Category Archives: caring for parent with dementia

I feel unexpectedly guilty

Moving Mum into the Care Home has been harder than I thought it would be.  She’s used to staying there when I’m not around so, while I was on holiday, everything was ok. But since I’ve been back, things have been very difficult. Mum really wants to Go Home. I understand that, and if there were any way that could be arranged, I would do it. But she can no longer look after herself – and I can no longer look after her.

Every time I see her, we have the same upsetting conversation. How I have to have an operation and need her to be safe and looked after in the Home. She insists that she could manage on her own and has to be reminded that she hasn’t done that for several years. Eventually, she accepts that there’s no alternative. But the problem is, she forgets the conversation. So next time I visit, we have to have the same conversation all over again.

She grasps at straws. Can she go and live with my Brother? I explain that, while she could go and live in a Care Home near him, it’s impossible for her to go and live in his house. I’ve been visiting her every two or three days (and have arranged for one of her former carers to visit twice a week on days I miss) but she forgets I’ve been in.  Last week my brother actually came for his first visit. Mum cried. She told us ‘I won’t make it if I have to stay here! Abandoned by my own children!’

She’s never been a particularly maternal type of mother. In fact, she’s often been hurtful and self-centred. But even so, such scenes tug at my heart strings. She’s 97 in three weeks, so she’s unlikely to go on for that much longer wherever she lives – but of course she’d like to spend her last years in her Own Home. But the only reason she’s been able to stay there as long as she has done, is because I gave up my life in London and moved down here. And yet I still feel tremendously guilty. I feel guilty towards the Ancestors: my father, my mother’s sisters. I feel like I need them to forgive me for putting mum in the Home.

After three years of full time care-giving, I was struggling and overwhelmed. The work was unrelenting, the stress enormous. I’d developed my own health problems. I’m sure the Ancestors know this! But even so I still feel bad.

Up till now, it’s been me who made the sacrifices; it was me who gave up my home to look after mum. I didn’t think of it in that way because I didn’t think I had any choice. Now I don’t think I have any choice but to settle her in the Care Home. So I really did not expect to feel soooo guilty!

On the other hand, I did have a really great holiday in Crete and Santorini so I am feeling a lot better than I was before I went!

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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 has a holiday

Mum really wanted to visit my brother’s new home in Somerset. Because it would probably be the last holiday she ever had, we discussed how it could be arranged. The first hurdle was the 2 ½ hour drive to where my niece lives. Mum made the journey last year for niece’s wedding, and stayed quite happily in a Care Home round the corner from niece’s home. Now mum is a year older and much frailer – but, keeping my fingers crossed, I booked a car and a driver and we made it that far. Mum then spent two days resting. She was visited by my niece, who’s heavily pregnant with her second baby, and Great-Granddaughter – who really is the only person mum cares about these days.

Niece and her hubby put me up, which was very kind of them because, what with the advanced pregnancy and the demanding two-year-old, this young couple already have quite a lot on their plate. But I did need to be nearby. Mum had a bit of a meltdown the first evening. The Home rang me and I had to walk round and reassure her, but basically all went well.

Brother lives another hour’s drive to the north. Saturday morning, he came and picked us up. He’d found a very nice Care Home close to his house, with a view of the sea from the garden. It seemed a nice place, lots of ladies to chat to in the lounge and mum settled in happily enough. Brother also arranged to borrow a wheelchair – which made things much easier for moving mum around.

On the Sunday, mum was taken to visit my brother’s new place. Originally, he’d said she would not be able to get over the threshold, but eventually he worked out she could enter through the garage, in the wheelchair. My niece, her hubby – and Great-Granddaughter obviously – and my nephew with his wife who’s 7 months pregnant – all arrived for lunch. It’s unlikely mum will see either of these expected babies for a while, so at least she’s met them in utero as it were.  And we had what may well be one of the last family gatherings. Then, on Monday, Brother gave me a lift to Glastonbury where I spent 3 days on my own, thinking things through while he and his partner took mum round to various places she wanted to visit along the north Somerset coast. She was particularly keen to go to Weston-Super-Mare. We think she went there with my dad when he was in the army, but we’re not completely sure.

Then he drove mum back to the Care Home around the corner from my niece. I got back there the next day. Mum seemed fine. My niece had been to visit her that morning with Great-Granddaughter, and we would be going home the next day. We were just sitting down to dinner when my mobile rang. Mum was freaking out, as only she can. Where was I? She was waiting for someone to come and look after her! No one was looking after her! She’d been abandoned! She was disgusted! Disgusted! Etc. Etc.

I trudged back up to the Care Home. The carer was very upset by mum’s outburst. I think the problem was there was no one to chat to in the tv lounge so mum felt lonely and bereft. She wanted to come back to my niece’s house. But that was impossible. It really is not old-lady-proof. There’s nowhere she could sit; the entrance is narrow with high steps. And there was no wheelchair available. And no one to push it if there were.

They are looking after You! Look how upset they are! You need to rest, before the long journey tomorrow! And you saw Great-Granddaughter this morning! And anyway, She’s already been put to bed!

Eventually, I got mum settled and we had our dinner. After this outburst, I was dreading the final drive home but it went ok. The traffic was heavy, as it was a Friday afternoon in the summer holiday period and the journey took longer than usual, but the driver dealt with mum well. To avoid the traffic, he took us on a roundabout route through some lovely landscape, and quaint little villages. This scenic drive has really stayed in mum’s mind. And, although Mum has been tired and fractious since we got back, she does seem to have enjoyed her holiday – and to have remembered most of it! Which is the main thing. Now, I’m just counting the days till my own holiday. I just hope I can last out till then!!

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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!

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 doesn’t know who’s running the country.

One of the basic questions in the test for dementia is whether you know the name of the prime minister. But at the moment I think mum can be forgiven for not knowing who’s in charge. Like many people in UK we’ve been in shock since the results of the referendum to leave the European Union were announced. In fact, the situation is so momentous I really have to blog about it.

Both mum and I voted to remain in Europe. As we live in an area with a high proportion of Leave voters I know for a fact that many people thought leaving the EU would magically improve aspects of their lives which had nothing to do with Europe at all. Of course, some people will have voted Leave after serious thought. I hope for all our sakes that their assessment of the situation may prove correct – but it’s not looking that way at the moment.

It’s become clear that David Cameron, who’s just resigned as Prime Minister, didn’t expect to lose the referendum – and that Boris Johnson, his rival in the Leave campaign, didn’t expect to win. It gets better. There’s no strategy in place for leaving the EU; no one even knows who’s going to be on the negotiating team. This huge event has happened and the people who should be dealing with it seem to be in as much shock as the rest of us.  The whole thing was to do with internal politics of the ruling elite and now the rest of us have to pay the price.

The win, which was by a margin of less than 2%, has revealed a huge fault line running through UK society. People say we must pull together, but I think it’s important to acknowledge that it was such a close result. Many people have remarked they’ve heard better and more sensible debates about the issues involved in the last few days than in all the weeks leading up to the referendum, which was marred by venial and spiteful lies.

I think one reason Leave won was that they seized control of the discourse. And they should not be allowed to do that again. Already, one of the oft repeated slogans is that this has been a victory for ‘ordinary decent people’ – as if the 16 million plus people who voted Remain were not decent, were not ordinary. As if there are 16 million bankers and industrialists opposed to those decent people who voted Leave. I do find this personally offensive.

However, it’s too late now. What should never have happened has happened and we have to live with the consequences. Those of us who wanted to be Europeans can be so no longer. But when mum says she doesn’t know who’s running the country, I can assure her: no one else knows either!

 

 

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.