Guest post: Dementia Awareness Week: "My beloved parents struggle on, negotiating a system they don't understand"

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It's Dementia Awareness Week. Have you seen all the memes doing the rounds on Facebook? About how we can fight this, or the huge strides in the treatment? No? I didn't think so. One of the things I've learnt about dementia since it rudely interrupted our lives is that no one wants to even think about it, let alone talk about it.

This is probably because there's never a good ending – nobody survives, nobody gets better. There's no cure for any type of dementia, and there usually isn't even a diagnosis of what strand you've got until you die.

When you think about dementia, what do you think of? Perhaps a white-haired great granny, with memory loss that is almost endearing – she struggles to remember the names of all her grandchildren, but she loves to chat about years gone by and if you put on some Vera Lynn, she'll sing along.

That's not my mum. When she retired from a lifetime of teaching, mum was looking forward to enjoying walks with her friends, volunteering, and rereading her several thousand books. A lifelong bookworm, her shelves are crammed with theology texts, history books, and other less highbrow novels, including all the Terry Pratchett books published before she got ill. She was also looking forward – as she told me repeatedly – to being a grandmother. She was the only granny-wannabe I knew with a stock of children's books hidden away for when the day came, and when I was pregnant she sewed the most beautiful quilt for my son featuring the Very Hungry Caterpillar.

But when my son was 14 months old, we noticed her personality changing. She shouted at her grandson for chewing the zip of his cardigan. For a woman known for her placid nature, this was a warning sign. She began to lose all social inhibitions and said whatever popped into her head, much to the mortification of everyone around her. Then it became apparent that she was having language problems – she couldn't find the words for things, or connect a written word with an object.

Mum was finally referred to the memory clinic after a disastrous admission for spinal surgery resulted in a massive downturn. A CT scan showed shrinkage of her brain, especially in the areas responsible for speech and language. There are only three medications used to treat dementia, and none of them worked for mum. This is hardly surprising because they only work even a tiny bit – and that means slowing down progression, not reversing it – in less than a third of patients.

So that's it. My beloved parents struggle on, negotiating a healthcare system they barely understand, trying to cope day by day. Dad is incredibly frail himself, and has racked up five emergency hospital admissions so far this year. And every bit of help I try to offer is a battle against his stubborn (and entirely justified) wish to cling on to their independence and the home they've shared for nearly 50 years.

This week is my son's ninth birthday. Once there would have been a lovingly chosen card and present and a rendition of Happy Birthday down the phone. Now he'll get a notelet, addressed to the wrong person in spite of dad's best efforts. Mum doesn't know who he is, or who I am. He doesn't remember her before she got ill, but he shows immense patience with her, reading the menu, explaining what things are and never getting annoyed when she grabs from his plate or gets angry for no reason.

Emotional support is hard to come by. My friends don't want to think about their parents going through it. The best it gets is "oh, I don't know what I'd do - I'm so lucky with my parents". Their mums are a similar age. They are having the grandchildren to stay for a week, holidaying in New Zealand, hiking in the Lake District, and not spending their lives on a treadmill of medical crises. The unfairness of it all is sometimes unbearable.

Without the support of Mumsnetters in the ever-wonderful Dementia and Elderly Parents areas, I honestly don't know how I'd cope. To have people who understand what it's like trying to come up with present ideas for a parent who has no interest in anything, and can't be taken out anywhere, or telling your compos mentis parent that their house is a health hazard, or tackling the all too common issue of the sibling who chooses not to care, is a gift. We travel this awful, heartbreaking road together, and every day brings a new way to have our hearts broken. But we're not alone, and that means so much.

Didn't want to read your beautifully written and very powerful and moving post CMOT and then leave it unacknowledged.

I'm glad that you are receiving such great support here on mn. I think dementia is a particularly isolating disease for both the individual and their family, more so than a lot of other chronic life-limiting diseases.

In terms of allocating of resources (what minimal resources there are) where would you like to see money directed?

I'm revising for an exam in dementia and have been made aware again of how resources are channelled into a medicalised approach to treating symptoms or finding a cure, whereas very little money goes towards social approaches to helping people with dementia, and supporting their carers.

Hi Gooseflannel. I'd like to see community support for those with dementia and those who care for them - along the lines of what the Admiral nurses do. The memory clinic were lovely, but once mum had tried the drugs they couldn't keep her on their books as they are so overwhelmed, and it was a 40 minute drive to the main hospital which dad can't take her to as she needs a wheelchair, and so does he in that huge hospital.
The community older peoples mental health refused to see her as there was nothing medical that can be done - again, fair enough.
But it means there is no one that dad can turn to and ask why she was spitting her food all the time, whether he should always call an ambulance when she has a turn (possibly due to a temporal lobe seizure) which happens every couple of months, to direct them to who to ask about a bath lift/ new crutches or to gently talk dad through what might happen next.
Instead we lurch from crisis to crisis - they waited 2 years for an SS assessment which then happened after he was admitted as an emergency and the emergency care team had to look after mum for a few days and raised flags. Or when mum got stuck in the bath for 2 hours as she forgot how to get out, and dad ended up in hospital after trying to get her out and causing his leg to break down, so someone there organised the OT.

And so on. It would also save hugely on A&E and ambulance costs - my parents are in A&E so much I have the numbers on my PC desktop, and they have had an ambulance out 12 times this year. The paramedics know them and phone me direct now to chat.

God. It's all so horribly disjointed with a complete lack of joined up thinking isn't i? Great big holes in the system of care that your poor parents have continually fallen through, with horrible consequences, and only when they hit a crisis then things move forward. And you are left to continually pick up the pieces so it seems.
It's really not good enough, really truly appalling care. I'm so sorry.

And yet it would seem with some money directed into some sort of agency and/or designated care professional who could be easily contacted and could coordinate referrals to other agencies/professionals then life would be so so much easier for your mum and dad, and you too.

I do so hope this government wake up to the dearth of dementia care that is needed so badly right now.

Thank you for your eloquent post cmot. You share so much wisdom on the boards for others coping with this awful illness. As you say, it is still a taboo for many. A dear gp friend of ours found himself in a&e wondering for a millisecond who this mad woman was shouting and swearing and lashing out at staff- and remembering it was his own mother. It is so hard- and as you say never ends well. And it is a dark fear for us too- will that be me?

It's just an awful illness isn't it. I really do feel for you. I'm seeing my second grandparent suffer from it now. I honestly wish my grandad had cancer instead and I say that with full knowledge of cancer :(

Its been 20 years since my grandma, who had dementia, died and its really depressing to read that really nothing has changed with regard to care in this country. I'm shocked to hear that there isn't targetted, localised care in EVERY town and city now. Surely, with dementia affecting so many and with most of those affected living with other elderly people ill-equipped to cope there should be? Meanwhile, our A&Es are full of people who really shouldn't be there - or wouldn't if this kind of support was available locally and 24 hours a day.

I'm really sad that your friends aren't more supportive too CMOT. To turn your anguish into a prayer of thanks for their own good fortune seems particularly cruel and selfish. I wish you better friends in your hour of need

Thank you for sharing this CMOT . You have been a tremendous support to me over the last couple of years as have the others in the Elderly Parents section.

Someone came to do some plans for our house today. I mentioned my Mother has Dementia and he said his Father does too - he is held under a Section as he became violent and stabbed at member of staff at his Care Home with a fork and takes all his clothes off and harasses the female residents. It is this side that a lot of people don't realise or maybe don't want to realise. Also the fact it is a living bereavement, you grieve before they die and often wish they were dead so no longer trapped in a miserable existence that their Pre disease self would hate.

Things that are in place that should help like the Mental Health Act can end up making the situation even more difficult. For example my Mother has a history of stopping her medication. She is one of the lucky few who responds to Galantamine, a drug which halts memory loss for a bit but also needs water tablets for low level heart failure, high blood pressure and to stop her legs flaring with cellulitis.

Her legs flared up last July. Recently now she has been moved to a specialist Dementia Unit they finally healed. She has decided she doesn't have Dementia and doesn't think she needs the meds. Every time she has stopped before she has bitterly regretted it and made herself very ill and it will happen again this time shortly. However her new GP has decided that she has the Capacity to make decisions regarding he medication and therefore the Care Home can not administer them covertly. So every one has to sit around waiting for her to become ill and lose capacity yet again so medication can be resumed.

This time she may not be able to regain her mobility and ability to go to the toilet independently. It has taken from March until the last couple of weeks for that to happen. She will be utterly miserable again, it is an emotional roller coaster.

SPT - I agree that many people never think about challenging behaviour in people with dementia, and I know that getting a suitable care environment for them is really, really hard as they are very few and far between.

Juneau - I'm generally horrified by the lack of joined up thinking on care of the elderly. Sometimes you strike it lucky (kudos to the geratology team dad sees), and sometimes its awful.

I started the elderly parents section, am glad its helping

dementia is a terrible illness and absolutely heartbreaking for families. Resources are limited and often what is provided is a drop in the ocean. private nursing care is a lottery although i believe there are some good places. The whole system is very difficult to navigate, and waiting lists for services are endless.
I do feel sad however that there are no positive reflections. I have worked in dementia care for a long time and we do try to encourage families to take on POA etc so they can make decisions when people lack capacity, and hopefully get services to interact with them more directly. Alzheimers scotland do carers education classes, offer carer support including massage and aromotherapy and organise football reminsence and singing for the brain. Dementia friendly communities are being developed.we have post diagnostic support workers who help to "signpost" families.
I know all this is a drop in the ocean and probably does little to relieve the relentless grind but I dont think all the money goes to medical interventions.We need to change attitudes however and feeling its all negative may not help-we need to feel that things can sometimes be done to make peoples lives a bit more bearable.
sugar- if your mum is in a specialist dementia unit and she thinks she doesnt have deentia it sounds unlikely that she has capacity -can you ask for a second opinion. galantamine is a cognitive enhancer-another drug in the same family is rivastigmine which can be given as a daily patch-would she accept this

Noddsocks - I'm sure that for some people there are positive aspects or experiences. But there hasn't been for my parents.
In their town all that there is on offer is a carers group every other month which isn't dementia specific. They'd need to drive a 40 mile round trip to the nearest group which is way beyond dads capabilities.
Mums type of dementia has lost her language skills, so she doesn't talk very much and especially not to strangers (anyone she hasn't known for 10 years).
She has minimal interest in anything, even music which gave her so much pleasure, and attempts at reminiscence have made her massively angry.

So, I don't want to disparage what you, or the Alzheimers Society say (the theme of this week is doing something new), but my experience has been wholly negative, and I wanted to share that for some people dementia is so much more than many peoples conception of losing your memory.

I'm very grateful to you SSD for getting the section going

Nooddsocks it must be depressing not to get positive feedback. I can see committed professionals trying hard to make a difference and the Memory clinic in particular were very lovely to me. I have quite frankly been to hell and back during the course of my Mother's illness though and my children have suffered terribly.

Re the capacity my Brother is Health and Welfare Attorney but abroad and hasn't seen her for nearly a year. He might get a second opinion, I've no idea what he is planning am standing back for duration of DD's GCSE's as my health started suffering again and been there before so GP told me to step back. I absolutely can"t face it myself and am so weary of it all. She will understand what she is being asked, retain that information, acknowledge that stopping meds will damage her health and that she accepts that is a risk and will communicate this effectively so totally get why GP said she has capacity for decisions regarding meds. Quite soon it will be different and she won't be hold it together and pass capacity test. We've been here about 5 times in the last couple of years.

CMOT-sorry youve had such a difficult time and dementia as a term includes a number of different illnesses, some of which can be more difficult to deal with than others. It is about so much more than memory loss, and if there are even flashes of insight it can be very distressing for the person and is is always distressing for their loved ones. Clearly mumsnet has been a source of support-if you had had an easily accessible local carers group or a worker you could have talked things through with would that have helped or not -just interested to try to work out how services could do it better

As a clinician on an emergency ambulance I spend probably half of each shift dealing with dementia patients in the community. Often the reason we are there is because they've fallen but we can't just pick them up and then go so often spend a couple of hours with a patient trying to find care which doesn't involve a pointless trip to A&E, often to no avail.

The calls are frequently during the night or early morning when there is even less provision for care and it takes up so much of our time leaving other emergency calls unattended.

I don't begrudge my time but do worry about the calls that don't get a timely response because I'm hanging on a phone for ages trying to find someone who can commit to keeping these people safe.

I also feel so sorry for relatives (nearly always women) as they struggle to cope with all the demands on them.

watching this thread with interest. Both parents in their 80s and dad had severe memory loss through a head injury. Similar symptoms and behaviour to dementia. Mum is his primary carer but very proud so can be very difficult to support them.

My dad's funeral was two days ago, he died on May 7th after 6 years of Vascular Dementia. He was an activist, a trade unionist, someone who gave other people a voice. Dementia took his words & his lovely outlook - he became fearful & angry. I gave up work 2 years ago because I was so worn out from juggling & I needed to help him.

I'm glad I did, but I'm angry that there's no information given post diagnosis of what to expect, no Admiral nurses, no actual help because it's an established fact that families will struggle on as long as possible.

just a thought, I sometimes read this website, I found it very useful and comforting

www.alzheimers.org.uk/talkingpoint

My father had Alzeheimer's and he died from it in January. I have noticed a lot of people don't realise that it kills. It shuts down your brain bit by bit until you 'forget' how to walk, talk and eventually, swallow and breath. That said, I would rather my dad had Alzeheimer's than cancer - his death was very peaceful. He died without pain or any apparent discomfort (although of course a lot of sufferers eventually don't understand what they are feeling so I can't know that for sure). My friend's father died at roughly the same time from cancer and his experience, despite excellent medical care was a lot different in terms of his suffering. I honestly think it Alzeheimer's is much worse for the carers and family than it is for the sufferer, certainly in the final stages. My dad wasn't bothered too much by the early symptoms either although I can understand the more independent sufferers would find their failing abilities to be deeply upsetting. I know everybody is different so people react differently.

I agree that the emotional support is hard to come by. Many people offered my mum help but few delivered any apart from the practical. People dictated what to do about that too which I thought was awful considering she had to pay for most of it but you have to put up with. They all know best apparently.

I remember particularly my dad went to a day centre for a few months just after he had been diagnosed. It gave my mum time in the house alone which she craved. The day centre was run by the Alzeheimers Society. My father got chucked out because he was being bullied by 3 other patients who enjoyed winding him up. He would get loud and shouty although not physically aggressive. He was well within the range of normal behaviour for somebody with the condition and he didn't hurt people but for some reason this was deemed to be too disruptive. They weren't prepared to do anything about the 3 who had picked on him though. They were free to track down their next victim. If the Alzeheimer's Society run day centres where even their staff don't understand the condition it isn't surprising nobody else seems able to help. We were deeply disappointed in their attitude. After that, my dad was pretty much house bound. Really they took away his freedom.

I am so sorry for anybody else still struggling with this. I hope you find a way through it all with the minimum of distress to you all.

Mrswarthog - I am sorry for your loss. It must be very raw still.

MrsWarthog and Bertha, I'm so sorry for your losses.

I can see my mums brain shutting down - she rarely talks, finds walking very difficult, forgets how to stand up, has forgotten how to use one arm, swallowing is getting harder and harder, she can't chew, and its like her brain shuts down everything else at time to concentrate on breathing. It took her 90 minutes to eat a very simple meal yesterday as she just kept closing her eyes and slumping like it was all just too much.

NCIS - I deeply appreciate what you, and other emergency ambulance staff do to keep people like my parents safe. Frequently, its been the staff trying repeatedly to get social services to send the emergency carers, the OOH GP, or picking up the pieces after a too early discharge that make a difference.

Nodsock - what would make a difference is having someone who is able to form a long term relationship with my parents, and provide information and support, translate what is going on into terms dad can understand, help them access what is available. The AS outreach worker was great, but was only able to offer 6 months support.
They need consistency, and ideally someone attached to their GP who is able to get alerts when they have seen someone and reach out to them to see what is going on, and take what they need and push wheels into action when a need is seen.

The AS outreach worker was great, but was only able to offer 6 months support.

This is utter insanity! If the Alzheimer's Society isn't supporting patients and their families throughout the illness, not just immediately following diagnosis, what on earth do they do?

I wonder what it would take for each area to have a dedicated Alzheimer's team? It would free up emergency services, take the strain off GP OOH services, and would provide continuity of care for patients and their carers. Wouldn't that be great?

Just adding my sympathy and admiration for anyone experiencing the misery caused by dementia. My grandfather suffered from it and the thought of further members of my family or myself being struck by it fills me with fear. It is a cruel disease but one that cannot be swept under the carpet. With an ever-increasing population living longer it will start to affect the lives of more and more of us.

CMOT, as I get older I get increasingly embarrassed by my ignorance and lack of empathy when I was younger. Before I was a parent, I had no idea of what being a parent was like. I've recently had some health issues which has meant major surgery and am considering writing to a former friend who I failed to support 15 years ago when she was going through the same. This is true in spades with demantia. Part of the reason it is so isolating is that so few people really understand.

Its fine talking about the positives, but the reality, in modern society, is not popping round to see granny and talking about the old times. Its about being stretched beyond exhaustion. Having to give up things you care about, a career, family time including Christmas and holidays, family budget, in order to care for someone who has made a series of decisions which did not take into account what might happen when things went wrong, including living in unsuitable housing, retiring miles away etc. Someone who has capacity to make decisions but does not have the capacity or awareness to understand the impact those decisions have on others. Someone who feels they have the right to complain about any inconvenience, but cannot acknowledge the extent to which others are putting themselves out.

Yes, it is possible to manufacture good moments. I have a lovely photo taken last summer of my mother at the beach in the sunshine eating an icecream and enjoying Punch and Judy. I keep it because it is a small antidote to the many times she has screamed at me, accusing me of stealing, taking over her life, and wishing I had never been born. In the past five years since my father died there has been one occasion where she was lucid enough to worry about me having to drive back to London and so offered me a cup of tea, and another where she acknowledged all I had done. But this is all. Plenty more where she has complained to anyone who will listen (four hours in a hospital waiting for a blood test was a particularly memorable occassion) about me and how dreadful I am.

I'm lucky. Money is not an issue so I have been able to choose suitable accomodation and buy in as much care as my mother will tolerate. But capacity and h&s considerations, plus the fact that caring is not the most rewarding profession, means that I still need to fill gaps. My mother can refuse a carer's prompts to wash or change her clothes. When it becomes obvious that my mother's well-being is threatened, I will insist, using ultimatum that work, though with collateral damage to our already fragile relationship. Its not much fun. A 300 mile round trip simply to have a massive confrontation, in order to keep my mother out of a dementia unit.

My dad bought buy to let property and so I meet a lot of local tradespeople. Just about everyone has a gran or aunt with dementia. Young electricians will talk about the burden on their mother, people in call centres, as I explain why I am phoning on my mother's behalf, will go out of their way to help, even bank managers have told me all about their mother's, indeed the taxi driver yesterday had two relatives with dementia.

But lots of people do not understand and as organisations march ever onwards to save costs by introducing self-service and internet transactions it becomes harder and our elderly become more vulnerable.

I would like:

1. something done about the endless charity mailings, unwanted phone calls and the selling on of "sucker lists". My mother ended up with 12 sets of protection on her Sky TV box alone, and I filled a whole skip with paper. (Admittedly a good portion was cruise catalogues, but a number of well known charities, along with people like Vita health, should hang their heads in shame.)

1. For there to be some sort of standard or mark for companies who can show they are dementia friendly or aware. I will have dealt with as many as 100 banks, building societies, utility companies, pension companies, tax authorities, local authories etc. I hate the Barclays digital eagles adverts. Once you know it is easy to spot elderly people who struggle with cash machines and super market self-service, dont use the internet and who need counter service, and no amount of slick advertising will hide the reality that it is becoming harder for old people, who cannot adapt to new technology, to retain their independence. Its is a lucky day when you come across someone in a bank or similar who knows how the process works. And no chance if you get an overseas call centre, reading off a script. Even when the POA is registered it is often difficult for a call centre to locate the records (only last week and after almost an hour on the phone the Co-op agreed that yes I had submitted the paperwork a year before, but they had not processed it) or correspondence is still sent to my mother. (The NHS is particuarly guilty here.)

1. A clasification somewhere between having capacity and not having capacity. Perhaps called "vulnerability" where it would be acknowledge that though the person is capable of expressing a consistent and reasoned opinion this opinion is limited by their lack of orientation. So they have a view but not an "informed" view. The current assumption is that capacity is a binary thing. It isn't. My mother is perfectly capable of deciding what she wants for lunch, or which carers she likes, but for a long time has not been able to manage her financial affairs. And for a time has not be capable of driving. A "vulnerable" flag would allow a half way house which would allow a third party to confirm that a major transaction or decision was reasonable and in a person's long term interests. So buying a flat in sheltered housing was a reasonable decision (and I am grateful to the lawyer who on receiving evidence of my mother's finances did not press for a capacity confirmation) but transferring money to Nigeria, say, was not. This would then require organisations to think about how vulnerable people are treated. One example was these wretched Sky protection direct debits where the only way to stop them was to close the bank account. Given the new pension freedoms this has to be more important than ever. This could also apply to on-going medical treatment, described by SPT above, where someone drifts in and out of capacity.

A long post but our elderly, and their carers, are being let down.

Needsmoresleep, you have nailed it in one post as far as I am concerned.

Definitely a need for a vulnerable classification. My mum has alzheimers and vascular dementia and is in her mid 80s. So far, even though she can't take any medication for it as she lives alone, is diabetic and has had falls in the past so the medication is dangerous for her, she is holding on (ish).

She has lost the ability to write, her signature is getting harder for her to do. I change her bed each week and give her the pillows to change. Two pillows take her the same time as it takes me to change the rest of the bed - but she needs to keep the skill going so she struggles on. In the past she'd have stripped the bed and remade it before the kettle had boiled!

She can't understand her bills or bank statements now. We took out POA as soon as she was diagnosed but haven't invoked it as we also set up direct debits as soon as the diagnosis came through. She doesn't go out much on her own and prefers one of us with her to use the bank so, so far, she is OK with regards to losing money.

But she can't understand about her various bits of medication, sometimes forgets to take it, sometimes not. So some days she needs more help than others.

Some days she'll clean her flat, other days she thinks she's cleaned it but the toilet is dirty where she's 'missed', the sink hasn't been washed down from greasy pans and the hob will have something burnt on. She's left the hob on before - but only a couple of times. So she's vulnerable but capable as you said Needsmoresleep.

The problem is you don't get help for 'vulnerable'. Mum can't get help just because she's missed a few doses of her heart medication - she doesn't do it regularly enough. She can't get help with cooking as she's only forgotten her dinner a couple of times or left the cooker on a few times. But, of course, the family's terror is that, in order to qualify for help she has to be unable to do these things more regularly. But to be more regularly vulnerable means she is in more danger.

So we help her. It's what families do isn't it? Of course, that means that the regular vulnerability we need her to display to get help is repressed - we're thinking and doing for her. So less help, more stress for the family as we try to support her more frequently.

I have a primary school age DS and am mum's main carer. Last summer mum had appointments each week during the school holidays. DS didn't complain but I know how bored that little boy was sitting in the GP or hospital for yet another appointment - which inevitably runs late so that's his day gone. This year I have moved the appointments to September. DS needs a childhood. Mum's had hers. It sounds heartless I know but I am tired to the bones of carrying mum. Families are expected to step in and do far too much in my opinion. I don't know the last time I actually sat and had a cuppa and a chat with my mum. When I am there I am usually doing medication, talking to the district nursing team about her diabetes, trying to sort out her bills, cleaning her loo or doing other housework - and it will get worse before I get help.

And that's the point. It's not mum who really needs the help. It's me. I need someone to help her so I can enjoy the, probably, short amount of time I have 'my' mum left. I know the dementia is eating her up and, by the time social services deem her in need of their help my time with her will be over. I long for the days when we would sit eating a doughnut and drinking a cup of tea whilst she told me about her childhood, how she met dad or some gossip about the neighbours. Now I rush in, do what I can for her and rush off to pick up my son from school. Social services don't care - I am saving them a shed load of cash so why would they?

Mum's housing scheme is being renovated next year and she is having to move out. The only scheme in our town is now called extra care. To get in she needs to prove she needs extra care - she does but how does she prove it when I and the rest of her family 'cover up' the care gaps? So I have told the council if she doesn't get there I can't cover any more and social services will have to step in more frequently. Doing a 40 minute drive to the next housing scheme she is likely to be in will mean I can't cover appointments like I can now (I am 15 minutes walk from her at present). I've still been told it is touch and go whether she gets into the local scheme. If a dementia patient can't get in - someone who will never get better - I honestly don't know what you have to have wrong.

I am currently under the doctor for stomach problems. He and I have come to the conclusion that it is stress related and, bless him, he tries very hard to support me which is great. He's treated me for gallstones, I have been under a physio for shoulder problems (holding myself too tense) and have had various aches and pains since mum's diagnosis. So, as I say, it actually isn't the dementia patient that needs the help, it's the carer. We need to see our parents/spouses/partners supported in a structured, on going way. Then we can relax, we can help as we know them but to ask us to take on everything is just too much sometimes.

Marswarthog and Bertha I'm very sorry for your loss.

That is an excellent post by NMS and I very much like the idea of a classification between capacity and not having capacity. I do understand the need for Capacity decisions to be assessed for each issue, as NMS pointed put about what her Mother can and can't do.

But there should be a provision that if someone is for example subject to a Deprivation of Liberty Order then it can be assumed that they do not have capacity to make decisions about medicine taking so don't end up in position as with my Mother where GP said she could make her own decisions.

I know we could have got a second opinion but it would have been yet another hoop to jump through. She has decided to take them again apparently today.