Mum has a bacon sandwich and I have a narrow escape

Mum really enjoyed the visit from my brother and his partner. She enjoyed having different people to talk to.  But then, two fresh, temporary carers have to be better than one grumpy, monosyllabic daughter.

She also enjoyed a change of diet. She had bacon sandwiches – which she likes very much, but which she never gets from me because I don’t eat bacon and won’t cook it; she had sausage and mash – which she also likes. But although I will cook her sausages (in a different pan from my veggie ones!) I get bored mashing the potatoes. Mum complained so much about how my mash was so lumpy that I now refuse to do it; and she also had take-away fish and chips – which I do eat, but can’t provide as I don’t have a car to go and fetch them.

For my brother and his partner it was a novelty; after two nights, they could leave and go back to their own lives. And as brother admitted, they did not have to deal with any messy ‘events’. Well, good, I’ve already booked them in for a second visit.

Just being able to walk away from the house, knowing mum would be 100% looked after, made a huge difference. To be able to hand over the responsibility of mum’s care to my brother and head off to the station, felt like I’d laid down a burden. And even though my break lasted little more than 48 hours I felt much better for it, with more energy to carry on with what is an increasingly heavy task of sheer drudgery.

I spent my free time in London. I stayed with my South London pals, one of whom I’ve known since school.  It was so civilised not having to get up at the crack of dawn, get mum changed and then make a dash for the station, praying the train would be running. It was so relaxing to be plied with delicious food and sensible conversation the evening before. Then, the next morning, to eat a leisurely breakfast and get a bus over the river. We were meeting up with two other old school friends at the Tate Gallery. We planned to see the new retrospective exhibition of David Hockney. When I walked into the exhibition, I almost burst into tears. I felt as if I’d found my identity once more; that I was again a person I recognised, the sort of person who goes to art galleries. And I’ll say in brackets that the next morning, before I returned here, we went to see another exhibition, this time of Vanessa Bell, which was equally wonderful, although in a very different way.

But back to our rendezvous at the Tate. After lunch, we couldn’t decide what to do next. One of us wanted to check out a nearby boutique that sells individual, crafted jewellery; then someone else suggested we went to a cafe she’d discovered that was just round the corner. But the cafe had closed down. We dithered, trying to decide what to do next.

We discussed getting a bus over to the South Bank. If we’d done that, we’d have gone round Parliament Square and crossed Westminster Bridge sometime around 2.30pm. When we talked about it later, we couldn’t remember why we’d suddenly changed our minds. But out of the blue, we decided to return to the Tate and have coffee there. Just after 2.30pm, a mad man drove his car into a crowd of innocent bystanders on Westminster Bridge. He killed a policeman outside the Houses of Parliament and was then killed himself. If we’d got that bus, we might well have been caught up in the mayhem. As it was, the Gallery was just outside the locked-down, cordoned off area and we all managed to get home safely.

I don’t know whether I believe in Guardian Angels, but I certainly feel like I had a narrow escape!

By the way, I apologise for not posting sooner but I had some IT issues and I just didn’t have the mental energy to sort them out…until now!

I am overtaken by events

I accepted I was on the point of collapse. I booked mum into the care home. All I had to do was struggle on for another week. But before that could happen, one evening I stood up and found myself in excruciating pain whenever I tried to put my weight on my right side. Which meant I couldn’t walk. I found an old walking stick that had belonged to my granddad, and managed to complete my tasks, getting mum into bed and such like.

I felt ok as long as I was sitting still, but moving about was agony. Trying to get out of bed was agony. The local surgery is quite close, less than 10 minutes walk away. I had to phone for a cab to get myself round there. The Doc assured me the problem was purely mechanical. I needed to rest. But of course, I couldn’t rest so he gave me some strong pain killers which allowed me to carry on for the next few days. Once mum went off to the care home I collapsed onto the settee and hardly left it for over a week.

At first, reading for hours on end felt like pure self indulgence. Then it began to feel weird: to sit on a couch reading for days on end is something you only do if you are very ill or, perhaps, completely exhausted. But I needed to do some things – like buy food, send cards for birthdays and wedding anniversaries which simply couldn’t be left. By now I’d found a proper walking stick that I’d used when I had a previous injury, so I got a cab into the centre of town and hobbled about. For once, I really appreciated that I live in a very small place! Then a cab home and back to the settee. I managed to extend mum’s stay in the care home for a few extra days. And I’ve been lucky to find a very good local osteopath.

She explained my back muscles had gone into spasm. She’s suggested certain ergonomic strategies I can use when undertaking tasks which I have to do in my role as a carer – but which are particularly hurting my back. She also pointed out that there is age related ‘wear and tear’ which has exacerbated a certain weakness in my lower spine.

Mum is home now and I’m being as careful as possible with my movements. In the short term, I’m improving.  I can walk as far as the bus stop and get a bus into town and I hope to get back to normal eventually. But in the long term, I think this is a wake up call. It’s time to look for a permanent home for mum. No rush, we’ll spend the next few months visiting different places, testing the waters, but I can’t continue like this. I feel like I’m being hammered into the ground. And I’ve told my brother he needs to do more to help me with mum – more about that in my next post!

Mum loses a tooth

Mum still has most of her teeth – which is pretty good for someone of 96. (I hope my teeth last as long!) But for the last few months, she’s been complaining of a loose tooth in the front – and worrying she’d lose that tooth and have a big gap in her smile.

The other evening she called me: I’ve found something in my mouth! She extended her palm. Look, it’s all brown. Her tooth had finally fallen out, painlessly and without any fuss. However, it wasn’t the most attractive looking thing. We both agreed it wasn’t worth putting under her pillow. The tooth fairy would not want it! And although mum does now have a gap, it doesn’t look that bad.

As for the gap left in my life by the death of my old friend, well, that’s still very painful. Thanks to all of you who sent me messages, either through the blog or by other means. I’ve been feeling very downcast, incapable of action but the last few days I’ve begun to feel a renewed sense of hope. This could be because of the time of year – recently we’ve seen both the Chinese New Year and the early spring festival celebrated here since ancient times.

Travelling to the funeral was dreadful but it turned out to be a half-full rather than a half-empty experience. It was a relief  to be with other people, to speak about Brian’s life, to share memories and also to receive some TLC and support from my friends – rather than having to exhaust myself looking after mum and then to sit alone and sad. Last week, I went round to his flat to collect a couple of treasures that had been set aside for me. The brothers had already started to pack up his things. Needs must, I know. Nevertheless, it was very upsetting to see.

I knew so many stories attached to the things in the flat – more than the family did. I was heartbroken to see everything being handled as if it were just stuff that needed to be got rid of. But, at the end of the day, it is only stuff. I still have my memories of a dear friend. And it was closure of a sort. I can no longer fool myself that he’s really sitting on his balcony in Palma, gazing out over the Mediterranean that he loved so much.

That’s how it is. But it’s made me start to think of my own mortality. I know I’m depressed at the moment but I’m beginning to wonder just how much longer I can spend looking after mum. I really don’t want to just bundle her off to a Home but I’ve decided that, in spite of the cost, I’m going to place mum in the care home for a week to give me a chance to recover, to recharge my batteries and try and work through the back log of chores I can’t accomplish at the moment because I am so tired. And then, maybe, I’ll be able to think straight and make some decisions.

We survive Granddaughter’s wedding

Just as Cinderella went to the ball, my mother went to her granddaughter’s wedding. And in spite of it being a logistical nightmare, everything went smoothly. The hire car driver was a nice chap who dealt with mum well. He did the journey in just over 2 hours – which was really quick and just at mum’s limit. At the Care Home Mum had a bit of a wobbly ‘Are you leaving me here all on my own?’ but my niece saved the day by arriving with Great Grand Daughter – which improved mum’s mood no end.

My hotel was about 6 miles away. To get there, I got a cab through the countryside, along dark lanes. I felt a little nervous but the driver was ok. And the hotel was good. It’s a converted manor house on the edge of a village. I had a single room but it was nice and big, obviously meant for people travelling alone on business. Mind you, it wasn’t cheap! And the bus back to town stopped right outside. So the next day I caught a bus into the central bus station, and from there I got another bus out to the Home.

Mum seemed fine, so I got the bus back and found a groovy coffee bar that did really nice coffee and panini. I began to relax. Eventually I returned to the hotel, which turned out to be in a pleasant historical village. After dinner I met some people I knew in the lounge. My brother’s first wife – and the mother of his children -died tragically young, but her family have maintained close contact. I knew them from all those years ago and it was unexpectedly pleasant to see them again – which was good, because apart from them I didn’t really know any other wedding guests!

The great day dawned. The staff at the Home seemed to enjoy the challenge of getting mum to the wedding. They arranged for her to have her hair done, made sure she got dressed in her wedding outfit without spilling porridge down the front – and were happy to welcome her back late in the evening. But I couldn’t have managed without my nephew and his wife who came up absolute trumps. They’d borrowed a folding wheelchair and nephew pushed mum around for most of the day. The church was on the top of a hill, as these charming old buildings often are. Nephew pushed her up the slope through the churchyard and then helped get her back down through the crowd of guests. Back at the hotel, we had the reception. Mum was mentioned in the speeches. Everyone clapped and cheered the fact she’d made it. She enjoyed seeing people; she even enjoyed the party in the evening. I thought she’d find the music too noisy but no, she really didn’t want to leave. In the end, I booked a cab for 10pm, which was quite late enough for old ladies of 95! Besides, until I’d taken her back to the care home – another scary drive through the dark countryside but again I was lucky and the driver was fine – I couldn’t really relax. Then I did have a couple of drinks and a dance. I even had a cigarette as we all sat around chatting until after midnight.

Sunday morning brother, nephew and nephew’s wife took me and mum out for a woodland walk, which she really enjoyed. And then…..we left her to rest. Brother dropped me off in Glastonbury on his way home. I had a terrible night. When I woke up the next day, I thought I had the flu. I realised I was detoxing from all the stress that I’d been living with for months: should mum go? could she manage? Because she wanted to go so much, I’d tried to make it possible but, if anything had gone wrong, the responsibility would have been all mine. But I felt blessed, as they say, that I could detox and de-stress in the wonderful Chalice Well gardens and guest house in magical, mystical Glastonbury.

On Tuesday I sadly got the bus back and picked up mum. The hire car driver arrived and brought us home without any problems. However, I’d not been prepared for just how long it would take mum to recover from the trip. For over a week now she’s been incredibly difficult, fractious and ultra confused – the one good thing is that she’s been going to bed early! – and it’s really been doing my head in. I still have an awful lot of things to sort out, both for myself as well as for mum, as she’s about to go into respite care for two weeks and I am going on holiday to Portugal. (I can’t wait!)

But I’m pleased mum made the wedding – and so is she! She even said thank you!!

My niece is getting married

My niece, that is to say my mother’s granddaughter, is getting married in a couple of weeks. The wedding was announced earlier this year and since then it has been a constant background of white noise in my life. Mum wants to go to the wedding, I mean she really wants to go to the wedding but she’s not sure if she should go. ‘It will be too much trouble for everyone.’ But you want to go? ‘Yes, I want to go.’ So, we will try to work something out. And then, the next day: ‘I don’t think I’ll go to the wedding.’ But I thought you wanted to go? ‘I do! But perhaps it will be too much trouble for everyone.’ On and on, in a refrain which has been repeated endlessly – and when I say endlessly, I do mean, endlessly – for months.

One of the main issues is that mum will have to stay alone in a residential care home. She can’t possibly stay in the hotel with everyone else as she is too disabled, incontinent etc. But it took a long, long time and many conversations before I was absolutely certain that mum had fully grasped this. She often complains that she hasn’t understand something – even though we’ve had several seemingly sensible discussions about the matter in question – so I couldn’t risk her having a tantrum about staying in a care home when it was too late to do anything about it. And so, slowly, patiently, I have repeated and repeated: you will have to stay ALONE in a residential home. Do you understand?

The next step was to find a suitable place. My brother and my niece live in the area so I thought it made sense for them to look for one. I had the impression my brother didn’t really want to be bothered. ‘She’ll never make the journey’ (It’s three hours in a hire car). And ‘It’ll be a logistical nightmare.’ That’s so true. However, she does really want to go and she thinks she’ll be ok to make the trip so, after a lot of encouragement on my part, my brother actually did find a place that he thinks will be ok and which is close to where my niece lives. And it seems mum has accepted she’ll be staying there. My nephew, meanwhile, has elected to organize a wheelchair for mum to use during the wedding day.

So, this is the plan. Mum and I will travel on the Thursday. I’ll leave her at the Home and get a cab to the hotel. Mum will spend Friday resting although I will check on her (apparently there are buses I can catch) after which I will spend the day mooching around a town which does not appear to have a museum, art gallery or historical centre. (Its tourist webpage lists a shopping mall as one of the attractions!) On Saturday, my nephew and his wife will pick me and my brother’s partner up from the hotel, then we will pick up mum and go on to the church. At some point on Saturday night, someone (probably me) will take mum back to the Home in a taxi. On Sunday the rest of the family can visit mum, but I’m heading for Glastonbury which is only a few miles away from the hotel. I’ll spend two nights there on a sort of recuperative retreat while mum rests. On Tuesday morning I’ll get the bus back to the town, which should take about an hour, and get mum ready for the arrival of the hire car. And then we’ll come back here, hopefully without any drama.

I don’t mind helping mum get to the wedding, and working out how to cope with her disabling arthritis but I hadn’t prepared for the stress that’s caused by her dementia and loss of short term memory. Even a couple of days ago, she started the litany again. ‘I don’t think I’ll go to the wedding, It’ll be so much trouble for everyone.’ I nearly screamed. I told her it’s all been arranged and it’s too late to change her mind!

This wedding should have been a pleasant if slightly dull family occasion. It should have been a long weekend that just involved booking a hotel room, booking a train ticket, and buying a nice outfit. But now, it’s become something I can’t think about without feeling I’m getting a migraine, something that needs to be endured. And in mum’s mind, it’s assumed huge proportions – like the coronation or something equally momentous. But then perhaps, it’s the last major social event she expects to attend.

I’ll be oh so glad when the whole thing is over!

I have existential nausea

It’s three weeks since I got back from my respite break – and for most of that time I’ve been trying to write a blog post but haven’t been able to complete one. I’ve been sunk into a slough of despond, I only want to sit around and read the paper. Thank god I had planned a few meetings with friends and they helped to lift me out of the depression.

I had a very nice time away: too nice, actually. I paid a visit to the village where I lived when I was a student; then drove up to Ely in Cambridgeshire with some old friends from Sydney. I’d never been there and it is quite lovely, very historic. After that I spent a few days with friends in London. Finally, I had a couple of days back here on my own, mainly clearing out mum’s bedroom – a task I can’t complete while she’s here.

The weekend I spent by myself made me realise just how much time and energy it takes to look after mum. I could get up when I wanted, I didn’t have to fit around mum’s timetable and the carer’s schedule. I could go to bed when I like, I didn’t have to wait until I could get mum settled.

And in between my chores, I could actually relax – read or watch a DVD. When she’s here, I can’t relax. I might think I’ve got a chance to get on with some project of my own – but then she calls me: she’s having a disaster, she’s spilt tea down herself and needs to be changed; she’s wet her trousers and needs to be changed; she’s constipated, stuck on the loo and needs to be talked to…. Then there’s the continual barrage of repetitive questions, which she just shouts out, no matter if I’m far away, in the middle of cooking, in the garden – or indeed in the loo! And there’s the sudden taking offence at some innocent remark I’ve made. All of this drains my energy.

Also, while I was alone, I could listen to the radio. This made me feel I was in touch with the world, gaining information and learning something new while I worked away. I can’t listen to the radio when she’s here because it annoys her – ‘too much talking’ – (although I have to spend hours trying to block out the noise of the TV which she always has on very loudly.)

Anyway, when she got home, I couldn’t get back into the swing of things. I resented the situation and felt like a drudge, an unpaid skivvy who is working my arse off while she just has everything to her advantage and there’s nothing to mine. I saw clearly how limiting this life is for me and how precious my time is, as I’m not so young anymore either. How many healthy years do I have left myself? I seriously considered the alternatives. Could I put mum permanently into the care home? Eventually the answer came back:  Not Yet.

I don’t know how much longer I will be able to stand it. I said originally I could do it for 2 years, or 3 at the most, so in October I will reassess the situation. And who knows how things will be by then.

In the words of Samuel Beckett: I can’t go on, I’ll go on. For now.

 

Mum loses control

Mum’s always been a control freak. She hasn’t been able to walk properly for many years and when my dad was alive she would sit in her chair and order him around. My mental imagine of her was like a spider, sitting in the centre of her web, controlling everything through the force of her will.

When I came to live here, I was determined not to be swamped and bullied – which did mean I had to use a lot of energy keeping up my boundaries. But recently, mum’s undergone a change; such a strange and uncharacteristic change that it’s taken me a while to fully grasp what’s going on. She’s started asking me “what do you want me to do?” And this for the simplest of tasks. Even, “Do you want me to flush the loo?” Answer: “Yes, please!”

She’s forgetting how to do things that she could do even a few weeks ago. Initially I had to remember to remind her (which was a bit of a headache because I wouldn’t always remember myself). But now I’ve integrated those tasks into my daily routine. It does add to my jobs but in some ways it easier because I don’t need to worry that I’ll hurt her feelings by ordering her around or make her feel less empowered by telling her what to do.

People tell me old people become more ‘biddable’. I have to say my dad never did. He continued to be a wheeler-dealer until the very end: Telling me there was a chap who worked in the hospital who was going to help him ‘get out’. Wink, wink. He was caught several times trying to make a break for it. I know he made it difficult for the staff, but he was always a rufty-tufty working man and I was proud that he clung onto a sense of autonomy, even though he had dementia.

But ‘biddable’ is exactly the word that springs to mind when describing this change in mum. Of course she can still have her moments, flaring up over some innocuous remark that I’ve made or getting upset because her memory loss means she’s misunderstood a situation. But the rest of the time, it’s quite relaxing. I just tell her, do this and don’t do that. It’s an interesting change in dynamics. To approach the centre of the spider’s web and find this shrivelled up old lady. The flipside, of course, is that she’s becoming completely dependent on me!

Year of the Monkey!

Mum was born in the Chinese Year of the Monkey, which makes her a very venerable Monkey indeed. Checking out her horoscope for the coming year I saw there will be quite a few obstacles in her path. The trick, apparently, will be to deal with these obstacles with patience and optimism. What one must not do is attack them with impatient negativity.

Unfortunately, even at her advanced age, mum has never really learnt how to approach issues with patience and optimism! She’s a half-empty rather than a half-full sort of person. And to switch zoological metaphors, I’m afraid a leopard can’t change its spots – which points to a rather trying year ahead for me if mum gets frustrated and cross.

On a more positive note, the Year of the Monkey is going to be a good year for me – as long as I take advantage of the opportunities that will arrive. Ok, I look forward to doing that. But – I must look after my health. The best way to rest, says the horoscope, is to maintain a good work/life balance. This could be a bit tricky. As any carer knows this is not like a normal job. It can be 24/7, there are no days off, no going home and leaving your work behind. Mum needs a lot more care than she did a year ago, both physically (incontinence etc) and mentally. So I must make sure my boundaries are firmly set, and I have time for myself.

In preparation for this, we’re about to have a respite break. Mum will go to the normal care home and I, fingers crossed, am going to visit the Pyramids and spend a week cruising on the Nile. This is my reward for the hard work of the last 18 months – and will hopefully set me up for the coming year!!

Abundance and Good Health to everyone.

We discuss euthanasia

Every morning when I take mum her cup of tea I move her pillows so she can sit up. I always ask ‘do you want to sit up?’ This morning she said, ‘no, I want to die.’

We discussed the potential ramifications of this. ‘I could just close the door and leave you lying here, but after a while you’d get bored, you’d get hungry, you’d need clean pads. I think in the end you’d get up and carry on as normal.’ She agreed just staying in bed till she died was not a good option.

Then I remembered the murder mystery we’d seen the evening before. The victim had been a chap in bad health; everyone had assumed his death was of natural causes – until they discovered he’d been smothered with a pillow! I made smothering movements with my hands ‘I could get a pillow like on TV last night! No one would question it; everyone would think it was natural causes.’

Mum nodded. I swear she looked a little hopeful. ‘No one would query it,’ she agreed.

‘But,’ I continued, ‘in the end the TV murderer was brought to justice. What if they did discover I had done away with you? Then I’d be sent to prison. That would be horrid. Sorry mum, I don’t think it’s worth the risk.’

So mum hauled herself up against the pillows, drank her cup of tea and we heard no more about it.

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BTW: I have my New Fence!! And I also have my New Laptop. Now just have to get used to Windows 10.

Mum turns 95

This week was Mum’s 95 birthday. Two days before, she met her great-granddaughter for the first time. This has lifted her spirits no end.

She’s been saying recently that she just wants to see The Baby and then she wants to ‘go’. Indeed, one morning she was so blue, she said she didn’t even care about  seeing baby! She asked me several times if dad died at Xmas. He died just after New Year, but this is the first time she’s brought the subject up in the five years since his death. She wondered if she would die at the same time of year as he had?

My grandmother had a stroke on the anniversary of my grandfather’s death and died shortly afterwards. So I began to be a bit concerned. But since mum’s seen The Baby, there’s been no more of such talk.

The birthday celebrations went on for several days, starting with a visit from my cousins bearing gifts from their side of the family. Since then, there’s been a steady stream of visitors: my brother, his kids and their partners – and The Baby of course; neighbours etc. At the last count, mum had received 19 birthday cards. She even got greetings via Face Book. All this has improved her mood immensely.

Mum has always been a gregarious person who enjoys chatting and laughing. I can’t really provide that sort of companionship. I could do, if there were two of me: one to do all the work and one to sit and chat and watch tv. The carers, who are here for an hour, the cleaners, the hair dresser, all cheer her up briefly, but mainly, she misses my father.

She told me, ‘I just want to see my Frank. Do you think he will find me when I die?’ I don’t know the answer to that one. I imagined the afterlife like a very crowded wartime railway station with refugees pouring off packed trains. I said ‘Well, thousands and thousands of people die every day. It might not be so easy for him to find you.’ She smiled and shook her head. ‘You don’t know my Frank. If there’s a way, he’ll find it.’

Well, of course, I hope she’s right. But for now, The Baby seems to have provided some sort of compensation for being forced to stay in this boring world. She has the child’s photo by her chair and speaks to it a lot. And she does seem to be much happier. I guess she really was, quite simply, depressed.

 

mum&alana