Category Archives: dementia

Mum lives two realities at once.

First of all, thanks for all the helpful advice re the dilemma I had a few weeks ago over dad’s love letters. In the end, I did tell mum I’d found them. She seemed to be having a good day and was quite like her old self so I told her I’d been sorting things out and had come across a box of letters from dad.

Immediately, her face lit up. ‘I kept them!’ she said, so she knew exactly what I meant. I asked if she’d like to have them with her and she said she would. But when I took them in, she wasn’t having a good day. When I showed them to her, she didn’t know what they were. She didn’t recognise the box and the letters didn’t seem to have any resonance for her at all, even when I pointed out her old address and the war-time postage stamps.  When I showed her my baby photo she asked, ‘Who’s that? It looks familiar.’

Luckily, I found her lack of recognition amusing. I have after all changed quite a bit over the years.

It seems the only babies mum cares about these days are my brother’s children. Ever since her first fall she’s been living in a time warp of nearly 35 years ago at a time when brother’s first wife tragically died and, for a while, his young, motherless children were cared for by their grandparents. And so Mum asks continually if the children are ok? They’re upstairs, she says, but they haven’t made any noise. I did ask if ‘the children’ were me and my brother, but no, it seems she does mean her grandchildren.

It’s obvious she’s returned to an event which must have been deeply concerning for her. So, I reassure her that the children are fine. They are in their own home. Then I add: they are grown-up now with children of their own. In fact, the babies who come to see you are not my brother’s children but his grandchildren!

Last week, my niece turned 40. I got mum to sign her birthday card. Mum shook her head in wonderment. ‘40! Granddaughter is 40!’ Then she said, ‘The mind is a strange thing. It’s like I am living two different times at the same time and they get muddled up and meld together.’

I found this an incredibly lucid comment. And a possible window into what it’s like to have dementia.

I told her: you’re like someone time-travelling with Dr Who in the Tardis. Sometimes being in the present while simultaneously, being in the past. As she’s a fan of Dr Who, this made her smile.

These days, as I live alone and am somewhat isolated, I often think about the past even if it’s simply on the level of: how on earth did I get myself into this situation? And I’ve found certain memories isolate themselves and continually reoccur – apparently, they’re still very much alive in my subconscious. However, I do know that they are memories. Similarly, when I see a photo taken 40 years ago, I know it’s a photo of me yet at the same time, it’s a photo of someone who’s not me anymore.

For mum, it’s not simply that she’s lost her short-term memory. Her memories, especially ones that are particularly meaningful, seem to have pushed themselves into the centre of her reality and are replaying themselves as if they are happening now. And she can’t separate the past from the present.

But it was interesting she could grasp the concept of a dual universe; of the fact that she’s living in concurrent realities. But of course, the next time the subject comes up she’ll have forgotten all about our conversation and will ask me once again whether I’ve seen my father or if the children are all right?

 

I have issues with the hospital

.IMG-20190131-WA0000When mum had her fall in December, the hospital sent her neck scan to a major orthopaedic unit at a hospital about 30 miles away. The results had been inconclusive – they couldn’t tell whether it was an old neck fracture or a new one, so they decided she’d better wear a neck brace for between 2 and 6 weeks with a review after 2 weeks. As that would fall within the Xmas holiday period, I didn’t think much about it when they didn’t contact us, but as it drew near to 6 weeks, I asked the Care Home staff if they’d heard anything.

Mum is incredibly uncomfortable with the brace: she can’t sleep properly, she can’t eat properly, she needs a straw to drink. It rubs on her chest and under her chin. With the result, said the Care Home, that she keeps trying to take it off.

They assured me they’d been phoning the hospital but had not yet got any answers. When we were into the 7th week, they said the Doctor’s secretary had rung to say he would be looking at the case. But it had nothing to do with any doctor! The physios had put it on, following the orders of the main hospital. This Doctor wouldn’t know anything about it. I decided I was going to take matters into my own hands and put it in writing to the hospital that, if they did not respond soon, we were going to take the brace off anyway.

At this point the paramedic from the local GP’s surgery got involved. I know him, he came to the house a few times when mum was still living at home. He said, leave it with him, he’d sort it out and indeed, he rang me back the next day. He had got in touch with the physio. She’d been on holiday, was shocked to hear nothing had been done and would quickly check and get back to him.

That was on the Wednesday morning. On Wednesday night, mum fell out of bed again and smashed her head again. Apparently, she was rolling over, trying to take off the neck brace and rolled off the bed. I had a call on Thursday morning, had to drop everything and go off to the hospital. Mum had an x-ray, then a scan. It’s an ill wind, everyone said, because then maybe we can get this problem with the brace sorted out. But really mum should not have had this second fall. She bashed her face again to the extent that one of her eyes was completely swollen up, hurt her back again and for the first few days had to have an oxygen mask. She’s 98 – she doesn’t need this and quite frankly neither do I!

The first day, I spent 7 hours at the hospital. At that point it had started to snow, so I phoned a cab and got home just before the snow became heavy. I know we don’t have a lot of snow compared to many places, but by the same token, we aren’t equipped for it. The next morning was below freezing and I got a cab into town as it was too slippery and dangerous to walk to the bus stop – by the evening, the snow had thankfully cleared although it was still bitterly cold.

I can’t afford to take a taxi every time I go, so my other journeys to and from the hospital have been on the bus and they have been horrendous. It can take between 1 ½ hours and 2 hours each way, depending on the connections. Most of the time it’s been raining, with a bitterly cold wind. I’ve managed to grab a bit of shopping in between waiting for the bus – but add the travelling to spending several hours in the hospital – and it’s a pretty long day. That’s what bureaucrats forget. Even though I’m no longer mum’s official carer I’m still expected to drop everything, cancel appointments, whatever and head off to the hospital. (And I have to say, there are always quite a few other adult daughters sitting with their aged parent in the geriatric ward and they all have something to say about the lack of support from their other siblings).

Anyway – back to mum. The first couple of days they classed her as having a spinal injury and made her lie flat – which is very uncomfortable for her. As they’ve agreed it’s an old injury and she’s therefore been walking around with it for a least a couple of years – I asked if she could sit up in a chair- while wearing the brace, naturally! And they did finally agree to that. Today the Care Home are going into to assess whether they’ll accept her back. I hope they will as she’s happy there and also, if they don’t – well, I’ll cross that bridge if I have to. And it will be me who has to sort things out. After one text on Friday afternoon I had no word from my brother until a brief text on Tuesday evening. As you can imagine, I could hardly be bothered to reply to him

But the fact remains, if the hospital had only got back to us when they said they would, mum might never have had this second fall.

 

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.

Mum leaves home

I’ve been waiting for a permanent room to come up at the Care Home mum likes. Essentially, I’ve been waiting for someone to die, which is a bit weird, but it was the only thing to do. About a month ago, the owner of the Care Home – or the Missus, as mum calls her – told me a resident had been taken ill and wasn’t expected to survive. But that old lady proved to be tougher than everyone expected, and she regained her health. Then another resident was taken into hospital but, as I said to Brother – I’m about to go on holiday. I can’t risk being stuck with nowhere for mum to go.  What if this second old lady also proves tougher than they thought? And indeed, I didn’t want to wish her ill just for my convenience.

And so, I found a respite room for mum at an alternative Care Home. But the truth is, mum’s needs have become such that I’d been counting on her moving permanently into the Home before I went away. Now I took a deep breath and came to terms with the fact that it wasn’t going to happen. I really did not know how I would cope. Mum is getting so frail, it’s terrifying each time she stands up and goes to the bathroom. I can no longer get her in and out of the house without a second able-bodied person to help – and I’ve recently lost both of the main carers who I relied on to support me, let alone mum! Plus, I have a hospital appointment to start my treatment in early November so I really did need to find a place for mum during October. I consoled myself that by then there might be a place at the favourite Home. But the fact is, I was beginning to despair.

At this point, I had a call from a woman on the Carer’s Support Team. She’d come round to see me a few weeks previously and had ended up giving me an hour’s counselling session, which she must have thought I needed. And perhaps I did. Anyway, she rang to check on my mental health. I admitted I was pretty down. I’d so hoped to get mum settled before my holiday. Now I was faced with finding a place for her before the hospital appointment. She offered to help me do that, which I really appreciated. So different from the bureaucrat I spoke to before. None of this ‘oh you can manage with extra help from the Care Agency’. No. She agreed. ‘You need to find a safe place for your mum as soon as possible.’ So that was a load off my mind.

Then, at the eleventh hour the Missus rang. There was a permanent room for mum after all. It would be ready the day before I needed to leave. I didn’t even feel excited, I felt numb, I didn’t dare allow myself to relax or I’d have to admit just how hard and dreadful it’s been the last few months. I understand it’s a sad thing for mum to leave home. I expect there’ll be some hiccups. I’ve had several serious conversations with her about how things can’t carry on as they are, but then she forgets what I told her. However. Last week, she moved. I was in such a state myself, I had to go back twice with things she needs but I’d forgotten to pack. The next day I went to London to stay with friends, and then on to see some more friends in Paris, and I forgot to do all sorts of things before I left. I did one thing in particular that was so dumb I can’t believe I actually did it. However, it seems that I did.

I guess I’ll slowly unwind and come to my senses. I still can’t believe it has really happened, keep worrying things will go wrong. I do so hope mum will settle happily in the Home because I’m really worn out. On the plus side, I’m going On Holiday tomorrow! I hope it’ll be fun. I really do need to recuperate!

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 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.

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.

 

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!

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.

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.