Tag Archives: dementia

This last three months I’ve been mostly …

Putting my dad in a home.

As I may have hinted, things have been extremely tough since Christmas. Dad doesn’t respond to Christmas so well at the best of times – I suspect he is as ambivalent about it as I am – but he excelled himself this year. Mum flipped from being happy to have him at home to admitting that things were too much to deal with in about three weeks. Fair play to my brother for getting us to pick out a home for him because booyacka, we had it lined up. However, Mum needs care too and this home cost the same, per week, as care for the two of them did, at home.

Then, I realised Dad had run out of money. Dad and Mum kept their stocks and shares separate, which is unusual for married couples. As I’d understood it, when Dad’s cash ran out we were supposed to blat through Mum’s. Then when they got down to their last £24,250 each, they’d be eligible for whatever the state sees fit to give. Except it’s a sliding scale so it’s actually their last £18,250 that counts.

However, after an exploration on the Alzheimer’s Society forum I discovered that each person is taken separately. So I got the process in train for Dad. That was OK but the grist of government grinds slow and we knew it would take time.

Time was not really a commodity we had.

Dad reached the point where he was screaming and bellowing in rage all day every day. He didn’t recognise the house he’d lived in for 40 years but thought he lived in Eastbourne somewhere. He was anxious and angry. I am guessing he thought we’d all kidnapped him. He wasn’t even sure who we were. One visit, he was reasonably with it and asked me,

‘Why do you keep calling me Dad?’
‘Would you rather I didn’t?’ I asked.
‘Yes, please.’

After that, I called him by his name; John, until he suddenly recognised me – the trick is not to make them think about recognising you too hard – and called me by my name. Then I knew we were OK and when I called him Dad again, after that, he knew who I was, and more to the point, who he was.

That was the one decent trip. The rest were terrible. Especially the one following it. As well as shouting and railing at people Dad threw things at them, spat at them and cleared his throat and spat on the floor. His entire record collection was torn from the shelves next to his chair and frisbeed, Odd-Job-style at others. Mum had to sit in the kitchen because it just wasn’t safe for her to be with him in the drawing room. At points, even the carers had to leave him alone. He would be shouting commanding them to come to see him and yelling about what horrible people they were to leave him alone. Then, when they did, he’d tell them he didn’t know who they were to fuck off. He didn’t sleep at night for two months and thus it was that we learned how lack of sleep makes a person totally, utterly psychotic.

And so it went on.

Then, the Community Dementia Nurse came to see him for a scheduled visit. She is a star. I explained we were waiting for the slow machinations of the state and was worried about Mum’s well being in the interim. Mum couldn’t bear to see Dad suffer, and felt that if he was miserable at home, he may as well be miserable in a nursing home where he wouldn’t be keeping everyone else up in quite the same way if he started shouting at night. And also, she couldn’t cope with seeing the man she loved and had been married to for 53 years in this kind of mental state 24/7. The community dementia nurse agreed and promptly got the emergency dementia team to come and look at him.

We discussed sectioning, but Mum decided against it on compassionate grounds, because it would involve too much moving him around. They could also take him away for 3 days for respite but we decided that, too, would be unkind because it would just disorientate him more. However, they did get him off the waiting list for a social worker when the duty social worker stepped up and agreed to take him on straight away, in light of the urgency of his case. They also did what is called a cognition test, which he failed, which meant that the lasting power of attorney over his health was activated. I confess, I’ve never been so fucking glad I did anything as I am that we got that power of attorney.

In November 2017, we had a family get together and when we did, we got Dad and Mum to sign the forms for lasting power of attorney over their health. They’d done financial in 2004 when Dad realised he was going nuts. Discussing the health form with Dad, the week before, was one of to the last times I saw him able to grapple with abstract concepts. I am so glad that we sorted it out in time and more to the point, that I got a firm idea what he would want. Also I have to totally commend the government office that does this. I have dyscalculia, filling in forms correctly is my nemesis but they have a helpline and they were brilliant and endlessly patient with my dumb enquiries.

One of the areas where my brother and I are very lucky is that my parents both have a strong faith. Neither of them is afraid of death, or afraid to use the word, ‘death’. No pussy footing around calling it ‘passing away’ because the word ‘death’ is too scary for their ickle wickle sensibilities, they can look it full in the face. Neither of them has ever been afraid to discuss death, their funeral and what they would like to happen to them if they were ill and unable to outline treatment preferences for themselves. Indeed, they have always been keen to ensure my brother and I knew. They are DNR (do not resuscitate) but if you are elderly and wish this carried over into, for example, not being treated if you have Alzheimer’s and contract cancer or the like, you may need someone to have power of attorney over your health if you know they might have to overrule medical professionals, especially if. you want them to carry out your wishes not to be kept alive.

You see, back in the day, the doctors made the decisions. If someone was suffering and weary of life and they got pneumonia, rather than prescribing antibiotics, the doctors might ‘make them comfortable’. They’re not allowed to do this any more. The patient, or the patient’s family, have to make the decision, with their guidance. BUT relatives and family also have to be authorised to make decisions with the relevant Lasting Power of Attorney.

During their visit, the emergency dementia team suggested we check Dad for a urinary tract infection. This we did. He had one, but unfortunately, the only difference it made was that Dad was now more aware when he needed a wee. At the end of that week (and the end of January) I remember dropping McMini off to school one Friday and on the way home, I popped into church, lit four candles; one each for me, my brother, my father and my mother. Then I sat in a quiet corner and cried. I’m not very good at praying and I don’t know exactly what God is, whether it’s an actual entity or just quantum mechanics explained badly to simplistic people a few thousand years ago. But I believe that Jesus was ace and that there is something out there that’s really hard to explain.

Anyway, I just sat there with the situation laid out and asked whatever it is for help. That done, I went home, rang my Mum for a chat and half way through, Dad had a funny turn in the bathroom and the carer called Mum through. I cleared off the line and left them to call the emergency services. A while later I got a call from the paramedic who explained that Dad would be going into hospital for the afternoon as his heart rate was high but that he’d probably be home by the evening.

When Dad got there, it transpired he had a chest infection. He was kept in and given intra-venus antibiotics.

Mum and I had two big questions to discuss.

First, should they treat him? If they’d told us it was pneumonia, we agreed that we’d have asked them to ‘make him comfortable’ but a chest infection is different, he might feel really shit for three weeks and then recover, so he had antibiotics.

We felt that Dad was miserable and not enjoying life any more. While he was behaving like a six year old but clearly enjoying life it was different but now, definitely, he was giving off the vibe that he’d had enough. The biggest one was that he was refusing his medication. If the carers asked him, please, just for me, he’d take it but if they said it was to keep him well he’d refuse. We agreed, with my brother, that there’d be no more heroic medicine for Dad (great phrase isn’t it? This is what things like, giving someone antibiotics to cure pneumonia are called).

All meds that will increase Dad’s quality of life stay but he now takes nothing to prolong it. The doctors at the hospital commended us on this as the most practical, sensible and compassionate path. He is still taking meds to help with his gout, his Alzheimer’s, his sleep etc, things that make him comfortable or make his life easier. Nothing to keep him alive.

The second big question we had to work out while Dad was in hospital was, were we going to have him back home, or were we going to press to get him straight into a decent nursing home from there? In hospital Dad slept lots and while he was still swearing and flailing his arms around when people tried to wash him or put a clean pull up on him, with rest and proper sleep Dad, real Dad, came back to us. He recognised me on sight, knew where he lived and wanted to go home. But if he did return home, then we’d be bouncing him out again to a nursing home. Because he’d soon stop sleeping on home turf, and with the lack of sleep, become completely psychotic again.

After discussing it all with Mum and my brother, we realised we had the opportunity to speed up the system if he went to a home from hospital and it genuinely seemed the kindest course. I told the hospital we could no longer cope with him at home.

He stayed in hospital just under a month while we got his condition assessed, his finances assessed and got everything sorted. Dad is fully funded but as he has a teacher’s pension, he gets little or no actual reduction on his care home fees BUT he does pay the fully funded price, which is about 40% of what he’d pay otherwise. So the horrific prospect of the money running out for Mum’s care within the next six months has been averted temporarily. I reckon we can do a year, possibly two and a lot can happen over that time. Another year and Mum may be happy to move somewhere smaller.

Dad was assessed by a local home, which we wanted him to go into, but was considered too difficult for them to deal with. We had been warned this might happen and so the Social worker explained she’d look for homes with harder-core care facilities.

Mid February, while dealing with all this, I got flu and after five days in bed, while I was creeping about with a chest and sinus infection, we got the call that there was a place for Dad. We were offered two homes, and funded or part-funded places. Something about the way the social worker spoke about one of the homes attracted my attention at once.  I looked at the information about both but the moment I saw the website for that first home, I knew it was a good fit. It was also in the right place, at the back of the local market town, reachable in 20 minutes for Mum. I rang them and they were lovely, which seemed a good sign, but I knew we had to move fast. As it was half term, my brother happened to be staying at the time so he and his little ones and Mum went and looked round. They confirmed that it was every bit as lovely as it looked on the website and the staff every bit as pleasant as they’d seemed on the phone. Also, Dad’s best friend, who died last year, was in there for recuperation after an operation some years ago. His son spoke highly of it.

So we took their fully funded place and Mum and her/Dad’s carer took him down there two weeks ago. It was a while before I threw off the infection and could visit but when I did, it felt like a happy school. There are forty inmates and I’d say all of them were up and about, spread between three rooms. The decor was a little tatty but clearly well looked after. There was a burble of contented conversation and Dad was sitting at a table on his own, quite happy and contented, looking at a tank of fish.

A lady came and cut his hair, apologising that she only had one cape for him to wear because another resident didn’t want to take the other one off! Dad and I chatted to her and that kept him from getting impatient until the very end. I left him about to have lunch. He didn’t bat an eyelid when I went, just waved me a cheery goodbye.

So far, so good. Fingers crossed.

What impressed me most about the home was that they are completely unfazed by Dad’s inappropriate behaviour. When the carer and Mum arrived all the residents were up and about even though many of them are as free of any behavioural filters as Dad. He is so much more relaxed and happy and because of that, he’s so much more with it. And it’s such a weight off knowing he’s there and OK. I hadn’t realised how wound up I was about it all until we got Dad into this place, and I began to relax a bit.

Everyone in there shouts or does odd stuff from time to time because they have Alzheimer’s. When it attacks the frontal lobes of the brain, especially, it can cause the person to become aggressive. And at Dad’s home, this behaviour happens from time to time, but they are really good at dealing with it and settling everyone down again and the attitude is so good. They stop the trouble but they deal with it as if it’s nothing more significant than spilling a glass of water. And that’s the point isn’t it? Because as they’re dementia patients, for them that’s all it is.

Seeing the other residents has been strangely cathartic for us, too. We always tell ourselves that Dad is the same as any other Alzheimer’s sufferer, we are aware that he can’t help it, but sometimes, out there in the world, we still feel responsible. Unacceptable behaviour is still unacceptable, even if the person doing it is not responsible for their own actions. And when it’s your father or your husband, it’s also hurtful sometimes, being told to fuck off. And no matter how strong and calm you try to be, you’re human and this is someone who loves you, it’s still going to hurt.

Likewise, we understand that Dad just has a disability but we still feel the pressure to manage him ‘right’ because to us, these outbursts look like distress. But in the home, with other people all around him who are the same, we realise we are not alone, Dad is not alone and that in many instances, neither he nor they are distressed much either.

Because Alzheimer’s breaks down all the filters, and that’s why many of these outbursts are a lot less dreadful than they might appear, more of a ‘pfft that’s irritating!’ than the cry of existential angst they look like to the rest of us. Anyway, we’ve seen the existential angst: days of shouting from morning to night! Nothing in the home is like that.

I think Dad’s arrival sums it up. Mum and the carer brought him in and a little old dear sitting near the door looked up and smiled at them.

‘Hello,’ said Mum’s carer.
‘Fuck off!’ said the little old dear.

Yeh, Dad fits right in.

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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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Jumbled thoughts on metal detecting, dementia and happiness.

Yep, that’s a hell of a mixture and it isn’t as philosophical as it sounds, this one.

As you know, I go metal detecting, or to put it the correct way, I’m a detectorist. After a very, very long break, I got to go detecting the other day and I found … THINGS.

The ground has been too hard and the crops too high or digs just not … on for a long time. I have wanted to upgrade from my trusty Garrett Ace 250 to a new detector for a year or two. But I wanted one with a display so I could check my ears, so to speak – the ritzy ones give you a numerical scale and if you know your onions you can tell what the metal below you is from the read out. The ones that give you a reliable read out like this, though, tend to be north of a grand. The read out on the Garrett Ace 250 has not, to my knowledge, predicted more than a handful of the metal I’ve dug up with it correctly. So I’ve persevered with the Garrett, because I’d got to know it’s foibles by now, and started saving up for a high end machine.

Meanwhile many of my friends at the clubs I go to suggested I should forget about the display and go on my ears alone because that way, I could buy a high end machine for £800 or thereabouts rather than £1k plus. I wasn’t sure and I waited … until I was at a dig in autumn 17 and I realised that because the display on my Garrett is so random I hadn’t actually looked at it for the whole afternoon I’d been out and hadn’t been using it, while detecting, for some time.

The detector I’d finally decided on was chosen because it’s light and would sell for a good price if I didn’t get on with it. However, that’s the rub. It’s very expensive, even second hand. Bemoaning this, at one of the clubs I go to, one fellow popped up and suggested I forget about the really ritzy one, and the ritzy one’s smaller £800 brother and go for the baby of the brand which is about £600 new, but which you can get second-hand for much less. Then someone else at the club knew someone who had one for £220 and I bit his hand off.

Bearing in mind how incredibly bad I was at getting the hang of the old detector, I wasn’t expecting much so when I first went out with it and found some nice things I was well chuffed! And then I stopped finding … well … anything except old iron and crap. Some of the crap was just luck – when you dig up a bit of copper you might find it’s just a tractor part, or it might be a Roman coin – the only way to tell is to get it out of the ground and have a look. It just so happened that it was tractor parts. It was also getting tiny, tiny fragments of things which were taking ages to find in the freshly dug soil because my pinpointer is a bit dodgy. They could have been beads or medieval fasteners but they weren’t. They were tiny bits of lead.

Bollocks.

Dig after dig went by and I was well aware that most of my failure to find interesting stuff was less about the detector and more down to the plonker waving it about. You know when you’re doing something wrong and you just can’t work out what to do to make it right. I could tell the machine was giving me a lot of information, I just couldn’t work out what the chuff it was  saying. So eventually after going to about 8 digs and failing to find a blummin’ thing, I discovered that one of the detectorist’s suppliers I use had a sheet of hints for setting the thing up. I rang them and the lovely fellow there spoke to me for about thirty minutes and sent the instructions over. That conversation was a bit of a scales from the eyes moment.

The principle of the new (to me) detector – or at least, the technique that works for me – is the exact reverse of the other one. Most machines have three tones, high, low and iron. This one is no different, although sometimes it feels like there are four. The iron on this one is a pulse more than a note, then there appears to be a very occasional low tone a mid tone and a high one on top, but the low tone may just be the way my ears hear one of the high ones mixed in with the iron pulse. So then you trundle round, listening, and it’s like hearing a chord. When it bings, you listen for the tick of the iron tone. If there’s lots it means you’ve got a really big piece of iron, deep down, unless you can turn sideways and swing the detector a different way and it becomes a bing on it’s own with no tick. Then it’s not iron. It might be canslaw, a blob of lead or a brass tractor part, or, worse, a cartridge cap – which gives the exact same signal as a Bronze Age axe head, I’m told – but it is, at least, the kind of metal you’re looking for.

So on the one hand, I was doing it all wrong because I wasn’t listening for the ticking iron tone, so I was only getting half the information. On the other hand, I was doing the right thing digging the signals I was getting because if you leave the distinctive tone of an old shotgun cartridge, you may actually be leaving something … better. So while it’s a pain in the arse as, ever the optimist, I dig them up, I’m actually doing the right thing.

Then came spring, the crops seeded at lightning speed and I didn’t get to test my new detecting theories until the first weekend in August. Then, to my joy, I got to go digging for an afternoon. It was thirty three degrees centrigrade that day (about ninety Fahrenheit) so I was actually quite glad it was only an afternoon.

I arrived just as everyone else was eating their lunch making an ignominious entrance across a stubble field, the freshly cut stalks just that little bit higher than the flat panel underneath my car making a loud screeching sound, like someone running their fingernails down a blackboard, the whole way. I parked, approached the nearest detectorists and apologised profusely. Turned out they were all fed up, the ground wasn’t too hard but the going was hot and the finds and signals few and far between.

Armed with my new machine, and new information, I headed off to detect in the furthest field under a big tree. Surely there had been trees there for many years and I would find something someone had dropped while sitting under it. On the way, I found a bit of the cap of an old bottle, probably from the 1940s or thereabouts. Junk, maybe, but it was a start. I detected around the tree for a while. I could hear the iron buzz most of the time but finally got a proper bing tone on top. Turned sideways and sure enough, managed to reach a point where the bing was on it’s own. Up came half a 14th century thimble with a lovely green patina. This is on my bucket list so even half of one was me set up for the day. With ridiculous optimism, I set about trying to find the other half. I got a shot gun cartridge. Well, you can’t win ‘em all. Next a thing that looked like some kind of silver stud but it was too muddy to tell. Then two signals which I thought were iron and dug to check. They were.

I moved to another field and dug up a piece of old wire and then a THING. The THING looked a bit like a Georgian drawer handle, or possibly a Roman brooch, only not. My fellow detectorists hadn’t been so lucky, many complaining, and one remarking, as we packed up to go, that the only thing he’d found worth keeping were some blackberries! I was dead chuffed with my stuff, but the best thing of all was that I came away realising that I have finally begun to understand the equipment I am using.

As I drove home, delighted with my finds, I wondered if I had really been the only person to find anything good or whether it was more about my standards. The thimble was only half a thimble after all and the Roman brooch-like-probably-drawer-handle-object, which probably wasn’t either, looked ancient but could just have easily have dropped off a Victorian cart or something. The folks out detecting with me were far more experienced. Had finds like mine become junk to them? Possibly.

This got me thinking about life, generally. It seems to me that a lot of the time, happiness is less about what you actually experience and more about how you look at it. I read somewhere that if you get one group of people to sit in a chair and think about exercising – without actually doing any and another group of people to do the same without thinking about running around, the people who think about exercising a lot are 25% fitter than those who don’t. Without actually doing anything. This is the power of the mind and this is why I am always interested in the use of mental techniques in pain management for my knees.

And that got me thinking about happiness. Is the illusive search for happiness nothing more than an exercise in lateral thought? In my own personal experience, I’m beginning to think that maybe it is. There are probably people who, given my life to live, would be a lot more appreciative and happy than I am. Likewise there are probably people who’d be a lot sadder. It’s all about how you look at it. As humans we tend to hear criticism more loudly than praise, the criticism is the stuff that sticks. Likewise, sometimes, I think our preconceptions are that things are a lot worse than they really are. Good things aren’t always newsworthy.

I like to think that I am positive in outlook. I’d say I usually prepare for the worst but I like to think that I also hope for the best. I’ve had to skew my view occasionally, mostly over what I should be able to do versus what is actually possible for someone with my knees, pain management and stuff like that. Has that helped me deal with the situation with my parents? I don’t really know? I’m in my fifties now and I’m starting to see my friends going though horrific shit, their children dying, marriages failing, getting sick … I have no idea how they get through it. I feel a combination of luck, that I have McOther and McMini beside me and rank fear that something will happen to them. But mostly, I’m grateful for them, and nutbag cat and the lunatics I call my family and friends. I’d definitely say I’m happy, overall, even if things that happen do make me sad. And for me I guess the secret is just being interested in what’s going on around me. Is that it? Curiosity? Am I happy because I’m curious? Yeh, yeh, as in enquiring of mind people, the fact I am odd is a given. Is being happy just about looking at everything through rose tinted spectacles?

Or is it that, sometimes, good things seem to appear at the exact moment you need them? Is it a bit of all that, rose tinted but without the delusional aspect? Maybe.

But on good things … this weeks’ visit to the old dears was a gift. On the motorway, stuck in a ‘slow down’ as they call it, a chap in a van next to us beeped at us. I was a bit nonplussed, being, as I am, wizened and ancient and he being a rather glamorous dark haired gentleman in his 20s or so. He waved at me and did a thumbs up, pointing to my car. Then he held up his phone. The screen was black.

‘Uh?’ We said.

He beeped the hooter again, ah yes, the phone was live now and on the tiny screen was a picture of a bright blue car. I’m far too much of a blind old bag to be able to say what it was but I reckon, from the colour, that it was a similar Lotus to mine. Even McMini couldn’t tell and he was on the same side of the car. Mind you, we were all laughing our heads off by this point. We waved and did a thumbs up. People can be real dickheads when you drive a silly car, but sometimes they do mad things like that! It’s all part of the fun and the trick, of course, is to realise that there are probably as many positive things like this as there are negatives. That lateral thought thing again.

On arrival in Sussex. Dad was snoozing and McMini went and sat with him, iPad in hand, to play games and keep him company if he woke up. The lovely Carer cooked lunch and Mum and I went down to the bottom of the garden to pick beans. Then we came back and prepared them. Mum was, mentally, at the top of her game and we had the kind of deep and heartfelt conversation that we haven’t had since the end of 2015. It was fucking magic. I went down there feeling so lonely and came back feeling that I had got Mum back for 40 pure, joyous minutes. We had reconnected, but also it was fantastic to be able to discuss Mum’s life with her and what she wants for her and Dad and confide in her about my own.

And it was brilliant.

After thought …

The Roman brooch-like-probably-drawer-handle-object turned out to be a Roman brooch, just not one from around here. European form, not the Colchester one which, being just near Colchester, I would have been expecting. The stud thing turned out not to be silver at all and was, in fact, a button. Just goes to show that you can never really tell until you clean it all up. The thimble is still a thimble, or at least half of one.

‘Silver stud’ that wasn’t and thimble that was.

 

Roman brooch-like-probably-drawer-handle-object that turned out to be a Roman brooch after all.

 

 

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The days when it drives you crazy! #dementia

Today, I’m going to explain some frustrations about looking after vulnerable elderly family members. Here they are:

  • Masses of frustrating administrivia.
  • The whole thing is a monumental time suck. You’ll find yourself wondering how the fuck they ran their lives before you and the care team came along to do it for them.
  • If you are going to allow the vulnerable person any independence, there will be slip ups. You will not believe how comprehensively they can stuff things up and you will have to do a lot of gatekeeping and/or clearing up.
  • Things will also stuff up randomly with monotonous regularity.
  • You will need to remember a lot of things for them.
  • Keeping them social and independent may involve covert surveillance from the wings, so to speak, so you can fix any bog ups quietly in the background, or at the least, see them coming. That may feel like spying or going behind their back. It isn’t. You’re just supporting them so they can be free for as long as possible. Hold onto that when it gets tough, my lovelies. Because …
  • The gift, or possibly the illusion, that they are running their own affairs (even when they aren’t) is the best thing you can give them. Aim to let the person have as much independence as is humanely possible, for as long as possible because however vulnerable they may be, they are not children, and allowing them to take responsibility for things is great for their confidence if they are supported the right way.
  • You will be amazed how crass people can be when presented with a dementia sufferer.
  • You will be amazed how lovely people can be when presented with a dementia sufferer.
  • There may be times when you feel trapped and cornered by the crushing weight of the responsibility and will wish that you could just run away and never return.
  • Sometimes you’ll wonder if they wouldn’t be better off dead. It doesn’t matter how ableist that is, it’s going to happen especially if one of them has told you, repeatedly, that  they hope they will die, ‘before I lose my marbles. I can handle pain, but I don’t think I could bear that, or knowing how awful it will be for you.’

In short you will have many thoughts that may not be pleasant but try not to beat yourself up because I’d guarantee that most of them are perfectly natural. You have to accept that your negative feelings are as natural as the positive ones. You have to accept yourself and look after yourself as well as them. Because if you go down, everything does!

When it comes to the time, you won’t mind putting the time in, and actually, most days, you’ll feel that it’s an honour. But on other occasions you may be roundly cursing your loved ones, especially if you have to drop everything and sort out whatever mess they’ve got themselves into. It’s nothing to be upset about when that happens so long as you don’t do it in front of them, because you’re human, and there will be times when it and they drive you buggy, no matter how much you love them.

Case in point, this week. It’s has been a bit hectic. Mum has reached the stage when we should really be activating the lasting power of attorney over her finances as well as Dad’s but if we do that, she can’t have a cheque book or bank card and neither can I. Running someone’s day to day finances and shopping needs from over 100 miles away isn’t going to be easy if none of them have access to a cash point and Mum can’t pay for anything by cheque either.

Sure, we can do it, but it will involve transferring hundreds of pounds to my own bank account every week and getting them out, putting them in an envelope and taking them down to my parents’ place. To be honest, I don’t fancy walking about with £500 plus on board, even in my quiet market town. Then, we have to hide the cash at Mum and Dad’s. We can put it in the safe but their having all that cash sloshing about is still not a prospect I relish.

Also even if I did it, what happens when I go away on holiday?

God bless my Mum, she managed to spend nearly £300 on some manure the other day. It’s excellent stuff, but she didn’t really need 36 bags. She used to, because she used to use a lot of it and would pass it on to friends. But not anymore. After that, and other scares, and a brief discussion with the carers we decided we’d hide the cheque book and card in the safe. Needless to say, when I looked in there, I found a bunch of cash I’d put in for emergencies while I was away on holiday a year ago – this was at a point where we were trying to have me bring cash each week and it wasn’t working. Obviously, there were four old tenners, so I had to put the new ones from my wallet in and take the others home where I could go into ‘any bank’ to swap them.

When I got home after three and a half hours of joy round the M25, I rang the fellow who sold her the manure. He wasn’t there so I left a message.

He didn’t call back until the next day and was extremely understanding but couldn’t really do much more than give us a discount and promise not to call again next year. I’ve had at least three bags of his manure, via Mum, so I do know he is legit but it was a pity. He also rang me just as McMini and I were leaving the house and it took us half an hour to sort it out. Half an hour that I didn’t really have.

Having agreed that Mum and Dad would have to keep the manure, but that he’d tear up cheque and I would pay a reduced sum by BACS, the next day, McOther then pointed out that I should wait to pay him until he’d sent the cheque back. Or stop it and then pay him. So then I had to stop the cheque.

However, HSBC’s Indian call centre came up trumps here. They still can’t pronounce the name McGuire but they are now more intuitive. Today I spoke to a lady who stopped the cheque for me and then, when I explained why I was stopping it, she waived the fee. Last time, when I was checking that there wasn’t a standing order pending for an insurance policy on her white goods that Mum had bought and I’d cancelled, the guy put a note on that no standing order should be approved without asking me. A stark contrast to the bastards at NatWest who would only change Mum’s old tenners if I had an account with them. Yes, after the thirty minute delay of the call with the manure man, it took us another fifteen to find a bank in the centre of town who’d swap the stupid tenners. Thank heavens there’s a Santander, where, ironically, I have an account but the teller swapped it all over without even asking if I do.

So the moral of this story appears to be don’t bank with NatWest, they’re a bunch of cAROOOGAHts.

It looks as if the suckers list Mum and Dad are on has just changed hands again and the ‘call blocker’ bastards are phoning every day, along with people ringing to say that the TV/Washing Machine/insert white goods here ‘insurance’ policy is due when there isn’t one. The former are scamming bastards out to rip off the vulnerable. The latter are selling worthless, overpriced services by cold calling people who are on the Telephone Preference Service (which is punishable by a £5k fine) but they are at least legitimate companies with websites and directors registered at Companies House even if their corporate ethics are in a fucking mess.

All of them call themselves something generic which is searched for lots on Google; Home Insurance Services or Call Technology Services, Home Services Limited or the like, things that will ensure any internet search for a record of their existence is buried under pages and pages of results. The other trouble is, if you are kind of person who purchases a suckers list in the first place, you’re not going to worry about selling it on with records that are duff when you’re done. As a result, every three months or so, Mum and Dad get a massive surge of these scam calls and then, as the shit-heads realise there are gatekeepers, the calls fall away until the list is sold on again.

Bastards.

However, I have a plan for the next call blocker selling weasel who phones when I’m at my parents. It’s going to be a gas! I’ll let you know how it goes.

I have a cunning plan … hnur, hnur, hnurrrrr.

 

 

 

 

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And on the up side …

Just a quick one today. First of all, report on Dad. This week he was so much more himself it was unbelievable when I visited. Turned out that after about ten days of not sleeping the doctor came to see him and gave the carers a light sleeping pill. This has worked wonders. Dad had not slept for ages and as you will have gathered from my previous post, he was behaving abominably. I had started to worry as to whether or not he should go into a home. However, all the carers have reassured me that it isn’t necessary, what we have to do, as the changes in his temperament happen, is ensure that Mum spends more time doing other stuff. She needs to get out and away from the atmosphere at home when it’s charged. The time she spends with Dad needs to be batched and in smaller high quality doses.

That all made excellent sense to me, but what I was overjoyed by, was Dad’s return to form. He was saying please and thank you, there was no swearing, no spitting. His continence has improved again so he knows when he needs to go to the loo. His whole outlook is breezier and sunnier. It’s amazing what a little thing like a good night’s sleep does for a person. The carers also raised a good point which was that he is a very intelligent man and his mind needs to be stimulated. Dad loves a trip out and they have combined this with … well … basically they use him, and his wheelchair, as a shopping trolley. He loves this because instead of saying, ‘would you like to go for a walk,’ they can say, ‘John, would you mind coming to town and helping me do the shopping?’.

One of the biggest things about dementia is that it makes people feel useless. Giving them things to do, or finding ways to spin pursuits dementia sufferers enjoy doing as helping others is great for the person’s self esteem. It was so lovely to see Dad back to cracking jokes and taking the piss out of me about my trousers.

‘I must buy you a new pair of trousers. Those ones are terrible.’

‘Thanks Dad.’

It’s amazing how sometimes the answer to a problem that seems insurmountable turns out to be simple. Oh how I wish the rest of my life was that straightforward! I am drowning under a mountain of admin at the moment and every time I finish one thing, another one comes in. All of them are ten minute jobs that go wrong and end up taking hours. But hey ho, it could be so much worse.

Since things are better, I’d like to share one of Dad’s favourite jokes.

The Statues and the Wish

Two statues, male and female, spent a couple of hundred years in a London park, their plinths facing one another. Come rain, or shine they were there and gradually, they fell in love. One day, God turned up and said to them,

‘Righty oh. I’ve seen what’s going on down here and I’d like to give you an hour of life, you can do whatever you like.’

A look of perfect understanding was exchanged between the male and female statues.

‘It’s not just the bastard pigeons either!’ said Churchill. ‘Fucking Banksy!’    *

‘Come on!’ said the male one. He took the female’s hand and they rushed off into the bushes together.

There was a lot of rustling and much giggling. God whistled a tune and nonchalantly made his way to a nearby bench where he sat and enjoyed the sunlight, very much ignoring the continued giggling and rustling from the bushes, while he answered some prayers using the app on his celestial smartphone. He was surprised when, after forty minutes, the two statues emerged from the bushes, breathless, dishevelled and still giggling uncontrollably.

‘Wait a minute, you haven’t used your whole hour yet,’ said God.

‘Really?’ asked the female statue her eyes shining with joy.

‘Really,’ God confirmed. ‘You have another twenty minutes.’

‘Oh good!’ The female statue gave the male a sly look.

‘Shall we do it again?’ he asked her.

‘Yes please!’ she said, ‘Only this time, so it’s fair, why don’t I hold the pigeon and you can shit on it?’

I put this one on because George IV’s horse looks completely gobsmacked. *

* I have no idea who owns these pics, I got them off Pintarest. No infringement of copyright is intended and I will happily remove them if required.

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That’s Alzheimer’s not Dad.

The post is a bit grim but at least this picture is pretty!

A couple of weeks ago, someone shared one of my posts of dementia-related whinging on Facebook – this post if anyone’s interested – and it got an interesting comment.

There is ample opportunity for me to have misconstrued here but, as I interpreted the comment, I think it basically said something along the lines of that we don’t really know why some folks get to die suddenly or well and others get something a bit more operatic; by which I mean they get the real world equivalent of twenty minutes of singing and an encore after a wound that should have killed them instantly. The gist was that ours is not to reason why.

The poster went on to say, if I’ve understood correctly, that if it was God’s will that they linger who are we to argue, and to just have faith that it’s all happening for a reason, that it is not our place to judge or begrudge them their time in the twilight zone, and we can give them that time. That this process of slowly withdrawing from one world and preparing to step into the other is clearly of spiritual importance in some way and we should accept our part in it with grace. Thinking about it, I should probably post what was said. This is the comment in question.

It’s a kindly, wise comment and clearly meant to give comfort but instead, reading it, I feel as if I am being chided for my lack of faith, and for my selfishness in feeling that fourteen years of this is a tad fucking long. I found myself wondering how much of the poster’s own care/worry marathon they had completed, two years? five years? seven? ten? I’ve reached the stage, now, where I worry that the pressure of worrying about my folks may do me in; that I may not out live my parents. I mean, I can’t die! It would kill them. Then there’s the whole cancer thing. Have you noticed how many people who have been through a tough patch like this one end up going down with cancer just as they get right again? I dearly hope I avoid joining them.

Clearly the commenter has a great deal more grace and faith than I, but I confess, the thing about the comment that really threw me was that I had no idea that anyone could so completely and utterly miss the point of why I post all this stuff.

Bearing that in mind, I thought I’d better explain to clear things up! Because I accept my father’s fate is clearly not a swift and merciful death, trust me, there is no mercy in dementia. Indeed, if this is the greatest mercy they can wish for I shudder to think on the horror of any alternatives my parents have missed. Likewise, if they have to suffer this now I hope they have manifold blessings in store. My father has been losing his memory the whole of my son’s life. Even when my lad was born in 2008, Dad couldn’t really be left alone. It began before that, in 2004. Fourteen years is a fuck of a long time in anybody’s book. It’s probably my fault and I’m the one being punished. I expect I snogged too many boys or wanked too much as a teenager or something, but I digress.

It’s no good my railing against fate, it merely wastes energy. I just have to bite the bullet and get on with it. I will endeavour to give my parents as much quality of life and freedom of choice as possible, and I am trying to make this twilight time for them a time of gentleness, peace and compassion. That my brother and I aim to do that, however painful it may be for all of us, is moot.

But you know what? Just because my brother and I are doing what we hope is the right thing, it doesn’t make it any more fun. And I doubt the feelings I have experienced as I’ve watched my father lose his mind over fourteen long years are any different to those of other people in my position. And that’s why I write about this.

When I write about Dad’s sickness on my blog, it isn’t about my brother and I doing the right thing by our parents, it’s not even about our efforts at trying to. That’s a given.

No.

This is about what tenderness and mercy to one member of a family costs the others.

Similarly, I doubt the dismay I felt as I realised, three years ago, that my mother also had dementia, is unique. If there is anything merciful in this perhaps it’s Mum’s dementia. Because I do not know how she finds the strength to endure some of the stuff Dad says to her and at least if she forgets, she won’t know what she’s lost.

The posts I write about my father’s Alzheimer’s and my mother’s dementia are not here to give you answers, they’re here to show you my reactions. Because I think I’m very average and I suspect most of us feel the way I do but may not admit it, not even to ourselves. Well if that’s you, I’m writing this so you can see that your reactions are normal. The things you think about the situation that are so dodgy and shameful that they almost hurt? You aren’t alone.

That’s the only gift I can give to people suffering through this. Thousands of people have come before us, doubtless many thousands will come after. You’re not alone, I’m not alone, we are united in this trouble.

When the dementia patent in your life does something that completely shocks and repulses you, it’s OK to recoil, to feel sad, hurt, horrified and angry. It’s OK to feel those things because it’s natural, and yes, it’s OK to feel trapped by their neediness. The key is not how you feel but how you act when you are with the person affected, the key is not whether you are disgusted but whether you show it. They no longer understand or even realise that their actions are unacceptable. Much of what they are doing is caused by them feeling frightened and alone, you can reduce the number of melt downs, if you can get alongside them and have them working with you not at you, but if you fail, well that’s OK, because there’s always next time, when you can try something else.

Showers, but also sunny intervals.

Also, attitudes to dementia are changing and I write about things that happen to us which reflect that change because I want people to see it and know about it. I want people to realise that if they want to take a dementia sufferer out somewhere they should go right ahead. It’s just a disability. You don’t have to hide them like a shameful thing but at the same time, you need to have an idea of what you are all facing. I describe our journey to help you understand what is coming as you embark on yours.

When I was a kid, if someone got Dementia it usually went something like this. Person gets dementia. No-one is allowed to know it’s all kept secret because it’s a Bad Thing. Person does something a bit strange in public which a handful of folks hear about but which is not ever passed on but is just mentioned as, ‘that time at …’ or something similar. Person disappears from all social life. Five years later, you attend their funeral. I used to wonder what happened in between. Now I know. And I want other people to know and understand. That, yes, it is horrible, but it can also be uplifting. I want people to know that they needn’t feel afraid, that it is unbelievably harsh but they will cope.

While Dad can still enjoy the company of others – and he can most days – I want my dad to be active and social. To be able to go out and Mum with him. I want him to be able to go have lunch at the pub or whatever. Amazingly, they attend a huge number of social events but it is getting more and more difficult now. Bless them, a decent number of his friends now come to him, or if they’re no longer mobile, ring him.

As I said, attitudes are changing, although it takes a certain brazenness to be a carer. For example, back in 2011 when we were on the ferry to the Isle of Wight. Dad went to the loo and got a bit disorientated while he was in there. He came out with his zip open and his cock out. A lady sitting nearby rushed over to him, just as I noticed and ran over to him, too.
‘Oh thank you, I’m so sorry,’ I told her when I got there.
‘Is he yours?’ she said.
‘Yes,’ I said as I turned to Dad. ‘Dad, we need to pop back in there for a moment.’
‘Oh dear, do we?’
‘Yes,’ I leaned over and whispered, ‘You’ve forgotten to do your flies up.’
He guffawed and we thanked the lady and went back into the loo.
‘What am I coming to? I left my cock out,’ he said when we got inside. We giggled some more and he made some joke about Winston Churchill’s reaction when someone pointed out his flies were undone, ‘The dead bird does not leave the nest!’ my Dad said in his best Churchill voice. Giggling, we sorted it all out and we started back to our seats. We passed the helpful Lady so I thanked her again. She gave me a big smile and said,
‘Not to worry, we have one of our own at home!’
It was all done with a wink and a smile at Dad, too, to include him. Naturally he joined in. People are kind these days, when you rock up somewhere with a dementia sufferer.

Likewise, when your father clears his throat, leans over the side of the chair and gobs a massive steaming greenie onto the kitchen floor in front of company, as if that is the most normal thing in the world, a certain brazenness is required. I reckon it’s fine to use graveyard humour to make light of it, or any other form of tasteless joke that will get you through the surreal horror you’ve just witnessed. We avoid jokes at Dad’s expense in his presence and we avoid them where we can if we are not in his presence. However, if treating your father with the decency and compassion his humanity affords him to his face means laughing at his child like antics, and calling him Spoilt Bastard after the well known Viz character behind his back, I say knock yourself out. Because if you can’t do both then do what it takes behind the scenes to achieve compassion and kindness where it matters, when you’re with the person.

Recently, a couple of visits have gone badly and my father has been unremittingly vile to me, not to mention Mum. Some days, he doesn’t know who we are any more. He doesn’t remember that he loves us. Except that he is always pleased to see me initially. However, my gentle, good-humoured, loving father – with the wicked sense of humour – is now, quite often, just wicked. He refers to me as a trollop, or a fucking stupid woman, or sometimes, for variety, a stupid fucking woman. I take no offence since he refers to nearly all the females around him like this.

But I miss my dad. I miss my mum. There is much more of Mum there but we have still lost enough to miss. Dad, is still there too, but we have to dig hard for those precious shiny glimpses of treasure. And I’m raw about it at the moment because at my Uncle’s funeral last week we prayed for the sick and when we did that we prayed for Dad and Mum. And it was the sweetest, kindest thought, a truly lovely act on their part, and so touching, and I nearly lost it, and I realised how much grief there is; an enormous, bottomless black pit of the stuff at the centre of me. Too much to look at head on. Too much to acknowledge. I can see it all the time out of the corner of my eye. Look it in the face and I am undone. And as the male lead says in one of my books, ‘I can’t be undone.’ For the sake of my parents and also the rest of my family, I have to hold it together.

And the weird thing is that even with this huge bottomless grief, this mourning that will end in death, but which, without a death, cannot end, even though it’s fourteen years old and huge and dwarfs me somehow, I do hold it together. If I have any kind of faith, I suspect that’s where it counts. Because I’m no saint. I have no grace. I’ve never been one to cope well with a long drawn out process. I do not know how I keep my grief about my parents in its box, but it happens, and I doubt the strength required is all coming from me.

In the face of this, I’ve come to believe that there are really only two things that matter when dealing with dementia:

Number one. Trying to hang onto who the patient was and what it was in him we loved. We look out old photos, read letters, memories from the boys and girls he taught. We do whatever it takes to keep in touch with the real person who is living under that disability. We do it because it’s the only thing we can do to hold onto him.

Two. On the days when Dad is vile to me; like the time when he grabbed the wee bottle from my hand on Sunday and tried to throw his warm piss in my face, shouting, ‘Get that thing off me you bloody trollop! I’ve finished, you stupid fucking woman!’ Or yesterday when he did the same thing to the carer in the loo, all the while continuing to wee copiously down his trousers and onto her foot, proving conclusively that he was NOT finished, not by a long chalk, it’s important to keep a sense of humour; to laugh about it – and we did laugh because what else can you do? I mean, it could be worse, it’s not as if I had to hide behind the sofa while he searched for me with a knife (genuine dementia story, luckily, not mine). It’s also important I keep a firm enough grasp of who he is. I will always try to treat him as the man he was. Dad is in there, somewhere. I refuse to believe he is wholly the man he’s become. Because that is not my father. That is Alzheimer’s.

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