Tag Archives: isolation of carers

I can’t seem to focus on anything.

It’s been a strange time. I don’t feel particularly sad or grief stricken, but my brain doesn’t seem to be functioning normally. I’ve had several ideas for writing the blog and every one of them slid sideways, out of the frame. It’s like my brain is fogged and I can only think about what’s in front of my eyes. And even that seems to involve some issues.

In the middle of August, I went to stay with old friends who’ve moved to a city where I’ve never been and now live in a house where I’ve never stayed. So it was the best of both worlds: a dear pal I could share my thoughts and feelings with – and a new environment that had no links with the past. I returned here feeling refreshed but – there was a strange problem: I was developing a stye in my eye. I’ve never had one of those in my life! But I knew that the psychological ‘tag’ for such things is that there’s something you’re ‘not looking at’ or ‘not seeing’.

I wrote this thought down in my journal. Then I stopped writing, raised my eyes and looked around with conscious intent. I saw that I was surrounded by stuff. Stuff that I need to sort out. Stuff that belonged to my parents. Stuff that is overwhelming me. Yet it is also Stuff that must be dealt with before I can even think about moving on from here. So. There was my answer. I’ve been sitting here reading fantasy novels and thinking about holidays – holidays I know very well I shall never book. But, if I do want to move forward, then I have to clear away all the Stuff.

I bathed my eye in warm water – I even rubbed it with a warmed gold ring – and after a few days the swelling and soreness went away. But I also began to work. It was a long weekend and the cricket was on the radio. I began the task of emptying out my mother’s clothes from the wardrobe, and from the remaining drawers of her dressing table. (I had of course already begun this task over the last months, but only in a desultory fashion). Now I packed the clothes into bags and arranged for a Charity to pick them up.

The cricket was exciting; the neighbours were making some dreadful racket in the garden, grinding paving stones for a patio so, although the weather was fine, I forced myself to carry on and empty the storage drawers under the bed. In some ways, this was more upsetting than packing up the clothes, for here were freshly laundered sheets, carefully washed and ironed and put away – which mum must have done when she was still able to do that sort of thing and before she reverted to just using the same easy wash and wear bed linen that she was using when I arrived. I got a sense of a house-proud, happy woman. But I gritted my teeth. I stashed it all into bags. And piled all the bags up in the garage.

When the guy came to collect the bags, I almost cried out to him: no! It’s a mistake, don’t take them! But I resisted. And now, they are gone. There is a sequel to all of this which I’ll write about next. Suffice it to say that I’ve made a start. Chores like this are not easy psychologically but, as my brain isn’t functioning normally, it probably is quite a good idea to try and complete these practical tasks. Even though my emotionally hardwired brain tells me ‘don’t do it!’ my rational brain knows very well that there’s no point in delaying: especially as, until it’s done I will have no choice but to continue to live here in a place where I don’t feel at home and which I don’t actually like very much. No one else is going to help me do it. My brother won’t. He wouldn’t mind if I spent the next 10 years helplessly sitting here surrounded by chaos.

By the way, I did finally manage to collect mum’s ashes. I brought them home on the bus, mainly because the bus was there, stopped right outside the funeral directors – but also because it saved me having to talk to a cab driver. ‘What have you got there?’ ‘Oh, just my mother’s ashes!’ I apologised to her for not carrying her home along the sea front like I did with dad, but I did put her on the bus seat beside me so she could look out of the window (!?!). When I got back here, I said: well, you’re home, as you wished to be. And it’s not as upsetting to have them here as I feared it would be. So I no longer feel under pressure to find a suitable place to scatter them as soon as possible. I am happy to take time to find the right place.

Some photos I found:

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1953 Coronation Day Party. I’m the little girl at the side with her drink of juice!

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At Bracklesham Bay which isn’t that far along the coast from where I am now, but the charming farm and duck pond are long gone.

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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.

 

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.

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…