My Dad’s a Goldfish – Going back

cropped-goldfish-87-1254566814ncva1.jpgSince I put up some of Dad’s army days photos on my last post I’ve been digging through the boxes of unsorted photos and am now in the process of scanning them. I’ll put some up soon, including one I found of the football team I posted last time which has names, in Dad’s handwriting, on the back.

I’m also scanning some very interesting photos of ceilidhs from the years on Islay – alcohol was clearly involved. Whisky, for sure. On an island of eight distilleries it would have to be!

The project to turn the Goldfish blog into a book, which I’ve mentioned before, is taking time. I had originally begun it with the diagnosis but wasn’t really happy with that starting point. I toyed with beginning at the end of Dad’s life or with when the Step-monster walked out on him. However, I think I’ve decided the best place to begin is the point at which my life changed – the day the Step-monster announced she thought it would be good if the Goldfish went into residential care one day a week.

My life totally changed that day so I thought I’d repost it – and you can tell me if it seems like a good place to begin. Funnily enough, Facebook reminded me today I posted this three years ago. I think it was about the second post on my blog.

Obviously, in the book, it won’t be exactly as this post.

over-the-bath-showerAfter some time the step-monster announced she thought it would be a good idea if the Goldfish went into the local residential home – “only one day a week so he can have lunch and a shower.” Wee-sis and I were horrified at this thin end of the wedge being shoved in. He’d hate residential care.

Since the dementia started he has become terribly confused – to the point of hallucinating – whenever he’s had to go into hospital, not knowing where he is and not understanding why he is there when we explain he is in hospital. We’ve had some of the most bizarre conversations when the Goldfish has been in hospital. Once, he was convinced the nurses’ station was a bakery and told Wee-sis to go and ask for a cake as they were just about to take one out of the oven. On another occasion he thought he had been taken to a hospital in the north of Scotland for blood tests and had been away overnight. “You’d think they would be able to do the tests here,” he complained, “instead of wasting all that time and petrol to go to Perth.”

In residential care we knew he would deteriorate fast. It was not an option Wee-sis and I were even going to consider. We could, though, understand step-monster’s difficulty in getting dad to clamber into the bath to use the over-the-bath shower. Apart from the dementia, he has serious mobility problems caused by an arthritic hip which gives him a lot of pain.

It was time to get social services involved, despite the step-monster not wanting anything to do with them. The decision was followed by much running around on my part talking to social services, getting referrals (nothing, I have learned can be done without a referral: it can be a doctor’s referral, a social worker’s referral, even a self-referral but the all-important referral must be made) An OT (occupational therapist) came along and suggested removing the bath and installing a walk-in shower. This will make life easier. Then someone else comes along to measure up, discuss colour schemes, the ordering and placement of handrails – and the costs involved. We are told it could be free if the Goldfish’s income and savings are below a certain amount but we know he isn’t eligible and decide not to go down the means-testing route. I could imagine him deciding to do without having the shower in rather than have someone asking personal questions about his pension and savings. There is, we are pleased to hear, a substantial discount available without the means test being necessary.

The CC (care co-ordinator) from social services came to confirm the work was going ahead and offered to provide a commode to be used while the lavatory is unplumbed during the day. We’ve been assured it will be plumbed in again and usable overnight. The step-monster didn’t think a commode is necessary. “We already have a facility in the bedroom,” she said.

“Oh, you already have a commode?” asked CC.

“Well, no,” this said with a wee self-deprecating smile, “but we manage.” What she means is she makes the Goldfish pee in a bucket if he needs to go in the night. I said it might be nicer for him to use a proper commode instead. CC agreed. “Oh, well, whatever you think. You’ll know best,” the step-monster said.

Commode duly arrived and the step-monster put it in the garage. Said he could use the ‘facility’ in the bedroom and if he needed a ‘number two’ she could take him up the road in her car to the supermarket!

As well as organizing the shower installation, I arranged to take the Goldfish out one day a week to give step-monster a break. We don’t actually see what difference it makes as she goes out and does her own thing every day anyway… Leaves the Goldfish parked in front of the telly. At least it will be something he will enjoy.

I hope Wee-sis can help out with some outings, too. We all – Wee-sis, DH and I – have to work for our living. Wee-sis is a support worker and does day and night shifts, DH runs his own business and I am a freelance journalist and writer. As I have no fixed hours (thought very definite fixed deadlines) I am the one who can most easily do this. In everyone else’s eyes at least.

On the first outing the Goldfish and I made together, the rain started as I pulled up to collect him. He was less than enthusiastic about going out in the rain and I understood why when I realized walking is so painful it takes him ages to go walk the twenty yards to where I’d parked. The rain didn’t stop until we came home.

Our first stop was at an art gallery/shop in a nearby town. There was a ‘country pursuits’ exhibition which I thought the Goldfish would enjoy. He sank onto the first seat he came to (which was in fact an exhibit and not intended for customers actually to sit on; the owner kindly turned a blind eye) and looked at the pictures he could see from where he sat. He liked the ones depicting hares.

Coffee and cake was next on the agenda which he devoured with relish before I drove along a coastal road, the two of us peering out through the rain at the glorious scenery. The Goldfish kept up a running commentary, naming trees, guessing their age and repeatedly saying: “I’ve driven along these roads a few times in my day.” When I say repeatedly, I mean roughly once every minute. We stopped for lunch at a café where he consumed – very slowly but with obvious pleasure – a huge bowl of soup plus a sandwich, coffee and an ice cream. There’s certainly nothing wrong with his appetite. Back in town I called in to see Wee-sis so the Goldfish could enjoy patting her dog. He always had dogs and misses having one around. Wee-sis also has cats, one of which really likes the Goldfish and made a beeline for his lap where he lay, purring and shedding masses of orange fur.

Wee-sis asked the Goldfish what he’d been doing, to which he replied: “Nothing. I’ve not been anywhere.” Six hours touring around, £50 on petrol, lunches and coffees and he doesn’t remember a thing about it!

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52 thoughts on “My Dad’s a Goldfish – Going back

  1. It sounds like this suggestion was an epoch in your collective lives, so I think it would be an effective place in which to begin.
    That was a lovely but painful story to read, but it’s heartwarming to know that you and your siblings did the best you could for your dad. Shame the “step-Monster” couldn’t do the same!

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  2. “Step-monster”, I can relate. Alas, mine was not a ‘step’. I must have missed something as I am curious where the name of Goldfish came from. I shall have to look back at previous posts. Having cared for a great-aunt with Alzheimers can be exhausting and frustrating. With Vern, it was a constant effort to distract her. I’ve no doubt, based on another book you wrote, that you will weave this into another great story. It would be nice to have some glimpses of your father before this malicious ailment took hold. Keep us posted on the progress and I shall look forward to sitting back with coffee (perhaps some wine) and the completed book.

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    • I think in the very first post on this blog I wrote about dad becoming a Goldfish in that, like a goldfish, he had very little short term memory. I think they have now disproved that ‘fact’ about goldfish, though it still seemed a handy shorthand metaphor.
      Exhausting and frustrating pretty well sums up looking after someone with dementia – though there were moments of joy and fun, too.

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  3. That last paragraph is really telling, Mary, and would serve beautifully to introduce the levels of distress and frustration you and your family must have felt.
    If I ever finish writing Nick’s story, it would begin with the attack. That’s the easy bit. He just keeps moving the happy ending.

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    • Thanks, Barb. When I was trying to decide where to start I realised the diagnosis didn’t impinge greatly on my life at first and there was a chunk of time in which we all carried on as though everything was as usual. I had no inkling, no warning, of how much my life was about to change that day.

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      • When I read this, I remembered thinking one day with my own father, that we’d lost him, but he hadn’t lost anything. For him, my mother and all the people he knew were still there. He was still in his own house, and even the times we weren’t real for him, all those memories were still real.

        So yes, I would absolutely start with the day everything changed for you, even though nothing really changed for him.

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  4. I can’t wait to read this book Mary and yes my hatred for the step monster is just like yours, though yours is on a more personal level. Mine is only for what she did to the goldfish. I actually think I loathe her and would hate to meet her on a bad day.

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    • I’m glad you want to read the book, Ruth, and I am really hoping to get it out by the end of the year – though that’s coming up very fast!
      I hope you don’t meet the step-monster on a bad day!

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  5. Oh Mary, I find your story profoundly affecting… I really am struggling for words…I think above it all your humanity, good humour and objectivity shines through. It is awful and shallow but I think thank God it’s not me…. but I suppose that is what we need to do- face the unthinkable and the very real prospect that one day it might be one of us with someone we love and cherish.

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    • Believe me, Paul, I never for a second imagined the things I’d end up doing. Wiping my dad’s bottom was not something I ever thougth about, never mind thinking I might one day have to do it. A rite of passage, indeed! Dementia can affect anyone so you are right that one day it might be you – I hope not – but a sense of humour is a vital part of the coping mechanism.

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  6. I think it would be a great place to start. I’m still struggling with ‘goldfish’ and even ‘step monster’ I struggle with. I’m looking forward to buying and reading the book, but if you weren’t my dear friend Mary, those terms would put me off buying it. I totally understand the use of them, but can’t get the ‘Dad as a person despite the condition’ out of my head, and so want him to be Dad or John. And with the step monster, if we knew her story, she was what she was/is who she is for a reason and I can’t get that to go to the background enough to think of her as a step monster. Ignore me, it’s to do with my work with a) disabled people and b) people who appear outwardly to be nasty, but when you hear their inner story…………. The only thing is, if I think that, might others too?? But maybe not many, in which case maybe fine. Just off to visit at a Care Home where can you believe it, the other day, one of the workers went round every resident asking if they minded the channel being switched on the TV. I felt like videoing and putting it on the 6 o’clock news, it’s so rare!!!

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    • Thanks for your comments, Janette. I always value your input. I have decided to use Dad in the book (though there may be some reference to him becoming like a goldfish) rather than call him Goldfish. The step-monster is a diferent thing. I’m fairly sure I explained somewhere on the blog that I didn’t always think of her as the step-monster (though my sister would argue with that and as she was here while I worked abroad she saw more of her than I did) so that will be in the book. She wasn’t outwordly nasty and many people saw her as a sweet old lady but what she put Dad through is unforgiveable (some of which in pre-dementia days I read in his diaries after his death and won’t be including in the book). I tried to find some justification for her behaviour but failed. I’m sure denial played a part but that can only excuse so much.
      Well done that Care Home. I’ve been watching videos on the Dementia Care Matters website and was very impressed with what I saw. There was one (of course, I can’t find the link now) on the four different ways to respond to a resident’s request for toast and jam – ranging from all-inclusive to negative. I’ll see if I can find the link as I think you’d like it.

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  7. Mary, this will be a wonderful book, enlightening for so many who care for their loved ones and a good heads up for those who will one day be faced with the same predicament. You were a wonderful daughter and what you described just in this post about the step monster is truly appalling! ❤

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    • Thank you, Debby. Fortunately not many people will have a step-monster with whom to contend as well as a parent with dementia. Leaving that part aside, I do think there is plenty help others going through a similar situation.

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      • Absolutely Mary. And let’s not forget that even for those seniors who live in nursing homes, their is also some ‘hidden’ abuse that goes on in some of those places. It’s disheartening to hear stories about seniors whose dignity is cast to the wayside because some people think it doesn’t matter because they aren’t able to stand up for themselves. Compassion is sorrily lacking from some of these caregivers. 🙂

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        • That’s why I didn’t want Dad to go into a residential home. I know he would have been utterly miserable and confused away from familiar surroundings and his condition would have deteriorated faster. The care system needs a total overhaul with staff being properly trained (though you can’t put empathy into someone who hasn’t any) – and properly paid. Maybe if people felt the work they do is of value they would act differently.

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  8. Pingback: Smorgasbord Blogger Daily – Friday July 21st – Damyanti Biswas, Nicholas Rossis, Mary Smith and Yoli | Smorgasbord – Variety is the spice of life
    • Thanks, Lucinda. And, yes, I will weave in something about dad before dementia took hold. I’ve been spending a lot of time going through photos and letters from his past which have prompted memories (some very hazy) of things he told me. He was a man of very wide-ranging interests and knowledge.

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  9. Yes, reading this (and I believe I read it the first time too) gave me the same stomachache. Knowing your dad’s future. Yours and your sister’s. Knowing that it only gets worse, and harder. Knowing how hard it is/was for you to write. Yes, this is a good place to start. xo

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    • Thanks, Pam. It seems like I’ve got my starting point. I have a feeling it’s going to be a book which jumps backwards and forwards as I bring in bits from before the starting point and then move on – and also bring in bits of dad from his earlier life.

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  10. Mary, it is wonderful that you are sharing this story. None of us know what the future holds for us or for our loved ones, but your story chronicling your Dad’s dementia is heartwarming with tones of humor and exasperation. After a severe stroke that left my grandfather unable to vocally communicate or walk, my parents moved my grandparents into our home. As teenagers, we all helped Grandma and Mom take care of him. Even though his life had changed so dramatically, there were moments of laughter and times so frustrating for Grandpa and all of us. Your book will be read by many but will be a gift to all who find themselves in your position. Best wishes to you. ♥

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  11. Brings back so many memories of my mum, Mary. She also had a painful arthritic hip and never remembered us taking her out. She especially loved afternoon tea, and when asked where she had been would say nowhere. Dealing with social services was not easy and even after her passing away I was still fighting them to reconsider that mum should have had the last few months of her care on the NHS. I’ve had so many barriers put in my way, jumped through so many hoops, that I felt as if I was performing at the circus. Glad to say that it’s now all coming to an end and that I can finally look up and tell mum that our work is done and that she can fly around and not worry anymore.

    I look forward to seeing more of the photographs you have. Unfortunately, I never got many of mums, due to a certain member of my step-family throwing then all away. Still, I managed to grab a few before they were lost forever.

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    • Thanks for dropping in, Hugh. Dealing with social services and NHS really does feel like being in a parallel universe, doesn’t it! I hope your hoop-jumping is at an end.
      I’ve been sorting through more photos, which I’ll post soon. I’m sorry you lost most of your mum’s photos (ste-families, eh!). Even if I don’t know who many of the people are in dad’s it’s fascinating to be able to look into his world a little.

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