I can't do this............

[jenniferpa]

I assumed Hazel that what you're asking is whether you should tell the nurses on the ward where John is NOW that you will be doing this course. I mean, I assume that YOU'RE assuming that by the time the course comes around, John will already have left the hospital. If he's still in hospital the question will be moot: if the nurses turn up for the course they're going to recognise you anyway.

I think I might be inclined to drop it into conversation should the opening arise during the course of the care, but I wouldn't make a specific effort to do so.

 

[Grannie G]

Dear Hazel,

I would mention it to the staff. Otherwise they will probably be shocked to see you sitting there and would be justified in wondering why you hadn`t mentioned it before.

And as you`ve no complaints so far, you will undoubtedly have practices to praise, which will buffer any practices you would want to criticise.

By the way, what does DV stand for?

Love xx

 

[Kate P]

Hazel,

I would definitely mention it - it can do no harm and can only do good.

If it means that John gets even 5% more attention because they have a "connection" to him now it's worth it - especially as you've already said you have no complaints.

Personally, if I can find anyway to get better/faster/more effective help for my mum (or daughter) I do it!

Kate P
XXX

 

[Skye]

Yes, you're right, Jennifer, I did mean whether or not to mention it on the ward now. I'll obviously have to refer to my experiences when I talk to them, and it's useful that I've had that experience, though I'd much rather not!

OK, I'll try to bring the subject up, without making a big deal of it.

Sylvia, DV -- Deo Volente -- God willing!

 

[Cliff]

Dear Hazel,

Reading your posts you clearly have enormous good sense and a collosal sense of responsiblity. You know the situation and your sense of the right thing to do will guide you.

Wishing you and John every thing good.

With love

 

[alfjess]

After the infection has cleared, it can take some time for these impulses to die down, and sometimes they don't die down completely.

I'm no expert, but that's the way she explained it, and that's why it's a case of 'wait and see'.

love

Hi Hazel
Thanks for the explanation.

Hope John is a bit improved to-day and you are feeling better also

Love
Alfjess

 

[Skye]

I've just returned from giving John lunch. He doesn't seem to be improving at all, though the infection is more in control. They've taken him off intravenous antibiotics, he's now taking them orally, and he's off the drip.

But the agitation is still there, and his mobility is nil. They asked me today if he had a zimmer! I told them he walked a mile every morning without problem up to a fortnight ago.

The plan now is to transfer him on Tuesday to the NH he's booked into for respite. I was so flummoxed I didn't think to ask about assessment, so I'm going to have to battle that one now. I'm concerned that he won't get adequate physio in the NH, if he's not mobile by then.

Oh heck!!!!!!!!!

 

[jenniferpa]

Oh heck indeed Hazel. Although I think I might want to put it more strongly. I think you're right that formal physio will be nil in the nursing home, although I have to say, I didn't see much of it in the hospitals. You would think that there would be something they would do that was "special" but I far as I could see it was 1) encourage to them to get on their feet, and b) appropriate use of walking aids (fairly pointless that latter one when you're dealing with short term memory loss). Actual ambulation consisted of, maybe, once a day (and that seemed to be the norm). In the nursing home, however, they were better about actually getting mummy on her feet (when she was still at that stage), and MUCH better about one on one monitoring. Your hospital may be different but where she was, there were insufficient staff to encourage ambulation except when the PT was actually there.

Love

 

[connie]

Hazel, nothing constructive I can say. Thinking of you though.

 

[Grannie G]

Dear Hazel,

I don`t know what to say. Did the hospital consult you about moving John to the respite NH or was it all decided by the time you got there?

He should be able to attend out patient physio from the home, shouldn`t he?

And that no one knew he was walking a mile every day, up to two weeks ago, well where are their records?

What will you do now?

Love xx

 

[carol]

Makes you wonder about hospital records. We were away on holiday last year when mil was taken to hospital with a nasty uti, we arrived home after a couple of days and spoke with the consultant who asked if mil could deal with her own personal care, I was really cross and told him she had been doubly incontinent for about 2 years, (hadn't they found out!!) she had been in their care for 2 days. He also said she's allergic to penicillin, we said no, he trundled off and back came a nurse to say they had got her muddled with another patient!! Hey Ho..

Carolx

 

[Skye]

I've just spoken to SW (been waiting all afternoon, he had a crisis!).

He's not happy either. John's booked in for respite, not convalescence, and he doesn't know if NH will take him. He's going to ring home and ward, and get back to me. Unfortunately, he's off tomorrow, so if he doesn't get to speak to someone today, it'll be Monday, and a weekend's worry.

Told him John's still on antibiotics, agitated and immobile, and I was concerned about physio.

PS He's just rung back, he's spoken to ward, they're now saying that it's only a possibility, provided John's well enough. Not the way they expressed it this morning!

He's made it clear to them that the bed is booked as respite, and can't be used for convalescence.

Thank goodness for a good SW!

 

[Grannie G]

Very good news. Thank goodness some news is good.

 

[Mameeskye]

Hi Hazel

So sorry to hear that the normal hospital communication difficulties are surfacing. Keep your chin up and keep fighting.

With regard to mobilisation my experience with my Mum was like Jennifer's. The NH were vastly superior to the hospital and physios at both general care and getting Mum mobilising again. She left hospital with a zimmer unable to walk without support. UP until she fell last week she has been walking around the home without a zimmer for nearly 4 years.

The EMI unit staff feel that frequently it is better to teach dementia patients to walk again without a zimmer if they have never used one. They tell me that a zimmer is a difficult piece of aparatus to use and if you have not had one pre dementia it can be difficult to learn to use and co-ordinate. Mum has twice in the home spent 4+ weeks in bed and both times they have had her walking again with two staff for support at first, then one as she needs less support, then hand holding then she generally takes off by herself again.

Hopefully they will find a good convalescent bed for John.

(((hugs)))

Mameeskye

 

[Skye]

I think the problem now is that by discharging John to a respite bed, NHS pass the cost to SS (and me), whereas convalescence is NHS responsibility.

I don't care who pays, I just want John walking again!

 

[jenniferpa]

I think you're probably correct about that Hazel. Thank goodness your SW has his head screwed on straight.

Love

 

[cynron]

walking again

After my husband recovered from a swollen leg (long story) He never did walk again the phsio in his nursing home tried but she gave up and said he was not weight bearing. and so he never walked again remained immobile transferred by hoist and developed pressure sores.

Cynthia

 

[Cliff]

Dear Hazel,

Feel so angry about the treatment you are receiving when John's care should be paramount.

But lots of love to you and John and, as we know what exhaustion is, pray you find the strength to go on.

 

[blue sea]

Just a thought, Hazel, might not be relevant to John's case. Dad went suddenly from walking constantly to being totally immobile ( and very agitated) as a result of a particular combination of medication that he was put on over a period of a few days to control a mixture of problems - in his case agitation, aggression, swelling of his legs (caused by medication for high blood pressure), infections of the legs resulting from the former - you get the picture. Once the consultant took him off all medication and started again with a slow, controlled build up, the mobility fully returned. I would suggest asking for a referral to a multi disciplinary review of John's medication and current situation- involving both hospital doctors and a consultant psychiatric consultant. Often with dementia patients what starts out as a loss of functionality because of a temporary situation ( eg medication change, being made to use pads in poorly staffed nursing home), becomes a permanent loss. I do appreciate that sometimes it is the progression of the dementia that is the reason, but I think it is worth ruling out other causes first.
Hope this post is of help and is not adding to your stress by offering another possibility.
Blue sea

 

[Skye]

Thanks, blue sea. John's medication is under review, and they're trying to get our own consultant in for a meeting. Hopefully that will happen before too long.

I had a good natter to the ward sister today. She's on the Dementia Champions course, so that gave me an opening.

She's spoken to the SW and to the NH, and assured me that John will not be transferred until he's ready.

I asked about mobility, he's being put in a chair for a while each day, but hasn't yet taken his weight. I told her that I would like to have him home, but that would depend on his being fully mobile, because of his size. She understands, so I think they'll put in the effort now.

It's not what you know............!