There may be trouble ahead … #dementia

This week I was going to give you the results of the title poll and show you the new covers and blurbs for my series. But now I have to make chocolate cakes for McMini to sell to unsuspecting victims passers by to try and raise cash for a class outing after their SATS exams are over, so this has to be a brain dump rather than the kind of post I think about.

It’s a bit of a living parable of the talents this. McMini and three friends have been given five pounds to buy stuff to sell, but there are only two in action today and the one with the five pounds isn’t coming so it appears that I must buy the plastic cups and local friend’s mum must stump up for the drinks. There is no publicity material, none of the little darlings has thought to do posters or even price tags … or even about what they are selling. Never mind. We shall see what we can do. The weather is perking up a bit so it may work out quite well. Especially if I end up taking a tray of cakes to the market and haranguing passers buy until they buy one, like some ancient disabled Apprentice contestant. Here’s hoping.

Anyway, when it comes to brain barf the topic at the forefront of my mind is, as usual, Dad.

Dad’s been a bit low the last couple of weeks and it’s been tough. I may have hinted at that.

The thing is, when I went on holiday, I left Dad cheerfully demented, living in the home and convinced, successfully, that his station there was temporary. Unfortunately, he’s become very scared of falling – this may be due to the fact that he kind of collapsed, back in February. That was how he ended up in hospital. So he may have some kind of memory of that. As a result he can’t walk at all and we can’t lift him, which means it’s difficult to take him out, although I guess if they put him into the car, we could take him for a drive. I’ll have to have a think about that. But even if they do, if something happens, it’s very hard for us to get him out so it still makes going for a drive tricky.

It’s strange how people with dementia do remember some things, or hold on to echoes. Case in point my mum. Mum only has a light dose but where it gets her is she will have a bad – or good – experience doing something she regularly does and from then on, conflate doing that thing with it being bad (or good). More on that story … later. Back to Dad.

When I left to go on holiday, early April, Dad was chirpy. He called my name as I walked into the home and as I was having a meeting with the home manager, social worker and some others, I had to go into the office but I popped over and told him that I just had to go to the loo and would be back. He accepted that happily. Meeting completed, he had been waiting for me to come back and still remembered that I was going to come back from the loo even though we’d been an hour. We had a very good visit with Dad. I had decided to visit Dad every other week, so the next week I went to visit just Mum and went on holiday  heartened that they both seemed to be doing well.

Apart from a small blip during the holiday when I thought I’d have to fly home – Mum had a fall and was taken into hospital with a suspected stroke but she was just stiff and cold from lying on the floor against a radiator for two hours. She has an amazing bruise and is in pain but basically a lot better. My dear brother whisked her off to his house for Easter where everyone had a lovely time.

Long and the short of it was, I didn’t see Dad for a month. Sometime in that month, Dad has just kind of … stopped. You see, up until now, visiting Dad has always been like seeing a healthy person, if demented. He’s been full of beans. Yes he dozes but he chats and although he’s completely demented he still makes the running. Dad always knows I’m Mary and understands that he loves me, even if he’s not quite sure where I fit in. Usually, I just let him work it out because it only takes him a few seconds and if he forgets for any longer than that it’s because he’s panicking about it. The only time he has forgotten was a few months ago, when he was still living at home and from the point of view of switched on-ness (is that even a word) was rather worse than now, he asked me who the hell I was and why I was calling him ‘Dad’.

I was a bit stumped, but I reckoned that suddenly discovering he had a daughter might come as a shock at his age so I thought it best to just let him remember in his own time. I didn’t answer the who are you question but just said,

‘Would you rather I called you John?’

‘Yes please,’ he said.

So I did. Within about thirty seconds he had worked out exactly who I was, I made some joke or other and he laughed and said, ‘that’s no way to speak to your father’ and I was able to go back to calling him Dad again. That’s the only time he’s forgotten.

Three weeks ago, just after I’d got back from holiday, when I talked to Mum about going to see him, she told me it wouldn’t be much fun. She explained that he was refusing all food and that it would be lucky if he opened his eyes. I thought it would be Mum confusing one bad visit with all visits. I rang the home to check. It wasn’t.

Yes, they confirmed, Dad is refusing food a lot of the time. They had proscribed a brief course of steroids to try and make him a bit hungrier but his fluid and food intake was very low and he’d lost 15kg in a very short time. I felt very sad and asked what we could do. The manager said that both she and the doctor felt that Dad has probably had enough but to bring things he liked to eat to see if we could tempt him.

When I arrived, I found him sitting in a chair, asleep with his head on his chest. His refusal to eat has caused such a rapid weight loss that he looks like a concentration camp victim. I took his hand and he said, very quietly, go away. I positioned myself so he could look at my face and told him,

‘You know you’ve got a daughter, Mary.’

‘Yes,’ he whispered.

‘Well that’s me, I’ve come to see you.’

‘Oh,’ he said, brightening slightly, and then he closed his eyes and went back to sleep but didn’t take his hand away when I held it.

I offered him Turkish delight, which he loves, and some jelly babies, also a firm favourite. He refused both with a grunt of dismissal. There wasn’t much to do after that so I sat for ten minutes holding his hand. Then I remarked that our hands were getting a bit sweaty and that I was going to let go. He didn’t react.

If I’d thought, I’d have brought some writing and just sat with him for half an hour because I’m sure he’d have appreciated someone just hanging out with him, even if he didn’t have the energy to interact. But I hadn’t.

Unsure as to what to do next, I got out my phone, looked up Gutenberg and read him a Beatrix Potter book that he and Mum had always read to my brother and I as children; the Fierce Bad Rabbit. He made no acknowledgement but Maurice, sitting next to him clearly enjoyed it immensely so at least it wasn’t wasted.

There was music playing, toe-curlingly awful, over produced love songs. Neither songs nor artists were recognisable, it was more of a kind of, ‘your favourite Kareoke artistes sing songs that sound a bit like hits but never were because they’re really shit…’ all with horrible 1980s style electric piano. Pop composed and produced by numbers. Dad hates pop music so I felt very sorry for him but on the flip side not everyone likes every kind of music and there are lots of folks in there, some of whom may loathe the kind of classical music he loves. Even so, it was so awful that half an hour with Dad was going to be a tall order for me. I thought how grim it must have been for him. No wonder he didn’t want to open his eyes.

Truly, truly, I say to you, when you were young, you used to dress yourself and walk wherever you wanted, but when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go.

Poor Dad.

On the upside, everyone was up and dressed and sitting in the light airy sun lounge. The staff are kind and attentive, they always chat to the residents and treat them with dignity. They interact with the residents, and one another with good humour and kindness. The staff to resident ratio is good because they are all together. Some stare into space, some sleep like Dad, some are a little agitated, some chat to one another. The atmosphere is happy and if Dad has to listen to a bit of music he doesn’t like sometimes, then, in the grand scheme of things, I’d say it’s probably worth it for the other benefits of living there.

After twenty minutes I gave him a kiss, said goodbye and left. He made no acknowledgement. I cried a lot of the way home.

The next week visibility was at 100 yards max the whole drive down. It was a horrific and slow drive, the A23 was three into one, the A272 was blocked by an accident just as I turned onto it and when I finally got to the tiny lane that leads to the home Dad is in the fucking gas board were digging it up and it, too was closed. Bollocks, I thought, I’ll go have a look and if it’s near the top I’ll park and walk the rest of the way. I was, I’m afraid, a bit sweary with the workmen who leapt out and stopped me as I turned in.

‘How closed is it?’ I asked them. ‘I’m going to the windmill. Can’t I just park half way up and walk the rest of the way?’

They explained that I couldn’t.

‘Then please tell me how the fuck I get up there?’ I ranted.

‘Listen, there’s no need to use that kind of language,’ said one.

I apologised and told them I’d been on the road for three and a half hours instead of two and a quarter, that every chuffing road I’d come to had been closed and that I had to visit my father who was rather grimly unwell. They were actually very sweet after that, probably because it was becoming abundantly clear that I was on the brink of crying copious tears of frustration and that the sweary anger was merely an avoidance tactic. They explained there were diversion signs. There weren’t, or at least, only in the opposite direction, but luckily my phone had a decent signal and Mrs Google knew the way.

On the upside, the visit was better. Dad hailed me when I arrived, we had a lovely chat, I persuaded him to drink some water. He’s still very quiet though and this time they were playing some teeth-gratingly cheerful rock n roll music (again, not by the original artists). He was just being transferred to a chair and I asked if they could put him in another room away from the music. I explained that playing him pop music was a special kind of torture for him. They put some classical on bless ’em. He has been eating ice cream and drinking a bit more apparently. He asked me questions, the way he usually does, and dozed fitfully in between. He was delighted to hear that his grandchildren, on both sides, are involved in plays – Dad was a great actor, really good. He could have done it professionally had he not wanted to be a teacher, instead, pretty much from the point he was old enough to know what a career was.

Anyway, he was delighted as my brother and I are funny but our minis are like Dad and can act properly, which is rather splendid especially for him. He was very aware who they were, delighted they were acting in things and his face lit up when I mentioned them all. So that was grand.

I didn’t tell him that McMini had a nightmare about the Dolmio couple smashing down the door with axes and telling him he was the special ingredient of their bolognaise sauce. Or about McMini’s solution in the dream, which was to beat the Dolmios to death, with our cat’s help. I also demurred from explaining how ‘Dolmio Couple’ has now become a playground game at McMini’s school! I’m telling you though, because I think it’s hilarious and it these McMini-isms and McOther’s wry humour, have probably kept my sanity in tact over these past few years of dementia grimness. But back to Dad.

One of the questions he asked was why he was there, I told him there’d been a leak at home and a flood and that he couldn’t return until it was fixed so he had to stay in this hotel.

‘Fucking stupid!’ he said but he accepted it.

‘Indeed,’ I agreed.

Lunch arrived, which he refused but I told him ice cream was on its way, gave him a hug and left.

I walked out backwards (rather carefully as I didn’t want to trip over any of the other residents) while waving at him. He waved back at me, both hands, big cheery grin. Suddenly he was Dad again, he waved, I waved and we laughed at one another. We carried on until I was too far away for him to see clearly and assuming I’d gone, he put his head on his chest and closed his eyes but this time, he gave off an aura of quiet contentment.

That was better, and after really not having the energy after her fall, Mum finally made it to see him the next day and had a decent visit, herself. He told her he wanted to go home too. But ‘home’ to Dad is actually a house in Eastbourne that he lived in for a couple of years while he was 8 and 9. He can never go there. It doesn’t belong to us. He understands that Mum lives at ‘home’ but doesn’t always recognise the name of the house when we say it. In short he is stuck in some kind of horrific limbo. Mum said she’d happily bring Dad back to live with her again if she thought it would work but we know it wouldn’t. He would be miserable and confused, the way he was before. That’s the epic cruelty of it, because even if the loved ones were familiar to him, the house would be strange and he wouldn’t understand. He’d go completely psychotic again.

Most dementia patients seem to reach this stage. Partly the not eating is about control, yes or no to food and drink are the only decisions Dad has any power over. But also, there seems to come a time when many dementia patients give up and decide enough is enough.

It looks like Dad has reached the ‘enough’ stage. Both the lovely lady who runs the home and his doctor think he has. In some ways, that’s a positive if he is reconciled to his decision. From what I understand, this stage usually lasts anything from a few months to a couple of years. Even so, while I thought it would be a relief to reach it, now we’re here, it isn’t. Instead it’s heart rendingly sad. And I think that is probably because, for the first time, visiting Dad is like visiting someone who’s ill. Not a healthy demented man but a man who is sick, and hasn’t the energy to engage the way he wants. Except maybe Dad doesn’t want to engage much.

A friend of mine whose mother has Alzheimer’s told me how her mum said that sometimes she was exhausted trying to make sense of it all. And I suspect that’s what happens. It just gets too exhausting and they can’t be arsed anymore. To be honest, I hope that’s where Dad is. That he’s all square with the world, ready to leave it and calmly making his own quiet exit.

The trouble is, it doesn’t always feel as if he’s given up. Sometimes it feels as if he’s still fighting but has lost the battle. It feels different. It feels as if he’s broken. Acquiescence is one thing, but defeat is altogether different. All I can hope is that it’s a case, not so much of defeat, as having reached skirmishing stage. Dad rises to the fight of … being … some days, and wins, but maybe, in order to have the energy to do so, he has to let the disease hold the territory on others. Perhaps he’s pacing himself? Or perhaps it’s just that when he can’t be arsed he seems discontent because he’s pissed off with the whole business, which is fair enough, and logical, and not quite the same as discontent. I hope so.

There’s no answer now and few positives to be made of it. I can only pray for gentleness from the world for Dad, or do I mean a state of grace? If he is experiencing any inner turmoil I pray that it will swiftly cease and that he will live the rest of his days, be they months or years, in a state of peaceful, contented calm.

We’re arranging for his parish priest to come and see him. He’ll probably tell her to fuck off, but even if that’s all he does, I am certain it will help.

15 Comments

Filed under General Wittering

15 responses to “There may be trouble ahead … #dementia

  1. The verses from John are painfully appropriate, thanks for having the courage to write this

    • They are aren’t they. The sad thing is that where Dad wants to go can’t be reached. He’s a visitor, trapped in his own time, wishing he could return to another one.

  2. I was just reading that passage in another context. It resonates.

    I’m living in a place now where the Memory Support residents are downstairs in this same building.

    And most people here are older than we are, and some of them are visibly going but can still live with their spouses in the Independent Living apartments for now.

    I hope I get to that acceptance place, where I can take some of my new friends leaving me before they are gone, if you understand what it’s like.

    But I didn’t realize how much death is present in a facility full of old people (340 of us), where we’re still among the ten youngest because other people move here older than we are – when some crisis hits.

    I will get past that place – but it has pointed out that this model of living, even independently, has a few flaws.

    And I examine every little thing I do to see if I am the one declining. That part’s scary. I have a lot of words to finish first.

    • I’m sure you will finish those words, and I can imagine that a retirement community does have a drawback. But then, losing a friend always hurts and always will. Perhaps we get better at coping as we get older and perhaps, as we age, it gets less shocking and, if they are our contemporaries it feels a bit less unjust. It does to me anyway, the first one, a friend’s sister who was fourteen, felt terrible, I wouldn’t want to die now, aged 50, but perhaps those who do, who are spared dementia, perhaps they have a kind of luck, dying as they’d like to be remembered and all that. I’m not sure.

      I hope this is just a bad few months at your community and that the deaths slow down. These things come in phases in my life, so maybe I hope the same can be said of yours. But as you say, it also depends why they come in, some have to, rather than plan it looking ahead the way you have.

      God bless you chuck.

      Cheers

      MTM

      • I’m not despairing – that wouldn’t do. But it’s taking far longer and has far more components than I anticipated (or I probably wouldn’t have been able to move!).

        If I didn’t keep acquiring minor but annoying things as I age, on top of everything else, I think I’d be more cheerful about it.

        OTOH, there are pools. I can’t tell you how much I needed them – and enjoy being in them.

        Now, if I can just get the facility to take the trike out of the north garage for me, I’d ride it more. The elevator I was using (lift) is out indefinitely because water leaked in somewhere, and water and electricity don’t mix.

        But someone could walk it out for me.

        Little by little.

      • Growing old is not much fun is it? I hope you do manage to find someone to help you with the trike. It seems quite mean of then not to help and leave you without it.

      • For people in charge of a facility for older adults, sometimes they don’t think.

  3. May his remaining days be filled with grace indeed.

  4. Diana

    Amen! To those prayers for your dad! Amen, and amen, again!
    I am so glad that you had a good visit to follow up with, after that distressing earlier one.
    I recently heard that in some dementia residences the residents are given some cannabis supplements (medicinal) and are having significantly improved interactions. I hope the research proceeds at a good pace, and that the treatments become more easily accessible.
    Bless you all as you wend your way through these times.

    • Thanks. And on the cannabis front. Yep. The sooner medical cannabis is available here in the UK the better. It’s supposed to be great for the menopause too but as a solicitor’s wife I have to be a bit careful. I can use CBD oil but anything else gets into a grey area, legally. A grey, husband-gets-struck-off-if-I’m-caught kind of area. It’s chuffing annoying!

  5. Diana

    yes — and there is such a social stigma here (at least in some circles) because such an emphasis has been placed on the non-medicinal effects that even when the medicinal are mentioned, people scoff.
    Then there are the legal implications — for drivers, for example….
    Things will change — hopefully for the better.

    I forgot to mention something that we discovered a week or two before Mom died — we could rent a wheelchair accessible van! Mom’s last real outing was to visit her best friends up the coast (which involved a ferry ride there and back) and we didn’t want to take multiple vehicles to accommodate folding wheelchair, Mom, and assorted siblings. A woman who is herself in a wheelchair, and dependent on care aides, bought a van, and rents it out. (Her parents do a lot of the legwork of making sure it’s cared for, prepped, etc.) It was a real God-send. It was not cheap for the day, but made it possible to get Mom out for a much-longed-for visit. And, because we didn’t have to do any heavy lifting of chair, or of Mom — except for a couple of bathroom breaks — it was a whole lot easier on us, too.

    There may be something in your part of the world — so check online, or ask around, if you are able. I would love for you or other family members to be able to spend time outside with your dad if he is well enough.

    And if not — may you continue to have some moments of joy and lots of peace when you visit him.

    • Ooo thanks for that. I will have a chat to the carers and look into it. I’m sure Dad would love a trip out from time to time although he’s probably beyond anything more than an hour or so.

      Cheers

      MTM

  6. Sorry to be a tad late in visiting.
    It was eighteen months with my mum after this stage, except she wasn’t my mum any more, so my grieving for her all happened during this time.
    My tip – to do your best to record the dad you had securely in your mind and heart, so you remember him as he was, not the shell he has/will become over the next few months.
    lots of love
    J

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