My Dad’s a Goldfish – Personal Care

The new shower looks good, there’s a shower chair as well so the Goldfish doesn’t have to stand up and it will be easy to keep the shower area clean. The Goldfish says he likes it but can’t remember if he has actually used it. Step-monster says he has.

I call social services and the CC comes to assess the Goldfish’s care needs and how they might be met. I said I thought he needed someone coming in for personal care – washing, dressing and shaving in the mornings. The step-monster lied through her teeth, telling the woman everything was just fine and they could manage perfectly without any help. At one point I cut in and pointed out this whole process was started when she was crying she couldn’t cope and wanted to send dad to the residential home for a shower. She just smiled and said she thought they were managing very well.

I walked the CC to her car, apologizing for the step-monster’s refusal to accept help. She said not to worry, she’s seen it all before, step-monster (she didn’t call her that, of course) is in denial and will come round.

The sun shone for our outing this week so I packed a picnic and went for a run on country roads and through part of the Galloway Forest to a lovely riverside picnic place. The Goldfish remembered driving those roads when he was working and commented, as usual, on the trees: not the Sitka Spruce in the forest, which he dislikes as much as I do, but on the broad-leaved trees by the roadsides. He always liked trees and it is lovely that he can still identify them, hasn’t forgotten any of their names and takes real pleasure in seeing them.

When we started to drive home he lost his bearings and didn’t recognise the road. “Are you sure you know the way?”

“Yes, dad, I know the way. We’ll reach the main road soon.”

“Oh, well, that’s all right then. I’m glad you know where you are going.” He looks anxiously out of the window. “Are you sure you know the way?”

“Yes, dad….”

The moment we came to a junction for the main road he knew where we were and relaxed.

I know it was a hot day, which may account for it, but there was a distinctly whiffy aroma in my car, which lingered even after I took him home. Mentioned it to Wee-sis who said she was mortified when she took the Goldfish for a chest x ray recently. “When he took his shirt off, the smell was terrible. He hadn’t had a shower that morning and I wouldn’t be surprised if he’d not had a proper wash for days. I don’t believe he is using the shower at all.”

The Goldfish would be mortified if understood his lack of hygiene. Finally I plucked up the courage to speak to the step-monster about the Goldfish’s personal hygiene. She said he has a good wash every day. I said: “He smells.”

“Do you mean, do you mean… Do you mean his pants?”

“No, I mean body odour, an unwashed, unpleasant dirty body smell.”

“Well, he has a good wash at the sink every day.”

“Why doesn’t he have a shower? What’s the problem with the shower?”

“He doesn’t want to use it.”

“You mean he can’t use it. It really is way past time to have someone in to help with showers.”

“I don’t want a lot of strangers coming in to the house.”

“But if you can’t manage to help dad have a shower we need to get someone in.”

“Would it be male carers?”

“I don’t know. We’ll have to discuss with the CC and see what she can do.”

“It’s just – well, you know your dad likes the ladies – it would be awful if he did something or said something inappropriate.”

Yes, the Goldfish always did like women around him and had a habit of putting his arm round a female waist but I’m fairly certain he’s extremely unlikely to do so with a carer – besides which, a carer would know how to deal with such a situation. He’s 87. I phone the CC to make an appointment.

In the meantime the mental health person came to do an assessment. When I arrived at the house to meet him the Goldfish looked really scruffy, unwashed and unshaven. When I mentioned it, the step-monster shrugged and said: “Well, he’s got all day.” Surely if he has a wash and shave in the morning it would help him feel a bit brighter?

As expected it was very clear his memory loss has worsened. Step-monster wittered on and on about him ‘doing fine’, despite what she was hearing. He managed to get the day of the week, the date, and the month and the season wrong and clearly had not the faintest idea who the Prime Minister is. How can she convince herself everything is fine? And that she is managing?

When the CC came to discuss dad’s personal care the step-monster started to insist they were ‘managing fine’. This time I wasn’t going to let her get away with it and told the CC that the Goldfish was often smelly, unwashed and unshaven – and the new shower was never used.

“Well, he can have a good wash at the sink,” said step-monster.

“He could if he knew what to do,” I replied, “but he no longer understands what he has to do to wash. He needs someone to help him and if you can’t do it then we need to have someone coming in.”

She finally agreed to have support workers come in but only three mornings a week – and not before 10am because she likes to have some time to herself in the mornings. At least for three days a week the Goldfish will smell a bit sweeter. A small victory!

My Dad’s A Goldfish: Learning Curve

After the diagnosis there was a compulsion to find out more – what exactly is this vascular dementia? What is going to happen? What changes can we expect? What should we be doing to stop it getting worse? Or, knowing it is most certainly going to get worse, what, if anything, could we do to slow its progress?

The Goldfish has a mixed type dementia: vascular dementia with a bit of Alzheimer’s thrown in. Vascular dementia is commonly caused by a stroke or a series of small strokes. Brain cells are deprived of oxygen and die. The Goldfish had not had a stroke – at least not a major one. However, it seems he could have been having a series of TIAs, little strokes – sometimes while he is asleep – which cause the damage. Some parts of the brain can be unaffected though it’s clear those parts affecting short-term memory definitely have been.

Vascular dementia progresses in a ‘stepped’ way. Symptoms may suddenly worsen due to a stroke and then remain the same for some time. Months, or even years later, another stroke will make the symptoms worse again. However, when vascular dementia has been caused by several smaller strokes, a more gradual progression of symptoms is likely to be experienced – which has been the case with the Goldfish, though the downward steps are now beginning to speed up.

I was heartened by the information people with vascular dementia tend to retain their personalities and emotional responsiveness more than those with Alzheimer’s. The down side of that, of course, is they are more self-aware of what’s happening, which can lead to depression. Occasionally, the Goldfish says something which indicates he understands he has what he has. One day, he said: “It’s not fair that there are people far older than I am who still have all their faculties.” I didn’t really know how to respond, not wanting to reinforce his thoughts but I was mentally agreeing with him – it is unfair, bloody unfair.

It was all new territory for me and for Wee-sis (and I suppose for the step-monster but as she steadfastly refused to engage with any of it I have no idea what her thoughts were). Everyone knows of someone coping with a family member with Alzheimer’s or other form of dementia but until it actually affects you personally it’s something you acknowledge is a terrible thing but you don’t rush home to start Googling it. Once it is your own family the need to know everything increases a hundred fold.

I remember when I was a child a neighbour’s mother had dementia. It wasn’t called that then – in fact I never heard the word Alzheimer until I was an adult. People said she was having her ‘second childhood.’ I found the phrase bewildering. Children weren’t aggressive monsters like this woman was. She would scream and chase us children if she saw us in her garden – we, of course, in the revolting way of children, provoked this by dancing by her kitchen window with potato sacks over our heads. How could we?

Now, we do our research, desperately hoping the Goldfish will not turn into a scary, aggressive person like our neighbour’s mother.

All our reading stresses the need for mental stimulation. The Goldfish is well past the stage of doing soduko or crosswords, though he did use to do one every day with the step-monster and maybe we should have noticed when he began to lose interest in it. The step-monster never mentioned it. Oh, hindsight, what a dreadful thing it is! With the realisation you missed something which was probably an important marker comes instant guilt.

Books and websites say reminiscences are important. The early memories, which are laid down first, are the ones which remain the longest. The brain is no longer able to lay down new memories so we should be working on accessing those earlier memories.

I found a series of books called ‘In Grandma’s Day’ which the Goldfish enjoys, especially the one on travel. It has pictures of the Queen Mary, which he remembers seeing being built on the Clyde. A picture of the AA (Automobile Association) man standing inside his little sentry-like box prompted the memory of such a man being on duty near where he lived. Each time he looked at the picture, a little bit more memory came back. “My mother used to take him tea in a flask,” he told me, pointing to the man in the book.

I went on a rummage to find old family photos. The Goldfish was a keen photographer in his day and when Wee-sis and I were children he took hundreds of photos. I unearthed some black and white photos taken during his time on the island of Islay, where I was born. I was thinking it would be good if he could remember the names of people and I wrote them on the back. It didn’t quite work like that. He looked at the first few pictures with some interest but when I asked him the names of the people he suddenly asked: “Where did you get these?”

“I found them in your study.”

“Well, you have no business poking about in there.”

“Oh, sorry, I just thought it would be good to have a look at them and remember the days when you enjoyed the ceilidhs – and maybe put some names to the faces. I was very small then and don’t remember who they are.”

He lapsed into a sulky silence until I gathered up the photos and put them away, wondering how I had misjudged things. Was it because he didn’t recognise anyone in the photos and felt embarrassed, not wanting to admit it? I didn’t think he was bothered about me rummaging around in the study and suspect his ‘annoyance’ was to cover up not knowing the people in the photos.

Strangely, the photos he does keep looking at are a dozen from his trip to Pakistan which are in a small cardboard-covered folder. It must be about 25 years ago since he came to visit me there. He flips through the album identifying the photos he is in but doesn’t remember the names of anyone else. He looked at it a lot for a while and then it vanished. I eventually found it in the cupboard of the telephone table in the hall. I think he put it there for safekeeping but who knows?

Baths, showers and outings

After some time the step-monster announced she thought it would be a good idea if the Goldfish went into the local residential home – “only one day a week so he can have lunch and a shower.” Wee-sis and I were horrified at this thin end of the wedge being shoved in. He’d hate residential care.

Since the dementia started he has become terribly confused – to the point of hallucinating – whenever he’s had to go into hospital, not knowing where he is and not understanding why he is there when we explain he is in hospital. We’ve had some of the most bizarre conversations when the Goldfish has been in hospital. Once, he was convinced the nurses’ station was a bakery and told Wee-sis to go and ask for a cake as they were just about to take one out of the oven. On another occasion he thought he had been taken to a hospital in the north of Scotland for blood tests and had been away overnight. “You’d think they would be able to do the tests here,” he complained, “instead of wasting all that time and petrol to go to Perth.”

In residential care we knew he would deteriorate fast. It was not an option Wee-sis and I were even going to consider. We could, though, understand step-monster’s difficulty in getting dad to clamber into the bath to use the over-the-bath shower. Apart from the dementia, he has serious mobility problems caused by an arthritic hip which gives him a lot of pain.

It was time to get social services involved, despite the step-monster not wanting anything to do with them. The decision was followed by much running around on my part talking to social services, getting referrals (nothing, I have learned can be done without a referral: it can be a doctor’s referral, a social worker’s referral, even a self-referral but the all-important referral must be made) An OT (occupational therapist) came along and suggested removing the bath and installing a walk-in shower. This will make life easier. Then someone else comes along to measure up, discuss colour schemes, the ordering and placement of handrails – and the costs involved. We are told it could be free if the Goldfish’s income and savings are below a certain amount but we know he isn’t eligible and decide not to go down the means-testing route. I could imagine him deciding to do without having the shower in rather than have someone asking personal questions about his pension and savings. There is, we are pleased to hear, a substantial discount available without the means test being necessary.

The CC (care co-ordinator) from social services came to confirm the work was going ahead and offered to provide a commode to be used while the lavatory is unplumbed during the day. We’ve been assured it will be plumbed in again and usable overnight. The step-monster didn’t think a commode is necessary. “We already have a facility in the bedroom,” she said.

“Oh, you already have a commode?” asked CC.

“Well, no,” this said with a wee self-deprecating smile, “but we manage.” What she means is she makes the Goldfish pee in a bucket if he needs to go in the night. I said it might be nicer for him to use a proper commode instead. CC agreed. “Oh, well, whatever you think. You’ll know best,” the step-monster said.

Commode duly arrived and the step-monster put it in the garage. Said he could use the ‘facility’ in the bedroom and if he needed a ‘number two’ she could take him up the road in her car to the supermarket!

As well as organizing the shower installation, I arranged to take the Goldfish out one day a week to give step-monster a break. We don’t actually see what difference it makes as she goes out and does her own thing every day anyway… Leaves the Goldfish parked in front of the telly. At least it will be something he will enjoy.

I hope Wee-sis can help out with some outings, too. We all – Wee-sis, DH and I – have to work for our living. Wee-sis is a support worker and does day and night shifts, DH runs his own business and I am a freelance journalist and writer. As I have no fixed hours (thought very definite fixed deadlines) I am the one who can most easily do this. In everyone else’s eyes at least.

On the first outing the Goldfish and I made together, the rain started as I pulled up to collect him. He was less than enthusiastic about going out in the rain and I understood why when I realized walking is so painful it takes him ages to go walk the twenty yards to where I’d parked. The rain didn’t stop until we came home.

Our first stop was at an art gallery/shop in a nearby town. There was a ‘country pursuits’ exhibition which I thought the Goldfish would enjoy. He sank onto the first seat he came to (which was in fact an exhibit and not intended for customers actually to sit on; the owner kindly turned a blind eye) and looked at the pictures he could see from where he sat. He liked the ones depicting hares.

Coffee and cake was next on the agenda which he devoured with relish before I drove along a coastal road, the two of us peering out through the rain at the glorious scenery. The Goldfish kept up a running commentary, naming trees, guessing their age and repeatedly saying: “I’ve driven along these roads a few times in my day.” When I say repeatedly, I mean roughly once every minute. We stopped for lunch at a café where he consumed – very slowly but with obvious pleasure – a huge bowl of soup plus a sandwich, coffee and an ice cream. There’s certainly nothing wrong with his appetite. Back in town I called in to see Wee-sis so the Goldfish could enjoy patting her dog. He always had dogs and misses having one around. Wee-sis also has cats, one of which really likes the Goldfish and made a beeline for his lap where he lay, purring and shedding masses of orange fur.

Wee-sis asked the Goldfish what he’d been doing, to which he replied: “Nothing. I’ve not been anywhere.” Six hours touring around, £50 on petrol, lunches and coffees and he doesn’t remember a thing about it!

My Dad’s a Goldfish

My Dad’s a Goldfish. He really is. Thirty seconds after eating dinner he has forgotten what he ate. Thirty seconds after coming home from an outing he has forgotten where he was – or even that he had been out. I can go into the kitchen to make us coffee and he’ll be surprised to see me when I return, even though I’ve been sitting beside him for the last hour. Okay, I know they’ve sort of de-bunked the myth about goldfish memory-span but dad’s loss of short-term memory certainly gives meaning to the expression ‘living in the moment’.

For anyone who has not guessed from the above description dad has dementia. This blog is a way to allow me to relieve my feelings about the situation – perhaps even try to find some humour in it – and stop boring my friends and family half to death by going on and on and on about it. I don’t mind if no one reads it but if others coping with a similar situation find it useful/helpful to know they are not alone then even better.

The Goldfish has vascular dementia with a bit of Alzheimer’s thrown in for good measure. For a while after the diagnosis, life seemed to go on much the same. His wife (the wicked step-monster, of whom more will be said later) appeared to be coping with his increasing forgetfulness and maintained everything was ‘fine’. Oh, the guilt when I think back to those early days and wish I had intervened sooner. She wasn’t coping, wasn’t even not coping but was in complete denial of there being anything wrong at all.

The Goldfish continued to visit me whenever he took the notion (maybe when he remembered I existed?). These social calls usually happened during my working day, often when I was on deadline with an article. I tried to pretend I wasn’t in but he would assume I hadn’t heard him calling and wheeze up the stairs to the top floor to my study. Downstairs I’d make us coffee. After asking fifty times if I had any holidays planned and was I having a busy day he would lapse into silence. My questions as to what he had been doing were answered with a: “Nothing much.”

Two or three times a week he drove to the bus stop, caught the bus to the next town where he would walk through the shopping centre, have a coffee, – the girls in the coffee shop would have his white, no sugar on his table almost before he sat down – buy a couple of things in the Pound shop and catch the bus back. I could have walked the route blindfolded so often did I hear him recount it. Sometimes, though, his car was not where he swore he left it, and we’d have to search the streets close to the bus stop. One day I was shopping when I received a call from the DH asking if I could think where else he might have parked his car as it was nowhere to be found. It was a bitterly cold day, the temperature never rising above freezing and the Goldfish had been wandering around for hours. “Maybe he was late for the bus and drove to the next bus stop along the route,” I suggested. They found his car, the windscreen completely covered in ice and Wee-sis watched in horror as he drove off, only able to see through a tiny peep hole he’d rubbed clear.

The car was his independence. We dreaded the day he would not be able to drive but, even more, we dreaded the day he had a serious accident. A couple of times he came home with a scrape or a dent with no memory of how they had happened. When his licence was due to be renewed the DVLA wrote to his GP who contacted us. He was concerned about dad’s fitness to drive but if we felt he was still okay he would agree to the renewal.

“Can you sit in the car with him and get him to drive around the town? See how his driving really is?” I asked the DH.

“Why don’t you sit with him?”

“I’m not getting in a car with my dad driving.”

The decision was made. It was awful. The Goldfish was furious, demanding to know who was stopping him from diving. How could they? We had to remove the car from the drive, insist the step-monster hide her car keys and explain to him over and over and over again the doctor felt it was time for him to stop driving. We assured him his wife was able and willing to drive him wherever he wanted to go. How wrong we were.