Mumsnet Talk

I think she is deluded. Very well meaning towards her mother but not doing those who have had no choice but to put a parent in a home any favours. They already suffer from guilt in the large majority of cases.

I work in a care home for the elderly with mental health problems.

Not long ago I was chatting to a relative who asked how their DM sleeps at night. I work nights most of the time, so was well placed to answer. I told her that her DM comes downsatairs maybe once or twice a night and she said 'Oh terrible, how do you manage when I couldn't'.

I made it very clear that managing when I work a night shift, then go home to bed is one thing, but managing that and then managing a person with dementia who could very easily be a danger to herself and others all day with little or no sleep are two very different things.

I, like all my colleagues, love my job, and the people in our home are all very well looked after. Our boss has high standards, and only employs those with the same standards. All this in the news about care homes not being very good is also upsetting for relatives and piles on the guilt.

Yes, there are bad homes. Yes, there are bad carers. In my experience though, of 28 years, most are good. Those that aren't good will soon come across someone willing to report them. I do aknowledge notable exceptions.

Thank you for doing a wonderful job, I did your job years ago, and I take my hat off to anyone who does it, very difficult.

I wish there was enough money to make the standards go up, and protection for whistle blowers,

my grandmother was in a wonderful home in which the staff were amazing, they gave her the highest level of care, even if we had had the entire family in the same place, I very much doubt we could of met her needs at the same standards it takes a lot of skill,

the care needs to be valued and the pay should reflect that, in order that staff feel respected.

God I hope my Dad didn't watch it. He is seventy three and coping, essentially, with a five foot toddler who is awake at all hours. My son's five-year sleeplessness nearly killed me and I was in my thirties. But he improved. My Mum is only ever going to get worse and could live for another thirty years.

She deserves to be cared for by someone who is well-rested, professional and has had a break in the last twenty-four hours.

Mamma, any tips on how to work out which care homes are good? Mine and dh's parents are dead, so it's not something we need to think about in the near future......but one never knows what is round the corner. Someone I know has a dh with early onset dementia (he's late fifties) and she is nearing the point where he may need to be in a home.

It's just not that simple, is it? I'm a nurse in elderly care and people say to me I don't know how you do it but the point is, we clock off!

24/7 care for someone who can't be rationalised with. We see some relatives come in and they are utterly exhausted. In most cases, maximum care is 21 hours a week in our area. That's 2 carers, for half an hour, 4 times a day. Those caring for people are on their own 22 hours a day.

I have two Grandma's with Dementia, both in care homes because they couldn't cope at home. One we had to make the choice for, one who chose to go to placement. I cannot fault the care of either care home. It's the best thing for both of them

vesta have a look at this recent thread for some excellent advice.

While I was a teenager, we had a relative with dementia living with us till she died. It was terrible, the whole family were traumatised.

We got no help from social services & back then (25 yrs ago) we didn't know enough about how to get any help.

My poor gran would try to walk along the window ledge of her room, or if she managed to get out, had to be found. It wasn't safe for her.

I wouldn't repeat it ever. I don't think it's fair on the sick person or the carers to try to provide safe care at home unless you can get good help.

Never? Even if her mum was awake all night screaming the most horrible abuse at her? Threatening to kill her? Threatening to kill herself? If she couldn't be left alone for a moment as she would be wandering the streets with no clue where she was? If she had to keep her mum away from sharp objects in case she tried to hurt one of them and away from pills in case she tried to overdose?

I agree Mamma this is why I encourage the families of the people I work with to lean on us as much as possible. Many of my clients have dementia and yes, they can be difficult to handle sometimes, but it's a hundred times worse for their relatives. Of course it's up to the individual, but I have seen the strain of caring for people with dementia long term and I think this lady has no idea what she is in for.

Providing practical care at home is one thing, but when you add in the emotional stress of seeing your loved one decline, it's more than most people can bear.

I agree too that professional care is an option that people should use. I dread to think what would have happened if my nan had gone to live with either of her children. My uncle's wife became terminally ill and died while my nan was alive. They couldn't have looked after her and dealt with that. My parents would probably have worn themselves out. We wouldn't have been able to have Ds because we knew it would involve weeks in hospital. And we couldn't have visited with little children. My parents wouldn't have seen the gc.
My mum felt very guilty but it was the only way to keep my nan safe.

(I just managed to see it on catch up)

The problem with such sweeping statements like hers is that they are not founded on a clear understanding of the nature of Dementia. I promise I'll never put you in a home are words many people live to regret. People who move in only to have situations like Kotinka and OhBananas describe and other things - like putting plastic kettles on gas Hobbs? Seen that before! It's ok to say on principle that someone can live with you but what about when their condition deteriorates until they are recognisable? Or they don't know who you are?

I thought it was interesting that she quoted that 80% of people in care homes have Dementia. I suspect that its because a lot of the time physical disabilities can be supported at home but cognitive impairment poses a very different risk. She also said something about half of those 80% having a poor quality of life. One of my Grandma's has a poor quality of life - she has advanced dementia. She is bed bound, doesn't recognise anyone, nothing stimulates her at all. That's no reflection in the care at all. It's just the nature of the disease!

My friend's Dad was fond of taking boiling kettles up and down the stairs. She was petrified he would trip over their dog and scald both of them. My Mum is at the wandering stage and it is incessant, she never stops and my mate's Dad was the same. Even when he did eventually fall and break his leg, he tried to get up even while whilst sedated and broke it again! There is something so compulsive about it...

The lack of stimulation is one of the saddest things I think. I keep wanting to find something for my mum to do with her hands because on the rare occasions she is still, she hasn't the mental capacity for jigsaws, books, even listening to an audio book or music. Conversations are impossible. No wonder she is always on the move. I did once let her separate out my rolling tobacco in a big dish and she found that quite soothing for a while. I might see if she wants to fiddle with some sand when the weather gets better.

I agree OP. It may scare someone into making a decision that is not in their or the person with dementia best interest.

I work on a care of the elderly medical ward for the NHS. Most patients admitted have dementia. A hell of a lot of them are admitted with acopia (unable to cope at home) many are admitted from residential home because their condition has deteriorated so the home can not longer cope.

I have no doubt the lady has good intentions and is well meaning but unless she has previous experience of caring for someone with dementia, I think she is being a bit naive. It's bloody hard work and mentally draining, as well as physically at times. At least the caring professionals can get that break by going home for a rest. It's extremely emotionally draining for the relatives too.

I would like to think I would be able to care for my DM or any other family member if they were diagnosed with dementia but I know the reality of such care thats needed. I take my hat off to anyone who can do it 24/7 without a break.

Audrina, she might like wool to wind or scraps of material to sort out. My nan sorted stuff incessantly in the middle stages and she sang along to music right up until the end.

I saw her and though 'oh dear' what happens when she cant look after her anymore, we cared for my nanna with alzheimers (sp) between me mum and a few aunts and carers she did eventually have to go into a carehome my aunts and mum were devastated but it really was the best thing for her and everybody,

I did think of sorting coins from the change jar but that might be a bit beyond her. Winding wool is a brilliant idea

My Dad finds it hard to understand how bored she gets, being unable to think, remember, make plans... And he didn't look after us as babies whereas I can still remember letting my toddler sort washing pegs and pull everything out of the kitchen cupboard where the plastic unbreakable things were kept.

She just wants to be doing something and still wants to feel useful

Audrina, have to considered a rummage box? You can put all sorts in there.

Some of our patients need this kind of stimulation, it is tricky but I've taken patients to the big laundry cupboard and got them to help me fold sheets and hang clothes. Or give them forms to sort out (blank forms that is, nothing important)

What did she do before retirement?

About 10 years ago, in a pub, my DB announced that he'd never see either of our parents, then 70 and well, go into a home. I nearly inhaled my pinot. I am a front line HCP (and wife and mother), he is a white van driver, who lives alone, renting, no dependents, hand to mouth financial situation.

I guess the thing is, the type of people who state that, in common with those who decry 'nasty nurses' (I'm not a nurse) actually have no idea what dementia looks like. They never see it because it is in care homes, in hospital, in a locked bedroom in the attic of a local house with someone desperately trying to 'cope' whilst going out of their mind with exhaustion, anger and guilt. It's rarely out in the public eye.

Currently my mum (now 80, still well but widowed!) is getting quite upset for a friend of hers who's 85 and also well enough. This woman's eldest DD, 55, has just permanently returned from abroad, moved in with mum and is more or less forcing mum to sell her 3 br bungalow (on a big plot) in order to use the money to buy a 4 or 5 br place so the DD can live in more comfort, in a location more convenient for her, and provide a place for her own DD, 20, to come back from uni to stay at, and, maybe her DH who may come over from abroad. The trade off? 'Mum, you'll never have to go into a care home'! Says she who works full time and couldn't be more selfish if she tried.

And of course, that brings up the issue of 'paying for it'. See, I personally have no problem at all of selling mum's house, 'come the day' to pay for a good nursing home. The blatant outrage of the middle aged that 'mum, who's worked hard all her life should have to sell her dear little house (the one she'll never return to, and have you seen what the neighbouring houses have gone for?) to fund her elderly care is 'disgusting'' is actually the squeal of those who don't want to see their inheritance 'squandered'.

As a final aside, I have a real problem with my mum: she wouldn't give me POA when I mentioned it 7 years ago when dad died and we were talking of such matters, saying 'It's my money and I'll do what I like with it' thus proving no understanding of what POA is there for . What she doesn't 'get' is that, 'come that day', DB, who as mentioned above, is pretty much penniless, would ship her to the cheapest council care home he could fine, wherever that might be, to minimise the costs, citing 'Mum's completely out of it, she won't know any better'. And the part I feel a bit guilty about is that, come that day, I'm not sure how hard I'd fight for her given that she's now proving too daft or short sighted to recognise that her DS wouldn't maybe have her best interests at heart, 'loveable larrikin' maybe, but eye-rollingly irresponsible, whereas I'd've hoped that my actions towards her since she's been widowed (and before, I should add!) should demonstrate that I am both a caring and dutiful DD! And would 'see her right'.

Sorry, off OP but quite cathartic to type!

have you - not have to

My dad used to have a teddy in a little hat and jersey that he used to dress and undress to keep his hands busy. This was quite near the end and before that he would be driven to complete and violent fury by anything that he considered childish.

MY PIL have just moved in with MIL's elderly parents to care for them. Her dad has the early stages of Alzheimers and her mum has dementia. She promised her parents years ago she would never put them in a home. FIL visited us last week and started to cry; I don't think either of them realised how hard it would be. My heart is breaking for them all. The pressure on them is immense and they're also looking after MIL's brother who suffered froma brain injury many years ago and is unable to do many things.

MIL will not even discuss them getting specialist care, she threatened to divorce FIL for even mentioning it. She's lost lots of weight and is clearly not coping but won't accept any help! We've offered to care for them for the weekend many times to give them some respite but she won't hear of it. I wish there was something we could do. It must be utter hell watching her parents deteriorate before her eyes.

Hospital receptionist but before that she worked in admin. The medical records dept was an amazing place, files and folders everywhere. I can get A4 paper in different colours and matching wallets! Tell her I need help for one of the DGCs school projects

I have told my children that if i ever get dementia that I want to be in a home I dont want them to care for me,

Actually while we are on the topic, I was appalled at the idea of Alzheimer buddies that David Cameron was suggesting. The idea that we should be helping people to get on buses, use the cash points etc seemed to address problems elderly people might have but not those with dementia. My nan would have cheerfully explained why she needed to get on a bus to somewhere she hadn't lived for 60 years. She could have gone anywhere. She was plausible for a long time. Helping her could have caused chaos. You don't help toddlersonto a bus.
It seems there is a fundamental misunderstanding of what form the illness takes.

This thread is sad reading, but I agree, you can't possibly generalize like that and it is a pity she did because it will make people feel guilty.

However hard you try to look after someone at home, unless your family happen to be a team of professional nurses, it's going to be so hard to give a good standard of care. Obviously most people won't want to go into a home but you weigh it up against all the things that you're doing wrong, even if you mean really well, because you're tired and not trained, and it's hard not to see the sense in it.

We had my gran at home until her last few days when she was in the hospice, and she had brain cancer so wasn't in her right mind, and it was such a huge struggle. I'm glad we did it but I still feel guilty for all the things we got wrong, or didn't manage to stop her from doing in time, that trained nurses should have been there to prevent. She was fine, they weren't big things - but, she was only sick for a few months. How the heck someone could do that for years or even decades is beyond me. In so many cases, it must just cease to be anything except a grinding torture for the family trying to care, and not honestly a great standard of care for the elderly person.

I am only 68 now and dh is 76. Our dc have done the ,"We will never let you go into a home ." We both feel that if Alzheimer's/dementia strike we want them to do just that. What we have been and what we are now isn't necessarily what we might become.

Tansie you have my sympathy. My aunt and uncle who will get POA for my Grandmother if they ever get round to arranging it for her (they don't like to as it means acknowledging something bad might happen). She is 93 FFS. It is highly likely she will need POA at some point. Soon.

Anyway, I digress, my Aunt and Uncle have put the fear into Gran that she might need residential care and have to sell her house to pay for it. I am appalled. I said quite plainly that my sibs and I (our mother died so we will inherit directly) want her to live in the best place for her. If she has to sell her house and spend the cash to acheive that then that is what needs to happen.

My brother and I are debating whether we should just arrange and take our Grandmother to visit a solicitor. She wants to go. They aren't taking her. In view of our mother's early death we are much more realistic about death / incapacity.

People who promise people they won't need to go into residential care are often seriously blinkered as to what providing care at home involves.

My most reassuring chat recently was with my other set of grandparents. They have beautifully written, Sensible, properly registered POA arrangements and I trust the person they have chosen implicitly.

lunatic - we cross posted, but oh yes, 100% with you there!

David cameron is an arse if he isnt telling us to hug hoodies he wants us to man handle the elderly onto the the bus <rolls eyes>

My Gran used to light the gas fire in these easy steps:
1. Turn on gas in living room.
2. Walk through to kitchen with two possibilities.
3a. Forgets what she's doing and leaves the gas running
3b. Rolls up newspaper and lights it from the gas cooker. (may or may not remember to switch the cooker off afterwards)
4. Walks back towards lounge with two possibilities.
5a. Forgets what she's doing and puts the lighted newspaper down to do something else.
5b. Lights fire with newspaper.
6. Blows newspaper out (hopefully) and puts the newspaper on the side of the sofa
7. Sits down in chair.
8. Goes to sleep.

Add into that she did everything very slowly, plus was unsteady on her feet, so at any stage you could add the possibility of "falls over and can't get up"...

That was the point df realised he needed to get professional care as he couldn't keep her safe. It was kinder to get professional care than transport her 200 miles away from her friends and all that she knew.

I think that making sweeping statements and promises about not putting someone in a home is deluded and damaging. My father had severe dementia that progressed very rapidly. He became extremely violent and unpredictable. At one point he hardly slept and wet himself all the time. He was always on the move and could not be left alone for even a minute. My mum took him to a respite place with the intention of leaving him for a few hours and he went completely crazy. He was arrested and then sectioned. Even when he was in hospital and medicated to some degree, he was unpredictable. He had to be dragged off my mum more than once and it took two or three staff members to restrain him. He would have killed my mum if he had stayed at home, I am convinced of it.

Try it Audrina, it may work. I've done it with patients who were secretaries etc.

We've had one lady who used to be a landlady of a pub. She used to think our day room was her bar. She used to collect cuos and plates and 'lock up' at night.

One lady was a matron on a childrens ward and used to wander about looking for the kids. One of our nurses arranged for the local school choirs to come and sing in the dayroom. She adored it.

Didn't want to politicise the thread. The misunderstanding crosses political boundaries, I dare say.

<whispers> but yes he is.

Yes, I'm sure it crosses political boundaries. I don't think very many people in government have a good sense of what's needed, or we wouldn't be in this situation. It's not as if there's been amazing care at any time I can remember.

lunatic I never need a reason to point out what an arse he is,

I agree it is unfair to ask your children never to put you in a home or hospital if it is needed so much pressure on a family imo

Ive said that too Mrs Jay.

I also plan to move (with DH) out of our house with stairs into a spacious flat which is within walking distance of useful shops and transport so that we can remain independant for as long as possible. We are in our 50's now and plan to do this within the next 5 to 10 years while we are still young enough to enjoy and cope with the process.

My parents have lived in their marital home (5 beds, garage, big garden) for over 50 years and are now in their late 80s. The house is much too big for them and full of "stuff" - most of it lovely.

They recently had a stairlift installed but are adamant that they are now too old to move. I have offered to help organise a move numerous times over the years. I am cross that they didn't move to a big flat years ago and don't plan to repeat this scenario myself.

It is political though, isn't it? The standards of care homes, the care availability in the community, it's all dictated from the Government.

My mum promised my grandad that she would look after my nan. But that meant getting her good care not killing herself by trying to do it herself.

Tansie my sister said that in front of the dementia nurse once. And she worked as an in-and-out home carer for years! She doesn't even ring my mum because she doesn't have the patience to try to make conversation and doesn't give a shit about her daily life although she was very interested in my Mum having a personal budget from S.S and access to it

Luckily the dementia nurse was very stern with her and said, "Could you do it for thirty years without a break, really?

I didn't know that about Dementia friends and Dave. He seems intent on having disability classified as purely physical hence people with dementia being physically helped at the cash-point and onto buses no matter how inappropriate.

Echoes of Mrs Thatcher's Care in the Community, anyone?

We had three grandparents and a great aunt living with us at different times when I was growing up. It was great while they were healthy, but we had a most traumatic time trying to look after my great aunt after she had a stroke and was really not herself - severe Alzheimer like symptoms, incontinence, aggression, you name it. All this while my grandad was living with us as well, who apart from a it of dementia and mobility issues was basically ok, so it was traumatic for him, plus both my parents worked full time and I was away at university, though I tried to help when I was at home in the holidays.

I was very worried for my mum mainly as she had had a heart attack a few years earlier and it was causing her a lot of stress. Eventually we did put my aunt in a home for what turned out to be the last few weeks of her life - basically I don't think she wanted to live without my great uncle anyway who had died not long before. I felt awful as in a way her death was a relief, especially to my mum, and also you want to remember them as they were in good health. So I do have some understanding of what people go through in these cases. I would always try and take relatives into my home - if that's what they want- it can be a very positive thing when you get on well, they can help you, you help them, it's lovely, especially for grand children. But there is a point when if someone becomes ill you can't look after them, and I perfectly understand that too.

So many people on here going through it. Happily most are in homes.

I have told my own mum I could not do it and she wouldn't want me to.

I have told my eldest DD, who is 18 next week, that I wouldn't want her or her younger siblings to look after me either. Visit often by all means but not kill themselves trying to care for me.

I love the idea of winding wool. I shall suggest it to the Activity Coordinator. I think some of our old people would like that. Similarly, winding bandages, recently seen as a task given to the elderly nun on Call the Midwife.

They have a lot of different activities and there is a sign up with a list of little things staff can do with the residents if they have five minutes.

Tansie I actually worked in a big psychiatric hospital at that time. It was horrific. People who really had known no other home trying to get used to the idea that they were going to be living somewhere else. I don't necessarily think that the big Victorian institutions was the ideal but the way it was done was just cruel.

My dad has been caring for my grandma who has dementia for the last 10 years. He has help from his sister and they now have carers in three times a day to feed her, get her in out of bed etc. She has a decent quality of life and probably wouldn't have lived as long as she has in a care home (she's now 92). But that's not because a care home would necessarily provide poor care but because of the type of person she is and because my dad etc are pretty much on hand 24 hrs a day so she has one on one care.

But I don't think I could ever do it for my parents, it such a sacrifice and isn't necessarily the best solution for everyone. It has meant my dad has led a very retricted life, he can't do anything spontaneously, the house they live in isn't really suitable for him or my grandma (old and needs loads of work doing to do it) but they can't afford to move anywhere else, he has had sleepless nights for years so is knackered, it has taken over his life so when she dies he won't know waht to do with himself, he has lifted her without a hoist so has probably knackered his back, and he's 70 next year! I worry that he will die before she does.

And she doesn't have the first clue who anyone, including my dad etc is and hasn't for a long time so has no idea what her quality of life is actually like.

The last few weeks she has been particularly bad at night so for the first time my dad and auntie have for the first time talked about the possibility of her going into a home if this continues as they can't possibly sustain caring for her.

I put my Mum in a home when she could no longer cope alone at home. I had young DCs & a DH who was away for quite long stretches at a time for work.I could not have coped & when she became agressive & doubly incontinent I know I could not have coped.

I would highly recommend 'Keeper' by Andrea Gillies as a very good book about looking after someone with dementure &eventually putting them in a home (it was her MIL).

My grandma was in an excellent specialist Alzheimers home for over 12 years. She wound wool for years - some women could still knit, and others couldn't wind but liked pulling apart old jumpers, so people donated old pullover and they got a bit of a production line going.

Peg puzzles and treasure baskets like for toddlers went down well with some of the ladies.

Meanwhile Grandpa moved to a residential home where he was very popular, one of only two men there.

I'm very glad my parents agree that they will probably need a home in due course, as I'm an only child. And that they didn't downsize to a place in the middle of nowhere, but to a house next to others and near GP etc. Unlike ILs who thankfully moved to a house easy to look after, but they have to drive everywhere.

magimedi, I shall look for that, it sounds worth a read for me too.

notcitrus the trouble with toddler type things is they are not considered age appropriate. Ours do colouring but they have to be grown up pictures. We cannot be too patronising, even if they are not totally with it, they do not like that.

They do simple word searches and grown up 'find the item' pictures.

They also do excercises in their chairs. We make good use of the internet, looking up favourite old recipes, pictures of where they used to live etc.

Mamma, If you want to PM me your address I have a spare copy I would be happy to send you. I bought it for a friend but her DP died so was no longer appropriate.

Nocitrus, my parents have given me criteria for a home for them! Dad wants wine. Mum wants a conservatory with a nice view.

Completely agree too about moving somewhere sensible. My fil moved further away from us when he retired. A long way further. To the arse end of nowhere with no facilities. Dh's sister lives abroad. No way could we have looked after him. As it happens he and dh have had a massive and irreparable falling out so he is utterly alone. Ridiculous.

We could do wine where I work but no conservatory.

We do have lovely garden nearby that they are taken to frequently, we are also near the beach. There is a lovely enclosed garden in the home too, that they have free access to.

Some years back I visited my parents and they were being really, really nice to me.
Turned out my aunt had a new bumper sticker: Be nice to your kids; they choose your nursing home!

Dad says they've signed up with Bupa who have a few homes near them.

MammaTJ thanks for the tip on age-appropriateness. Grandma always liked colourful jigsaws, but I can just imagine my mother's reaction to being patronised...

I love that sticker. My DD1 loves it too and keeps pointing it out.

I care for my Mil, she has dementia. I will keep her out of a home for as long as possible but if the time comes when I or my family can no longer cope I will put her in a home and I won't apologise for doing so.

Well done sydlexic, I know I could not do it. Do not feel any guilt when the time comes.