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I PROMISED my father I wouldn't put Mum in a care home on his death bed. Now you have to understand I loved and will always love my Dad beyond all else (save my children), so that promise means everything to me. However it is coming to the point that I don't feel able to continue. Mum would fall almost every time she stands if I wasn't there to support her. She wont shower because it hurts her.. She is totally bladder incontinent and I can deal with all of that. She is miserable to me when we are alone but not if others are there (usually) and I can tolerate that for the most part. What I am increasingly finding impossible is the lack of a proper sleep... Because Mum calls me at least 4 times every night throughout the night sometimes as much as 14 times I am running permanently on empty ...at least it feels that way. Do I know she should be in care? Oh yes. Can I resolve that in my head? No I can't and I am sat here crying about it so please be positive because I can't take any moire negativity

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PD, you go girl!!

I'm really sorry you had to deal with such an inadequate service provider!

I just want to say that my husband's case worker was extremely respectful, appeared to have our interests in mind, and even suggested devices that I hadn't thought of and then saw that we got them.

I'm not saying that all my dealings with "helpers" and bureaucrats were peaches and cream. I certainly encountered a lot of folks who were inadequate at their jobs.
But there really are some highly effective people in these roles. I hope the next one you deal with is more like Coy's case manager.

Meanwhile, vent away!
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Well today I have had the mental health assessor come to see us. We are going to have a crisis meeting with the social workers because she recognises MY deterioration. Yeah let's not hold our breath here.

Words from social worker said in a very flat tone- I have been allocated to your mental health worker with regard to your case dear. That smacks of - I don't want to be there and I want you to know it. So bearing in mind this is a crisis meeting it will be immediate right? Well it will be in late Feb at the earliest... her reasoning? 'I am busy you know'.......I am sorry I am not cut out for dealing with imbeciles.

Yes "dear" I understand entirely... the longer you leave it the more likely it is that Mum will die and the less you will have to fund.

Now I KNOW how offensive the term "dear" is to professionals and every time she spoke to me I used the term "dear".

So eventually she realised I was a very old person and had to be handled nicely (HMMMM!!!!)

"Well my lovely" she said "if we come out to assess you we can help you get everything your Mum needs."

Im sorry people I bit the hand that was trying to be 'nice'

And that's just it isn't it? You don't give one flying %^&$ about what it is doing to me, you dont give a %^&* regarding helping me learn what I need to do to get training to keep me safe.

Let me tell you this lady I will have someone here taking minutes of this meeting and the action points will have dates written by them so you had better come prepared and I don't mean with a set of tick boxes that you need to tick off. My mother and I deserve better and you WILL be called upon to provide it and if you can't do that then I suggest you send someone who can because I have waited a year for this and I am done playing nice "DEAR"

I think she was surprised
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And she is one of the 'lucky' ones - I have to say I am not sure who is the luckiest. Is it the poor who cant afford the aid so they die before it gets to be a problem for their families who then grieve for the early loss or for the ones who get the aid and live longer and their families grieve for the mother/father who is alive but not in any form they recognise and who certainly doesnt recognise them.

I think it is a very very personal set of values that we face and the perspectives of each family vary in as much as our individual backgrounds vary and our resultant thinking (or in my case totally skewed thinking).

What really annoys me is that I was a person who managed an annual budget that brought in 3 million every year to the company I worked for. I could write books / reports / produce and manage time led budgets / train staff and now all those talents are being wasted so I can save the government money and keep her in the other room alive and well looked after.

But the time will come when I will have my say and it wont me a whine for me me me it will be a demand for those who are living the nightmare every day, for whatever reason they do so so, and I will be heard....one way or another.
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Jude, I hear you! In a previous era, my mom would have died of the breast cancer she develped at 65, of the pleural effusion at 88, of the stroke she had at 90, of the broken hip that followed hard on, of sepsis at 91.

But instead, aphasic, demented and sometimes terribly agitated, she lives on in a good nursing facility. They tell me how 'cute' she is. I want to kill them all.

This is not my mother. This is a shell of a human being who is not unhappy and not in pain, but only because her 3 children and our spouses, her grandchildren and her great-grandchildren give up large swaths of their/our time and psychic resources to keeping her content. Thank G-d, her monetary resources have so far held out, so yhat we are not taxing public resources. But ultimately, this is not the way my mom told me she wanted to live. Thanks for letting me vent.
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First of all, yes - promises do get made and we hope we can keep them. However, sometimes circumstances totally change and no one can see that back then. If you have a family member who is creating havoc in YOUR life, either through abuse to you, ridiculous demands, no memory of anything, difficulty in caring for them, and generally disrupting your life, then you must decide you are going to do something. It is, I agree, if the sick person was kind and loving in a prior life than if that person was always difficult and abusive. The fact is that NOW is NOW. YOU must decide to take care of YOURSELF first and you owe that to yourself. Do all that you can but if their actions are causing you emotional, physical and mental harm - then you have no choice but to put them somewhere safe. You can visit, you can oversee, you can love them - but you need to think of YOU first. They lived their life and now it is your turn. Do NOT feel guilty or it will destroy you and those you love that are around you.
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I plan to move somewhere sunny and just rest - then when I am recharged - if I ever get recharged then I would like to work with political lobbyists to promote the enormous difficulties that carers face when caring for OLDER people. So much is out there for carers of children but zip for the elder carers who are often elderly themselves.

Each day I find myself getting angrier at a suite of governments (for US and UK are not alone in this) who pay lip service to caring but haven't the vaguest idea of how to back it up. This is a problem that is escalating faster than most diseases. 

If the pharmaceutical companies and the governments are going to plough seemingly endless money into research for people to live longer then they need to bloody think about putting in place an infrastructure that will support the result. 

Even if my Mum didn't have dementia her frame is now weak, her bones are brittle, she is incontinent and all of those would probably still be present.

WAKE up government because if you dont there will be real trouble ahead. Gets off soap  box
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Jude - what are you going to do with your life when your mother passes? You are using every ounce of your physical, emotional, and mental energies centered on her. In my view you need to focus some of that on yourself and taking care of you.
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There's some method in her madness, then! Gore Vidal was wonderfully catty about poor old Ike - "he read out his speeches with a genuine sense of revelation" - so you can sort of see where she draws the parallel.

My mother claimed that she didn't know the name of the Prime Minister because he was so negligible. I never did find out what David Cameron had done to offend her.

Your poor mother. What it must be like to be lost in her head. Though whether it's worse than having to watch is a moot point. Take care of you too.
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Aha all is becoming clear we are back in about 1950 something probably about 1957. Mum had a baby then that died and he died around this time of year, his birthday would have been about 7 days ago. She has kept saying today that she couldn't understand why Dwight D wasn't wearing uniform - so she is equating Trump with Dwight D for sure. And that would sort of explain the meat and the jelly because granddad used to have a food store and they made their own pork pies and at Christmas cooked crabs and lobsters in their huuuuuge kitchen. Granddad used to carve the bacon by hand with a knife - no electric or hand machine and I can remember Mum packing sugar into paper cones for sale. Now that would explain the meat and the jelly would have been heated to fill the pies with. And the fridge although we didn't have one at home until about 1960. Right so now I know where she is perhaps I can make some sense of tomorrow - I will fish out some old programmes and see if they make sense to her. Perhaps some newsreels of the end of war and the celebrations. If nothing else it might be a talking point.
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CM I am going to look into that MHA there appears to be places up for sale there but nothing current so keeping my on and emailed them already and yes it is 2.33 but apparently tonight I havent cooked the jelly.....aaaargh
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The American system makes me go boss-eyed. It isn't even the money aspect of it - you pay insane costs, we pay insane taxes: you pays your money and you takes your choice - it's the sheer volume of admin you all have to do, routinely. It's bad enough having to be a canny consumer when it comes to utilities, with its suddenly having become the done thing to "shop around" and "negotiate" - for heaven's sake, we're supposed to haggle about electricity bills? This is a sensible use of time? But the idea of finding your way through the healthcare maze, when you're having to compare not only insurers but treatment options too - sheeeesh. I feel sorry enough for myself having to work out my tax return.

PD, you have MHA homes near you. They do not medicate for compliance, nor for sleep patterns, I promise you. They are little Methodist saints, bless their cotton socks, and they know their business.

Also, with perfect understanding comes forgiveness. And if your dad is watching, he knows that the tinkering in the garage option is no longer available. He loved your mother, and he loved you too. Trust him to see the reality.

But it doesn't matter. Only you can judge where the end of your tether is. Stop before you get there, promise?
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vstefans, the insurance industry and pharmaceuticals are starting to terrorize people. I get letters from bcbs instructing me to do certain things. They are getting pretty bossy. I know doctors have been dealing with this a long time from the insurance companies. I wish we had stayed like it was before the 1980s. Medications weren't covered by insurance for most, so the cost was reasonable. People had to pay for office visits and it cost about the same as the later co-pay and doctors were actually able to claim more. Some of the adjustments I see the insurance companies making, I don't see how doctors can afford to live. No wonder they have to see so many patients in a day.

I know you know the system even better than I. I'm going on Medicare this year, thank goodness. The insurance thing is driving me crazy with the premiums going up so high. I used to pay my own insurance, but the premiums went through the roof and I had to use the marketplace the last two years. I didn't want to have to do that. Sniff. My premiums this year are over $1K a month! Thank goodness for the marketplace and (later this year) Medicare. But it sure cost taxpayers.
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PhoenixDaughter, if they do what I think they are about to do, quite a few under-65 caregivers will lose PPACA based healthcare for themselves. There will be no subsidies for people who cannot otherwise afford premiums; there will be less money available for Medicaid and an increase in the portion people on Medicare pay in for themselves. I am hoping we can fight the battle of replacing the PPACA before removing it and that pre-existing conditions do not make a huge comeback. If Pres. Trump can actually reduce pharmaceutical profiteering maybe it will help but otherwise I think we are going to be very much screwed over - if the US becomes "healthier" it may only be because sick people will die. Honestly, if they cut NIH funding too it may not matter - it will be pointless to keep researching better treatments and cures that can't be delivered because no one but the ultra-rich can afford them. Most people can't even afford their insulin any more, and I am reduced to writing letters and sending in documentation for other similarly brand new innovative drugs - like gabapentin, baclofen, omeprazole, and oxybutinin. And that is just in the past month.
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I think you're spot on cwillie but I is wot I is Im afraid
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"I care that she is looked after properly, I care that she is fed and kept hydrated, medicated, hygienically looked after,"
Those are things are her most basic needs and would certainly be attended to in a facility
"She would expect me to visit at least once a day and I would have no rest whatsoever from just worrying about her."
Ah, but even if you felt the need to visit every day you would still have an hour or two to attend to your own wants and needs, and you could go to bed at night and sleep til morning.
"mum resolutely does not want to go to one"
Well I'm sure if you took a survey there are few who would jump for joy at the prospect of living in a facility.
"they would give her sufficient medicine to MAKE her sleep"
And that would be wrong because?... Her lack of sleep must be miserable for her as well as you, and it only exacerbates her dementia.

If you really can not bear the thought of her in a care home then you must take off your superwoman cape and allow your standards to slip a little, I think your perfectionism has become more a fault than a virtue.
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You're not wrong CM. I am such a worry belly I would be there seeing to it that she got the care she needed rather that the care they choose to give. While care homes for many people are fabulous places a) mum resolutely does not want to go to one and b) with her level of dementia I am pretty certain that despite all the guidelines they would give her sufficient medicine to MAKE her sleep (well they would after the first week, during which she would be a sweetheart but she can't maintain it. It was only after she had spent 3 weeks in hospital that they realised quite how demanding she can be). She would expect me to visit at least once a day and I would have no rest whatsoever from just worrying about her.

Im not so sure Dad would take it back...he could manage her really well...he just went out to the garage and tinkered when she went into one ...or in the younger years went to visit one of his ladies.....he wasn't sexually faithful but I do understand the reasons for that, however he was emotionally faithful he did love her, faults and all.

Would a care home (why do they call them care homes when care is about the last thing they do...look after yes , care? hmm not so sure perhaps we should call them caregiving homes. Huge huge difference between giving care and caring....I am a caregiver for sure but the carer bit is questionable really I guess. I care that she is looked after properly, I care that she is fed and kept hydrated, medicated, hygienically looked after, that she has friends who visit - do I care about the person? I don't think I want to answer that one. I love her but don't like her so I suppose that really answers it doesn't it.

I don't know what I resent more....myself for the choices I made or her for a whole host of reasons. As I have said before if a government doesn't care and by its lack of funding and its lack of support demonstrates that then why on earth do they think families will take full responsibility? Especially as they are woefully untrained to do so.
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Well for one thing "we live and learn - but none the wiser grow" (amazing how often we forget the second half of that adage); and for another what you said wasn't wrong, it was at least half right. And if that half helped someone else bite the bullet and make that move and feel less like cr*p about it, then you done good.

I lost count of the number of times I said "I can't do this any more, it's too hard/dangerous/nuts..." But the other thing is, that by the time you've got as far as you've got, you don't want to waste what you've already been through. And that's not really the best motive either - it's just pig-headedness, basically (I'm talking about me, not you).

But, so, back to the drawing board: what are the options?

And what are the reasons?

Pro home (home home, not care home, I mean):
You promised.
Some facilities are questionable at best.
Even if your mother did move to residential care, you wouldn't spend much less time chasing your tail and stressing about her.
You've already put in so many hard years.
It might break your heart.

Con home:
Your Dad didn't know what he was asking you to promise, so it doesn't count.
And if he knew now, he'd take it back anyway.
Many hands make light work.
Trained staff have stuff like training, and rest breaks, and paid holiday, and sick leave, and other people to help them. So it would stand to reason they do a better job.
Depending on how you assess "better" and "job", of course.
But anyway it's not like you wouldn't continue to supervise.
You need to sleep at some point in the next six months.
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I have come to the conclusion that I have spouted a lot of £$%^ to people about giving up caring when you know it is time. I think if I had a partner it might be easier but, then again as I don't, I may be wrong. I know that isn't being a good caregiver either but it is what it is.

I do hope for your sakes over there that dissolving Obamacare is going to benefit you all - I have a horrid feeling it might to quote the man himself end up being a 'bad thing'. Mostly I hope that those who really really need help are not deprived of it. So while I am not being great at caregiving because of the choices I am making I guess I am lucky to still have choices.
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Confession time: after years of going nearly apesh1t because mother *would* *not* use her beeper to call me when she wanted to get up and move about, when she came back from rehab bedbound they gave her a new buzzer with a juicy-looking green button on it, wired up to her fully-equipped hospital airbed. After two full days of her wondering what it was for, and pressing it to find out, I wordlessly unplugged and removed it. The irony was not lost on me.
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...and that was supposed to help your sleep issues????? Don't you love the "experts" who create more work for the people who actually do get the job done?

Back to your original post, jude, is anything happening that will actually help you? Your sanity and QOL, and not to mention your physical health (which must be being compromised by all this stress), are important!!!
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Oh Jude just cut the bloody wires. (Unplug it first) Or youcould take them to the helpful person's office and sit outside pressing the buzzer every couple of minutes!
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Oh cwillie if only .... unfortunately the darling bloody social workers sent along someone to 'help her' (not someone to help with her care but someone who could recommend things and order things for her use) and in doing so they put in a pressure pad which will buzz if she tries to get up and a buzzer like watch which she will buzz ad nauseum and boy do I want to find somewhere for it that is very dark! but it buzzes a very high pitched SOS signal and I defy anyone to sleep through it for very long - only once have I managed to but I was just way past the usual tired by then. xxx though I do know exactly what you mean.

To be balanced they also ordered us a day date and time clock which is brilliant
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I know that you hold yourself to incredibly high standards, but once you had gone to her at 2:30 and again once or twice, and you were certain that there was absolutely nothing you could do to divert her or satisfy her, was it necessary to continue running to help every time she called? You say she can't get up on her own, what would happen?
Long ago I used to visit the nursing home (or even the hospital) and I would be appalled that no one was answering the call bell or rushing to comfort someone who pitifully cries out for help. Now I understand that sometimes there is no way to help, absolutely nothing to do to make it better, and caregivers can be run ragged without ever accomplishing anything.
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Reminds me of last summer, when my mom got hold of "I've got leprosy; you know all about this Barbara, don't tell me you don't. Don't put me through this!".

After a lot of reassurance, visits by the dermatologist and agonizing, we had them up her anti anxiety meds. My sympathies, Jude.
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That is a funny preoccupation she's got hold of, PD. She hasn't mentioned what sort of meat or what she was planning to cook with it? Just wondered if making it might be a temporary solution (temporary until she moves on to the next worry, that is).
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Well on and on the saga goes Mum is very very weird - no infection so we are clearly in a stage change. 2.30 until gone 5 this morning she kept on and on calling me and asking me about the meat in the fridge and the people who she had invited for dinner. Now bearing in mind she put the meat in the fridge (not really likely since she hasn't been into the kitchen in this flat (1 year near enough and hasn't cooked a meal on 6 years!) Eventually she slept but we are still back on the meat again and it is nearly lunch time. I have taken her into the kitchen in the wheelchair and she now says she is being silly. Thank the lord I thought.....WRONG...... next sentence????? I put it in the other fridge no wonder you can't find it!!!!!!!!! Its going to be a long day!
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For me, that's what it's like when I'm overtired. I hope you got a whole lot of good zzzzzzzzz's!
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Well if you met Mum today you would have thought nothing was wrong with her - well if you had met her this morning. She was almost sweet natured, actually kind to me and compliant (which she never is) We had a mega blip this afternoon when she wanted to learn how to use the phone. But she has been compliant again tonight and is now in bed so I am taking advantage nnite folks
An hour on and sleep wont come - what is it with sleep deprivation I should be out for the count
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Oh no Jessie I understand that really well. It isnt really complicated over here IF everyone did their job properly BUT they dont. It should work like this ....I need respite for Mum I ring the social worker she organises it and we pay for it BUT in reality I ring the social worker and she says she cant tell me until 2 weeks before I can go whether I can have respite for Mum. If we have below a certain amount of money the state pays if not we pay - but they have to do a financial assessment - that's yet another department and so far I have waited a year for one. And then I have to demonstrate that I havent spent down any money.

Or I am eligible for 3 hours a week respite - well hey I am entitled to it but can I get it? Nope - no assessment been done.

It because all the departments are separate and theres no bloody rope that will tie them together. So far I have dozens of numbers of people that might help but in the end you get so fed up of waiting and 'who did you speak to' and Oh she/he isnt here any more that you give up which is precisely what they want you to do.

It is only if I go into full melt down that they will do something but that will probably mean me being treated not the root cause.

The Alice in Wonderland analogy is spot on
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PD, people are so uncomfortable with people who don't like their mothers. They don't understand that not all mothers are that stereotype snow-white image of motherhood. I doubt that very many are. Your mother is one of the most difficult ones I've read about. I am so glad that you're trying to step away. Taking care of someone who shows no love or respect can make us feel crazy, like we're being used up.

Care navigator sounds like a fairy-tale name for a social worker. Some are good, but some are not so useful. Your elder care system over there sounds very complicated. The only problem we have in the US, beyond cost, is trying to talk the elder into going into a facility.

Your talk about mazes made me think of rabbit warrens. They can build a large maze of burrows underground on the English hillsides. Made me think that doing elder care in the UK must be like jumping down the rabbit hole. No telling what you might find in the maze -- Mad Hatters and Cheshire Cats perhaps. Sorry for the run-on distraction about Alice in Wonderland. Maybe it is relevant or perhaps I'm going nuts here. :-)
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