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 is worn out.

Recently I went to Cornwall to look after a cat that belongs to some friends.  I thought it would be a pleasant break but it turned out to be a proper holiday. The weather wasn’t wonderful but the cat sat on my lap and let herself be stroked – mind you, in payment she wanted to be treated like an empress. And indeed, I did obey her every command! But as well as offering pet-therapy, my friends’ house is in a beautiful setting, right on the cliffs just north of Land’s End. I could sit on the couch with the cat on my lap and watch the weather sweeping in over the sea straight from the wild Atlantic Ocean – and it’s true quite a lot of wind, mist and rain did sweep in. But the house was full of interesting books – and the bus stopped right outside so I was able to visit St Ives and Penzance, and even made a 6 hour round trip – which was very scenic, of course – to Truro, where I got a lot of help from the Cornish Family History Society for my research into mum’s family.

Half-way through my visit, I received a text from Liz the Carer, who went into see mum while I was away. She said all was well and they were sitting together, looking at the Postcard of Cornwall that I’d sent to mum. Unfortunately, only a couple of hours later, mum collapsed at the dining table while she was eating lunch. They were helping her walk into the lounge when she collapsed again and fell. The Doctor was called. In fact, by the time I got back the following week, the Doctor had been several times.

When I got back and went in to see her, for the first time ever, she wasn’t sitting in the communal lounge but was still in her room. And she didn’t seem to be interested in my visit. She seemed happy enough, and quite peaceful. Said she was enjoying just sitting and thinking. She talked about me when I was a little girl, but didn’t seem to quite understand that I was that same person, now somewhat older. Sometimes she seemed to think she was talking to her sister and it’s true, I do look like my aunt. But, for me, the main issue was that her energy was very low. And indeed, she told me that she felt ‘worn out’.

A couple of days later it was Mothers’ Day, and so my brother made the effort to come. I didn’t say anything to him but when he returned from visiting her, he was quite down in the mouth. She wasn’t like mum, he said. She seems to have lost her ‘bounce’. I agreed.

Next time I went into the Care Home, the boss took me to one side. The Doctor had said there was nothing specifically wrong with mum that could be treated. Basically, mum has reached the last few months of her life. She is, literally, worn out. But while she doesn’t seem to be completely aware of her surroundings, she does seem calm and happy enough to sit and day dream and drift off to sleep. And she doesn’t think she’s stuck in the Home. No! Some of those day-dreams involve going out to the shops or down to the sea. Which can only be a good thing.

She is very tough old bird, as they say. When I went in yesterday, I was amazed to find her dressed and sitting up in her chair. She thought she still lived in Brixton, in the house where she lived during the war, but otherwise she was bright and very chatty. She was still in her room, but they told me she’d been downstairs to the lounge the day before. So, although she does seem to have gone downhill, this new phase could go on for several moons yet!

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The edge of England! And the view from my friends’ cottage.

20190317_114205The cat naturally wanted to sit in the middle of the map when I was trying to find my great-great-great grandparents’ farm!

The mysterious St Michael’s Mount from Penzance and St Ives from the bus station!20190320_142042

If you ever visit St Ives, don’t miss the wonderful Barbara Hepworth Sculpture garden!

Mum lives two realities at once.

First of all, thanks for all the helpful advice re the dilemma I had a few weeks ago over dad’s love letters. In the end, I did tell mum I’d found them. She seemed to be having a good day and was quite like her old self so I told her I’d been sorting things out and had come across a box of letters from dad.

Immediately, her face lit up. ‘I kept them!’ she said, so she knew exactly what I meant. I asked if she’d like to have them with her and she said she would. But when I took them in, she wasn’t having a good day. When I showed them to her, she didn’t know what they were. She didn’t recognise the box and the letters didn’t seem to have any resonance for her at all, even when I pointed out her old address and the war-time postage stamps.  When I showed her my baby photo she asked, ‘Who’s that? It looks familiar.’

Luckily, I found her lack of recognition amusing. I have after all changed quite a bit over the years.

It seems the only babies mum cares about these days are my brother’s children. Ever since her first fall she’s been living in a time warp of nearly 35 years ago at a time when brother’s first wife tragically died and, for a while, his young, motherless children were cared for by their grandparents. And so Mum asks continually if the children are ok? They’re upstairs, she says, but they haven’t made any noise. I did ask if ‘the children’ were me and my brother, but no, it seems she does mean her grandchildren.

It’s obvious she’s returned to an event which must have been deeply concerning for her. So, I reassure her that the children are fine. They are in their own home. Then I add: they are grown-up now with children of their own. In fact, the babies who come to see you are not my brother’s children but his grandchildren!

Last week, my niece turned 40. I got mum to sign her birthday card. Mum shook her head in wonderment. ‘40! Granddaughter is 40!’ Then she said, ‘The mind is a strange thing. It’s like I am living two different times at the same time and they get muddled up and meld together.’

I found this an incredibly lucid comment. And a possible window into what it’s like to have dementia.

I told her: you’re like someone time-travelling with Dr Who in the Tardis. Sometimes being in the present while simultaneously, being in the past. As she’s a fan of Dr Who, this made her smile.

These days, as I live alone and am somewhat isolated, I often think about the past even if it’s simply on the level of: how on earth did I get myself into this situation? And I’ve found certain memories isolate themselves and continually reoccur – apparently, they’re still very much alive in my subconscious. However, I do know that they are memories. Similarly, when I see a photo taken 40 years ago, I know it’s a photo of me yet at the same time, it’s a photo of someone who’s not me anymore.

For mum, it’s not simply that she’s lost her short-term memory. Her memories, especially ones that are particularly meaningful, seem to have pushed themselves into the centre of her reality and are replaying themselves as if they are happening now. And she can’t separate the past from the present.

But it was interesting she could grasp the concept of a dual universe; of the fact that she’s living in concurrent realities. But of course, the next time the subject comes up she’ll have forgotten all about our conversation and will ask me once again whether I’ve seen my father or if the children are all right?

 

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.

 

Mum gives us cause for concern

Three weeks ago mum celebrated her 98th birthday. She was in fine form. The grandchildren came with their kids – her beloved babies. She was very happy to see everyone and, more to the point, remembered their visit.

Two weeks ago, I was up in London for a week full of get-togethers with my friends interspersed with visits to exhibitions. I was feeling quite like my old self. Then, the day before I was due to come back here, I got a call from A&E at the local hospital. ‘Do you know your mother is with us?’

No, I told him, I didn’t know. I learned that mum hadn’t been very well that weekend, muddled in the head and unsteady on her feet so the staff at the Care Home had moved her to a room closer to where the night staff sit. Unfortunately, in the middle of the night mum tried to get out of bed. She can’t stand without help and needs to hold onto something at all times, but it seems she had an infection which made her confused, perhaps she was dreaming she could walk or was dancing. At any event she came crashing down and smashed her head on the bedside table.

Initially, the hospital doctor said they were going to send her home that evening but, after an intervention by one of the physiotherapists and several more phone calls to me, they decided to keep her in for the night under observation. When I saw her the next day, I couldn’t believe they had even considered sending her home. She looked terrible, her face was purple and yellow with bruising and she was linked up to various monitors and intravenous drips. When I arrived, she was asleep and appeared to be in a sort of coma. They told me she’d had a bleed on the brain and a possible fracture in a neck vertebra. I really thought she was on her death bed. I texted my brother: You have to come ASAP!

Eventually mum woke up; they even got her to sit in a chair, but she was still very confused. She had no sense of her surroundings, had no idea she was in hospital and appeared to be in a time warp -worrying about events that happened 30 years ago.

The next day, when I went back, mum had been moved to an isolation ward because she’d had mild diarrhoea and been vomiting. Again, she was strapped up to machines and being dosed with intravenous antibiotics. It was a relief when my brother arrived, so I didn’t feel I had to bear all the responsibility. Mum was still very confused; she kept saying she wanted to lie down when she was already lying down. She kept trying to get up and out of bed when she was already in bed and indeed, had she managed to get up, she would have fallen again as she had no sense she might need some support to help her stand or walk.

The third day, mum was calmer and the infection seemed to be subsiding. She was, however, still convinced she had fallen in the street outside the house of her best friend – who she first met during the War. And perhaps mum was remembering something that really did happen at that time, but she had no recollection of the Care Home or of falling out of bed. When I said that was what had happened, she got quite upset and accused me of lying; nor would she accept that her best friend had been dead for many years. While I was sitting with her, two physiotherapists came and fitted her with a neck brace which she must wear for the next few weeks. They did say the bleeding on the brain had stopped and what had showed up on the scan might be the shadow of an old injury.

That evening they moved mum up to a general ward. When I got there on the 4th day, the nurse said they were sending her back to the Care Home that afternoon. This took me by surprise. I admit I was relieved. Not only because no one wants to stay in hospital any longer than they need to, but also because the round trip on the bus takes at least 3 hours. The weather is getting more seasonal, wet and windy while the sun sets at 4pm and with the dark comes increasing chill so the journey was exhausting me. However, I was genuinely amazed that mum was able to recover so quickly from what was a major incident and really impressed by her strength and resilience.

It’s now over a week since she was sent Home. She’s still very tired, still caught in a time warp of about 30 years ago. She’s very, very uncomfortable in the neck brace. Also, she still looks dreadful, her face is green, yellow and purple like a Frankenstein mask for Halloween. I’ve gone into the Care Home nearly every day to make sure she’s ok. This is much easier to do than get to the hospital, but I’ve also been trying to get everything ready for Xmas. Believe me, I’ll be very glad when everything’s been done. Of course, I’ll also be glad if mum does settle down. I trust the Care Home to look after her but she’s so miserable at the moment and I wonder if at her age she’ll have the stamina to properly recover. If she does, then I think there really is a chance she’ll make it to a 100 and get that telegram from the Queen – so I’d better prepare myself for having to live here for some time to come.

In the short term, I was concerned she’d be too frail to enjoy Xmas, not only because it’s Xmas but because the grandchildren were due to come on Boxing Day and she does love to see The Babies. I did not want to cancel their visit when, for all I knew, she’d be able to enjoy it. I held off posting this until I knew how it would go. In the event she was fine and able to enjoy seeing the children. She was due to see a pantomime last week which she would have thoroughly enjoyed but of course it was impossible for her to go. It’s such a shame she had this fall. I wish it hadn’t happened, but it did.

Best wishes to you all for 2019!

 

 

 

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.

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!

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 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