Tag Archives: stress of being a carer

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.

 

I have issues with the hospital

.IMG-20190131-WA0000When mum had her fall in December, the hospital sent her neck scan to a major orthopaedic unit at a hospital about 30 miles away. The results had been inconclusive – they couldn’t tell whether it was an old neck fracture or a new one, so they decided she’d better wear a neck brace for between 2 and 6 weeks with a review after 2 weeks. As that would fall within the Xmas holiday period, I didn’t think much about it when they didn’t contact us, but as it drew near to 6 weeks, I asked the Care Home staff if they’d heard anything.

Mum is incredibly uncomfortable with the brace: she can’t sleep properly, she can’t eat properly, she needs a straw to drink. It rubs on her chest and under her chin. With the result, said the Care Home, that she keeps trying to take it off.

They assured me they’d been phoning the hospital but had not yet got any answers. When we were into the 7th week, they said the Doctor’s secretary had rung to say he would be looking at the case. But it had nothing to do with any doctor! The physios had put it on, following the orders of the main hospital. This Doctor wouldn’t know anything about it. I decided I was going to take matters into my own hands and put it in writing to the hospital that, if they did not respond soon, we were going to take the brace off anyway.

At this point the paramedic from the local GP’s surgery got involved. I know him, he came to the house a few times when mum was still living at home. He said, leave it with him, he’d sort it out and indeed, he rang me back the next day. He had got in touch with the physio. She’d been on holiday, was shocked to hear nothing had been done and would quickly check and get back to him.

That was on the Wednesday morning. On Wednesday night, mum fell out of bed again and smashed her head again. Apparently, she was rolling over, trying to take off the neck brace and rolled off the bed. I had a call on Thursday morning, had to drop everything and go off to the hospital. Mum had an x-ray, then a scan. It’s an ill wind, everyone said, because then maybe we can get this problem with the brace sorted out. But really mum should not have had this second fall. She bashed her face again to the extent that one of her eyes was completely swollen up, hurt her back again and for the first few days had to have an oxygen mask. She’s 98 – she doesn’t need this and quite frankly neither do I!

The first day, I spent 7 hours at the hospital. At that point it had started to snow, so I phoned a cab and got home just before the snow became heavy. I know we don’t have a lot of snow compared to many places, but by the same token, we aren’t equipped for it. The next morning was below freezing and I got a cab into town as it was too slippery and dangerous to walk to the bus stop – by the evening, the snow had thankfully cleared although it was still bitterly cold.

I can’t afford to take a taxi every time I go, so my other journeys to and from the hospital have been on the bus and they have been horrendous. It can take between 1 ½ hours and 2 hours each way, depending on the connections. Most of the time it’s been raining, with a bitterly cold wind. I’ve managed to grab a bit of shopping in between waiting for the bus – but add the travelling to spending several hours in the hospital – and it’s a pretty long day. That’s what bureaucrats forget. Even though I’m no longer mum’s official carer I’m still expected to drop everything, cancel appointments, whatever and head off to the hospital. (And I have to say, there are always quite a few other adult daughters sitting with their aged parent in the geriatric ward and they all have something to say about the lack of support from their other siblings).

Anyway – back to mum. The first couple of days they classed her as having a spinal injury and made her lie flat – which is very uncomfortable for her. As they’ve agreed it’s an old injury and she’s therefore been walking around with it for a least a couple of years – I asked if she could sit up in a chair- while wearing the brace, naturally! And they did finally agree to that. Today the Care Home are going into to assess whether they’ll accept her back. I hope they will as she’s happy there and also, if they don’t – well, I’ll cross that bridge if I have to. And it will be me who has to sort things out. After one text on Friday afternoon I had no word from my brother until a brief text on Tuesday evening. As you can imagine, I could hardly be bothered to reply to him

But the fact remains, if the hospital had only got back to us when they said they would, mum might never have had this second fall.

 

We are going to take a risk.

I’m writing this a few days before mum’s 97th birthday. In the last few weeks, her two grandchildren have both had new babies. She’s convinced they belong to my brother and his partner, who are both in their 60’s, and needs to be reminded that the new babies are my brother’s grandchildren. He did once, it is true, have a little girl and boy, but now they are grown up and have started families of their own.

The young couples have offered to come and visit mum the weekend of her birthday. But two new-borns, a very active two-year old and seven adults can’t descend on the Care Home. They will have to come to the house.  If mum wants to see The New Babies and her much-loved Great-Granddaughter, which of course she does, she can also come to the house. But she has to understand that she can’t sleep here. She will have to go back to the Care Home. I have explained this to her, and sometimes she seems to understand and sometimes she doesn’t. So, what to do for the best?

I’ve discussed this with several people and most of them say it’s too risky. It will unsettle mum and she’ll get too upset. But I still think it’s worth the risk for her to see The New Babies, which she very much wants to do. A Carer who’s become like a family friend, takes mum out for a drive once a week. When I mentioned my dilemma to her, she immediately offered to pick mum up from the Home and bring her to the house, then collect mum at 5pm and return her to the Home.

This has actually been my main concern. Because the problem will be when it’s time for mum to leave. If the Carer comes, mum will hopefully go with her without too much fuss – whereas she’s quite likely to play us up and give us a hard time. And so, it’s been arranged.

Recently, one of my friends suggested a strategy they used with her own elderly mother: tell mum she has two homes now. Her Own Home is still here, and I am looking after it, but she can’t live there anymore. I am trying this approach, telling mum she’s going to visit her Own Home and see The Babies but, because she’s so old now (she does tend to forget just how old she is, bless her!) and needs so much looking after that she needs to live in the Care Home where she can be safe and cared for.

In a few days, we’ll find out whether we were right to take the risk! This morning mum did say she understood that The Babies couldn’t come to the Care Home but that she could see them, if she came to the house. Fingers crossed it will all work out well. I really hope it does.

I am overtaken by events

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

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

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

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

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

Mum loses a tooth

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

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

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

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

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

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

We survive Granddaughter’s wedding

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

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

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

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

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

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

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

My niece is getting married

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

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

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

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

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

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

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

I 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…

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