Tag Archives: alzheimer’s

This week, I am mostly, cheating!

Greetings, late as ever. I appreciate that this is a late post. I knew things were going to get a bit hectic and sure enough they have. I had to set up McMini’s computer for school and it took approximately one thousand years. OK not quite one thousand but it felt like that, especially when I had bloody microsoft asking me to sign in and then saying ‘oops there seems to be a problem.’

After searching for what felt like fucking aeons, I realised that the problem was simply that McMini is under age and therefore I had to sign in as me to move windows from some crappy version, where you can’t download anything off the Microsoft app store, to normal windows that everyone else uses. As a result I have nothing to witty to blog this week and had to resort to Things I Have In Reserve, in this case, my Dad’s Eulogy.

It might seem like a strange thing to share, but it was written for laughs and it even got some! Next week, I have some absolutely chuffing amazing news for you! In the meantime … enjoy …

________________________________

Dad post retirement but pre dementia.

The difficulty talking about Dad is that I have so much material, so it’s tricky to know where to begin and when to stop. The fact his nick name, at the school, was ‘Johnny the Legend’ probably says it all.

I’ve made some notes.

Obviously, as his daughter, I’m biased and see him as a shining example of what it means to be human, and a Christian, and to do Christianity and humaning really well. There are certain words that crop up again and again in the letters and cards we received; Gentleman, kind, warm, radiant, humour/joie de vivre, fun, funny, witty, generous, non-judgemental, wise, humanity and a word he used about others but which also very much applied to Dad, himself, effervescent! Dad lived his whole life with an aura of intelligent enquiry and seemed, to me, to have a genuine interest in everything and everyone around him. He also had a sense of fun and mischief but coupled with a sense of social justice and a kindly disposition which meant the mischief was never cruel. He was genial and good humoured and would often tell stories against himself if he believed his antics were funny enough. Probably one of the most indicative things about Dad, and Mum, is the friends they made and the people they have around them. They seem to be pied pipers of lovely people.

Dad delighted in sharing the Latin and Greek roots of words, especially if they were slightly dodgy or a little bit lavatorial. I can still decline the latin verb from which we get the word, ‘constipation’. Despite being a committed Christian, Dad would sometimes take me aside after church and we would both giggle as he pointed out the double entendres which Victorian poets, in a more innocent age, had unwittingly put into that Sunday’s hymns. ‘Oh Lamb of God, I come,’ was a particular favourite, and the fact it was written by an ancestor on my Mum’s side just made it even funnier.

He loved to prick the bubble of the self-important and was proud of any signs of rebellion in my brother and I. He once hauled a colleague to the window of the master’s common room and, glowing with proprietorial, that’s-my-boy pride pointed out a scene in the quad below, where a member of staff who ran like the original Minister for Silly Walks was sprinting across the grass followed by my brother doing a near perfect impression of the man’s ridiculous run a few yards behind. Another time, I remember Dad carrying a copy of the unofficial school newspaper round one speech day and, when he met the right parent or colleague, he would whip it out of his inside jacket pocket, like some war time black-marketeer selling stockings, to show them a slightly scurrilous cartoon I’d drawn of the Bursar.

Life with Dad was never dull. He was always cheerful and sociable. He enjoyed entertaining friends and relations during the holidays and would wear his bedroom slippers ‘to make it more relaxing’ often prank phone calls would be made to other, absent, members of staff, or those who’d moved on to better things at other schools. Sometimes he would invite people round and forget so Mum would be surprised and delighted to see them arrive but have to pretend that she knew they were coming. She, and we, usually pulled this off, except for the time my uncle and aunt turned up and found the four of us sitting down to a grilled trout each.

Dad was, as he would have put it, ‘a good trencherman’. On holiday France Dad demonstrated that, were he ever to go on Mastermind, his special subject would be not classics but instead, Guide Michelin, Normandy edition. As we drove through some village he’d suddenly stop the car and announce that it was lunch time because the auberge had a red underlining. No-one I’ve ever met before or since could sniff out a good restaurant as surely as Dad.

He also enjoyed wine, although, in that respect he was quite a long suffering father, luckily he had a very forgiving nature. I remember I inadvertently drank one of his best bottles while he was away on holiday. ‘What? You drank my Gevrey?’ he cried, his expression a mix of horror and disbelief at my iniquity in drinking his wine and pride that I’d made such a quality choice. Luckily pride won out although I did replace the bottle as soon as I could. I also remember spilling mayonnaise all over him at a restaurant in Durham when we were having a meal to celebrate Giles’ graduation. There was complete silence and, again, Dad’s face was a mixture – of anger and humour, this time. For a few seconds we watched the two emotions battle for control. God bless Lil, who guffawed before she could stop herself, Dad’s habitual good humour reasserted itself immediately and all was well.

I’ve already alluded to Dad’s selective memory. Any timely attendance at social events was due to Mum’s insistence that he put them on the kitchen calendar … also, most friends were wise enough to ensure she knew about them. The odd one or two slipped through the net though. I remember in my last year at school, Dad had just left the house and was commuting in daily from home. One evening, I found him, Mum and two friends wandering disconsolately through the cloisters in their dinner suits having arrived at the common room guest night a week early. This was a particularly spectacular achievement since Dad was chairman of the common room at the time and, therefore, the person responsible for organising it.

A familiar refrain in our house when I was growing up was the phrase, ‘have you seen my biro?’ Dad had two Papermate biros: there was a red one, which with Dad’s characteristic fuzzy logic, contained black ink, and a turquoise one which contained red ink. The hunt was on for one or other of them (and his keys) most of the time. Finally, he lost the red one, apparently forever, so I bought him a new one for his birthday, a top of the range black and gold Papermate. Yes, from now on the ‘black’ biro was going to BE black. I was incredibly proud when he hung onto it for years, although it turned out it was several biros. He couldn’t bear to upset me by admitting he’d lost my gift, so he kept buying replacements. It was only after he tried to buy replacement number five and he discovered Papermate had discontinued that model that he was forced to come clean. It was typical of Dad’s kindness. He was a soft old thing. He used to hug the cat goodbye before work in the mornings. She always smelled of aftershave at the start of the day.

For all Dad’s legendary forgetfulness, though, the headmaster’s secretary once told Mum that he was the one housemaster she could always rely on for an instant answer to any question asked about any of his charges. There was no filing system, no having to look things up. He always remembered the things that mattered.

One more instance of fuzzy logic. One summer night we left our pet rabbit in his outside run which had shade but very little shelter. Mum was the first to realise when she was awoken by a rumble of thunder.

‘Darling! There’s a storm coming and the rabbit’s still out!’ she cried and Dad went out to rescue him.

Mum heard the door go just as it began to chuck it down with rain. She ran to the window to see Dad rush into the orchard, completely starkers, barring a pair of wellies, grab the rabbit and take him, through the pouring rain to his more permanent home in the garage.

‘I didn’t want to get my pyjamas wet,’ he explained when Mum asked what on earth he was doing.

Dad was a committed Christian with a deep and enduring faith. Interestingly, his efforts to be Christ-like in every aspect of his behaviour could make him come up as a bit of a maverick – which suggests he may have been doing it properly.

Dad had a very firm idea of right and wrong and, as it was governed by his faith, it didn’t necessarily involve proceeding as convention, or the rules, dictated. Luckily most of the people he encountered appreciated this, even if his tendency to take the same approach at work, coupled with a propensity to forget housemaster’s meetings frustrated some of his bosses. Neither tendency let up after he retired.

One evening he and Mum got talking to a homeless man in the churchyard and brought him home to spend the night. Mum, rang me and explained that if I hadn’t heard from them by half nine the following morning I must call the police as they would probably have been murdered. She put the phone down with the parting shot, ‘Don’t tell your brother darling, he’ll go into orbit.’ Mum and Dad were a team and as you can tell from this story, it was definitely a case of six of one and half a dozen of the other.

One of Dad’s maxims was,

‘Never let anyone see you’re shocked by anything, most of the time, it’s what they want.’

Dad was pretty good at not being shocked especially by some of my more punk friends not to mention us, his own kids. I remember his reaction after I attended my first party. Unfortunately I mistook the fruit punch for a non alcoholic beverage. By the time I realised my mistake I’d downed gallons of the stuff and I was terribly ill. The next day, I felt truly awful and spent the time very quietly in my bedroom. When supper time arrived, I came downstairs and Dad said,

‘I thought we could have a treat tonight, I’ve made some wine cup.’

I have no idea how he did it but Dad had managed to replicate the exact same punch that I’d drunk to such horrific excess the night before. I sunk two glasses with a heaving stomach and a thin pretence of enjoyment. It was a much more salutary lesson than any lecture on the evils of drink. Fizzy logic, perhaps, in that case, but no less effective.

Dad was also great at understanding the way other people thought. A naughty friend of mine told how, when about to be cautioned by the police for some argy-bargy at the Goldstone, Dad stopped him just before he went in and said,

‘Now listen, Duncan, there’s one thing you have to remember and it’s very important.’

‘Yes Mr Bell?’

‘Yes, whatever you do, DON’T laugh! It’s yes sir, no sir, thank you sir and out again. No backchat, and NO arguing the toss. Right?’

My friend confessed that, the moment he was confronted with the police officer cautioning him, he was indeed, seized with an urge to guffaw or make sarcastic comment, but he managed to contain himself because of what Dad had said.

Dad wasn’t afraid to be human if, by venting occasionally over something small, he could be better at something bigger and more important. I remember him mowing the orchard at home. The lowest branches of the trees were all about four feet off the ground. As Dad mowed he was watching the grass in front of him so he bashed his head on pretty much every single tree. Each bump was greeted with an ever lengthier flow of invective, mostly comprising the word, ‘bugger!’ It lead to a new family measurement scale of vexation, ‘how manyb’uggers was that, Dad?’ we’d ask after a particularly vexatious escapade doing something or other.

Dad told me that he’d wanted to be a teacher for as long as he could remember. To be honest, if you grew up around him while he was going about his job it was fairly obvious. He was extremely dedicated, but even when he had retired, even when he had Alzheimer’s, children still flocked to him to chat.

His pet advice on housemastering was, ‘It’s not about catching the boys it’s about knowing when NOT to catch them.’ I only found that out recently, which is probably why it was many years before I realised that, when he came home to regale us with something funny he’d caught the boys doing, they didn’t actually KNOW. The famous Johnny Bell warning cough made sure of this, unless they were seriously up to no good, in which case Dad would omit the cough and attempt to catch them. He allowed some slack but had a zero tolerance policy for bullying. I remember him agonising when he had to send boys to the headmaster for drinking, smoking, going awol or the like, but if they’d been bullying people he never had a qualm about having them expelled, which was entirely in keeping with his sense of right and wrong and social justice.

One of the greatest gifts Dad taught me was that, if you want to be happy in life, it’s essential to be able to laugh at yourself. He had a way of being self depreciating and using humour to keep things light without losing the message. His humour also helped him keep things in proportion, in a way that not everyone can. Perhaps that accounted for some of his courage when facing the grimness of Alzheimer’s. Wherever he is now there will be light and laughter.

In the classroom, too, Dad liked to allow space among the learning to enjoy a bit of levity. His pupils soon realised that you could have a far more interesting Greek lesson if you got Dad onto some off the wall topic after about five minutes. He got decent enough results, so it seems to have worked. Even after he’d retired, Dad’s one-to-one students knew to ask about his most recent holiday if they wanted a break. At school, the lateral and inventive nature of Dad’s red herrings was so famed that they were featured in an article in the school magazine, which amused Dad greatly. I have a photocopy of that article which I’ve included, below.

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The end

on top of a Down for a while

So here we are … it’s official. I’m a demi-orphan. Dad died, peacefully, just before eleven am on Saturday 25th May. My brother and I were on separate sides of the M25. My mother was holding his hand. In those last two weeks I had two visits to Dad where there was so much love.  He seemed way more lucid too, as if being too weak to speak very much had given him back some brain power to compute the world around him. And after he’d had the last rights he was totally content, peaceful and unafraid.

Dad stopped eating. People with Alzheimer’s do this but when it happened, in April, I was away. I returned form holiday in late April to dire stories from Mum of how thin and ill he looked. Before I visited him, I asked the lady who ran the home about it. She explained that his refusal of food was, indeed, a standard Alzheimer’s symptom. I asked her if this was the end game. She told me that it depended. Dad was frightened to try and stand, he feared he’d fall, so his rehabilitation wasn’t going so well and that meant, ‘some young whippersnapper’ (her words) did everything for him, dressed him carried him … everything. The only thing he had any control over, she explained was whether he said yes or no to food and drink.

So it was about control.

‘How long does this stage go on for?’
‘How long is a piece of string?’ she replied.

She went on to explain that, while it was hard to ascertain the exact motives, at this stage of Alzheimer’s there were three reasons people stopped eating; they’d forgotten how, it was the only thing they could control, yes or no to food, or they’d had enough.

‘It’s very difficult to say but I think your Dad falls into the third group.’

She explained that both she and the doctor who had come out to see him believed it was about leaving. That Dad had simply had enough of this life and wanted to go on to the next one. I asked what I could do and she said bring things he likes for him to eat, so I bought jelly babies, wine gums and Turkish delight for the next visit – three great favourites.

He was pretty dogged, continuing to starve himself for the next few weeks with the odd break where the temptation to eat ice cream clearly became too much for him. During that time I want to see him every week; a bad visit, a pretty good visit when we did silly waves goodbye and I left him laughing and then a completely wonderful one, where I sat next to him in the lounge and recalled stuff my brother and I had done. It was like talking to someone who was half asleep, he was very weak and couldn’t raise his head, so I angled mine down so our eyes could meet. I told him what his grandchildren were up to, my lad and the others, and he smiled and chuckled, and projected this amazing aura of love. There were points where he fell asleep and I sat back and gazed out of the window, at the downs and Cissbury ring but the love thing remained. Then he’d wake up and I’d start recalling stuff again.

I’m a bit mithered about what I’ve told you but I think I mentioned that one visit was very bad, the first after my holiday. Dad told me to go away, so I held his hand and explained that he had a daughter and it was me. He changed then and was happy to let me hold his hand but there was still no response from him. It was difficult to get the measure of this new unresponsive Dad so in the end, I got out my phone, and Gutenberg, and looked up a book he used to read my brother and I at bed time, The Fierce Bad Rabbit by Beatrix Potter. I read it to him.

Dad made no sign of enjoyment but Maurice, next to him, clearly loved it. And next to Maurice was a gentleman sitting very straight with his hands on his knees staring into space. I wasn’t sure if he’d heard or not, until that good visit, near the end, with the gaps where Dad nodded off. In one of the gaps I sat back and looked over at the fellow who was sitting straight up. He was staring straight at me and then, very slowly he raised his hand and gave me a thumbs up. I don’t know what his condition was, so I’ve no idea if he was a simple Alzheimer’s sufferer saying hi or someone who fully understood how hard that previous visit had been and was giving me encouragement. Whatever it was, it brought a bit of a lump to my throat for some reason. I gave him a big smile and a thumbs up back, then Dad woke up again and we carried on.

Five days after that visit, on the Monday, is when I got the first call for the deathbed scramble I described in my previous post. Dad got the last rites, which we knew was important to him, and I felt that I was incredibly lucky that I got to say goodbye with ADBA even if it was three days beyond that before Dad actually left us. Strangely, that feeling of connection I described with Dad didn’t actually go, it stayed there, quietly in the background.

On the Friday, I got a call from Mum saying they didn’t think Dad would last long. I confess I cried on the phone and told her that I couldn’t make it that night. I prayed, sort of, only to Dad, trying to send him love and good thoughts and explain that I’d see him the following morning. McMini hadn’t seen me for four days, then, when I’d finally returned home on the Thursday, McOther was out. He begged me to stay Friday so we could have a family evening together and go to Sussex on the Saturday morning. I’d already said goodbye to Dad so any thoughts of going to Sussex that night evaporated and I agreed.

That Friday night I got a message on the carers’ chat group. Mum had rung one of the carers, worried that Dad would die when she wasn’t there. The home were brilliant and had promised us that when he became really bad there would be someone with him round the clock. They’d also told me we could go any time. The carer said she’d reassured Mum but a little while later, at half eleven, she rang me, in tears. She and her Mum were the original carers. The team has grown over the years but to start with, back in 2012? 2013? It was just the mother and then, shortly afterwards, the two of them. She loved Dad like he was her own father, people tended to do that when they were around him for long, and she explained that she felt as if she hadn’t said her goodbyes to Dad. I told her how the home had said we were welcome to go see Dad any time and said that if there was anything she needed to say to him, to go then. I told her I’d ring the home and let them know she was coming.

A few minutes later she pinged me a text to say she and her mum were going over.

I slept fitfully that night and the next morning, received a message on the carers’ WhatsApp group at about half six. The mother and daughter team who’d gone to visit Dad the night before had stayed with him, chatting and sleeping fitfully all night. They knew it was what Mum would have done if she’d had the strength and it was an act of such complete and utter love on their part which still humbles me.

They were texting to say they were leaving. They said he was able to do a half smile when they shared funny stories, so they knew he realised they were there. By half eight while McOther was out at the shops, I got another call from the home to say Dad only had a few hours left and that someone should come. I rang Mum and told her I’d put out a call on WhatsApp and it’d be the first person who answered.

The younger of the two ladies who’d been with him all night popped up and took her in.

My brother was on his way, I left as soon as McOther came home from the shops.

When Dad died I was on the four lane bit of the M25. No stopping and the traffic though slow, was moving. Thanks to our lovely carers, Mum was sitting next to him, holding his hand. The local vicar missed him, there was some huge Christian festival which blocked all the roads for miles around and she couldn’t get there in time but she said some prayers after he’d died.

Something happened, I’m not sure if it was just after or just before I got the call about him dying, I honestly don’t recall, but the feeling of connection, of love that I’d felt the at the last visit and the Wednesday before … that was still there and I was kind of praying to him I suppose. This is difficult to explain but basically I was thinking about him really hard in the hope that I could somehow send enough love out through the ether for it to reach him and for him to know where it came from.

As I thought about Dad, and tried to send him love from afar, I had this weird kind of out-of-body. I was looking at the roof of the home he was in, like the satellite picture only it was in much higher definition, receding fast, as if I was flying upwards at speed. There was a sense of freedom and unbelievable  joy. In no time, the viewpoint was high above the downs, flying along side of them towards Truleigh Hill. I could see the blue of the sky, the yellow and white of the flowers in the meadows below, I could hear the larks, drink in the sunlit green of the hills and blue of the sea. All the while, my heart was bursting with love and joy at the beauty and wonder of it all, at the sheer delight of existence, of a life well lived, of gratitude at the loveliness of the people surrounding me and the love and happiness I enjoyed, and I was filled with it, too. It was a bit like that feeling you get when you come off the best fairground ride ever and you’re thinking,

‘Blimey! That was a blast. I must do it again.’

Except it was a million times better. It was pretty fucking extraordinary. Because I was sort of feeling it as if it was me, but also feeling it with someone else; their feelings, being shown. And I may be nuts to say this, and I’m definitely laying myself open saying it in a public place but it felt as if, somehow, my efforts to connect to Dad had succeeded, as if those were his last conscious thoughts.

After it was gone, the traffic slowed more and I had to contend with the bell ends in the van behind me who were so close I couldn’t see their headlights. Clearly my decision to leave a 20 yard stopping distance, crying my eyes out as I was, my vision blurry with tears, offended them. But I was unable to stop and blurb properly because you can’t on that bit and I didn’t fancy sitting up the arse of the car in front while visually impaired! I gave them a brakes test and they backed off.

Back in Sussex, the people at the home washed and dressed my dad, and laid him out with a palm cross in his hands. Another act of humanity and love.

See you later Dad.

Back on the M25 I tried to reimagine the experience I’d just had, the connection, the joy, but I couldn’t make it feel the same. It wasn’t just because you can never quite recreate the impact of something like that a second time, but also because it didn’t feel as if it had come from me. It felt as if it had come into my mind from outside. Maybe those were my father’s last conscious thoughts.

Later, when I returned to register Dad’s death, I went to see his body. All I could think of was that bit in whichever gospel it is when the women go to look in the tomb to embalm Jesus and there’s some bloke is in there who basically says,

‘Why are you looking for him in here among the dead? Fuck off back to where he is; with the living.’

A good death then.

The connection? Still there. Quietly, in the background, giving me strength.

Death Is Nothing At All

By Henry Scott-Holland

Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Nothing has happened.

Everything remains exactly as it was.
I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.

Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.

Life means all that it ever meant.
It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?

Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval,
somewhere very near,
just round the corner.

All is well.
Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again

Source: https://www.familyfriendpoems.com/poem/death-is-nothing-at-all-by-henry-scott-holland

This poem was read at Dad’s funeral and shortly afterwards, one of the lovely people on my mailing list sent it to me, which rather heartened me as I must be collecting a group of the right kind of people!

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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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