So, so tired of everything being so hard - is it the same for everyone?

[24fan]

I am so dreadfully, dreadfully beyond tired at having to fight seemingly everyone for even the most basic of necessities, and the interference in our family life that we have to endure because of my father’s condition. Is this the same for everyone? How can things be so, so difficult, always?

Carers Break.
We approached Social Services with regard to a break given that my mother and I (primarily me) have been looking after my father with only one week’s respite since he became ill in 2007. Unusually, I know, our plan was to go to the Isle of Wight with my mother and I staying in a hotel and my father sleeping in a nursing home, having his breakfast (and poss. evening meal depending on the time they eat) and morning ablutions there and then us picking him up so we could all spend the together day so that we could have a family holiday but with me being able to have the utter luxury of having unbroken sleep for the whole week and not having to cook, or do his endless laundry (he is incontinent) which would be a holiday in itself!

We have found a hotel and a nursing home and were just waiting for the funds to be officially released before we booked everything and, of course, time is getting on if we want to go before the autumn. My father’s Care Manager came back from her week’s holiday abroad in the sun with her family and seemingly her first job was to ruin our plans for our holiday – thank you! It seems that although there is the money for Mummy and I, our County Council have a limit as to how much they will pay for a respite bed for Daddy and the I-O-W nursing home fees exceed that so they won't pay though they have said he can stay at a nursing home where we live - how very good of them! How is that anything like any kind of a family holiday for him? He would be as badly behaved and aggressive as he is in hospital when he is out of his own home, his routine, and unable to see me, and we would get back to find that we weren't considered able to cope with him any more and that they were keeping him in the nursing home. Anyway, that won't happen as we won't be going - it's a family holiday, with Social Services paying for all of it or we aren't going at all, there simply isn't any other way. How could we enjoy even a minute of it knowing how desperately unhappy and upset he would be by it all if we left him, and what little of him there would be left when we got back?

Daddy's Care Manager - so blinkin' ill educated that she calls it the Ilse of White - her spelling, and sometimes not even with capital letters, I kid you not, even though she actually lives nearby and must see road signs daily! – and it is this person who is actually saying that she thinks we wouldn't get a proper break if we take him with us. How dare she even begin to presume to tell me what I will do with my life and my holiday - I could scream - and it is such a turnaround when everything so far has been about Daddy and not a care for us like the five months we were left without even one day of respite when he first came back home to live with us (after eight months in a nursing home) and yet now he doesn't matter any more than a dog to be put in a kennel or a piece of left luggage to be just dumped without any thought in a strange place, with strange people, totally bewildered and unable to understand and then left there for a week.

We have even had to scale down the time he spends at the Alzheimer's Day Centre as he starts to get anxious at lunchtime and wants to come home to see me. Being with me is all he wants in the world so how cruel would just leaving him be? So, no holiday, and I was so looking forward to it - I don't mind any of my time with him, I just need some proper sleep and the laundry break would be extra bliss but I don't need a break from him not that anyone bothers to ask me something as basic as what I want, and it would just be awful for me; we would be lucky if we even got there before I would be wanting to come straight home again, and it is, after all, my choice not theirs.

Maybe, if it is absolutely necessary, we could pay the difference between what the County Council will pay and what the nursing home needs. I was careful when I chose one because of the safety issues such as bed rails etc. so I can't change which home we put him in so there might not be another way than to pay. I have a very small amount of savings – very small, given the Government pays me the princely sum of 57p an hour for my twenty-four hour a day care of my father – which I could use but it is so wrong that we can't get something as basic a need as this.

It’s not like many people will have asked for such an arrangement, we haven’t had more than a week’s break in five years, and, realistically, this will probably be his last holiday with us as, given the progress of the disease, I can’t see him being able to go away like this next year so why can’t they show some basic decency and let us have the money? This is the same County Council who wasted £250 million of taxpayers money, in one financial year, on respite care beds that were never used but can’t find what £300 or £400 for an sick old man to be with his family?

Aricept and Memantine.
The latest scientific research (published in “The New England Journal of Medicine” in March, 2012) suggests that Aricept should be continued for as long as possible with Memantine being added to see if it works or not, but definitely keeping the Aricept. NICE guidelines are that once the patient reaches the severe stages, Memantine should be given instead and Aricept withdrawn. I truly don’t see why, just because NICE haven’t bothered to catch up with the latest research (if I’ve read it then they can!), that my father should not have the drugs he needs but, having written to my father’s psychiatrist to ask for him to be able to keep the Aricept and have Memantine added for maybe a six month trial period to see if it helped him, as, obviously, his needs are paramount, the psychiatrist, having never even met my father, decided that the NICE guidelines have to be followed to the letter and he will have the Aricept stopped once he starts the Memantine, no matter how wrong that is.

Having spoken to our G.P. about the possibility of having one or the other drug on a private prescription, all he was concerned about was what how prescribing anything privately would impact on him – hello, what about the patient? – so my father can have the Aricept for as long as I can convince the Memory Team that he isn’t in the severe range (which he probably already is) and, in the meantime, he can’t have the Memantine which might help him, even if we are willing to pay for whatever is necessary; we can’t do more than that – what more do these people want?

Incontinence pads.
Daddy needs more absorbent pads. The daytime ones take 800 ml which are fine because he still goes to the loo in the day, not that he does much, but under his own steam and he will say when he needs to go but they are way too light for night use. He seems to do most of his wee-ing at about 5 a.m. and it's a lot - we now have three Kylie's on the bed; a big one (with wings) and two (without) on the sides - the bed is wet every night and so is he which must be very upsetting for him; to wake up in such a mess when he has no idea why. I have been experimenting with three different much more absorbent types that each hold 2200 ml which are, obviously, much better though he still wets the bed but it is much less to deal with. Given that the pads are £100+ a box, I thought I would ask the Continence Service if they had an equivalent or would pay for the ones we decided on. It's such a simple thing you would think, wouldn't you? You ring up and tell them which ones you need and they will or they won't pay for them, or they have something similar which you can have - oh no!

Firstly, rather than ringing the Continence people – the experts in that field - you have to ring the District Nurse who then wants to come to do an assessment, why when we had the assessment years ago when we first needed pads? They then ring the Continence people for advice and now a Continence Nurse Specialist AND the District Nurse have to come and see Daddy. Why? 'Seeing' him achieves nothing - he can't tell them anything, he can't change the time he pees, he isn't going to do it in front of them so what purpose does it serve? Why does the District Nurse have to come too - as they obviously are not the experts, they serve even less purpose especially if the Continence Nurse is coming anyway. Two highly paid professionals insisting on seeing one old man who has no knowledge of anything they are going to talk about. What do they think - that he doesn't really exist or he doesn't need pads and we have a thriving black market activity selling the pads they are giving us on eBay? It's bizarre and I hate it, hate, hate, hate, being shoved into doing ridiculous nonsensical things just to be able to get something really simple done. I don't want a lecture about taking him to the toilet every half hour - pointless - restricting his fluid - not going to because of UTI's - etc., all I want are the pads for him and I shouldn't have to jump through hoops or have these people insisting on coming to our house, mob handed, in order to get them. When I asked the Continence Nurse why she had to see him to make a report, she said "oh well, I haven't seen him for a couple of years" - so blinkin' what, and the last time she was here, she was so late for her appointment that he was having lunch and she commented on what a nice filling lunch it looked like as I took it through to him - not her place to say anything about that but I bet it got put in her report somewhere – poky nosed gits!

I truly don't mind any aspect of the actual looking after and caring for Daddy; I wouldn’t have it any other way, but what is wearing me out and upsetting me and causing me sleepless nights are all these people pushing in, checking up on us, causing problem after problem when all we want is just to be left alone to live our family life with some peace and tranquillity not the stress of having to deal with all these people, their issues and their endless demands on our time and resources.

Why is everything about this whole issue, so, so hard?

[littlegem]

Hello,

Soooooo TOTALLY agree with you.
It's invasive, intrusive and humiliating.
Even more so when you KNOW all the various agencies are talking about the situation behind your back; making decisions about your life behind your back that affect your quality of life not to mention your finances.
I loathe it. Stresses me out big time. It's making me paranoid about telling them anything
We are, it seems, at the mercy of jobsworths, a very uncomfortable place to be!!!!!!!!!

[jeany123]

Does anyone actually get any free care or holidays ? We always have to pay for ours and we go through all of the assessments as well , the questions are repetitive and intrusive and seem to get nowhere and the forms are never ending 'it takes so long for anything to be done and they take ages to phone back,I know about getting your hopes up and having them dashed in a minute ,it seems a heartless task doesn't it ,I hope you get the help that it is obvious to us on here that you need but not to the SS it seems ,
Best wishes and good luck

Jeany x

[Karjo]

I agree as well .the whole system and its paperwork uses precious time that we could use looking after our loved ones. Its relentless -clear one hurdle and another appears.
i am spending hours -in fact days begging/telephoning and generally humiliating myself because I end up in tears just trying to get my mum out of a psychiatric unit (ready for discharge now for 2 months)
This is time I could spend visiting my mum and taking her out in preparation but oh no she just has to stay loneley or I end up in a frazzle trying to cope.
I may try reverse psychology with them all and say I have changed my mind she can stay there.Tell the social worker to go on another holiday, look after her other patients who are much more of a priority, maybe even go off sick with the stress i have caused her.tell them they are doing such a wonderful job i will keep away and i will convince mum to stop trying to pick the locks to escape, because she is now there for ever and ever and she will love it.
I bet that would make them move -its like they are all so understanding and nice, but just always want to do the opposite or are somehow powerless to help.
I wouldnt mind but with my mums fiasco the law and dept of health guidelines are on my side (even needed to hire a lawyer - more time and expense to explain this to them)

[Izzy]

Good morning. I'm so sorry about the situation you find yourself in. In sounds so unreasonable. I do hope you get your break together. You have planned it so well so that you would all benefit. I hope you get the funding.

I'm in the same position as you are regarding the Memantine. I want my husband to stay on Exelon and also get the Ebixa (Memantine) but the consultant says she can't recommend this. I was just beginning to think about a private prescription for one.

[geordie]

just wanted to let you know- my experiences are similar - all round services seem to conspire to make a stressful experience more stressful and in the end it is me who has to product search, and then suggest based on files of pertinent evidence. Your comment about wanting respite from the surrounding chores and not your father - SO resonates with me. The idea that I/carers must wish to be seperated from the person receiving care as the only means of relieving them is SO frustrating and seems intent on fracturing and stability -the one size fits all respite approach needs a good rethink! Hope you AND your parent can get to enjoy a FAMILY holiday.

[piedwarbler]

Hi 24fan
I am so sorry you are having such difficulty getting basic support for your dad. I can empathise with so much of what you say. The beauracracy of the incontinence pad. It's inhumane. And the spending on professional time that seems so unnecessary.
At the bottom of it all the system has been set up because society does care about trying to help you care for your dad; it just doesn't feel like it! I used to struggle to believe the system cared about my mum, and I still do whenever I am chasing appointments, which is basically all the time!
Have you thought about cutting and pasting that post and sending it to the PCT, your MP and perhaps Mr Lansley? It might make you feel a bit better, and it might just offer some feedback on what life is really like to the people who make the decisions.
You really sum up all the frustrations of care very well, and you express the problems eloquently!
You could also remember this quote from the philosopher Marcus Aurelius:- when you wake up in the morning, tell yourself: The people I deal with today will be meddling, ungrateful, arrogant, dishonest, jealous and surly. They are like this because they can't tell good from evil.
Marcus Aurelius was Emperor of Rome from AD 161 to 180, but maybe some things haven't changed much !

[bunnies]

I so agree with you, and you have taken the trouble to describe the nonsense at the heart of the system that we all experience when looking after someone with a dementia. I feel like shaking some of these people, asking them to wake up to what is really going on - I can understand that they have a definition of 'respite' which is the carer away from the cared person, but why can't people in social care understand that people with dementia do not fit into their neat little boxes?

It was probably the continence issues which most frequently drove me to tears. Exactly as you describe, the same pointless procedures. I felt helpless in trying to put anything right. In the earlier stages when my aunt was living on her own I arranged for the continence service to visit her and we eventually sorted out a pad they would supply. A year later when she had got much worse and had problems managing her own personal hygiene, I discovered that they hadn't delivered any pads for six months because they had sent her a letter with a code asking her to ring and confirm she still needed the pads (!). Not very sensible for someone with dementia. Of course she never rang, and so she had had not pads for 6 months, and we didn't know.

I think you have described how it feels to be on the receiving end of all this very well. It doesn't help you deal with the problems though, I'm sorry to say.

[mby]

My experience so far is that yes everything is more difficult than it needs to be I am having the same issue with the pads, although I raised it with District nurse first who couldn't even tell me the daily pad allowance. Phoned continence team, waited for call back and told need to see district nurses first who will then refer to continence team- what a total waste of time. Social services tell me to speak to GP who then says have you contacted social services. Seem to spend my whole time going around in circles which is the last thing I need when I am exhausted and just want things done If anyone lives in local authority any different to this, let me know which one because I would love to live there!!

[jeany123]

My experience so far is that yes everything is more difficult than it needs to be I am having the same issue with the pads, although I raised it with District nurse first who couldn't even tell me the daily pad allowance. Phoned continence team, waited for call back and told need to see district nurses first who will then refer to continence team- what a total waste of time. Social services tell me to speak to GP who then says have you contacted social services. Seem to spend my whole time going around in circles which is the last thing I need when I am exhausted and just want things done If anyone lives in local authority any different to this, let me know which one because I would love to live there!!

I think it's the same everywhere they must waste loads of time and money passing us around and then when you think you have got the person you want they go sick, go on holiday or are busy and will phone back but rarely do,our precious time is wasted as well ,


Jeany x

[mby]

Jeany - I do get the feeling that as we are the carers they expect us to have the time to deal with chasing people up or wait hours for a phone call, what actually happens is the small amount of free time we have is spent trying to sort things out.

Mind you at least I know not to take it personally now as it's obviously happening to all of us. Thought at first I was going about it all wrong

Tempted to try Karjos idea of reverse pyschology because it does feel like if I say yes officials say no.

[donque]

Yes yes yes
jobs worth looking after their pensions ticking boxes
no real peole care my experience is you are a number you have dementia and you will be treated like the disease not the person you really are all dementia cases are different and only the relatives/carers know the persons real needs

My mother recently went into a home after a long struggle and after being told it was best for her of course I know its not but had no choice I loked after her 3 days a week and had a friend who was live in carer for 4 days a week but she wanted to leave so I had no alternative - but hey if you are rich you can buy choices
and get a live in carer day and night then you can enjoy being a relative instead of doing all the stuff your loved ones hate you doing but wants no one else to do

My mum only wants to be with me too she lives to breath my air andmy sisters without us with her she has no will to live - her new home is brand new state of the art she doe snot care she says its not cosy its too spread out and she has no one to talk to as she is in the best condition of all the others and they cannot have a conversation with her she is more lonely thna befor only upside is I get a full nights sleep and know during the day there are people around her


I have had a 3 year battle with all the services none know how to move quickly most work 3 days a week and you do not get answers to anything even when you press the right buttons if they cannot answer they will avoid

you can write to me at info at (Moderator note: email address removed as per our T & Cs)if that helps

I have at least 8 complaint soutstandiong and the eventual stock reply is go to the governement ombudsmen who may also take 4 years to resolve a complaint and they have no teeth and the perpetrator you are complianing about will have moved on got promoted etc etc no one is accountable tried my MP tried the nursing and midwifery council tried the general social workers council

Nightmare - due to the drugs my mum was on and her severe and chronic pain that was never dealt with a carer entered her house while my mum was in bed she thought she was being burgled and acted accordingly as any normal person would social services refused to attend so did the mental health team who advised the carer to call the police - who never called me and lured my mum outside her house so they could legally section her under 136 its been a nightmare you have no rights and iof pyu try to exercise them they all close ranks

Have you had a csarers assessment?
they have money available to help you

everything is a post code lottery - forget governemtn guidlines they onky follow them if they wish to if you quote them they will say ah yes but they are only guidlines and everyone is off the hook
I know your misery

it took me months and months to find out and get direct payment so I could pay a carer - don't let anyone tell you its cheaper to keep someone at home its not its cheaper to put them in a home because they take all your pensions and allowances etc and then have to do no work - with direct payments they cannot touch your pension or personal allowances there may be a small contribution of £60 odd a week but ther eis a max they can take my mother got over £400 a week for direct payment to organise a carer at hime and she still had £108 a week for drop in carers
it can be done
hope this helps if the care plan and services is not adequate you have to fight for what you need hound your social worker day and night if you have to
also look up dutie of the cpn they are supposed to do more than they do
and insist on a care coordinator they will try and push this onto you
care coordinater should liasie between mental and physical health issies mine did not neither did the CPN who is supposed to liaise with the doctor they will all pass the buck no care coordination as for the drugs sometimes they make the patients worse but no one listens they will just say thats the disease but no one knows your parent like you do if they sneeze we know about it - no one keeps track of them like you do and they will push the guilt trip on you and tell you how much better they will be in a home only you will know when the right time for that is keep them at home in familiar surroundings as long as possible once they leave this nothing is familair any more and they have none of the things they care about around them except of course photos the glossy brochure is one thing the reality is another and when they are in the home its impossible to control anythuing they want absolute power and of you complain about naything they cliose ranks again and you get branded as a trouble maker - we are the ones with our parents best interest at heart we know what makes them happy and miserabel they do not have a clue - of course you might get lucky but its a gamble
others will say its best for them but it also relieves their conciousns because then relatives can pretend everything is ok we know different

[donque]

We are all here with the same complaints but no one listens or does anything
thats how they keep most of us out of their hair send us to forums - its a full time job as others said just keeping up with them chasing them finding out and getting your rights if you are lucky
Its disgusting how they expect our loved ones to end their days where is the humanity

My mother was in hospital for severe and chronic prolonged back pain so bad she said she wated to die often and sobbed daily - this was after a fall she had unattended in a so called safe 24/7 unit - where they had been told many times by me and others not to leave patients alone together in communal areas ie patient lounge because it was not safe - the consultant at the hospital said my mother was too demented to know whether she was in pain or not......
yes I complained nothing has been done to date that was 9 months ago they said there was no complaint ot answer and suggested I go to the ombudsman if I was not happy with their answer the same doctor said my mum was not passing out from her pain but falling asleep and he did not believe what we told him because he had not seen her pass out in spite of the fact I reported it to staff to be put on her notes when it happened twice in the x ray department and they did nothing
I also think they take men more seriously we women are described as over protective and fussy my mother social worker said it was time I cut the ambilca cord !! this apparently is acceptable
I have been waiting for counselling for the emotional stress for over 2 years all I get is letters saying it will get desalt with or the department has reorganised again - if they keep reorganising departments it seesm no one has to do any actual work lol

How do we all keep sane because we have to
we know if we drop the spinning plates of which there are many no one will pick them up

[24fan]

Thank you all for bothering to write back with your comments and experiences.

I don't know which is the worst; thinking we have just been unlucky with our situation or now *knowing* that so many people are in exactly the same position (give or take) - it's heartbreaking to think we are all trying so hard to give our loved ones a half decent life under the circumstances, and that we are all having to battle so hard to achieve so little.

So ... onward, as that is all it seems we can do!

[24fan]

Well, the Continence Nurse came round today, with not one, but TWO District Nurses - I wonder how much that little bit of nonsense cost in wages and petrol costs - and did we get a result - what do you think?

The NHS/Continence Service are tied into a five year contract with one particular supplier and they don't do anything that is suitable for our needs. I asked in the very first place, when I first rang the Continence Service to ask about the bigger capacity pull-ups and fully explained our needs and requirements, and they didn't have anything as large as the ones we'd paid for which was why they gave me the impression they were coming; to write the report they spoke of, which made me think there were alternatives but the reality is that THREE highly paid, highly qualified professionals came to our house FULLY KNOWING THEY ACTUALLY COULDN'T HELP US IN ANY WAY BEFORE THEY CAME! I give up, I would complain to the PCT if I thought it would do any good - so no, I won't bother!

The only thing they could offer were pads that hold 940 ml when we are already using 2200 ml pads and the bed is still wet - how on earth would anyone see that as any kind of a better option?

On a brighter note, I sent a formal letter stating 'we need answers to our questions by close of business (yesterday) or we go to your Manager' to Daddy's Care Manager given the e-mails she just ignores or only chooses to answer one question when she is chased, and the dozy creature didn't take me seriously so all e-mails were forwarded to her manager today, by which time she'd managed to get round to answering one of the four questions - we need a new loo, the OT came three months ago, we had various equipment to try (unsuccesfully), the OT left so now she wants to bring another one round to do exactly the same assessment!

The Continence Nurse is going to write to them to confirm that the new loo is needed so that is one thing, and the Care Manager will now, hopefully, get the kick up the a**e she so rightly needs - her Manager and I had a chat today and he had no idea of any of the issues! So, maybe, now we will get at least some of the stuff we need or need to get sorted out, if not the pads and at over £100 a box, I'm not sure how we are going to manage but hey.