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!

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My brother agrees to help

I can now walk without using a stick, but I still feel as if my hips and lower back could go at any time. To add icing to the cake, a knee injury I had 20 years ago has started to ache and make me limp. Plus an old tendon strain in my ankle has begun to complain. My body really is speaking to me and telling me it’s all right to admit defeat. And I’m listening. I remain confident that, once I’ve found mum a permanent place (which could take some time!) I’ll regain my former fitness level. And – assuming I can bounce back in the end, I also feel that this collapse will prove to have had a positive effect in the long term: not only by giving me permission to hold up my hands in surrender, but by forcing my brother and my mother to accept the situation.

I’ve told mum she’ll have to move permanently into a care home. She says she understands, but in my experience, you can have umpteen seemingly sensible and rational conversations with her to the extent you think she’s understood the issue – only to have her flatly deny that you have ever spoken to her on the subject. ‘No! You never told me that!’ Her face grows grim and fixed. Her hands clench. ‘I’ve never been told about it! I would’ve remembered if I had!’ So it’s best to assume the transitional phase will take some time.

I told my brother he has to step up to the plate. When he retired, and immediately moved further away, he said he would come to stay here overnight. I thought at the time, pigs might fly. And indeed, no winged pigs have yet been sighted. I said to him, now you’re no longer working full-time, now you’ve moved house and celebrated your daughter’s wedding, it’s not enough for you to come and have lunch with us once every 6 weeks! You need to come and help me with mum, to stay for a couple of days so I can just walk away, go to London or wherever. He said, he’d think about it (!). Then I collapsed.

I think that made him realise I wasn’t making a fuss about nothing. He said that he and his partner would come for a night. I said, that’s no good. It has to be 2 nights so I can have one full day in London. Otherwise I’ll have to carry my overnight bag round with me all day before I get the evening train. It didn’t seem a lot to ask. And so it’s been agreed. Actually, most of mum’s personal stuff and toileting will be done by his partner. She worked in a day centre for old people so I guess she knows what to do. But the main thing is, I don’t have to rush around organizing stuff. I’ve had to write down mum’s routine so they know what she’s used to and buy their preferred breakfast cereal, but other than that, I can then hand over the responsibility for mum’s care and wellbeing to my brother. I am not, after all, an only child!

Anyway, they’re due to arrive tomorrow. I can’t wait to head off…..

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.

I am not in the mood for Xmas

A very dear friend of mine whom I’ve known since university, died early on Christmas Day. He’d been ill for a while and although I’d given up hope he would recover, I still hoped he’d be with us for a little while longer. But a few weeks ago it became clear this wasn’t going to be the case.

I was very frustrated that I couldn’t be part of his support network. I couldn’t stay with him or accompany him to any medical appointments. But my friend assured me he understood I had enough to do down here with mum. As his illness progressed, I tried to visit him once a month but always for a brief, rushed lunch before I had to get the train back here. And so, luckily, about a month ago, I decided to book mum into the care home to have a week in London and spend some quality time with my friend – as well as visiting my other pals. I was even deciding what book to buy him for a Christmas present. And then, he took a turn for the worse. I was even told I might not see him alive. In the event, I did. But there were no chats about books and theatre, no reminiscences about his much loved home in Mallorca. Instead I spent most of my visits holding his hand while he dozed. When it came time to return here, I said goodbye, quite certain I wouldn’t see him again. And indeed, he died a week later.

This is life. It’s a shock to lose a close friend but sad things happen to people all the time. However, I’m finding it very hard to cope with mum. Ever since it became clear that my friend wasn’t going to make it, I’ve been eaten alive with resentment. I can’t help it. I stare at her, as she sits munching chocolates and staring at the TV, oblivious to anyone else’s concerns except her own. While my dear friend, who was 25 years younger than she is, who was full of interest and enthusiasms, and full of generosity towards others, has reached the end of his life. And because of mum, I couldn’t go and help with his care.

I made my decision to ‘sacrifice’ my own time for mum. I felt it was the right thing to do. But now being here has impinged on something that touches me deeply.  I can’t help it. I’m sick with resentment and frustration.

And to cap it all it’s Xmas, which I usually quite enjoy but this year my heart just wasn’t in it. I had to go through the motions because, not only did I have to cope with mum, but my brother, his kids and the Great Granddaughter all came to visit on Boxing Day so I had to sort that out as well. And because I really don’t want to be here, and because I’m grief stricken and only want to curl up and watch soothing and undemanding TV, mum is driving me crazy. She’s becoming more confused, more forgetful, more demanding and I’m on edge and preoccupied and can hardly keep a civil tongue in my head as the saying goes. The fact that she keeps asking, over and over again ‘when is the funeral?’ ‘How old was he?’ ‘Does he have a brother?’ doesn’t help. Each times she asks, it’s like a knife has been stuck in my heart.

In spite of this, I wish you all a happy New Year. May it be full of health and good fortune. We’ll need it to deal with the debris left by 2016!

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Mum turns 96

from-phone-065Mum celebrated her 96th birthday. A big number everyone agreed. Even she was impressed. Although she did keep having to ask ‘How old am I?’ I’m used to her forgetting that sort of thing – however I was surprised she also kept asking ‘Is it my birthday today?’ Even though she’d spent a long time opening birthday cards, unwrapping gifts, and admiring a bunch of red roses bought, very kindly, by one of the carers. For tea we had a prawn cocktail, which she really likes, and chocolate fudge birthday cake. The next morning, the carer asked mum if she’d had a cake, and mum said no. I was a bit miffed. I said, well, should she make it to her next birthday I won’t bother to do anything special, if she’s not going to remember!

At the weekend, we had a visit from Great-Granddaughter. The rest of the family came too, but the little girl is the only one who counts. As she is now a toddler, I had to make the house baby-proof and then spend the next day reconstructing everything I’d dismantled. Not that I minded; she’s a sweet, engaging little thing. And mum really did enjoy her birthday party.

I wonder how many more she’ll have. Someone asked if she’d like to make it to a hundred and get a telegramme from the Queen? In the past, mum has said she didn’t want to live that long. But this particular morning she was perky, and thought perhaps she might. My heart sank. I said, if mum does live for another 4 years, she’ll be living in a care home! The person gave me a surprised look – but it’s true. I’ve spent two years now as a f/t carer and it hasn’t been easy. Now the tasks involved are becoming increasingly more onerous. I find myself thinking: I didn’t sign up for this! To imagine I could continue for double that length of time with mum’s increasing deterioration is – well – unimaginable! On the other hand, if I knew for sure this was going to be her final birthday, I’d carry on here with an open heart. If only I did know!

 

The wedding! Apparently I had fun at the party….

 

I have a proper break

I had a fabulous holiday in Portugal, followed by a fun weekend in London and then a couple of days here on my own getting the carpet cleaned and other chores I can’t do while mum is here. That was over 2 weeks ago. Since then I’ve been catching up, not just with the backlog of stuff that had accumulated over those three weeks – but a back log that’s been building up over several months – since before my niece’s wedding, when I was being ground down by stress.

Mum stays in a care home that’s about a 20 minute walk away. Before I went on holiday, I dropped mum off there then I walked back – but plodded might be a better description. I was so tired I could hardly put one foot in front of the other. I spent my first afternoon of freedom watching a Swedish crime drama on the i-player. I never watch day time TV, but I knew there was absolutely no point in trying to do anything else. However, two days later I flew off to Lisbon, still tired but in better spirits.

It wasn’t a relaxing holiday. We visited four different cities in 10 days and all on public transport – but it was stimulating: full of variety and interesting encounters. My travelling companion, a friend from California, had done most of the research and found us some marvellously quirky places to stay. And by the end of the trip, I felt more like my old self. I no longer had a permanent headache; I found my brain, when not being continually interrupted by mum, could still follow a train of thought.  This was all a tremendous relief!

I flew back home on my birthday. The plane was delayed because of early morning fog which led to a whole string of missed connections and general hassles as I attempted to get back here, grab some warmer clothes and head off to London. But the waiting and hanging around was mitigated by the fact that I had an excellent novel to read. (Sea of Poppies by Amitav Ghosh – the first of a trilogy, which is very exciting!). So the day seemed, in some strange way, symbolic of my life!

And I did, finally, arrive at my friends’ house. The poor things had prepared a birthday feast and they nobly waited for me, finally eating at 9pm! The weekend continued: friends, cake, whiskey and laughter. I did get a little down in the mouth when mum came home and the old routine started up once again. But I can still feel the benefits of this extended break. And somehow I must try to hang on to my renewed sense of self.

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!

My brother is no help.

At the moment it takes my brother 2 hours to drive here. He comes down for lunch, does a few odd jobs that I can’t manage – and then goes home again. Mum often complains that he could do more to help, but I’ve always defended him because he was still working full time. I always assumed he’d help me more when he stopped work.

To give him his due, some years ago, he did try to convince mum and dad to move to a retirement village that was closer to him and his children. My parents did not want to consider the idea. Now it seems, it’s just as well they did not.

I knew my brother wanted to move when he retired but I didn’t expect him to do it so soon. But before his last day at work, he’d sold his house and bought a new one – this time nearly 3 ½ hours drive away. When I said I thought he’d have put off moving so he could help me more with mum, he laughed. Now he’s not working, he says he’ll 070.jpgcome and stay overnight – so he can do more jobs. My private feeling is that pigs might fly.

To justify himself, he points out that our parents never did much to help their own parents. So why should he put himself out looking after them?  However, none of the old people coped on their own. Mum’s parents were much older and they died when we were still children. But my mother’s older sister lived with my Gran and looked after her. My dad’s father was still alive when my parents retired and moved down here. Mum and dad would occasionally go up to London to see him for the day. But granddad was looked after on a daily basis by my dad’s younger brother and his wife who lived round the corner.

So the truth is, some other poor sap did the hard work of looking after mum and dad’s parents. Now my brother is using our parents’ behaviour to justify his own lack of concern. And why shouldn’t he? Some other poor sap is looking after his mother, after all.

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On a positive note: Some plants in the garden have thrived after the intense weeding! This bush has never looked so magnificent!