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Vent - setting Up new thread - MIL, SS, Self funding, GP

Champers

Registered User
Jan 3, 2019
228
I’ve discovered that mental capacity and how it is defined by SS seems to be as fluctuating as the PWD! When we were trying to get MIL moved from totally inappropriate domiciliary care into residential, I gave numerous examples to the authorities of how she clearly didn’t have capacity but, apparently, it doesn’t matter how confused or illogical someone is; if they appear to understand a specific question, even for a few moments, they are deemed to have it for that particular instant. Because MIL said she wanted to be in her own home and kept repeating it, according to the SW it was clear she knew what she wanted. I bet every single one of us here that care for a PWD can give an example of a constantly repetitive phrase that doesn’t have any basis or bearing on reality.

However, when it came to paying the bill for her care, it seemed that we were the first port of call. I was a bit of a ratbag and pointed out several times that they can’t have it all ways - MIL either had capacity or she didn’t, they couldn’t keep moving the goalposts. We both know the poor lady hasn’t a clue how to even write a cheque these days so for them to keep asking her to make decisions about how she wanted her care was ridiculous.
 

Champers

Registered User
Jan 3, 2019
228
When we suggest anything to stop MIL isolation we get the phrase "I'll think about it" it has become a family joke now :)

I’m a bit guilty of using, “Leave it with me - I’ll sort it” as a pacifier when there’s a frantic call from my mother about not having cash, cat food, paying the milkman...
 

TNJJ

Registered User
May 7, 2019
1,229
cornwall
What’s a Carers Assessment?
If you are caring for someone you are entitled to an assessment by law.I wanted more equipment for dad so I contacted SS and they asked me if I had had one.Mine was done over the phone by a Carer Support Worker.She goes through things with you and then they decide how much you are awarded.Mine is a one off payment for the year.You can decide how to spend it.They don’t ask for receipts.Mine is going on meeting friends and going to the gym.You can phone and ask Adult Social Services about it.I also get carers allowance.
 

Glokta

Registered User
Jul 22, 2019
62
Wow! I will do, anything that helps. Today I woke up with shingles - again, and have spent the day on my phone to mums bank, the local council to arrange to have two urine soaked sofas removed, and the Cinnamon Trust, trying to get help with mums dog. I didn’t realise you got anything for being a Carer. Except exhausted of course . Thanks for the info.
 

TNJJ

Registered User
May 7, 2019
1,229
cornwall
Wow! I will do, anything that helps. Today I woke up with shingles - again, and have spent the day on my phone to mums bank, the local council to arrange to have two urine soaked sofas removed, and the Cinnamon Trust, trying to get help with mums dog. I didn’t realise you got anything for being a Carer. Except exhausted of course . Thanks for the info.
No problem.There are people on here that know more than me So they will probably be able to help.I also found out there is a handyman service .You have to pay for this but it is reduced if you are on certain benefits.Im giving them a ring tomorrow on behalf of dad to fix a garage door.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Ah I now make sure that I get in the phrase “ just think about it “ beforeMum does; knowing full well that she won’t

How pathetic am I ?
 

TNJJ

Registered User
May 7, 2019
1,229
cornwall
I am in a bit of a quandary.As you know dad can only walk with a gutter frame ,but has been deemed to have capacity.(lol).It was decided by SS when he came out of hospital in2017 after a stroke that he would go home and have 4visits a day.Alongside that a keysafe!Dad sleeps in a hospital bed with bed rails to stop him falling out.(He doesn’t move overnight).He had a left sided stroke which has left him very weak.He has life line.I have stayed overnight to see how he gets on during the night.Now,my main concern is there is no overnight care.Is this not a safeguarding issue?He is locked in by carers at 18.00pm and unlocked when they come back at 8.45am.Dad has declined overnight care as (“I don’t need it”).I have informed the doctor in a letter ,and obviously the care company are aware.I know I don’t have duty of care.Any ideas??
 

AliceA

Registered User
May 27, 2016
2,706
That made me laugh @TNJJ
Shush, don't say that they may withdraw it, still made me laugh too. I was promise a direct payment last autumn, still waiting it would be quicker too produce a child! In my eighties so could probably retire on the proceeds of selling my story!
 

AliceA

Registered User
May 27, 2016
2,706
Thank you for starting this thread. I too am waiting, not the assessment but the action thought needed.
Now the needs have altered as they will.
We too are dealing with fluctuating capacity, sometimes it almost fools me. My husband is in hospital on Section 2 waiting a care package, I am hoping he is not bright and hosting when they judge what care is needed.
He can start well then flops completely, bless him.
Some Care Assistants suggest he needs a lot of care. Yet at times he seems spritely.
His logic sounds good but is not followed through. Hence he is hot, so open patio door but all night???
He looked at me as if I just did not understand!
 

TNJJ

Registered User
May 7, 2019
1,229
cornwall
Shush, don't say that they may withdraw it, still made me laugh too. I was promise a direct payment last autumn, still waiting it would be quicker too produce a child! In my eighties so could probably retire on the proceeds of selling my story!
:).You probably could
 

Rosettastone57

Registered User
Oct 27, 2016
1,170
When we suggest anything to stop MIL isolation we get the phrase "I'll think about it" it has become a family joke now :)
My mother-in-law used to say this as well. She also used to say she would do things "in the better weather ". Nothing ever changed of course
 

Glokta

Registered User
Jul 22, 2019
62
I get “ when I get turned around”. I think it means basically the same as when you say “we’ll see” to a child, ie, no, but with that added unsaid “ what do you think I am -an idiot?”
 

northumbrian_k

Registered User
Mar 2, 2017
970
Newcastle
Sometimes a person with dementia can not be bothered to do something or just doesn't see the point. At bedtime I would give my wife her nightie. "I'll do it later" she would say before climbing into bed fully clothed. "I'll put it in my handbag for later" was a common variant and could apply to towels, clothes, toothbrush and even a freshly used dog poo bag.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Mother kept turning the radiators off - so got in Gas man during service of boiler & had the room thermostats removed so I thought bingo! Problem solved
Wrong!!!!!
Out smarted again by Aged mother she just turns off the central heating at the mains.

Moral of story.....

You can’t win them all!!
Pick battles you can be sure of winning!

Guess that rules out GP, SS, funding then!
 

Bedllington

Registered User
Jul 22, 2018
17
Im glad i found this 'thread'.
SS came to assess mums capacity today, the gp refused to do this and said the practice doesnt offer this any more.
After a two hour visit SS just said to adjust the times the carers visit! She then said mum has no insight into her care needs and is unaware of anything being wrong, therefore lacking capacity. But because mum said she doesnt want to go into a care home, apparently she also has capacity! I feel like shes an accident waiting to happen.
She is self funding, so SS said that they cant offer anything else!
I mean.... for gods sake. I feel mum really needs to be in care, i have joint POA with my brother, who disagrees. He rarely visits and just talks about saving money. Im at my absolute wits end, emotionally and physically drained. I also care for my husband who has multiple sclerosis. I really dont know which way to turn.... aaarrrgggghhh!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Im glad i found this 'thread'.
SS came to assess mums capacity today, the gp refused to do this and said the practice doesnt offer this any more.
After a two hour visit SS just said to adjust the times the carers visit! She then said mum has no insight into her care needs and is unaware of anything being wrong, therefore lacking capacity. But because mum said she doesnt want to go into a care home, apparently she also has capacity! I feel like shes an accident waiting to happen.
She is self funding, so SS said that they cant offer anything else!
I mean.... for gods sake. I feel mum really needs to be in care, i have joint POA with my brother, who disagrees. He rarely visits and just talks about saving money. Im at my absolute wits end, emotionally and physically drained. I also care for my husband who has multiple sclerosis. I really dont know which way to turn.... aaarrrgggghhh!
Oh how stressful for you. The GP is the lynchpin in the care of your Mum. Capacity seems to be a woolly area
Take care of yourself & keep posting, you need to let off steam.
Can you contact the carers & arrange the care needed to make your life easier ?
Let us know how you are, just typing it all out here will help.
Hugs
Xxxx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I have set this up as a new thread in the hope that it will help show the sheer number of people who are at their wits end as carer's of PWD.
We all care "too much" and are hamstrung by the law which correctly allows people to make decisions about their health and well being, but does not really allow for as a previous post said "fluctuating capacity" . This dreadful disease leaves our loved ones to appear "normal" in short spurts (although I have noted that this is exhausting for PWD), whilst being anything but "normal" .
MIL presses her emergency call button constantly, OPMH have said they can't medicate her anxiety anymore, SS won't step in as she is self funding and has carer's 4 times a day but won't consent to an assessment for safety at home, the emergency call providers have just given us 2 weeks notice that they will remove the equipment as it is "being abused" and taking their call staff away from genuine calls, SS have asked the GP to carry out a capacity assessment. She has only been MIL's GP for a couple of months following the retirement of her previous GP who had known for at least 20 years and could see through her, but the GP only works part time so I have just had to leave a message with the surgery asking for the assessment to be done as a priority, but probably won't be looked at now until lunchtime tomorrow, so that will be a day and half gone of the 2 weeks. As the emergency button is MIL's only means of contacting the outside world as she can't use the phone to phone out (macular degeneration) she will be distraught and even more anxious, if that is possible.
She has refused constantly over the last 4.5 years that we have cared for her to engage in any sort of outside activity that would leave her less isolated - Age Concern, RNIB, her Care Providers, GP Surgery Memory Café etc.
Not looking for advice, just relieved to have been able to vent in an environment where others will understand. She really would be better in a home, better care, not isolated, better food, quicker intervention for medical issues, no worries about stairs, clean clothes and hopefully clean in herself, but as she is still deemed to have capacity and will not even tolerate discussion of moving out of her home we are stuck in this groundhog day situation.
When Mum was in hospital for 5 plus weeks she thrived on the constant company etc. Now she’s back at home & yes Groundhog Day!
Capacity is the issue!
I’m sure if I behaved like mum I’d be deemed not to have capacity