Mum gets a shot in the arm.

The doctors are worried about mum. They think her slothfulness is partly caused by anaemia. Her blood count is low, but she can’t tolerate the iron pills she’s been prescribed. She bleeds quite a bit from her haemorrhoids and the consultant has suggested a small operation. But, because of mum’s age, it’s risky for her to have a full anaesthetic. The doc said he would quite understand if we decided against the surgery. He would leave it up to us. That is to say, to me.

My brother’s had this particular operation and says it really helped him but, he agrees, there are risks with the anaesthetic because of mum’s age. So he sits on the fence. I’ve tried to discuss the issue with mum, but although she knows she may have an operation, she doesn’t understand that she has a choice about it – nor does she understand that there’s a risk.

In the short term, the consultant ordered an intravenous iron infusion to make mum feel better. She had this last week and there was an instant improvement in her behaviour. Instead of spending the whole day in front of the TV half asleep, she’s been much more alert. She’s been reading; she made a couple of phone calls; she went out to the kitchen and made herself a cup of tea. But, they won’t give her a second iron infusion. The good results will only last for 3 months.

Last week, I decided to take the first step and ask the anaesthetist to give mum an assessment. But when I picked up the phone to ring the hospital, I became anxious and didn’t make the call. Would the operation be a mistake? Did I want mum to have it because it would make things easier for me – while ignoring the dangers for her? But her quality of life seems so much better now her blood count has been raised by the iron infusion. If the operation stops her being so anaemic, isn’t that worth a small risk?

Yesterday I rang the hospital again. This time I said we wanted to go ahead. After all, we can still change our minds while we’re waiting. But, if we do want to go ahead, we will already be in the queue. That’s my thinking, for better or worse!

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.

Mum has a fall

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

I am a sulky teen

Last week I went away for a couple of nights (I know, I’m lucky to be able to get away, many carers can’t) but when I came back, absolutely replete with good conversation and good food – I really didn’t want to be here.

I felt I’d expanded back into my old persona. I didn’t feel like fitting myself into that diminished outline of myself I have to inhabit as a carer – that’s to say, a person who has to put someone else’s needs first. I sulked, I disappeared into my room and started texting, I put on my headphones and plugged myself into some music. I didn’t want to drop everything and answer when I was called. I didn’t want to serve up a meal when I wasn’t hungry, or abandon my emails to answer the same question for the tenth time.

I’d had some hassles on the return trip: bad transport connections, having to lug my bag around in the cold. I got back here rather tired and frazzled. I wanted some acknowledgement that I’d had a rather demanding day and a long chilly journey. I didn’t want to be nice to someone who ignored how I was feeling; who just sat there and expected me to wait on them hand on foot. I didn’t want to help them, even though I knew they were old and achy and finding it hard to walk, pick up things or undo buttons. I didn’t care!! No, I didn’t!!

Of course, you can’t be cruel to the one you look after, so, I gritted my teeth and mended my ways. But for a couple of days, I was sulky and begrudging and surly, just going through the motions. Because there’s history, isn’t there, between parents and children, between mothers and daughters? Sometimes it takes a supreme effort for me to overcome that powerful urge to shift back into the old game-playing, power battle that defined our relationship for many years.

I’m not asking for sympathy, it was my choice to move in with mum but – I’m not a selfless saint. Sometimes I’m just a sulky teen, resenting the fact I’ve been ordered to do the washing up.

Talking to strangers

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

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

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

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

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

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!