Heartbroken that I'm being forced to sell mum's house, she worked hard for it and paid her national insurance

[Jkoakham]

And now her savings are running out I will need to sell her house to carry on funding it.

It all seems to very unfair, her house was supposed to be passed to me but instead it's affectively passed to government and private companies.

I thought the dimentia tax had been can cancelled?

The end stages are when it becomes medical. So as I keep saying it starts off as a social issue and turns into a medical one. You don't wake up one day with severe dementia, it's a progressive degenerative disease of the brain that can take years before medical interventions are required or indeed years before any formal support at all is required.

People with dementia are still people. They are more than their disease, try treating them as such.

The real problem is doctors pumping elderly people 85+ full of antibiotics when they have advanced dementia. When will society let people have natural deaths instead of prolonging for years whilst they lose the ability to walk, talk, feed themselves and are doubly incontinent. I don't get it.

The thing is anyone can spoon feed someone or change their pad. It’s not really a medical thing. Sometimes dementia patients need proper mental health nursing when they become violent and aggressive and there is funding for that I believe. Usually the condition can be managed by either family members or people with limited qualifications, It doesn’t normally warrant medical attention, but when it does they see a doctor or nurse and get admitted hospital like everyone else. I was able to look after dementia patients from the age of 16 with just GCSEs. There is some medication for dementia now which they get free of charge obviously. We cannot expect the state to pay everything, the NHS is already billions in debt.

I stopped them prescribing anti biotics for my mum. She had seven lots between January and July. I told her GP to just knock it on the head, it wasn't helping anyone.

Yeah anyone can! its this silly attitude that has lead to the low status of careers and ultimately why we get such sorry tales of abuse.

You'd need to be very far gone before going into a MH unit, being violent, non co-operative, throwing bodily fluids around as this person (who anyone can change) is cleaned up, will not get you into one of the very rare MH unit beds.

My Nan, attacked her daughter with a Vase as she thought she was a burglar, no extra support was given, let alone MH involved, the system isnt funded to that degree, all care was deemed social until she died, despite many episodes of some quite frankly very scary behavior.

Ohtheroses, If the person stops swallowing due to dementia normally doctors put the patient on end of life and death is swift. Bedsores can be prevented by turning the patient every four hours and a special mattress ,
anyone can do that so not medical unless it become infected then patient goes to hospital or gets antibiotics to take and community nurse does the dressing. Strokes are medical, but when they are acute they are treated free of charge in hospital not nursing home.
Again pain management can be done in the community, a gp can prescribe this free of charge.
Anyone can feed someone from a sippycup.

Anyone can do that of course. But not an 85 year old spouse 24/7 or their 60 yr old daughter with rheumatoid arthritis. Care staff, drs, nurses get breaks. Carer's don't. This isn't about a silver haired lady who forgot to feed the cat and pay the leccy.

You'd be surprised how many spouses care for their other halves who have dementia and for how long. Often the family can be oblivious to any of the early changes because she spouse successfully covers it up for them and it's not until a crisis happens they ask for help (or don't ask for help as the case may be!!)

It's shit caring for someone with dementia trying to convince them to have a wash or change their clothes or put a continence pad in. Telling them for the 100th time who you are what the day is that the milk goes in the fridge or to take their tablets. Then as the disease progresses whether you have to manage night waking or faeces hiding or wandering out the house...

It's not nice it's stressful it's horrible to watch a loved one go through it it's horrible to support a loved one through it

It's still not a medical issue.

You see it is the - anyone can do that attitude - that stops people with dementia getting good care. Sure anyone can change an incontinence pad. But there is lots of action based research out there that shows good dementia care requires a real understanding of dementia and usually decent training in dementia. Because the issue is not just the physical task. But how you relate to and what you say to a confused and often distressed person.

I whole heartedly agree and believe domicilairy care agencies should be providing this extra training for their staff (indeed many do) but to get the TIME which is what is really needed we need to increase social care funding through taxation. Or, people need to stop protecting their inheritance and pay for properly trained staff.

Time and patience goes a long way when managing an individual with dementia. You want that you need to pay for it - directly from their savings or indirectly through taxation

It's still not a medical issue

Yet you call for extra training for care agency staff, if its not a medical issue, why do they need all this extra training? so they become HCA's or even Nurses?
As i ve said before, a few people selling their houses is not going to solve shoddy care, bed & staff shortages, bed blocking on all Hospital wards.
I doubt anyone wants a 2 tier care system, with only the very wealthy getting excellent care and everyone else the poor house.

We dont accept this with other diseases and there is no reason accept it with dementia.

However well funded free social care was you'd always have a two tier system. State funded care would always be grim and there would always be people willing to pay for a better standard than the state could provide. But we're going round in circles, we've both said this before, Jas.

No my gran got excellent social care in a council run nursing home, that has now been sold off. The surroundings were not luxurious but the staff were brilliant.

Just because you say it would be grim, doesnt mean it would be.

We ve universal education, available to all, thats not grim, why would care for the elderly be so?
You ve still not answered that nor how the current ad hoc system would prevent bed blocking, currently costing the nhs £3 biilion per year, not to mention the human cost of cancelled ops and long waits in AE.

Only 44% of long term care is privately funded, why should the remain 56% accept sub std care?

You'd be surprised how many spouses care for their other halves who have dementia and for how long. Often the family can be oblivious to any of the early changes because she spouse successfully covers it up for them and it's not until a crisis happens they ask for help (or don't ask for help as the case may be!!)

This is so true. When mil got dementia, the whole family was clueless as it had never been seen before (people had died of diseases, of course). What started off as a bit of dottiness progressed to downright rudeness, but fil valiantly covered up and also was in denial himself. To cut a long story short, bil managed to get the GP to come in, and fil swore blind that mil had been doing their tax return that morning and she was now "back to normal". The crisis for the pil was when some care was arranged and mil attacked a carer.

Extra training by way of better understanding of how to communicate with a person with dementia, what is and what isn't appropriate ways to manage dementia behaviours, how to clothe and bathe a person with dementia. Nothing medical just upgrading the skills they're already using and need to care for a person with dementia. What they need most though is time with the person. That is what costs though

Care homes are subject to Cqc regulations and get inspected annually. Any grim homes would be quickly shut down.
I worked for a Local Authority care and nursing home for a number of years and it was a place of laughter and happiness. I loved working there and the quality of care and devotion given to residents was second to none.
It was also a dementia registered home.
Residents with dementia can be incredibly challenging, especially if they require up to 3 for care or are aggressive and violent.
I remember an incident where a resident smashed another residents window and hit a member of staff. Called the police and was laughed at down the phone and they refused to help at all.
There is a definite misconception that care homes all smell of wee and are places of boredom and death. I still go to volunteer at my old home now.
I said earlier, if anything is truly at fault it's the medical profession keeping people alive for the sake of it and not for anyone's benefit. Definitely not the patient.

Frankly dementia is worse than any other illness, as it destroys good memories of the person. It would take a saint not to feel irritation, exasperation, or downright hatred of this thing a person has become.

Some neighbours converted their garage into an annexe for the grandma. Just weeks after she moved in she began to behave oddly, and it culminated in her hammering on her son and dil's bedroom door and screaming at her dil, and trying to get in bed with her son. That coupled with the (active...) incontinence was all horrific and what was a good intention ended with the old lady having to be put in a home which they had sworn they would not do.

In that case I'm a saint. And the good memories of my mum haven't been destroyed. In fact some of the good memories I have are of things she said to me in her final months. It obviously helped that she didn't have aggressive, shouty dementia.

In looking for a suitable care home I viewed places where I wouldn't put a dog. And the alleged NHS rehab ward we sprang my dad from after a week was like a circle of hell. Nothing I saw of state provided elderly care would persuade me to ever allow myself or anyone I love to be subjected to it.

Mil was in a rock bottom care home (the only one that would take someone with the "loud" dementia) and then fil joined her. It looked like a run-down Butlins and most of the residents were council funded. The decor was pure 70s, but the staff were really lovely.

Following death of mil, bil insisted on moving fil to a "nicer" home in a "naice" area. From what I've seen the staff are pleasant enough, but mostly do not have English as a first language and therefore do not really interact with the residents. The whole place looks smarter and it costs more than the old place, but if you're after kindness and people to have a bit of banter with the residents, then don't discount the tatty-looking homes.

People saying self-funding gives you choice - well, it only gives you choice if you have absolute megabucks. The cheapest home is in excess of £30K a year. I think you probably need to be paying three times that to get a really genteel experience.

In the urgent search for a place for mil, dh viewed one home where on the ground floor were people who were quite doddery, but chatting, playing bridge etc. Then the second floor people were watching television in high-backed chairs. The third floor had only one exit...

Yanbu
My OH has a form of dementia.
The reality is he hallucinates, is paranoid and can be aggressive, but apparently it still only counts as a social issue. He has made unfounded allegations against me and I now try not to be alone with him or allow my children to be alone with him. Because of this my work is limited and my career is history. We are now struggling financially and my OH is now refusing to contribute to his children.
Social workers state he might need some help with activities of daily living eg washing or changing his clothes! Saying it is a social issue doesn't help and allows social services to effectively ignore the realities of this dreadful illness.

you look after her then in your home and not in a care home that way you arent paying any fees.

The really genteel experience here costs around £55k a year.

Good post redbannas and i hope that the situation you are in improves.

in response to ihatetosay. Good idea if you can afford to give up your career, kiss goodbye to a decent pension, kiss goodbye to any
form of social life or freedom and don’t have children or any other person who might have a claim on your time.