Help/Advice needed desperately...

[tangentc]

Hi all,
Posted ages ago in the new members section, and have just not had any time to actually post again.
I care for my Mum who is aging terribly. Her memory is going, affecting her functioning, but worse than that, she has fibromyalgia, crumbling spine, and has recently become almost entirely immobile and in agony due to a hip problem, currently diagnosed as hip bursitis.
This was diagnosed on Tuesday and again yesterday, Friday by two separate visits to A&E via ambulance. She's now had two failed steroid injections into the hip.
I am at a loss to what to do, as her GP is a useless turd, refusing to prescribe any stronger painkillers, despite the fact that dihydrocodiene, paracetamol, dicloflex and tramadol all taken together are not touching the pain!
I called the Community Nurses and left a message on weds as she urgently needed a commode, as she was screaming in pain by the time I'd half carried her to the loo in her ancient old house, but no one called back, so bought a commode on ebay and drove 5 hours to get it while a friend kept an eye on Mum.
I've called her Social Worker for an urgent review of her care package (currently 3 hours a week for domestic and shopping), who said she's on annual leave from this weekend, so will make an appointment in about 3 weeks or so! That's an eternity!
I've called my own social worker for a review of my assessment, and will have a phone interview in a week - And I don't even know if they'll be able to do anything to help, and I don't even know what they CAN do!
I've pushed and pushed for a referral to the pain management team, which will come through in 4 - 6 weeks, again, another eternity.
I just don't know what else to do for myself and my Mum. Myself because although, luckily, I only live 2 doors away, I'm now at Mums all day every day. Luckily at the moment, my 7 year old son is away, but he'll be home soon, and as a single parent, I will have to tend to him too, and school starts next thurs. My own home is like a bomb site - in 3 days I've managed to do a half bowl of washing up! - and there's no food or clean clothes for when my boy gets back. I've just not got time to go shopping, for both Mum and me. I haven't had a bath in days!

I just feel that there MIGHT be some help out there, but I don't know where! Like most carers here I guess, they didn't 'choose' to be carers as a career path, my expertise is in computer science NOT social care, hospitals, doctors, medications etc! I'm so confused, so tired, and just don't know what to do apart from sit down and cry on occasion!

If anyone has any idea who to call, how to get some help, or any advice at all, please please let me know, I'm at my wits end! They absolutely WOULD NOT admit her to stay in hospital.

I'm sorry if I've rambled and moaned on (I'm usually quite a positive person!) I just don't know what to do...

Thanks in advance,
Carolina

[SandySea]

Hi Caroline,
My heart goes out to you. I know how you feel, because I had a similar situation recently when I fell backwards onto my 87 year old mother who is in a wheelchair, and thought I had broken her knee and/or ankle. I wont go into detail, suffice to say that I spent all day and half the night with her at the emergency department and then couldn't get a doctor to prescribe strong painkillers and she was in so much pain that I couldn't move her out of bed for 3 days to take her to the toilet, so she ended up 3 days laying in a wet bed!!!!!!

Unfortunately I can't help you at all regarding where to go or who to see, because I'm in Australia, and any advice I could give you may not apply to the UK. But it's obvious you're going to have to make some tough decisions very soon regarding her future. You need to think about what's best for your Mum, for you, and most importantly for your son.

Is it possible, in the meantime, to contact the hospital and ask THEM if they could prescribe stronger painkillers? That's what I eventually had to do for my Mum, but it sounds like the painkillers you already have aren't helping. But heavens above, that's what hospitals are THERE for, aren't they? If her GP won't help, and she is in such pain, surely the hospital should be willing to help her through the time you have to wait for the social worker to get back. Or are there any other social workers that would be willing to take over the responsibility while she's away? Don't take any nonsense from them, punch the table and demand that you get help! You have to wonder what the world is becoming when the caring professions just don't seem to care any more!!!!!

Watching someone you love going through excruciating pain must be the hardest thing in the world to do, so my sympathies are totally with you. Please look after yourself and try not to get too stressed (so much easier said than done) and the only thing I can say that has helped me through many a traumatic time is "this too will pass"!

Blessings and hugs to you, Caroline. I only wish I could be of more help.

[SandySea]

Sorry, I didn't notice until I clicked the send button that your name is Carolina.

[Scally]

Sometimes you can demand admission through A&E or calling an ambulance and simply refuse to allow her to be discharged until the pain is dealt with.

[Caring_Mind]

Sorry to hear that you're situation is so frustratingly awful, Carolina!
Who was is who diagnosed Fibro and hip bursitis? It should have been the rheumatologist - maybe you can take her back there? Strangely enough, I have Fibro and have had bursitis in my hip - and I KNOW how painful it is! Bless her heart.
It may be worth trying Rob's idea -

Sometimes you can demand admission through A&E or calling an ambulance and simply refuse to allow her to be discharged until the pain is dealt with.

If nothing is sorted out, please, just come on here - at least you can rant about things and get your feelings out!

[Guest]

Apropos the care package, if you do not go to A&E and manage to get your mother admitted, telephone the emergency social services number and request/demand an emergency assessment, tell them that you cannot leave your mother alone but you cannot care for her without help as of now. If they refuse to help tell them that you are considering going to the local press, do not let it sound like a threat, just that you have no other option, that usually gets a response. If you take her to A&E and they refuse to admit and treat your mother the same strategy applies, the NHS also hates bad press. It really is outrageous that we have to go to these lengths to get care and treatment for the people for whom we care.

[tangentc]

Hi all,
Thanks so much for all the replies and support - it means SO much! Have finally been out food shopping - just had to risk leaving Mum for an hour and half (and felt like a pack horse afterwards!).
So that's one less thing to worry about...!
I didn't know there was an emergency social services number to call, so I will definitely be giving them a call shortly when I have a minute.
I think the worst thing is that my knowledge is so limited as to what help's available. It's also difficult as I don't usually have the nature to demand stuff - kinda shy and polite to a fault mainly!

And bless my Mum too - she is trying desperately to pretend it's not hurting so much!

It's just so frustrating, yes.
Okay, I'll be back later, thanks again for all the support and suggestions.

P.S. don't worry about getting my name wrong - I've been called many things lol

[Guest]

What you need for your mother is an emergency personal care package, help with getting up, washing/showering/bathing, dressing, toileting, medication, meals, putting to bed, etc. anything to do with her personal physical care needs which is not clinical, she is already known to social services so it should be easier and faster to have a care package put in place, they will already have her on record and some knowledge of her needs which clearly have increased.

[Scally]

I thought hard about that choice too, Parsifal: my initial reaction was go for social services emergency call out, but the fact that the primary emergency is pain relief made me change my suggestion to the NHS emergency services: the fact is that social services are good for emergency respite in say a nursing home, but whilst that may help the carer, it isnt going to do much for Carolina's mum.
Actually in most areas a hospice/pain relief/palliative care consultant might be able to help but lets face it, this is the b/h weekend and they are all off playing golf or having jollies until Tuesday, right? So all you will get is a bumped-up agency Polish SHO aka registrar on-call with bad teeth, worse English and a blunt syringe. Ouch!

[Guest]

I agree that the source of the problem needs dealing with along with maybe a change in medication to improve pain control but Carolina's problem is providing the care that her mother needs whilst she is in this degree of pain and her mother also has a number of pre-existing conditions as well leading to cummulative disability and increased care needs. The steroid injections will temporarily increase the pain once the local anaethesetic wears off, they are excrutiatingly painful for some hours afterwards, and they have not relieved the pain and the conventional treatment for hip bursitis is pain relief, anti-inflammatories, both of which Carolina's mother is taking, and rest so unless the bursa needs aspirating or there is infection which is rare I am not sure what else can be done other than provide the care needed until it resolves itself.