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!

Mum turns 95

This week was Mum’s 95 birthday. Two days before, she met her great-granddaughter for the first time. This has lifted her spirits no end.

She’s been saying recently that she just wants to see The Baby and then she wants to ‘go’. Indeed, one morning she was so blue, she said she didn’t even care about  seeing baby! She asked me several times if dad died at Xmas. He died just after New Year, but this is the first time she’s brought the subject up in the five years since his death. She wondered if she would die at the same time of year as he had?

My grandmother had a stroke on the anniversary of my grandfather’s death and died shortly afterwards. So I began to be a bit concerned. But since mum’s seen The Baby, there’s been no more of such talk.

The birthday celebrations went on for several days, starting with a visit from my cousins bearing gifts from their side of the family. Since then, there’s been a steady stream of visitors: my brother, his kids and their partners – and The Baby of course; neighbours etc. At the last count, mum had received 19 birthday cards. She even got greetings via Face Book. All this has improved her mood immensely.

Mum has always been a gregarious person who enjoys chatting and laughing. I can’t really provide that sort of companionship. I could do, if there were two of me: one to do all the work and one to sit and chat and watch tv. The carers, who are here for an hour, the cleaners, the hair dresser, all cheer her up briefly, but mainly, she misses my father.

She told me, ‘I just want to see my Frank. Do you think he will find me when I die?’ I don’t know the answer to that one. I imagined the afterlife like a very crowded wartime railway station with refugees pouring off packed trains. I said ‘Well, thousands and thousands of people die every day. It might not be so easy for him to find you.’ She smiled and shook her head. ‘You don’t know my Frank. If there’s a way, he’ll find it.’

Well, of course, I hope she’s right. But for now, The Baby seems to have provided some sort of compensation for being forced to stay in this boring world. She has the child’s photo by her chair and speaks to it a lot. And she does seem to be much happier. I guess she really was, quite simply, depressed.

 

mum&alana

A year has gone by.

A year has gone by since I started this blog. First I want to say a huge thank you to everyone who reads it, and who have left comments. I can’t tell you how much that means to me. There are times when I feel very cut off and isolated. During those times it’s great to know that what I’m writing is being read. I’m like a character marooned in outer space who suddenly gets a response to the signals she’s been sending off into the cosmos in the hope that someone somewhere might pick them up.

Having said that, I don’t think I made a mistake by moving in with mum. I miss my life in London, of course I do. But it’s also clear that her condition has deteriorated in the last twelve months – which is good because, if she’d stayed the same, I’d be wondering why I had bothered to give up my freedom! Whereas these days it’s obvious she can no longer manage on her own.

It’s been much harder work than I expected. I expected I’d help her with things she was struggling with, owing to her arthritis. I didn’t anticipate she would just put her feet up and expect to be waited on hand and foot! Also, I did not realise how confused she was mentally. I thought she had difficulties with the modern world, but I really had no idea of the true extent of it. Nor did I know anything about dementia. I know quite a bit more now!

I thought I’d be bored, but I battle to have time to myself. I never have a lie-in or an early night. Even when I was sick, I never got that luxury. It’s also annoying that I can’t control the use of my time. Last night, I thought – ‘I’ve got an hour, I’ll get the blog post finished’ – at which point there was a cry of distress from the bathroom. Mum was having one of her incidents. To sort it out and clear it up, took an hour. And by then, I just wanted to go to bed.

But the hardest thing is that I’m never alone in the house. I used to live by myself and I just wish I could have a day, even a few hours, when I didn’t have to worry about someone else’s presence! At night, if I can’t sleep, I’m always aware that I could wake mum up and indeed, when I go to sleep, I’m aware she could call me in the middle of the night, and I’d be duty bound to get up and tend to her! Of course, I’m by myself when I go out, but that’s not like staying at home and relaxing on the couch. And when I leave the house it’s normally because I have chores. A few friends have nobly made their way down to Chichester. We’ve generally met up for lunch which has been a wonderful chance to have some decent conversation – and also for me to get to know the city because of course, I’ve no prior connection to the place at all.

And now winter is coming – a time when we in the northern hemisphere spend a lot of time inside, on top of one another. I’ll admit the idea of spending a second winter here, does make me feel pretty gloomy. But I have strategies in place now to protect my boundaries. I have this blog, and most days I try to spend a couple of hours doing ‘creativity’ for my mental health – that’s to say, I’m writing a fantasy novel which is marvellous escapism. And I enjoyed the spinning workshop I did on my birthday. I even produced a small amount of wool – let’s see if that will lead me somewhere new and unknown during the next twelve months.

I lose my voice

I’ve been ill. Not super ill, just the sort of under-the-weather type virus when you want to curl up in your pyjamas, read magazines and watch DVDs. I wanted to sleep in and go to bed early. But I couldn’t do that, could I? I had to look after mum.

At first I thought I was just getting a cold perhaps because of the change of season. Then I started coughing until, finally, I lost my voice. This final symptom was actually quite restful, as I couldn’t keep answering mum’s repeated questions. I just smiled at her and shrugged.

There’s no doubt I was run down. The last few weeks have been hard work. Mum’s condition has deteriorated quite a bit. I’ve now developed strategies for dealing with various new issues – like complete nocturnal incontinence! – but it’s all put a lot more pressure on me. Normally when I get a cold or a virus I take it as a sign I need to rest, to stop, to recuperate – but I couldn’t do any of those things. And these last few days have made me realise how difficult it would be, if I did get properly sick.

I’ve recently registered for a scheme whereby, should anything happen to me, mum will receive 48 hours emergency care. Someone will come in and do the chores, get her meals etc but only if it’s an emergency. Hopefully we’ll never need to use it, but it won’t kick in if I just feel like taking to my bed. And although I managed to keep us fed and the washing done, I was struggling. Mum ran out of one of her medications, while photos of new great-granddaughter arrived in an email and were overlooked – just because I wasn’t on top of things.

During this time, Mum never once made an effort make herself a cup of tea or do anything else to help me nor did she expect any less help from me! She did repeatedly ask, in what I found an annoyingly concerned sort of voice, ‘are you taking any medication?’ I wanted to shout at her, ‘Of course I am! That’s how I’m keeping going! But what I really need is to lie down and rest!’ As I couldn’t say that, I just muttered things like, ‘yeah’, ‘Sure’, ‘Mmm’ or even ‘Leave me alone!’

I really hope I don’t get sick again because there’s no easy way to recover. It was my birthday this week, and I managed to have a fun morning learning how to spin (!) at a local museum of rural life – but I spent the afternoon asleep. I couldn’t face writing, emailing – or blogging – because once I’d done what I had to do, I really did not feel like doing anything else. So I feel like I lost my voice in more ways than one.

Fingers crossed I can stay healthy through the coming winter. I’m stocking up on the Vitamin C…

I aim for high cognitive reserve!

A friend suggested I enrol on a free online course called understanding dementia, run by the University of Tasmania. http://www.utas.edu.au/wicking/wca/mooc

So far, I have completed two out of the total nine weeks and done the basic introductory sessions – and if knowledge really is power, then I’m definitely feeling more powerful! That’s to say, I’m finding it much easier to deal with mum’s lack of short term memory now I understand about the hippocampus – the section of the brain concerned with memory formation. It helps people order things that happen during the day and contextualise events.

So now, when mum asks me a question for the umpteenth time, I visualise her hippocampus malfunctioning. This intellectual understanding has helped me to keep my cool. I understand there is a physiological reason why she can’t remember what I’ve been telling her for several hours. I understand she really can’t hold a thought because a certain part of her brain is collapsing (well there’s probably a more scientific way of putting it).

When I had to state my reasons for doing the course I wrote: my father died of vascular dementia, my mother is increasingly confused – and I want to be able to recognise the warning signs for myself! I haven’t yet got to that part of the course, but I already know I must develop a ‘high cognitive reserve’. As I understand it, this means creating new pathways for information to flow between neurons, because the more alternatives you have, the greater the chance the brain can find other ways to pass information between cells if it becomes damaged by dementia.

Neurons in the brain build connections, adapt and develop as we learn new skills. Things like learning languages – or doing a course of study – are ways of creating a cognitive reserve. With this in mind, I decided to start speaking to mum in French – just simple phrases such as ‘I’m on my way’ or ‘do you want a cup of tea?’. She studied French when she was at school, in the early 1930’s, and amazingly she does still remember some of it and quite likes that she can work out what I’m saying. And it’s actually making those boring daily task more fun for me too.

A la prochaine!

Mum gets a kiss from dad.

Most mornings it’s hard to wake mum up. Sometimes when I go into her room, I think she may have died. Then I notice a fluttering of the eyelids, a bit of a gasp and she’s struggling back across the border lands to consciousness. Often, you get the impression she doesn’t like what she sees.

But the other morning it was different, she was alert and happy. She told me, in the night, dad had leant over the bed and given her a kiss. Dad’s been dead for 4 ½ years and in that time mum’s been disappointed that she hasn’t felt his presence around her. Now, finally he had come. He had leaned across and given her a kiss and told her he was worried about something. Worried about what? She did not know.

She often asks me, do you think I’ll see your father again? Well, I tell her, that’s a question no one can answer. But I thought, on odds, there was a 50/50 chance. Either there’s nothing and our consciousness dissolves, or we remain conscious but in a new dimension – in which case, I told her, it was possible they would find each other. She feels sure dad will meet her. ‘If there’s a way, he’ll find it.’

Perhaps her hope to see dad is a way through a dark place. Mum has a lot of pain. She cries a lot and says she’s had enough and wants to die. Still, it must be scary, stepping into that unknown beyond. Perhaps the idea that dad is waiting for her gives her strength to face it.

Perhaps he came to tell her he would be waiting to give her a hand across.

I miss the bus and burst into tears

Last Sunday, my brother came with his family. It was lovely to see them, but not exactly relaxing for me. Monday was a difficult day. I had to repeat over and over again, ‘I am a mermaid, I am a mermaid’ and I managed to keep my cool. Tuesday, the cleaners were due. I got up early, did my chores, put on a load of washing from mum’s ‘accidents’, cleaned up the house so the cleaners could clean (I know, I know), got mum up and got myself ready – as I always go out when the cleaners come.

I had things to do in the nearest proper town and I wanted to get the 11 o’clock bus at the very latest. The bus leaves the terminus at 11 and if I get out of the house on time, I can catch it as it comes past my local bus stop. But I could not leave the house. The agency carer, who was still there, wanted a word. Ok. The cleaner, who had just arrived, wanted a word. Ok. Then mum decided she needed my movements written down on her memory whiteboard.

I finally escaped and raced to the bus stop. The bus was already there! There’s no pavement, so I had to get across the road and approach the driver from his blindside. When I was 10 metres away, he drove off. To my surprise, I burst into tears. But really, tears. Like a kid. Boo hoo, boo hoo.

I suppose it was the last straw. I’d tried so hard to accommodate everyone else. The only thing I’d asked in return was to catch that bus. Now I’d missed it and was possibly faced with a half hour wait. (The buses are supposed to run every 15 minutes, but you often have to wait much longer and two will come along together.) My equilibrium deserted me. ‘Now I will h-have to wait h-half an hour, I kn-know I will.’ Boo hoo, boo hoo. ‘If the c-carer had come earlier. If the c-cleaner hadn’t spoken to me.’ Then! ‘If mum hadn’t made me write down that stuff, stuff she knew perfectly well.’ This set off a great gale of sobbing.

What was weird was, I really couldn’t stop. There was no reason to, as I was quite alone. I stood at the bus stop and sobbed, and there was something quite relaxing in the crying, like a kind of gentle orgasm.

After 15 minutes, a lady appeared so I had to pull myself together. And then, unbelievable joy! The next bus arrived on time. I sat upstairs, put Loreena McKennitt on my headphones and by the time we got into Chichester I was back to my normal philosophical self.

Strangely enough, since then, I’ve felt more positive and optimistic. Perhaps I really did just need to have a good cry!!!

I embrace my inner bag lady.

The carers get my mother up and dressed. By the time she sits in her chair, her hair’s combed and her cardigan neatly buttoned. But I’m often still in my pyjamas. I don’t sleep in them: I put them on in the morning because they’re comfortable and easy to wash. I don’t want to spoil my nice clothes crawling around wiping up mess, cooking, cleaning etc.

Besides, I can’t be bothered; no one’s going to see me. A couple of times there’s been an unexpected caller and then it’s been embarrassing, but most of the time who’s to know if I’m still wearing my PJs and some old t-shirt at 5pm. I’ve checked out the neighbours. They wear tracksuits, comfy slippers and polyester slacks. None of these are my bag.

A few months before I moved in with mum, I was talking to an old school friend about how to look stylish at 60. We wanted to wear what we’ve always worn and we also wanted to keep our hair long, but this made us look a bit like ageing rock chicks. Recently I rang my friend to see how she was. She said she’d had flu and was feeling like a cross between a rock chick and a bag lady. After some hesitation I admitted that, these days, I am pretty much a full time bag lady.

When I was young, there was a film called ‘Woman in a Dressing Gown’. The phrase held a rather seedy glamour. The implication was that a woman who didn’t get dressed till the afternoon must have rather dubious morals. ‘Woman in her Pyjamas’ doesn’t have quite the same ring to it. But the idea of just sinking into a sort of lazy slothful abandon is strangely alluring. I mean, I’m hardly a sloth. Full- time caring is not a slothful activity but I do know, not only will I not see anyone at home, it’s very unlikely I’m going to bump into anyone interesting as I trudge to the post office, the chemist, the local supermarket. And then trudge back, lugging a load of shopping, no doubt with a rather harassed expression on my face.

When I lived in the city, I wouldn’t consider leaving the house without lipstick, earrings and perfume. But round here, I think you stand out if you make an attempt at glamour. So, when I go to the local shops, I don’t bother to put on lipstick, I just pull on a pair of jeans and put a coat over an old t-shirt and cardigan. (Of course, during the winter that was okay as a coat can cover a multitude of sins, now it’s spring I’ll have to think again.).

I’ve always said it doesn’t take any more effort to be nicely turned out then to look like a right mess. I still believe that but I’ve ceased to care so much. My inner bag lady – who I realise has always been there lurking in the wings – whispers seductively in my ear. Why bother to make that tiny bit of effort? Who will care? And those blue fluffy slippers are so warm and comfy.

I guess I should just relax and give into it. As long as, if needs be, I can still turn myself into an aging rock chick without too much trouble!2015-03-20 16.30.27

Mum has a fall

When I moved in with mum, it was agreed I could go away every now and then, while she would enter into respite care – but we had not yet found a place where she felt happy to go and stay. Last week, I went to visit a friend for a few days and mum went into a care home. It was recommended by someone we know and trust, so I was confident it would be a good, safe place. When we visited, it seemed comfortable and cosy – that’s what mum looks for, not luxury, or elegant furnishings. The other residents seemed friendly; greeting us not sitting drugged in front of the tele. I was really hopeful. The whole time I was away I kept all my fingers crossed and all my toes. Mum was indeed very comfortable there. She liked the place and the people – and the people liked her. When I phoned her, she sounded cheerful and happy, in no particular rush to go home. But on her last night there, just walking back to her room, she had a heavy fall. It was such a shame. All the benefit of her ‘holiday’ was lost. She’s shaken up; her face is a picture of black and yellow. She has bruises down her side and ribs, and on her feet. She obviously went down with an almighty thump. The miracle was, she didn’t break anything – although the side arm of her glasses had to be repaired. The home took her to A&E, sat with her there for hours. The doctor dressed the wound where she had scraped her face and the District Nurse has been to check on the dressing. They gave me a pamphlet about head injuries, warned against confusion and sleepiness – but that’s normal for mum! The nurse asked was there any nausea or diarrhoea? No. She’s tired, feels achy and under the weather, but the wound should heal in a few days and the effects pass away. The worst thing is, she’s lost her confidence. Apparently, the danger after a fall is, even if there’s no injury, the ‘faller’ will become afraid to move around and their health suffers. I hope, as she begins to feel better, mum will go back to doing things for herself. I hope she won’t associate this cosy, friendly care home with the fall, and will be happy to return there for another stay. I’m also relieved that the fall happened when she was with other people. It looks like she’s been beaten up. I wouldn’t want anyone to think it had been me! Featured image

Talking to strangers

I don’t usually talk to strangers. I think of myself as shy, although I’ve been told I look superior and intimidating.

Anyway, on Saturday, I went to buy a paper and started chatting to the woman in the shop. ‘What are they building over the road? A new supermarket! Goodness! And how will that affect you? Oh dear, that’s terrible.’ On my way home I passed a guy with a cute little dog and I started chatting to him. ‘Oh she’s so pretty! What type of dog is she? What’s her name?’

Is this loneliness? I’m happy in my own company, as they say, and I’m used to living on my own but then I had a social life. Now, I spend most of my time with someone who can’t really have a conversation. Mum and I do have chats, although I know she’ll forget them soon enough. Sometimes, when I’ve been out and seen something interesting, I just can’t stop myself telling her about it, even though I know it will probably make things worse because she won’t understand what I’ve said, and I’ll have to repeat myself and explain it over and over again.

In the same way, I always regret making a casual comment – about a news item, for example: thinking aloud, you might call it. Because mum’s a bit deaf, she doesn’t catch what I’ve said, so she wants to know what it was, but she won’t understand why I’ve said it. And in the meantime, the news item has changed so I have to explain it was the item before last but she’s forgotten what that was; or it’s a drama and I lose the thread of the plot while I tell her why I made some minor, off-the-cuff remark. In the end, it’s simpler to try and say nothing at all.

I’ve been reading that isolation is a big problem among carers. I have the phone and emails to keep in touch with friends, but it is bizarre to be with someone and feel unable to communicate. Perhaps this is how au pairs must feel? They’re not by themselves, but they’re cut off from their companions by lack of language. I’m not by myself, but it feels like it’s more trouble than it’s worth to express my thoughts. And that does make me feel solitary in a way that living alone never did.