I have issues with the hospital

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

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

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

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

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

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

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

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

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

 

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I find Dad’s love letters

When I saw mum in the hospital and she looked like she was at death’s door, a lot of thoughts flashed through my mind. As, amazingly, she now seems to be on the road to recovery, I’ve been unpicking those thoughts. The first one was: She can’t die yet! I haven’t cleared out the house. It’s too untidy for me to invite people for a funeral!

When I moved down here, my stuff was stored in the garage. When mum moved into the Care Home, I moved my things out of the garage but I couldn’t put them away. To do that, I needed to make space, which meant clearing out mum’s drawers and cupboards. But I didn’t feel I could do that while there was any possibility she might return to live in the house. And of course, I had my surgery, developed the problems with walking etc etc so I didn’t have the energy, the physical strength – or the sense of psychological permission to get on with clearing out the place.

However, things have changed and one of my new year resolutions was to make a start on this task of de-clutterng. I began with mum’s bedside cabinet. The top drawer was full of documents: some from banks, some from hospitals, some possibly important, some probably not. Some went into a pending pile, some in the bin. The second drawer was full of scarves – most of which will go to the charity shop. The lower drawer had a load of old nail varnish (in the bin), old hair rollers (in the bin), some quite nice hair slides which I don’t remember mum ever using but which I might use (in the pile that will be kept) and then, right at the very back of the bottom drawer: a mysterious box, quite old but with a rather nice design on the lid.

I peeked inside: it was full of old letters. I needed my reading glasses before I could explore further so I put them to one side. When I did sit down with them, I saw the envelopes were addressed to my mum in her family name, that is to say – before she was married. My heart skipped a beat. Mum had a fiancé who was lost in the retreat to Dunkirk in 1940. Had she kept his letters secretly all these years? I opened the first one and saw it had been sent from an army camp in Yorkshire. My dad had been stationed in an army camp in Yorkshire. Indeed, he had proposed to mum while they were walking round the roman walls that encircle York. I relaxed. The letters were from Dad.

I skim read a couple, not really wanting to pry and yet curious. I was a little surprised because Dad always said he wasn’t much good at writing. I wondered whether he had asked someone else to write these letters but they seemed too personal, very passionate declarations of love so I thought it unlikely he’d dictated them to someone else. I also realised I’d never really heard his voice. Dad never talked a lot, was a self-professed ‘man of few words’. When I was younger, he and I never really communicated. We tended to have rows about politics – or other things he didn’t agree with concerning the way I was leading my life. It was only in later years we really had anything that could pass as a conversation. I’d certainly never heard him speak like this: fluently, ardently. I looked deeper in the pile. Here the letters were now addressed to my mother as a married woman: his darling wife.

They got married just before the Normandy Landings in 1944. Dad was part of the D-Day force; he had made his way through France, across the bridge at Arnhem and into Belgium. There were no letters from his billet in Brussels – when he stayed with a family with whom we kept in touch with for many years. In fact, I had dinner with them on a visit to Belgium in 1969. And they had told me, my Dad never went out, he only wanted to write letters to his beloved wife. The last letter in the box is from an army camp in England saying he was about to be de-mobbed. That he would be coming home and that this was the last time they would ever be separated.

I got an insight into their relationship. I’ve always known their marriage was a love match but I wasn’t quite prepared for my dad’s ardent outpourings (all very chaste and romantic I’m pleased to add, so I didn’t feel I’d uncovered anything too embarrassing).

But one thing does make me feel uncomfortable: apart from the letters, there was one other thing in the box – a photo of me as a baby. I was the outcome of this outpouring of love! That does feel weird, although I haven’t yet worked out why.

I obviously can’t throw these letters away but how would mum react if I took them to show her? Would she be pleased to see them or cross that I had found them? I haven’t yet made up my mind about that.

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The letters

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Mum and dad on their wedding day.

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Me in my pram!

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.

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 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!!