Crunch Time

Yesterday shattered me. Today the pain killer I took last night – shouldn’t have, but mind was absent through exhaustion – wrecked me. The side-effects from it are well known. I felt I couldn’t cope with dealing with the things left over from yesterday. I had calls in the morning from the pharmacist and the pharmacy and realised I’d have to pick up the pills and take the sputum sample to Dad’s surgery and get my own prescription filled…

I put my coat on and couldn’t leave. I took it off again.

Then the Care Agency rang me and, out of the blue, suggested the pills are delivered to them and they will take the sputum sample to the surgery. Real, positive suggestions. I gave them my heartfelt thanks.

The other thing I’ve realised is that I simply can’t carry on sharing my life with Gill – T’s wife. When he rang tonight, I told him. He said this was what happened with his first wife, Mary. Not quite. Mary had a year or two of it. I’ve had it for 17 years. I had no idea, at the beginning, it would simply intensify, year on year. I realise it’s reached a point at which T is balancing our needs carefully, and has been hit by Gill’s sister’s death at the same time as my needs. I don’t deny he would have attended the funeral today but even he agreed (he said it without prompting) that spending three days on the funeral might have been excessive, in hindsight.

He might think this is an unfortunate blip. However, I had to spend part of my energy the last two days trying to compensate for feeling resentful that he wasn’t here. He spent three days because of Gill’s needs, rather than the funeral. I suspect, with her sister dead she’ll become more demanding. And I have reached this point where I can’t cope with that extra burden, of coping with T balancing demands.

I’m not angry. Just resigned. We’l see what happens when we discuss it tomorrow. When I agreed to an open relationship, I didn’t expect he would spend so much time mollifying a vampire.


Day in the Life of a Carer

While I washed my hair, HMRC rang back. Fortunately, they agreed to ring me fifteen minutes later. They have resolved the problem and offered GBP30 for my time and phone costs.

Rang my GP because the pain in my shoulder isn’t going away and now I’ve pulled a muscle in my side. Also,  dandruff is back so I asked for treatment for that.

Found the number to ring for Dad’s telecare (fall button) service and asked them to take my name off the responders list. And T’s. We agreed that Dad will pay a small sum to hire a responder team rather than summon the ambulance.

Went out 2ish to buy bread (T had let us run out – he only looks after four items and we regularly run out of those) and cheese. Went to bank to withdraw money from Dad’s account and picked up my prescriptions from surgery. Popped them into hospital pharmacy, next door, sat down – and John Lewis rang to say they’d be delivering fridge within 30 minutes.

Of course, the pharmacy took 15 minutes instead of the usual 10. My surgery found the missing prescription but it was too late for me to go back to the pharmacy. Stuffed it in my pocket and went to Dad’s to remove everything from the fridge. Saw note from care assistant that there was no hot water or heating, which was not true. Turned the heating up.

Dad feeling dizzy and breathless. Forgot AGAIN that bed is hydraulic and switch is on bed – he can raise it up to help breathing. He’s had the bed for 5 years and never once used the hydraulic. When he complains of difficulty standing up, I tell him the whole bed raises at the touch of the switch and he either looks at me blankly or else is distressed to keep forgetting.

His zimmer frame was next to his chair . It’s not even meant to be in the same room. Dad, unsurprisingly, has been using it. Had to tell him not to, unless he never wants to heal. All he says in response to such things is: “I must get better!” It means I have to keep asking him whether he understands what I’m saying. Half the time he doesn’t even bother to listen to me.


I rang his surgery. John Lewis turned up nearly an hour after they rang me, to deliver fridge while I was trying to talk to the surgery. Surgery said GP would ring me.

I checked Dad. He was OKish, so I went to remove packaging from fridge and rearrange shelves. When I returned to Dad, who was opening envelopes, I noticed my phone was flashing. “Had anyone called?” I asked.

“Oh yes,” Dad said, looking at his post.

“Why didn’t you call me?” I asked. He looked blank. Then he moaned about the delivery men still not having delivered the fridge. He was astonished when I told him they had.

The call was the surgery. The GP left a message that didn’t seem to tell me anything. I gave up. Sod it.

I went from Dad’s place to Ashfield to give them the money for shopping that I’d withdrawn from the bank. Also asked them to ensure Dad’s zimmer frame was not left in the same room, as we’d agreed. I pointed out that we wouldn’t want Dad to fall over and perhaps hurt himself. They agreed to tell the assistants.

Too late to go to any surgery with my prescription. I’ll have to do it tomorrow.


As soon as I got home, his telecare service rang me to arrange stuff about getting a response team. They warned me the small sum only covers 8 calls a month. Beyond that, we’d have to arrange a charge to cover extra call outs. Yeah, yeah. I had no fucks left to give, by then.

I scraped together the little tiny fragment of my remaining weed and had a smoke. As I sat down, looking forward to just having a blank evening, Dad’s GP rang and suggested she would be round to see him in ten minutes and would I be there? I put coat back on and walked round.

Dad was surprised to see me. I tried to explain a couple of times that GP was coming but he wasn’t getting it. No idea whether he doesn’t hear (despite hearing aid) or there’s a cognitive impairment. I just don’t have the energy to care any more. Just sat there. He fell asleep and was astonished when the GP woke him. she had asked me whether he was coughing but he hadn’t mentioned anything like that. He happily told the GP he’d been coughing for weeks, when she asked. Apparently, he’d had a chest infection in hospital. Not that anyone had bothered to mention it to me. No wonder I’d told the GP this was all new.

She was concerned about his slow pulse. I told her I’d noticed that the hospital had removed his iron tablets from his medication and I mentioned this to the surgery pharmacist. GP said she needed to find out more and get back to me tomorrow.

Outside the living room, she looked at me with concern and asked if I was OK? I said it had been a bad day and was drained. That was all.

Went home, sat down and T rang. I told him about my day. It was just about the first day when he could have been really helpful, rather than running around in Essex supporting Gill about her sister’s funeral. I didn’t say that but said I didn’t want to talk, thanks. I wanted to crawl into a hole. He did the “oh, what a shame I’m not there!” bit and I restrained from all the comments I could have made.

Fuck it.


T gets very irritated that I remember better than he does. He accuses me of always claiming I’m right. This accusation often comes on the heels of the latest episode of him being proved wrong.

At the beginning of the month he swore blind that he had categorically NEVER completed an online tax return. I let it go at the time, but it has now become important to check, following a conversation with a rather slack HMRC operative yesterday who claimed T had no Government Gateway account. So I asked T to check and he ploughed through his files (he’s complaining now he has too many files and keeps losing some – but when I discussed ways of preserving information he said this is the only one that works for him). He came up with last year’s tax return, which was the short form. But the year before was online. He has a tendency to accept the latest example of any experience as the one that has “always” occurred.

He’s commented a lot recently on his frustration with having to check everything multiple times because he can’t depend on his memory. Fearing Alzheimer’s, I did some research and found there is a drug, though it’s only available following a full assessment by a memory Assessment Centre. So I decided to be sneaky and lie (first time).

I mentioned, as casually as I could, that I’d found out from the Carer’s Forum that there’s a drug that slows memory loss.
“Do you think there’s a problem with my memory?” he demanded.
I was taken aback. “You’ve been saying there is. You’ve been complaining about forgetting things.”
“Do you think it’s a good idea for you to spend time on that forum?”
Clearly, he doesn’t want to have any discussion about his memory and will now view the Carer’s Forum with suspicion.

This is getting silly. I’m avoiding talking about more than we ever discuss. Walking on eggshells and all that.


Ended up spending an hour on the phone trying to sort out T’s password.  Had to terminate the first call when still hanging on after 31 minutes and rang back to make a complaint. At the end of that call T said he ought to go out and get bread for us. I had to point out it was 3.20 and the awaited mattress was due to be delivered between 3.35 and 4.35. Why couldn’t he figure that out himself?

In addition, I put my foot down and asked to see his previous records about tax returns as he’d assured me at the beginning of the year that he’d never, ever, filed a return online. I found his 2013 return (copy) and pointed out he had filed online before and I was only pointing it out because it was important. (First operative had tried to tell me there was no Government Gateway account).

This came up on FB later, from this time last year:
“OH is convinced something is wrong with the online self assessment process. First – when he keys in all the passcodes, he can’t get in. When I do it, I can. This, he concludes, has nothing to do with him, as he is not making any errors.
Second, he has now entered his figures on the tax return and ends up owing more than he earned for the year. Um… looks like I need to sort him out tomorrow “


I’m becoming convinced T has Alzheimers. Why? Well, over the last two years his memory has become so bad he himself is worried.

He’s beginning to find reasons not to do anything he’s not interested in. When I suggested he go to the local drop in computer centre to learn more and save calling me in once or twice a week to sort out simple problems, he said he would. Then he couldn’t because of X. Then he needed to sort out his tax return and couldn’t think of anything before that. Except he’s been concentrating on trying to find a new writing project to engage himself in. once he’s writing, he doesn’t do anything else.

He’s forgotten how to put the hoover together and I found him tugging and twisting at the hose to get it to release from the body of the machine. He’s asked me to drill him in how to put it together and take it apart, but I’d rather he left it. I don’t want to have to buy a new one.

Last year he lost his car keys for the first time in his life.

I’m worried that the car accident he had in December (his car was a write off) is down to loss of concentration. He’s complaining that he now has to concentrate all the time when he’s driving.

In the last two years he’s left the tap running three times because he’s easily distracted, especially if his phone rings. He’s put a post-it note over the sink to remind himself. He regulary fails to turn off lights or shut drawers, cupboard doors etc. He complains he’s become paranoid about forgetting and, when I stay with friends for a weekend, he says he checks everything in the house two or three times before he leaves it.

He constantly forgets to swipe his smart phone if he wants to open or close something. instead he jabs it, as though it were the old type of phone, then becomes irritated and turns it off.

The most upsetting is that communication has steadily become more difficult. If I don’t understand the point he’s making, or argue with it, he becomes irritated and accuses me of being difficult. I have gradually – over 2-3 years – found myself disagreeing with most of what he says. It’s become almost impossible to have an actual discussion, which is such a shame, as he’s a high functioning individual with a sharp mind.

Watching TV has become difficult because he constantly misses things and needs constant updates to understand the plot.

He wants to have a holiday (we haven’t had one for a couple of years) but I’m not sure I want one, as I foresee it will be a week of arguing.

I’ve searched the internet today and found there is a drug that helps memory. To access it he needs to be checked over by a memory Assessment, which means a GP’s referral. He’s unwilling to see his GP at the moment, as he’s undergoing tests for spinal compression. He seems to have the feeling he’s using up too much of NHS time, as it is.  He declined to see the GP for chronic athlete’s foot and prefers to buy stuff online to treat it. That’s only a small thing, but it demonstrates how difficult it might be to coax him to see the GP about his memory.

As if I didn’t have enough with Dad!



you dare to ask?

One of the ill effects of caring – at least for me – is the amount of PTSD it brings up. Not just from childhood but also from the awful ending of the relationship with’s one little thing – I asked a friend for a favour. Now I’m finding it difficult to look at Facebook to see what her replay is. A part of me is telling me I shouldn’t ask for favours. That it will make someone dislike me.

Now, where on earth does that come from? Is that my toddler mother speaking? My martinet gran? Or is that some early school experience, when the under-socialised, over-intelligent child was rebuffed one time too many?

It sounds like my mother, to me. I learned early to say “no” because using a soft answer merely made her ask again and again and again. So that goes in with my surprising subconscious “I love you”. said when alone and thinking of something I find embarrassing or uncomfortable. I know that’s my toddler mother. For her, a child was there to say that all the time. To reassure her. A doll that spoke if you tipped it over.

Say the script and don’t divert from it. And never, ever, ask for something.

Back Home Again

Things have changed, during the last 6 months.  My father had to go on to 4 carers a day. He admitted he hadn’t washed for over 2 years and he’d lied to me when he said he was washing his clothes. I bought him a washing machine (he paid) and had it plumbed in for him. The carers use that.

I was doing his shopping and his pills. We arranged a Power of Attorney, which gives added leverage if I’m dealing with the NHS or Social Services on his behalf.

Then I crashed. Eight years of intensifying care had worn me down. All the fights and broken promises. He got a hearing aid but I had to fight to get him to wear it regularly. He got new glasses but didn’t throw out the old ones. He labelled the cases carefully – then muddled them up. Now he doesn’t know which are new and which aren’t. Neither can he recall who dispensed them, so I can’t take them anywhere to check the prescription.

He won’t sell the mobility scooter because that’s his lifeline. He needs to imagine he’ll use it again. Well, so what? If he wants that, I’m not arguing.

Then he fell and broke his arm, 20 November. During December I nearly cracked up. Given that T crashed his car in December  and was stressed out trying to buy a replacement, and he was stressed because G was stressed (ex-wife and very dependent on him) due to her sister’s illness and death, our relationship nearly crumbled. I knew things had to change. I talked to Social Services.

After the new Year, we began the intensive process of sorting out his discharge. That took most of last week. The big changes are:

  • 2 care assistants, four times a day. This is because his arm isn’t healed for at least another month, and he mustn’t use his frame without having a care assistant on each side of him, as he shouldn’t put much weight on his right arm.
  • I’ve bowed out of any hands-on care, such as shopping or the pills. I’ll stick to organising care and interfacing with SS and the NHS. But I can’t do the personal services stuff, however light.
  • the central heating is now on, and will remain on.
  • Dad’s bed has been moved from the bedroom to the living room.

I’ve been round to the Care Agency to arrange about the shopping and meet the staff. I dislike phones, and found that was the easiest way to deal with the problem. At that stage, even such a light task seemed to take Herculean effort, so I had to find a way to minimise that.

Tomorrow I need to arrange for his pills to go into blister packs, so the care assistants can give them. Not that Dad’s incompetent – but he does forget. It also takes me out of the loop.

Now, I hope I can begin to sort out the effects of stress – piles, a ‘stress-head’ (dandruff) and all the little things I’ve put off, like a haircut. I’m sleeping badly due to stress and my shoulder’s playing up, which doesn’t help. I’m hoping the new mattress topper, due next week, will remedy that.

Oh, and Dad’s fridge has decided to pack up, so I have to arrange delivery of a new one on Wednesday. That will be difficult for me, as the delivery slot is 2 hours… and I can’t stand being in Dad’s house for more than fifteen minutes. At least warm is better than it was.


Broken Promises

UK eye test chartFor some time now, I’ve been trying to persuade my father to get a hearing test. He finally promised me he would, just before he went into hospital.  As soon as he went in, he began telling me how much he appreciated everything I did for him and how he would change his ways in the future and act on what I said, instead of brushing it off or ignoring me.  Having heard this all before, I told him that what was needed was action. That he needed to do things, not just say them. Oh yes, yes, he would! It really will be different!

He’s been in the community hospital now since Thursday night. For those who haven’t experienced this UK system, someone goes to a main hospital to get their critical condition sorted. Once that’s OK, they’re sent home, if they’re well enough, or else end up in a community hospital to have physio, medication resolved etc. Our community hospital is a great resource for everyone – I’ve attended physio there. They also have an opticians, a pharmacy and a few other resources.

As the first consideration about my father is whether or not he’s capable of walking, I asked the nurses on Saturday if he’d walked at all. They said he’d declined the offer that day  as his knees hurt. (He does have severely arthritic knees). On Sunday I asked him and he said he’d asked that day for physio but there wasn’t a physio on duty. He claimed he’d taken a few steps on Friday but went vague when I asked for details. He’ll duck and weave. “Oh, I can’t remember”. Or repeat “A few.”  That’s the pattern when he doesn’t want me to know something. so I told him he had 2 weeks in the hospital to walk. They might even do the social services assessment before then. If he’s not walking far enough, they’ll classify him as non-mobile or restricted mobility. That might mean he’ll end up spending most of the day sitting on a commode at home or, if home is unsuitable, they might suggest alternative accommodation. He was appalled.

This isn’t done to scare him. This is the only means I have of motivating him. Otherwise, he’ll give in to however he feels, like a child, and then beg and plead when the crunch comes. But, by then, it will be too late.

Noticing how bad his toenails are, I also suggested he ask for the chiropodist.  Note this, because it explains my behaviour later on.

So I pop in to see him today and note he’s on the “bicycling machine” which is designed to make him exercise his legs by paddling them on the machine. I ask if he’s walked. “A few steps”. I ask for details and get the same vague answers.

This is not a man with any form of dementia. When the catering assistant comes by, he asks for coffee in a special (non-tip) mug and could she kindly move a piece of furniture in the adjoining bathroom to beside him, and place the mug on there. No flies on my father.

We’re back to my having to repeat myself all the time, so I suggest a hearing test while he’s in here. “Oh, that can wait until I’m out of here,” he says. “One thing at a time.”

Then he complains of boredom. I say he has his puzzle book. No, that’s not enough. He’s bored. “What can I bring you?” I ask him.


“Is there anything at all? Would you like the TV?” (That’s on the wall.)

“Oh, I can’t stand that.”

“Would you like a book?”

“Oh, I can’t read. My eyes get blurry. When I’m out of here I must see the optician.”

“There’s an optician here.”

“I can’t do that. There’s too much going on. The nurses are always in and out of here.”

“So what about your toenails?”

“I told the nurse yesterday, when you’d gone, and he said he’d leave a note so someone can come and do them.”

“If you can do the toenails while you’re here, you can get the optician to look at your eyes and get a hearing test.”

“No, I don’t want to do that. I’ll wait.”

Now, I’ve thought about this long and hard this time, since hearing all those promises about heeding me. Very reluctantly, after hearing this twice before and being ignored, I’ve decided there’s only one way to do it – CBT. In other words, give negative and positive rewards for behaviour. So I got up.

“OK, if that’s what you want, I’ll see you tomorrow.”

The begging and pleading starts. “Oh no, darling – don’t do that! Please don’t!”

It’s hard, but I really can’t think of any other way to change his behaviour. After all, the message about walking seems to have worked. And, as long as I reward him by staying there, he’ll ignore my wishes. So I went.

We’ll see if it makes any difference at all.

The current state of play

OK, let’s recap:

I’m a very competent, out of condition newly retired woman of 62, who could do with losing weight and needs to sign up for the gym. I live with a guy in his 80s who’s an athlete and an excellent historian, but otherwise hopeless around the house.  Everything he touches breaks. His shirts develop ink stains, his suit pockets develop holes. He’s IT illiterate to the point that there’s a computer crisis every other day. If I send him for groceries, he’ll return with something absurd, like the time he brought home olive oil spread instead of toilet rolls. Dirt is invisible to him so, although he’s now confined to disposing of the rubbish and doing the washing up, the latter can be haphazard, at best.

The only family I have that I’m still in touch with is my 89 year-old father, who lives ten minutes’ walk from me and has made himself completely dependent upon me and my OH for company or to be rescued from all the bad decisions he makes.  I didn’t particularly care for my childhood as I didn’t want to raise two children in place of parents. I stayed out of the house as much as possible during my teens, and got out as soon as possible. Finding the system expects you to sort out your aging child-dad leaves me profoundly unimpressed.

That stage all began 6 years ago, almost to the month. He’d been getting increasingly ill but wouldn’t go and see the doctor. My pleas, as they say, fell on deaf ears. So I went off visiting friends for ten days and within a day or so he’d been carted off to hospital and I had Social Services on the phone to me. Welcome to a new world!

We went through it all again 4 years ago. And now again, this last week or so. yes, I could see he was getting increasingly frail. I didn’t know he wasn’t earing because he hides or lies about anything he thinks might force him back into hospital. Well, that didn’t work well – that’s exactly where he is. Mind you, it took three ambulance call-outs, several phone calls to his surgery and two home visits to get there.

In a nutshell, it went something like this:

Tuesday – I go round for the twice weekly coffee and find him on the floor. Dial 999. An hour later, the paramedics arrive and put him back in his chair.

Wednesday – he rings me to say he’s fallen over again. I dial 999. These ones arrive within five minutes and put him back in his chair. OH goes round and arrives in time for GP’s visit. She says Dad needs more potassium. OH buys him bananas.

Thursday – his daily care assistant reports back that she doesn’t think he’s left his chair all night. Instead of wheeling himself on his walker into the kitchen, he asked her to bring his breakfast to him. He also asked her to empty his pisspot beside the chair, though no one mentions that to me.  I go round, dig out a meal for him, discover he’s been chronically undercooking his meals for goodness-knows-how-long, and watch him eat most of it. Later, OH pops in to heat up some custard to tempt Dad to eat bananas with custard.

About an hour later, Dad rings OH to ask him to come round to turn out the light for him, as he can’t reach it. OH rings me to relay request, as he’s trampolining.  Dad rings me to beg and plead with me to go round to switch off the light, as though I’d refuse. I ask him why he doesn’t do it and he tells me he can’t get up. On way round, I catch the GP’s surgery just before it closes. GP tells me to ring 999. I ring 999 and they give me the third degree. They put me through to a paramedic who repeats the third degree, then suggests ibuprofen.  I point out father not eating, so ibuprofen not a good idea. Neither can he remain in the chair, as he can’t go to the loo. Paramedic tells me I have two choices: either summon an ambulance, which may take up to 4 hours to arrive (as it’s not life-threatening) and cart Dad to A&E, where he’ll have to wait until they have a moment. Or ring the surgery. I point out the surgery now closed. “Try the out of hours doctor” the paramedic suggests. “He can get your father placed on a ward if he feels it’s necessary.”

I ring the OOH doctor and am told that one will turn up sometime in the next six hours, and to be at the house, ready.

No, I shall not wait at the house. The only chairs are in the same room as my father and the TV, which he doesn’t watch. No radio and I find reading tiring. Stare at the walls time. For six hours. I tell Dad to ring me as soon as the doctor turns up. The doctor arrives only four hours later.  The doctor is very efficient and tests whether Dad can even stand. He can’t. He decides Dad cannot possibly stay in the chair and rings 999. He warns OH and me that the ambulance may take up to 4 hours to turn up. So anytime between midnight and four am. The doctor asks us to stay with Dad. There aren’t enough chairs. As it happens, I’m also at the end of my tether. OH, who reads a lot, volunteers to collect a book from home and stand guard duty. Ambulance turns up before he leaves.

I prepare a bag to go to the hospital with Dad. I remove all his cards and money and add in things he wants but doesn’t need, such as a nightgown. I ask about his only form of amusement – his puzzle book. No, he doesn’t want it. I ask him twice, but he doesn’t want it. I put in his shaver and a pen.

Friday – I visit Dad in hospital. Skin doctor says he has terrible rashes. I point out he’s too frail to wash himself and too embarrassed to let the care assistant wash him. Skin doctor prescribes lashings of ointment, four times a day. Concentrated banana is being fed into Dad’s arm. He wears a hospital nightgown. He begs me to go to the hospital shop and buy him a puzzle book as he’s desperate for something to do.

Sunday – I visit Dad in hospital. It’s a bank holiday weekend and very hot. Dad is cold. They have put him in a different ward. He asks me to get his puzzle book out of his locker. As I do so, I smell something. It’s his clothes, which the nurses have bundled into a plastic bag. I tell him I will take them home to wash, as they stink. He confesses he hasn’t been washing his clothes for weeks, and not eating for months. He tells me Everything Will Change once he’s back home. This time he will follow the doctor’s orders and exercise and he will do everything he’s told. He will listen to me. I am unimpressed. I’ve heard it all before. As soon as he is home, he’ll forget all this.  His pen has disappeared, He can’t do his puzzles without one. I borrow one from a nurse. She is not impressed. he tells me his medication has changed. I go to the nursing station to ask why the change in ward and medication? I am told Dad is now in a ‘loan’ bed i.e. he’s on a stroke unit that keeps four beds to loan out to general medical if they’re not required for stroke patients. she will look at the medication and come round to tell me. There is something going on with a patient in the bed opposite and she doesn’t get round to me while I am there.

Monday – I have my first panic attack. All I am doing is trying to sort out a dispute about something I bought on eBay that doesn’t work. I find I can’t face dealing with this. However, there is no one else who can manage it for me. I post on Facebook and gain much good advice from friends, who have been supportive this last few days.

Tuesday – I have the day off, as OH is visiting hospital.  I’m still catching up with sleep, which is disrupted due to knowing that this will go on for a while and that everyone will expect me to be responsible for everything to do with my father.  Friends I have arranged to visit in less than 2 weeks ask me if I still intend to visit them?  It’s not as though I spend my whole time visiting – it’s more that my father’s timing is brilliant. (sarcasm). I cross my fingers and say yes.

The monitor I returned as defective was delivered to the eBay trader this morning, but he has gone silent on me. The computer I still have to return is sitting upstairs, waiting for me to arrange a courier. I have sent two messages to the seller asking him to confirm his address. It is now too late for me to sort that out today and it will have to wait. It lurks in the bedroom, threatening to trigger another panic attack.  I am very, very unimpressed.