My Dad’s A Goldfish – Energy flagging

When I first moved in I was determined to get the house clean so whenever the Goldfish had a nap I’d get to work. I bought a huge array of cleaning products with which to tackle the bathroom. The shower has panels, none of which had ever been cleaned since it was installed – other than when the Step-monster went on holiday to her sister and I had a go at them. In those days, though, my energies were directed towards the loo itself and trying to dispel the stink caused by the bits of urine saturated cloth she left round the toilet bowl.

I scrubbed and rubbed and sprayed and scrubbed some more. It only looked slightly better. Tackling the windowsill, covered with bits of cloth (what is it with that woman and her bits of cloth everywhere?) was more rewarding and it came up gleaming. I bagged up rubbish from cupboards. I cleaned the living room. There was something satisfying about cleaning up the house but at the same time something strangely unreal about it – like playing house as a child. I still hadn’t fully absorbed that this was my life for the foreseeable future.

I ran out of energy before tackling the study. With little sleep each night, it became increasingly difficult to keep up my energy levels. The only way this was going to work was for me to give up all notions of work. If I didn’t have any writing projects I’d be able to catnap during the day when the Goldfish did instead of trying to focus on writing. I’d have no income, though the loss of my sense of self and what I am would be more difficult to deal with. On the other hand, there would be a lot more enjoyment in caring for the Goldfish if I wasn’t so knackered.

My Dad’s A Goldfish – Having fun

Looking back over my last few posts they seem unrelentingly gloomy. I have made it sound like life with the Goldfish was totally miserable when, in fact, we often had fun and shared lots of laughter.

I have gathered together quite an assortment of games including jigsaws and large-sized dominoes, Snakes and Ladders and magic painting sets. The jigsaws are wooden with large pieces. The base on which to make the picture has the shape of the required piece drawn on it to help put it in the correct place. The Goldfish quite enjoyed the one of a small child playing on a beach with bucket and spade. The child looked a bit like Wee-sis when she was that age – well, small human with blonde hair is enough for the Goldfish to see the resemblance. Unfortunately, on the front, just below the picture – so very prominent – is a notice saying the jigsaw was ideal for people with dementia. When the Goldfish read that he no longer wanted to do the jigsaw. I contacted the makers to let them know and they replied thanking me and saying they would take my comments on board when designing new ones. I hope they do.

The Goldfish loved playing Snakes and Ladders, especially with DH and would chuckle with amusement every time DH had to slide down a snake. For some reason the Goldfish could throw a six several times in a row, which pleased him greatly. I don’t know how he managed it so often. He’d furiously rattle the dice in the cup, tip it out – and there would be a six – frequently the exact number to take him to the bottom of a ladder.

Best of all, though were the balloons. These were larger and thicker than usual balloons. I wasn’t sure how he’d react to the idea of playing with them – too childish, perhaps? I batted one towards him and he reflexively batted it back to me and we were off. It was exhausting because the Goldfish never moved from his chair so whenever the balloon went off course I had to chase after it.

Sometimes he would bat it with his hand but other time he would head it or use his elbow – all moves he once must have done when playing football. Who knew? The great thing was that, even though he was sitting down throughout, he was giving his upper body quite a workout plus showing he still had pretty good eye to hand co-ordination.

Some evenings Wee-sis would come round and join in the fun. One night, the four of us were playing fast and furiously when a shot from the Goldfish sent the balloon up to the light shade, which was made of glass panels. There was a collective drawing in of breath as the balloon made contact and a panel came shattering down. Then, breaking the stunned silence, the Goldfish roared with laughter. Wee-sis and I looked at each other. “Can you imagine the reaction if one of us did that when we were kids?” I asked.

She nodded. “He wouldn’t have been laughing then – none of us would.” This only made the Goldfish laugh all the more.

I bought the various games hoping they might provide some stimulation for the Goldfish, never expecting all of us to find so much enjoyment in playing together. I still wonder about it. Many of them are things I used to play as a child; the Goldfish (who wasn’t a Goldfish then) played with me. Is there some shared memory of childhood fun? They are childhood games but adults played them with children – now, in our case, adults were playing the same games together.

My Dad Is A Goldfish – help at hand?

We meet with social services. The CC (Care Co-ordinator) had kept in contact so knows the Goldfish and his condition pretty well. She has recommended the highest amount of personal care available. It’s up to us how to spend it – as long as it came under the heading of personal care. There is no money for respite or for someone to take the Goldfish on an outing – over 65s apparently don’t need social outings. It’s age discrimination. If I had the energy I’d be wanting to campaign about this.

We’re delighted as we now have funds to buy in a lot more support. However, first we have to jump through some hoops, have meeting after meeting and we still don’t have extra help. First, we meet with the person from the local authority to learn how to fill in accounting forms. We could use the money to employ the Goldfish’s own personal assistants. If all this was happening a few years ago it would be worth considering and I’ve heard from others how life-changing it is to no longer have to depend on agency staff. However, the thought of advertising, interviewing and finding the right people and doing all the payroll and holiday pay was more than any of us could cope with.
The money from the local authority must go into a separate account. I meet with someone at the Goldfish’s bank. A great deal of form filling and time goes into this. I want a cheque book. She offers a debit card. It finally gets done, after I have politely refused to let the bank invest what little money the Goldfish has in something or other which will make more money than the interest does – though they can’t guarantee it will. I give the new account number to the local authority and suddenly several thousand pounds are deposited.

My joy was brief. It didn’t take long to learn that, although there are many care agencies in the area, they are not able to provide the care we needed. They advertise services, always stressing the ‘service-user-led’ aspect, which include sleepovers, waking nights – but they don’t actually have the staff available. I start to wonder if we’ll ever get to spend it!

The agency we already used for the morning shower and dressing can’t, unfortunately, provide a support worker to come in for the chunks of time we want. I spend hours on the phone ringing round. Two care agencies say they can help but we need to have more meetings to fill in more forms.

The boss of one agency comes to meet me and the Goldfish – who smiles sweetly at her and immediately falls asleep. We go through the forms. She explains they like to know as much as possible about the client so they can match support worker and client. The organisation wants to meet the needs of the client, puts the client’s wishes first, blah, blah, blah. She will let me know but warns they don’t have a big team and she’s not sure exactly when they will have someone for the Goldfish. She leaves to pack for her holiday, somewhere hot and sunny for the next two weeks. Finally, several weeks down the line we are told we can have someone on a Tuesday from 12 noon to 4pm. I recognise it as a ‘take it or leave it’ offer – I take it.

The second care organisation still hasn’t got back to me. By chance I meet someone whose husband used to attend the same day care as the Goldfish until he became too poorly. During our chat she mentions she employs someone from Alzheimer Scotland to come in on the day her husband would have been at day care. I know the woman and approach her directly to see if she would be interested and had any free days. She can do five hours – FIVE HOURS – on a Wednesday. I immediately get in touch with Alzheimer Scotland and we make the arrangements.

It has taken two months but now we have someone in on a Tuesday for four hours plus someone on a Wednesday for five hours, two days at day care from about 10.30 (depending on how quickly we can get the Goldfish ready) to 3pm and someone in for 45 minutes each morning for his shower. It’s not enough and no one can do nights but it feels like we’re finally making progress.

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.”