Oh for crying out loud...

[jenniferpa]

So, mummy's in the hospital. Had X-rays: no fractures (although we all know how reliable that can be). Presenting symptom: won't bear weight on one leg. Now, they tell me that they are waiting for an assessment by physios. Of course, this is unlikely to take place until Tuesday at the earliest. Even then, what are they going to do? Give her some exercises? I really don't see what good that's going to do if the leg gives way at random times. Yes, she's scared to put her weight on it, but as they don't know why it gives way (and she has been walking on it prior to this) even if they get her to start putting weight on it, when it gives way again, as it probably will, we're back to square one. The icing on this particular cake is that when she was taken to hospital, her medications didn't go with her (probably - I'm waiting for confirmation about that) and the hospital pharmacy has been closed all day, so no way to get her meds! Can you believe this? It's like dealing with the key-stone Kops version of a health system. Assuming the meds didn't go with her, and they haven't lost them, I'm going to get the carer to take them down to the hospital, but I find the whole thing quite incredible. I can see myself getting on a plane very soon - not because there's anything seriously wrong, but because if I don't, they'll keep her there indefinitely, with her getting more and more confused.

Jennifer

 

[Skye]

Jennifer

No answers, just lots of sympathy. It must be dreadful, trying to cope at a distance. How they managed to forget or lose your mum's meds is beyond belief.

I do hope they manage to find out what's wrong with your mum's leg without you having to fly over again.

Stay strong.

 

[Grannie G]

Dear Jennifer, It must be so frustrating for you to be so far away and have no available imput. I know I`m stating the obvious, but I just had to make contact and sympathize, even if I can`t offer any solution.
I could go on to deride the health Service, but there is no individual to blame, it`s the fault of whole system. What began as ideal, has become overburdened, oversubscribed and the funding hasn`t grown with the demand.
I hope your mother will be OK. Love Sylvia

 

[jenniferpa]

Well, they haven't lost them, thank goodness, so my mother's carer (who, frankly, is in the running for sainthood) is going to take them down at the end of her shift, although I've told her to call first, to make sure they haven't manged to find a pharmacist. What gets my goat is, she was there this morning, asked if they needed anything and according to them, everything was fine! However, the man I spoke to told me that mummy was so confused this morning, that she didn't even know her own name, although they told Michelle that she had been fine. The only plus point about this, is that at least one person is aware that she's confused! I'm sorry, I know the USA is a litigious society, but the advantage of that is they'd make damn sure that a hospital patient had their prescribed medications, becasue they know they'd be sued if something happened. Mummy takes BP meds, anti-depressant and seizure meds, none of which should be discontinued suddenly.

I'm still not convinced that we're not going to hear the dreaded words - hip fracture. Michelle says that the pain as reported by my mother sounds like that, and she's had experience of this. Is there anyway I can make sure that the x-ray film has been read by a competant professional? Why do these things happen on a bank-holiday week end anyway?

Honestly, if it wasn't my mother, it would (almost) be funny.

Jennifer

Edited to add: about the only good thing to come out of this is it's taken my mind off my own problems: 2 days ago I was walking the dog and managed to fall flat on my face, knocking the wind out of me, and bruising my sternum. Certain amount of difficulty getting up, as I fell downhill, and the dog thought it was a new and exciting game! It's been hurting A LOT, but this whole thing has taken my mind off it.

 

[Skye]

No, Jennifer, it's not my mother, and it's far from funny. It's scandalous.

I can't help with the x-ray - everything seems to close down for a fortnight here, so plan your ilnesses, falls, etc. accordingly!

You're lucky you have such a good carer for your mum, but I don't suppose she has too much clout with the powers that be.

Keep us informed.

 

[jenniferpa]

Does anyone have much clout? I've just spoken to her again - they still haven't been able to find a pharmacist, so Michelle's going to deliver the meds. When the dust finally settles, I'm definitely going to formally complain - if you can't get drugs in a hospital, where can you get them?

I am very much torn at the moment. I want to be there, although I doubt I'd do much good, but I have family commitments here, although, in the scheme of things they are less important. Also, of course, last minute flights cost a fortune, and I have college fees for my daughter to pay this month. However, I don't want to rush over and then be twiddling my thumbs because she's still in hospital, on the other hand, maybe if I'm there I can get her OUT of hospital. Ho hum - decisions, decisions.

Jennifer

 

[Skye]

Ho hum - decisions, decisions.

Jennifer

Quite right, Jennifer. I don't know what I'd do in the circs.

As an outsider. I'd say wait until the dust settles. I was going to say 'your mum's in good hands'. Maybe not so, but she's warm and cared for, and she will have her meds. Your family need you too, and I don't think they're less important.

Can't make the decision for you, of course, but try not to make it in a panic. Things may look better in the morning..

All the best,

 

[jenniferpa]

Yes, well, panic is my middle name

I do wonder, though, if I'm not there, if they will find it so easy to slough off their responsibilities. In the past, my eagerness to remove her from a setting that she finds very distressing has meant that she hasn't had the formal follow up that she should probably have. Specifically, not once has she had the MDT evaluation that she should have had, because I think they find it easier to pass it off to me to cobble something together. Perhaps this could have a positive outcome (or maybe I'm just kidding myself).

Jennifer

 

[Skye]

You may be right. Are they not supposed to arrange an SS assessment before discharge? A proper care plan would give your mum more continuity of care, (and you more come-back if things go wrong).

As for the panic an excellent GP I had when I was suffering from acute depression over 20 years ago advised me to 'never make an important decision when you're on a down.'

Needless to say, I didn't follow his advice, (and regretted it!) but I've always remembered it, and try to apply it as much as possible.

 

[jenniferpa]

Right, I'm an idiot - I typed a long post and then closed the browser before I posted it (perhaps I have something on my mind )

Hazel, yes it is my understanding that they're supposed to do an evaluation before discharge. In 3 hospital stays, the only people I have ever seen do anything towards this was an occupational therapist. The last time she was in hospital, first of all they said she didn't need an MDT, which I believe is used especially in situations where after hospital care is complex, to yes she did need an MDT (when she showed more than usual signs of confusion) to no she didn't. This was in the space of two days - talk about head spinning. The carers are particularly concerned that she is essentially alone from 9 at night until 8 in the morning, and I don't blame them. She has a multitude of call bells and pendants, but will she remember to use them? Answer: no.

Although I'm trying not to cross my bridges before I come to them, I wonder whether she should move into the nursing home at least temporarily. Unfortunately, she is extremely and vociferously averse to doing this. Alternatively, I could come over and stay with her a while, but that is definitely a short-term solution. If she continues to be unwilling/unable to bear weight, I think she'll have to move to the home. How in god's name do you deal with someone who is continent, needs a wheelchair AND needs to go to the bathroom every 45 minutes (those darn diuretics)? In a way, it would be much more straightforward if she was incontinent - at least there would be a rationale for continence products. As it is, she's still sufficient compos mentis to resist such an idea.

Jennifer

 

[mel]

Hi Jennifer
sorry to hear you're having these problems with mum......
my mum is in hospital at the moment .....She fell while having a respite stay and was taken to hospital.....she was sent back to the respite home after her x ray showed nothing was broken....the next day she was called back after they'd looked at the x ray again and a broken hip was diagnosed....she was operated on the following day.
2 weeks after the op and she is still not able/willing to put any weight on her leg.
On Thursday I was asked by a nurse what sort of extra care I will want at home in order to look after her( .......hang on a minute......how the he*l do I know what she needs as no one can be bothered to let me know what's going on)
Evidently "sister" wants to know this and "sister" suggests a permanent nursing home may be the solution for the future. It would appear "sister" does not have a voice of her own......
This floored me a little......having spoken to the physio the previous day who informed me they would get mum as mobile as possible......
I feel as if they have given up on mum.......
I'm now waiting to hear from mums social worker.....I've asked him to intervene.
mum continues to be a difficult patient....refusing meds unless I'm there....refusing BP checks unless I'm there and is eating very little.......
I am so frustrated by the lack of information .
I feel quite pleased for mum that she is doubly incontinent......another lady in the ward requested a bed pan the other evening and,because it was not that long since she had used one, she was kept waiting for 20 minutes......she was then left for 10 minutes after she'd finished.This lady is 94 and compus mentis.
Where is the dignity in that?
Sorry Jennifer.....I have ranted on a bit on your thread.......
Love xx

 

[DeborahBlythe]

Yes, well, panic is my middle name
No it isn't, Jennifer. I don't think so. You seem a pretty well-composed individual, from all the postings of yours that I've read.
I do wonder, though, if I'm not there, if they will find it so easy to slough off their responsibilities.

That's a very generous thought Jennifer. You reckon that your influence is causing the professionals to relinquish their responsibilities and that when you take more of a back seat, they will suddenly assemble themselves into a rational, efficient and sensible outfit? You have a very kind nature to think that.

Things do go right of their own accord sometimes, but its usually the random monkey-let-loose-on-a-keyboard-producing-Hamlet-once-in-a-few-thousand millennia scenario, in my crabby and cold hearted opinion. Not a slur on individuals, just on an over worked system. That goes double for Bank Holidays, by the way.

As for who has clout, in the hospital system, well you could try disinterring the PALS officer for the hospital, who can sometimes be surprisingly useful at pulling threads together. Failing that, I think I would insist in speaking either to the Ward Sister, or to the Consultant ( or their locum) who is charge of your mum's care, and ask, with all the restraint you can muster, what plans are being made for an MDT. I think I would come over, if I were you but bring your laptop so you can keep in touch with us. . Make sure your sternum is OK before you travel. You don't want to spend time in our A and E's.

Your mum may be OK, after discharge, cared for in her present home, but with the input of District Nurses and other community professionals and increased levels of care support. What is nagging in my mind is that your Assisted Living-type home may say she HAS to go into their nursing wing, as they can't cope with her in the usual place. Are they not sniffing around trying to take a view as to what she may need in the future? When my mum was 999'd into hospital, the representatives of the home whizzed up with indecent haste and proclaimed that she could not be readmitted back to the home even though the hospital could only find traces of indigestion, not anything worse. I'm not trying to scare you. I'm just thinking through what happened to my mum.

The other thing that occurs to me is this, and please forgive me if it is less than terribly helpful. Is there any way you could bring your mum closer to you? It's a pretty intolerable strain trying to keep an eye on your mum even when she is twenty minutes down the road, but from your distance you are having to place a helluva lot of faith in people and systems you can barely influence. As you know, the Assisted Living model is very big in the States, and you might have more choice and certainly more influence there than here. Please forgive if this has just added to your worry. I'm very sorry, and wish you and your mum good luck.

 

[jenniferpa]

Thanks Deborah.

All these scenarios (and more) have crossed my mind. Taking your points in no particular order:

I do think I'm being over optimistic re the effect of me not being there - even when I have been there, getting her released from hospital has been like wading through molasses. However, you never know (duck - there's a pig flying overhead).

I think her carers are genuinely concerned about her. Apart from anything else, they can't refuse to have her back - she owns her apartment. In fact, I was the one to raise the "moving to the nursing home" scenario. From a purely financial point of view, they're making more money from her staying in her apartment than if she moved to the NH - the fees I pay for domicillary care and everything else are about £50 a month less than the nursing home fees would be. The nursing home is essentially split into 2 parts - the very ill part and the not so ill part. Unfortunately, if Mummy has to go to the home for anything, they normally take her in through the closest door which leads through the very ill part, so I'm not surprised she is less than enthusiatic about the idea. Having said that, the bedrooms in the other part are identical to her own bedroom, and while I like the idea of her having a separate living room (as she does at the moment) the fact of the matter is that her world has shrunk considerably, and she rarely comes out of her bedroom.

As for moving her over here - well I run through this on a regular basis. These are the steps I would have to take.
1) Become a citizen - the only way I could get her a visa
2) Come back to the UK and take her to London for the visa interview
3) Assuming all that goes O.K. book passage on an ocean liner (she cannot travel by plane any more)
4) Drive from the port to home
5) Since I wouldn't put her in an assisted living place if I'd brought her over here - get the builders in: my house is 3 storeys, with steps everywhere, so I'd have to build on.
6) Hope she didn't become sick. This last one is the killer. I cannot get health insurance for her (and I've looked), so she'd have to be self insured. My MIL spent 2 weeks in hospital following a stroke - $258,000 and the bills are still coming in. She's insured, my mother would not be. It would be one thing if it was simply a case of spending any money she has, but to get her into the country, as her sponser, I would have to accept responsibility for any medical bills, so not only would she be wiped out financially (not a problem) but so would we (which is).
7) Try not to let the whole thing impact too badly on the rest of the family.

This last point is valid whatever the situation. My daughter is at college, but my son is 17 and still at home, and is not what you could call reliable. I'm sorry to say he needs me at around on a regular basis to keep him from running off the rails (and this isn't speculation on my part - it has happened in the past). His father is pretty self-sufficient, but not particularly engaged with his children (sadly). So I will continue to try and keep all my balls in the air.

As you can see, it's something I've considered (agonized about).

Jennifer

 

[jenniferpa]

Wendy - it was your situation that I was thinking about when I said I wouldn't be surprised to be informed that she had broken her hip. However, she is apparently now walking with a walker, so I'm keeping my fingers crossed on that front. Assuming there is nothing broken, I'm still uncertain what they hope to achieve with physiotherapy. If it no longer hurts (much) but gives way intermittently, she's going to be a) at risk of falling and b) unwilling to walk on it (when she remembers), and I doubt pysio is going to help with that. If it's holding her up, she'll use it, and if it's not then she won't. It's not like she can remember techniques to deal with it.

Jennifer

 

[Skye]

Gosh, Jennifer, not surprised you're panicking. You must be going round in circles keeping all those balls in the air

Can't offer much help. It does sound as if the NH would be the best bet, and would take some of the worry off your shoulders, but only you know how your mum would react.

I'm thinking of you and your mum.

 

[jenniferpa]

Hi Hazel (and happy new year!)

I've just spoken to the staff-nurse at the hospital - finally someone who 1) understands me and 2) I understand and 3) is fully aware of what is going on.

It seems as if Mummy has an infection in her right leg. This is, of course, a good news/bad news scenario. Good that it's not broken, but infections in extremities are not a good thing. I'm am now running throught the DVT scenario myself. With atrial fibrillation (which tends to produce clots) this is also a possibility. Of course she's been retaining fluid in her legs for months, so it could be something to do with this. The good news, however, is she's using the call bell, at least at the moment, so she is getting assistance when she needs it. I worry that she won't eat - however, it's fair to say that the women in my family have sufficient reserves to see us through famine

I have so far resisted booking a flight - the last time I came over in this situation, it was actually more stressful to be there, but not be able to do anything, than not. Furthermore, when she sees me, she expects me to take her home. It's a question of timing: i want to get there close to the end of her stay, so I can put any arrangements in place.

Jennifer

 

[Skye]

Hi Jennifer

Sounds like panic over -- at least for the time being. Good for you!

I hope the infection doesn't prove to be DVT or anything else too serious. It's good that you now have someone you trust to keep you informed.

Let us know how it goes.

Love

 

[Cate]

Hi Jennifer

Having just come home from a New Year jolly, just been reading your posts, what a total nightmare you have been going through.

It beggers belief that you have been told there is no Pharmasist over the holidays, utter rubbish - picture the scene - person admitted with serious heart condition - Consultant writes up cocktail of drugs - Consultant told Pharmasist on holiday and no cover - I don't think so. I have worked in a large city teaching hospital, hick cottage hospital and private hospital, there is ALWAYS a Pharmasist on call........... did they manage to get some drugs to treat your mums leg infection seen as the Pharmasist was on holiday!!!!!!

Just a suggestion............. might it help if you faxed a letter to mums Consultant with all your questions about the diagnosis and prognosis...........suggesting that his secretary call you with an 'appointment' to speak to him direct to discuss all your issues raised.

It seems that you have enough cover for mum during the day, have you considered night sitters for her, you may, in the circumstances get financial help from Social Services for this. I know this service is available through the private sector, I would suggest you dont need a qualified nurse, a Health Care Assistant on hand to provide support through the night, or maybe just part of the night might be helpful. Any Nursing Agency would be able to provide you with details, I used to do this years ago when 'moonlighting' in those days the agency would request that you provide somewhere for the nurse to sleep within earshot of the patient, as this was a 'night sleep' service it kept the cost down for the patient.

Hope mum continues to improve.

Best wishes for the New Year.
Love
Cate xx

 

[jenniferpa]

I have assumed that the A & E have their own drug supplies - one has to hope, anyway. As it stands, they're still not certain whether it's an infection or not. She's on pain killers and her existing meds, but that's it at the moment. The nurse told me that the pharmacy was "supposed" to be open - not much comfort if she had stroked out due to her lack of BP meds (or as a side effect of abruptly stopping any of her other meds).

Yes, I have considered private duty nursing, or something less than that. Actually, I have tried in the past to see if I could get a private duty nurse in an NHS hospital - it would appear that that is not possible (even though they simply don't have the time to provide the kind of care I would wish her to have). I very much doubt I would get financial assistance from anyone for night sitting, but I'm more than willing to pay for it. Unfortunately, in a one bedroom apartment, there is nowhere for a carer to sleep. The downside of this living arrangement. However, although I have been somewhat sceptical of technology solutions, I have wondered whether a monitoring system might be possible - like a baby monitor only more effective. There is staff 24/7 in the nursing home.

I am currently feverishly trying to work out how much it would cost if I came for 2 weeks every month, with professional care for the other 2 weeks. I realise that sounds ridiculous, but it's currently costing more than £350 a week for carers/food/laundry etc, most of which I could stop if I was there. When you realise that flights average $500, it's not so far out of the realms of possibility. Probably pie in the sky, but it gives me something else to think about.

Jennifer

 

[Cate]

Hi Jennifer,

Yes your quite right, there are a certain number of 'basic' drugs kept on A & E, but they would still need to get the majority from the Pharmasist.

Again, your quite right, to 'employ' an Agency Nurse to care for your mum in a NHS hospital would be a no no, basically because of insurance etc. and whilst in their care the NHS is responsible for your mum.

However, an Agency Nurse to do nights sleep in your mums own place is different, that's up to you. When I said you need to be able to provide somewhere for them to sleep, whilst a bed is ideal, a chair is also fine, I've done it many a night, and most agencies would find this acceptable.

I dont think this would cose anything like airfares for you every month, and just think what this is going to do to you, constant state of jet lag, and the upset for your children you doing all that travelling, nice idea, but quite honestly I think this is asking way too much of yourself.

What ever you decide, good luck with it.

Love
Cate