My friend’s mum has been seriously ill and in hospital for weeks. She spent weeks in intensive care, then the high dependency unit before going to an ordinary ward. Her mum was nursed one to one and then 1 to 3. In the medical ward she was one of 15 patients to 1 nurse. My friend can’t understand how one minute you need this level of care and then next the care has to be provided by family members. Now mum is coming home. Or rather she’s going to be taken home by my friend and they are going to turn the dining room into a bedroom. She needs rehab and can’t manage at home yet although hopefully the aim would be for her to go home eventually. There’s a loo downstairs and they are trying to think what to do about a shower or bath. They have a funny staircase so they don’t think a stair lift would work.
So when I went round there the other day I asked the questions: have you had the discharge planning meeting yet? You know so that you can sit down and work out what will happen, how mum will manage, what level of care she needs at home and what help they can give her. And then you should have an assessment too as a carer to see what help you need’. And of course the answer from her was a blank stare. I repeated myself and said look I happen to know about this stuff if they are going to discharge your mum home then both you and her should have a pre discharge planning meeting and an assessment of both your needs. You can say you’re happy to provide all her personal care, if you are, but that you would want some help with the housework in order to be able to run the house and do your job as well. All this was news to her.
What astonishes me is how people like this manage to slip through the net. My friend is articulate, smart and sensible. She is assertive without being pushy and won’t normally take no for an answer. We live in a local authority area with really excellent services for users and carers and no shortage of voluntary sector provision, although this is under pressure. She had assumed that she would automatically get everything she needed in the way of help without having to ask for it. So I have sat down with her and she has a long list of what she wants, what her mum wants and how she needs help with her family, her work and her home if she is to provide the lion’s share of the support her mum needs.
How does it happen that we go to pieces when we have to ask for something for ourselves? I am so assertive (maybe even rude?) when I am trying to sort out work issues but trying to get an appointment for the GP before the end of the month or to tackle my daughter’s awful teacher is an impossibility. I know I need taking in hand and perhaps it is the feeling of being out of my depth or anxious and worried for my child but I would sooner pick up a spider than speak to my daughter’s teacher about her maths homework and how none of us understood it (so that is my husband, him with a double first from Oxford and me with a BA and an MA both shuddering and juddering in front of Mrs X. Where exactly is the sense in that, pray?)
PLEASE UPDATE THE RSS FEED
1 day ago
10 comments:
Oh Ska I do get a sense of 'wow! me too!' when I read your blogs! I so know what you mean about not being able to challenge certain things in your life that you wouldn't bat an eyelid over professionally. It must be all the emotion that's invested in our personal lives; I often find myself these days on the verge of tears when arguing my case over something these days when I wouldn't have dreamed of being like that at work. Primary school 'numeracy' - ugh! It sounds like you gave your friend some really good advice - I have to say, none of those things would have occured to me either.
I've had to fight for everything for Amy since she was diagnosed with autism in October 2003. It's getting worse now because as she gets older, the experts whoever they are, think we can manage and have got used to dealing with her disability. I'm afraid we have to speak up, ask and ask again otherwise, unless by some miracle someone comes along and waves a magic wand, we very rarely get our entitlements. Best of luck to your friend, I'm sure she will cope with help and guidance.
Crystal x
I was totally unaware of the things you describe too, about the help you can/should get.
well if anybody ever wants advice about this stuff do ask me. I work freelance in social care & health and am an 'expert' in carers issues (so where you look after a family member, relative or friend who needs looking after through ill health or disability). I used to sit on the NHS regional board and do all sorts of very grown up things too!
but as for the other stuff - i think it's the guilt and the having to accept that I can't control it all, like my daughter's health.
Isnt it amamzing what reduces us to timid chidlren? I remember when my mother was dying of cancer I came back from France to see her in hospital and I discovered that no one had given her any water for 2 days and no pain relief except asprin!! I was so angry! Luckily for her we moved her to a hospice as she was too far gone to go home but I dread to think what she would have suffered in hospital!!
SO many wards in the uk seem to be staffed by auxillaries now, this was the reasont hat she was not given pain relief apparntely no sisiter to sign out anything stronger than aprin! Bizzarre. Thank goodness your friend had you to help her out!
The same thing happened when my Nan was discharged from hospital, but fortunately my Mum got Social Services and Age Concern involved and they put everything into place. If Mum hadn't been told by her friend, she wouldn't have known either and she had to keep asking and told them she worked nights (at that time) before she finally got the help. Makes me so mad.
And as for numeracy - aaargh! My niece is being brought up by mum and step-dad (who is a maths whizz) and even he told the school at parents' evening that the "new" fandangled way was too long-winded and how were parents supposed to help their children if they couldn't show them the methodology? Crikey - this is turning into a blog of my own!!x
We all need an advocate at one time or another in our life. Even the most capable and knowledgeable among us can fall to pieces when faced with making decisions such as your friend must make. It's such a good thing that you could be the advocate there!
The answer is always 'well the help is all there you just to have ask for it' - but how do you know how or what to ask. Had huge battles when my Dad was ill - so much to find out and so few people who seemed to want to help.
Ah, it's a nightmare getting what you need....thank goodness you were around to make sure she got all she was entitled to! I have been driving myself potty trying to get Mum sorted out....
And oh yes, indeedy, why is it we go all feeble with these flipping authority figures? I sort of collapse when I talk to James' teacher who is all of nineteen! I fear exactly what you describe - the horror that is maths homework... I thank heaven James is Ok at maths because I don't think he'll be able to get much help from either A or I!!
Gosh can so echo all that has been said here. So glad you were able to act in your Mum's best interests, I've been there too.
With more letters after my name than before you would think I would be as confident as anything. And I am, at work though I know I hide behind a professional skill. But to ask for help for myself or my management of the family...I've worn myself out dangerously close to a complete meltdown before now.And it's all self-inflicted.
So I'm not the only one, phew, that in itself is quite reassuring! Bonkers is normal!
Hooray, my new mantra..
A sympathetic friend
Patsy x
Post a Comment