My Dad’s A Goldfish – war of nutrition

(Warning – long post)

The Goldfish has been taken into hospital – chest infection/urinary infection – possibly both. He is very weak, from a combination of the loss of weight and the infection, the former contributing to the latter.

He is going to miss his appointment with the dietician. The step-monster is pleased about that. When the appointment letter came she announced she didn’t think she would go this time. She has steadfastly ignored much of the dietician’s advice and the leaflets she was given are buried under other things on the kitchen dresser. She has at least been buying whole milk instead of semi-skimmed, buys butter – the cheapest it is possible to buy – instead of low fat spread. Everything she buys is the cheapest line at the supermarket. I could understand if money was an issue but it really isn’t.

I’ve had a long chat with the doctor and explained the situation with the weight loss. He says they will use the opportunity to check the goldfish thoroughly for anything, other than poor nutrition, which might be responsible for it. He undergoes X rays and provides umpteen samples of blood and urine and ECGs – everything is fine, apart from the chest and urinary tract infection, both of which are responding to treatment.

There’s a chart on the end of his bed on which they record what he eats and because they know about the dementia they check he is eating. So far he has eaten everything apart from jelly – well, he doesn’t like jelly and would never have ordered it so whoever filled in his menu didn’t check – or said: “Would you like jelly?” The Goldfish – never one to make a fuss – would have agreed. It has been agreed the hospital dietician will see him since he is missing his appointment at the health centre.

The Goldfish is very confused and can’t understand why he is in hospital. He maintains there is nothing wrong with him. He seems to have been ‘travelling’ all over the country. He told me today he had to go to Perth in an ambulance and couldn’t understand why they couldn’t do the tests where he was instead of making him travel all that way. He grumbled to me: “You’d think they’d have all the equipment here, wouldn’t you? Where is this anyway?”

“You are in Dumfries infirmary.”

“What am I doing here? There’s nothing wrong with me.”

The step-monster visited with her d-i-l who read his food chart and seemed very surprised the Goldfish was eating well – presumably because she’s been told he has no appetite.

The dietician weighed the Goldfish. He is the same weight as when he came into hospital over a week ago. For the first time in many, many weeks he has not lost any weight – on hospital food, at that! When the dietician understood the situation at home she was reluctant to allow the Goldfish to be discharged. Finally, after long discussions with us and social services (who now consider the Goldfish to be a vulnerable adult at risk) she okay-ed the discharge home – as long as Wee-sis and I agree to take over providing his nutritional needs.

It’s a big undertaking but it seems to be the only way. She nearly killed him by starving him and if we don’t step in the starvation diet will continue. We’re wondering if we could hire her out to people desperate to lose weight – go from a 16 to a size zero in three months with the easy-to-follow starvation diet. Move over Weightwatchers!

DH and I go to see her and it was even worse than I feared it would be. I saw the sweet old lady public persona morph into the wicked witch. Nasty! Bit like a fishwife rolling up her sleeves preparatory to having a go.

DH gave her a copy of a letter from the dietician and explained what she had said and was to happen – that Wee-sis and I between us would provide breakfast, lunch and evening meal. She refused point blank saying she was perfectly capable of looking after the Goldfish. DH tried again and again to explain the importance of the Goldfish getting a more nutritious diet and she said she did feed him properly. DH tries again to say that although the kind of food she is giving the Goldfish is fine the quantity is far too little. She replies, “I’ve been looking after him well for years – you are saying I can’t. Don’t you think I’ve been doing a good job?”

By this time the DH is clearly not sure where to go on this because the step-monster doesn’t seem to be taking in that this is not a suggestion for discussion – it’s what is going to happen. I jump in and point out that the Goldfish has been losing weight – she agree he has but says she doesn’t understand why when she’s feeding him properly. I point out that while the Goldfish was in hospital eating hospital food he stopped losing weight. In other words when his dietary needs were taken out of her control the weight loss stops. But, she just continues to repeat her mantra about looking after him perfectly well. “Don’t you think I look after your dad well?” she asks and I finally snap. I’m not proud

“No, I don’t. And I also believe it’s your fault he is in the state he is in now because you haven’t fed him properly for years. When he was taking part in a drug trial for cholesterol you refused to go to any of the cooking demonstrations, you refused to follow the low-fat diet sheets he was given. You gave him fried food every day and when the trial was over and it turned out he had high cholesterol you continued to fry everything. He ended up having to take drugs to try to bring down his cholesterol – drugs which contribute to memory loss. If you’d fed him properly we would not have to having this discussion.”

“Oh, it’s all coming out now, isn’t it?” she said. “Well, if you think you can do better why don’t you take him to live with you?”

“Because THIS is his home – the place which is the most familiar to him and where he feels most secure. And another thing – you can forget the idea of putting him in a home because he is not going into residential care.”

Finally, finally, she agrees to Wee-sis and I coming in to provide meals for the Goldfish. DH goes off to fetch the Goldfish from hospital.

The step-monster’s d-i-l has sent up a roast beef dinner. DH follows step-monster into the kitchen when she goes to heat it up and sees her remove most of the meat so a little piece the size of her palm remains, most of the potatoes so one little roast and two boiled are left. Despite everything we have said, everything the dietician has explained to her, she simply can’t understand how much the Goldfish needs to eat.

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My Dad’s a Goldfish – first wheelchair outings

Despite the Goldfish losing so much weight we continue with our regular outings to give the step-monster her respite days.

A friend lent me her late father’s wheelchair while we wait for the one social services say they will provide. I take the Goldfish down to Threave Castle just outside our town to see the Ospreys, which are nesting there.

The gates along the path are a bit of a nuisance but we eventually work out an effective method. I stop the chair, open the gate away from us, the Goldfish pushes it further open with his walking stick then as he removes his stick I rush through before the gate closes.

From time to time the Goldfish offers to get out to give me a rest! I assure him it’s no bother – though it is much harder work than I anticipated. The path is supposedly ‘accessible’ but I don’t think many wheelchair users make use of it.

Threave Castle

Threave Castle – pic by Wee-sis

As we round a bend and the castle comes into view, it’s worth the effort as the Goldfish is delighted, saying he’s never been so close to it before. I vaguely wonder if I could get him into the wee boat which ferries people across but dismiss the idea as daft. We move on to the Osprey viewing platform where volunteers have 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 can’t see anything but once the telescope has been adjusted I hear him exclaim and know he has seen the bird on its nest. He looks round at me, beaming with pleasure.

We return to the car park – it is harder work going back as there is more uphill work but we manage. Great workout for my arm muscles! A large banner advertising the Ospreys is hanging outside the visitor centre. The Goldfish reads it out aloud then says: “Ospreys, my, they would be something to see.”

For our second wheelchair outing I took the Goldfish out for lunch and then to Kippford, an attractive little village on the Solway coast popular with tourists and yachtsmen. This time we had his new social services wheelchair, which came very quickly. I have to say our local social services have been great, especially the CC – we struck lucky when she was on duty the day the referral for the Goldfish came through.

I parked the car, heaved the chair out of the boot, attached foot-rests. I then re-attached foot-rests correctly – have never learned left from right. I extricated the Goldfish from the car and into the chair then discovered the seatbelt was under the cushion. Tried again and this time was successful in strapping him into the chair.

I pushed the chair across the road to the pavement side but I couldn’t get the chair up the kerb onto the pavement. An elderly couple walking past came to my rescue. I thought the man, who looked older and more physically frail than the Goldfish, would have a heart attack. I thanked them profusely and set off.

It was a nightmare. The pavement was not flat but had a steep slope on one side so I was constantly fighting the chair’s inclination to veer towards the road. At least it was fairly warm and dry and the Goldfish could admire the boats in the harbour and comment on the fact they would ‘cost a few pounds’. A few thousand, more like. At the top of the village we had a much needed ice cream before returning to the car. This time, I stayed on the road as much as possible so I didn’t have the constant strain on my arms and back. I should soon be super fit, pushing the Goldfish in his chair.

 

 

My Dad’s A Goldfish – back to the weight loss problem

I’m starting this post with a bit of an explanation about these blog entries. The events I am describing now happened a wee while ago and are not describing the current situation with the Goldfish. I’ll get to that before long but I wanted to provide some of the background before we reach where we are now.

I have always kept a diary and last November I took part in NaNoWriMo (National Write a Novel in a Month) in which people try to write 50,000 of a novel in 30 days – 1,667 words a day. I didn’t want to write a novel but I thought it would be a good opportunity to write up my diary entries into a reasonably complete account. With NaNoWriMo there is no time to edit those words – the whole point is just to keep writing so what I ended up with was 50,000 words which really needed to be edited. This is what I am doing now. I hope to post more frequently until I have caught up with the place we are now at with the Goldfish.

The Goldfish as a young lad.

The Goldfish as a young lad.

 Back to the feeding problem, then: this is ongoing through the summer of 2012 and into winter.

 The step-monster continues to maintain the Goldfish is eating well. I know he eats well at day centre and when I take him out but the weight loss continues. We suspect she is not giving him enough to eat.

I am astounded to receive an appointment for the Goldfish to see the dietician within a couple of weeks of seeing the doctor. We need the step-monster to be there because the Goldfish doesn’t remember what he has had to eat two minutes – or less – after he has eaten it but I don’t want to give too much notice or she’ll be planning how to make it all sound like she’s feeding him properly. Finally tell her the night before the appointment.

 We all go, the Goldfish, DH, the step-monster and I so there’s a bit of scurrying about to find enough chairs. The dietician has notes from the doctor about the weight loss but asks us to explain our concerns. She asks the step-monster what he has to eat in an average day. The step-monster produces her notes – I KNEW she would prepare for this – and starts reading out lists of foodstuffs. It all sounds very healthy: cereal in the morning, toast, soup and roll at lunchtime, main meal at night with some meat, vegetables.

 The dietician is nodding away and says it all sounds fine. I’m mentally cursing her for not knowing the woman is lying through her teeth. Yes, soup and a roll for lunch but it’s half of a small tin and half a roll. Then the dietician throws a curve-ball and asks the step-monster about quantities. This knocks her off balance a bit as she hasn’t thought it through and she finally shrugs and says: “Just normal quantities.”

She is asked to keep a food diary for three days, recording everything the goldfish eats and drinks. The dietician gives us a booklet on what sort of foods to give and how to add calories. It’s really interesting with lots of tips such as making up a cup-a-soup with milk instead of water, adding butter and milk to mashed potatoes. She says to forget low-fat as it is more important to get the Goldfish’s weight up so he can have cream and puddings, full fat milk and butter.

The step-monster sends off her food diary, which I know is rubbish. Instead of putting in quantities in weight and fluid ounces she sticks to her belief she is giving him ‘normal quantities’ She’s got it into her head the Goldfish eats very well, but at the same time insists he doesn’t need much because when people get older they don’t need so much food. I know some older people do lose their appetite but it’s obvious the Goldfish still enjoys his food – though the dementia means he doesn’t feel the hunger pangs which tell us we need to eat. He would never think to go and make himself a sandwich. He eats when food is put in front of him – and when constantly told he doesn’t really need much, he accepts it.

Now we wait until the next appointment when the Goldfish will be weighed again.

 

 

MY DAD’S A GOLDFISH: DAY CENTRE

With taking the Goldfish out at least once a week, plus taking him to appointments with the doctor, with practice nurses, to have his hearing checked, not to mention dealing with the care agency who provided the personal care, I was struggling to keep on top of my writing work – both freelance journalism and preparing a poetry collection for publication. The step-monster never took him anywhere apart from the occasional trip to the supermarket.

The CC came up with various suggestions – there’s a lunch club, for instance, which the step-monster and the Goldfish could attend together. The step-monster didn’t like this idea, nor had she any interest in meeting with other carers in a similar situation. She was enthusiastic about the CC’s suggestion that the Goldfish could perhaps go once a week to the day centre. “Oh, yes,” she chirruped, “he’d enjoy going to meet people.”

CC said she would be happy to refer him for a place. She wasn’t sure how long the waiting list was and someone from the charity would come and do an assessment to see if the Goldfish was suitable. CC said transport wasn’t available – would the step-monster be able to take him there? This is to a church hall a five minute drive from their house. The step-monster’s face changed (I recognise it as her ‘I’m not very happy with this’ look) and she was quiet for a bit before, grudgingly, muttering, “Well, I suppose I could, if I have to.”

This is the woman who want to get the Goldfish out of the house so she can have some ‘me’ time, what she refers to as ‘respite’ and she’s being offered the opportunity to have time on her own nearly all day and she’s reluctant, almost to the point of refusal, about having to give up around fifteen to twenty minutes of time to take and collect the Goldfish. Words failed me. The CC and I look at each other. She looks a bit stunned.

“You could hire a taxi, I suppose,” she suggested, to which step-monster instantly agreed. I just as swiftly vetoed the idea.

“I don’t think you can expect dad to get in a taxi with a strange person to go somewhere he doesn’t know. I’ll take him and bring him back.”

I wanted to go with him to start with anyway to see if he really is happy there, if someone really does talk to him or if he’s left sitting staring into space. They say there will be someone to talk to him about things which interest him but as they don’t know the Goldfish and he doesn’t volunteer information, I’m not convinced. Besides, how many will have any understanding of artificial insemination, cattle breeding lines and Clydesdale Horse pedigrees?

The Goldfish in his younger days. He still retains his love of horses, especially Clydesdales.

The Goldfish in his younger days. He still retains his love of horses, especially Clydesdales.

CC phones next day to say she has made the referral. Someone from the dementia charity will be in touch. When I ask if she still thinks the step-monster’s behavior is simply denial, as she once suggested, she replies that she has never met anyone so resistant to engaging with her husband’s welfare.

Day centre was a great success. The Goldfish was quiet at first, though he happily accepted coffee and biscuits and later tucked into his lunch. He refused to play dominoes. I played, occasionally showing him my hand and asking for advice. After the third game, he reached for the dominoes when they’d been shuffled – and won the next two games. Next time I’ll only stay for part of the day.

My dad is a Goldfish: Various Conversations

The Goldfish is losing the social veneer which prevents us from making rude remarks to and/or about other people. He passes remarks – rather loudly – in public places.

In the supermarket he suddenly said in carrying tones: “Goodness, she’s a big woman.” In case I, or any of the dozen shoppers round about us, were in any doubt as to which big woman he was referring, he helpfully pointed to her. I – and she, thank goodness – pretended not to notice.

Every time he sees Wee-sis he comments on how much weight she is putting on. He accompanies his comments about her getting fat with a few friendly prods in her stomach. Finally, she said: “Yes, I know I’m putting on weight. You tell me every time you see me.”

The Goldfish was very contrite, said he hadn’t realised he commented on her weight so often. Five minutes later, a prod on her tummy and: “You’re putting it on a bit.”

I wish the same could be said for him but the weight loss is continuing at an alarming rate. The step-monster admitted she had to make new holes in his belt to tighten it. But she still maintains he is eating well. I know he eats very well when I take him out. Last time he had cheese and ham toasties, ginger beer, a huge slice of carrot cake and coffee – with an ice cream before we went home. I do wonder what she is giving him to eat at home. She’s always on about how older people don’t need so much to eat and whenever she is eating out with us she makes a big thing of having only a starter because it will be enough, or she has a main course and puts half of it in her napkin to take home. I suspect she has put the Goldfish on short rations.

I remember that occasion particularly well because I took the Goldfish home earlier than normal and the step-monster was there. Usually, she makes a point of going out before I bring the Goldfish home, so she can avoid him for a bit longer. It always puts me in a quandary because I hate to leave him on his own as I worry he might fall, especially when his arthritic hip is sore.

She wasn’t pleased to see us. “Oh, you’re back. Do you have to go somewhere? she asked. I pointed out I do have to work and this week have had three days interrupted with social services, medical appointments, and various other things to do on behalf of the Goldfish and was now running late to write articles whose deadlines were looming.

“Oh,” she said, with a little shrug. “’You’ll soon catch up.” Yeah, of course, I will – if I work to midnight every night.

One of those appointments was with the doctor about the Goldfish’s dramatic weight loss. He asked about other symptoms and said it is either a sign of the Goldfish having a tumour or it’s a nutritional problem. As there are no other indications of it being a tumour, he will make an appointment with the dietician. I laughed, pointing out how long the waiting list is. I’ve known people wait for two years to see the dietician. The Goldfish might not last that long.

When we came back step-monster asks if ‘doctor was pleased.’ I say no, he wasn’t pleased and try to explain the situation to her. She tells me, yet again he eats ‘very well’ and I tell her in that case it is likely to be a cancerous tumour. “Oh, well,” she says, “I’m sure it will all work out fine.”

What sodding planet does that woman live on?

An Award for Me and the Goldfish

I was going to blog about the Goldfish’s weight loss but when I opened my inbox today I discovered two bloggers had nominated me for a ‘Very Inspiring Blogger Award’. Considering I have only been blogging about the Goldfish for such a short time I am absolutely delighted. Many thanks to dementiapoetry.com and frangipanisingaporenicum.wordpress.com for nominating me.

Of course the downside is I now have to give seven facts about myself and nominate another 15 blogs. Help! As I said I only started writing this blog a short time ago and am only just finding my way around the blogo-o-sphere i don’t yet know so many other blogs. As I find other blogs which focus on what it is like to care for someone with dementia I realise how great it is to be able to share our experiences.

The seven facts:
I am a writer: fiction, non-fiction, journalism, poetry
I love travel and spent ten years in Pakistan and Afghanstan
I am an avid reader
I enjoy cooking for family and friends
I have a very supportive husband – thank goodness, or I’d never cope with the Goldfish
I enjoy walking – though like writing, travel and cooking for friends, it’s difficult to find time for it
At school, many years ago, I was high jump champion for the county.

Blogs I enjoy/recommend:
girl1nterrupted
dementiapoetry
alzheimerswife
frangipanisingaporenicum
girl1nterrupted.wordpress

Normal blog service will resume tomorrow with the next chapter on the Goldfish’s journey in dementia land. I’m taking an evening off to enjoy my award.

My Dad’s a Goldfish – shopping for new trouserss

I take the Goldfish shopping for new trousers as his fall down all the time because he is losing so much weight. I park, unload the wheelchair and transfer the Goldfish from car to chair. En route to the shopping centre he announces he needs to move his bowels.

The first public loo we come to is one of those weird metal can things. I’ve never used one, convinced the door will open while I’m on the loo or, when I’m finished I won’t be able to open the door. I’ve no idea how the Goldfish could use it. I push faster to get to the shopping centre loos.

Wheelchair sign

A sign I look for as never before

The toilet for disabled people is locked so I have to push him on to the gents. At the door, the Goldfish gets out of the chair and totters off inside. I move the chair out of the way and wait for him – and wait, and wait and wait. Men who have gone in long after the Goldfish have come out again.

A cleaning lady heads for the ladies’ loos and I ask her if she is going into the gents but she says she can’t. She asks what the problem is. I explain about the Goldfish having dementia and I’m worried he can’t find his way out again – that’s if he hasn’t had a stroke and is lying on the floor inside. “Oh, dear” she says. “I’m sorry to hear he has dementia. Is he in the early stages?”

“Well, he’s gone past the early stage but it’s not really severe yet,” I say, wondering what level of dementia he has to be at before she’ll agree to help. She offers to find a male security person and disappears.

She returns, shaking her head. “Typical, isn’t it? When you don’t need one they’re buzzing about but as soon as you do need one, they’ve all disappeared. Has he not come out yet?” I shake my head in sympathetic understanding. She trots off again.

I hear the door of the gents open and the Goldfish’s voice calling “Is anybody there?”

He’s struggling to hold up his trouser with one hand, open the door and manage his walking stick with the other and in danger of falling flat on his face. I push the chair as close to the door as I can and grab hold of him. He’s worried about his trousers. I’m worried about him falling but somehow manage to get the trousers pulled up and get him to sit in the chair.

By this time one man is trying to get out of the gents, while two others are waiting to go in and as I bend down to help the Goldfish put his feet on the footrests, the contents of my handbag shoot out all over the floor. The man trying to get out retreats inside and shuts the door: of the two trying to get in, one tries to help me, the other looks at the ceiling and pretends none of this is happening and he’s not really desperate to get to the loo.

As I scrabble about on the floor scooping up keys, pens, purse, notebook, mints, tissues, lipstick the Goldfish looks on then asks, “What is all that on the floor?” When I explain he shakes his head. “Why don’t you keep your bag zipped up?”

With no room to turn the chair I squeeze round to the handle side reverse past the now several-man-deep queue. The cleaning lady re-appears with a security man in tow and looks disappointed to find I have the Goldfish back safely in his chair.

I thank her profusely and set off towards the lift to M & S. The Goldfish says, “I need to move my bowels.” I tell him he has just been, whizz round the menswear department gathering up trousers and jackets and head for the fitting room. I have him half out of his trousers when he says, with a greater degree of urgency, he needs to move his bowels. I zip him back into his trousers, re-settle him in the chair, tell a salesperson we’ll be back and rush to take the lift down to the toilets.

I usher the Goldfish into the accessible loo and step outside. He hasn’t locked the door so I stand guard. I wait. I wait and I wait and I wait.

It’s a busy place with the ladies loo next door and the gents opposite. I’m not concerned after the first five minutes go past. It can take him a while. Ten minutes later and I start to check my watch more frequently. Several people approach the accessible loo – some looking pretty non-disabled to me but then you can’t tell and I shouldn’t be judgmental but I suspect because it is a nicer loo than the ladies which has only two cubicles so there is often a queue and it gets a bit smelly. I indicate the accessible loo is occupied and they look disapproving as they go to join the queue in the ladies.

I tap on the door and ask the Goldfish if everything is all right. “Yes, but it’s not coming out yet.”

“Do you need any help?” I ask, mentally sending up a prayer, please god say no. Prayer answered I go back to waiting. DH phones to say he has finished his work and is coming to meet me. Good, I need some support here.

A security man goes past. Nods at me. Opens the door of the gents, glances in, retreats and disappears back into the shop. Five minutes later he reappears and once again opens the door of the gents, pops his head inside and comes back out. I wonder if he is looking for someone in particular. Maybe, I ponder, shoplifters go in there to conceal their stolen goods or sell them on. Security guard gives me an odd look as he goes past. I check my watch – it’s been almost twenty minutes. Wish I’d brought my Kindle.

Security man comes back and this time, after opening the door of the gents, asks if I’m waiting for someone. Does he think I hang around outside public loos for fun? I look at his face and realise he is indeed thinking that, and worse, which explains the odd look he gave me. I hastily explain the Goldfish is in the loo, resisting the urge to fling open the door to prove it – and that he seems to be having some trouble evacuating his bowels. The security chap looks like he’s just received more information than he needed but visibly relaxes at the explanation of why I’m hanging around outside the loos. He becomes quite chatty.

DH arrives and is not happy when I tell him he must go into the loo and help the Goldfish wipe his bottom but he does as he’s told and emerges with an exhausted Goldfish. All that time, all his hard straining resulted in a paltry couple of little blobs about the size of rabbit poo. We decide he needs laxatives.

Back upstairs in the changing rooms we help the Goldfish try on trousers. It takes ages but we finally find two pairs of trousers which fit him. They are two sizes smaller than the ones he is wearing. We head for home, all of us exhausted. The Goldfish has forgotten everything by the time we reach home – the shopping trip, the toilet visits (sometimes his memory loss is a blessing) and his new clothes.

I make an appointment with the doctor to discuss the possible causes of the Goldfish’s weight loss.