I have to learn to breathe underwater

These last few weeks have been difficult. I’ve been feeling like I’m trapped in water below an ice sheet. There’s an air hole above me and if I can reach that hole and breathe for an hour or two a day, then I can plunge back down into the black water and survive. But if I can’t do that, then I might drown. But I began to feel there was a conspiracy of people trying to stop me reaching the air hole.

Agency carers, cleaners, gardeners, neighbours, people have been expecting things of me. ‘Can you just do that?’ said one. ‘Can you just do this?’ asked another. ‘Can you make that phone call?’; ‘Can you make sure mum does X and Y?’. While none of these tasks were particularly onerous in themselves, I experienced them as straws being piled on my back.

Mum usually has a siesta in the afternoons and during that time (even though I’d often also like to take a siesta) I try to do something for myself – reading, writing, anything that makes me feel like I still have some sort of identity. But recently, on a Sunday afternoon when I was settling down to a couple of hours of peace and quiet the phone rang: it was the district nurse. She wanted to come round to talk to me about mum’s incontinence. She showed commendable commitment to her job but I felt like bursting into tears. It really was the last straw.

In my mind, I could hear someone whispering – ‘Just give up. You’ll be happier if you just abdicated from your own life.’ But everything I am fought against the idea of erasing my own identity – even if the battle to maintain my own inner autonomy exhausted me.

And then, mum asked me the same question for the twentieth time and it all seemed so completely absurd that I started to laugh. And I realised: to survive, I need to become a sort of mermaid. Somehow or other, I have to learn to breathe underwater.

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.

A Visit to the Doctors

Mum has not had her medication reviewed for a long time. For some time, I have been trying to get her to go and see the Doctor and discuss the pills she takes. But she’s been digging her heels in. ‘I’m 94. I shouldn’t have to go there. He should come and see me.’ Nothing I said could convince her otherwise.

Then, just before Xmas, the pharmacist said they couldn’t repeat her prescription again without a review by the Doctor. I told mum, ‘Whether you like it or not, we have to make an appointment before the medicines run out – which means as soon as possible after the New Year.’

I took the first appointment available, and arranged for a carer to drive us to the surgery, wait with us and drive us back. In the long run, this is not much more expensive than getting two taxis and a lot less hassle as mum gets bored waiting for a cab to arrive.

Mum grumbled and grumbled over and over. The time was inconvenient, she didn’t know the carer who was coming, she didn’t feel well, she was 94 and she didn’t think she should have to go. I just gritted my teeth and concentrated on getting mum to her appointment

The day came. The carer arrived, it was someone mum knew and liked. We went round to the surgery; the doctor was polite and respectful. We discussed her medication – and the possibility of attending a memory clinic (he wasn’t very encouraging.). We came home.

Mum: ‘I should have asked the Doctor about the problem with my face and my problems at night.’

Me: ‘Why didn’t you? You could have made a list.’

Mum: Why didn’t you remind me?

Me: !!! I didn’t know you wanted to ask the Doctor about those problems. You wasted all that time complaining about having to go to the Doctors. You should have realised it was a chance to sort everything out.

This is exactly what happened with the Xmas cards. It wore me out trying to get her to write them, but when cards started arriving from friends and family, she was really pleased she had sent hers already. And, in the same way, it wore me out to get her to the doctors – now she’s frustrated because she lost her chance to sort out things she needed to sort out.

She’s always been a glass half-empty sort of person. But it’s sad when someone is so old and  could enjoy the life that’s left to her so much more, if she just tried to have a more positive attitude. Yet, after all these years she doesn’t seem to have learnt a thing….

I live here too

I don’t know if it’s the New Year, but I woke up today and I thought: I live here too. One of the reasons I’ve been so drained psychologically is that I’m continually trying to adjust to mum’s demands and needs. It is her house after all. But this morning I went out into the garage and began to unpack my books. At the moment, they are lying over the floor in the sun lounge, but tomorrow, hopefully they will get put onto the bookshelves.

My New Year’s resolution was to be more resolute. By that I mean, I must set my own boundaries. I must set timetables and goals, things I want to achieve each day – and not get sucked into the lazy acceptance of watching tv or just dithering around, waiting for her to get up, or the carer to come – or not feeling I can get out my possessions.

Mum has always been very controlling. When I was a kid I dealt with this by being ‘absent’, daydreaming or burying my nose in a book. Then I left home and kept my life private, ‘sharing’ as little as possible. Since I moved back here, I’ve been unconsciously following the same strategies. Burying my nose in a book or my computer but also, hesitating to unpack my things. When I go to someone’s house, I always study their bookshelves, to see what sort of person they are. I don’t want anyone doing that to me here!

But when I did get out my books, it was great, like meeting old friends again. And there are so many I haven’t actually read. I look forward to reading them all. And I’ve started a diary – so that I can differentiate the days; write down things I have achieved for myself, in spite of having to clean up all kinds of mess and having the same conversation over and over again!!

I’m keeping my fingers crossed for a positive 2015!

Nightmare of the Xmas Cards

Sustained by a brief visit to some old friends who thought I needed a bit of TLC (they were right) I returned to deal with the Nightmare of the Xmas Cards.

I ‘m lucky, I have lots of friends all over the world and I like to send them Yule/ Xmas/New Year greetings. It’s a way to keep in touch. But it’s also quite a chore. And this year I’m having to do mum’s cards as well. It’s like wading through mud.

Imagine each of the following dialogues repeated over and over again and often against a constant background of TV noise:

Mum: I’m too tired to think about my Xmas cards.
Me: You don’t have to think about them. All you have to do is write your name inside the ones I’ve prepared.
Mum: I must do my cards to the family.
Me: I have already addressed them and sent them off.
Mum: I’ve had enough. I don’t want to send any more cards this year.
Me: If you don’t send them, people will think you are dead.

(I’ve done my best to make a list of people she needs to send cards to, although some of it is guesswork. Already two cards have arrived from people I hadn’t thought of.)  Then came the Great Xmas Cheque Debate.

Mum wants to know how much she gives her grandchildren at Xmas. So I look through the stubs of her old cheque books (By the way, whoever says cheques are obsolete should come and meet my ma.)

Mum: Why are these old cheque books lying around like this?
Me: You wanted to know how much you gave your grandchildren last year.
Mum: Oh. Shall I give them the same as last year? Or more?
Me: Whatever you want. Just don’t give them less than last year.
Mum: How much shall I give your brother?
Me: Whatever you want. Just don’t give him less than last year.

And then mum says… ‘What about you? Is there anything you want?’ By now, I’m beyond caring. I give what they call a hollow laugh. ‘Can we please just get these Xmas cards in the post?’

Blue Van Man Saves The Day – and Mends the Cooker

Moving down here, I’ve got so much to do and to sort out, life’s been a continual headache – and then, a few days ago – mum’s electric cooker blew up. Solving the problem felt like one bridge too far, but I couldn’t ignore it. We couldn’t manage with just a microwave and a toaster.
I knew nothing about buying cookers. Feeling very sorry for myself I went online, researching how to buy one – and how to get it delivered and wired in – and the old one taken away. Then my brother came and said: it’s just the fuse! And indeed, once he mended the fuse, the hotplates and grill worked again but the oven was still kaput. In brother’s opinion, the element had blown. All I needed to do was get a new one. Easier said than done.
As a newcomer to the area, I don’t have that invaluable list of recommended trades people. Mum’s neighbours suggested I went to a shop in town that sells white goods. What good advice. The shop wasn’t a big, cavernous superstore out in some retail park. It was a regular high street shop, run by two friendly chaps who, without any fuss at all, said: You need Blue Van Man. He’s efficient and he’s honest. If the appliance can’t be repaired, he’ll tell you.
Feeling hopeful, I rang the number. Amazingly, Blue Van Man happened to be on a job just round the corner. Within an hour he was in our kitchen. He said the element had indeed blown – ‘must have been quite a bang!’ – and the thermostat had also blown. He asked if I wanted to repair it? So my internet researches came in handy after all, because I knew the price he quoted me for a repair was a quarter of the price of a new oven – with all the attendant installation costs. And at mum’s age, she really doesn’t need to buy a new cooker. I asked him to repair it and, within 30 minutes, we had a functioning oven which, fingers crossed, will last for another couple of years. What a relief.
I felt like a character in a Fairy Tale, where someone is presented with an impossible task which they somehow manage to accomplish with a bit of magic, and some friendly helpers – such as my new hero, Blue Van Man!!

Conflict of Lifelines!

I managed to pack up my flat and move all my things down here without too much hassle. It seemed like it would be hard but it all went without a hitch. The only casualty was a bottle of soy sauce that lost its cap and spilt in the removal van. Most of my stuff had to be stored in the garage – it all fitted in easily. My furniture fitted into the spaces where I hoped it would fit. Everything went smoothly – until I tried to connect my broadband.
As I made my plans to move in with mum, I thought I’d be able to cope just as long as I had the internet. I planned a virtual existence, an e-life that would give me a connection to the outside world – and help keep me sane. But – when I plugged in my broadband hub, nothing happened. No internet. I phoned BT. After hanging on for 20 minutes I spoke to someone who suggested I check a few things. I did those checks but – still no internet. I began to worry. I phoned BT again and spoke to someone who suggested some other checks. Still no joy. I started to get a bit panicky. I phoned BT again and after another long wait – it was third time lucky! A young woman asked me a series of questions and – bingo – the mystery was solved – though not resolved. Mum’s emergency button, which works through the phone line, was blocking my broadband.
Our lifelines were in conflict! Mum needs that button. She’s had several falls recently and if she has another one when I’m not there, she can summon help even if she’s stuck on the floor far from the phone. But I need the internet. I rang the emergency button people in hysterics. They were quite unfazed. Oh yes, they said, it happens all the time. You just need to plug the ADSL lead into a different socket.
The next morning, at 9 am a car pulled up outside the house. A young woman came bounding in, threw herself down on the floor by the plug, pulled one thing out, put one thing in and – hey presto – everything worked perfectly, no problem at all.
I was so exhausted by this crisis that I couldn’t switch my computer on again for days!

Without a backward glance

My first day at school I did not cry and cling to my mother’s skirts like other children. I ran away across the playground without a backward glance. Over the years, my mother would often retell this story. At the end she would repeat, in a doleful voice  ‘without a backward glance’,

Yet, a lifetime later, I’m about to move back home to live with her. No one made me, but I felt I had no choice. She’s 94 and can’t cope with the world alone anymore.

Would it be easier if she went into a care home? She’s not ready for that and besides, I can’t imagine a home where she would settle. She’s not the easiest of women. And I’m used to suiting myself. Let’s see how it goes.