Fluctuating Capacity

[TNJJ]

I can understand that. I rang the care agency & asked if they could sort out Mums shopping, I also emailed the district nurse after a disastrous attempt to arrange a home audiologist as asked for by District nurse etc. Let’s just say that the advert doesn’t tell you that the mobile audiologist only works one day a month!! Guess what ... there is a waiting list...... no shock there then. Oh & mum is meant to send in her broken hearing aid ... how ? No post office in village bus ride away & she’s house bound! Care package is still in place but funds now reaching the point that financial assessment is required!
Let the fun begin!

Hi.Personally I’m sick to the back teeth of it all.Care company is not great but hey ho. They are finding out the “true” dad this week in the home. I won’t be doing what I was before.
I will be popping in but not on certain days.I will inform him of such...As you say..Let the fun begin!

 

[DesperateofDevon]

Hi.Personally I’m sick to the back teeth of it all.Care company is not great but hey ho. They are finding out the “true” dad this week in the home. I won’t be doing what I was before.
I will be popping in but not on certain days.I will inform him of such...As you say..Let the fun begin!

it’s sad isn’t it that carers get backed into corners continually. The whole competency issue very quickly unravels when you aren’t there to fill in the gaps! Stick with it - you need them to see the real issues. I really do feel for you. ((((((((hugs))))))))))

 

[Champers]

Had enough.Dad coming home after respite as he won’t stay.”Capacity “ again.
That’s ok. So let the wagons roll!
Tomorrow I’m requesting that the care group do dads shopping and take him out the same time.
They can also keep an eye on dads medication as well.
Him being in the home for 3 weeks has given me a break and peace of mind.But no more..
They can have the responsibility.I don’t want it

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

 

[TNJJ]

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

As dad cannot remember his own address and cannot use a phone.,or even remember to press his lifeline it is going to be fun.
I am prepared to stand back and watch.I fully expect it to be chaos as I order dads pads on the internet so it will be fun..
Dad won’t be happy but hey .He will be able to do his shopping with the carers. He doesn’t have a card as he cannot use one so I will have to make sure he has cash..What fun it is going to be.
Before he went in to “respite “I felt ill and I am so not going there again.

 

[TNJJ]

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

@Champers your MIL was self funding no?

 

[Bunpoots]

There is only so much we can take @TNJJ . Stand firm!

 

[TNJJ]

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

@

There is only so much we can take @TNJJ . Stand firm!

Thank you

 

[DesperateofDevon]

I can relate to this. Long battles with hospital SW last summer saying MIL had capacity to make her own decisions about care and her wanting to go home. To impress upon him and the other agencies that she didn’t have capacity, we withdrew from all the support we had been giving her so they could see the real picture. Despite telling them that it was over to them because they seemed to have already made up their minds, we still kept getting phone calls to arrange this and that. In the end I had to firmly say, please do not call us, you need to speak directly to MIL as you’re the ones saying she is capable of her own decisions. Tragically, MIL then started ringing us begging us to take over her care and we had to try and tell a confused 91 year old that we couldn’t and it had been taken out of our hands, which merely added to her distress.

Prepare to become entrenched for a while, but it did eventually get through to a second SW. He was able to stand back and see the whole picture rather than following the text book. He listened to us and made an effort to understand the family dynamics. It’s very, very tough having to be intransigent but it’s vital they wake up and see the true scenario.

We also earned a ‘bad report’ from SS. I requested to see it under FOI and there were all sorts of ‘opinions’ on file which were outrageous and a few were untrue. All because we wanted the best for MIL and disagreed with the authorities on how to achieve it. We went through it with a fine tooth comb with corrections. Whilst they wouldn’t change the report, they did out a note on file that we had challenged the contents.

it’s shocking that they wouldn’t change the corrections. I have challenged assessments & experienced “the processes “ it’s ridiculous that the progression which has already happened has to be catalogued! So much for assessing what they see, if they only want to catalogue best case scenarios then the system is never going to support those who need it!

 

[DesperateofDevon]

As dad cannot remember his own address and cannot use a phone.,or even remember to press his lifeline it is going to be fun.
I am prepared to stand back and watch.I fully expect it to be chaos as I order dads pads on the internet so it will be fun..
Dad won’t be happy but hey .He will be able to do his shopping with the carers. He doesn’t have a card as he cannot use one so I will have to make sure he has cash..What fun it is going to be.
Before he went in to “respite “I felt ill and I am so not going there again.

I have ended up very unwell on a couple of occasions due to the stress of sorting care packages out & was amazed at the total stubbornness to follow SS processes to the point of endangering the PWD. Mum supposedly competent & with capacity ended up in hospital for 5 weeks this year because according to GP & SS she had capacity.

my arguments before the hospital stay & sadly after was that yes mum can make decisions but they are poor decisions with consequences. SS felt that was acceptable- so I said ok then & stepped back & let the chaos happen.

honestly it was cruel & heartbreaking process to ensure Mums safety. SS has labelled me the problem as had the GP!
All I can say is proving them wrong with medical evidence has given me no pleasure, just sadness at the horrendous situation the so called authorities “with duty of care “ put a PWD in!

when Mum & Dad have finally travelled their dementia journey & passed I intend to be a very loud voice about the horrendous situation- I cannot undertake this until I can get my emotions under control & need to see the processes through to the end & keep fighting their corner.

in all of this for my own sanity & health I have had to step back, the consequences for both parents have resulted in safeguarding.

Be prepared for the worse case scenarios & hopefully you might be pleasantly surprised.

sending ((((((((((((((big hugs)))))))))))))))))

 

[imthedaughter]

We have exactly the same 'capacity' flip flop, @DesperateofDevon . CH looking to get DOL in place since Dad has been up at all hours demanding to go out, half dressed, no coat etc. Doesn't know what's night and day, thinks he's in the RAF again etc. Dr assessed him as having quite severe memory issues when she referred him but the latest Dr got him in full host mode and he was almost perfect in the memory test and deemed to have capacity. Our one ray of hope was that the Dr had an inkling and has asked to return on another day. The first memory test we had in the spring Dad did pretty well on but was absolutely exhausted afterwards - he was really confused just after the appointment, asking me the same questions over and over. I don't know how they do it!

 

[TNJJ]

We have exactly the same 'capacity' flip flop, @DesperateofDevon . CH looking to get DOL in place since Dad has been up at all hours demanding to go out, half dressed, no coat etc. Doesn't know what's night and day, thinks he's in the RAF again etc. Dr assessed him as having quite severe memory issues when she referred him but the latest Dr got him in full host mode and he was almost perfect in the memory test and deemed to have capacity. Our one ray of hope was that the Dr had an inkling and has asked to return on another day. The first memory test we had in the spring Dad did pretty well on but was absolutely exhausted afterwards - he was really confused just after the appointment, asking me the same questions over and over. I don't know how they do it!

It drives you insane. Dad cannot remember his address so if he needs to use a phone he had better shout loudly as he cannot..
Tbh I feel stressed again and he isn’t back yet.SS need training in host modes!

 

[TNJJ]

I have ended up very unwell on a couple of occasions due to the stress of sorting care packages out & was amazed at the total stubbornness to follow SS processes to the point of endangering the PWD. Mum supposedly competent & with capacity ended up in hospital for 5 weeks this year because according to GP & SS she had capacity.

my arguments before the hospital stay & sadly after was that yes mum can make decisions but they are poor decisions with consequences. SS felt that was acceptable- so I said ok then & stepped back & let the chaos happen.

honestly it was cruel & heartbreaking process to ensure Mums safety. SS has labelled me the problem as had the GP!
All I can say is proving them wrong with medical evidence has given me no pleasure, just sadness at the horrendous situation the so called authorities “with duty of care “ put a PWD in!

when Mum & Dad have finally travelled their dementia journey & passed I intend to be a very loud voice about the horrendous situation- I cannot undertake this until I can get my emotions under control & need to see the processes through to the end & keep fighting their corner.

in all of this for my own sanity & health I have had to step back, the consequences for both parents have resulted in safeguarding.

Be prepared for the worse case scenarios & hopefully you might be pleasantly surprised.

sending ((((((((((((((big hugs)))))))))))))))))

Oh yes! Lovely making poor decisions with consequences! Nobody in their right mind would want those consequences.But hey! They have capacity!!

Dad could understand the consequences of not being on a soft diet and choking.Then so be it..(Assessed at the home)But cannot use a phone or know his address.So that is going to be useful to get an ambulance to him should he need it..

I didn’t sleep last night through the beginnings of worry again.

I’m taking advice from my mum and people here.Plus my own.Stepping back..

 

[Champers]

You’re doing exactly the right thing TNJJ. Stand your ground. Everyone who has posted on here supports your decision completely. It’s very tough, because you do care, and it goes against your naturally loving and compassionate instincts. But, sadly, it’s sometimes the only way that you can get the right result for your loved one.

What never seems to occur to the authorities that make these judgements, that if things remain as they are, the principle carer - you - will also end up buckling under the strain and become an indirect casualty of the dementia too.

Keep posting and updating how you are getting on.

 

[TNJJ]

Well phoned dads doctor.Told them his weight and that he is due back next week.Also explained that if they want to know his assessment they had better phone the home.

Also that he had been assessed for capacity with food .That he understood the consequences. I told the doctors receptionist that I know dad cannot use his phone ,lifeline etc.. Also told them that I was passing the buck back to them..

 

[imthedaughter]

It drives you insane. Dad cannot remember his address so if he needs to use a phone he had better shout loudly as he cannot..
Tbh I feel stressed again and he isn’t back yet.SS need training in host modes!

Well the GPS tracking watch I just got for Dad so he can come and go as he pleases, night or day, naked or clothed, can be called and it connects automatically so you can literally shout at him from his wrist which sounds utterly disturbing to me but might one day be useful! Dad using the phone went a while ago. I was determined for him to have a phone in the CH but soon gave up.

 

[TNJJ]

Well the GPS tracking watch I just got for Dad so he can come and go as he pleases, night or day, naked or clothed, can be called and it connects automatically so you can literally shout at him from his wrist which sounds utterly disturbing to me but might one day be useful! Dad using the phone went a while ago. I was determined for him to have a phone in the CH but soon gave up.

I think the GPS watch sounds good but dad cannot move without help.He has a hospital bed so when he is in it no chance of escape..

 

[imthedaughter]

I think the GPS watch sounds good but dad cannot move without help.He has a hospital bed so when he is in it no chance of escape..

You want a self answering phone also a self calling phone

I don't understand how these situations are possible to get into when it so clearly is against the PWD's best interests.

 

[TNJJ]

You want a self answering phone also a self calling phone

I don't understand how these situations are possible to get into when it so clearly is against the PWD's best interests.

Me neither.I did call dads doctor this morning and have told him that I’m handing him over and the buck stops with him.

 

[DesperateofDevon]

Oh yes! Lovely making poor decisions with consequences! Nobody in their right mind would want those consequences.But hey! They have capacity!!

Dad could understand the consequences of not being on a soft diet and choking.Then so be it..(Assessed at the home)But cannot use a phone or know his address.So that is going to be useful to get an ambulance to him should he need it..

I didn’t sleep last night through the beginnings of worry again.

I’m taking advice from my mum and people here.Plus my own.Stepping back..

keep stepping back lovely - for your own sanity & health. I know it’s a worry but you really have been left with other alternative
X

 

[TNJJ]

keep stepping back lovely - for your own sanity & health. I know it’s a worry but you really have been left with other alternative
X

Thanks.Phoned his doctor today and put him in the picture.Also care company.