I walk like an Egyptian

I had a marvellous holiday in Egypt. So many people warned me not to go, said it would be dangerous, but I never felt afraid or threatened at any time. I felt for the local people who are struggling financially because tourism’s been so severely affected – But because there are so few tourists, the temples and sites weren’t swamped with huge gangs of people and there were hardly any other ships to spoil our peaceful passage down the Nile. Not only were there few cruise ships, the one I was on was practically empty. On the way down to Aswan there were about 20 passengers – half Egyptian, half British. On the way back there was only the nine – yes, nine – people who were on my tour. I was so lucky they didn’t cancel it.

The Pyramids, the Sphinx, the Egyptian Museum in Cairo. the Valley of the Kings, the temple of Isis at Philae, the Aswan Dam, Luxor, Karnak, Abu Simbil, the experience of the Nile itself, watching life on the river banks that can’t have changed much for centuries: it was all more fantastic then I had imagined it would be. But I’d also imagined I’d spend my evenings alone in my cabin reading and writing in my journal – but I was wrong!

All kinds of activities were arranged for us: an Egyptian night, when we all got dressed up in Ghelabayas and looked quite unlike Egyptians; a Nubian night – which was a lot of laughs; a visit from a belly dancer. Because there was so few of us, I couldn’t take my usual back seat but had to be a good sport and participate in party games, or attempt to do local dances (!). In short, I was forced to have fun.  Before the trip, I had wondered who I would sit with during meals. I’d thought ‘there’s always someone to pal up with or who will invite me to join them’ – but as we were so few, we all sat together round one large table. I felt integrated into one happy group. Dropped my carer’s persona all together.

At home I keep my comments simple, if not monosyllabic because I often have to repeat them over and over again. I’d forgotten I can be cheerful, chatty, witty, cultured – even opinionated! So on some level, the trip has helped to give me back to myself.

But what’s even better is that mum also really enjoyed her respite break. Since we got back she’s been talking about it non-stop. ‘In the home’ this, ‘in the home’ that. She asked me – why didn’t you leave me there longer? As she usually complains that I’ve left her there too long I was pleasantly surprised. I asked her – would you like to go there more often, not just when I go away?  And the upshot is, she’s going back to spend a few days there at the end of the month which means I can go to London for a couple of nights to spend time with friends. Fingers crossed this continues…

 

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.

It never rains but it pours

In December, I applied to the Carers Well-Being Fund for a grant to help to buy a new laptop. The one I’m using has given me sterling service but it’s getting very old. At New Year I learned they’ve granted me this money and only ask for me to get back to them as soon as possible with proof I’ve made the purchase. But the crazy thing is – I haven’t had a chance! It’s mad I know but it’s going to end up being at least a fortnight before I can apply myself properly to what will be a really important purchase which I can’t just rush into. As they say, it never rains but it pours….. and it’s literally been pouring without cease for days.

Normally we lead a very quiet life, the calendar more or less blank. But since New Year it’s been a different matter. We’ve been spared the dreadful flooding that some people have suffered but with the torrential rain, hail and gale force winds, the back fence has practically collapsed. The one we have is old, but I was hoping we wouldn’t need to replace it just yet. To my horror, I discovered it keeling over, large chunks out of it. I found every piece of wood I could to prop it up, hammering them in to the ground with a mallet. It felt quite good actually: action woman!

The house backs onto a road, so we need a proper, strong fence without delay. But I had no idea where to start. I began to research the merits of ‘waney’ vs. ‘feather edge’ panels; cement posts vs. wooden posts. Neighbours recommended fencing firms; so did the hairdresser. I set up appointments so they could quote. Then I had to decide who to choose. Now I’m hoping I made the right choice!!

In the middle of all this, the Falls Prevention Team came to see mum. They came back and put up several new grab rails to help stop mum losing her balance and falling over. The week after they’ll return to check on how it’s going. That’s three days of appointments.

On Monday, I took mum to the doctor and today we went to the hospital because we’ve finally got the pre-op appointment for the minor surgery they’ve suggested for her. I have a whole list of necessary errands to run and I arranged weeks ago to go to London overnight next week, which will take up two days there and back. This is not to mention arranging a time for the fence to be fixed.

Fingers crossed, I’ll have time to buy my new laptop in another week or so!!

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I get into the Xmas spirit.

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I’m getting on well with Father Christmas!

The 12 days of Christmas are upon us. This time of year can get pretty claustrophobic. The days are short. It doesn’t really get light until nearly 8 am and its dark soon after 4 pm. It isn’t as cold as it should be – which is worrying in global terms but does make going outside a bit easier. The shops opened again on Boxing Day but without public transport (there are some buses between Xmas and New Year, but on a limited service) that won’t make much difference to me.

There isn’t much to do except batten down the hatches and embrace the traditional way of dealing with this time after the winter solstice: stay at home and eat! Or, in a more modern tradition: watch TV. Living in the same house as mum, who’s a TV addict and hard of hearing to boot, it’s impossible for me to beat it. So, even I, who has only owned one TV in my whole life, am studying the Radio Times to check the schedules. If I can’t beat them, I might as well join’em.

And actually I always do try to make this time as nice as possible. For several years now I’ve thought ‘this might be mum’s last Xmas’. This year, for the first time, she wondered that herself.

Anyway, I knew I’d never get through the exhausting run up to Xmas and survive the holidays and the period of hibernation that follows, without first having a respite break to recharge my batteries. At the beginning of December, I got the train to Paris and stayed with some friends who live there. I saw exhibitions, went to the movies (for the first time in over a year!) and had interesting conversations, which I didn’t have to repeat ad nauseum! On my way back through London I managed a couple of get-togethers with old friends and by the time I returned here I felt quite like my old self. Mum also returned from her stay in the care home in very good spirits.

So, the Xmas tree is up, the candles are lit, the TV is on. And I have a novel and a bottle of scotch tucked away. Hopefully, mum and I will manage to survive this Huis-Clos type holiday period without any major flare ups!

And I wish all of you who read this, a happy and peaceful 2016!

 

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.

 

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A year has gone by.

A year has gone by since I started this blog. First I want to say a huge thank you to everyone who reads it, and who have left comments. I can’t tell you how much that means to me. There are times when I feel very cut off and isolated. During those times it’s great to know that what I’m writing is being read. I’m like a character marooned in outer space who suddenly gets a response to the signals she’s been sending off into the cosmos in the hope that someone somewhere might pick them up.

Having said that, I don’t think I made a mistake by moving in with mum. I miss my life in London, of course I do. But it’s also clear that her condition has deteriorated in the last twelve months – which is good because, if she’d stayed the same, I’d be wondering why I had bothered to give up my freedom! Whereas these days it’s obvious she can no longer manage on her own.

It’s been much harder work than I expected. I expected I’d help her with things she was struggling with, owing to her arthritis. I didn’t anticipate she would just put her feet up and expect to be waited on hand and foot! Also, I did not realise how confused she was mentally. I thought she had difficulties with the modern world, but I really had no idea of the true extent of it. Nor did I know anything about dementia. I know quite a bit more now!

I thought I’d be bored, but I battle to have time to myself. I never have a lie-in or an early night. Even when I was sick, I never got that luxury. It’s also annoying that I can’t control the use of my time. Last night, I thought – ‘I’ve got an hour, I’ll get the blog post finished’ – at which point there was a cry of distress from the bathroom. Mum was having one of her incidents. To sort it out and clear it up, took an hour. And by then, I just wanted to go to bed.

But the hardest thing is that I’m never alone in the house. I used to live by myself and I just wish I could have a day, even a few hours, when I didn’t have to worry about someone else’s presence! At night, if I can’t sleep, I’m always aware that I could wake mum up and indeed, when I go to sleep, I’m aware she could call me in the middle of the night, and I’d be duty bound to get up and tend to her! Of course, I’m by myself when I go out, but that’s not like staying at home and relaxing on the couch. And when I leave the house it’s normally because I have chores. A few friends have nobly made their way down to Chichester. We’ve generally met up for lunch which has been a wonderful chance to have some decent conversation – and also for me to get to know the city because of course, I’ve no prior connection to the place at all.

And now winter is coming – a time when we in the northern hemisphere spend a lot of time inside, on top of one another. I’ll admit the idea of spending a second winter here, does make me feel pretty gloomy. But I have strategies in place now to protect my boundaries. I have this blog, and most days I try to spend a couple of hours doing ‘creativity’ for my mental health – that’s to say, I’m writing a fantasy novel which is marvellous escapism. And I enjoyed the spinning workshop I did on my birthday. I even produced a small amount of wool – let’s see if that will lead me somewhere new and unknown during the next twelve months.

I lose my voice

I’ve been ill. Not super ill, just the sort of under-the-weather type virus when you want to curl up in your pyjamas, read magazines and watch DVDs. I wanted to sleep in and go to bed early. But I couldn’t do that, could I? I had to look after mum.

At first I thought I was just getting a cold perhaps because of the change of season. Then I started coughing until, finally, I lost my voice. This final symptom was actually quite restful, as I couldn’t keep answering mum’s repeated questions. I just smiled at her and shrugged.

There’s no doubt I was run down. The last few weeks have been hard work. Mum’s condition has deteriorated quite a bit. I’ve now developed strategies for dealing with various new issues – like complete nocturnal incontinence! – but it’s all put a lot more pressure on me. Normally when I get a cold or a virus I take it as a sign I need to rest, to stop, to recuperate – but I couldn’t do any of those things. And these last few days have made me realise how difficult it would be, if I did get properly sick.

I’ve recently registered for a scheme whereby, should anything happen to me, mum will receive 48 hours emergency care. Someone will come in and do the chores, get her meals etc but only if it’s an emergency. Hopefully we’ll never need to use it, but it won’t kick in if I just feel like taking to my bed. And although I managed to keep us fed and the washing done, I was struggling. Mum ran out of one of her medications, while photos of new great-granddaughter arrived in an email and were overlooked – just because I wasn’t on top of things.

During this time, Mum never once made an effort make herself a cup of tea or do anything else to help me nor did she expect any less help from me! She did repeatedly ask, in what I found an annoyingly concerned sort of voice, ‘are you taking any medication?’ I wanted to shout at her, ‘Of course I am! That’s how I’m keeping going! But what I really need is to lie down and rest!’ As I couldn’t say that, I just muttered things like, ‘yeah’, ‘Sure’, ‘Mmm’ or even ‘Leave me alone!’

I really hope I don’t get sick again because there’s no easy way to recover. It was my birthday this week, and I managed to have a fun morning learning how to spin (!) at a local museum of rural life – but I spent the afternoon asleep. I couldn’t face writing, emailing – or blogging – because once I’d done what I had to do, I really did not feel like doing anything else. So I feel like I lost my voice in more ways than one.

Fingers crossed I can stay healthy through the coming winter. I’m stocking up on the Vitamin C…

Mum becomes a great-grandma at last!

For quite a few years now, mum has been yearning to be a great-grandmother. I have a friend who has five grandchildren. Our families knew each other when we were growing up so mum knows my friend well, and she adopted these grand-kids as surrogate great-grandchildren … failing the appearance of any of her own.

Then, earlier this year, my niece became pregnant. Mum was thrilled but ever since then she’s been anxious. She’s told me several times that she doesn’t mind dying but she would like to live long enough to see the new baby. And now the baby, a little girl, has obligingly arrived three weeks early, thus cutting mum’s anxious waiting time short.

Well, it’s true she hasn’t actually seen the baby yet in real life. But she has seen photos that my niece kindly emailed. Being three weeks early, the baby is still very tiny and as yet in the prem unit at the local hospital. But, fingers crossed, mother and baby are both doing well.

I’ve already caught mum several times looking at herself in the mirror and telling herself ‘you are a great-grandmother.’ So I guess it’s a wonderful thing for her to have achieved. It must be frustrating, waiting for other people to provide her with what she wanted so much! But now, I wonder what she’ll have to look forward to. A visit from the baby I suppose. At nearly 3 hours drive away, it will be a while before that happens, though I guess it will eventually.

It’s interesting too that mum never once forgot the baby has arrived. And 90% of the time she remembers its first name – although she is still struggling with the surname. ‘Where does that name come from?’ she puzzles. ‘From the baby’s dad?’ I gently suggest.

But since then, it’s been easy to cheer mum up. When she gets doleful and miserable, I just have to remind her: you are a great-grandmother! And her face is wreathed in smiles.Baby!

I have a respite from the TV.

Last week, we both had a respite break. Mum went to a residential home where she has stayed before. I spent three nights at the Chalice Well retreat house in Glastonbury. I like to go there once a year, if I can. It allows me to process stuff that I can never fully process while daily life is going on. I can let my mind and my spirit enter those deep places where my true thoughts lie.

As always, Mum started to get anxious about going away. In fact, it was as stressful preparing her to go away for 4 nights as to go away for a couple of weeks! The morning we were due to leave, she got herself in a terrible state. I had to tend to her, clean up mess, change sheets. With a sinking heart, I rang up and cancelled my taxi to the station. But I had a sneaking suspicion it was all a case of nerves and indeed, she eventually settled down. Just before the paid carer was due to arrive, I ordered a second cab and tiptoed away.

By now I was running late. I had to get there by 5pm or there would be difficulties getting the key. The journey by public transport took six hours and at one point, my train was held up and I began to panic. I made it in time but I was very tired – and before I could rest, I had to walk down to the shops and buy something to eat. That night, I felt ghastly, couldn’t sleep – I decided I must be detoxing. The next morning, the first thing that came into my mind was: the television is doing my head in!!!

I don’t mind cleaning up blood and shit, I don’t mind the endless washing when mum’s wet the bed. I don’t like doing it, but I understand these are distressing episodes for mum – and part of the reason I’m living here. The interminable washing/shopping/cooking etc bore me, but I accept it’s an inevitable part of caring for someone who can’t take care of themselves. Her memory loss has been difficult to deal with, but this online course on dementia is helping me to cope. However, when I do get time to myself, when I’m not on deck as it were, that time is being contaminated by the brain-flattening, intuition-crushing effects of the continual blaring TV.

I didn’t own a TV before I came here. I did sometimes watch programmes on my computer but, as a rule, I prefer to listen to the radio, or music. Mum has the television on for several hours every day. She has the volume turned up so loud I can hear it even if I’m in another room. It’s a small house, and it’s impossible to get away from the noise. What’s doubly annoying, is that she often falls asleep in front of it. So I can spend an hour vainly trying to blank out the TV so I can read – and then discover mum’s not even been watching the programme! I have got headphones, but sometimes, I don’t want to listen to music or the radio – I just want silence!

There’s no hope of weaning mum away from something that has been her life-line for years so, the only answer would be to close the door of my room. But I felt that would be a cold, unfriendly act which would make mum feel abandoned. However, I’ve now reassessed the situation. Since I got back, I have been closing my door, even though I know it probably upsets her. And I am feeling so much better! Not only do I get to read, write and go online in peace, I feel like I’ve asserted my right to spend my evenings as I wish.

home 071The wonderful Chalice Well

The wonderful Chalice Well