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!

Mum turns 95

This week was Mum’s 95 birthday. Two days before, she met her great-granddaughter for the first time. This has lifted her spirits no end.

She’s been saying recently that she just wants to see The Baby and then she wants to ‘go’. Indeed, one morning she was so blue, she said she didn’t even care about  seeing baby! She asked me several times if dad died at Xmas. He died just after New Year, but this is the first time she’s brought the subject up in the five years since his death. She wondered if she would die at the same time of year as he had?

My grandmother had a stroke on the anniversary of my grandfather’s death and died shortly afterwards. So I began to be a bit concerned. But since mum’s seen The Baby, there’s been no more of such talk.

The birthday celebrations went on for several days, starting with a visit from my cousins bearing gifts from their side of the family. Since then, there’s been a steady stream of visitors: my brother, his kids and their partners – and The Baby of course; neighbours etc. At the last count, mum had received 19 birthday cards. She even got greetings via Face Book. All this has improved her mood immensely.

Mum has always been a gregarious person who enjoys chatting and laughing. I can’t really provide that sort of companionship. I could do, if there were two of me: one to do all the work and one to sit and chat and watch tv. The carers, who are here for an hour, the cleaners, the hair dresser, all cheer her up briefly, but mainly, she misses my father.

She told me, ‘I just want to see my Frank. Do you think he will find me when I die?’ I don’t know the answer to that one. I imagined the afterlife like a very crowded wartime railway station with refugees pouring off packed trains. I said ‘Well, thousands and thousands of people die every day. It might not be so easy for him to find you.’ She smiled and shook her head. ‘You don’t know my Frank. If there’s a way, he’ll find it.’

Well, of course, I hope she’s right. But for now, The Baby seems to have provided some sort of compensation for being forced to stay in this boring world. She has the child’s photo by her chair and speaks to it a lot. And she does seem to be much happier. I guess she really was, quite simply, depressed.

 

mum&alana

A year has gone by.

A year has gone by since I started this blog. First I want to say a huge thank you to everyone who reads it, and who have left comments. I can’t tell you how much that means to me. There are times when I feel very cut off and isolated. During those times it’s great to know that what I’m writing is being read. I’m like a character marooned in outer space who suddenly gets a response to the signals she’s been sending off into the cosmos in the hope that someone somewhere might pick them up.

Having said that, I don’t think I made a mistake by moving in with mum. I miss my life in London, of course I do. But it’s also clear that her condition has deteriorated in the last twelve months – which is good because, if she’d stayed the same, I’d be wondering why I had bothered to give up my freedom! Whereas these days it’s obvious she can no longer manage on her own.

It’s been much harder work than I expected. I expected I’d help her with things she was struggling with, owing to her arthritis. I didn’t anticipate she would just put her feet up and expect to be waited on hand and foot! Also, I did not realise how confused she was mentally. I thought she had difficulties with the modern world, but I really had no idea of the true extent of it. Nor did I know anything about dementia. I know quite a bit more now!

I thought I’d be bored, but I battle to have time to myself. I never have a lie-in or an early night. Even when I was sick, I never got that luxury. It’s also annoying that I can’t control the use of my time. Last night, I thought – ‘I’ve got an hour, I’ll get the blog post finished’ – at which point there was a cry of distress from the bathroom. Mum was having one of her incidents. To sort it out and clear it up, took an hour. And by then, I just wanted to go to bed.

But the hardest thing is that I’m never alone in the house. I used to live by myself and I just wish I could have a day, even a few hours, when I didn’t have to worry about someone else’s presence! At night, if I can’t sleep, I’m always aware that I could wake mum up and indeed, when I go to sleep, I’m aware she could call me in the middle of the night, and I’d be duty bound to get up and tend to her! Of course, I’m by myself when I go out, but that’s not like staying at home and relaxing on the couch. And when I leave the house it’s normally because I have chores. A few friends have nobly made their way down to Chichester. We’ve generally met up for lunch which has been a wonderful chance to have some decent conversation – and also for me to get to know the city because of course, I’ve no prior connection to the place at all.

And now winter is coming – a time when we in the northern hemisphere spend a lot of time inside, on top of one another. I’ll admit the idea of spending a second winter here, does make me feel pretty gloomy. But I have strategies in place now to protect my boundaries. I have this blog, and most days I try to spend a couple of hours doing ‘creativity’ for my mental health – that’s to say, I’m writing a fantasy novel which is marvellous escapism. And I enjoyed the spinning workshop I did on my birthday. I even produced a small amount of wool – let’s see if that will lead me somewhere new and unknown during the next twelve months.

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

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 a kiss from dad.

Most mornings it’s hard to wake mum up. Sometimes when I go into her room, I think she may have died. Then I notice a fluttering of the eyelids, a bit of a gasp and she’s struggling back across the border lands to consciousness. Often, you get the impression she doesn’t like what she sees.

But the other morning it was different, she was alert and happy. She told me, in the night, dad had leant over the bed and given her a kiss. Dad’s been dead for 4 ½ years and in that time mum’s been disappointed that she hasn’t felt his presence around her. Now, finally he had come. He had leaned across and given her a kiss and told her he was worried about something. Worried about what? She did not know.

She often asks me, do you think I’ll see your father again? Well, I tell her, that’s a question no one can answer. But I thought, on odds, there was a 50/50 chance. Either there’s nothing and our consciousness dissolves, or we remain conscious but in a new dimension – in which case, I told her, it was possible they would find each other. She feels sure dad will meet her. ‘If there’s a way, he’ll find it.’

Perhaps her hope to see dad is a way through a dark place. Mum has a lot of pain. She cries a lot and says she’s had enough and wants to die. Still, it must be scary, stepping into that unknown beyond. Perhaps the idea that dad is waiting for her gives her strength to face it.

Perhaps he came to tell her he would be waiting to give her a hand across.

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!!!