Tag Archives: alzheimer’s

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.

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Accepting the way dementia transforms someone you love.

It’s been a rough two weeks on the old dears front and now things have settled again, I feel I can talk about it. There is a maze of guilt and awfulness to experience when someone you love gets dementia. It is really hard to watch the pieces of their personality gradually disappearing. I know that Sir Terry saw it as little pieces of himself disappearing forever every day. The trouble is, if you are close to a dementia sufferer then for the sake of the sanity of both of you, you cannot allow yourself to see it like that.

Mum and Dad’s wedding photo. Check out the hands. Hanging onto one another like they never want to let go.

There was a time when I felt that Dad was dead to me. That the person I knew had gone. That made me feel like shit on oh so many levels. Actually, it isn’t true. The person I knew is still there, but parts of his brain have gone. I reasoned it out like this:

If he’d had an accident and become paralysed from the waist down, I wouldn’t write him off because his legs didn’t work. So his brain is stuffed, it’s just a different part of the body, so what was the problem?

Even so, there was a period when I felt that I could never learn to cope with this new stranger in a familiar guise. My dad who wasn’t my dad. There were times when I almost wished he would die, not because I wanted him to but to end his suffering, and ours. I still envy people whose parents die suddenly or after a short illness, but that’s because treating Dad with the dignity and humanity I should takes an exhausting amount of moral fibre, mental stamina and strength of character not to mention time, a commodity of which I have absolutely fuck all! And emotional energy, another commodity of which I have jack shit. I guess there is always going to be the odd day when I wonder what it would be like if I could stop being quite so badly needed and get my life back.

Then I remember what my Dad’s friend Ken said. Ken looked after his wife, Biddie, when she had dementia. He was just lovely with her and she’d wander off, get confused, be unable to work out where she was. Ask where the children were and he’d say, ‘They’re at home, now come along Biddie, it’s quite alright.’ I once told him I thought he was doing a wonderful job and that I thought he was amazing, the way he looked after her, the way he coped with it and that I was in awe of how he did it because I didn’t think I could.

‘It’s an honour. An honour and a privilege,’ he said.

He got emphysema and his son and daughter came to live in, turn and turn about. At one point, before his wife died, he was very sick and was given the last rites. The next morning he felt better and rang the priest to say thank you! Like Mum is doing for Dad, he held on. He survived Biddie, but not for long.

So that’s my motto for when things get difficult. Be like Ken. And it was Ken’s attitude to Biddie that I aim for, that ability to see her as she had always been when, to the rest of us, she seemed have become someone else.

Mental disabilities are hard. People who have cognitive problems, or who say and do inappropriate things can be hard to love. The parameters in which they operate are not the same as ours, so it’s awkward. Connecting is hard. Sometimes, it’s even dangerous. I confess, it’s not great when you consider it a success if you get away with hugging your father without him groping your arse. But the important thing with dementia is not to give up on the person. They’re still in there, they’ve just lost their ability to process the world through memory and all that is left is emotion, so the trick is to keep them feeling emotionally comfortable – yeh, I know, easier said than done.

Dad is not always very nice to people anymore (understatement of the century) when he panics he gets defensive and sweary. He’s particularly bad in the mornings. He’s never been a morning person and actually, I thoroughly sympathise there, because neither have I. When I wake up in the morning, the first thing I do is get up, wash my face and clean my teeth because, even with an electric toothbrush, cleaning my teeth is one of the most boring things in the world and I like to get it over and done with. And this is the thing with Dad. To look after him, we all have to make the links between the extremes in his behaviour to the norms in our own; to understand, to give it a lot of thought.

Despite being a very social animal, Dad also struggles with a busy house first thing, so he’s not great at having visitors to stay. Indeed, the vilest and most horrible I’ve ever seen him was last Chirstmas, when McOther, McMini and I went to stay with Mum and Dad. There’s a hotel just up the road and I think staying in that might be worth a try in future. But at Christmas most hotels have been booked years in advance, or are closed. At Christmas, it will always have to be round theirs.

Some days, Dad is completely switched on. He knows who I am, he remembers how to have a conversation, more to the point, he can follow one. He pauses and listens when others are speaking and chips in with his own comments. Other days, he shouts that no-one’s paying him any attention. That just means that, today, he can’t follow the thread and is feeling a bit frightened and disorientated, or just a bit left out. His reactions are more childlike as new parts of his brain succumb. It can be hard to find Dad in there, beyond all that effing and blinding, throwing things around. Strangely, while in some respects, there is an element of a two year old throwing a tantrum, with much of it, the main gist is seeking reassurance or trying to hurry things up. So he empties out his cup or clears his plate, but he doesn’t realise that scraping the leavings off it onto the drawing room floor is the wrong way to do that. It gets a reaction and gets everyone’s plates cleared so that’s fine by him, he fails to grasp the gap in his logic.

When Dad is like this, it’s really hard to engage. You don’t want to. You withdraw. You cut off contact. You don’t talk to him because it hurts you. Except that makes it worse. I guess the biggest trick is to remember that while he’s behaving badly to get attention, the reason he is vying for that attention is because he needs reassurance. You have to constantly remind yourself of the dementia sufferer’s humanity, even when they seem to be inhuman. If I chat to Dad and give him lots of attention when I arrive, he is happier and I also end up having far more time to talk to Mum.

A couple of years ago, Mum finally got too exhausted to look after Dad and her health broke down. Waking up and talking him to the loo whenever he needed a wee in the night, every night, for fifteen years had finally taken it’s toll. Lack of sleep and the rigours of living with someone who, essentially, needed the kind of vigilance required to look after a two year old is hard enough when you’re young. When you’re 82 it’s a pretty tall order. I remember talking to my brother, and we felt that Dad was dead and all that was left was this weird shouty stranger who was dragging Mum down, sucking out her life, her energy, the joy in her life. My brother wanted to put Dad in a home but Mum said she’d promised she’d never do that and refused. I stood by her because I wanted her to be OK with herself.

Luckily, I don’t feel that way about Dad anymore, but I’d lay bets that feeling is a natural stage in coming to terms with any brain-damaged loved one. So to anyone reading this who feels that way, chill. It’s normal. Likewise, feeling shit about yourself for feeling that way is, undoubtedly, normal as well. And if you work at the way you are thinking about this, analyse why you feel that way and do your best to work out ways to engage with dementia sufferer on their own terms, it will pass.

Dad can’t understand why Mum no longer looks like this.

While putting Dad in a home would, undeniably, be better for Mum’s physical health, it would be disastrous for her mental health and, at the moment, it would be terrible for Dad, too. Maybe further on, when he doesn’t really realise it’s a home he’s in but not now when he is very aware and wants to stay where he is, with Mum. For all that he is ‘engaged’ to one of the carers and two of the young women who work in the pub, there is still a weird habit of love for Mum. He doesn’t realise he’s old, so he can’t quite understand how they are married, but he does understand that he loves her, even if he has difficulty placing how or why. My brother is probably right. Looking after Dad may well be killing Mum, but it’s what she wants to do and it’s her choice. If she stops living life on her terms, or doing whatever she needs to do to be able to look herself in eye in front of the mirror in the morning, that really will kill her.

However, recently, Dad has been doing some very silly things, like throwing himself on the floor and refusing to get up. I worry that he may hurt himself and then Mum’s whole argument – My friend X put her husband in a home and he didn’t last three weeks – goes by the board. Because if he ends up in hospital and then has to just go somewhere where they have a bed, it would be disastrous. So we need to establish a relationship with a home. One where I think he would be happy if he lobbed himself onto the floor and broke his hip, or if something happened to one of the live in carers and he had to go there for respite. So this last couple of weeks, I picked out a home, a really, really lovely place nearby, took Mum and Dad to visit it and put his name down. It will be a while before his name comes up but at least he’s been there now. I was hoping to look at social days there but he realised it was a rest home, so I think we will have to wait and try that again in a month or two. The idea is, that he gets to know a home then, should he need to go into one, it will be a place with which he is familiar.

Going to see Dad and Mum every week does help me to see the dappled light and shade of Dad’s moods. Sometimes he is on amazingly good form and is unmistakeably my father as I knew him, others, not so much. The thing is, as the disease takes more and more of his brain, you have to work harder to engage. I guess I have come to see him as some kind of Dad-shaped enigma, a puzzle that has to be solved. Sometimes he says,

‘I don’t like you Mary.’

When he does this, I rush over to him, fling my arms round him and say,

‘Nooo! You can’t say that Dad! Because I love you!’

He will then hug me back with all his might, laughing with relief, well, we both laugh with relief at that point. It used to hurt me a lot when he did this to start with, until I learned the hug trick. But now I understand that when he says he doesn’t like me, what he’s really saying is that he’s worried that I don’t like him. He has enough emotional intelligence left to know that while bad behaviour gets him the attention, and therefore the reassurance, he craves, it also upsets people. He’s asking for a different kind of reassurance, but in a defensive, spiky way, and when I give it to him, he relaxes and his bad temper fades. But it’s hard and it takes mental energy. And I watch the carers, because they learn these techniques more quickly than I do, so I can see what they’re going that works best and copy. That side of it must be much harder for my brother because all the carers are women, so he has to work out his own path. I don’t envy him.

Sometimes, when you’re caught up in the admin, the things you need to get and do, it’s easy to forget that Mum and Dad are people; to forget the human element of the logistical problem. It’s not always easy to give them the freedom to make decisions for themselves and I often feel caught in the middle, because I think, being further away, my brother takes it harder than me and is more keen to just sort it out, by putting Dad, or both of them, in a home. The gaps between his visits are longer, therefore, the deterioration in Dad is more obvious, Dad’s behaviour is always at its worst, and techniques that my brother has learned, which are successful one visit, may no longer work on the next. Because I’m lucky enough to live nearer, and visit every week, most of the coping strategies will last longer before new ones need to be found.

Despite spitting on the floor, throwing stuff about, making inappropriate comments and loving the F word above all else, there are times when we do get Dad back, even on the bad days. Just pop on a dvd of Dad’s Army and suddenly we are all laughing together, on the same level. Or sometimes, listening to music, looking at something outside, taking him for a walk, talking about my grandparents, he will suddenly light up and tell a funny story and we will all be laughing as if he was fine.

But that’s the thing I need to get my head round, of course. He is fine. I’m the one with the problem. He’s just disabled.

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