would be safe, and she loves the company. Even though she's very deaf, just the presence of others would enhance her life.

She also has an ulcerated leg wound, and had trouble getting down the stairs, despite two handrails.

If she was back at home, she would be having her teeny tiny meals (half a tin of soup for her lunch), and be anxious all the time, waiting for her next visitor to come and take care of her. Her hygiene would vanish again, and she would have no stimuli.

I've never dealt with social workers, and I'm struggling to deal with the OT, his suggestions seem so preposterous that I have to bite my tongue.

Our family are also suffering because of this, as my husband and I both run our own businesses. As I do the books for both businesses, both are suffering, because I am under so much stress trying to sort this out, I literally can't think straight. I spend all day worrying about this, then am too headachy and tired in the evening to deal with anything else.
I don't want to mention this though, because then it will be 'all about me', and that's the last person it should be about.


I don't know how to handle myself in this situation, or what to say, the buzz words to use etc. I'm a fairly straight forward kind of person, and I'm worried about saying the wrong thing. I'm considering writing myself a report, to then use at the meeting.

I'd appreciate your thoughts and advice.

Is a SW qualified to do a mental capacity test on their own? I'm not sure I'd be happy about this, for a start.

The OT clearly doesn't have much of a clue about dementia, if he thinks that a dementia clock and a pendant alarm are necessarily going to be any use. Beyond a certain stage the person will very likely a) forget to look at the clock, or b) not comprehend what it says, or c) maybe understand, but forget almost as soon as they've turned away from it.
Ditto pendant alarms - forget to wear it, forget what it's for or how to use it even if they do, or (maybe even more likely) hide it away.

Personally I would point out these basic matters, and don't let them try to tell you they must know better about such things because they are 'professionals'. It's not uncommon for people who you'd think really ought to know, to fail to understand the practical daily realities of dementia.
However it may be that their rules state that they have to try these things before they are forced to accept that they can't or don't help.
If funding is an issue, they will almost certainly be doing their best to avoid care home fees until there is clearly no other choice even by their own criteria.

The buzz words often quoted here are 'vulnerable' and 'at risk'.

Good luck - such a worrying time. I wish you all the best with it.

 

[bumblefeet]

I know you say you don't want it to be 'all about me' but some of it has to be. You sound as though you are really struggling and are very stressed. You need to think of yourself and your businesses - without intending to sound blunt and insensitive- you will need to keep your businesses running properly to provide income for yourselves for the rest of your working lives. You can't do that if you have 'Carer's breakdown'. I think you need to maybe consider telling the professionals that you can no longer support your PWD and that they have a 'duty of care' for a 'vulnerable adult' and that you will 'hold them responsible' if they send her home and anything happens to her. I presume that she is not 'self funding'?

Thanks Annierich,
She will be self funding, which is causing part of the stress. It all seems to be a bit 'hammer to crack a nut', when all we want to do is to care for her safely.

 

[bumblefeet]

Is a SW qualified to do a mental capacity test on their own? I'm not sure I'd be happy about this, for a start.

The OT clearly doesn't have much of a clue about dementia, if he thinks that a dementia clock and a pendant alarm are necessarily going to be any use. Beyond a certain stage the person will very likely a) forget to look at the clock, or b) not comprehend what it says, or c) maybe understand, but forget almost as soon as they've turned away from it.
Ditto pendant alarms - forget to wear it, forget what it's for or how to use it even if they do, or (maybe even more likely) hide it away.

Personally I would point out these basic matters, and don't let them try to tell you they must know better about such things because they are 'professionals'. It's not uncommon for people who you'd think really ought to know, to fail to understand the practical daily realities of dementia.
However it may be that their rules state that they have to try these things before they are forced to accept that they can't or don't help.
If funding is an issue, they will almost certainly be doing their best to avoid care home fees until there is clearly no other choice even by their own criteria.

The buzz words often quoted here are 'vulnerable' and 'at risk'.

Good luck - such a worrying time. I wish you all the best with it.

Thanks Witzend,
She will be self funding, and I've told the OT this several times. I suspect that he has his own agenda, and maybe wants her to be a success story, hence his insistence. I suspect that he is newly qualified, he's certainly only been at the rehab unit for 4 weeks, and my mum was one of his first cases. I suspect that he has no practical knowledge of how her life will be at home, despite him visiting with myself, and describing her life.

 

[HillyBilly]

If you have POA and your Mum is self-funding, then you can just go ahead and sort suitable residential care for her yourself. Have you identified any suitable care homes and got your Mum on the waiting list? The CH will probably want to assess your Mum before they agree to take her but if they're a dementia specialist CH that should just be a formality. You can, in theory, tell SS to butt out AFAIK.

 

[annierich]

If you have POA and your Mum is self-funding, then you can just go ahead and sort suitable residential care for her yourself. Have you identified any suitable care homes and got your Mum on the waiting list? The CH will probably want to assess your Mum before they agree to take her but if they're a dementia specialist CH that should just be a formality. You can, in theory, tell SS to butt out AFAIK.

Absolutely agree with this. If she is self funding I'm surprised the NHS and SS are getting involved at all. They usually offer little support when they don't have to pay. I think you should go ahead and find a CH yourself and tell them firmly that she needs to stay where she is until you have found a place for her.

 

[bumblefeet]

We have a care home place for her, and they are holding the room.
Another source of stress, because we will lose the room if we're not careful, due to the delays.
I have no idea how to handle this, and don't even know if we can just inform the rehab place that we're moving her, or if procedures need to be followed.
Mum is vunerable, in that she has base line dementia, which has got considerably worse since the operation, and she gets very confused.

You think that we can just discharge her ourselves, despite the rehab unit being run by the NHS?

 

[bumblefeet]

Absolutely agree with this. If she is self funding I'm surprised the NHS and SS are getting involved at all. They usually offer little support when they don't have to pay. I think you should go ahead and find a CH yourself and tell them firmly that she needs to stay where she is until you have found a place for her.

Just re read this, we don't have POA at the moment. She was about to sign, then fell and broke her hip.

 

[annierich]

Just re read this, we don't have POA at the moment. She was about to sign, then fell and broke her hip.

What do 'the powers that be' in the rehab unit say about discharge? Not the OT /SW but the nurse in charge? Maybe give Alzheimers UK or Age UK a call to ask for their advice.
Alternatively what about asking the person in charge at the CH? Surely they must know the protocol for a situation like this?

 

[bumblefeet]

What do 'the powers that be' in the rehab unit say about discharge? Not the OT /SW but the nurse in charge? Maybe give Alzheimers UK or Age UK a call to ask for their advice.
Alternatively what about asking the person in charge at the CH? Surely they must know the protocol for a situation like this?

I've called Alzheimers, and they recommended getting the assessment done from the Care Home anyway, in order to assess our options, so I have that organised for Tuesday. They pulled their face a bit when I admitted that she wanders, but they're willing to do an assessment. That takes some stress off straight away, because I don't need to worry about the care home place for a few days now.

I hadn't thought of asking the nurse in charge. She's lovely, and I think she's got the measure of the situation more than the OT has.
Thanks for suggesting that, I'll track her down. I doubt that I'll find her until Monday now, but at least nothing will happen over the weekend, so I can just enjoy visits.

Thank you!

 

[Nut]

Hi Bumblefeet, what a stressful situation. This is what I know about discharges/Mental Capacity Act (MCA) & stuff. I come across it regularly in my own line of work and no, it hasn't helped when it comes to my own Mum. Anyway, the MCA does not specify any special qualifications to undertake a mental capacity assessment. The assessment is only relevant for that one decision at that time, in your case your Mum's discharge destination. In my experience the NHS is poor at training and supporting their staff in using the MCA in all settings. In the rehab unit i went to the other day the ward sister had referred for a social worker to do an assessment for a person self funding as they did not think they could do one themselves. It sounds like this is your Mum's situation. The person doing the assessment should find the best time of day and a quiet place to talk so the person can hear and think at their best. They need to be asked for their own views, wishes and feelings, values and beliefs (words from the act...) about going home and about going to a care home. They also need to be asked about how they would manage at home with all normal activities such as washing, dressing, making a hot drink, making simple snacks and meals, getting to the loo, what they would do if they fell. Their words need to be matched against the observations/assessments done on the ward. As we know sometimes people are verbally pretty able but do not recognise the decline in their own abilities. All this needs to be recorded and should be written up fully in your Mum's notes. It is NOT sufficient to write simply "x has capacity for this decision". There needs to be evidence to show how the conclusion was reached.
As your Mum will be self funding then social services will have no role in deciding or placing her. The MCA requires someone to be the "decision maker" - in your case I think the NHS as a "public authority" will have the responsibility of making the decision if your Mum lacks capacity. This could be the ward sister, the ward manager or discharge co-ordinator. You, as family, are "consulted" over what you know about your Mum's wishes,feelings,values, beliefs, and what you think is in your Mum's best interests. I think your idea of a report is a good one, even if it is a list of ALL the things you have witnessed with your Mum's difficulties and the improvement you have seen on the ward. This can be an aide memoire for yourself so you don't come out of a best interest meeting kicking yourself for having forgotten something. It is perfectly valid to clearly state what support you can/can't give and that the current situation is impacting severely on your own mental health and well-being.
It honestly sounds to me as if your Mum will be going to the care home you have chosen. You can harry them for a date sooner rather than later- they do not want a "delayed discharge" after all.
I think your views of the OT are bang on- a newbie, keen for a success story, ill informed about life with dementia. I am glad the sister is seeing things they way they really are.
I would also say that when your Mum is out of hospital her cognition may improve, even in a new environment. The MCA says that someone needs to be able to understand the decision, retain and weigh information only for long enough to make the decision. Also to be able to communicate it. My point is that your Mum may have lucid 20-30 minutes when she can understand and sign a LPA. Keep notes yourself of the conversation. The forms are lengthy but straightforward.
Good luck. I am sure it is going in the right direction. IF they make the wrong decision and try to send her home then make a "safeguarding alert" (google your local number) and say your Mum is a vulnerable adult and at risk of significant harm.
Good luck!




Sent from my iPad using Talking Point

 

[bumblefeet]

Hi Bumblefeet, what a stressful situation. This is what I know about discharges/Mental Capacity Act (MCA) & stuff. I come across it regularly in my own line of work and no, it hasn't helped when it comes to my own Mum. Anyway, the MCA does not specify any special qualifications to undertake a mental capacity assessment. The assessment is only relevant for that one decision at that time, in your case your Mum's discharge destination. In my experience the NHS is poor at training and supporting their staff in using the MCA in all settings. In the rehab unit i went to the other day the ward sister had referred for a social worker to do an assessment for a person self funding as they did not think they could do one themselves. It sounds like this is your Mum's situation. The person doing the assessment should find the best time of day and a quiet place to talk so the person can hear and think at their best. They need to be asked for their own views, wishes and feelings, values and beliefs (words from the act...) about going home and about going to a care home. They also need to be asked about how they would manage at home with all normal activities such as washing, dressing, making a hot drink, making simple snacks and meals, getting to the loo, what they would do if they fell. Their words need to be matched against the observations/assessments done on the ward. As we know sometimes people are verbally pretty able but do not recognise the decline in their own abilities. All this needs to be recorded and should be written up fully in your Mum's notes. It is NOT sufficient to write simply "x has capacity for this decision". There needs to be evidence to show how the conclusion was reached.
As your Mum will be self funding then social services will have no role in deciding or placing her. The MCA requires someone to be the "decision maker" - in your case I think the NHS as a "public authority" will have the responsibility of making the decision if your Mum lacks capacity. This could be the ward sister, the ward manager or discharge co-ordinator. You, as family, are "consulted" over what you know about your Mum's wishes,feelings,values, beliefs, and what you think is in your Mum's best interests. I think your idea of a report is a good one, even if it is a list of ALL the things you have witnessed with your Mum's difficulties and the improvement you have seen on the ward. This can be an aide memoire for yourself so you don't come out of a best interest meeting kicking yourself for having forgotten something. It is perfectly valid to clearly state what support you can/can't give and that the current situation is impacting severely on your own mental health and well-being.
It honestly sounds to me as if your Mum will be going to the care home you have chosen. You can harry them for a date sooner rather than later- they do not want a "delayed discharge" after all.
I think your views of the OT are bang on- a newbie, keen for a success story, ill informed about life with dementia. I am glad the sister is seeing things they way they really are.
I would also say that when your Mum is out of hospital her cognition may improve, even in a new environment. The MCA says that someone needs to be able to understand the decision, retain and weigh information only for long enough to make the decision. Also to be able to communicate it. My point is that your Mum may have lucid 20-30 minutes when she can understand and sign a LPA. Keep notes yourself of the conversation. The forms are lengthy but straightforward.
Good luck. I am sure it is going in the right direction. IF they make the wrong decision and try to send her home then make a "safeguarding alert" (google your local number) and say your Mum is a vulnerable adult and at risk of significant harm.
Good luck!




Sent from my iPad using Talking Point

Thanks Nut, that was my understanding of the situation. I don't envisage her passing the MCA, although nothing would surprise me! She can't seem to retain information, and to imagine her doing so, then making an actual decison, then giving a rational reason for doing so stretches my imagination somewhat. But, you never know!

I've been to her house over the weekend, and found that part of the bedroom ceiling has collapsed, meaning that we have now had to organise roof repairs. She refused to have them done whilst she was living there, as she didn't want the fuss.
Ditto the windows, her bedroom window needs replacing, along with the kitchen ones too. I suspect the house is damp, as there are patches inside the house where the wallpaper is discoloured, that match the pointing requiring attention etc., so now I've found that out, I definitely don't want her returning to a damp house.


Just a question, if, by some chance, she did return home, would we need to go through the same palavar of best interest meetings etc.? Or could we just make our arrangements and effectively make the decision together as a family (with her at the heart of it, obviously), and just do our own thing?

I ask, because she is a bit of a pleaser, and I worry that she'll say what she thinks people want to hear, and not actually make her own decision. We would support her decision regardless, of course.

 

[Nut]

If your Mum doesn't have capacity to make her own decision then returning home would be a best interests decision, as much as moving to a care home. If she does have capacity....well over to her, but looks unlikely.
I moved my Mum to a care home 6 weeks ago to be near me. She was 2 3/4 hours drive away, not eating properly even with carer support, lonely - I could go on and on including how neglected the house is (not quite at ceiling collapse tho!)The first three weeks were hard, but I am amazed how quickly Mum has settled, got to know staff and other residents. Her dementia is mid-stage so she has some awareness of where she is. I now know in my bones she is in the right place. She loves the staff coming in to check on her at night and says it makes her feel cared for and looked after. I could never have predicted that. Basically I wanted to say that if your Mum does go to a care home then it will all work out... Wishing you all the best.




Sent from my iPad using Talking Point

 

[canary]

I've been to her house over the weekend, and found that part of the bedroom ceiling has collapsed, meaning that we have now had to organise roof repairs. She refused to have them done whilst she was living there, as she didn't want the fuss.
Ditto the windows, her bedroom window needs replacing, along with the kitchen ones too. I suspect the house is damp, as there are patches inside the house where the wallpaper is discoloured, that match the pointing requiring attention etc., so now I've found that out, I definitely don't want her returning to a damp house.

It sounds to me like the perfect argument as to why she cant go home - the house needs repairs. It may be a question of having respite while the repairs are done - and then it becomes permanent.

 

[bumblefeet]

Thanks Nut.
My mum will know where she is, but I honestly think that she'll be relieved.
She'll love to have company, and our whole family have the gut feeling that all will be well once this is achieved.
Thanks for your advice, I'm off to make sense of my diary records, and do a report.

She hid dirty laundry from the staff in rehab the other day, apparently it had got
'stuff on it overnight'. I'll leave the rest to your imagination....