Help and advice quick PLEASE!

[Chris]

PS - hope I'm not depressing everyone - sorry - didnt mean to do that - please note that Magics situation is not at all similar to ours was last November in the medical aspect - it was only the IV bit that was similar .

- Oh dear !!! this one way or rather - slowish 2 way communication is difficult at times.

Chris

 

[Mjaqmac]

Mum wasn't discharged.

She has now been moved to the Elderly Care Unit but has had the IV taken out. They lost her hearing aid the first week and it will take them 3 weeks to replace it because it has to be sent to Wales to be made! They have refused to give her a temp one in the meantime. She is sitting up there in a world of complete isolation. I even had her name on the hearing aid!

I cannot take her home until the lift has been installed as she will never be able to use stairs again and her oxygen situation is now to be increased in quantity and kept on all the time as she is so breathless now walking there's a possibility she could faint and fall. I also have to get longer lines and more oxygen taps put around the house. The lift work will be messy and take about a week and it may not start for 2-3 weeks!

This is a nightmare. The lift work has been stalled again (wait till you hear this one) the only man whom can pass the paperwork works 2 days a week until 1pm, so even though my MP is the one whom has pushed this lift for me, and the survey was done on Wed, I have to wait til Mon for the one man in the whole universe whom can pass this thing.

What the hell is going on in the SS? Could they not get a couple of monkeys in to run it or Jordan's chest, maybe then they could keep abreast of things!

Thanks for listening, feel a bit better now.

Really Miffed Magic.

 

[Kriss]

Dear Magic

why must we have to fight the system as well as the disease? Losing the hearing aid is unforgivable and merits a particular complaint and very bad publicity - if you have the energy.

That's the key isn't it - no bl***y energy left!

It's hard to find any positives in the situation but perhaps that she's well enough to at least move to a different unit where they may understand her needs more?

Take care
Kriss

 

[Mjaqmac]

You're right about understanding her needs more Kriss. Thanks for that, I hadn't thought of it like that and can explain it to dad in that way, as he is so utterly depressed he barely speaks now.

This is the 9th hearing aid to be lost in a hospital and then they have the cheek to tell me mum doesn't understand and is very confused. It makes me really angry. Mum could have a conversation when she had her hearing aid, now she looks at you and chatters in what sounds like a foreign language. I take it she's copying how things are sounding to her.

Some old bat visiting the hospital asked, "She speaks fluent Italian I take it"
with a glint in her eye. (Everyone's a comedian)

"Don't be silly" I replied, "It's Portugese!" Ho bl**y Ho!

 

[Chris]

Unnecessary suffering & Carers can influence SS

In 1994 I vowed that in the future (when more time & energy) I'd grab every opportunity to do what I could to stop the unnecessary suffering that my family experienced. It was my way of getting through those years .

The suffering all dementias cause is bad enough - until research comes to the rescue (and a lot is going on - there is hope - but only long term - too late for Mum and many on TP sadly) we can only hope to lessen it with good care & the drugs currently available - but the unnecessary suffering that we read about every day on TP is .......... its beyond words .....

What can those of us who are free from caring do now to help?

2 things spring to mind - advertise TP more widely amongst the professionals - especially in the area of training - so that very early on up and coming profs FEEL what it is like - then maybe we'll get better quality services adn more appropriate ones.

2nd - Flagging up the need for Carers Advocacy services - In North Somerset , Crossroads now have an Advocacy Service for Carers - but its one worker part time and as with all services its those with greatest need that are on top of the list.

Another thing that helps is (again only something former carers can do - usually) to get in on the Carer Representation scene in all Health & Social Service departments. It is a real eye opener to see how decisions are made and the more our voices sar heard themore we will gradually help them to be able to sit in the shoes of those they are providing services for.

Carers voices can make a differences - here , last week, carers, whose relatives are living in a wonderful small LA run dementia unit opposed the inclusion in local Council Tax budget 2005 - 06 of "Proposed closure of care home" - the cry was "Oh - we will have a consultation first - dont worry " !! WE did worry - how can that be in a Budget if it hasnt even been fully considered first. Carers lobbyed & spoke to media etc - common sense prevailed and there will be a Full Review of services for Older Adults with mental health care needs now - starting in March. WE can make a differnence.

I'm sorry this is of no help to those in the thick of it - but as time goes on we do sadly become former carers - we must make the most of every day of course but earliet I found it helped day dreaning about things to be odne in the future and at this stage I do find it helps to put experiences to use - it somehow redresses the balance & takes away the bitter feelings a little.

Sorry to ramble !!!!! again !!! Bst Wishes

Chris

 

[Norman]

Dear all,
further to Chris's posting,I don't believe only former carers can assist our cause
Heart of Birmingham D.I.S.C (Demintia information support for carers) is a new care service of Crossroads and was established in June 2003.
It recognised the the distinct needs of carers and proposed to sustain the carer by providng continuing support,timely advice and information,access to to other relevant services as well as efforts to raise the awareness of dementia and the role of being a carer.
I have been invited to sit on the DISC steering group,as a carer,which meets on a regular basis,I have agreed,another voice for AD,and TP.
Regards
Norman

 

[Mjaqmac]

Good for you Stormin', sing long and loud for us all. We're in safe hands with you representing us.

Can I just say that the only organisation (apart from Alz Society whom has been brill with advice even on the phone line and online enquiries) that has been of any worth to me as a carer has been Age Concern, Northern Ireland. They have been very supportive and helpful, the staff are great. But I really feel let down the most by SS, especially the "Care" manager and the CPN.

 

[Chris]

Hi Norman

I was trying hard not to create an impression that I thought current carers may have time or energy to attend meetings etc Of course some will, some wont and not everyone will feel like doing this - I really didnt want to create any pressure on any carers reading this .

Everyones situation is different and it also changes as both the person with demneita and their carers - we're all in a constant state of change !!!

I thought readers might come crashng down on me & say I didnt understand that they dont always have tiem to do the basics let alone any extra things - sorry if I gave the impression that former carers have anything different to offer than current carers - that wastn what I meant.

If current carers can take part in local service development that is even better - their views are icerdibly powerful. Retrospective accounts (of anything ) are always less accurate - like hearing differnet witnesses views of an accident or something.

Communication is not my strong point !!!! I'll try harder !!!

Your post is interesting - DISC seem to be doing what Alzheimer's Society branches usually do ?????? is there a branch in that area ??

Our local Crossroads has recently formed CIN - Carers Invovlemetn Network - where carers, mostly current carers, meet once every 2 months - most are also invovled in some kind of Carer Representation activity - we exchange experiences & therefore learn about ohter areas of Health & both statutory & voluntary sector organisations. We also work on a combined project - hav ejsut produced a publication (in conjuction with hospital staff) - for carers when the person they care fo rgoes into hospital - so they know what ot expect from hosp staff & who to speak to & how to make sure the patient's neeeds are fully understood - and what to do if eg hearing aids go missing (in my experience they colud well have gone to the laundry - seems a lot of things get bundled up wiht the bed cothes & end up in laudry !!!).

 

[Norman]

Chris
there is an AS branch in BIRMINGHAM.I am a member.
DISC steering group is made up of AS,crossroads care, west/central/south Birmngham crossroads , a CPN.,user involvement & carers unit and 2 disc staff.
Meetings are arranged with bodies like SS.
Most of the guidance I have received has been from DISC.
will keep you posted
NORMAN

 

[Chris]

Hi Norman

I love this idea of all orgs coming together - its great to hear it is happening somewhere.

So... how does DISC operate please? there are the meetings , but how did you access help from them ? does DISC have an office & staff or did you mean you had help from some of the member orgs like AS or Crossroads ?

Do you know how DISC is funded ?

Sorry for inquisition - !!! AS is undergoing a major reorganisation in its management and delivery of services - the whole process is called One Society - I have a bee in my bonnet about the fact I think the future lies more in one society (as in society as a whole ) but then Im a bit of an unrealistic idealist perhpas.

but .... DISC sounds very holistic and may prevent another of my big gripes - duplication, reinventing the wheel & waste of resources due to too many small organisations doing much the same thing. It seems to me there has to be an element of empire building amongst orgs when there are too many of them , - whether charities or not - as we are all chasing funds from the same pot of money - and there is not enough to go round.

Enough for now !! Look forward to hearing how DISC develops.

Take care.

Chris