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 – night time woes

Image200714143218-000I am so ashamed. I shouted and swore at the Goldfish. It was two o’clock in the morning and, in my defence, I hadn’t slept more than a couple of hours for the previous few nights. It brought home to me just how desperate I’d become to have a few nights’ sleep – in my own bed.

Wee-sis and the DH do sleepovers when they can, but one night at home in my own bed is not enough. I had to accept we needed more help.

Five hellish nights in a row are way too much. During the days I’ve done my best to keep up with washing, cooking, cleaning, trying to promote my books, find review sites, keep up some semblance of a working life as well as entertain the Goldfish when he is awake. Getting him ready for bed is a performance as he doesn’t help much with undressing, though if he decides he’s going to do up his pyjama buttons, it can take a very long time.

Diary entry: “Three times so far and he went to bed less than two hours ago. Persuaded him to sit on the loo but it was an unproductive interlude. Back to bed, walking a snail’s pace. I don’t understand how he can get out of bed with such agility and trot about the house – well, shuffle, he doesn’t actually trot. But he can shuffle at speed – until I’m guiding him back to bed then he can scarcely move. And how is he still awake? He’s had a dram, two codeine phosphate, and a sleeping pill. There’s really no pint in giving him the sleeping pill as it clearly doesn’t work and I don’t want to increase the dose. “

Next night: “Back in bed after second time up. PJ trousers wet but can’t find where he peed – not in the commode, not in the loo. Lot of wriggling around and the bed is creaking. Get up to investigate and find him peeing at the side of the bed. Changed PJ trousers again, mopped the floor. Told him I didn’t understand how he could deny needing to go to the toilet then pee all over the floor a few minutes later. He looked puzzled. I got him into bed. Apologised for shouting. Five minutes and later he’s up again. I rush through, grab the pot from the commode and he did a HUGE pee – have no idea how his bladder can hold so much – and he’s on water tablets!

If it wasn’t toilet problems he would wander the house, usually ending in the study where he would try to close the door of the computer desk. Unfortunately, my PC sticks out and the door doesn’t close – not that such a minor detail stopped him from trying repeatedly.

From my diary, same week: “Last night was terrible. The Goldfish was up so often I lost count. I’d settle him in bed, say goodnight and before I’d reached my room I’d hear him getting out of bed again. He said he needed to go to the loo – although from the state of the floor it was clear he’d already been – just not in the right place. Walking back into his room I told him to stop before he walked into the puddle. He carried on with dogged determination. I yelled. He carried on and then, as his feet came into contact with the wet, he stopped. “For fuck’s sake, I told you to stop.”

He swivelled round to look at me. “Oh, my,” he said in that tone of voice he used when I was a child doing something I shouldn’t. I guess swearing at my father is one such thing I shouldn’t do and I don’t think he’s ever heard me utter anything stronger than a bloody or a bugger. I apologised, got him into bed, mopped up, said goodnight and crept back to my own bed feeling very, very ashamed of myself.

Then, today, I was talking to someone in the supermarket, looked up and did a double take when I saw my son walking towards me. I’d totally forgotten he was coming home from university for the weekend. DH, Wee-sis and I sat down to agree to find an agency to provide someone to stay for two nights a week.

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!