Independent living?!

Don't forget that people are working until their late 60's these days, and often helping out with childcare for grandchildren too.

A recent news item in our area was about a lady who was virtually bed bound and had died because of confusion about carer's holidays and arranging cover. She had nobody to help her for a week and not surprisingly was found dead. Her family were highly vocal on TV with criticism about the shortcomings of the system but it was obvious not one of them had picked up the phone to see how she was or called in. What a terrible ending - very frightening to think about.

I'm hoping the proposal (if that's what it is) for a voluntary euthanasia facility in Guernsey is implemented.

I do wish people were more realistic about ageing! You cannot hold back the inevitable, but people are very poor at judging their needs in the future. They seem to think that they will be the exception that proves the rule. Not so! A good care home (and yes, they do exist!) is far preferable to a lonely and degraded existence waiting for local authority carers to do 'hit and run' caring. And yes, most people have to pay for that service, however bad it is. Unfortunately, most people leave decisions about where they will end their days until far too late, after a fall, a stroke, dementia, and their choices are very very limited. Start thinking about it now and get your children involved so they can act for you (Lasting Powers of Attorney for Property and Affairs, Health and Welfare).

Good advice, Nemo's Mum

Unfortunately unless you are able to pay to go into a nursing home or they deem you ill enough to put you in, which could be the other end of the country, you have no choice. We see it all too often where we live. It is very sad. It concerns me for our future but I try to put it at the back of my mind.

I agree Nemos Mum in general but I’m afraid sometimes, as described in this thread, some relations then block spending any money on their vulnerable older relation/s. Financial abuse of older people has been rife for many years by relatives, carers, and others and I suspect may be getting worse.

I also agree that many paid carers have a rough time with their employers but there are some carers, and always have been, who are unkind and thoughtless.

Am hoping to go the way of my wonderful grandma who died while gardening of a heart attack aged 85. She revived for long for a neighbour to call for an ambulance and she was able to speak to my mother before she died. Sad for us as a family, but a quiet and dignified way to die. ?

MissAdventure you have highlighted the main problem. For reasons of budgetary constraint local authorities introduced third parties to handle the caring that used to be done by home helps. I can remember home helps and they used to be paid a reasonable rate by the local councils. They were allowed enough time to build a relationship with their clients thus finding job satisfaction.

The daughter of a friend of mine works for one of these care agencies doing their accounts and they make huge sums of money. The carers are expected to use their own cars and get a very limited time allowed per visit. When carers realise they are being exploited any job satisfaction disappears and they become increasingly less reliable.

The way funding for care homes has been changed means that families of the elderly are reluctant to see their inheritance, i.e. their parent’s house and savings, disappear and indeed the parents desperately wants to leave an inheritance for their children and will often unrealistically want to stay at home.

Very sad. Having had both my parents in care - Mum for the last 4 years of her life and Dad for the last couple of months of his I don't want to end up like that. The care package we had in place for Dad after Mum went in was ok but we were only round the corner so did most of the caring ourselves. They did get him washed and dressed on a morning and would give him his tea on the odd occasion I wasn't here, I'd arranged for hot lunches to be delivered by a private company which were excellent, but most of the time we would put him to bed and I had him here every afternoon until bedtime. As time went on and his care became more personal it was me who did it, ensuring he cleaned his teeth, toileting him, bathing him etc - he was a big man and as his dementia worsened he wouldn't let the carers do it. They'd had the personal alarm system installed before Mum was taken into care but neither knew how to use it - in fact Dad used to shout at them on the intercom if Mum had accidentally pressed the pendant telling them to bugger off .

The council did put a second charge on their house for Mum's care costs which due to her decreased mobility and worsening dementia after Dad died started to reduce as she became fully funded but we did have an outstanding charge taken once the house was sold.

The home they were in was very good and the staff were lovely but low paid and doing a very difficult job - both physically and mentally demanding. I remember one very nice old lady who was in there due to her frailty not dementia telling me the first time she had to have a male member of staff take her to the toilet was extremely disturbing and degrading. I'd rather take myself off to Switzerland than face that but of course by then it's too late.

They are building a huge assisted living block of flats round the corner from us - maybe we need to look at buying one of those for future use

In Denmark we have home helps trained and paid by the local councils, but cuts in budgets, decided by parliament not by the local councils has resulted in much the kind of situation you are describing in the UK.

So having municipal home helps won't solve the problem. Most of ours are run off their feet and feel they are not providing optimal care either.

I have no idea what the solution is, obviously more funds, but where are they to come from?

One thing we can all do is make a Living Will. I have one to state that if I ever develop dementia, or any other condition where I am unable both to care for myself and speak for myself, I do NOT want any medical interventions to keep me going when Nature might be trying to let me go. Palliative care only, please.

IMO too many people with a very poor quality of life are kept alive just because it is now possible to do so, when it might be kinder to let them go.

Another thing it says is that I never want my daughters to feel they must look after me. If I need care, find me a nice care home - never mind what I might say once the dreaded dementia has taken a hold.

We've had both my FiL and my mother with dementia, both living until after it was well advanced. I never want my daughters to go through the stress, worry and exhaustion we experienced trying to care for them until they got to the stage where the need for 24/7 care - and therefore a care home - had become urgent.

As for relying on neighbours, it may be all very well when someone is just a bit frail. It's a very different thing if you chuck dementia into the mix. Then you may have someone knocking on the door umpteen times a day because they can't work the remote control, or have locked themselves out yet again. Not to mention knocking on the door at 2 am in their nightie asking to be driven to Scotland - actual case with a relative of mine.

We also had the case of an elderly aunt of Dh's, no dementia but increasingly immobile, who had plenty of money but consistently refused the carers Dh arranged for her - she simply didn't want to pay and thought her neighbours should do it 'for love'.

The trouble was that most of them were themselves elderly and decrepit - I would have the poor things on the phone wailing that they couldn't cope with her demands any more.
We lived a 2 hour drive away - it was extremely difficult until she was eventually persuaded - with great difficulty by my poor Dh - to go into a care home.

A number of posts have suggested that you take up skiing. I think this misses the point that your husband's time away is not just about the particular activity (it could be golf, walking, boating, cycling....whatever) it is about his time with his friends. This is really important female free bonding time for men, let him enjoy it. Sometimes blokes just need time to be blokes.

Woops. Wrong thread.

Hmmm. I had an elderly neighbour relying on me for some years.
As her dementia progressed, I ended up taking on all of the usual filling in forms, then getting her ready for bed every night, as well as hearing her tell various people that she had no money because I had stolen it all!

Most of us would prefer to stay in our own homes and I've always said that even if the care was excellent what would happen if someone suffers a fall between the end of one visit and the beginning of the next? This is precisely what happened with late MIL.
We used to have lots of psychiatric hospitals with numerous geriatric wards for our old folks who could no longer cope. Many have been closed and all these care homes are just like miniature versions with very high costs.

While I understand the sentiment behind male carers doing personal care of elderly women, in the six weeks care package we have just had only 4/5 times did we have a male carer. My H was washed, showered and dressed by young women.
How is this different?
I would have preferred to do it myself but couldn't.

In my opinion the problem began in the 60s , Jobs became scarcer ,and we were officially told to 'get on our bikes' and follow the jobs .
We did, moving hundreds of miles from family and friends , meaning our children grew up not seeing family regularly, and when they did , they'd travelled for many hours and were tired and fractious . Our parents never saw the bright and happy kids, just tired over excited ones , who they then spoilt because they hadn't seen them for months .
Moving on our parents now need help, love and care , but we live hundreds of miles away ,in jobs which we daren't risk by taking time off , Our parents cling to the old and familiar and won't move closer to us , because they still have familiar routines and places . Our kids now have children and live locally to us , so we are regular babysitters, and don't want to leave them behind to move nearer to our parents.
Our government don't need to worry about the explosion of baby boom elderly, we are killing ourselves trying to be all things to everyone and not letting anyone down .
Life was much simpler when jobs were secure, and families lived cheek by jowl in the same town , all there to help or advise . Children grew up knowing (and respecting) elderly relatives and the whole family rallied around when someone was ill or in trouble .
How often have you reassured distant parents or children that things were fine when they weren't .

Jane43, good points about the profits being made by the companies running residential care for older people.
The same applies with bells and whistles on so far as the companies running private residential/foster care for young people.
I don't see myself as an 'extreme left winger/communist" but I do find it nauseating that some see services for vulnerable people as opportunities to make huge profits. Alongside that, local authority services have been cut and privatised as. result of successive government policies.

It just is annsixty! Something about nursing/care always being a female thing. My neighbour is a very dignified and old fashioned lady. It's so sad to see her having to live like this.

I am just hoping we have a caring socialist government before I need help. Perhaps all those who voted for this lot should go to the back of the queue for our depleted services. Sorry to upset anyone but I am politically literate and I am so angry when I see what is happening to our country. .. and the last thing we need is a trumped up war with Russia.

As a former carer, both in the community and in residential homes I have seen the picture from 'the other side'. Carers are expected to work miracles in the least time possible. When working with the elderly, who don't move about very quickly, trying to get someone up, showered, dressed and give them their breakfast and any medication in less than an hour can be impossible, yet you sometimes only get allowed 30 mins to do it. I was always arguing with my team leader about it.
I used to get 15 min calls to give folk their medication only. But as you might be one of the few folk they saw in a day, they would obviously try and engage you in conversation and you felt so bad having to effectively shut them down.
If you called on someone who had taken ill or fallen or a piece of their important equipment had broken down, you had to stay and try and sort it out, while trying to get someone else to cover your next call. I often had to deal with these sort of thing and they can take hours to sort out and if it's a weekend when there is less staff on, it can be a nightmare.
Working in residential care you were literally going from one person to the next, getting them up, washed, dressed, depositing them in the dining room while you rushed to the next one. Then you would take one to the dining room and the previous resident would be taken from the dining room to the lounge to just sit. It was relentless.
Then before lunch everyone had to be 'toileted' and taken through to the dining room and so it would go on. You had no time to spend any 'quality' time with the residents.
Unfortunately, although we have found ways to keep folk alive longer, we have not thought about who and how, we are going to look after them. Not everyone is fortunate enough to have good health into old age. Some were so pitiful and would often say they just wanted to sleep and not wake up. Yet, there were families who would insist we got the doctor out, who would then insist we got the said resident up, dressed and taken through to the communal spaces. It was heartbreaking seeing some poor soul being put here, there and everywhere when they had no energy or wish to do so.
Yes, there are staff who you really wonder why they are doing this sort of job, because they are so uncaring, but there are a lot of them, who do love their job, but the timescales are so unrealistic, you are continually chasing your tail, trying to get the work done whilst trying to make the clients still feel valued.
The system is unfit for purpose and will only get worse, unless we stop keeping folk alive who have little or no quality of life and build more places like sheltered housing and very sheltered housing which is affordable for everyone and put teams of carers in to them, so residents can still live as independently as possible, for as long as possible, with continuity of care by the same team of people. And build in social time to visits for those who don't have a family that cares about them.

In learning disability support, the persons preference for male or female carers is recorded on regularly updated risk assessments, and adhered to.
In fact you will often see adverts for staff which state that they are exempt from advertising for staff of either sex, due to the nature of the job.

I still plan on being shot dead, in bed by a jealous lover.

No government can do much to change things I am afraid, what people will cannot do for love, others will not do for money, unless the sums are huge. 24/7 care isbeyond the reach of most of us.

I have seen astronomical sums, ma ny thousands a week offered to a care agency, to mind 3 children and that was years ago, it is a gravy train, for the people who provided private services.

Agree with Jane10 in that some care homes can be very good indeed. My mother finally stayed in one a few weeks before she died and she would have much preferred being there earlier, and would probably have avoided the fall that started her decline. But unfortunately my father, a very strong character, was determined she should stay at home, even though he was not able to look after her, and did not have in place the care she needed - obstinately refusing help and suggestions until it was too late . It was an awful time. The care home was a lovely place where my mother was very content and well cared for those last few weeks.

contact the Patient Advice and Liason Service at the hospital expressing your serious concerns.