After 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!
Fascinating and illuminating Mary. It sounds as if he was ready for a good feed and enjoyed it. Will he really have forgotten he’d been anywhere, for ever, or on some future day will he suddenly announce that he’d been out with you?
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Thanks for taking the time to read and comment, Janette. Sadly, no, he won’t remember. Well, I say that and perhaps it’s not true. Perhaps he will be able to look at memories inside his head but not be able to express them verbally.
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Glad you’ve finally started writing about the goldfish, Mary. Well written and very readable.
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Thanks, Lynn. Glad you enjoyed it and hope you’ll want to read more.
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Well done Mary, I’m sure your honesty about the situation with you and your Dad will be a huge help to others struggling to cope with their own responses to these challenges. The sadness in the event of of a person you love disappearing in front of your eyes comes across very strongly.
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Thank you Vivien, I appreciate you taking the time to read and comment on this blog.
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Nicely done! Mary Smith. I love the understated humor of the piece, though I know how exhausting and frusrtating it must be coping with a loved one with dementia.
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Many thanks, Jackie. It is frustrating and exhausting but perhaps something good comes out of everything life throws at us. Glad you like the humour. I don’t want it to be all doom and gloom.
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So glad you have started this, it brings back many memories of my time doing these things. Don’t discount using other people as much as you can…how about visits from someone with a therapy dog? They can happily fill an hour or so while you all get a break, and not be upset if it’s not remembered. Also, the moment to moment thing works both ways, a disaster or a mistake that leads to a row will be forgotten just as fast.
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Carolyn, thanks so much for your comments – and for encouraging me to do this. In later posts I’ll be writing more about getting the support we need (the step-monster refused outside help so it was a tough battle). And thanks for your comment about the moment to moment thing working both ways. I hadn’t actually thought about the upsets being forgotten just as quickly as the good things.
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A very interesting (and useful) insight into caring for someone with dementia, Mary.
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Many thanks for dropping by Bill and taking the time to leave a comment. It would be nice to think the blog might be useful to other people. Hope to see you here again.
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Heart-tugging, but funny, too. It’s hard to see the humor, sometimes, amidst the frustration and worry and sadness. Bless you for being able to!
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Thanks for commenting so positively, Lorrie. I wasn’t sure how it would be received but thanks to feedback like yours I’m feeling more confident about putting up more posts about the Goldfish and our journey together.
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Well done – work to achieve a happy day, even if you are the only one doing the remembering. The mood is all, and the better the mood, and happier the sufferer, makes the necessary living in the moment positive. If you can, sing the Piaf song …… and adopt the “do it now” motto. Deadlines permitting, of course.
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Thank you, Jenny. I’ve made a start and hope to continue with this. I appreciate your comments, especially the “do it now” motto!
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Sad, but your gentle humour leavens the whole experience, Mary. So difficult for you to cope with, but interesting, and I’m sure, comforting to those who are dealing with relatives with dementia.
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Many thanks for dropping by, Joan, and for your kind comments. I’m glad you found some humour in it as I don’t want it to become too gloomy.
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Hi Mary. My mom has Alzheimer’s and every day it seems a bit worse to the point she’s begun forgetting some of her grandkids names, and she hallucinates at home. Very scary. Super sad. And at times, bloody hilarious to hear some of the things that come out of her mouth. But mostly it makes me yearn for my real mother, the one from a few years ago with the razor wit and the steel-trap of a memory. I fear she has disappeared forever.
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Hi Julie, Thanks so much for commenting on my blog. I’m sorry to hear about your mum. It really is a horrible illness which seems to take away a person’s personality. It is just so unfair. My dad also used to have an amazing memory but not now. For a long time, though, he could recall the names of every kind of tree and bird and wild flower – all things, which I suppose, he learned as a boy. He forgets everyones’ names now and gets round round it by calling all the women in his life, ‘Sunshine’.
We used to not like to laugh out loud at some of the things he said but we realised he enjoys laughing and if we laugh at something he joins in quite happily. I was going to put up another post tonight but it’s now after midnight here so I’ll leave it until tomorrow. Thanks again and I hope you’ll drop in again.
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I really love the “laugh or cry” style of your blog, Mary! Out of interest, do you also live with Goldfish and Step-Monster? x
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Thanks, DementedGirl, glad you are enjoying the blog. There have been some developments on the tep-montser front which I will blog about in the not too distant future!
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Mary this is fantastic. I was so hoping you would be able to write up your experiences with the changing life of your dad. You write as it is Mary, no dressing things up, just true with your underlying subtle humour. The fact your dad can join in and share laughter – even if he doesn’t know what he is laughing about – is a real positive as that laughter will give everyone some real feel good moments. Love the very descriptive names ‘goldfish’ and ‘step-monster’ . Looking forward to reading more.
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Thanks, Noreen. Glad you enjoyed it and want to read more. There will definitely be more to follow.
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Reblogged this on Barrow Blogs: and commented:
Oh, remember these times so well!
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Thanks, Judith. I appreciate the re-blog.
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Enjoyed your post. Mary – looking forward to more
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I know it’s a year later, but I just re-read this and laughed out loud at the absurdity of SM’s view of life.
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Quite unbelievable, isn’t she?
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I feel sad when I think of the moments he lost.
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Thanks, Rob. I did realise that even when he forgot the things we did together a feel good factor came into lay and he was more cheerful after an outing.
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