Lying to the ones we love.

Thought provoking post from Kay Bransford on whether or not honesty is always the best policy when caring for someone with dementia.

Dealing with Dementia

Two things that should be a part of every caregiver bootcamp:

1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
2. There are times when honesty is painful for everyone when a…

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My Dad’s a Goldfish – For John M

A friend has recently gone into a care home. He has a rare form of frontotemporal dementia. It is progressive and irreversible. The brain’s frontal lobe controls planning, judgment, emotional control, behaviour, inhibition and its temporal lobe affects language, along with emotional response and behaviour.

We have been friends for over fifty years – from when he used to walk me home from school carrying my books. We did our homework on the phone. I helped him with English, he helped me with French. We shared so much over those growing up years. Our lives went off in different directions but we always kept the connection – until very recently.

He can no longer take care of himself. He is only sixty three.

I owe him a great deal for the windows onto new worlds he opened for me. I’d like to think I opened some for him, too. This is for him.

For John M

My family went to Fleetwood or
Scarborough for holidays but you –
you went to France, brought back
snails in a tin. We ate them
with garlic butter in the house
on Edinburgh Road. They were
chewy but delicious.

You played me Debussy’s
Clair de Lune, explaining how
he broke harmony’s rules.
Not a pianist, I didn’t understand
but loved the music.

You gave me Francoise Sagan novels.
I felt so grown up, worldly wise.
Introduced me to
the little sparrow, Edith Piaf,
to Collette, Camus:
opening windows onto new worlds.
I gained much from your love
of France and all things French.

Now, with clumps of protein
gumming up your brain,
you don’t read, conversation almost gone,
thought processes wrecked
you can’t remember
all you gave me.

I hope I let you know
before time ran out on us
how important you’ve been
and how thankful I am.

I think, though, you might
still remember those snails
and carrying my books home
from school.

My Dad’s a Goldfish – In the garden centre cafe

I know it has been a very long time since I posted on this blog. I haven’t completely abandoned it but life – various writing projects, a temporary job over the summer, a new book out – has got in the way. I am now, finally, working on pulling the Goldfish blog posts together to form a coherent (I hope) memoir.

I have also been writing more poems – I call them my dad poems. I’ve posted one or two here in the past and this is a fairly new one although I wrote a blog post about the event a while ago. I’m experimenting and really would appreciate comments on whether it works or not. Has the story been pared down too much? Does it work as a poem or does the story only work as prose?

In the garden centre cafe
You only manage one bite of banoffee pie
before you need to ‘spend a penny’.
I push the wheelchair to the toilets
but you want to go in alone
totter off, stick in hand while
I wait.

And wait.

Should I bang on the door?
Find someone to break it open?

Finally, you emerge, sadness
in the eyes which meet mine.
You hand me
with quiet dignity your underpants
sodden.
I place them with equal care
in my handbag.

You settle in the chair. In the loo
I use up all the hand towels
to dry the floor.

When I come out you have forgotten. Sometimes
I’m glad for the dementia. We return
to the banoffee pie; your favourite.

 

My Dad’s a Goldfish – A dangerous tilting to the side

Sometime after the Goldfish died we put his house on the market. The solicitor emailed me after the photos had been taken for the sales brochure. At the end of the usual solicitor-speak explanation of how things would proceed he added, ‘There appears to be a boat winch bolted in place in the hall cupboard?’ Like maybe I didn’t know.

I emailed back, ‘Don’t all bungalows come with their own boat winch?’ He suggested we remove it before people came to view the house. He didn’t have much of a sense of humour.

Why did we have a boat winch bolted to the floor of the cupboard in the hall?

It all began when the Goldfish started to tip to one side. He seemed quite unaware of the fact he was tilting over.

We’d encourage him to sit up straighter but there was no response. We tried propping him up with cushions stuffed down the side of his wheelchair but that didn’t work either. No sooner was he propped up than he started sliding over to one side again.

Driving anywhere became a nightmare. I’d look in the mirror, see he had tipped over, head almost touching the floor, stop the car and hoist him partly upright, rearrange the cushions to support him and drive off. Ten minutes later, I’d have to repeat the process.

We spoke to the Occupational Therapist. I think I’ve said in previous posts we were so lucky with our OT – she was fantastic. She really cared about the Goldfish. She should be cloned. She immediately referred the Goldfish to the specialists from Glasgow’s Southern General Hospital (succeeded by the Queen Elizabeth University Hospital). They visit the various regional hospitals and the Goldfish was lucky to get an appointment almost immediately.

The DH took the Goldfish to his appointment and was very impressed by their can-do approach. It seemed our problem was by no means unique. They could help. The only drawback was that, even when the wheelchair was ready, the team would not be back in Dumfries for weeks. When the DH offered to drive up to Glasgow with the Goldfish, they, seeing our desperation, agreed.

The DH was so excited when the Goldfish tried his new chair he texted me to say it was a miracle – he could sit up straight again. The chair was wonderful. It was easy to manoeuvre except for getting it in and out of the house. Neither Wee-sis nor I could do it. The steps were shallow and we had a ramp but the chair was unbelievably heavy. We did try. Coming down, even backwards was terrifying. I don’t know how the Goldfish felt about it – he seemed remarkably calm. One tiny slip and I knew the chair would be on top of me.

We had to find a solution or acquiring the wonderful new chair would curtail the Goldfish’s outings unless the DH was always going to be around to take the chair out and in the house. Wee-sis and I could manage everything else, including winching the chair into the Doblo. It was the vehicle winch which gave us the idea – so we fitted a boat winch inside the hall cupboard, which was directly opposite the front door.

It worked a treat.

Voting is now OPEN #BloggersBash

I’m so honoured and touched that My Dad’s a Goldfish has been nominated in the Annual Bloggers Bash Awards in the inspirational category. Many thanks to whoever nominated me. Many fabulous blogs have been nominated in the various categories – well worth checking out. Voting is now open.

Shelley Wilson Author

VOTING IS NOW OPEN FOR THE BLOGGERS BASH AWARDS (ABBAs)

This is it. The wait is finally over!

The FOURTH Annual Bloggers Bash Awards 2018 are now OPEN FOR VOTING

You can vote HERE.

We had a HUGE number of nominations, so thank you to everyone who took the time to nominate your favourite bloggers.

Voting Closes at midnight on April 30^th (GMT). The winners will be announced on May 19th at the Bash in London. If you can’t make it along to the event don’t worry, we will put a winners post out on the evening of the same day. Although we have pingbacks to all the winners blogs it would be best for you to check back to see if you won.

TO THE VOTERS – Choose carefully, you can only vote ONCE per award. There are 9 awards (so this is a long post). Yes,

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My Dad’s a Goldfish – pushing a wheelchair isn’t easy.

When I was doing my Threave Castle circuit today, which I wrote about on MarySmith’sPlace, here I met a woman pushing a wheelchair. The path is supposedly accessible to wheelchair users but the expression on her face clearly said ‘accessible it isn’t. I felt for her, remembering how I struggled on it three or four years ago – and nothing has been done to maintain it, let alone improve it, since.

I took the Goldfish down to Threave Castle to see the Ospreys, which were nesting there. He was always a keen bird watcher and was still able to identify and name them. It never failed to surprise me what things were kept in his memory bank, and what slipped away. His interest in birds started when he was a young boy, when he did as many young lads did in those days, he collected eggs, only ever taking one egg from a nest. Perhaps those  memories laid down in childhood are the strongest.

The path goes across farmland and there is often stock in the fields so there are quite a few gates at junctions with fields. I scarcely notice them when walking on my own but it was a different matter when having to negotiate them while pushing a wheelchair occupied by a fairly heavy man.

Eventually, we worked out a reasonably effective method. I pushed the chair as close to the gate as I could, leaned over, opened the gate and pushed it away from us. The Goldfish helped by prodding it further open with his walking stick then, as he removed his stick, I rushed through before the gate closed.

From time to time the Goldfish offered to get out and walk to give me a rest! I assured him it was no bother – though it was hard work, much harder than I’d ever anticipated. Short stretches of path were cemented but mostly it was rough path with unexpected dips and hollows.

As we round a bend and the castle came into view, it was worth the effort as the Goldfish was delighted, saying he’s never been so close to it before. I vaguely wondered if I could get him into the wee boat which ferries people across but dismissed the idea. We moved on to the Osprey viewing platform where every year volunteers set up a telescope trained on the nest across the river. We are very proud to have ospreys nesting here and Wee-sis and I are regular visitors in the evening, as are lots of local people so it is quite a social outing.

At first the Goldfish couldn’t see anything but after the telescope had been adjusted I heard him exclaim and knew he’d seen the bird on the nest. The Goldfish looked round at me, beaming with pleasure.

We returned to the car park – it was much harder work going back as there is more uphill work but we managed. I mentally thanked my Pilates teacher for my strong core and decided it was a great workout for my arm muscles.

A large banner advertising the ospreys was hanging outside the visitor centre. The Goldfish read it out aloud then turned to me and said: “Ospreys, my, they would be something to see.”

My Dad’s a Goldfish – New Year, Old Post

Happy New Year!

Lots of blogger friends use this time of year to look back at the stats for the previous months on their blog – which were the most popular, which worked, which didn’t do so well. I thought about it but I because I so hate numbers I dismissed the idea pretty quickly.  I decided instead to have a look through old posts from early in this blog’s life and share one which I particularly enjoyed writing – because it was such a happy day – and which didn’t get many views as so few people followed the Goldfish back then.

A friend invited the Goldfish to visit his farm so he could get up close and personal with cows. Did I mention, before retirement the Goldfish was an AI man – artificial insemination? Of cattle – that is. I smile writing that because living here in what was the heart of dairy farm country saying AI is enough, everyone understands you mean cattle insemination but once, when the Goldfish was in hospital, the doctor asked the DH what the Goldfish’s job had been. DH said he had worked in artificial insemination. The doctor, looking a bit startled, asked: “In humans?”

Anyway, when the Goldfish was the AI man he went to my friend J’s father’s farm. J always remembered how nice the Goldfish was to him in those far off days and he invited him to visit – only someone connected with farming would understand what it would mean to the Goldfish to be amongst cattle again.

It was a dreich day but dry. J had fastened a sort of carriage thing – made from an oil drum – to the back of his quad bike. It had a seat – quite small as it’s mainly used by his granddaughter. We managed to install the Goldfish in this and I sat on top of the quad bike – feeling grateful for my years of riding sidesaddle on the pillion of motorbikes in Pakistan – and off we went. My years of being the AI man’s daughter mean I like cows and have no fear of being amongst them and the Goldfish was delighted.

J kept up a running commentary about everything we saw and whenever I looked back at the Goldfish, who couldn’t actually hear a word being said, he looked happy, alert and interested. In one field we stopped amidst the cows and J asked the Goldfish what breed he thought they were. The Goldfish studied them for a moment and said: “They look like Ayrshires.”

J nodded. “They do, don’t they? In fact they are Montbeliard cows, originally from France,” he said. A discussion about the breed and milk yields followed and it was so good to see the Goldfish totally engaged in the conversation.

There was a bit of a problem when J stopped the quad bike back at the house and we tried to get the Goldfish out of his carriage. He was stuck fast and it took our combined efforts to prise him upright and then he started quivering from top to toe, all his muscles in spasm. I was terrified he would topple over and didn’t see how we were ever going to get him out and safely on the ground. Finally he was able to stand upright and somehow J managed to get him down and he tottered into the house, none the worse for his shakes.

J’s wife had put on a lovely afternoon tea and the Goldfish tucked in with gusto, scoffing pancakes and scones with jam and cake and several cups of tea.

Driving home I asked what the step-monster (of course I didn’t call her that. I gave her real name) would think when we told her he’d spent the afternoon driving over fields on a quad bike.

“Oh,” he said, “have you been on a quad bike?”

“You have, too,” I said.

“I don’t remember.”

Even so, it was a really good outing. With these kinds of trips out and interaction with other people talking about things with which the Goldfish has a connection, it’s the lasting feel-good factor which is more important than the fact he forgets the event almost immediately.

My Dad’s a Goldfish – remembering and celebrating

As the third anniversary of the Goldfish’s death arrives I wondered how to mark it on the blog. I could write about how much I miss him still and how often I think of him. I could write about how I wish things had been different for him; that he hadn’t had dementia, hadn’t  been abandoned by his wife at the worst possible time in his life.

But, I’m not. Instead, I’m going to share some photos from his grandson’s graduation. The Goldfish might not have understood what a Masters in Biomedical Sciences means (not sure I do!) but he would have been so proud.

He always showed great pride in any of my achievements. He attended everything from my graduation to my first book launch. He turned up at my poetry readings even read my poems, even though he was of the ‘proper poetry ought to rhyme school’ so I know he would be (perhaps is?) incredibly proud of his grandson’s achievement.

Masters graduates, 2017

Robert and David

Says it all, really!

 

Proud parents with scientist son!

Oh, the Goldfish would have so enjoyed the day (well, if it had been a bit warmer!) and been so very proud of his grandson.

 

 

 

My Dad’s a Goldfish – Don’t ask, don’t get

 

It is truly astonishing the amount of equipment required to allow someone to continue living in their own home when the person has dementia combined with mobility problems and other medical conditions.

Most things are actually available through social services or the NHS but it’s not quite as simple as putting in a request and receiving what is needed. For one thing, you don’t know what you’re going to need at different stages. The handrail by the back door, which was helpful when the Goldfish started to become a bit tottery but could still manage steps with his walking stick in one hand, was utterly useless when he had to use a walker on wheels. Try getting that, and him, down steps!

Also ‘they’ don’t always tell you what is available even though they are the ones supposedly trying to keep people living independently in their own homes. And sometimes what they provide is not what is needed.

The wheeled walker. Can you imagine getting it and the Goldfish down the steps at the door without mishap? And can you picture the Goldfish sitting on it laughing uproariously as I ran up and down with it?

 

The Goldfish couldn’t get to grips with the NHS model of walker, which doesn’t have wheels and can’t be pushed along the ground so we bought him a walker on wheels. We were advised to go for the four-wheel type, which has a lidded storage box which doubles as a seat if the person needs a rest. The Goldfish thought it was hilarious to be pushed around the house while sitting on his like some god-like creature while I sweated and built up arm muscles which would have been useful on a building site. He also once mistook the lidded box for the toilet – but we’ll draw a veil over that.

When the Goldfish began to go walk-about at night, one instance involved the police who reported it to social services. We were given a door alarm and he was also – after being found unconscious on the floor one morning – given a fall detector.

Then came the time when the Goldfish couldn’t walk any distance and we requested and were provided with a manual wheelchair. We still had the crazy performance of getting him down the steps and into the car, out of the car at our destination and into the wheelchair. By the time they were able to provide a banana board, which fits between the chair and the car seat, the Goldfish, although physically able no longer had the mental capacity to understand what he should do.

We bought various bits and pieces to help – a thing which hooked on the door so the Goldfish could pull himself in could double as a tool to smash the window if we had a crash. Finally, we bought a vehicle

It was lucky the Goldfish had some savings and could afford to buy this vehicle which allowed him regular outings – so many people arre not in such a fortunate position.

 

which was adapted to take the wheelchair up a ramp into the back. I am well aware many people are not in a situation to be able to do this. I guess their Goldfish can only enjoy outings within chair-pushing distance.

We were so lucky we had an exceptional occupational therapist who visited whenever we needed help. She recommended the handrail in the early days and, later, a raised toilet seat, a handrail by the loo, had joiners in to remove the raised lip in doorways and to re-hang the bedroom door so it opened in such a way we could wheel the chair in. It meant dad’s dressing gown hook was now on the outside of the door! But life was much easier when we didn’t have to dodge around a door.

The Goldfish rather enjoyed using the stand aid – gripping the handles like he was on a motor bike!

One of the things which made the biggest difference to our lives was the stand aid, which enabled us to help the Goldfish out of his easy chair and into his wheelchair. We’d seen one used in the hospital. The DH said we needed one for home use. I think they just laughed at his request in the hospital but our wonderful occupational therapist was soon on the job and managed to obtain one for us. Without it, we were liable to put our backs out plus the Goldfish was likely to end up with pressure sores if he sat in his chair all day every day. Again, it was a case of asking for what we needed and again, I’m so aware that people who need such an aid probably don’t receive it because they don’t know about its existence, don’t know it is available and so don’t ask. And probably don’t have the exceptional occupational therapist the Goldfish had.

A major problem was that the support workers who came in would not use it without a second person helping – health and safety! This meant one of us always had to be on hand, which rather undid the benefit of having a carer in to give us a break. I read and re-read all the literature which came with the stand aid and nowhere did it say it required two people to operate it.

The second invaluable piece of equipment was a hospital bed. Getting the Goldfish into and out of bed had become a nightmare. By then he could do little to assist us and the strain on our backs was dreadful, plus it was horribly undignified for dad to be heaved around like a sack of coal. The bed had an air mattress to prevent pressure sores, it went down and went up, and the top could be raised, as could the bottom part if he needed to keep his feet up. I’m sure it could have made the bedtime drinks if we could figure out the programme!

We would not have had any of those aids had we not asked. No one told us they were available for use at home. Obviously, I can only speak from our experiences in south west Scotland – things may be different elsewhere (though I suspect not any better) but I’d advise anyone caring for a relative at home to ask and keep asking for anything and everything which will make life easier. They want to allow people to stay in their own homes (cheaper than residential care) so they need to make it easier to do so.

The other thing we were able to access for the Goldfish was a new, made to measure wheelchair – but this post is long enough so I’ll keep that story for next time.

My Dad’s a Goldfish – And now for something different

And by different, I mean totally unrelated to dementia or Goldfish. As followers of this blog know I have been posting rather infrequently over the last few months. One excuse reason has been that I’m in the process of converting the material from this blog into a proper memoir.

I have another excuse – I’ve been working on the publication of a short story collection – and it’s now up there  as an ebook on Amazon.

Here’s the back-of-the-book blurb:  Shot through with flashes of humour the stories here will entertain, amuse, and make you think. Mary Smith’s debut collection of short stories is a real treat, introducing the reader to a diverse range of characters in a wide range of locations. A donkey boy in Pakistan dreams of buying luxuries for his mother; a mouth artist in rural Scotland longs to leave the circus; a visually impaired man has a problem with his socks; and a woman tries to come to terms with a frightening gift – or curse.

At only 99p (just over a dollar if you are across the Pond) it’s so much cheaper than a cup of coffee – and you can re-fill re-read it as often as you like.

It’s already got a couple of reviews on Amazon UK, one of which, on LindasBookBag blog,  had me wearing a huge grin all day. You can read it here. There’s also a sample story on Marcia Meara’s blog.

The ebook is available now on Amazon.

I promise I’ll get back to the Goldfish and dementia in my next post but I’m so excited at getting my new book out – first fiction I’ve written for ages – I wanted to share with everyone.