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.

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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 has a bacon sandwich and I have a narrow escape

Mum really enjoyed the visit from my brother and his partner. She enjoyed having different people to talk to.  But then, two fresh, temporary carers have to be better than one grumpy, monosyllabic daughter.

She also enjoyed a change of diet. She had bacon sandwiches – which she likes very much, but which she never gets from me because I don’t eat bacon and won’t cook it; she had sausage and mash – which she also likes. But although I will cook her sausages (in a different pan from my veggie ones!) I get bored mashing the potatoes. Mum complained so much about how my mash was so lumpy that I now refuse to do it; and she also had take-away fish and chips – which I do eat, but can’t provide as I don’t have a car to go and fetch them.

For my brother and his partner it was a novelty; after two nights, they could leave and go back to their own lives. And as brother admitted, they did not have to deal with any messy ‘events’. Well, good, I’ve already booked them in for a second visit.

Just being able to walk away from the house, knowing mum would be 100% looked after, made a huge difference. To be able to hand over the responsibility of mum’s care to my brother and head off to the station, felt like I’d laid down a burden. And even though my break lasted little more than 48 hours I felt much better for it, with more energy to carry on with what is an increasingly heavy task of sheer drudgery.

I spent my free time in London. I stayed with my South London pals, one of whom I’ve known since school.  It was so civilised not having to get up at the crack of dawn, get mum changed and then make a dash for the station, praying the train would be running. It was so relaxing to be plied with delicious food and sensible conversation the evening before. Then, the next morning, to eat a leisurely breakfast and get a bus over the river. We were meeting up with two other old school friends at the Tate Gallery. We planned to see the new retrospective exhibition of David Hockney. When I walked into the exhibition, I almost burst into tears. I felt as if I’d found my identity once more; that I was again a person I recognised, the sort of person who goes to art galleries. And I’ll say in brackets that the next morning, before I returned here, we went to see another exhibition, this time of Vanessa Bell, which was equally wonderful, although in a very different way.

But back to our rendezvous at the Tate. After lunch, we couldn’t decide what to do next. One of us wanted to check out a nearby boutique that sells individual, crafted jewellery; then someone else suggested we went to a cafe she’d discovered that was just round the corner. But the cafe had closed down. We dithered, trying to decide what to do next.

We discussed getting a bus over to the South Bank. If we’d done that, we’d have gone round Parliament Square and crossed Westminster Bridge sometime around 2.30pm. When we talked about it later, we couldn’t remember why we’d suddenly changed our minds. But out of the blue, we decided to return to the Tate and have coffee there. Just after 2.30pm, a mad man drove his car into a crowd of innocent bystanders on Westminster Bridge. He killed a policeman outside the Houses of Parliament and was then killed himself. If we’d got that bus, we might well have been caught up in the mayhem. As it was, the Gallery was just outside the locked-down, cordoned off area and we all managed to get home safely.

I don’t know whether I believe in Guardian Angels, but I certainly feel like I had a narrow escape!

By the way, I apologise for not posting sooner but I had some IT issues and I just didn’t have the mental energy to sort them out…until now!

I am overtaken by events

I accepted I was on the point of collapse. I booked mum into the care home. All I had to do was struggle on for another week. But before that could happen, one evening I stood up and found myself in excruciating pain whenever I tried to put my weight on my right side. Which meant I couldn’t walk. I found an old walking stick that had belonged to my granddad, and managed to complete my tasks, getting mum into bed and such like.

I felt ok as long as I was sitting still, but moving about was agony. Trying to get out of bed was agony. The local surgery is quite close, less than 10 minutes walk away. I had to phone for a cab to get myself round there. The Doc assured me the problem was purely mechanical. I needed to rest. But of course, I couldn’t rest so he gave me some strong pain killers which allowed me to carry on for the next few days. Once mum went off to the care home I collapsed onto the settee and hardly left it for over a week.

At first, reading for hours on end felt like pure self indulgence. Then it began to feel weird: to sit on a couch reading for days on end is something you only do if you are very ill or, perhaps, completely exhausted. But I needed to do some things – like buy food, send cards for birthdays and wedding anniversaries which simply couldn’t be left. By now I’d found a proper walking stick that I’d used when I had a previous injury, so I got a cab into the centre of town and hobbled about. For once, I really appreciated that I live in a very small place! Then a cab home and back to the settee. I managed to extend mum’s stay in the care home for a few extra days. And I’ve been lucky to find a very good local osteopath.

She explained my back muscles had gone into spasm. She’s suggested certain ergonomic strategies I can use when undertaking tasks which I have to do in my role as a carer – but which are particularly hurting my back. She also pointed out that there is age related ‘wear and tear’ which has exacerbated a certain weakness in my lower spine.

Mum is home now and I’m being as careful as possible with my movements. In the short term, I’m improving.  I can walk as far as the bus stop and get a bus into town and I hope to get back to normal eventually. But in the long term, I think this is a wake up call. It’s time to look for a permanent home for mum. No rush, we’ll spend the next few months visiting different places, testing the waters, but I can’t continue like this. I feel like I’m being hammered into the ground. And I’ve told my brother he needs to do more to help me with mum – more about that in my next post!

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!!

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

I aim for high cognitive reserve!

A friend suggested I enrol on a free online course called understanding dementia, run by the University of Tasmania. http://www.utas.edu.au/wicking/wca/mooc

So far, I have completed two out of the total nine weeks and done the basic introductory sessions – and if knowledge really is power, then I’m definitely feeling more powerful! That’s to say, I’m finding it much easier to deal with mum’s lack of short term memory now I understand about the hippocampus – the section of the brain concerned with memory formation. It helps people order things that happen during the day and contextualise events.

So now, when mum asks me a question for the umpteenth time, I visualise her hippocampus malfunctioning. This intellectual understanding has helped me to keep my cool. I understand there is a physiological reason why she can’t remember what I’ve been telling her for several hours. I understand she really can’t hold a thought because a certain part of her brain is collapsing (well there’s probably a more scientific way of putting it).

When I had to state my reasons for doing the course I wrote: my father died of vascular dementia, my mother is increasingly confused – and I want to be able to recognise the warning signs for myself! I haven’t yet got to that part of the course, but I already know I must develop a ‘high cognitive reserve’. As I understand it, this means creating new pathways for information to flow between neurons, because the more alternatives you have, the greater the chance the brain can find other ways to pass information between cells if it becomes damaged by dementia.

Neurons in the brain build connections, adapt and develop as we learn new skills. Things like learning languages – or doing a course of study – are ways of creating a cognitive reserve. With this in mind, I decided to start speaking to mum in French – just simple phrases such as ‘I’m on my way’ or ‘do you want a cup of tea?’. She studied French when she was at school, in the early 1930’s, and amazingly she does still remember some of it and quite likes that she can work out what I’m saying. And it’s actually making those boring daily task more fun for me too.

A la prochaine!

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.’