My Dad’s A Goldfish – It’s not just me!

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The Goldfish in his chair enjoying a visit from a neighbour’s cat.

I’m interrupting the chronology of the Goldfish’s lengthy stay in hospital to share some words from the chief nursing officer in Scotland, Professor Fiona McQueen.

Often I feel I am a grumpy old woman, always complaining about nursing staff (and often some doctors and care agency staff) who don’t listen, are not professional and seem to have little or no understanding of patient care. I was delighted, therefore, to read first in the newspaper and then on her blog that it’s not just me. Someone a lot higher up the food chain has also noticed, publicly commented and expressed a desire to see things change.

In her New Year blog post Professor McQueen gives examples of the kind of bad practices she has witnessed during 2015 and writes: “I expect registered nurses to speak to all patients and their families with unconditional positive regard and never again will a registered nurse say to a patient, ‘if you wet the bed we’ll call you pishy-pants

“At all times I want nurses and midwives to put their patients first. No skipping off for a break when relatives need to speak to you or, worse, when patients should be having their meals served.”

As you might expect there has been a fair amount of outrage at her words from nursing staff and from their union. Gordon McKay, a registered nurse and chairman of Unison in NHS Ayrshire says: “My experience is that nurses work unpaid, way beyond their contracted hours to provide world-class care rather than ‘nipping off for breaks’ as is claimed, and that nurses speak to patients and relatives with the greatest of respect and kindness…”

Well, Mr McKay, threatening to call a patient pishy-pants is neither respectful nor kind.

The outraged ones don’t seem to have noticed Fiona McQueen also says: “I have met some outstanding nurses and midwives and hear of examples of care being delivered that is so good it’s breath taking.”

This is something many of us on this and other blogs have discussed and we’ve all said that there are nurses (and carers) who are wonderful and do a fantastic job – but they should not be the exception to the rule. I am sure many good nurses must be cheering (even if they have to cheer in private) with relief at Fiona McQueen’s words. How disheartening it must be to see colleagues bring your profession into disrepute.

Professor June Andrews, a registered nurse and director of the Dementia Services Development Centre at Stirling University has given her support to the chief nursing officer’s words. She says: “As a hard-working nurse, knowing that other nurses and midwives who, not for want of resources but because of attitude, bring down the profession, I would be glad to have them outed.”

The day after the story appeared in a national newspaper Fiona McQueen issued an apology saying she had not intended to offend hardworking nurses. I don’t think it IS the hardworking nurses who will be offended and I salute Professor McQueen for telling it as it is and for wanting all nursing staff to work together to eradicate bad practice.

You can read Fiona McQueen’s blog post here.

My Dad’s a Goldfish – Transient ischemic attacks (TIAs)

The Goldfish when a young lad with his brother and sister

The Goldfish when a young lad with his brother and sister

Transient ischemic attacks are fairly common in people with dementia. The signs and symptoms are very similar to those of a stroke: slurred or garbled speech, difficulty understanding others. On their own those aren’t particularly unusual in people with advanced dementia but there’s also weakness or paralysis in face, arm or leg, usually on side of the body and loss of co-ordination and balance.
When the Goldfish first showed symptoms of having a TIA it was pretty scary and, as with almost everything else with dementia we were always one step behind in our knowledge and understanding.
He slept for most of the day and although he woke up in the early evening he seemed more than usually ‘out of it’. I suggested a game of Snakes and Ladders, which he usually enjoyed – especially if he was beating the DH and seeing him slide down the snake. I noticed he couldn’t hold the shaker for the dice and he seemed to leaning over to one side, unable to bring himself upright. His eyes were unfocussed.
The DH called NHS 24 – the out-of-hours service. He’s much better at doing this kind of thing than I am. I just get cross at all the questions when I just want them to send a doctor AT ONCE! The DH is patient and somehow manages to make them understand the seriousness of the situation.
They did say a doctor would come out to see the Goldfish and he arrived in less than half an hour. As I ushered him into the living room the Goldfish looked up, gave the man a huge beaming smile and said: “Hello, how are you? Nice to see you.” The clue, I guess, is in the word transient.
The doctor and seemed not in the least put out that the patient he’d probably expected to find at death’s door was bubbling with good humour and bonhomie at having a visitor. He checked the Goldfish thoroughly and confirmed what we had begun to suspect that he had had a TIA.
Many more were to follow – sometimes while he slept, sometimes during the day – and we learned to manage but each one meant the Goldfish slipped a little further down the dementia slope.

My Dad’s a Goldfish – finding night help

The Goldfish as a young lad

The Goldfish as a young lad

The agency we use for personal care couldn’t provide night cover but I thought it would be easy to find one which did. Silly me! Despite there being so many care agencies most of which advertise sleepover and waking nights when I phoned to ask about the service it turned out they didn’t actually provide it. Some sounded genuinely regretful at being unable to help – staff shortages – others sounded like they couldn’t care less. One or two, while not quite laughing out loud at my request made it sound like I was asking for the pot of gold at the end of the rainbow.

The person who answered the phone at one agency sounded like it might be possible but couldn’t say for sure. Her manager would call me when he came in. He did call back. “I’m afraid we can’t provide anyone right now. We are recruiting, though, so it could be possible in three to four weeks,” he told me cheerfully. I wasn’t sure if either the Goldfish or I would still be alive by then. I did ask how he could recruit and train staff within that kind of time frame. I should have kept my mouth shut because he did not, as promised, call me back with details of a nursing agency.

I did try nursing agencies. I didn’t care about the cost. None could help. Although Social Services are not allowed to recommend one agency over another the CC did whisper a couple of contacts. Maybe I copied the numbers down wrongly but no one bothered to call back. Perhaps the desperation in my voice as I gabbled voicemail messages put them off?

A friend gave me a contact for an agency of which I’d heard but hadn’t considered because it mainly supported people with learning difficulties. I rang the number. The person who answered sounded so positive they could help I almost wept – actually, I think I did. She promised she would have someone call me back next day – and actually rang me again to confirm this was going to happen. And it did. I was delirious with joy as we arranged dates and times for meetings to discuss what care the Goldfish required. Care plans, person-centred support, interviews: I ignored the first faint tinkling of alarm bells – someone was going to be able to come and stay for a couple of nights. I was going to get a break.

The Goldfish slept throughout the meeting/interview with the manager of the care agency, who turned up without the ‘very nice chap’ who was going to do the shifts but couldn’t make it today because… I think he was doing some emergency cover. She asked lots of questions about his routine, what he liked to do, about going to the toilet, evening routine, bedtime routine. I answered but kept trying to explain nothing was routine any more. She nodded and made sympathetic noises. My heart began to sink. But, not to worry, we’d cried out for help and it was coming – soon. Was it what we wanted, though?

Of course, it bloody wasn’t. The Goldfish was, understandably, anxious about the stranger who’d come to stay and wouldn’t settle. The very nice chap who turned up didn’t want to upset him by insisting he went to bed so the Goldfish stayed up until four o’clock in the morning. Slept most of the next day, stayed awake until four or five next morning with the nice chap. We kept telling ourselves it would take a wee while to establish a routine. Aagh!

My Dad’s a Goldfish – a new kind of day care

Image200714144427-000The Goldfish has been offered a place at the day centre in the next town two days a week. It’s a pilot project designed for people in the later stages of dementia who are no longer able to benefit from the traditional day care service. We’ve known for some time the Man at the day centre isn’t happy at how little the Goldfish can participate so, despite having to spend a couple of hours driving him there and back each time, we were pleased.
It’s a pilot project designed – they tell me – to focus on sensory stimulation as a means of communication, including touch, smell, hearing, taste and sight. Tailored to each person’s individual needs and abilities attention will be given to nutrition and the programme will also help with elements of personal care which families may find difficult to do.

It does sound wonderful – but why must it be only when a person reaches the last stages of dementia they are considered eligible? Well, of course, we know the answer – money. Why is it that despite knowing the importance of mental stimulation, physical activities, socialising for people with dementia funding is not made available for those in the earlier stages? Answers on a postcard – directed to Government, not to me.

I take the Goldfish along for a session to see how it goes. It’s all very wonderful with lots of books, games, soft toys – including a cat which breathes (or would if it wasn’t broken. I’m quite glad of this as it seems a bit creepy to me) and a baby doll, the same weight as a real baby. It was like the staff had been let loose in a sweet shop. No sooner was the Goldfish engrossed in a picture book than someone brought him something else. He was enjoying a game batting a balloon backwards and forwards with the husband of another service user when a member of staff shoved another book at him. I fear sensory overload if it doesn’t calm down a bit.

I had to sign lots of permission forms (we will be given photos of the Goldfish enjoying himself and they might be used in research material made public) and go along for an interview with the researchers. I think the idea is to get a baseline picture of the Goldfish before he attends and then compare it after another interview later in the project.

Unfortunately, I alienate the researchers from the beginning by querying the first question on the form as I felt it was ambiguous. I also questioned what they meant when they asked how often the Goldfish smiles without any outside stimulus. I mean, he doesn’t sit and smile to himself. He smiles if people come in and speak to him; he smiles when someone jokes with him or he sees something funny on television – but he doesn’t sit smiling inanely to himself.
I’d been given a copy of the questionnaire while we were doing the interview but when I asked if I could take it to let Wee-sis see it they refused saying it was “our research tool”. Humph!

My Dad’s A Goldfish – The OT visits

While the Goldfish had his post-breakfast post-shower nap I’d planned to try to get some writing done. Instead I had to wash his bedroom floor and the bathroom floor, both of which were swimming – and change his bedding.
By then, it was time to wake him for lunch. He had worked up quite an appetite during his ‘busy’ morning and ate a chicken sandwich, yoghurt and was still eating grapes and orange segments when the Occupational Therapist (OT) arrived. I’d made the appointment because the Goldfish was finding it increasingly difficult to lower himself onto the loo seat – and get back up again. There’s a grab rail already in place but it is no longer enough and I was hoping something could be done to raise the height of the toilet seat.
Of course, nothing can be provided until an assessment has been done. I have to say we have been very lucky in that whenever we have asked for help, we’ve received it pretty quickly – well, apart from finding someone to sleep over some nights.
The Goldfish is always happy to have visitors and, although he couldn’t really follow what she was saying he chuckled away at appropriate moments. He was slightly confused when she asked him to walk to the bathroom and sit on the loo, insisting that he didn’t “need to go.”
The OT had obviously decided to do a pretty full assessment so, apart from the toilet seat problem, she had the Goldfish sit and stand at the kitchen table, walk to the bedroom and show her how he got into bed. She was most impressed when he demonstrated how he sits on the edge and swings his legs up. She said: “You’ve got great strength in your core muscles. Not many people your age – even younger – could swing their legs onto the bed like that. Wonderful core muscle strength.” This amused him greatly, so he did it a couple more times.
We are now to have a contraption thing – I believe it does have a proper name – which fits over the toilet seat, making it higher. This should make it easier for the Goldfish to sit down and stand up, though it will take a bit of time to get used to it.
In the evening the Goldfish was awake though a bit ‘out of it’. He fiddles with things, though never with things he is supposed to fiddle with. I bought a fidget thing designed for people with dementia to bend and twist and fiddle with but he ignores it. In fact on one occasion I noticed he had stuffed it under his jumper; I think to hide it. Tonight he fiddled with an emery board – not trying to file his nails but to peel it apart. He also had a happy time applying hand cream to his hairbrush.

My Dad’s A Goldfish – Diary entry (February 2014)

“Last night he was only up a couple of times and used the commode – no pee on the floor. Tonight, he has been up twice already, peed all over the floor in the bedroom and is terribly confused. He seems to be worrying about something but can’t articulate what it is. He loses his words terribly at night and can’t say what he wants to say. He keeps trying, which is frustrating for us both.

Fourth time up already. He’s like a jack-in-the-box tonight. He went into the study and sat on the chair by my computer (which is where the Step-monster had her computer). My heart sinks when I hear his bed creak. I suppose it’s not as bad as it seems as it’s not yet midnight. If I feel he’s settled by 1am, I think of it as a good night.

He’s had a dram, two herbal sleeping pills (I’m sure they only have a psychological effect so won’t work for the Goldfish, but I’ll try anything), toast and butter – no sweets, no chocolate, no sugar. Here we go again!

He keeps going in the study so I think he is looking for the Step-monster who spent a lot of time in there. It used to be his room – one wall taken up by his books, his desk where he used to work on Clydesdale genealogies for local breeders – then she took over with her computer and television. He’s up again!

I have no idea what to do next. Phone Alzheimer helpline? I don’t know where he is. I think the study again and this time he’s shut the door. Better go.

Nightmare. I don’t think he’ll sleep. His mind is all over the place – or, in his mind, he is somewhere else. Said he was going to sleep in the study until I pointed out there wasn’t a bed in it. We’ve managed ten minutes back in bed – is it possible we’ll get any longer? I’ve tried intercepting him before he gets out of the bedroom but nothing works. I’ve sat with him in the living room, in the kitchen.

Thinking about the support we need, I’d say I need a complete break of around three to four hours a day, especially if I’m ever going to get any writing work done, and a couple of consecutive nights off but what worries me about that is how it will affect the Goldfish having someone else in the house. And would I trust them to be kind to him?

He’s wandering again. I heard the study door squeaking and now he’s in the toilet, door firmly closed. I’m going to wait for a few minutes.

He’d shit himself before he reached the toilet so twenty minutes plus to get him washed and into clean pyjamas and back into bed. His stomach rumbling ominously as I said goodnight for what felt like the hundredth time.”