Category Archives: isolation of carers

I realise how much I’ve given up!

I don’t mean to be self-pitying, I do try to be positive. But recently on a brief trip to London I happened to take a bus ride through an area I hadn’t been to in ages. In fact, I haven’t been there since I moved down here. It was a lovely sunny spring day and everything looked fresh. We passed a nice old traditional pub that had recently been given a smart coat of paint. It looked particularly appealing next to the bright spring green leaves of the trees in an adjoining inner-city square. I read the name of the pub and did a double take. The Calthorpe Arms! It was a place I’d known well. Upstairs, once a month, it hosts a Cuban film night that I used to go to. I went not only because of my fond memories of a holiday in Cuba but also because at that point I was learning Spanish. I hadn’t recognised the pub because I used to approach it from the opposite direction, plus the meetings were in the evening so I usually came here in the dark.

If I had realised where I was, perhaps I would have unconsciously prepared myself. But with the unexpected shock of recognition, I was overwhelmed by a visceral sense of what I’d given up. I used to have A Life, I used to do Interesting Things, meet Interesting People – and I’d abandoned it all. Of course, I only did that because I was at my wits’ end. 5 years ago, it had become impossible to juggle mum’s needs and my own life. I often had to drop everything and just get on the next train down here – or, once here, I ended up staying for much longer than expected. When I did get back home, my life had been so disrupted, I’d be so tired and so behind with things, that it would take days to get myself straight again. And then… the same thing would happen again. My brother was still working full-time so it all fell onto my shoulders.

In the end, I couldn’t see any alternative: I had to move down here full-time. Of course, I never dreamt that, 5 years later, mum would still be alive. And, I have to admit, I didn’t realise just how full-on it was going to be. I had plans to write a novel, to do all kinds of things, but as soon as I arrived mum gave up doing anything. She expected me to do it all – just like my father had. She tired him out and I said, well she won’t tire me out because I’m still relatively young – but in fact, she did exhaust me. And I’ve developed my own health problems – not something I foresaw! Plus, I’m not getting any younger myself. I’m beginning to wonder whether I’ll ever be able to do any of the things I’d hoped to do ‘in the future’.

Even though I no longer have to look after mum 24/7, I still have to plan my week around visiting her. I had to go in over the long Easter holiday and I had to walk back – as buses are scarce on Sundays and public holidays. But I can’t not go and see her just because it’s inconvenient, especially not now she seems to be fading. By the time I got home, my hips had begun to ache. Even though my walking is improving, I must still be careful if I want to recover – ( and I need to recover: not being able to walk any distance is driving me crazy!) When I’m not visiting mum, I can’t relax. I’m faced with the task of cleaning and sorting and de-cluttering the house which is no small task. Then there’s the garden. I’ve asked my brother for more help but so far none has been forthcoming.

Brother did ask me what my plans were. I said, I can’t have any plans because I don’t know how long I’m going to be here. The only way I can cope is to not think about this sort of stuff, not think about the future. I try to just get up and get through each day. I try to be mindful, to be in the moment. On the whole, I’m successful but, passing that pub made my tightly controlled equilibrium slip and has triggered a sense of despair. It brought me face-to-face with the truth that I’m here living this straightened existence without any of the things I care about: museums, galleries, films, intellectual discourse with like-minded people. I go out one evening a month when a woman I met, who does seem nice, offers me a lift to the Local History Society. And I go because I am making an attempt to be positive about a place where I feel like a fish out of water but where I’ve been living unhappily for nearly 5 years. Well, it’s by the sea. I suppose that’s something.

Anyway, I am getting my equilibrium back – slowly. There’s no alternative after all.

 

I find Dad’s love letters

When I saw mum in the hospital and she looked like she was at death’s door, a lot of thoughts flashed through my mind. As, amazingly, she now seems to be on the road to recovery, I’ve been unpicking those thoughts. The first one was: She can’t die yet! I haven’t cleared out the house. It’s too untidy for me to invite people for a funeral!

When I moved down here, my stuff was stored in the garage. When mum moved into the Care Home, I moved my things out of the garage but I couldn’t put them away. To do that, I needed to make space, which meant clearing out mum’s drawers and cupboards. But I didn’t feel I could do that while there was any possibility she might return to live in the house. And of course, I had my surgery, developed the problems with walking etc etc so I didn’t have the energy, the physical strength – or the sense of psychological permission to get on with clearing out the place.

However, things have changed and one of my new year resolutions was to make a start on this task of de-clutterng. I began with mum’s bedside cabinet. The top drawer was full of documents: some from banks, some from hospitals, some possibly important, some probably not. Some went into a pending pile, some in the bin. The second drawer was full of scarves – most of which will go to the charity shop. The lower drawer had a load of old nail varnish (in the bin), old hair rollers (in the bin), some quite nice hair slides which I don’t remember mum ever using but which I might use (in the pile that will be kept) and then, right at the very back of the bottom drawer: a mysterious box, quite old but with a rather nice design on the lid.

I peeked inside: it was full of old letters. I needed my reading glasses before I could explore further so I put them to one side. When I did sit down with them, I saw the envelopes were addressed to my mum in her family name, that is to say – before she was married. My heart skipped a beat. Mum had a fiancé who was lost in the retreat to Dunkirk in 1940. Had she kept his letters secretly all these years? I opened the first one and saw it had been sent from an army camp in Yorkshire. My dad had been stationed in an army camp in Yorkshire. Indeed, he had proposed to mum while they were walking round the roman walls that encircle York. I relaxed. The letters were from Dad.

I skim read a couple, not really wanting to pry and yet curious. I was a little surprised because Dad always said he wasn’t much good at writing. I wondered whether he had asked someone else to write these letters but they seemed too personal, very passionate declarations of love so I thought it unlikely he’d dictated them to someone else. I also realised I’d never really heard his voice. Dad never talked a lot, was a self-professed ‘man of few words’. When I was younger, he and I never really communicated. We tended to have rows about politics – or other things he didn’t agree with concerning the way I was leading my life. It was only in later years we really had anything that could pass as a conversation. I’d certainly never heard him speak like this: fluently, ardently. I looked deeper in the pile. Here the letters were now addressed to my mother as a married woman: his darling wife.

They got married just before the Normandy Landings in 1944. Dad was part of the D-Day force; he had made his way through France, across the bridge at Arnhem and into Belgium. There were no letters from his billet in Brussels – when he stayed with a family with whom we kept in touch with for many years. In fact, I had dinner with them on a visit to Belgium in 1969. And they had told me, my Dad never went out, he only wanted to write letters to his beloved wife. The last letter in the box is from an army camp in England saying he was about to be de-mobbed. That he would be coming home and that this was the last time they would ever be separated.

I got an insight into their relationship. I’ve always known their marriage was a love match but I wasn’t quite prepared for my dad’s ardent outpourings (all very chaste and romantic I’m pleased to add, so I didn’t feel I’d uncovered anything too embarrassing).

But one thing does make me feel uncomfortable: apart from the letters, there was one other thing in the box – a photo of me as a baby. I was the outcome of this outpouring of love! That does feel weird, although I haven’t yet worked out why.

I obviously can’t throw these letters away but how would mum react if I took them to show her? Would she be pleased to see them or cross that I had found them? I haven’t yet made up my mind about that.

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The letters

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Mum and dad on their wedding day.

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Me in my pram!

Mum fails (or passes?) a test

A couple of years ago, I tried to get mum a clinical diagnosis of dementia. But although the Doc agreed there were issues with her short-term memory, they would not agree to give her a formal diagnosis. As I live with her full time, I felt they’d made a mistake, but there was nothing to be done.

After my recent brush with the bureaucrat, I realised a firm diagnosis would be helpful when I next had to deal with the bureaucracy, so I asked them to test mum again. This time, her results were greatly improved – at least from my point of view. Some might say she’s deteriorated. Her score had dropped sufficiently for them to decide (taking all other factors into account) that they’d give her the diagnosis without the need of a brain scan. (Thank goodness for that!) And mum is going downhill quite rapidly. She’s increasingly confused, losing words, forgetting names, getting muddled about the time of day. She can no longer work out how to switch on the tv, and has to be instructed on what to do during her trips to the toilet.

Sometimes though, especially when she wakes from a nap, her face is lit with a beatific smile, as if she’s stoned or she’s been in another dimension and is now surprised to find herself here, in this mundane world of material reality.

Whatever the Social Services might claim, it’s just not safe for us here anymore. Mum’s getting more and more unsteady. In fact, she had another fall the week before last, again on the steps coming up into the house from the conservatory. This time she was on the bottom step, so she just tipped back onto the carpeted floor. I was behind her once again, and once again cushioned her fall, altho I didn’t have to take her weight and manoeuvre her into a safe position like the last time. This time, I just stressed my neck, my back (once again), my knee (where I had an operation 20 years ago), and some general muscle ache around the ribs. Luckily, my brother came that weekend. Having a couple of days off helped me to recover – as did having a very nice time with friends in London!

I feel mean, but I’ve banned mum from the conservatory, where she likes to sit because it looks out over the garden. I’m terrified that, in the time left before we find a permanent place for her in a care home, mum’ll have another fall and this time it’ll be catastrophic – either for her or for me. Every moment she spends on her feet, I worry.

I especially don’t want her to injure herself before she goes on holiday! Yes! We’re planning to try and get mum down to Somerset for a week. She’s long expressed a wish to see my brother’s new house and to return to an area where she has fond memories of a holiday with dad. It’s taken quite a bit of arranging, but it has been arranged. I really hope it will all go smoothly and that the journey won’t be too much for her. We leave tomorrow. Watch this space, as they say!!

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!

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 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.

 

I am overwhelmed by weeds.

There are triffids in the garden. Well, not exactly. There are no homicidal plants that will kill and eat you but there is an invasive weed. And it has made me feel completely overwhelmed.

A few years ago my mother’s neighbours complained about a weed in her garden that could spread into theirs. At that point, she did have a gardener but he moved on, and being an old lady on her own, mum was unable to find another. Perhaps if the neighbours had helped her then, things might not have got to this point. They are on the whole excellent neighbours but they did not help mum find a new gardener.

She does have a guy who mows the lawn. Last summer I asked him to help me with garden. It isn’t that big but it had become an impenetrable jungle and it was beyond me to tame it. He worked really hard and cleared it back; he also did some weeding. He told me, this weed is very difficult to eradicate, it’ll require quite a bit of work and could take several years. He gave me a name: Ground Elder.

Trouble is I’m not a gardener. And I had so much else on my mind. So I didn’t really take him seriously. Then the other week I noticed spring was here and I also noticed the weed was indeed beginning to creep under the fence into the neighbours’ garden. So I thought it might be time to sort it out. I googled it and oh, I did not like what I read. Actually, I despaired.

It really is difficult to eradicate, it will take hours of hand weeding and digging possibly over several seasons. But I haven’t got a lot of spare time and energy for hand weeding, and I haven’t got several seasons – or at least, I don’t want to find myself trapped here after mum has passed on.

I felt crushed and completely at a loss. I didn’t sleep for one whole night feeling utterly powerless against this plant that threatened to take over the garden and exhaust me in the process. However, on the advice of a friend who gardens, I spoke to the gardener.  Yesterday he spent several hours here and really attacked the growth. Now, hopefully, he will help me to keep on battering at it and digging it out and eventually it will be eradicated. I hope it will work – because for me it really felt like the last straw. Or the last weed….

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.

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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