Loch Awe in spring - Photo courtesy of Neil Donald Photography






Tuesday, 24 June 2014

Springing Dad by Mary Smith

I’ve been feeling a bit of a fraud because I’ve hardly been doing any writing for ages and don’t even have a WIP which is anywhere near completion. For the last few months I have been more or less a full time carer for my dad who has dementia, which does not leave much time or emotional energy for writing a novel.

I’ve been saying for ages I will blog about this journey through dementia-land we have embarked on, so I thought I’d offer up a short extract – and you can tell me if you think people would be interested in reading such a blog (on another site, obviously).

Arrive at the hospital to find dad sitting in the chair beside his bed. He’s unshaven, hair all over the place, no dressing gown, no slippers. We are grateful he least has pyjamas on – even though they are not his own.

He has spilt his water on his bedside table and the post cards I sent from Arran, the pictures peeling from the backing card are floating about beside saturated tissues and an empty cardboard sample container. He has lifted his bare feet out of the puddle on the floor, resting them on the table leg. How long since anyone checked on him, I wonder?

Although pleased to see me, dad is agitated and fidgety. I ask if he needs to go to the toilet. He nods. “But I don’t know where it is,” he whispers. I take him to the toilet. He has an incontinence pad between his legs which causes a bit of a kerfuffle until I get him settled on the loo and leave to give him some privacy. Dad has never been incontinent, has always known when he needs to go to the loo and been capable of going so we suspect the pad is the nurses’ way of trying to make things easier for themselves.

While waiting I clean up around his bed, retrieving a sticky knife, a chip, more damp tissues. OH and I debate the orange blobby object under next door patient’s bed. “Is it an apricot?” he asks.
“Don’t be daft – they won’t get apricots in here. It’ll be jelly.” We look away.

Next Day
Orange blobby stuff still in place. Dad shaved but hair not brushed, no slippers. Specimen sample – empty – on his table. Patient next door tells me the nurse puts it there every morning, telling dad when he goes to spend a penny he should put some in the container. Does she not know he has severe dementia? She must do. She’s working on a ward for elderly patients, 90 per cent of whom have dementia. The other ten percent probably have by the time they leave.
The nurse (rank undetermined as I’m still trying to work out the colour coded uniforms) is ‘happy’ to discuss any concerns I have. That is, until she realises she can’t answer my questions and shuts down – telling me to ring the consultant’s secretary. Why do I do it? Why can’t I keep the edge of sarcasm out of my voice?

They thought it might have been a stroke which resulted in dad being unconscious on the floor one morning. His wife (the wicked step-monster) was at the garden gate waiting for Wee-sis to arrive, leaving dad out cold on the floor. At the hospital they said they would do a scan the next day – but they didn’t, still haven’t.

Doctors think it was a TIA (transient ischemic attack) – quite usual in patients with vascular dementia. There’s nothing to be done. So why not discharge him? He’s determined to come home – packs his belongings in his bag and sets off down the corridor. They usually catch him before he leaves through the swing doors. Take him back to his bed. He must walk miles!
To ‘solve’ the problem of a demented patient trying to escape, the nurses take away his belonging and his bag and hide them behind his locker – so now a confused, distraught old man is even more distraught because all his things have disappeared. This is a ward for people with dementia, staffed by people who have supposedly had some training in nursing elderly confused patients.

Nurse says he can’t go home until an assessment has been done and his care package increased. I ask her by how many hours the package would need to be increased to prevent a TIA occurring. She really hates me now.

Next day and still no assessment then it’s the weekend. Manage to speak to an OT who says she’ll call on Monday. She doesn’t and in the end I ring her – it’s a local holiday, not in today. Begin to think my dad will die in there.

Phone local social services, explain the situation to duty social worker and ask if she can’t get dad out and we can look at care package once he’s home. She agrees this sounds like a good plan, tells me she’ll call me back. Twenty minutes later, she phones – all sorted. We can collect him tomorrow and bring him home.

On a more positive note No More Mulberries received a lovely review  on April Wood’s A Well Read Woman blog which she followed with an interview.

16 comments:

  1. Oh Mary. Yes it is very readable. And so sad and frustrating for you all. Hang in there - and great news re No More Mulberries.

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    1. Thanks, Gill. I picked a random section of the diary as an example.

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  2. Oh, Mary. It seems almost wrong to say how beautifully written and moving that is. Stay strong!

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    1. Thank you Jennifer. What I'd like to know is if there is enough humour or at elast if it is light enough in places to be interesting and make people want to read more - or would it be too maudlin?

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    2. I'm not sure I'd say it was humour (and I'm not sure that I'd find humour entirely appropriate because the situation is so heartbreaking); but I do think you have the tone right. I'd say it was wry.

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    3. Mmhm, I like wry, Jennifer. But I do want it to be readable and not too depressing. It is depressing and it feels like we are constantly battling against a health/social system which doesn't care.

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  3. Dementia is a strange, difficult world - and most difficult of all for the relatives who have to deal with it. I read an extremely moving account some years ago, a book by a journalist, Linda Grant. http://www.amazon.co.uk/Remind-Me-Who-Am-Again-ebook/dp/B005IOKOJU/ref=sr_1_1?s=books&ie=UTF8&qid=1403646770&sr=1-1&keywords=remind+me+who+i+am+again

    Your diary is very moving and sad - and written, as I would expect from you, with humour and kindness, and great vividness.

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    1. Thanks for the link, Jenny. Linda Grant's book sounds really interesting. I've read Keeper by Andrea Gillies and I'm planning to read Sally Magnusson's book. I notice they are all about women with dementia - and all written by women.
      Thanks for your kind comments. I'm plucking up the courage to go live with a blog. I'm planning to call it My Dad's a Goldfish.

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  4. A really brave blog post and definitely worth reading. The 'orange blobby stuff' seems to sum up the sadness and misery of the whole situation.

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    1. Thanks, Guernsey Girl. I think I'm feeling a bit braver about putting dad's story out there. Maybe I should call it The Orange Blobby Stuff of Life instead of My Dad's a Goldfish!

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    2. Now that sounds like a good idea!! Keep positive. Marilyn x

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    3. Thanks Marilyn. On top of everythign else, the poor man got gout in his wrist and is in agony. I don't know how he keeps battling on.

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  5. I lost my Dad twelve years ago, but I feel as though I could have easily written this. The only differences - Daddy was bedridden, and his dementia came in bouts. After major vascular surgery, he spent two years in a nursing home for the skilled care - and yes, it was a nightmare. Sometimes my sister and I did laugh out loud, only to keep from screaming and crying. I was thrilled the day we took him home. He lived almost another two years, still having TIAs. The blood vessels in his brain continued to narrow and get less blood, so not only did the dementia increase, he had many conversations with people who weren't there, and would slip back in time to the 30s and 40s. It was heart breaking at times, and there were times we couldn't stop laughing. A favorite memory is when Daddy was concerned about some horses he was carrying for in the mid 1920s. Trying to appease him, my sis decided to play the lady he worked for. Bad move! Daddy rolled his eyes and told her she was not "Bobbi" and he was not stupid! We laughed until it hurt.

    I think it would make a great story. The topic is bittersweet, and can be sad, but it's something so many of us can relate to today - taking care of our parents. And humor can be found in the smallest day-to-day scenarios. I'd love to read it. Good luck to you.

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    1. Many thanks for sharing your father's story, Felicia. Your story about the horses reminds me of when I woke one night to find dad roaming the house searching for a puppy which he said belonged to the man up the road. He was very anxious about this lost puppy and thinking to reassure him I told him it was all right, I'd taken the puppy back tot he man. "And how could you do that?" he demanded. "You've been in bed."
      Thanks for your encouragement.

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  6. This made heartbreaking reading. I am fortunate in that neither my, or my husband's, parents suffered this way (meaning we didn't either) but I did see how badly affected my lovely daughter-in-law was when her father went down that long, sad, route. You are brave to have put this up, and I did share it on FB and Twitter when it first came up but have only now had chance to comment. Stay strong, love long.

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    1. It is indeed a long, sad road but fortunately we do still manage to have a few laughs with dad along the way. Thanks for sharing on FB and Twitter and for coming back to comment on it, Linda. I appreciate it.

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