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!

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My brother is no help.

At the moment it takes my brother 2 hours to drive here. He comes down for lunch, does a few odd jobs that I can’t manage – and then goes home again. Mum often complains that he could do more to help, but I’ve always defended him because he was still working full time. I always assumed he’d help me more when he stopped work.

To give him his due, some years ago, he did try to convince mum and dad to move to a retirement village that was closer to him and his children. My parents did not want to consider the idea. Now it seems, it’s just as well they did not.

I knew my brother wanted to move when he retired but I didn’t expect him to do it so soon. But before his last day at work, he’d sold his house and bought a new one – this time nearly 3 ½ hours drive away. When I said I thought he’d have put off moving so he could help me more with mum, he laughed. Now he’s not working, he says he’ll 070.jpgcome and stay overnight – so he can do more jobs. My private feeling is that pigs might fly.

To justify himself, he points out that our parents never did much to help their own parents. So why should he put himself out looking after them?  However, none of the old people coped on their own. Mum’s parents were much older and they died when we were still children. But my mother’s older sister lived with my Gran and looked after her. My dad’s father was still alive when my parents retired and moved down here. Mum and dad would occasionally go up to London to see him for the day. But granddad was looked after on a daily basis by my dad’s younger brother and his wife who lived round the corner.

So the truth is, some other poor sap did the hard work of looking after mum and dad’s parents. Now my brother is using our parents’ behaviour to justify his own lack of concern. And why shouldn’t he? Some other poor sap is looking after his mother, after all.

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On a positive note: Some plants in the garden have thrived after the intense weeding! This bush has never looked so magnificent!

Mum doesn’t know who’s running the country.

One of the basic questions in the test for dementia is whether you know the name of the prime minister. But at the moment I think mum can be forgiven for not knowing who’s in charge. Like many people in UK we’ve been in shock since the results of the referendum to leave the European Union were announced. In fact, the situation is so momentous I really have to blog about it.

Both mum and I voted to remain in Europe. As we live in an area with a high proportion of Leave voters I know for a fact that many people thought leaving the EU would magically improve aspects of their lives which had nothing to do with Europe at all. Of course, some people will have voted Leave after serious thought. I hope for all our sakes that their assessment of the situation may prove correct – but it’s not looking that way at the moment.

It’s become clear that David Cameron, who’s just resigned as Prime Minister, didn’t expect to lose the referendum – and that Boris Johnson, his rival in the Leave campaign, didn’t expect to win. It gets better. There’s no strategy in place for leaving the EU; no one even knows who’s going to be on the negotiating team. This huge event has happened and the people who should be dealing with it seem to be in as much shock as the rest of us.  The whole thing was to do with internal politics of the ruling elite and now the rest of us have to pay the price.

The win, which was by a margin of less than 2%, has revealed a huge fault line running through UK society. People say we must pull together, but I think it’s important to acknowledge that it was such a close result. Many people have remarked they’ve heard better and more sensible debates about the issues involved in the last few days than in all the weeks leading up to the referendum, which was marred by venial and spiteful lies.

I think one reason Leave won was that they seized control of the discourse. And they should not be allowed to do that again. Already, one of the oft repeated slogans is that this has been a victory for ‘ordinary decent people’ – as if the 16 million plus people who voted Remain were not decent, were not ordinary. As if there are 16 million bankers and industrialists opposed to those decent people who voted Leave. I do find this personally offensive.

However, it’s too late now. What should never have happened has happened and we have to live with the consequences. Those of us who wanted to be Europeans can be so no longer. But when mum says she doesn’t know who’s running the country, I can assure her: no one else knows either!

 

 

I have existential nausea

It’s three weeks since I got back from my respite break – and for most of that time I’ve been trying to write a blog post but haven’t been able to complete one. I’ve been sunk into a slough of despond, I only want to sit around and read the paper. Thank god I had planned a few meetings with friends and they helped to lift me out of the depression.

I had a very nice time away: too nice, actually. I paid a visit to the village where I lived when I was a student; then drove up to Ely in Cambridgeshire with some old friends from Sydney. I’d never been there and it is quite lovely, very historic. After that I spent a few days with friends in London. Finally, I had a couple of days back here on my own, mainly clearing out mum’s bedroom – a task I can’t complete while she’s here.

The weekend I spent by myself made me realise just how much time and energy it takes to look after mum. I could get up when I wanted, I didn’t have to fit around mum’s timetable and the carer’s schedule. I could go to bed when I like, I didn’t have to wait until I could get mum settled.

And in between my chores, I could actually relax – read or watch a DVD. When she’s here, I can’t relax. I might think I’ve got a chance to get on with some project of my own – but then she calls me: she’s having a disaster, she’s spilt tea down herself and needs to be changed; she’s wet her trousers and needs to be changed; she’s constipated, stuck on the loo and needs to be talked to…. Then there’s the continual barrage of repetitive questions, which she just shouts out, no matter if I’m far away, in the middle of cooking, in the garden – or indeed in the loo! And there’s the sudden taking offence at some innocent remark I’ve made. All of this drains my energy.

Also, while I was alone, I could listen to the radio. This made me feel I was in touch with the world, gaining information and learning something new while I worked away. I can’t listen to the radio when she’s here because it annoys her – ‘too much talking’ – (although I have to spend hours trying to block out the noise of the TV which she always has on very loudly.)

Anyway, when she got home, I couldn’t get back into the swing of things. I resented the situation and felt like a drudge, an unpaid skivvy who is working my arse off while she just has everything to her advantage and there’s nothing to mine. I saw clearly how limiting this life is for me and how precious my time is, as I’m not so young anymore either. How many healthy years do I have left myself? I seriously considered the alternatives. Could I put mum permanently into the care home? Eventually the answer came back:  Not Yet.

I don’t know how much longer I will be able to stand it. I said originally I could do it for 2 years, or 3 at the most, so in October I will reassess the situation. And who knows how things will be by then.

In the words of Samuel Beckett: I can’t go on, I’ll go on. For now.

 

I am overwhelmed by weeds.

There are triffids in the garden. Well, not exactly. There are no homicidal plants that will kill and eat you but there is an invasive weed. And it has made me feel completely overwhelmed.

A few years ago my mother’s neighbours complained about a weed in her garden that could spread into theirs. At that point, she did have a gardener but he moved on, and being an old lady on her own, mum was unable to find another. Perhaps if the neighbours had helped her then, things might not have got to this point. They are on the whole excellent neighbours but they did not help mum find a new gardener.

She does have a guy who mows the lawn. Last summer I asked him to help me with garden. It isn’t that big but it had become an impenetrable jungle and it was beyond me to tame it. He worked really hard and cleared it back; he also did some weeding. He told me, this weed is very difficult to eradicate, it’ll require quite a bit of work and could take several years. He gave me a name: Ground Elder.

Trouble is I’m not a gardener. And I had so much else on my mind. So I didn’t really take him seriously. Then the other week I noticed spring was here and I also noticed the weed was indeed beginning to creep under the fence into the neighbours’ garden. So I thought it might be time to sort it out. I googled it and oh, I did not like what I read. Actually, I despaired.

It really is difficult to eradicate, it will take hours of hand weeding and digging possibly over several seasons. But I haven’t got a lot of spare time and energy for hand weeding, and I haven’t got several seasons – or at least, I don’t want to find myself trapped here after mum has passed on.

I felt crushed and completely at a loss. I didn’t sleep for one whole night feeling utterly powerless against this plant that threatened to take over the garden and exhaust me in the process. However, on the advice of a friend who gardens, I spoke to the gardener.  Yesterday he spent several hours here and really attacked the growth. Now, hopefully, he will help me to keep on battering at it and digging it out and eventually it will be eradicated. I hope it will work – because for me it really felt like the last straw. Or the last weed….

Mum loses control

Mum’s always been a control freak. She hasn’t been able to walk properly for many years and when my dad was alive she would sit in her chair and order him around. My mental imagine of her was like a spider, sitting in the centre of her web, controlling everything through the force of her will.

When I came to live here, I was determined not to be swamped and bullied – which did mean I had to use a lot of energy keeping up my boundaries. But recently, mum’s undergone a change; such a strange and uncharacteristic change that it’s taken me a while to fully grasp what’s going on. She’s started asking me “what do you want me to do?” And this for the simplest of tasks. Even, “Do you want me to flush the loo?” Answer: “Yes, please!”

She’s forgetting how to do things that she could do even a few weeks ago. Initially I had to remember to remind her (which was a bit of a headache because I wouldn’t always remember myself). But now I’ve integrated those tasks into my daily routine. It does add to my jobs but in some ways it easier because I don’t need to worry that I’ll hurt her feelings by ordering her around or make her feel less empowered by telling her what to do.

People tell me old people become more ‘biddable’. I have to say my dad never did. He continued to be a wheeler-dealer until the very end: Telling me there was a chap who worked in the hospital who was going to help him ‘get out’. Wink, wink. He was caught several times trying to make a break for it. I know he made it difficult for the staff, but he was always a rufty-tufty working man and I was proud that he clung onto a sense of autonomy, even though he had dementia.

But ‘biddable’ is exactly the word that springs to mind when describing this change in mum. Of course she can still have her moments, flaring up over some innocuous remark that I’ve made or getting upset because her memory loss means she’s misunderstood a situation. But the rest of the time, it’s quite relaxing. I just tell her, do this and don’t do that. It’s an interesting change in dynamics. To approach the centre of the spider’s web and find this shrivelled up old lady. The flipside, of course, is that she’s becoming completely dependent on me!

I walk like an Egyptian

I had a marvellous holiday in Egypt. So many people warned me not to go, said it would be dangerous, but I never felt afraid or threatened at any time. I felt for the local people who are struggling financially because tourism’s been so severely affected – But because there are so few tourists, the temples and sites weren’t swamped with huge gangs of people and there were hardly any other ships to spoil our peaceful passage down the Nile. Not only were there few cruise ships, the one I was on was practically empty. On the way down to Aswan there were about 20 passengers – half Egyptian, half British. On the way back there was only the nine – yes, nine – people who were on my tour. I was so lucky they didn’t cancel it.

The Pyramids, the Sphinx, the Egyptian Museum in Cairo. the Valley of the Kings, the temple of Isis at Philae, the Aswan Dam, Luxor, Karnak, Abu Simbil, the experience of the Nile itself, watching life on the river banks that can’t have changed much for centuries: it was all more fantastic then I had imagined it would be. But I’d also imagined I’d spend my evenings alone in my cabin reading and writing in my journal – but I was wrong!

All kinds of activities were arranged for us: an Egyptian night, when we all got dressed up in Ghelabayas and looked quite unlike Egyptians; a Nubian night – which was a lot of laughs; a visit from a belly dancer. Because there was so few of us, I couldn’t take my usual back seat but had to be a good sport and participate in party games, or attempt to do local dances (!). In short, I was forced to have fun.  Before the trip, I had wondered who I would sit with during meals. I’d thought ‘there’s always someone to pal up with or who will invite me to join them’ – but as we were so few, we all sat together round one large table. I felt integrated into one happy group. Dropped my carer’s persona all together.

At home I keep my comments simple, if not monosyllabic because I often have to repeat them over and over again. I’d forgotten I can be cheerful, chatty, witty, cultured – even opinionated! So on some level, the trip has helped to give me back to myself.

But what’s even better is that mum also really enjoyed her respite break. Since we got back she’s been talking about it non-stop. ‘In the home’ this, ‘in the home’ that. She asked me – why didn’t you leave me there longer? As she usually complains that I’ve left her there too long I was pleasantly surprised. I asked her – would you like to go there more often, not just when I go away?  And the upshot is, she’s going back to spend a few days there at the end of the month which means I can go to London for a couple of nights to spend time with friends. Fingers crossed this continues…

 

Year of the Monkey!

Mum was born in the Chinese Year of the Monkey, which makes her a very venerable Monkey indeed. Checking out her horoscope for the coming year I saw there will be quite a few obstacles in her path. The trick, apparently, will be to deal with these obstacles with patience and optimism. What one must not do is attack them with impatient negativity.

Unfortunately, even at her advanced age, mum has never really learnt how to approach issues with patience and optimism! She’s a half-empty rather than a half-full sort of person. And to switch zoological metaphors, I’m afraid a leopard can’t change its spots – which points to a rather trying year ahead for me if mum gets frustrated and cross.

On a more positive note, the Year of the Monkey is going to be a good year for me – as long as I take advantage of the opportunities that will arrive. Ok, I look forward to doing that. But – I must look after my health. The best way to rest, says the horoscope, is to maintain a good work/life balance. This could be a bit tricky. As any carer knows this is not like a normal job. It can be 24/7, there are no days off, no going home and leaving your work behind. Mum needs a lot more care than she did a year ago, both physically (incontinence etc) and mentally. So I must make sure my boundaries are firmly set, and I have time for myself.

In preparation for this, we’re about to have a respite break. Mum will go to the normal care home and I, fingers crossed, am going to visit the Pyramids and spend a week cruising on the Nile. This is my reward for the hard work of the last 18 months – and will hopefully set me up for the coming year!!

Abundance and Good Health to everyone.

We discuss euthanasia

Every morning when I take mum her cup of tea I move her pillows so she can sit up. I always ask ‘do you want to sit up?’ This morning she said, ‘no, I want to die.’

We discussed the potential ramifications of this. ‘I could just close the door and leave you lying here, but after a while you’d get bored, you’d get hungry, you’d need clean pads. I think in the end you’d get up and carry on as normal.’ She agreed just staying in bed till she died was not a good option.

Then I remembered the murder mystery we’d seen the evening before. The victim had been a chap in bad health; everyone had assumed his death was of natural causes – until they discovered he’d been smothered with a pillow! I made smothering movements with my hands ‘I could get a pillow like on TV last night! No one would question it; everyone would think it was natural causes.’

Mum nodded. I swear she looked a little hopeful. ‘No one would query it,’ she agreed.

‘But,’ I continued, ‘in the end the TV murderer was brought to justice. What if they did discover I had done away with you? Then I’d be sent to prison. That would be horrid. Sorry mum, I don’t think it’s worth the risk.’

So mum hauled herself up against the pillows, drank her cup of tea and we heard no more about it.

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BTW: I have my New Fence!! And I also have my New Laptop. Now just have to get used to Windows 10.

It never rains but it pours

In December, I applied to the Carers Well-Being Fund for a grant to help to buy a new laptop. The one I’m using has given me sterling service but it’s getting very old. At New Year I learned they’ve granted me this money and only ask for me to get back to them as soon as possible with proof I’ve made the purchase. But the crazy thing is – I haven’t had a chance! It’s mad I know but it’s going to end up being at least a fortnight before I can apply myself properly to what will be a really important purchase which I can’t just rush into. As they say, it never rains but it pours….. and it’s literally been pouring without cease for days.

Normally we lead a very quiet life, the calendar more or less blank. But since New Year it’s been a different matter. We’ve been spared the dreadful flooding that some people have suffered but with the torrential rain, hail and gale force winds, the back fence has practically collapsed. The one we have is old, but I was hoping we wouldn’t need to replace it just yet. To my horror, I discovered it keeling over, large chunks out of it. I found every piece of wood I could to prop it up, hammering them in to the ground with a mallet. It felt quite good actually: action woman!

The house backs onto a road, so we need a proper, strong fence without delay. But I had no idea where to start. I began to research the merits of ‘waney’ vs. ‘feather edge’ panels; cement posts vs. wooden posts. Neighbours recommended fencing firms; so did the hairdresser. I set up appointments so they could quote. Then I had to decide who to choose. Now I’m hoping I made the right choice!!

In the middle of all this, the Falls Prevention Team came to see mum. They came back and put up several new grab rails to help stop mum losing her balance and falling over. The week after they’ll return to check on how it’s going. That’s three days of appointments.

On Monday, I took mum to the doctor and today we went to the hospital because we’ve finally got the pre-op appointment for the minor surgery they’ve suggested for her. I have a whole list of necessary errands to run and I arranged weeks ago to go to London overnight next week, which will take up two days there and back. This is not to mention arranging a time for the fence to be fixed.

Fingers crossed, I’ll have time to buy my new laptop in another week or so!!

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