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.

Advertisements

I am overtaken by events

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

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

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

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

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

Mum loses a tooth

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

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

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

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

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

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

We survive Granddaughter’s wedding

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

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

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

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

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

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

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

My niece is getting married

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

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

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

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

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

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

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

I lose my voice

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

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

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

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

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

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

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

I have a respite from the TV.

Last week, we both had a respite break. Mum went to a residential home where she has stayed before. I spent three nights at the Chalice Well retreat house in Glastonbury. I like to go there once a year, if I can. It allows me to process stuff that I can never fully process while daily life is going on. I can let my mind and my spirit enter those deep places where my true thoughts lie.

As always, Mum started to get anxious about going away. In fact, it was as stressful preparing her to go away for 4 nights as to go away for a couple of weeks! The morning we were due to leave, she got herself in a terrible state. I had to tend to her, clean up mess, change sheets. With a sinking heart, I rang up and cancelled my taxi to the station. But I had a sneaking suspicion it was all a case of nerves and indeed, she eventually settled down. Just before the paid carer was due to arrive, I ordered a second cab and tiptoed away.

By now I was running late. I had to get there by 5pm or there would be difficulties getting the key. The journey by public transport took six hours and at one point, my train was held up and I began to panic. I made it in time but I was very tired – and before I could rest, I had to walk down to the shops and buy something to eat. That night, I felt ghastly, couldn’t sleep – I decided I must be detoxing. The next morning, the first thing that came into my mind was: the television is doing my head in!!!

I don’t mind cleaning up blood and shit, I don’t mind the endless washing when mum’s wet the bed. I don’t like doing it, but I understand these are distressing episodes for mum – and part of the reason I’m living here. The interminable washing/shopping/cooking etc bore me, but I accept it’s an inevitable part of caring for someone who can’t take care of themselves. Her memory loss has been difficult to deal with, but this online course on dementia is helping me to cope. However, when I do get time to myself, when I’m not on deck as it were, that time is being contaminated by the brain-flattening, intuition-crushing effects of the continual blaring TV.

I didn’t own a TV before I came here. I did sometimes watch programmes on my computer but, as a rule, I prefer to listen to the radio, or music. Mum has the television on for several hours every day. She has the volume turned up so loud I can hear it even if I’m in another room. It’s a small house, and it’s impossible to get away from the noise. What’s doubly annoying, is that she often falls asleep in front of it. So I can spend an hour vainly trying to blank out the TV so I can read – and then discover mum’s not even been watching the programme! I have got headphones, but sometimes, I don’t want to listen to music or the radio – I just want silence!

There’s no hope of weaning mum away from something that has been her life-line for years so, the only answer would be to close the door of my room. But I felt that would be a cold, unfriendly act which would make mum feel abandoned. However, I’ve now reassessed the situation. Since I got back, I have been closing my door, even though I know it probably upsets her. And I am feeling so much better! Not only do I get to read, write and go online in peace, I feel like I’ve asserted my right to spend my evenings as I wish.

home 071The wonderful Chalice Well

The wonderful Chalice Well

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!

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!!!