My niece is getting married

My niece, that is to say my mother’s granddaughter, is getting married in a couple of weeks. The wedding was announced earlier this year and since then it has been a constant background of white noise in my life. Mum wants to go to the wedding, I mean she really wants to go to the wedding but she’s not sure if she should go. ‘It will be too much trouble for everyone.’ But you want to go? ‘Yes, I want to go.’ So, we will try to work something out. And then, the next day: ‘I don’t think I’ll go to the wedding.’ But I thought you wanted to go? ‘I do! But perhaps it will be too much trouble for everyone.’ On and on, in a refrain which has been repeated endlessly – and when I say endlessly, I do mean, endlessly – for months.

One of the main issues is that mum will have to stay alone in a residential care home. She can’t possibly stay in the hotel with everyone else as she is too disabled, incontinent etc. But it took a long, long time and many conversations before I was absolutely certain that mum had fully grasped this. She often complains that she hasn’t understand something – even though we’ve had several seemingly sensible discussions about the matter in question – so I couldn’t risk her having a tantrum about staying in a care home when it was too late to do anything about it. And so, slowly, patiently, I have repeated and repeated: you will have to stay ALONE in a residential home. Do you understand?

The next step was to find a suitable place. My brother and my niece live in the area so I thought it made sense for them to look for one. I had the impression my brother didn’t really want to be bothered. ‘She’ll never make the journey’ (It’s three hours in a hire car). And ‘It’ll be a logistical nightmare.’ That’s so true. However, she does really want to go and she thinks she’ll be ok to make the trip so, after a lot of encouragement on my part, my brother actually did find a place that he thinks will be ok and which is close to where my niece lives. And it seems mum has accepted she’ll be staying there. My nephew, meanwhile, has elected to organize a wheelchair for mum to use during the wedding day.

So, this is the plan. Mum and I will travel on the Thursday. I’ll leave her at the Home and get a cab to the hotel. Mum will spend Friday resting although I will check on her (apparently there are buses I can catch) after which I will spend the day mooching around a town which does not appear to have a museum, art gallery or historical centre. (Its tourist webpage lists a shopping mall as one of the attractions!) On Saturday, my nephew and his wife will pick me and my brother’s partner up from the hotel, then we will pick up mum and go on to the church. At some point on Saturday night, someone (probably me) will take mum back to the Home in a taxi. On Sunday the rest of the family can visit mum, but I’m heading for Glastonbury which is only a few miles away from the hotel. I’ll spend two nights there on a sort of recuperative retreat while mum rests. On Tuesday morning I’ll get the bus back to the town, which should take about an hour, and get mum ready for the arrival of the hire car. And then we’ll come back here, hopefully without any drama.

I don’t mind helping mum get to the wedding, and working out how to cope with her disabling arthritis but I hadn’t prepared for the stress that’s caused by her dementia and loss of short term memory. Even a couple of days ago, she started the litany again. ‘I don’t think I’ll go to the wedding, It’ll be so much trouble for everyone.’ I nearly screamed. I told her it’s all been arranged and it’s too late to change her mind!

This wedding should have been a pleasant if slightly dull family occasion. It should have been a long weekend that just involved booking a hotel room, booking a train ticket, and buying a nice outfit. But now, it’s become something I can’t think about without feeling I’m getting a migraine, something that needs to be endured. And in mum’s mind, it’s assumed huge proportions – like the coronation or something equally momentous. But then perhaps, it’s the last major social event she expects to attend.

I’ll be oh so glad when the whole thing is over!

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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 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 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