You need to know the truth about the elephant in the room.

This is a dementia related post I’m afraid, but it’s also, kind of, a warning. As I’ve probably said before, but I’ll say it again, the reason I write the posts about my dad are because most of us have no idea what happens when a person gets Alzheimer’s. Usually, we hear that someone has been diagnosed, they tell people, you meet them around the place and they have memory problems but seem more-or-less OK otherwise, and then they disappear. The next thing that happens is that five years later, you learn they have died. I’ve never known what happened between that point when they stop going out into society and the point at which their death is announced.

Now, I am learning, so I am sharing, as I have done all along, because I hope it might help someone.

Dad tipped suddenly and completely into full on swearing, spitting, shouting lunacy last week. So much so that the dementia nurse who came to see him called in the emergency dementia team. We looked at removing him from the house at once, for respite, but they could only do 3 days and we thought he would merely return even more disorientated and crazy. Then we discussed whether we should have him sectioned and taken to a psychiatric ward somewhere. Mum vetoed that one and certainly, it seems to involve a lot of moving the person about which is not what we want. We were asked how long we could go on with him at home and I told them ten days at the absolute outside.

Obviously, he needs to be elsewhere, fast but he doesn’t realise where he is at home – he asks Mum frequently if he is supposed to know this place and it’s been his home since 1974 – so it’s not going to help him if he’s moved from pillar to post before he’s settled somewhere new. We are hoping we can get him somewhere where he will then either stay, or if it’s miles away, only be compelled to move homes once, when a place crops up somewhere nearer. All this is complicated by the fact that he’s only just run out of cash so the financial assessment hasn’t been done yet – that’s for Wednesday, while his care needs will be assessed on Tuesday.

On the upside, Dad has a urinary tract infection and now that is being treated he may well be a little easier to deal with – UTIs as they call them are well known for exacerbating the symptoms of dementia because they affect kidney function so you get all sorts of stuff building up in the system that shouldn’t be there. However, the fact is, the shouty thing we have seen this last week is where the disease will go next and ideally Dad needs to be out of his home environment and settled in a care home somewhere before that hits full time.

Worse, if we get no progress by the end of the ten day deadline (end of next week) I will have to have him sectioned because he is violent, in that he shoves people and throws things and this presents a considerable threat to someone fragile such as Mum.

There’s a very good bit in The Contented Dementia Sufferer, which has, kind of, been my bible in this process. It talks about how you spot when it’s time to put the person into a home. It explains how you turn your house into a nursing home for this person with dementia and then the moment comes when you look around you and think, ‘hang on, this is ridiculous!’

We have reached that point. Actually, we’ve reached the moment when all three of us have hit that point. My brother has probably been up for having Dad in a home pretty much from the get-go, I have been from about November last year but now Mum has come round to the idea too. He’s unable to express it but I think that even Dad is up for moving to a home. Much of his challenging behaviour could be put down to boredom. Dad is always perfectly manageable when we go out, he hardly swears and is polite and chatty to people. In a busy dementia wing, with lots of folks wandering about, I think Dad would actually thrive. The care team are agreed that he’s bored. So we’ve all reached the same conclusion. Dad needs to go into a home.

Next we have to make it happen as quickly and compassionately as possible for all parties concerned.

Now there are ways and means to homes. With Dad we have tried to strike up a relationship with a lovely home nearby. We were hoping to get him in there for a day’s care each week first so he ould get to know the staff and when the time came, the move would be seamless. But they don’t do local authority rates, which means we’d have to pay at least £500 a week and of course, now that Dad’s assets are gone, we don’t have £500 per week. I think this strategy would have worked if we’d had a better understanding of the benefits and care system since we’d have chosen from one of the homes that takes funded residents. It’s excellent if you are self-funded since that’s not an issue.

Obviously at the time we started it off, Dad was self-funding but also, I was unaware that Dad’s income and Mum’s income are seen as separate for this purpose and therefore, Mum’s assets are hers and now that Dad’s have gone he is eligible for funded care, regardless of whether or not Mum has any money of her own. Dad will have either Local Authority care or (if applicable) National Health Continuing care – although that is a bit of a lottery – but we will have him assessed for it, anyway.

So, big lesson for the future here, couples. Keep your capital investments and your bank accounts separate; his and hers. A joint account is fine, but you also need one each of your own. And if you are looking after a brace of parents and only one of them is ill, it’s the ill one’s cash that is being assessed here, not the well one. Plus, if the well person owns a house with the ill person, it cannot be sold to fund care while either of them is living there. In other aspects, the rules of engagement seem to differ from local authority to local authority. There are check factors for NHS continuing care and certainly Dad’s symptoms would fit those, but he has Alzheimer’s so it’s not always a given, even if, legally, it is supposed to be.

Modern medicine being what it is, Dad has lasted a very long time. He was diagnosed with Alzheimer’s just over 5 years ago but has been experiencing cognitive and memory difficulties since 2004. By 2010 Dad was unable to read a full length novel. By 2014/15 he was unable to read at all. He has needed live-in care since 2016 – actually he needed it well before that but Mum did it all herself, refusing, point blank, to accept any but the smallest amount of help until 2016; March, to be precise, which was the point at which her health finally broke down and she ended up in hospital. We had seen it coming at Christmas and so we had been working with the local ladies who came in during the day to sit with Dad while she went out into the garden. We’d been trying to get a 24 hour rota together. We came close but couldn’t cover weekends.

Obviously, when Mum ended up in hospital, neither my brother nor I was available to sleep with my Dad for more than a week so we got live-in care then, against my mother’s wishes, initially, but she did come round eventually.

Dad is still going strong, even if his mind isn’t and I could see him being hale and hearty, if totally batty, in three, four or even five years’ time. The pace his Alzheimer’s is going, if it is the disease that kills him rather than time, nature, or something else, he has a good eight or nine years of twilight to come, minimum.  Even if he’d been a millionaire, his cash wouldn’t have lasted long enough to see him through. As it is, Dad wasn’t a millionaire, far from it, but his life-time accrued assets have amounted to three years of live-in care, with extra night cover, a fair few extra hours during the day and so on.

One of the things about self-funding is that many homes will need you to be able to guarantee residency of two years from the funds you have. Obviously if the person dies, it’s different, or if they ask you to remove the person. But it’s worth thinking about if you’re looking at a home. If you have say, three or four years’ worth of funds for care, I’d think hard about making sure you find a home that will accept local authority or NHS funded places. You and your loved one with dementia may well hope that they will die long before it gets to the point where they need the home. It’s true, they might, but you can’t bank on that. You have to plan for them being like my poor dad and having to endure every single last horrific minute of Alzheimer’s as they grind their way on to a slow, tortuous and frankly horrific end.

To that end, it’s worth finding a home that will provide respite care or do some kind of day care/club so you can get the person with dementia going there regularly and get them used to it. Either they have to agree to go into a home while they are lucid and able, and get to know the place first, or you have to make up an elaborate ruse as to why they are going. In Dad’s case, one of the carers came up with a totally inspired one that he was going to a social club where there were a lot of very bored people who needed someone to talk to. Dad is basically well-meaning and was only too happy to oblige, chatting, turning on the charm and generally being very well behaved.

Mum promised Dad that she wouldn’t put him in a home and as a result neither of them thought to pick one out one just in case. To be honest, Mum and Dad have always assumed they will die before the time when many of these tricky decisions have to be made. Now that Dad isn’t really cognitively able, Mum has done her absolute best to honour the promise she made. However, neither she, nor Dad had any clue of the horrors they were to endure. Let me elucidate.

Your Alzheimer’s suffering loved one will gradually regress. First they will lose their memory, forget things, then they will start to lose their understanding of social skills, they might swear, say inappropriate things, especially sexually inappropriate things and like small children, will ask people to marry them. As an example, some of the choice phrases I have overheard.

‘Have you ever been fucked up the cunt by a man?’ to a nine year old who countered,

‘Pops, I know what those words mean, but you really shouldn’t be saying them in front of me.’

Inappropriate sexual suggestions may be made to said nine year old.

Alternatively, your patient will shout,

‘Fucking hell you’re fat!’ at people who have come to help them.  They may spit at them, throw things and tell people to, ‘fuck off out of my house! You fucking awful fucking woman.’

On other occasions, while trying to actually be helpful, they may tip their food on the floor. They will think that scraping the leavings off their plate onto the carpet at their feet is helpful because they will have completely forgotten about the middle bit where they take the plate to the kitchen and scrape the leavings into the bin. As they realise it gets a result, they may relearn that it’s wrong but continue to do it to get a reaction.

Tiny things will cause them to completely lose their biscuits. You have no idea how bizarre it is watching an eighty six year old man throw himself to the floor and lie there kicking and screaming because he doesn’t want to get dressed, in the exact same manner as a very spoiled and unpleasant two year old having a trantarum. Except, of course, you can’t just pick up fourteen stones of eighty six year old and carry him off under one arm. It’s fucking surreal, I can tell you. You can’t reason with them the way you can reason with a two year old either, they lack the cognitive capacity.

The Alzheimer’s patent in your life will do completely odd things like decide they hate their walking frame and pick it up and throw it across the room as soon as they sit down. If it happens to hit the sufferer’s frail and elderly wife, things could get pretty grim. Thank god Dad can’t walk about, he’d probably have fucking murdered someone! But seriously, an aside on that, one woman did get attacked by her father who had forgotten who she was and thought she was a robber. He was chasing her around the house with a kitchen knife when she texted his neighbour asking for help. The neighbour came and knocked on the door. Her father stopped the chase to answer the door and explained he was looking for a burglar who was in his house. Meanwhile his daughter slipped out of the back door, climbed to safety over the garden fence and into her neighbour’s house, through the back door, which he’d left open.

Other things Dad has started doing, he chucks stuff. His chair was next to his record collection but after an afternoon where he sent the records spinning across the room at Mum and the Carer, Odd-Job style, these have been removed. He tears up and throws books. He spits at people. He clears his throat, leans forward and spits on the floor (we have Lino in our drawing room now).  He asks for tea and then tips it onto the floor. This means he can’t have his water cup near him, either. If he wants water, he will ask.

‘Will someone kindly get me a drink of water?’

Unfortunately, he has no sense of time passing so if the cup is not in his hand before the question has left his lips, sometimes before he has even finished the thought, he will believe he has been sitting, thirsty, for hours and he will ask again, more forcefully this time.

‘I said will somebody kindly get me a fucking drink of water.’

Say, heaven forefend, he has thrown his sippy cup at someone earlier, or lobbed it away at some point and it takes a little time to find, or its landed on its side and it’s empty, the Carer may well say.

‘Oh dear, it’s empty, wait a minute and I will get you some more.’

While she is walking to the kitchen, filling the cup and bringing it back, Dad will think he has spent many hours neglected, waiting for his water and will have worked himself into an apoplectic state of rage.

‘I hate you fuck off! You fucking horrible fucking woman!’ he will be shouting. ‘I want. A glass. Of fucking. Water! Is that too much to ask? Get me some fucking water you fucking horrible people. I hate you! You fucking stupid bloody woman!’ And so on.

As a Carer, you need to time your return since if he is too angry, he will spit at you and try to push you away, or throw something at you; this may include, a vase, place mat, handkerchief, glasses or even in one memorable instance, a clock.

This is absolutely standard for Alzheimer’s patients. A few escape but it’s only a tiny handful. It’s best to assume that your kindly gentle loved one will go thought the violent, paranoid shouty phase with as much energy and conviction as everyone else. And when you hear stories of Alzheimer’s affecting people like this, it is never accentuated as the norm. Nobody ever dares mention the elephant in the room and if you’re a blind knob, like me, you miss it.

Obviously, you don’t want your loved one to be at home when this phase of the disease hits especially if their spouse is still alive. Timing it is very difficult, though. Clearly, you want your person with you while you can appreciate every last tiny flickering spark of who they were and still have them happily ensconced in a home before they reach the point where they have transmogrified into a rather less amusing and a lot more dangerous version of Father Jack.

But there may be a waiting list for the home you like and the patient’s name might not have reached the top yet. Furthermore, you may well feel that you don’t want to peak too soon so a spot may come up while they are still perfectly manageable at home and then, suddenly, days after you’ve turned it down, you will wake up and find your hitherto placid – if forgetful – loved one has turned into a spitty, screaming rage ball.

If that happens, the most important thing for you to take away is, it’s not your fault or theirs, but it has happened and now that it has, something must be done, at once.

Ideally, you will have picked the home together way before that, and the patient will move in while still cognitively able to think altruistically about their loved ones. But ideal and real life are so different aren’t they? My parents did not do this. Neither of them expected years of twilight lingering, they expected to snuff it quickly, but twilight lingering is clearly their lot. If in ten year’s time I am still writing posts about Dad’s latest antics, I will not be remotely surprised. The way I feel right now, I wouldn’t turn a hair if he outlasted me. But my point is this, I think my parents had absolutely no idea what they were walking into and I think if he’d had the slightest clue what the shouty stage entailed Dad would have been a lot less intransigent about dying at home and Mum about letting him. In fact, Dad would have probably booked the home and moved in, himself.

Even so, it’s impossible to get the timing right, there will never be an instant place the moment the need arises. You will either be incarcerating your loved on a bit before they are ready or a bit after. Or the downturn will be extremely sudden and you’ll be having them sectioned.

It may be that when someone is diagnosed with Alzheimer’s there is all sorts of support that helps walk them through these decisions, helps them and their family to prepare for the point when the person becomes mute and the only thing that speaks is the disease. Because however distressing and horrible it is, you need to see that, need to be aware that it lies ahead for everyone.

But although Dad was diagnosed in 2012, nobody actually bothered to tell Mum or him until 2017. By that time, his memory capacity had fallen from 80% to 40% and my brother was already pressing for Mum to put him in a home – my brother’s wife was a care worker for a time so maybe they knew more about the screaming, spitty anger ball phase looming ahead of us than we did. I mean, we all knew Dad would go nuts but there’s nuts and … NUTS.

Even so, it was only in 2018 that Dad’s personality began to really change. Suddenly, he became a little more child like, a bit spoiled, had to be the centre of everything but even that was bearable, although I started thinking about respite care for him and because I didn’t have the right knowledge about how Dad’s care would be funded I was nervously husbanding our resources, knowing that there was only a year and a half of care left when we went over to Mum’s assets, or about six months if Mum was at home with carers and Dad was in a home. As it is, Mum’s funds will see her for about three years if it’s just her care (much less required than for the two of them) or if Dad is funded.

People talk to you about ‘nursing care’ and you don’t really know what it means, you think it’s continence or ability to walk and dress, or maybe waking up in the night a lot and not knowing what time it is. Nobody points out that what ‘nursing care’ is really for is that bit between the not-being-able-to-remember-things stage, and living-corpse-open-mouthed-gaping, end-game. Neither does anyone point out that during that bit, your relative with dementia is going to go completely, fucking bat-shit crazy.

I’m talking about The fucking Shining.

That’s why I’m telling you now.

Because you need to be prepared.

You will not find your loved one in crazy.

There’s no reasoning with crazy.

There’s no living with crazy.

By all means try and keep your loved one at home for as long as is humanly possible, but don’t be fooled by the vaguaries and pussy footling about from people who are too British and awkward to tell you the truth.

When someone says that your relative with dementia is going to need nursing care and need to go in a home, what they are telling you is that your loved one is highly likely to go absolutely, completely, fucking off their rocker. So much so that, if you’re at home at the time, they might kill you.

If you’ve followed my posts about dementia,  you’ll know that I have learned this via a somewhat circuitous route. Now, I’m telling you, so you don’t have to.


Filed under General Wittering

48 responses to “You need to know the truth about the elephant in the room.

  1. Reblogged this on Jim Webster and commented:
    I don’t often reblog stuff, but this is something a lot of people need to see and to think about. Few people are as honest as Mary and she deserves to be heard.

  2. I’ve shared it because it has to be shared

  3. We have Memory Support here. Someone we have known for a couple of month, part of a couple we were having dinner with not that long ago, has suddenly had to move to the Memory Unity. The spouse is still in shock, because the problem advanced very suddenly. We know several other couples where one or the other is getting awfully smiley and vague.

    But we’ve never seen the stage you describe, and I’m glad you’ve prepared me for its possibility (unless I’m the one to go first!). I have no idea how these things would be handled at the ‘care home’ stage, no idea what the staff do all day with people who express rage, no idea how they are fed and bathed and kept occupied.

    It is so sad, but it points out that lack of information makes for very bad choices.

    US choices are very different – the state does not pay for nursing homes unless you are indigent, and the nursing homes in that category are not pleasant places (I have a friend in one).

    Hope the people studying dementia get their act together soon.

    • It is a shock. I’ve been working on Mum for a while so I’m glad she’s ready. I just hope we can sort it fast.

      What you say about poor choices, so true. People who protect the sensitivities of others I’m not telling them the truth can be a total menace. That said with something like dementia, it may be very hard for them to face up to the change in their relatives themselves. Let alone wax lyrical about it to someone else.

      My dad was an incredible diplomat but he has always been unfailingly honest, and I feel that he would want me to share his story as it really is. I’ve tried to preserve his dignity but I know Right Mind Dad prefers honesty to lies.

      On Sat, 26 Jan 2019, 17:07 M T McGuire Authorholic

      • I just wonder how trained people can handle the behaviors – while preserving as much as possible of the dignity of the people in their care. There are a lot of horror stories, and many people who are not trained or don’t care have to be hired to fill numbers (and because those are the jobs that are available for job-seekers with few skills). That’s what people fear about ‘being put in a home.’

        They say the people who get treated best in nursing homes are the ones who are visited regularly by family and friends; I will probably not get many visits from the kids because they will not be close by. I worry. I hope I don’t care when it happens, but I have a lot of special needs.

        And I worry about how I will treat those who care FOR me, and how it will affect MY care. I have rigorously maintained the fiction of being a nice person, so as to get on in society, but those filters are the ones that go! And I react so badly to drugs…

      • A lot of the stories exaggerate. Eg, here in the UK you can’t force someone to eat. You offer them did and note that you’ve offered then food. Likewise if they are going to get all aggitato if you make them dress, let them at pyjamas. Dad has to have a shower every morning because he is doubly incontinent. But if he wasn’t, clean clothes and a shower one a week would be fine in my book. You hear scare stories about residents with long nails and people say they aren’t looked after but maybe their carers are just choosing their battles. Better someone is persuaded to eat a meal instead. Some holes are awful but some are painted as such by people who have no concept is the behaviour of those in their care.

      • You can’t force someone to eat. However, you can offer them food, and then remove it uneaten, and not offer more – because people with dementia can be erratic about knowing if they’re hungry!

        And, worse, you can offer ‘food’ they don’t like and can’t eat due to dentures or teeth problems – and instead feed them endless cookies because they will eat those.

        Just stuff like that, which families should supervise. Weight gain makes for problems, and weight loss is common.

        As long as I’m not too miserable, though, if I have few visitors and no reason to stay alive, floating off peacefully might be a blessing.

      • You may have CFS and as I understand it, this can cause brain fog and similar, but I think you are one of the most un-demented people I’ve come across if that helps! 😉 I hope the assistance required remains at just, assistance and only on a physical level.

        Agreed re your comment about food. What we do with dad is feed him stuff like scampi and chips with peas or broccoli or something he can pick up. Then we put it beside him and he’ll say he’s not hungry but if we leave it there and all watch telly together, he’ll usually eat it with his fingers, almost without noticing. At the moment he’s really enjoying his food and eating well.



      • Oh I worry about how I’ll treat people too. I think I’m going to write a letter to be kept with my will that apologieses, for any awfulness in advance, to be kept with me if I do have to go into a home. It will say that I’m ill and I may be awful to people and that I am writing while I am sane and rational and myself, to apologise profusely for any actions I take when I am no longer sane or rational, when I have lost my ability to temper my raw child like urges with kindness or courtesy. Then I will request that it is put up in a frame on the wall of my room so people can read it and see it, and I will ask to have it kept on file in the home, in case I throw the one on the wall at someone or something. And I will a request that the letter is shown to the people who are going to have to care for me.



      • Oh, and there IS a difference between being ‘honest’ and blurting out whatever you are really thinking. The first can be done with charity; the second can hurt a lot of feelings.

        Thanks for being unflinching about posting. I wish I’d known your dad before. He sounds like a fascinating person. And your mum must have an enormous amount of patience.

        I wish people wouldn’t make promises, like keeping someone at home, that they then let dominate their own lives. Sometimes it isn’t possible.

        My friend in the nursing home wants only to ‘go home,’ and doesn’t seem to be able to understand (or refuses to) that she is now indigent, that her husband HAS to work – and has his own problems, and that she must not ever be alone because she can’t do anything for herself (she had a stroke). It’s wearing on everyone – even if the nursing home carries a lot of the blame for how she is treated. I don’t think she’ll be able to go home, and she’s my age. However, she does continue to show the tiniest of improvements every time I talk to her. Maybe… God willing…

        I hope, in her condition, I would be working on regaining abilities – which would have to be on my own, since the state won’t pay for much ‘therapy’ – so it might be possible to go home some day. But no one can know what another is really dealing with, and she may simply NOT be able to.

      • I hope your friend does improve – if only enough to understand her situation and make the best out get herself home. People do come back from strokes. Here’s hoping.

      • I’m hoping, too. She’s too young (ahem, my age) to be stuck there and I’m sure she’s only telling me part of how bad it is.

  4. While I realize that this references your health care system, it’s impossible to ignore the personal tragedy of this. It could happen to anyone, in any nation.

  5. Wow. A painful but amazingly insightful firsthand account.

  6. I’m sorry. This sounds really hard. 😦

    I’ll be sharing this because though I’m in the US, it is very relevant here, especially since we have no real national health to speak of. Nobody talks about this part of it much here either. Older folks have Medicare, but I’m unsure of what it covers, and many care homes generally require you to sign your assets away when you go in.

    • Bless you, thanks. It’s tricky but it’s not as hard as the part where Dad knew what was happening, to be honest. Real Dad has gone, we get glimpses but for the purposes of most things, he’s gone.

      I can believe it about signing over assets. We have reached a stage in this country where only one party can gain a majority in parliament and it’s been in power way too long. That particular party (our conservatives) are moving from their normal position (about where your democrats are, politically) to the right – more towards the nutter element on the fringes of the Republican Party. So they are currently in the process of dismantling the NHS. Partly because it costs a lot to run but mainly because many of them are in business and stand to gain from tendering for healthcare contracts so they just can’t wait to get their trotters in the trough.

      Trouble is, we have a couple of generations of people, such as myself, who have never needed to buy health insurance and who are now in their 50s and 60s and therefore ineligible for meaningful cover anyway. The conservatives are unable to grasp this concept and don’t care anyway, since, as MPs they they all earn enough money to use private healthcare, anyway, and most of them are the worst kind of entitled upper class gits, cf Boris Johnson, Jacob Rhees Mogg etc. So they have too much money sloshing around to understand such a concept, too little imagination to see it, and despise too many of their fellow countrymen and women for not being rich and entitled to give a shit anyway.

      We’re now stuck with the conservatives in power forever since the people who voted for their only viable opposition now vote for single issue parties, or the extreme right, or a huge number, very sensibly, vote for their national parties in Wales, Scotland and Northern Ireland. The Conservative party is also at war with itself, indeed, the whole Brexit issue was the result of a dick waving competition between the prime minister at the time and a member of his cabinet who wanted his job.

      More and more people in the UK will end up paying medical bills with their life savings. It’s a pity because I, personally, think the American system is little short of barbarism. But I’m a socialist.



  7. An amazingly and gut wrenchingly honest of account of living and loving someone with dementia. My Granny died from it when I was 17, there is nothing but pain and horror when it comes to dementia and what it does to someone you love and the heartbreaking and disturbing ripples it causes. So sorry sweetie but so proud of you for writing this, it needed to be said. ❤ xxxxxx

  8. Doug

    For those in the UK, it’s important to point out that the way care is delivered and funded is different in Scotland. I can’t comment on Wales and NI but check it out where you are.

    • Because it’s dementia it’s classed as a ‘social’ disease so it’s often funded by the local authority. That means that it’s different, literally, from county to county as well as country to country.

  9. Diana

    You’ve dropped a few hints lately that things were not going well — but I wasn’t even close to imagining how not well. I am so sorry. Thank you for taking the time to share. You’re right: we just don’t have a clue, unless we live through this with someone. Not everyone gets angry and aggressive (I know a very sweet 96 year old with advanced dementia) but their personalities do get hidden, and sometimes never show themselves again.

    In the care home Mom was in, the doctor told us that the average length of stay (meaning before death) was 18 months. I think many of the residents were drugged up so that any aggression was minimized. Mom’s neighbour was a large man who seemed very sweet and lost, but liked to wander — and she was afraid of him, because he used to come in to her room (at least she told us he did). He went from one week to the next from being a rambler to being wheelchair-dependent and unable to do much of anything for himself. I don’t really know what happened, but am pretty sure he was drugged up.

    Oh — and just a thought: has anyone considered pain meds for your dad? Might he be angry because he’s got pain he can’t communicate about? (And no, I am absolutely not trying to add to your burden of care.)

    Care homes in this part of the world are understaffed (think 1 doctor for 120 seniors with a wide variety of care issues, who is only there 2 hours a week) and not well supported.

    It sounds like the options in your part of the world are much better. May a place be found for your dad close enough to visit regularly, and comfortable enough for him that he will enjoy the change, as much as he is able.

    May peace be yours — know that you are good good daughter, raising a lovely son, and caring for your parents with all you can. Bless you. Writing this must have been hard, but I appreciate so much that you did.

    • We did wonder about something like that, it could be a factor and although it’s officially a ‘silent’ urinary tract infection that he has it could be hurting him. But because he won’t let anyone come near and it’s difficult to get him to get up and come for a walk, he is getting pressure sores.

      The walk protocol goes like this: ‘Will someone take me for a walk please? ‘Sure, let’s go, here’s your walker,’ ‘What’s that for?’ ‘You said you’d like to go for a walk.’ ‘I fucking didn’t.’ ‘OK, I’ll put it away then.’ Carer puts walker to one side and sits down again. ‘I said I wanted to go for a fucking walk! Why won’t any listen to me around here? I asked nicely.’ ‘Sure, let’s go, are you ready to get up?’ ‘I’m not getting up.’ ‘You have to get up if you want to come for a walk.’ ‘No. I’m NOT and you can’t make me.’ ‘That’s fine, nobody’s making you do anything but you have to get up out of the chair if you want to come outside.’ ‘I don’t!’ ‘So you don’t want to get up and come for a walk with me?’ ‘Of course I don’t you stupid bloody woman. Fuck off!’ ‘Okaaaay. You’re sure?’ ‘Of course I’m sure you stupid fucking bloody woman. Now fuck off and take this bloody thing with you.’ (Throws Zimmer frame across room) ‘Alright.’ Carer retrieves zimmer and sits back down. A few seconds pass and Dad says. ‘You horrible bloody people, why won’t you let me go for a walk? I want to go for a fucking walk!’ Repeat with rising anger, ad nauseam.

      Many carers are saints, I couldn’t do it. And it does make you understand how people end up starved in some homes, if this kind of scenario is played out over say, food. Because you can only offer them food. You can’t force them to eat.

      So it is difficult. Many folks with the shouty stage come out the other side like the old lady you describe, but my grandmother had vascular dementia and she never became aggressive in the first place. As I understand it, the aggression is a particular factor of Alzheimer’s.

      Thank you for your good wishes, we will get though, it’s just a case of gritting the teeth and getting on with it.



      • Diana

        Right — I’d forgotten about the other. Mom apparently had signs of both types. I should find out, if I can, what my aunts were dealing with.

        I cannot fathom what that kind of so-contrary behaviour and aggression would be like to live with. I think your parents won the lottery with the carers you found for them.

        As my mom would say in her better days “You’se a good kid!”

  10. A nightmare waiting to happen for most of us …

  11. Here’s looking at you, kid. Humongous hugs.

  12. Reblogged this on Sun in Gemini and commented:
    At the start of this, ourselves. This is one of the best posts I’ve seen on the subject…

  13. It is good to have a place to vent the no-doubt frustrating aspects of parenting your parents. The trial comes when doing enough and doing it in a timely fashion is always going to tip into the self-denigration of “Why didn’t I do this sooner or do more or do it differently?” I only know this from my observations of my grandmother’s descent into Alzheimer’s via pharmaceutical destruction. (She had Parkinson’s and the meds to treat the condition apparently caused or exacerbated the slow rot that is dementia.) I was removed from the day-to-day struggles. I visited from out of state and could always leave when it was too hard to bear. I do not envy you your responsibility of loving someone who’s brain is slowly being eaten by their disease. But, it sounds like your parents are lucky that you and your brother are there to help them through the absolute fucking nightmare of being human and slowly devolving from the living state. I hope the path is swift and short and that your patience is long and renewable.

  14. Mary, I know what you’re speaking about as my mother had Alzheimer’s from the 1970s to the mid-1990s. She spent the last six years in a good nursing home. She was a quiet person so that wasn’t the problem. In her case, she gained so much weight we couldn’t physically handle her at home. My husband was small and I didn’t have the strength. She lost bladder and bowel control and I had no home care available we could afford. She was a widow. We were in the U.S. Her doctor who had diagnosed her, told me we had done all we could and it was time to move her. She was in her mid-eighties and lived until almost ninety-three. If we’d somehow kept her at home, she might have outlived me. My health was breaking. She didn’t know where she was in time or place but wasn’t hard to get along with. She never got violent. They put her on a diet and when she lost sufficient weight, she could walk around. pushing her wheelchair. She finally found it difficult to eat and weakened, dying of the flu she caught in the nursing home. It was very peaceful. —- Suzanne

  15. Steff R

    Thank you for your honestly and open-ness, I am sure this is very helpful to anyone dealing with this right now. I am so sorry things haven’t worked out with timing the financial options for homes, it all sounds unbelievably stressful on top of all of the other things you and your family are contending with. It sounds like the NHS could be doing a hell of a lot more on the the helping families plan their management/care trajectory with this disease. My Mom is a private home nurse and has had to leave cases because people with dementia still had bloody guns in the house and were known to wave them about! I was horrified (ah America).Thank you for raising awareness of all that the Carers as well as family have to deal with. I hope things settle down soon if they haven’t and you find a place for your Dad asap. Hugs. xo

    • Dementia and guns is just … yikes. America. Er hem.

      Dad is now in a home and it is very clear from the other residents that his behaviour is absolutely standard, I might even dare to say, text book Alzheimer’s. Which just goes to show. Mum and the carer dropped him off yesterday. When they arrived there was a little old lady sitting in the lounge. She smiled at them so Mum’s carer, said, ‘hello’ and the little old dear said, ‘Fuck off!’ Mwahuahahargh! Sorry but you have to laugh really.



      On Tue, 26 Feb 2019 at 15:58, M T McGuire Authorholic wrote:


      • I am very relieved to hear that. Although I am sure it was not an easy decision, it definitely sounds he is in the right place. No need to apologize, it must be a bit comforting in some way to see other people in the same stage as your Dad, to know that it is normal/ the way it goes. Not to sound pat or like I have any real comprehension of how it must feel. I’m not sure if you had a chance to see it or if it will be released on dvd but David Baddiel’s My Family touches on his own Dad’s Alzheimer’s with great humour and heart.

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