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.

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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

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 institutionalised

Mum and I have both had a respite break. I visited friends, met up with pals from Australia and Canada and old friends from uni. I ate out, saw exhibitions, went to museums, watched movies. I packed in everything I could and had a great time. But I also got a cold and a stomach bug – possibly because I’m a bit run down – and when I got back here I was very tired.

For mum it was quite the opposite! She’d also enjoyed her break. She’d stayed in a residential home where the people are friendly and nice. They like her and she likes them. The change did her the world of good and she came home lively and energised from having some company. But she’d also got institutionalised which meant she expected me to work even harder than normal. So, for a while, we’ve been at sixes and sevens.

For instance: she’s still able to manage her own medication. She has three eggcups, one for the breakfast pills, one for lunch, one for dinner – and she sorts out the right pills into the different cups. All I have to do is help her get the pills out of their packaging, which is difficult for someone with bent-up arthritic fingers.

But at the home, they dished out the medication, and now mum has forgotten how to do her pills. She can’t remember which ones to take, and then she forgets if she’s taken them. In fact, if I don’t watch her with hawk eyes, she’s likely to take a double dose – and with the amount of painkillers she takes, this would not be a good idea.

She’s not only got out of the habit of doing a few small chores she can still do for herself, she’s also lost confidence in her own judgement. Every five minutes she asks me: Shall I change my shoes? Shall I have a drink? Shall I take the pills? What TV channels shall I watch? To which I reply, variously: I don’t know/ It doesn’t matter/ No, mum, don’t do it /Mum, I told you not to do it / Oh, do what you like.

I know mum’s condition will never improve but I don’t want to hasten the proceedings by letting her become lazy minded. So I’ve been trying hard to get her back to doing stuff for herself. And things are improving, slowly.

However, there’s one issue on which I simply can’t compete. At the care home, they have a proper chef. And it seems my meals just don’t compare with his! Mum keeps telling me, ‘this meal is quite nice, dear, but it’s not as good as what they served me at the home……’ All I can do is grit my teeth and nod. ‘Sorry mum, but this is the best I can do.’

I am defeated by dementia!

People tell me they don’t know how I cope. I say, ‘I don’t. Sometimes I throw up my hands and scream, ‘I am defeated by dementia!’

Most of the time you can still talk to mum and hold a conversation. It’s true you can have this same conversation over and over again but still, she is capable of having opinions and grasping logical ideas. She is for example very interested in the upcoming elections.

But then, suddenly you find yourself in the midst of a complete communication breakdown. It’s like there are these little whirlpools in mum’s mind where narrative logic breaks down. The first times it happened I got incredibly frustrated, ‘So thoughtless!’ I ranted to myself. ‘So selfish!’

The second time, it happened I got so angry I thought I was going to give myself a stroke, I swear I felt something pop in my brain. ‘So thoughtless! So selfish! Can’t she see this is stressing me out? Can’t she see that I’m really tired? Doesn’t she care?’ I tried to reason with her and it was like talking to a brick wall.

But I’ve realised, there’s absolutely no point in getting my knickers in a twist. Dementia’s like being on a boat that’s sailing peacefully down the river, going with the flow as it were. Then for no apparent reason, the boat ceases to go forward. Instead it’s caught in a whirlpool, going round and round and round. And it’s like that with mum, she gets these little whirlpools in her brain and she just can’t think beyond them.

For my own sanity and well-being, I have to learn to recognise when we hit one and learn to walk away without losing my cool. Because it’s quite clear, these whirlpools are only going to increase.

Mum sees a Golden Squirrel

Last week Mum saw a golden squirrel in the garden. She said it looked beautiful, gambolling around on the lawn. She says she called me to come and see but I didn’t hear her. A pity, because I would have liked to have seen this fabulous creature. I did wonder if she had been seeing things but there are often squirrels in the garden. I thought perhaps it had been a genetic mutation and reserved my judgement. ‘If it’s living around here,’ I said, ‘I expect we’ll see it again.’

The next day she cried out, ‘There’s a donkey in the garden!’ This time I was there to see that the garden was empty, but I knew there was no donkey. Of course there wasn’t! However mum saw it walk through the fence on one side, across the garden and through the fence on the other side.

Later she said ‘it wasn’t a donkey but a Shetland pony, golden with black, brown and white markings. It was lovely.’ That evening there happened to be a Shetland pony on TV. Mum told me ‘that one is the same as the creature I saw in the garden, except the one I saw had more markings.’ She described the markings to me quite clearly. This is someone who has no short term memory, but she can clearly see this horse in her mind’s eye.

Hallucinations can be a symptom of urine infections and mum is just recovering from one. When the District Nurse came she remarked on how much brighter mum seemed. I agreed but I had to mention that mum had seen two golden creatures in the garden. The nurse ran some more tests but so far everything seems clear. And in a way I’m pleased because seeing these two creatures has made mum feel quite blissful. It’s as if she’s had an epiphany.

When she speaks of the two sightings her face glows. ‘They were lovely. The little horse, it came from there, it went there, it was beautiful.’ I said, ‘Mum you do know it wasn’t real, don’t you?’ ‘What do you mean? It’s real to me; I can see it in my mind.’ ‘Okay, what I mean is – you do know there wasn’t really a pony in the garden?’

Mum assures me that she does know, but it’s quite clear that, on some level, she feels that it was real. In fact these hallucinations/ waking dreams/ visions/ whatever/ seem to have been the best things that have happened to her for a long time. They have made her feel quite blessed.