Nursing homes for elderly people with dementia. A good thread derailed; can we try again please?

[OCSockOrphanage]

I know there were some people adamantly opposed to the idea that they might ever need to place their parents in care. but this was, I felt, a useful thread for all of us wrestling with the decision. Any takers for its continuation?

Having worked in Dementia care on and off for many years i really have every sympathy with those making the decision to put relatives in a home quite apart from from the physical hard work of dressing washing ,changing people that often dont want to be dressed, washed, changed people with Dementia can often become agressive and violent not always but often sometimes dont recognise their own family it must be heart breaking and i wouldnt wish Dementia on anyone its an awful disease.

I have a relative in a care & nursing home. We had to move them there, with much guilt on our part as there was nobody that could help. After the death of the relatives' spouse, carers were coming in three times daily to help with cooking and cleaning but no real attention paid to whether food was eaten or not. Then we started getting phone calls at all hours from relative, asking what time it was and when we were coming to visit. Relative was hallucinating, having falls, anxious, paranoid and neighbours (as well as us) were concerned.

It took a long spell of hospitalisation before a) relative realised they could not cope b)relative was diagnosed with dementia. We then had a horrible time reviewing care/nursing homes that were suitable.

I feel bad every day that I have effectively shunted a family member into care but I have a young DC, I am not home all day every day, I cannot do lifting and personal care, I cannot adapt my home to accommodate someone who is in a wheelchair 80% of the time. I feel bad that I am using that persons' hard-earned savings to pay for their care, but in the 20+ years they were retired, the money was never used for anything. There were many opportunities for relative and their spouse to have moved to sheltered accommodation and enjoy their years together, but they did not.

Now, at least when I go to see my relative, they are clean, they are comfortable, they are well-fed. They are warm, entertained, occupied. Although we have a diagnosis of alzheimers with vascular dementia, I see someone far happier (albeit with periods of confusion and paranoia), someone who can relax more, can participate in activities, can go on day trips, can go to the cinema, do some gardening, and generally get more out of their days than they have in the past 15 years.

Staff at the home are great - genuinely caring. There is a lot of 1-2-1 work and the staff know all the residents. Residents are allowed to bring their pets, and couples can stay together.

My dad has dementia & is deteriorating slowly. My mum is his carer & is beginning to struggle. He won't really acknowledge that he has dementia or access any services.

I dread what the future holds. Years ago, when my dad was diagnosed, my parents put their house in some kind of protected trust, where it will not need to be sold to pay for care home fees. I don't really understand it, and certainly would prefer he had good care rather than have an inheritance.

I don't live nearby, and have a 4-year old & a school age child. I wish I was closer & I could help more.

I know someone who was determined that his wife wouldn't go into a home. She was extremely confused and couldn't be left alone at all. He had to be with her 24/7. One day he emerged from the bathroom to find her dead at the bottom of the stairs. She'd fallen down and broken her neck. He had only left her for a couple of minutes to go to the loo. He deeply regrets trying to look after her himself now.

The problem with carers coming in is that if the 'service user' doesn't cooperate with them, the carers can't make them.

"Do you want to get up today?"

"Fuck off!"

"Do you need a wash?"

"No."

Personal carers aren't nurses and limited in what they can do.

Domestic help is another department, so personal carers don't go shopping, do the vacuuming or the laundry.

That's a different service which may not be provided by some councils.

It is soul destroying watching a loved one deteriorate in spite of all the money being shelled out for carers.

A nursing home is a far better option with nurses on hand for medication and health care assistants for the personal care.

ginger, but if the patient is like that in a nursing home, what can the nurses do?

If a person is declining support in a residential setting, the staff are able to return to that person throughout the day, and provide them with care and support, wherever the person chooses.

So if they have chosen to remain in bed for the morning, the staff can take them breakfast in bed, check in on them and remind him hem to have a drink, support with going to the bathroom for continence care. It's about the provision of support over a 24 hour period. After all, the home is the persons home, am sure we take advantage of getting up when we choose when not on school run, at work or whatever!

oh sorry Bread, I was imagining a carer in residence rather than a couple of hours a day. Totally my fault - I have a 95 year old friend with a resident carer and my brain just went there. Apols.

No need to apologise Gold, I may have missed what you were trying to get across, so apologies from me.

Equally though, for your friend who has the resident carer, the same should apply. Said friend should have the choice, and I'm sure this is much easier to accommodate in a one to one situation.

My dad spent his last two years in a specialist dementia care home. It was absolutely the best thing for him.
He put on lost weight, got fitter and stronger, started walking independently again because of daily physio. He had 18 months of greatly improved quality of life before he declined and died.

My mum really struggled with the guilt though and for her the effects were not great. She could not cope with him at home but could not cope with him in the home either. Her grief manifested as anger a lot of the time and she was sometimes verbally abusive to him. It was so sad.

There are professionals in this field for a reason! It can be more than a full time job.

Equally I take people's points about issues with standards at some homes. E.g.:

1. I had to tell staff to take a lady back inside - they left her in the sun with no protection (it was hotttest day of the year and she had no hat, sunglasses or water). That was shocking as if she got sunstroke that would've topped her (I realised she was 40 mins outside like this)

1. Different time - two carers were clearly friends. They were early 20s and clearly bored to death chatting to an old lady. They were just chatting over her - who was trying to talk to them - and so giddy and loud, they started throwing her napkin between them and saying "who do you like best, Mary? Who's your favourite?". She was massively confused but trying to smile and still continue her conversation (she wouldn't be able to really make out theirs). They then reverted to their first language which she likely would have no idea about, just horribly confusing for her all round. I spoke to them to pipe down and earn what they were being paid for (couldn't help it). This was at a really, really pricey facility mind you.

NB those are usually the exceptions. If you can find good care do what's best for your loved ones

I work as an activity co-ordinator in a care home and many of our residents have previously lived alone.
We have a number of residents with varying levels of dementia and it is really quite wonderful to see them retain their interests with a bit of extra help and support.

No care home/nursing home is perfect of course but I do really think that care homes can give the elderly independence and companionship when they would otherwise be lonely and struggling.
We have weekly music, shows, board games, films, quizzes and trips the library and the seaside.

I can't see any option than a care home should my parents need it. My sibling and I both work full time in different parts of the country and don't have big enough homes to put another person in. My father also has complex physical care needs already. Any time inheritance is mentioned I remind them that they may need to see the house to pay for their care, which is as it should be. Mind you, after a recent hospital stay in which he was surrounded by dementia patients my father is adamant hes taking the Swiss Air route , but lots of people say that.....

2 of my 4 grandparents had dementia and ended their days in care home and I have also seen it from the other side in a professional capacity.

I have absolutely no doubt that some elderly folk especially with dementia are much better off in a care home than with visiting carers (24 hr live in care is a lovely option but very few can afford it or have a suitable house)

Where standards are poor and there aren't enough staff this is nearly always due to underfunding. In care you 100% get what you pay for. It costs a lot to give good care.

In my area the Local Authority pays as little as 400-500 pounds a week vs the true costs which are nearly double that. The privately funded residents pay 1000 pounds a week and upwards and this is partly subsidising the LA funded people.
You could not stay in a Travel Lodge for the price the LA pays and yet people complain it's expensive. If you take into account all the bills, food, laundry etc as well as care you will see that good care costs money.

In places that are cheap and mainly full of LA funded residents they can barely cover costs so standards are lower. The carers are paid minimum wage and so recruitment and retention is poor and there's high turnover. Training costs money so that is skimped on. It's nearly impossible to run a really good care home unless you attract private payers.

I really don't get the issue with selling your home to pay for care. The Conservatives want to put a cap on lifetime fees but this will just make the sector more underfunded and worse quality. Still never mind as long as Tory voters keep their posh houses.

Playing devil's advocate here but if you are careful all your life, saving money, paying off a mortgage etc you get to use those to fund care. If you live the high life spending it all on wine, (wo)men & song and have no savings or house the local authority will find it all. Not saying this is right or wrong or the whole story, but it is a valid point.

Pen, but if you don't have money you are stuck with what with the LA will pay for - so for my parents that would be 4 visits a day perhaps, no help with cleaning or looking after the house and no one taking them out or anything or keeping an eye on them. My parents are managing to hang on at home as they have private carers, cleaners, handyman, gardener and a carer that takes mum out. Their lead carer liases with the district nurses, will be there when they come out of hospital, pops in if she's worried about them, sorts mums clothes out and a million other things. When they've had agency carers they are nice enough, but only there to do a job thats on their list.

Never feel guilty for arranging for someone with dementia to live in a home. Often they are desperately unhappy in their home and don't even recognise it as home (instead remembering their childhood home as 'home' and trying to find their way back there - very distressing for them)

Some homes are better than others but you're much more likely to find a good standard of care from HCAs working with other people and constantly having their working practice observed than the ones who drop in for ten minutes in the evening to make a cup of tea and leave again.

I have worked in dementia care for years, now work for a Carer support service in the NHS.

I'm very passionate about support in the community for people living with dementia and the people that care for them, and without those carers our NHS would be more fucked financially than it already is.

It's takes a Carer/families to hit crisis point before they consider nursing care. That crisis point will be different for everyone.

You have to factor in familial relationships, other caring responsibilities, work, how changing behaviours manifest in the person with dementia. No two people with dementia will have the exact same presentation. These are individuals with a lifetime of memories and experiences. Lots of people can mask cognitive impairment simply by defaulting to particular behaviours etc. It can become very dangerous because of this because sometimes the risks are not so obvious until a crisis hits, like setting fire to the kitchen, for example.

Carers who make the very brace decision to accept that they can no longer continue with that responsibility go through a grieving process. It comes at a great cost to their own physical/psychological wellbeing.

It's awful when you hear about poor nursing care, its devastating to the family members who have had no choice but to put them there.

My experience of nursing home care is generally positive though. What works for one individual doesn't work for another. My FIL is in a care home (not due to dementia, although has some cognition problems, he needs qualified nursing care for physical health issues), all he wants is a pie and ice cream and to watch TV all day and he's very happy there. He was never socialable so he certainly wasn't going to change and join in social groups put on by the home, but if you saw him everyday while visiting someone else you'd think he was being neglected etc. He isn't, he loves the peace and quiet and watching snooker 😊

Reading this brings me right back to the time when both DPs (now sadly departed) needed to move to a Care Home. For us the final straw was when mum set the kitchen on fire within a week of the decorators leaving the house which she'd flooded when she left a tap running in the bathroom. And although I'd be lying if I said that they were happy to move, sadly there really was no alternative.

Just 2 things I'd like to add to all the great advice here for anyone about to go through this. Firstly try to make sure that wherever you chose can cope with the dementia as it worsens, rather than expel them when it all gets too much. This happened twice to us, and was really traumatic to both DPs. In hindsight I suspect it wasn't a co-incidence that my Dad died shortly after the 2nd move.

The other thing is that there's a point for many dementia sufferers that, if they live long enough, they let go of their 'old' lives completely. Although it took some getting used to not being recognised by your mum, it was only then that she seemed to find any peace. In many ways the last 2 years of her life seemed to be much better for her.

Sorry about all the typos - I'm on my phone

What we find is that as soon as a Carer solves one problem, another crops up and it's a never ending cycle of fire fighting.

We ask them what their ideal scenario looks like, and it's different for everyone but they all have the same goal. They want the person they care for to be safe and feel loved, and ultimately it ends up with full time nursing care in most cases.

Don't be sorry MissLupescu - that was a fabulous post to you and everyone else who does such a good job in our care homes

My mum categorically refused to leave her home, long after it was safe for her to stay in it and many months after she had stopped setting foot outside alone. She had regular family and social services visits but she refused overnight care in her home - and anyway the only way to pay for it would have been to sell her house, so it's an impossible circle. In the end, two psychiatric nurses came one day and told her she was going to an appointment and hurried her out of the house, and she never went back.

It is so hard - I have been there and done that all twice.

The simple fact was that in the area where I was looking for a suitable nursing homes, I saw places that would make your hair stand on end. I used to work on a dementia ward, so know something about what is good or bad care.

These places truly were beyond appalling - I could not imagine how they retained their registration. I cannot outline all the details as I find it too distressing now - and my poor Dad was in bits when he looked at some of these for my Mum.

Eventually we found a residential home that we felt was right for her - and the ward went bananas because they said she needed nursing care. But we went with our gut instinct and they cared for with such love and in such a homely setting until she died.

When my father needed care we tried care at home and it was some kind of nightmare - he needed a 24 hour sleep-in carer + a waking night carer; and they were so unreliable - one walked out after 24 hours without telling us he was going! - chaos! Eventually he went to the same home where my Mum had been and he too was well cared-for and died a peaceful death.

Nursing or residential home care can be brilliant, but it can also be seriously grim. My advice would be to shop around and go with your gut instinct.