Care in the community is hard to find

Breeze Watson

Registered User
Oct 13, 2005
1
W.Midlands
is my first posting, it is a moan...sorry! and indeed I am sure others have written thus - what care in the community?

My husband was finally diagnosed with vascular dementia following a knee replacement operation which left him immediately disorientated and this disorientation recurred for two years - which would seem to be postoperative cognitive dysfunction. I am currently in communication with the hospital to get his report. He worsened with hallucinations, wandering at nighttime - finally the doctor, without visiting him, prescribed medication and yes, an assessment! A psychiatric nurse managed in fifteen minutes to pronounce the verdict.
Throughout the summer John worsened and on one occasion he was ill and unconscious and I could not waken him. An ambulance and paramedic came and took him to our local hospital. He had a cursory examination I asked if they would take him in the 23 hr unit and assess - no. He was returned home with one diazepan tablet. A different hospital to the knee - I am again in complaint correspondence.
The only help I received from any organization was a mass of leaflets telling me what I already knew and much of the nursing home information out-dated. Respite care...you have to be joking! I am, like many others, self-funding...you may think this makes it easier - I have visited nursing homes I would not put a dog into - inspection - I find it hard to believe. A Social Worker called but quite honestly she was very nice, sympathetic, but of no help. After weeks of sheer hell with days spent phoning for help - I am still waiting for a reply to a request for respite care, a request for a place in a day club, a request for a private assessment. I registered with all suitable nursing homes - I was eight on one list fifteen on another and it was just waiting for death. During this time John was in need of more care than I could give and in final desperation my eldest son remained at home and my other son and I went out on a mission to find a suitable nursing home for immediate respite care...impossible, I thought so. The first home had a room, it was so awful...a thought of John at home for another dreadful night or in the room on offer...I suddenly remembered another home I had located on a website in desperation we went and it was ideal...a respite bed was offered, I had given up worrying about the cost.
John is now 20 miles away the respite care became permanent care in a comfortable well run 40 bed private nursing home and I am content he is well cared for. He now knows his nurse better than he knows me!
A few weeks ago John became ill and the matron and I agreed he needed hospitalization...dementia in a general ward - he could have starved to death - a full meal was placed before him and removed. I was in daily feeding him...he developed pressure sores - I had him returned to the nursing home.
My Points are: The total lack of respire care beds in this area
Poor medical knowledge of dementia/AD
Poor training in hospitals for the care of AD patients - no continuity of staff to keep you informed of patients progress.
Many organizations all with the same paper information but no real help.
Self-funders are entitled to nursing care funding on an assessment basis - this takes months to get a social worker round.

I think for my first posting I've bent you ears enough.
Breeeze
 

rummy

Registered User
Jul 15, 2005
700
Oklahoma,USA
HI Breeze,

What a nightmare you have been through. I can't believe how hard it is to find a good place to put our AD folks. After reading your post I'm inclinded to start visiting homes because it is ahead whether I want to think so or not. So thanks for the nudge. Take care and I hope things improve for you.

Debbie
 

EllieS

Registered User
Aug 23, 2005
170
SOMERSET
It's a disgrace that you've had so little help.

What about your GP - he should have put you in touch with an appropriate Social Worker who in turn put you in touch with a CPN and had regular visits. They should then have helped you to get appropriate Carers in to help with whatever you needed help with.

I know you have to really SHOUT for these things but everyone with these problems should stop thinking about it and just SHOUT! It's their jobs - make them do it!

I wish to God I'd shouted louder to my Mum & Dad's GP - he may not have died with bed sores and of starvation and dehydration, and I might have picked up on Mum's problems as well.

Just SHOUT SHOUT SHOUT!!!

Is it just the English that hesitate to demand these things?

Ellie
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
One of the reasons that I am happy to be a host on this site is because of my own experiences,and to be able to hopefully save some people a lot of grief and agro.
When we first needed help it wasn't there,some help was there,but no one told you how to find it.
It is a fact that the ones who shout loudest often get more.
This only makes me wonder how many meek little folks there are out there getting nothing or very little because they don't know the system and have no one to guide them.
I shout very loudly but I am still fighting for our re assessment to be aproved,so shouting does not always work.
I hope that this site has saved many people some worry and will continue to do so.
Norman :mad:
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
I have SHOUTED from day one, but everyone seems hard of hearing........It is good to get it off ones chest here on TP. We may not have all the answers, but we are, at least, united in the common cause. Take care, Connie
 

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