Mum passes through the veil

Mum died a few days ago. Her death was peaceful, she was not on her own. And she was able to stay in the Care Home where she felt safe and comfortable, where they knew her and cared about her, until the very end. I arrived a couple of hours after she’d actually passed and they had dressed her and given her a flower and her favourite soft toy. She looked at peace. In fact, she looked like she was asleep. I kept staring at her thinking that if I called her, she might indeed wake up. But of course, she wasn’t breathing. Her heart, which had been fluttering fast, was still.

The fact that she has actually died is hard to take in. We expected her to die several times in the past and she bounced back. But this time it’s actually happened.

We had been warned that her life could be over in a matter of days – or possibly weeks. It was clear that she had reached the end of her days, that it really was just a question of time. But given her past track record of surprizing us all when she seemed to be on her death-bed, I did think she would live for another week or two. Brother sadly arrived a few hours too late. An old friend who was very close to Mum, had arranged to come two days later. It didn’t occur to me that they would miss saying goodbye to her. Indeed, when I left her, it didn’t occur to me that I wouldn’t see her again.

The last time I saw her, she was still conscious, still talking – although her mind was obviously wandering. Her last words to me were: Where are you going? Shopping, I told her, but I’ll be back tomorrow. Well, I was back tomorrow but it was not as I’d expected. But I do know that she was tired; she was worn out. It was her time. She officially died of Old Age – not many people manage that!

And now, there’s so much to do! That’s good because otherwise I might lie on the couch like a slug. Even though it was expected and she was very old, it’s still a shock on a deep emotional level. To have your mother die is archetypal in ways I haven’t yet thought through. I have to wait for the process to be completed. And although this is going to make a difference to my life, at the moment I can’t really think about that. I’m focused on giving her a good send-off. I want the funeral to be as good as possible because you don’t get a second chance at it. Brother has been back here and has been a great help. It’s a pity he wasn’t more help when she was still alive. He is very upset – as I knew he would be – and keen for the funeral to go well. I’ve been taken aback by just how involved he wants to be in the planning – and of course, I have appreciated being able to share the burden of decision-making with him.

During the last few years, to stop myself falling into despair over the limitations of my life down here, I had to keep a tight control of my emotions. I had to mentally prepare for the possibility that she might live to be 100. (In the end she missed that milestone by 18 months which, on some level, I do think is a shame.) But at the moment I can’t really unravel my thoughts. All I want to do is clean. Luckily there’s quite a bit of cleaning to do!

Mum was always convinced Dad would find her when she passed across. Perhaps he came to her and called her and she went with him happily. I also hope that she’s left behind the arthritis that crippled her and made her house-bound and unable to do much – and also blighted my Dad’s life as it brought to an end their socialising, their dancing and fancy-dress parties and holidays which they enjoyed so much. Everyone has their own beliefs but I believe mum has passed peacefully through the veil between the worlds, that’s she’s found my Dad and that they are dancing together once again.

RIP MUM 1920-2019

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Mum has been in Quarantine

Last week I came back from a great trip visiting various dear friends in Scotland and London. As usual after a holiday, I came home feeling tired and happy. But I knew that, instead of being able to take advantage of the customary post-holiday glow – and the renewed energy that resulted from it, I’d have to immediately factor in a visit to mum.

I came home on the Friday, after visiting the fab Mary Quant exhibition at the V&A in London. While I was there, I got a text from Liz the Carer who told me she was sitting with mum and reading my postcard from Scotland. So, on Saturday morning I decided to spend the day shopping for food, catching up with the washing and generally chilling out before I went in to visit her – even though, as it was a long weekend, there would be hardly any buses on the Sunday or Monday so I’d probably need to walk home. As it turned out this was lucky as on Saturday morning, they decided to close to the Care Home to outside visitors. They had an outbreak of a virus – vomiting, diarrhoea (apparently there’s a lot of it about) and the correct procedure as laid done by the health authorities is to put the Home in quarantine for at least 48 hours. They rang me to say that mum had had some sickness but was recovering.

Initially I thought: Great! I can use the time to get myself straight, do a bit of gardening and some of the other things I never get around to.

After a couple of days, I hadn’t heard from the Home so I rang back. They said they expected to be open by the end of the week. And that mum wasn’t too bad, just sitting in her room. All the residents were confined to their rooms. A year or so ago mum would have found this difficult but now she’s so away with the fairies I thought she’d be ok.

I used my time off well. I finished a short story I’ve been trying to write for months and I submitted it to a competition on the very last day for entries. I didn’t do this because I expect to win – although I do like my story – but because it meant I was doing something for myself, which felt good. However, as I’d still not heard from the Care Home, at the end of the week I rang them again.

They said they were still off limits, as they had to give the home a proper clean to ensure no trace of the virus remained. They also said the Doctor had been in to see mum that morning as she wasn’t too good. The Doc said she’d been drained by having the virus. They told me she was lying on her bed, not eating much (which is unusual for her!) and dopey. So, I wanted to go in and see her. I have been caring for her, watching over her and keeping her company through so many crises over the last few years. Indeed, over the last ten years my life has been completely disrupted by demands that I drop everything and rush to a bedside etc not only for mum but before that, for my father. So, it did seem strange being forbidden to visit.

However, we all agreed – mum was capable of perking up. She’s already amazed everybody by recovering from what seemed like a terminal state three times in the last six months! But how many more times will she be able to do that?

As I was writing this post, I had a call from the Care Home. They were reopening the next day. However, they said if I wanted to go in that afternoon, I could. It was clear that they expected me to go in. And I understood from their coded references that mum had taken a turn for the worst. It seems that yesterday, she’d another collapse and she’s not really expected to recover. The medic came while I was there. I know home from the local surgery. He warned me that mum has reached the end of her life: it could be weeks – but it could also be days. Of course, she could rally and surprise us all yet again. But somehow, I don’t think that’s going to happen this time.

 

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.