We left the UK in January 2011, we took 2 of our 5 children with us, one was living in Germany, the other in Reading and the eldest in a care home in Gloucestershire.
If you think putting a child into care is easy, think again about how difficult it is to move 1000's of miles away.
Our daughter is 28, she has been in care since she was 12. She is profoundly disabled and lives in a bungalow with one other woman and is staffed 24 hours a day, funded by Gloucestershire Social Services. She is profoundly disabled, wears nappies and needs 24/7 care as she is a risk to herself if left unattended. She can feed herself if the food is chopped up and she uses a spoon with a plate guard and can drink unaided out of a sippy cup. She has no form of communication, doesn't even make eye contact and recognises us only by our routines with her when we visit.
Contact and communication with her is impossible. We write regularly, send the staff emails, send gifts and when we visit the UK we take her out to see her siblings and other family members. Sadly we can't have her out over night any more as we don't have a base in the UK or anywhere suitable to take her. Family homes aren't appropriate, there's hardly enough room for us to stay and hotel rooms are too small, as she is rather active and needs a lot of space to wander in.
She is too old for ball pools and children's play areas, not mentally but physically and she does grab out at people passing by and small children, she has a particular fondness for long hair. If we go to cafe's or restaurants she swipes everything off the table and we often find the lack of disabled changing facilities difficult to go to other places, so we tend to stick to supermarkets where the ground is even, they have good changing facilities and a cafe without fancy table cloths for her to pull off.
Prior to us leaving the UK, we had her home every weekend and visited her in her own home 30 miles from ours once a week. When we left the UK, we didn't abandon her or our other adult children. She is unable to visit us abroad like the other children can, a car journey is difficult with her and she needs to wear a harness, to stop her climbing out of her seat, so a flight is impossible and not fair on her to pin her in a seat for 7 plus hours, let alone the other passengers.
It was her 28th birthday yesterday. We last saw her in September, my mum calls her once a month, but that's the end of family involvement with her, the boys only visit when they're with us, but to be fair, we can't expect them to take her out and change her in the toilets. It's also difficult to visit her in her own home due to the turn over of staff. Every time we visit there are new staff, new management, new contact people. When I write or email, it's to the staff not to our daughter, she has photos of us on her wall, but we truly don't believe she knows what she is looking at.
I called her last night to wish her a happy birthday, it wasn't a pleasant call, the woman who answered the phone just said 'hello' I said who I was and was phoning from Dubai to wish her a happy birthday and to enquire as to how she was. I came off the phone very upset that the member of staff had no patience for me, I even asked her if she could make an effort to tell me our daughter was ok and reassure us that everything was alright. But I could hear in her voice and her lack of interest in the call that she thinks we've abandoned our daughter, that we don't care, that she knows our daughter better than us as she works 5 x 8 hour shifts with her a week, she probably isn't the person who answers the emails. or is on shift when the post arrives or my mother calls. She has only been in the job since mid September as I didn't recognise her name. The management have made no effort again to fill the care staff in on her history and family background, they probably look at the pictures on the wall and see a forgotten family, a family they don't see, a family the care staff know nothing about and assume we've just dumped and run.
I started my working life with SCOPE, I've worked in care for many years, I've heard the staff gossip, I've heard the assumptions they've made as to why the family don't visit. I've heard the staff moaning about how the family, when they do visit just interfere and they're the ones who are looking after their children whether they're minors or adults and heard them say how the family know nothing about their own child and how on earth could anyone just give their child away.
I'm fed of explaining to people why our daughter is in care, it's no one else's business at the end of the day. I can tell you for sure that if Gloucester Social Services didn't think she needed that level of care they certainly wouldn't be funding her full time.
Yes we feel the guilt, which is self imposed, but there's no need for anyone else, however well meaning or just thoughtless they are to add to it.
We also have a child in boarding school in the UK and no we haven't abandoned him either.
Interesting reading your side of this. My mum is a carer for adults with disabilities, it is a very hard but rewarding job. Obviously ever individual has different needs. I'm sorry the staff weren't more forthcoming with you xReplyDelete
it's the turnover of staff that's the problem, they're not there long enough to get to know us in-between our visitsDelete
That must be very hard ChickenrubyReplyDelete
I'm sorry the person you spoke to last night on your daughter's birthday wasn't more supportive to you as a family
As you've worked in care though can you remember other good things about colleagues you've worked with? It's not all gossip about the families. There is also a lot of care, compassion, and kindness especially for the people being looked after themselves.
In some ways it is a lot to ask for more than this, although there should be more training in working with relatives in health and social care I agree.
I don't know how the conversation went last night, and I'm not criticising let alone judging, but I think I'd start off by saying thank you to the person involved in my loved ones care.
It's not easy or well rewarded work as I'm sure you're aware
every time we start to build a relationship with the staff they move onto somewhere new, too many agency staff is half the problemDelete
oh that’s horrible they assumed that. I don’t know what else to say, but wanted to say something. I hope they read this somehow and realise just how complex it is for you all. xxReplyDelete
it would really help if they appointed a key worker we could get to know and vice versaDelete
It shocks me how judgemental some people can be. It's almost impossible to look after someone with your daughter's disabilities in your own home and you'd certainly have no life at all outside caring for her. It's a shame that there isn't better continuity of care for your daughter though, but I guess the council finds that difficult to provide.ReplyDelete
we tried very hard to care for her and look after her siblings but we became so isolated from everyone else, it was also impossible to care for her needs and that of the families, let alone manage housework and mums taxiDelete
I am sorry you have to explain to people xxReplyDelete
it just never ends, this constant feeling to justify ourselvesDelete
This is a sad story. Thanks for sharing. I have friends with a severely disabled son. He will be 18 soon and they will be facing this sort of decision.ReplyDelete
i hope your friend finds the right path and support for their sonDelete
Hugs. I cannot begin to imagine how difficult it must be for you to live so far from your disabled daughter.ReplyDelete
This is upsetting to read but depressingly familiar. I have worked in SEN (SLD/PMLD) education for 14 years and many of our parents live their lives explaining to others that presume rather than attempt to understand. As I'm sure you're well aware, you are doing the very best for your daughter and should take great comfort in that truth.ReplyDelete
thank you, that does help a lotDelete
Having a step-son in care I understand a lot of this. It is hard for my husband to feel involved in his son's life because while his son S. recognises him as his Daddy, there is no real interaction, and when my husband visits it's mostly to sit in the corner and watch S play pc games/draw or some other such immersive activity that S wants him to have no part in. S is 17 but is very much the same as he was when I first met him nearly 10 years ago.ReplyDelete
My husband has worked in care before and has been appalled at the rapid turnover of staff. He saw some families who did seem distant to their children but, as with our own life, the reality is that families can be dragged down or damaged by somehow having to cope with such an insurmountable resposibility. It's horrible, and we all hate it, but S for one is so much better with being in care. His life is much more stable, he has made tiny steps of progress (compared to none/going backwards), and I think he is far happier. We all wish it were different, but we all do our best to cope in our own ways, and it can be so hard when people begin to question your own choices. However, I think we should always try to be patient with those who may not understand, where we can. Not to justify ourselves - no, to gently stand up for ourselves - but to educate and remind them that every family has their own struggles, particularly when it comes to severe disability. All the best to you and your family.
i agree we do need to educate people more, it just gets tiring having to do it time after time after timeDelete
I have to ask, why leave England if you use to see her once a month? Wasn't that important?ReplyDelete
we saw her weekly prior to leaving the UK, however as an adult now, like our other children, no one made us feel guilty about leaving themDelete
I can't imagine how hard it must be. But why leave England if you were able to see her once a week. That must have been important to you, even if not the life you imagined? Assuming you had no choice?ReplyDelete
we did have a choice but she's an adult as were the other 2 children when we left the UK and them behind and no one made us feel guilty about thatDelete
It sounds as if it is extremely hard for you all. Some of your comments were hard for me to read.ReplyDelete
it is hard, we just don't need others trying to make us feel any worse :-)Delete
Actually felt boiling outrage for your DAUGHTERReplyDelete
Feel enormous outrage for your daughterReplyDelete
I have to agree with comment above, why move overseas and such a distance too? It's so sad and I can understand why people would judge.ReplyDelete
no one made us feel guilty about leaving the two other adult children in the UKDelete
I would never ever move to another country and leave my child in a Hme :(ReplyDelete
hopefully placing your child in a home is a decision you'll never have to make, if you ever do then please get in touch and maybe i could guide you through the difficult decision that some of us have to make in our lives, judging other peoples decisions when you're not in their shoes is easy to doDelete
Am so cross on your behalf. I have a 16 year old son with similar difficulties, who, thankfully, we are still able to manage at home, but we are well aware this may not always be so. These people who are so quick to judge probably have no idea how much of your own life goes on hold when you're providing care at this level. Hold your head high petal. Those who matter, understand, and those who don't/won't understand, don't matter.ReplyDelete
thank you for your comment Beth, please do get in touch if you'd like someone to talk things through with as and when the time comesDelete
But you choose to move to a place that is 7 hours away by plane and you expect the taxpayer to fund the bill to magically provide the perfect care, I'm sure your daughters carers are doing the best they can, but if you aren't happy with it then move back to the UK and get involved or pay for private care.ReplyDelete
I don't expect the tax payer to fund our daughters care, she is proudly disabled and as a British Citizen by birth it is a right that she is entitled to. Social Services identified her needs as requiring 24/7 care, we didn't ask for 24 hour care and the government don't pay for things like this if they don't need to and just in case you were wondering or going to leave another comment, she went into care under a Labour GovernmentDelete
I hate the sort of judgemental attitude that the care home staff displayed: I know many families in Ireland who either have their children in care or are considering it. And for very good reasons. No-one does it lightly. I am still caring for my severely disabled daughter at home, and as commenters above pointed out: I don't have much of a life (except on-line TG) and am also constantly guilty because I just have not got enough time to give to my autistic teen and my 23 rd old and the house and all the other cr*p that everyday life involves. So you're not alone in your guilt: sometimes I feel guilty that I haven't put her in care, so that I could get a job and give more time to my other two...ReplyDelete
it's a very difficult decision to make, in fact all decisions are difficult when you have a severely disabled childDelete
Can I ask, why did you choose to leave the UK? Even though you have once child in boarding school here and another in care here.ReplyDelete
I think your reasons for moving are an important part of the story that you've left out.
i did reply to you on twitter but it would appear you deleted the tweets from your timelineDelete
Is there something preventing you from living in England with the two of your children that are there?ReplyDelete
Good article. I will face that decision in a few years. Child needs hoisting, is doubly incontinent and cannot move or speak. She is however what is called 'normal intelligence' so I have no idea how to explain to her that we are old, we are sick and one day we just wont be able to do it anymore. I'm also afraid she will be mistreated in Care Homes. There's no right answer.ReplyDelete
mistreatment was a huge concern for us, but it was something we really didn't need to worry aboutDelete
A very hard piece to read and I can only imagine how hard it was to write.ReplyDelete
Hiya- Thank you for writing this. I have children with less severe disabilities, and have also worked in care for many years- currently looking after the health aspects for several people living in care homes. The continuity of carers is a big problem, as is the assumption family not being there means they don't care.Delete
In terms of getting to know a constantly-changing pool of carers, one things that can be useful is to insist that 'phone call' time be scheduled every week, and written into the 'activities' part of your daughter's care plan. A weekly regular slot would help staff to prioritise contact, it also means you can plan for a quieter time.
I'm hoping that perhaps the grumpy lady you spoke to had competing duties, and might have revised her attitude by the time you next call. (If someone calls and takes a colleague away in the middle of handover, trying to cook, or struggling to get someone into a shower, things get a bit hairy- even the pharmacist or GP get snapped at)
It sounds as though your daughter would have no interest in phones- but, if you skyped or face-timed, maybe you might see her zooming past in the background while her carer updates you on her week? And if she relies on routines, a regular "look-it's your mum " slot may even, in time, become a familiar ritual in itself.
The other 'activity' that you could maybe get put in her care plan is 'letters home'. If you are sending her a letter or card - each and every week - to be a) read out to her (whether she understands it or not) and b) stuck up in her room, this is a very good indirect way of communicating to the staff that you remain involved in her life, and are very interested in what they do for her.
She will have a social worker at Gloucestershire (unless it's 'Duty') and a GP, hopefully a named one. I presume you already 'know' these two professionals by phone- if not, you can get to know them by phone. We all know SW turnover is way too high, but GP (& their staff) turnover is usually minimal.
For the GP, you can usually book phone appointments on behalf of someone who you're next of kin for (obviously only if they lack capacity to consult for themselves!)- say every few months, and the practice manager can make sure they have all your contact details at an appropriately prominent place in her health records so can they call you when/if anything important happens health-wise.
Your daughter should be getting annual scheduled visits from the GP and the social worker, on top of what they do for issues arising- and they'll need your input. The keyworker thing is important, though possibly a lost cause- but if you think your daughter needs an advocate, it might be possible to arrange this via your council eg http://www.thecareforum.org/pageindependent-mental-capacity-advocacyimca.html
Sorry if this is an information dump- but having been on the wrong end of "I'm sure the family care about this person, but how the f*** can I engage them from faraway, with no time, no management interest, and out-of-date contact details" it grieves me to see you in that position.
Gah. Did a giant reply and it went. Was a suggestion- having been on the wrong end of this siuation too many times (as the care worker trying to develop a professional relationship with a faraway family).Delete
Things that helped:
1) a regular agreed weekly time for receiving a phone/facetime/skype call so it could be put into the care plan 'activities' section- and not clash with, say, another resident's nice long scented shower time. The regularity & officialness of it being in the care plan helps staff to remember that 'call from Mum' is important
2) Even if the client has no interest in talking, the carers do like to know that someone, somewhere, remains enthusiastic and interested in the hard work behind any little successes or adventures that week
3) Physical mail EACH AND EVERY week- a card or a brief letter- to be read out to the client (which makes sure we read it too!), and stuck up in their room, replacing the previous one. It's a weekly reminder to us that you exist, are human, and part of the client's life
4) call the GP and make a phone appointment- and tell the practice manager to put your full details prominently in the client's notes so 'next of kin' will be on any letters or reports they send
5) Keyworker and management are probably a lost cause. Sending chocolate every few months as 'fuel for handover' is a bribe, but also a surefire way to ensure ALL staff- new and old- know your name ;-)
thank you, Misebandia.Delete
thank you for your reply, we have regular contact with gloucester social services, key workers and social worker turn over is as bad as the care staff in the home. we have been pushing for an advocate for over 6 years in regards to managing her financesDelete
Strength and love to you. It is clear from your article that your daughter is loved and would very likely be needing the same care wherever you and the rest of the family lived. I agree with you that continuity of staff would be so, so desirable and the lack of it is of course a function of how undervalued caring roles are (whether formal paid carers or unpaid family carers) in our society.ReplyDelete
I think you have no choice but to let the judgers judge in the hope that they will never need to walk a mile in your shoes.
we'll be back in the UK for july and August and will have to go through the whole 'hi we're her parents.....and you are' by the time they get to know us, we'll return to Dubai and on our next visit there will be new staff againDelete
I'm so angry that you are having to defend yourself to anyone about having your daughter in care.ReplyDelete
People are so quick to judge without ever knowing the full story, caring for adults is such an emotive topic and one many people fail to ever understand.
thank you for your comment AmandaDelete
Disabled children are hard work when they are small children, but as full grown adults with complex needs this is not always best looked after at the family home. I am sure the decision to put your daughter into care years ago was not an easy one, but the right one for everybody concerned.ReplyDelete
Try walking a mile in somebody's shoes before you judge them. As the mother of a disabled child I know how much hard work she was and what mine had was nothing in comparison to you
thank you elaine for your comment, life with a disabled child is hard enough without people judgingDelete