When the NHS can't help

Thank you Grannyknot. My first husband was very violent and I never wanted my parents to know so I learned to 'put on a front'. When my second husband got ill I found that being pushy in a very nice way seemed to work well for me so now I think most of the people I have to deal with for both my husband and my Auntie now know me well and we are on first name terms.

x

Minder you sound so stoical. I take my hat off to you. .

Minder

Thank you Orca. You're absolutely right, you do 'lose' them don't you.

He doesn't know me now but my Auntie does - to a point - but she's getting worse so it's all quite depressing.

Minder sorry to hear you have 'lost' your husband to dementia. It must have been very hard having to cope with him at home and you certainly don't need all this upset and upheaval now.

Sorry, seess should be assess

My husband has early onset dementia, he was 50 when he had to stop working and was finally diagnosed at 52. He is now 62 and doesn't have a clue who I am. He sits happily (I hope) in his chair in the lounge at the home and he was receiving continuing health care for the last 6 years and then suddenly this was stopped in July last year. He didn't meet the criteria. I have appealed against that decision because I don't agree with it. More money to pay out of course .

Now they have decided to close the young dementia unit at his home and 14 residents have to be moved. Unfortunately there aren't any beds in the county. At the meeting we went to a couple of weeks ago there were 2 vacancies in homes here but of course that can change daily. A social worker was supposed to go and seess him on Thursday. I haven't heard yet what the outcome of that was.

The home is close to my home and the carers are wonderful people but something we don't know about has been going on with management, managers and deputy managers have come and gone a lot in the past few months.

My Auntie went into a nursing home yesterday and she is self funding -£750 pw) for a while anyway until her savings are down to £23,250.

I cared for my husband for 6 years before he had to go into hospital and then a home. So many people these days seem to develop this awful disease.

I have never had to deal with dementia myself directly but I know several people who have.
That said I have looked after people's relatives who have dementia for a few hours.
In 1 case the carer had to go in to hospital for 2 nights and it was on her private health insurance.
The operation was not urgent but it had to be done asap.
Social Services were not interested.
All they said was as she was going in to a private hospital she was responsible for arranging and paying for his 2 days care.
She even approached nursing homes who said they would take him in only if they were not full at the time which was no use as the operation was booked for a certain day.
Myself and my father helped. We discussed the situation with the daughter and it was decided it was best we stayed at her house to keep her father in familiar surroundings.
Things went ok for the first night and we even took the father to the hospital to see the daughter.
We don't know if the fact the daughter was not there was any contribution to the situation but on the second night the father was continually going in to my fathers room saying things like there was a fire or someone was stealing his money or my father had to call the funeral director.
Oddly enough my father was older than the person we were looking after at the time.
Sadly we had no alternative but to call the ambulance and the father was in a hospital ward for about 3 months and then transferred to a care home.
It was clear the father needed supervision really beyond what myself and my father were capable of giving. We were not trained carers.
Also what did concern me was Social Services seemed only able to help if the daughters need to go in to hospital was urgent. If she had not had the treatment at that point her need would have become urgent and she would have been in hospital even longer.
Another problem also happened.
When the father was taken in to the hospital by ambulance there were no beds available.
I had to leave my father ( he was about 87 at the time ) to look after the patient in A & E and I had to go and collect the daughter.
A bed was found about 4 hours later.
I must say the private hospital was marvellous when we visited.
They bought us 2 lots of tea and we had soup, sandwages and a sweet free of charge.
They said it was free as the food would have been thrown away had we not eat it.

Frank

Frank

Would it not be realistic to think that, until what ever government there is running the country; gives a clear directive and then allows which ever department that is made responsible to do the job, unhindered, with a sensible budget. Dementia care will continue to lurch from one crisis to another.
Care of the elderly must not be ignored it is one of the largest growing sectors, we are all living longer, fact.
There appears to be many people who enjoy/love helping the elderly, they should be encouraged while there are many who abuse and exploit the current system, to make money.
I do not think we as a nation should allow the 'cop out' to continue.
Care is the responsibility of everyone, the state contracting to private companies should not be allowed, please let us get something right.

My lovely father in law rip died just over 4 years ago we struggled when he developed dementia paid for carers who were mainly dreadful we lived over 40 miles away and oh was working full time then. Was so hard we had topay neighbour to shop etc evening carer who. Was paying for hour came and left in 5 minutes not realising we had popped out to shop so challenged her if he was alone then they took advantage.

So sad. Eventually after one of the endless meetings we we told to arrange residential care he was doubly incontinent by then but he hated going into care it broke our hearts we had no choice the social worker said if we took him home they would not help in any way.

Does not sound like things improved.

glamma I am sorry abt your neighbour, I live in London and I may be wrong but think it could be easier here to get help.... A bit off the subject, Paul O'Grady (TV comedian, I think his great) originally from your part of the world was a carer!! Hope your neighbour gets help soon, sometimes the louder you complain the more you get so maybe its time for her family to start shouting.

Some carers go above and beyond. My husband's aunt had dementia and they had a team of carers going in each day. Two of them, a mother and daughter, used to sit for a whole day occasionally to give him some time off and refused to take any money for doing so. Even after she died they would occasionally visit him, taking a home-baked cake.

My neighbour who is in her eighties is very well off, according to her solicitor, has free care twice a day, visits her husband three times a week has her weekly shop done all free. She resented very strongly originally having to pay for her husbands care but now he needs nursing care so she doesn't pay. All very well but if I had to have the really unpleasant besoms who look after her looking after me one day I hope I could kill myself. Some may be ok but I've yet to meet them.

We live near to a lady who has social and dementia problems and the trouble the family have had in arranging daily help for her has been very very hard indeed and still not sorted,she goes out at night in her night dress and we as neighbours keep a look out for her but as her Doctor has said she is not a danger to herself no one will intervene,she has homehelp 3 times a day but won't let them in or expects them to go into our communial garden and climb through her window,this is not the actions of a stable person imo but she is left to her own devices as the care system is saying she is not mentally ill.Its so sad to see her not looked after,her family are beside themselves but she will not allow them in her home.This lady is the same age as I am so this illness can happen at any time of our life.

Well NHS can help sick people to become well but they can not perform miracles. There is un fortunatley no cure for this evil disease.

So then it would be left to SW's to help families decide what support there is out there for them.

I believe a care manager is asigned to a patient diagnosed with dementia, homecare is also available, and so there is lots of help out there just not specificatly from NHS.

Galen there used be a fairly good day care and respite care system where I live but it has been gradually dismantled over the last (well perhaps) 6 to 7 yrs.
I have been retired for two years now, time flies! It may be longer!

That is for all persons whether Dementia sufferers, The plain lonely, or those with Learning Disabilities.

What support?

The support from social services has deteriorated over the last 4yrs because of lack of funding for day care, longer term respite care and transport for day care. In many areas it is non existent if you don't have private money you just can't access it. The situation is far worse than it was six or seven years ago.