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Sandwich Carer with young children

Chirpasdinner

Registered User
Jan 21, 2020
32
I know but this is her regular cpn who told me she had no capacity last week and asked her outright “ is this your home? ” - .” No” But yet she’s done a 360 and told me to now put in 24hr care at home instead because of this specific decision and to tell her this will cost more than a care home when mum believes the carers are her colleagues ? She also said the GP s recommendation has no sway and we must do everything ( ie spend all mums savings) to prove we’ve done everything we can . And once I do that i must ask ss to provide care in a carehome of their lists and go down the 12 week disregard route .
Thank you for letting me a note here in the forum / it’s teally helping me get my thoughts sorted . Ss rang and I got another “ hmm very complex” will talk to manager . Supper and bed softly thank you all .
 

canary

Registered User
Feb 25, 2014
13,890
South coast
Personally, I think you have been given very poor advice and help by the CPN. I get the feeling that they have very little experience of dementia.
Its not up to the CPN what care your mum has. It should be up to Social Services as they are the ones with a duty of care to vulnerable people.
Social Services do not recommend 24/7 care at home, although they will not object if you can afford it. In your case I dont think she can as her money will only last 6 months. Also, if it is any comfort, Im sure from what you have written that live in care would fall apart very quickly.
She needs a care home. Please, please contact Social Services and say that this is a safeguarding issue.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
So a little update nearly a month on - I feel well enough to write it down.
So we reinstated the package that day - rang all the people and I withdrew. My husband would answer the phone to mum requesting money to be paid to gardener , "yes we'd put £20 in her savings account" etc. We were pleasant but I would be " out" or "in the shower" Carers reported she seemed well, The Cpn agreed to go back and try again with colleague present to see if mum would agree 24hour care. The care manager rang mum up and introduced the idea of a 24 hr live in carer. Mum told the carers she did not want that. Mum was spookily well and no delusions although bag packing resumed.
So stalemate until the day the CPN was due to go back and then..
Mum was admitted to hospital that night with sudden breathing difficulities, the night carer called the ambulance on the advice of the nightline. By the time I got there the ambulance had gone and I had to put the night carer back together to assure she had done the right thing as mum had been hysterical.
Mum ended up on a covid ward as the symptoms presented themselves as covid induced pneumonia. I could not visit and ( you can guess where we live) the whole city was placed on lockdown. Two days running the clinician rang me and told me to prepare for the worst and they would make her comfortable if necessary. We all had to self isolate as her extended bubble including the children awaiting results of the test. Surreal. Awful.
Three days later , mum improved came off oxygen . She was kept on the covid ward until a third and final test was done. All negative - just pneumonia .On the first occaision a nurse facetimed mum from an ipad . She was confused but pleased to see me. The next day she was allowed to ring me alone from the ward nurses station ( I presume someone did it for her) and whilst sundowning started screaming and ranting at me how I had abandoned her, where was my ( deceased father etc), she was off to find a job, she didnt need a care home . I could not talk her down . It was traumatic. Eventually after begging her to find a nurse she rang off. My husband rang the ward back and asked them not to let her ring back unsupervised. Apparently she coolly handed the phone back with out a care. I had no words.

I| rang the duty team at SS and asked them to make a note on mum's file. We were advised that the geriatric team would assess her and the last I heard two weeks ago is that mum can give a good account of her self but is denying hallucinations and night waking.
I wrote a lengthy eight page email outlining our concerns/ the history to the ward doctor in charge of discharge and copied in the SS emergency duty team. I've even sent ated and timed mp3 recordings she made to our phone in feb saying there were no doors in the house I spoke to them and the said the hub referral would be picked up.

Apparently there are no social workers on the ward. Apparently mum is medically fit. I've rung / emailed everyone I can think of . Not much more I can say. She needs 24 hour care. There's a bed waiting at the private care home. I rang yesterday to check she is still there in the hospital!
I've booked a short break for me and the kids next week . I can't even speak to my mother or send a care package in - it has destroyed me is not an exaggeration. Thanks for listening.
 

canary

Registered User
Feb 25, 2014
13,890
South coast
((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
Such a sad post, Im so sorry.
I think going away for a short break is a good idea
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,220
69
Dundee
Oh goodness a sad post indeed. You must be emotionally wrung out. I’m glad you’re going away for break.

Wishing you strength.
 

anxious annie

Registered User
Jan 2, 2019
590
I have just read your posts, so very sorry to hear what you have been through and how badly let down by those in authority .
You can do no more for your mum. It is time to let others take over allowing you to spend time with your husband and children.
Have a restful break and come back determined to let SS be the ones to sort out care for your mum x
 

Frank24

Registered User
Feb 13, 2018
54
So sad to read your posts. I have felt very similar being fairly young to deal with some of the same issues. The stress of dealing with running someone’s life and your own is very hard. It’s good your husband is supportive but I know from experience what a strain it is on the whole family. Getting crisis calls one after the other from Your mum plus carers is a hell of a way to live. I can’t offer any advice, as my circumstances are different but I feel empathy for you and couldn’t just read and run.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
The saga continues... if anyone has any advice . My mother is STILL in the hospital . She is physically well and still steadfastly refusing to go into a residential home . So a best interests meeting was done over microsoft team s with the ward and SS and myself and the outcome was that it was decided mum had lost the capacity to decide her care but following the least restrictive option under the Mental Health Care Act. she would go home to a 24hr live in carer . She is socially compliant so need for section . I was first informed that the Covid fund would fund this for as long as possible and a week later told last week it will stop one week after she comes home. I'm now asked to fill in a financial assessment for ASC . Ive been told her case will referred to the locallity hub

Mum can self fund for probably ooh 10 weeks tops after the first 4 days of covid funding . I'm now left organizing the spare room and bedding in accordance with the carer agency contract. We will have to organise the spare room and pay for carer meals ( no biggie but will be a huge flash point of irritation for mum). She be confused bewildered and angry no doubt when she comes home next week. She'll do a U turn as soon as she sets foot home even though she may not recognise it !! All beautifully timed to coincide as my children start school again and I start a new job. They say if she does not settle it will go to the Court of Protection to totally override her wishes . And if she does SS will pay for 24hr live in care ???? I've been told all along this DOES not happen.

My sil is an OT says shes only heard of it once with " an extremely pushy family". God I'm just dreading next week. I can't even visit or explain anything to my mother because of her mental health , the pandemic lockdown and my mental health. Why do Ifeel I'm about to be set up to fail again by the authorities ? The ward doctor emphasised in the best interest meeting we should not be put under any stress.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
Well she's home . A mad scramble today this am to get the spare room ready as there was mix up over the discharge date. I left fresh flowers new bedding etc .I've not been back up to the house yet . I've hid all day in my house whilst the kids play online The care manager reports she's frail but weirdly accepting of live in carer on introduction . I'm waiting for my Dh to get home and we will say a socially distanced hullo in the garden and then I guess i'll stay for a cup of tea. maybe . Fear . obligation. guilt . what to do? How will this be paid for in a few months ? What can I say or distract with ? I'm imagining her relief at getting home is now overtaken by the irritation of a stranger.
 

lemonbalm

Registered User
May 21, 2018
844
Well @Chirpasdinner . All I can say is that I wish you strength and very much hope that your mum surprises you by being fine with this new arrangement. Postpone the worry about funding for today. One step at a time! I would probably talk about the garden and the weather for starters and tea is always a good distraction. Can you take cakes? Let us know how it goes.
 

anxious annie

Registered User
Jan 2, 2019
590
I just wanted to send my sympathy over this sorry saga which the authorities are dragging out.
I'm not surprised you don't want to deal with it, and you shouldn't have to.
IT seems likely that the carers won't be able to cope before there is a crisis, or money runs out.
Stay strong, and don't let yourself be dragged in to clear up the mess the authorities are making.
Sending hugs x
 

Sarasa

Registered User
Apr 13, 2018
2,002
So sorry to hear this sorry saga @Chirpasdinner. I'd try to stay out of the way as much as possible and don't be dragged in to sorting things out if it goes pear shaped.
 

MartinWL

Registered User
Jun 12, 2020
398
There are some really horrible stories in this thread and I have the greatest sympathy with all of you in such awful situations. Stepping back from the horror of it all though, what are care homes for? They are for people who need a lot of looking after and they are not dungeons with torture chambers, so I think too many are too reluctant to get these very difficult unwell people into the care that they really need. There is no need to feel guilty because you know you're doing the right thing for your loved-one, making sure they are safe and properly looked after. It isn't fair on you or your family if you have one to wreck your or their lives and when they were well your PWD would have probably said that they did not want to ruin your life. I know as one person relates above it can be difficult to get them into a home but often you might make a case that the person did not have mental capacity for the decision. Can they understand the decision, remember the pros and cons, and also, and I think this is crucial, weigh up the pros and cons of a decision? If they are not capable of weighing up the merits of a care home versus other options they they don't have mental capacity. Hard as it may be a bit more coersion is necessary for the PWD's own good sometimes.
 

Chirpasdinner

Registered User
Jan 21, 2020
32
There are some really horrible stories in this thread and I have the greatest sympathy with all of you in such awful situations. Stepping back from the horror of it all though, what are care homes for? They are for people who need a lot of looking after and they are not dungeons with torture chambers, so I think too many are too reluctant to get these very difficult unwell people into the care that they really need. There is no need to feel guilty because you know you're doing the right thing for your loved-one, making sure they are safe and properly looked after. It isn't fair on you or your family if you have one to wreck your or their lives and when they were well your PWD would have probably said that they did not want to ruin your life. I know as one person relates above it can be difficult to get them into a home but often you might make a case that the person did not have mental capacity for the decision. Can they understand the decision, remember the pros and cons, and also, and I think this is crucial, weigh up the pros and cons of a decision? If they are not capable of weighing up the merits of a care home versus other options they they don't have mental capacity. Hard as it may be a bit more coersion is necessary for the PWD's own good sometimes.
Yes I've no problem with this. I have a lovely care home and team all lined up I want mum to be in the care home but under the best interests meeting agreed that this was the least restrictive option under the law EVEN THOUGH THEY SAY SHES LOST CAPACITY. Because she has a spare room! In 11 days my mother will be paying for this and we are out of cash in 10 weeks. I now have to chase SS AGAIN to say ok you break it to her in a few months Ive spent her life's savings ! Her return was fine tonight . She was so pleased to see the children and Id describe her as pleasantly confused but very very frail . . Some strange stories of the hospital seemingly accepting of new 24 hr carer who seems lovely and professional . I do however have grave doubts . She wants me to pop in tomorrow after work... , Plus ca change , c'est la meme chose. I sound so heartless . I went for a swim. Thank you all for the support x
 

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