I am so ashamed. I shouted and swore at the Goldfish. It was two o’clock in the morning and, in my defence, I hadn’t slept more than a couple of hours for the previous few nights. It brought home to me just how desperate I’d become to have a few nights’ sleep – in my own bed.
Wee-sis and the DH do sleepovers when they can, but one night at home in my own bed is not enough. I had to accept we needed more help.
Five hellish nights in a row are way too much. During the days I’ve done my best to keep up with washing, cooking, cleaning, trying to promote my books, find review sites, keep up some semblance of a working life as well as entertain the Goldfish when he is awake. Getting him ready for bed is a performance as he doesn’t help much with undressing, though if he decides he’s going to do up his pyjama buttons, it can take a very long time.
Diary entry: “Three times so far and he went to bed less than two hours ago. Persuaded him to sit on the loo but it was an unproductive interlude. Back to bed, walking a snail’s pace. I don’t understand how he can get out of bed with such agility and trot about the house – well, shuffle, he doesn’t actually trot. But he can shuffle at speed – until I’m guiding him back to bed then he can scarcely move. And how is he still awake? He’s had a dram, two codeine phosphate, and a sleeping pill. There’s really no pint in giving him the sleeping pill as it clearly doesn’t work and I don’t want to increase the dose. “
Next night: “Back in bed after second time up. PJ trousers wet but can’t find where he peed – not in the commode, not in the loo. Lot of wriggling around and the bed is creaking. Get up to investigate and find him peeing at the side of the bed. Changed PJ trousers again, mopped the floor. Told him I didn’t understand how he could deny needing to go to the toilet then pee all over the floor a few minutes later. He looked puzzled. I got him into bed. Apologised for shouting. Five minutes and later he’s up again. I rush through, grab the pot from the commode and he did a HUGE pee – have no idea how his bladder can hold so much – and he’s on water tablets!
If it wasn’t toilet problems he would wander the house, usually ending in the study where he would try to close the door of the computer desk. Unfortunately, my PC sticks out and the door doesn’t close – not that such a minor detail stopped him from trying repeatedly.
From my diary, same week: “Last night was terrible. The Goldfish was up so often I lost count. I’d settle him in bed, say goodnight and before I’d reached my room I’d hear him getting out of bed again. He said he needed to go to the loo – although from the state of the floor it was clear he’d already been – just not in the right place. Walking back into his room I told him to stop before he walked into the puddle. He carried on with dogged determination. I yelled. He carried on and then, as his feet came into contact with the wet, he stopped. “For fuck’s sake, I told you to stop.”
He swivelled round to look at me. “Oh, my,” he said in that tone of voice he used when I was a child doing something I shouldn’t. I guess swearing at my father is one such thing I shouldn’t do and I don’t think he’s ever heard me utter anything stronger than a bloody or a bugger. I apologised, got him into bed, mopped up, said goodnight and crept back to my own bed feeling very, very ashamed of myself.
Then, today, I was talking to someone in the supermarket, looked up and did a double take when I saw my son walking towards me. I’d totally forgotten he was coming home from university for the weekend. DH, Wee-sis and I sat down to agree to find an agency to provide someone to stay for two nights a week.
Ah, the fun life of care-giving! I actually laughed at the part when you swore and he turned around ready to scold you, lol! You know what I think; as hard as it is to care for somebody that you love, can you imagine caring for someone in your dad’s situation, who isn’t a relative? There are so many cases of elder abuse, and likely because of frustration and lack of sleep! If the worst thing you ever did was swear, then I applaud you!
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Hello April. It was at times like those that I could really understood how easy it would be to lash out and slap. I never did but I was lucky I was able to say I needed more help and had a support network around me. I certainly understand why sleep deprivation is a torture tool – there comes a point when you’d confess to anything to sleep for a night.
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EXACTLY!!!!!!
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I feel for you. Yes, get someone to stay 2 nights a week so you can get a rest! I remember all the times my mom used to wet the bed before we moved her into the nursing home, but she never did it on the floor. I assume you have a plastic or vinyl cover for the mattress?
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Hi Erica, thanks for dropping by. Yes, we had the mattress covered and we also had the carpet lifted in the bedroom and replaced with vinyl so it was easy to mop up.
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It all sounds like a total nightmare 😦
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It felt like it at time, Lucinda. I was a bit like a zombie during that time, totally unable to write anything other than my diary entries.
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Oh Mary, I really feel for you. Think we should have a been there and done that club! x
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Quite a few members in that club, Ruth. Thanks for following the saga.
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I’m HOPELESS without my sleep. Heaven knows how I managed to deal with my son when he was tiny. You are a saint!
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Oh, Jenny, I used to look back and remember the sleepless nights with my son – but I was younger then and there was the expectation he would eventually sleep through the night (though it took the best part of two years). Thanks for saying I’m a siant but I think my display of temper and bad language rather show I’m far from that!
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The other day I looked at my notes from my mother’s illness and… I literally couldn’t believe what I read. The handwriting was mine but what I wrote– what I stated we had done, and said, and felt–seems like it must have happened to someone else.
Now as I hear about you and your Goldfish, I realize that while your details are different, your emotions are so familiar.
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It’s strange how the mind can subtly alter how we remember things, isn’t it? One of the reasons it is important to record events and feelings as they happen.
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Oh, Mary, this description of the night time hell was so close to my reality — not now but last winter when I got no sleep. But at the same time, for some reason, you totally entertained me and I laughed and laughed. It’s not funny but oh, lord, it is. Otherwise, we would lose our caregiver minds. I recall being so angry with Bo because I wanted to go to bed, I needed sleep. He had no idea why I was upset. I swore and I complained. One time I even pushed him down on the bed and I recall the hurt look in his eyes. Then I felt just awful….guilty and embarrassed and so sad that I hadn’t been nice to the nicest person I know. Nancy
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You are so right, Nancy, we need to be able to laugh or we’d never cope – although people who have never had to cope with these situations probably think we have a totally weird sense of humour.
And I know that hurt look in the eyes – it stabs straight into your heart, doesn’t it?
Since writing this post and re-living those sleepless night I’ve been wondering what effect lack of sleep has on people with dementia. It surely must add to the confusion.
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Such a vivid recollection of an incredibly difficult time. I think you were on to something with the F word because he did react to it and go to bed. Sometimes , I think, too much is asked of one person, but you are stronger for it and from the comments, your writing about it is a solace.
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I think the poor man was in shock at hearing his daughter use the F word! Sometimes writing about all this is a solace but at other times it leaves me raging about the lack of the support that’s needed for the ever-growing number of families this affects.
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Yes, it’s a shame. My neighbor recently broke her hip and is in a nursing home. She so wants to come home, but cannot. She needs home care, which would be much less expensive to provide if it could just be worked out together with her family.Something is very wrong with this picture.We can’t just keep institutionalizing everything, can we?
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Honest, and humble. Good. We use the same exclammation, in frustration. Alas, mine usually directed at self, or recalcitrant doctors, lol – ‘for fuck’s sake, damian!’
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Thanks for your comment. I try to keep this as honest as I can. There would be no point in writing it if I was hiding what a crap job I was sometimes doing.
Oh, yes, that exclamation was often directed at self – and (though not out loud) at support agencies (usually managers rather than on-the-ground staff) and doctors.
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A few thoughts—isn’t it so like the new single mother with a baby who just doesn’t settle to sleep and the Mum is up down up down all night long, but then has to function through the day. With carers, at least they get whole days off, or can sign off at the end of a shift, and get home to their own bed. Yes you can kind of see how elderly abuse happens, and the need for helpers and carers – enough outside help – to prevent that point from being reached. But not so much outside help that the person ends up with 17 different carers coming and going every week, and the elderly person ending up more confused and bewildered!! Balance must be key, it seems. Let’s hope that’s what you managed to find……….
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Yes, Janette, exactly like that though, as I said to Jenny above, at least the new mum can, through the fog of exhaustion, believe this is a phase and the baby will eventually sleep through the night.
I totally agree the person should never have to be faced with 17 different carers, many of them total strangers. I had to fight many a battle with the agency which provided the support for showers, dressing, etc – the really personal care. We eventually succeeded in getting it down to a core team of about four, all of whom dad liked but sickness or holidays could throw that out the window and it took ages to get it back to how it was.
I’ll post more soon about our search for night care…
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As usual you charm me completely even as you write about the darkest moments. I love the juxtaposition of your father and your sun, showing up like a sunbeam after the hard, hard night. Also, have I mentioned how handsome your father is.
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Freudian slip. Sun for son……
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I understood – and it was very fitting.
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Thank you so much. I am so pleased you are enjoying my Goldfish blog. My sister left a comment on FB about how handsome he looks in his photos. When I was very small I thought he was related to Prince Phillip because we had a tea caddy with Phillip and the Queen on it and I thought dad and Prince Phillip looked alike!
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Mary, I get it. I made Mom cry this weekend. Just because I am worried and want to get her more help. I’ve not sworn at her yet (she hates swearing), but that day may come. I don’t know how you survived, really don’t…. xo
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Thsnks for dropping by, Julie. It was tough at times, no point in pretending otherwise, and the lack of sleep was a killer. I hope you manage to get some more help for your mum.
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This is a powerful piece of writing, Mary. I see your Father shuffle through his chaos and feel your profound frustration, guilt, love, anger and compassion.
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I did feel so ashamed and guilty that night. I knew all the things we should and shouldn’t say to someone with dementia but all the theory flies out of the window when sheer exhaustion and frustration set in.
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This is a powerful and necessary memoir, Marry.
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