What can I do?

[Sheila]

Update, well, had the meeting, it was written up as a discharge meeting, so mum's needs for discharge were discussed. 8 people present. I requested hip protectors, head rest for wheelchair, hospital bed, aids etc.
Both our district nurse and mum's social worker backed me in wanting her home. They think she will improve in her own surroundings. I said I hoped this would be the case but even if it was a case of taking her home to die, I felt this is what she would want and all agreed.
I handed round copies of a basic report on what mum has gone through since March 12th, the PALs rep. said she is going to act on it, she said I had grounds for a complaint if I wished. I said I would prefer to see if she could get some answers and improvements for all if she could, so this is what is happening. She said that if I am not satisfied with the answers she gets, she will help me sort out a complaint procedure, so there you go!
Oh, and I mentioned mum has lost a great deal of weight, so she has now been written up for supplements, also liquid paracetamol, although I still have to request it each time as it is always given as pills first.
She is often sleepy which makes it hard to get her to eat/drink, partly I think because she is given haloperidol in the night if she is noisy.
Now I am just waiting for things to happen really. She is very frail, I could still lose her before I can get her home, but at least I know I've tried.
She.XXX

 

[Brucie]

I'd say you have a result!

Well done for hanging on to get it. It shows that one needs to be tenacious, and that this can work.

I suggest you hold the complaint procedure as a Sword of Damocles to ensure they do the right thing now.

Please let us know how things develop!

Regards

 

[Sheila]

Hi Brucie, thanks for your kind words. The PALS lady rang today, apparently she has had a meeting with some top bods at hos 2 and they appeared to agree that I have highlighted some issues they should solve. I will be getting a copy of this in writing so will forward copies to Alz. office together with my list of issues.
I am to see the hospital doctor in charge of mum, (although this is the one she saw when she first went in with the chest infection, not the hip consultant??) tomorrow, I have requested the PALS lady accompany me as that way nothing can change so to speak. Must admit, I am not looking forward to it, I feel as if I am in the wrong somehow, even though I know I am not, it is like being summoned to see the head at school!
I have no idea of what will happen, although I am concerned that mum's most recent skin tear is deep, now inflamed and obviously causing her a lot of pain. (This is besides the necrotic heel on her other foot and the other earlier skin tear above it.) I intend to ask why she is not on antibiotics as we discussed it on the ward yesterday evening and there was a ward round this morning. She was in too much pain to eat or drink tonight, very restless and hot although they have now given her a fan. She had her paracetamol liquid, but I had to go and ask whether she was still written up for codeine phosphate (this was done when her heel got really bad) she was and some were dispensed which did ease her a bit.
I have spoken to all who will be involved with her home care, a meeting is due to be set up this week here at home for assessment of her needs. Although, if she gets much more poorly, I dout she will make it, oh I am so fed up!!
She. XXX

 

[Sheila]

Yet another update, well, had meeting with Dr in charge of mum, apparently she is in charge even though mum has since broken her hip. Explained my concerns, gave her a copy of some of my diary entries which had particularly alarmed me. (I will send these in to the Alz Office as soon as I get a minute) Although the meeting was fruitful, I was told that mum was in late stage dementia, (however, she (mum)held several telephone conversations with family members between then and now and she was fairly coherant as long as you knew her well as we all do.) I said I was concerned about her heel, it is now a deep necrotic hole which one of the nurses has told me will need to be packed once it has debrided enough. I feel this is more what is likely to be a killer than the dementia somehow??
Anyway, I said I wanted her home regardless, (there is loads more but I can't go into it all here it would bore you to tears!)
So, if she can make it till Wednesday that is whats happening and I will either care for her till she dies, which I am told will be shortly, or she will recover, it is in the lap of the gods now, send me strength please, I an gonna need lots of it whatever!!
Oh, and apparently several meetings have been held because of the issues I raised, I now have a report back from the PALS lady confirming this which I will send in with all the other stuff. And, the discharge nurse is querrying why mum is not being assessed as qualifying for full NHS funding for nursing care, (I have already sent in an appeal) I really hope, that even if my precious little mum doesn't make it, when she gets up there she will be able to say I did it my way to help others with my disease!!
She. XXX

 

[Kriss]

Hello Sheila

God bless you both and there are lots of us here thinking of you.

Good Luck!

Kriss

 

[Sheila]

Thanks Kriss, update, SHE'S HOME!!! looked like a little corpse on the stretcher, arrived around 3pm yesterday (Wed). I have pushed fluids, 1900 mls since then till now (16.40 Thurs) She is very frail, but the fluids are plumping her up a bit so she is feeling slightly more comfortable. She knows she is home and she is quite with it at times, she seems much more relaxed than in hospital and is noticing her surroundings and who is here etc.

Heard today that we are likely to receive all funded nursing care, but until I see it in writing and bills being paid, etc.....!!

Mums heel is a necrotic area of just over 4x4cms, the district nurse measured it this morning and has recorded it in her notes. This is solely due to her long bed rest which should not have happened, let alone the broken hip. She also is unable to straighten her legs through lack of exercise and the muscles are tight and extremely painful to her.Still, she's home, thats the main thing right now.
She XXX

 

[Brucie]

Great news - I'm so pleased for you!

It is not going to be easy, of course, but as you have already stuck to this like a limpet, I'm sure things will work.

Do please keep us informed!

Best Regards

 

[Chris]

Well Done!

Well done - I remember when Mum got back to her care home from stay in hospital - at 10 pm at night on winter evening (hospital transport - another nightmare !) - she sat in armchair & just sank deep into chair - "Ohhhhhhhhhooooooo " she said as if in heaven - I think it was the complete silence of the house (everyone in bed of course !) that she loved as much as comfy chair.

With very best wishes to you both .

 

[Sheila]

10 days on, update. Thanks everyone. Well, she is plumping up slowly and eating pureed foods, asking for seconds of cornish ice cream and singing at times. Thats the up side! The down side, her heel is still really nasty, they still can't get the pain control right, liquid paracetamol basically, I ask you! I got her co -dydramol from the emergency GP last weekend, but unfortunately it makes her more confused and then she can't understand even a little as to why she hurts so and she gets in a state and her temperature goes up, shes flushed, hyper ventilating etc so its not much use using it really. The paracetamol cools her down when the pain bites, but does not begin to control it.. She is also on Baclafen for her muscle cramps due to their wastage basicaly and Halerperidol PRN for at night but this makes her really paranoid and she halucinates so its all working really well!! The D.N. has apparently had a word with the local dementia ward who say there is no way to tell if she is in real pain or just rambling. I think this is a bit much, how would you feel with a 4x4 cms necrotic hole in your heel with or without dementia? I am doing lots of lavender therapy, massage etc. and I use Bach rescue remedy which seems to help at times. We are constantly repositioning her because the slighest pressure on her heel sends her through the roof, or is she just rambling?.......
All this pain because no one had the time to watch her enough.
Still, we've just settled her for the night, she's O K at this moment.
Oh, and we got funded nursing care, all paid for the next six weeks, it will then be re assessed, the agency girls are wonderful and care for her so gently. We are also getting respite twice a week from Crossroads for 4 hours so it is coming together slowly, if I could just get her pain controlled.
Love to you all, She. XX

 

[Brucie]

...may seem like it is one small step for Sheila, but it is really one giant leap for Mum [and Sheila].

Remember that. Well done.

 

[Sheila]

update

Update two weeks on, medication finally sorted. Apology via PALS that SHO had omitted PRN meds and this was why there was breakthrough pain. Quote (via PALS) from Ward Consultant, "apologies, wouldn't it have been better if I had just done it myself?"
I now have medications as given in hospital, plus back up of patches and oromorph if needed which I can now just ring the doctor on call and be advised on giving instead of my poor long suffering husband having to tear round the country side getting! What a shower, and all because hospital not on the ball. It is exasperating.
Mum is comfortable and now it is up to the one above to say when, as of course it should be. This is all both mum and I have ever asked. She is poorly, but not dehydrating away in a room all on her own, calling out and frightened. She knows she is loved and she is much calmer now.
She. XX

 

[Sheila]

Update, had to start patches today as mum has started getting breakthrough pain.
She is really quite with it, recognises us all, speaks clearly a lot of the time and in herself is not too bad. Her heel though is causing her much pain. The necrotic area is starting to come away. There is a huge area of raw flesh that has to heal once this happens and I really dont know if she has the strength, but she is so determined it seems to fight it, so I am too. Please say a prayer for her and send her strength as I am sure it is the heel not the dementia that is actually pulling her down.
We continue to give all TLC, the homecare team she has caring for her are coming in twice a day, and some night sits. They are all wonderful and very supportive, the DNs come in every day too and are really kind to her and supportive to us as a family. She is surrounded by love now, so we just take a day at a time and hope and wait.
She.XX

 

[Sheila]

Just to tell you all, mum passed very peacefully away at home as she wanted on Friday night. Vera Lynne was singing "A nightingale sang in Berkely Square", we had oils burning and so it smelt of lavender and flowers.
She looked towards the window, gave a little sigh and I am sure my dad came for her. We were all with her and there was no pain or fear. I am sure they are now booked in to a double room up there!
Thank you everyone for helping us through all this, It has been a great comfort to see how many of you cared.
With love, She. XX

 

[emscub]

Just wanted to say that I'm thinking of you, as I'm sure we all are.

Love Emma

 

[Brucie]

A difficult time for you, but you conjure up a wonderful picture and I'm so pleased that it was so peaceful.

Thanks so for letting us know.