There should be no financial distinction between
providing care for someone who wants to remain at home or someone who chooses
to live independently. People can't be forced into independent living because
they require a 24/7 care package when it is clear they want to remain at
home.
I am pretty sure many of you will be surprised and maybe even shocked to learn that Marie's residential placement did not work
out and that in August 2018 the Senior Manager of Marie’s bungalow gave our Council
28 days notice for Marie to leave their premises. Unfortunately I was not privy
to this information and only found out two weeks later at a Best Interest
meeting I attended when I was accompanied by two of Marie's ex carers, Ann and Sandra. Both had remained
friends and sometimes helped out when Marie came home for a visit. I had
shingles that day and didn’t feel too good so when I heard the news that Marie
had to leave in 14 days I was shocked and asked the Social Worker why she had
not informed me of Marie's proposed eviction. She apologised and said she’d
meant to tell me and then forgotten.
The Home cited Marie's 'unmanageable' behaviour,
screaming and screeching, saying that parents were complaining about her and
clients were afraid of her, as the reason for the eviction. I thought that was
very sad. They knew what they were taking on when Marie first went to live with
them. I was angry too because whenever I phoned to see how Marie was, I was
always told she was fine despite the obvious signs that 'fine' was far from the
case, However, after 19 months in residential care it was pretty obvious
Marie’s needs were not being met and that she was very unhappy. After the spate
of incidents and accidents and the palaver trying to obtain accident reports I
contacted Marie’s social worker for advice. She told me she had been advised to
tell me that I was to contact the Safeguarding Team.
Marie went into residential
care in January 2017 to an out of area home where she had spent respite
periods. She was 52 years of age with a severe learning disability, epilepsy, cerebral palsy, scoliosis and dysphagia and on the autistic spectrum. She had a lot to deal with. She hates to be alone and when away from home does not settle very well at night.
When I had first requested residential care the Council had ignored
our choice of home and put Marie up for tender with their own choice of care
homes.
I was horrified, and when nobody bid for Marie’s care package after
seven days she was put up for another seven and finally, and no doubt under
pressure from Marie’s story being on social media, she got to go to the home of
our choice – our choice only because it was a home Marie had been introduced to
8 years earlier by the council and one she was familiar with. Of course our
real choice would really have been to remain at home with the right support in
place but that had been denied and so due to my ailing health there was no
other option. Just like Marie's respite stay
the home would only take Marie on a
1-1 24/7 basis so she could have maximum support.
Marie developed a serious case of odema not long after she moved in. The GP said it was through lack
of mobility because every few weekends when she came home the swelling went down. Nevertheless she had to wear slippers for five months which must have lowered her spirits because she loved her specially made patent leather ankle boots and I felt so sorry for her. Weekends at home was also an opportunity to catch up on her sleep. After ten months when it was
obvious Marie wasn’t settling the owners suggested she try a different bungalow
more suited to her needs.
I flew
to Rome on a cheap four day holiday on the day Marie moved into her bungalow. She
was familiar with the premises because she went there a few days a week for
activities. It was a new beginning for both of us and I was looking forward to
the future. Nothing had really gone to plan since she had left home and I
hadn’t expected to be so involved in her care. It goes without saying that I
love her to bits and supported in any way I could but I was hoping we could
ease off the one in three weekends and
she would settle into her new home. One day I would be dead and there would be
no home to come to. I needed to see her settled.
There
were problems from the beginning. Although I met regularly with senior
management, the decisions made about Marie's care when in the office were not implemented
in the bungalow. I visited and took her out for the first few months but then
it was pretty obvious to all that she still needed home visits . I did make the
decision to stop accompanying Marie to the GP and other local medical
appointments in order for the staff to handle the situation on their own and
for Marie to get used to these visits.
It was
Marie’s home visits and I noticed one side of her hair looked thin and
scrawny where she must have been pulling it out. This was something she did in
her childhood and it concerned me. After we get home and Marie went to the
bathroom I was shocked at the bruising on her lower back. She was black blue
and yellow with old and new bruising.
The day before she was due to return I asked for a meeting with management. I had never seen Marie
look so wretched and I wanted to know why she came home to me with injuries
none of the staff had noticed.
Senior management were very shocked when I showed them photos of Marie's
bruising. I told them how sad I felt that these injuries had happened in
their care over a period of time and nobody had noticed.
I also
asked if they used body maps and accident reports and told them how they needed
to account for Marie’s injuries. If bruising goes unnoticed and then Marie
comes home to me who is to say that she wasn’t injured at home?
They said Marie reached to pull her hair out when she is agitated so I suggested
they ask all the staff when they see Marie reaching for her hair to very
quickly but gently take hold of her hand and rest it on her lap. If everybody
responded in this way it would help Marie break the habit.
I could see Marie's behaviour unravelling. She had so much to deal. A month
after she moved into the new bungalow one of her night medications was abruptly
stopped. Although it is entirely up to the home to ask for an increase or
reduction in medication, I was concerned there was no tapering – just an abrupt
stop. I asked the senior manager to allow Marie more time to settle in and for
the staff to get to know her before any meds were changed but she reminded me
that although I’d looked after Marie for a long time that she was in their care
now. Sometimes staff see medication reduction as a feather in their caps but if they're too hasty and don’t consult all involved
in that client’s care they are just naive and foolish and asking for trouble.
Not long after Marie’s
injuries she had a medication review with the psychiatrist and I was absolutely stunned to learn afterwards that two senior staff went to the appointment without her. Marie didn’t refuse to go, they decided
not to take her because she was unsettled. It was only 10 minutes from where she lived. Instead of Marie being the focus of
attention the senior staff used the appointment as a kind of tutorial with
senior manager showing the manager how to present clinical evidence. It’s a bit
of slippery slope there isn’t it? People have a right to attend their medical appointments but it seems those without a voice to speak up for themselves have no rights.. I wonder what would have happened if Marie lived
at home at the time and I didn't bother to take her to her appointment with a
psychiatrist because it was easier to go without her. It wouldn't even occur to
me - and the consequences aren't worth thinking about.
In mid July I collected Marie for her weekend at home and member of staff told
me Marie had a bruise on the top of her arm. She
said it had been whilst staff member was getting Marie ready for a shower and had pulled her trousers down from behind. She thought Marie had lost her
balance and fallen onto a chest of drawers. (Who undresses someone from behind, especially someone with cerebral palsy who is unable to stand without support?) The chest of drawers was on the
opposite wall to Marie’s bed and the explanation didn’t really make any sense
because of Marie’s cerebral palsy and unsteadiness I thought they would have
the sense to undress her when she was sitting down on her bed so she has a safe place to fall.
I was sick when I saw the bruise just below Marie's armpit and over the weeks I was given different versions of
how she was injured; fell over a chest of drawers, fell onto a sink whilst the support worker was pulling Marie's trousers down from behind. I was very upset at the
lack of concern. I was told she had cried
when she fell onto the floor, and that almost made me cry too because it takes a
lot for Marie to really cry.
I only wanted to see the accident
report so I could find out what really happened but I was told I couldn't have one due
to data protection and apparently that advice was from Marie's social worker. (Strange that the social worker did not contact
me to ask why I needed the report. She later told me she didn’t say I could not
have a copy, she had told staff it was their decision, so in other words she told them they had a choice whether to give me a copy or not!)
This is probably the stage where many parent's
would be frozen out of their son or daughter’s life, accused of interfering and being too over protective, all these derogatory terms thrown at us to make us feel bad when
in reality it’s the staff who have the problem because they don’t have or don’t
want to give answers to the questions we ask. They no longer feel they are
accountable to parents and that is wrong on so many levels. Marie
was crying out to be understood, for boundaries to be in place,
boundaries that could meet her needs and keep her contained and secure.
In my case I was still sharing the care even though
I would have liked nothing more than to leave them to it but they couldn’t have
it both ways, encouraging me to remain involved and then shut me out when it
suited them. I was still Marie’s voice and I wanted accountability for the
injuries she had received if only to see if they could be avoided in the future.
Accidents happen. Sometimes Marie’s got a bruise when she’s been in my care and
I can’t account for it. I didn’t see it happen, all I know is that she didn’t have
it when she arrived home but I will point it out to the staff when she returns and
tell them it happened in my care.
On the advice of the CQC which I passed onto the Home, I received an accident report by recorded delivery. the CQC asked me for daughter’s
details so they could check she was OK but I gave them no details of myself or daughter and told them I was confident I could sort
things out with the Home. (I've always been a dangerous optimist!) I assured them I’d get back to them if I had to.
And now after learning of Marie’s pending eviction
at the meeting there really was no alternative but for her to come home. Even
the staff said she would not cope with another move and needed to live with me.
It was a big step for me to take but by this time I felt Marie needed to leave
as soon as possible.
I ask myself what I could have done differently to make Marie's placement work because sometimes when clients are asked to leave a place it's often due to family dynamics rather than not coping with the person in question. Having said that there was no sign of Marie settling into the residential environment. .
I began arranging the house not only to accommodate
Marie but also her Carers. I had changed a lot of things around after Marie
left home never dreaming she would ever come back to live here. The large
dining table was dismantled and put in the shed and I bought a fair size desk
that took up a lot of space in the lounge. So now the table and chairs were
brought back into the house and my new desk went into the shed. Marie's bedroom
was transformed into a dining/activity room. In order to accommodate the Wake
& watch Marie was going to have the double bedroom so I gave my iron bed
away and bought her a double divan. She had new bedding and curtains. Perfect!
I couldn't wait to have her back!
Nearly two weeks after Best Interest meeting the
social worker rang me. She said she'd been asked to see if there was any way I
could reduce the 24/7 care package? If I
couldn't the alternative would be Marie going into Independent Living under the
Court of Protection. My heart skipped a beat. I asked her how she could even
suggest putting Marie through another move when her history was now
telling us it was doomed to fail. Marie had had enough and needed to come home.
Then it occurred to me that if they can apply 24/7 funding for Independent
Living why couldn't they provide the same funding for someone who chooses to
live at home. Wasn't it all about choice these days? Well, wasn't it? So I
asked her but she said it was a completely different care packages and full time
care isn’t supplied for someone living at home with family. I panicked and told her she would have to give me
time to process the news and I'd get back to her in a few days. (This is why I
prefer emails; they allow me time to digest the information.)
I have suffered with arthritis for years and had a
left knee replacement just over two years ago. I particularly suffer with my
hands, have cortisone injections in my thumbs and wear splints as I can barely
move my thumbs. At long last when I saw the surgeon on August 6th he
booked me in for an operation on first one thumb and then the other 6 months
down the line. My hand operation was set for October 26th and afterwards would
be in a cast for six weeks. I am now in a high state of anxiety about the
alternative suggestion to Marie coming home. With the 24/7 care package I could
have gone ahead with op despite Marie being at home but now I had been asked to
reduce the hours I decided to cancel my operation so I would be available to
fill in any gaps of care. Regarding the hourly reduction, there was nothing for
it but to ring Marie's ex Carers, now firm friends, Ann and Sandra. I explain
what SW had told me and asked if they could make up the hours from 4pm - 10pm?
I would cover the gap between 2-4. I told them it would only be temporary and
we could sort it out properly when Marie came home. I felt like I was being
emotionally blackmailed with Marie being dangled like a carrot - reduce the hours
or she won't be home at all. I couldn't afford to take the risk and I was
afraid for Marie's future.
The original notice for Marie
to leave in first week of September had been extended until the end of that
month. Of course we all know that the owners cannot put Marie out on the street
but if her behaviour was that unmanageable they could have call the crisis team
and had her taken into emergency care, which would likely are meant being
sectioned, but they didn't. Nevertheless I had been told parents were
complaining about Marie and residents were afraid of her and it broke my heart
to think she was in a place where she was no longer welcome.
My two volunteer friends were now
included in the care package but it didn't feel right, especially when the social
worker came to see me and offered them Carers assessments. She also told me
there were holiday forms if they wanted to apply for any leave. I'm thinking, Hey hang on a minute, you're treating them
as if they're paid staff employed by our LA and they are not going to be very
happy at your demands on their good will - and they weren't.
My emotions
were driving me to accept anything just to get Marie home but more and more
people were telling me I should insist on a full care package.
What happens if one of the volunteers was sick? Who
does the care then? I couldn't!
I was desperate for information and advice and so
one day I contacted The Challenging Behaviour Foundation CBF and told the
Family Support Lead our story. She immediately responded and asked permission
to contact an expert for advice about the request to reducing the care package.
The last Friday in
September the social worker rang me with a list of 4 agencies to choose
from. There had been no financial assessment and again I needed time to
process the information. I was worried that we would be unable to meet the
exorbitant hourly rate some of them were charging. I emailed the social worker and
asked her to send me the agencies details and hourly rates for consideration.
Adult Services had taken their time and now they were more or less asking me to
make major decisions overnight with no safety net for either mine or Marie’s
future.
On October 3rd on the advice of the CBF and Luke Clements Professor of Law & Social Justice at University of
Leeds, I informed
the council that it wasn’t viable to use volunteers and I wanted an
increase in the care package. I told them by reducing Marie’s hours from
original 24/7 assessment that they were breaking the Care Act.
The next day the
social worker rang one of the volunteers and tried to pressure her into doing
the 4-10 shift. She told her Marie was only coming home because they (my
two friend volunteers) said they would be part of the care package. My friend
rang me in tears apologising for letting me down but she hadn’t let me down,
there’d never been any indication at Best Interest meeting that volunteers
would be part of the care package. It didn’t even make sense! I put in a
complaint through the council’s ‘Have your Say’ and asked for a more
experienced social worker, someone who’d been qualified for more than a year
and someone with better communication skills and empathy..
It wasn't long before social worker’s senior manager rang me about my complaint. It's very insulting to
listen to someone who was not at the meeting insist that my two friends said
that they would volunteer to be part of the care package. I later obtained the
minutes which made no reference to any such commitment from my friends but now social
workers were closing ranks with some cock and bull story. My friends came to
the meeting to support me.
I asked this Senior Manager about the status of the care package and why the
delay. 'Oh that's gone!’ she said. ‘We'll have to have another best interest
meeting to decide Marie's future because if the care can't be provided at home
we'll have to look at other options'. My heart sank. I asked her what options
and she said that had to be decided at the next best interest meeting. I told
her that if she was referring to independent living that it was not going to
happen, that Marie would never cope with another move, but this woman was
adamant and we argued back and to. It was 4.30 on a Friday afternoon and I am
left to cope with the news that Marie's package had been shelved and nobody had
bothered to tell me. And now they were starting all over
again. These people know I am waiting for Marie to come home and that I've been
preparing the house for weeks but they couldn't care less.
November
November 5th we attended another
meeting where the eviction date was set for a week later, November 19th.
The owners had given Adult Services almost 3 months to sort out a package but they had dragged their feet and poor Marie was in Limbo so at this stage a firm date was necessary.
I won’t discuss what went on at the meeting because although all and sundry are
invited it is classed as confidential. I did come away with an agreed plan to
employ PAs to care for Marie at home. It was also agreed that I would get
volunteers for the week of 19th to enable Marie to come home on
eviction date whilst the care package was being set up. Getting volunteers for a
week was no problem and could run into two weeks if need be. That was more than
enough time for them to sort out the funding.
We brought Marie home after the meeting where she
stayed for four days. We took her to have her photo taken for her blue badge renewal.
She looked so worn out.
It was a Sunday afternoon
with just over a week to go before Marie came home when I had a call from the
home to alert me that Marie was recovering from a serious choking incident
after being given gammon for her Sunday lunch. (Gammon for someone with
dysphagia!) She was choking for so long that the paramedics were instructing
staff over the phone as they rushed to the scene. She choked for over 2 1/2
minutes when paramedics advised staff to lay Marie on the floor, which they
did, and she coughed the piece of meat up. God love her she must have had such
a shock and I wondered how much more she could take. I spoke with the
paramedics who were checking Marie over and they told me they wanted to take
Marie into hospital, suspecting she may have suffered further brain damage
through lack of oxygen. By then Marie was sitting quietly drinking a cup of tea
so I asked the paramedics only to take her if it was really necessary because
she would get further distressed and the chances were medical staff would be
unable to treat her. They said they would ring GP for advice and he (GP) called
to the home soon after to check on Marie and although she would not let him
examine her, as far as he could see Marie was fine.
Thank God she would be home in a week. I was
counting the days.
7 days to go
The following morning I had my first appointment with a solicitor at Broudie Jackson Canter. I found this
particular solicitor's details on a list The Challenging Behaviour Foundation gave
me. This solicitor had been monitoring developments over the weeks in case they
needed to step in to represent Marie or myself. I was very upset and concerned about the serious choking incident and told her so. I then explained how I had agreed to get volunteers to
cover Marie's care at home from the eviction date on 19th just in case care package took longer to set up.
The only volunteer shift not covered was 8am-1pm but I wasn't panicking because
I still had a week to organise this and the 3 other volunteers had agreed to
extend their hours if necessary. The solicitor was concerned the responsibility
for providing the care was left on my shoulders and asked if it was OK to write
to our LA to see if they could provide agency cover from 8-1. I agreed.
6 days to go
I met with volunteers at my house
5 days to go
Meeting with social worker and lady from Direct Payments so we can go over Agency/PA
funding Also present were two of the volunteers.
Social worker told me that although they
had no intention of stopping me from bringing Marie home the following Monday
they would not provide the 8-1 agency cover because they felt Marie was in a
place of safety and wanted to persuade the owners to extend the eviction date.
If the home refused to keep her any longer then social worker would send her to
respite.
What respite? I asked her but she didn't know.
The only respite poor
Marie would be offered would be under a section because we both knew nobody
else would take her. After all Marie had been through I thought it was very sad
that she even considered such a thing. But then they wanted Marie to live independently anyway so what did they care?
I told her Marie was desperate to come home and now that she had confirmed at the meeting that our LA would not provide 8-1 cover I would sort it out myself.
4 days to go
Spent early morning ringing around agencies and finally found one that could
cover the 20 hour a day support. I emailed social worker with the good news.
She responded by saying that she was not happy with only three volunteers and
that there was no contingency plan. Oh my God, I thought, what more can I do? She
also told me they were considering putting Marie under the Court of Protection
to prevent me from moving her until a care package was in place.
3 days to go
The Court of Protection
At my wits end I sent social worker an email and linked her team leader.
'Can you please confirm if you have
actually applied to Court of Protection for Marie to remain at the Home?'
There was no reply from either of them. I suppose that information was for them to know and for me to find out. However at
teatime that Friday my solicitor phoned to tell me she'd received notice that
Marie had been put under the COP a few hours earlier. It was about 4.30 so what could I do? I had made arrangements to bring Marie home the next morning for the night but the solicitor advised me to cancel in case Adult Services thought I
might not take her back. I followed her advice and cancelled. I was asked to
go in and see her first thing Monday morning so she could go through papers
with me, take my instructions and discuss getting a barrister.
I was devastated
and so worn out. Why on earth the social worker took those drastic steps I will
never know. There was just no need for it!
That night I went to bed at 8.30. It had been such a long day and ended so miserably that I was glad to shut out the world. At 9.30 my
phone rang. It was a member of staff from the Home to tell me Marie had fallen
and banged her head on the wall. They had called the
paramedics out to her again. Paramedics twice in six days and to think that in 3
days time Marie's COP enforcement took effect for her to remain at the home. There
was no more sleep for me that night..
I am mindful that in the beginning the Home were coming from a good place. As
the eviction date passed and one month turned into 3 they had every right to
call the crisis team to find emergency accommodation but they knew Marie would
likely end up being sectioned and they would not send her to the point of no return and that has to be acknowledged - and for that I will always be grateful...
Yet the social worker was adamant that respite would be found if the Home
couldn't keep Marie after the 19th, knowing there was no such thing.. That was one of the reasons Marie left home in the first place and why
she ended up going out of county. Her challenging behaviour left no doors open
to her and that is why most people with challenging behaviour often end up
living out of their own county and miles away from home.
I phoned the home early the next morning to see
if Marie was OK. I told the member of staff I would be there in a
couple of hours to take Marie for some lunch.
I had been called in to see solicitor at 10am on Monday and so that Saturday
after a hectic week I planned to prepare for meeting by organising my paperwork
and photocopying relevant stuff but now that I was visiting Marie I would
have to cram all my preparation into Sunday instead. The drive is about 36
miles and takes about 40 minutes.
I spoke with the staff when I arrived and when I was about to leave with her
the deputy manager told me Marie had bruising from the choking incident. I
didn't think they would be too bad, nobody had notified me of any injuries and
after all they were six days old.
We went to our usual haunt and I took Marie to the supermarket toilet before we
sat down to eat. You must all be tired of hearing me say how shocked I was to see Marie's injuries but when I saw the bruising that day that she had sustained a week ago I gasped. Marie began to whimper as if she was glad that someone had acknowledged the pain she had endured. And nobody had told me. It was inexcusable...
Usually if something is wrong I manage to console her but this time nothing I
did could snap her out of the mood. She was whimpering and by the time we got
into the cafe there were tears rolling down her cheeks. I'd left her at the
table like I usually do whilst I went to order. She was near enough for me to
keep her engaged by telling her I was getting the fish & chips but she
continued to cry. I left the queue and brought Marie back into the line with me
but she still seemed fed up so in the end I abandoned the idea of a meal and we
left the cafe.
I wheeled Marie into the supermarket wondering where else we could go and what
else we could do. I tried unsuccessfully to cheer her up, dropping her
favourite egg custards and crisp into the basket but she wasn't interested
and was still crying.
Why was her life such a misery - our lives such a misery. She'd choked on the
previous Sunday and had extreme bruising that nobody seemed concerned about and
whilst in the midst of these injuries they'd gone ahead and given her the flu
jab and two days later she'd fallen and banged her head on the wall. It was too
much to cope with in one week. And now we had the COP to look forward to in
order to stop me from removing Marie from the 'safety' of the home.
We must have looked a right pair. Marie was crying and my eyes were filling
with tears at the thoughts of taking her back to the Home. I suddenly made a
decision and took Marie outside to the car whilst I sat in the passenger seat
with the door open and rang the home.
First of all I told support worker how shocked and
upset I was to see the base of Marie's back was black and blue, also her knee
had a huge bruise on it. I told her I would have visited sooner had I been
informed at the extent of her injuries, even though I had been busy organising Marie's home care all that week. I asked her what kind of mother would I
be if I brought Marie back to her in such a distressed state? I told her I was taking Marie home
overnight for a bit of TLC and would bring her back the next day. The senior
staff member, who worked in Marie's previous home, was very nice and said she'd
have medication for me to collect on our way home.
When I clicked off the phone I looked at Marie and asked her if she wanted to
go home and the look on her face spoke a thousand words.. I couldn't resist
snapping her with my iPad.
Of course I took Marie back the next afternoon. After
a good night's sleep and batteries recharged I told myself things would soon be
sorted. I had an agency on stand-by and volunteers to support Marie at home
until package was set up. There was no reason on this earth for social worker
to take those dramatic steps and put Marie under COP but to be honest after all I'd been through, I was
looking forward to my day in court with them and sorting things out once and
for all - and they knew it.
With Saturday and Sunday spent taking care of Marie I was unable to prepare for
my solicitor's meeting the following morning so I got up at 2am and with very painful hands I printed off and organised
papers and before I knew it I had to leave for my early
morning appointment in the city centre. It was November 19th final eviction day
and COP day. And I probably needed to retain a barrister!
I was tired and didn't feel too good as I took the lift to her office. Solicitor was
very good fitting me in at such short notice and I valued her expertise and
guidance. Who'd have thought that at the age of 65 - and Marie 53, we would be
fighting for Marie to come home? If I'd have accepted Independent Living we'd
have had none of this nonsense, but Independent Living was what the Social
Worker wanted and not what Marie wanted. Marie wanted to come home and I was
determined for that to happen. It was my last fight; I just hoped it didn't
kill me.
I was shocked and disgusted when solicitor went over information she had received
from the council about why they had applied to COP. There was an
omission of relevant facts and an insertion of inaccuracies. I will not
disclose any of the content except to say I was made me out to be a really
awkward person who 'refused' to do this and 'refused' to do that. Someone who
was going to bring Marie home on the 19th whether I had the Care or not! Why
would I be fighting for a Care package and bring Marie home without adequate
care and support? I had the volunteers for that week and the following one if
necessary. I also had agency willing to take on the whole package. I'd done all
the donkey work for them. The only problem was a bureaucratic one. The person who wrote that statement committed perjury.
After an hour and a half with solicitor we were bringing the meeting to a close. I switched on
my phone and there were two emails from the social worker acknowledging the
agency I had found and the other saying she was arranging the Care package for
Marie to come home that day. I showed the solicitor the emails and the smile on
her face reflected the relief and happiness I felt at that moment. Social
worker wanted to know what time I would be back at the house with Marie so
agency could meet us there to do an assessment. I was meeting my friend Ann in
city centre so I told social worker I would be going with Ann to collect Marie
at 2.30 and would be back by 4.30 to meet agency.
It was still teaming rain when I left solicitor's. First I rang the Home to say
I'd been told by social worker that Marie could leave that day and that I would
collect her at 2.30, then I ran to meet Ann to tell her the good news.
When we arrived at the Home they had not bothered to pack the last of Marie's belongings. The manager told us that social worker had not informed them that Marie
could leave. I was beyond being messed about, having people playing ping pong
with my emotions, so whilst I had a further discussion with the Manager,
showing her the social worker's emails confirming Marie could come home, Ann went
into Marie's bedroom and began to pack the last of her things.
Despite having a
three week supply the manager would only give me 3 days medication, which was
not at all helpful, but not untypical of her attitude. It just meant Marie
would have to be registered with and see our GP within the next couple of days.
Marie left that rainy afternoon
without a goodbye from anybody. It had been a long day and was such a relief to
get home. It was a lovely feeling taking Marie’s hand and walking her into our
home – a home where where she is going to stay.
When Marie left home nearly two years ago it was
because I was not well enough to look after her and not because she was
unmanageable.
My constant request for more support was rejected and I managed for as long as
I could with 18 hours a week and no respite. Now it seems we've done a full
circle, with a lot of unnecessary trauma and heartache along the way only to end
up with the care I originally asked for. Why do they make our lives so
difficult as if every penny awarded to us comes out of their own bank account.
I am thrilled, thankful and oh so relieved that
Marie is living back home where she belongs. Her hair is growing back and she does not choke as much because she is not so exhausted, sleeping at night and not during the day. We've had loads of advice and support from professionals, some new and others we were already familiar with..
I have to tell you
I will always be grateful to The Challenging Behaviour Foundation for
their advice and support and to our solicitor, too, for her kindness and
expertise.
There should be no financial distinction between providing care for someone who
wants to remain at home or someone who chooses to live independently. People can't be forced into independent Living because they require a 24/7 care package when it is clear they want to remain at home.
Every persons individual needs and wishes should be assessed without any prejudice or preconceived ideas and the powers that be need to be asking themselves every time they meet a person with special needs, whose life is it anyway....
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