Here’s the latest update on how my mother and I are doing, as part of my series of journal posts about being a carer. She’s still recovering from her broken wrist, having sleepless nights, and experiencing moments of anxiety and panic. But she’s also regaining some confidence and mobility, which has been great to see, and things are moving forward in terms of the help and support she’s getting from healthcare professionals, which is reassuring.
Contents
Sunday, September 7
This has been another busy week, but it’s shown signs of hope as it’s gone along.
Anxiety & Panic
It started off with a difficult day for Mum, as she was particularly tired and frustrated on Monday, and that night she got angry with me when she wanted me to sit awake with her in her bedroom all night, and I gently explained that I needed to get some sleep and went to bed. She wasn’t pleased, and even tried to get me up again at 3am!
However, on Tuesday morning we did then have a nice chat that brought us a bit closer together. I reminded her that I’m struggling with things as well as her, as I’m only human and can only do so much, and explained how it had been affecting me emotionally. And she admitted that she blames herself for being in her current position, wishing she hadn’t given up on having eye appointments in Devon 20-odd years ago and had kept asking for them instead, even though she’d already tried plenty of times back then.
She’s therefore keen for me to start having regular checkups at Moorfields, like she’s now on the list for, because she doesn’t want me ending up in the same position as her. So we agreed that once she gets a bit better and I’m able to go out more freely, I will make a referral there. Because it is something I’ve been both nervous and lazy about doing, but obviously I do want to make sure my eyesight remains stable. So it’s given her a bit of extra incentive to work on herself.
She’s also continued to have occasional moments where she’s woken from sleep in her armchair in a state of anxious confusion, or in a bit of a panic, and started moving around before she’s fully awake and focused. But rather than just stop her or tell her exactly where she is, I’ve simply kept an eye on her, let her know that I’m there and that she’s safe, and encouraged her to take things slowly and breathe deeply, and she figures things out eventually. It takes longer when she’s panicky, naturally, as she’s too frightened at first to focus on breathing and staying still, but with my continued reassurance she does get there, and I’ve rewarded her with hugs afterwards.
So it feels like an important bit of exposure therapy for her, and it’s also an exercise in self-discipline for both of us – for her to learn how to stay calm so she can work things out, and for me not to instinctively interfere when I know she’s capable of navigating herself.
Help & Support
In terms of help, the occupational therapist from the frailty team came over 3 mornings in a row, from Wednesday to Friday, to help Mum gain a bit of confidence when she experiences disorientation, and to get her back into some basic long cane training. She was really frightened about it before he came on Wednesday, and panicked a bit when he started working with her. But he was really kind and reassuring, and by teaching her to breathe deeply and calm herself down, she was able to find ways to reorientate herself from an unfamiliar starting position. She needs to do a lot of work to get used to the cane, but she is able to follow his instructions reasonably well with it. So he’s going to come back next week and keep working with her, which is good.
She’s shown encouraging signs since those sessions as well. On Wednesday evening she told me that she felt less anxious about him coming round, because he was being so gentle with her, and felt he was giving her a little bit more confidence. So she’s starting to look forward to his visits a bit. And over the weekend she’s been moving around a lot more, feeling more confident about getting out of her chair, exploring the lounge and kitchen, and coming to find me in my study. It’s also good gentle exercise for her, rather than sitting around all the time.
She’s even been out of the house without me for a short while as well, because my aunt came at lunchtime on Friday to take Mum out for fish and chips (having popped in on Tuesday to invite her in advance). And they had a nice time overall, with Mum telling me later that the fish and chips were really good. Her sister still doesn’t understand everything that’s going on with her – and can’t really, as she’s not in her shoes – and she apparently called Mum lazy at one point, which she didn’t like. But she’s still grateful that her sister is paying her more attention than she used to, and appreciates she doesn’t understand. And while they were out, I went to M&S, as I needed to get various bits and pieces, including some fish and chips for myself that I had after I got home.
Other Contacts
Apart from all that, a lady from the local carers community rang to do a follow-up review about how I was doing. So I was happy to bring her up to date with what was happening with Mum and that I was doing more for her. She urged me to chase up the adult social care team about my carers assessment that they still haven’t given me, as the assessment that will be happening at the end of the reablement process for Mum will be for her ongoing care needs, not necessarily the support I need, which I’d hoped might be included. So I have to make sure my assessment is in place too. She suggested daycare centres as a possible option for Mum, for when I go out, but of course when I mentioned this Mum hated the idea. Mum isn’t used to socialising with unfamiliar people, so isn’t at all keen on the idea, understandably. A sitting service would be the better option really.
We’ve had contact with various other people too, giving us more positive developments:
- We got a letter confirming our next telephone appointment with the mental health doctor. And she also sent us a copy of the letter that she’s sent to our GP surgery, explaining what happened on her recent visit, which showed she understood what we had been telling her. She was very complimentary about Mum too.
- We received a letter saying that Mum has been referred for physiotherapy, which is very good news as I thought I was going to have to do that. The waiting list is 6-8 weeks, but that’s fine, as Mum will be in the cast all that time anyway.
- A lady from our local disability support service got in touch to book a home visit to see Mum next week, although it now looks like Tube strikes are going to force her to change the date. But it’ll be good to see her again whenever she can make it.
- My friend James has offered to meet up with me in a couple of weekends time, which will be good, although obviously it depends how Mum is that day.
- My mate Simon rang me for our monthly catch-up chat on Tuesday evening, which was nice as always.
- I rang our salon and booked myself a haircut for my day off next Friday, which will be good. Mum needs one too, but it’s not easy to get her there at the moment.
Shopping
I also had a couple of items delivered from Amazon this week to help Mum. I bought her a raised toilet seat for the upstairs bathroom which, combined with a safety frame with rails I also bought recently, means she’s now finding it a lot easier to sit down and stand up when using the toilet during the night and early in the morning. And I also got a commode so that she doesn’t have to go out in the rain to use the toilet in the outhouse during the daytime. She doesn’t use the upstairs bathroom during the daytime at the moment, because it’s a lot of effort for her to go upstairs in her current state, so she only goes up there once a day, when she goes to bed at night, unless there’s another urgent reason. So the commode might be useful, and may well become more so in the years ahead.
Sunday, September 14
As with last week, things have been mixed for Mum, but there are continuing to be positive signs of recovery.
Sleep & Melatonin
Firstly, we’ve now got an increased dosage of melatonin for Mum, as she’s still not been sleeping properly at night. During the week it had become a habit for her to get up at some point to tell me she can’t sleep, even though there’s nothing I can do about it. She usually did it while I was awake and watching TV downstairs, but on one night she came into my bedroom at about 2:30am while I was trying to get to sleep. So the 2mg dose of melatonin she was trying clearly didn’t make any real difference. It was making her a little bit drowsy, and was possibly making her sleep for an hour if she was lucky, but that’s about it.
So the mental health doctor rang on Thursday as promised, and I updated her on how Mum’s been doing. We agreed that Mum could try doubling the dose of melatonin to 4mg to see how she gets on, and a lady from the mental health team then delivered the prescription the next day, which I had to pick up from the pharmacy on Saturday as they had to order it in. But we’ve still got a few of the 2mg pills left, so Mum is just doubling up on those to finish them off before starting on the 4mg tablets.
It’s very early days, therefore, but over the last few nights the pills have been helping Mum to sleep a little bit more. Still not long enough, but an hour or two more than she was getting I think. . She also seems to be a bit more clear-headed when she wakes up from sleeping at night, instead of fuzzy and confused, and she’s not having any side effects yet. So we’ll see how it goes. The doctor will ring us in 3 weeks time in early October to see how Mum’s doing, and maybe we can increase the dose further then.
Panic & Confusion
During the day, meanwhile, Mum is still sometimes having panic attacks when she wakes up in the lounge as usual. From what she tells me, it seems to be particularly bad if her vision is either totally black or a very dark green, although it’s not clear why the green freaks her out more than any other colour. In those situations I’m still encouraging her to breathe slowly and deeply to calm herself down, as I’d started doing last week. It takes her a while to settle into it when she’s in a panicky state, but it does seem to help. Rather than getting herself into a spiral of ever-increasing anxiety, it starts to make her a bit calmer instead, slowly settling the waves of panic that go through her. It’s a bit like being in a speeding car without a brake, so the only way to slow down is to take your foot off the accelerator and let it gradually ease down.
Even if she’s not panicking when she wakes up in the lounge, she can still occasionally be confused if she’s had a deep sleep. Monday evening was a case in point, because she pulled her armchair all the way across the room to the kitchen doorway – and even though I put it back and got her to sit down and relax a bit, she got up a few minutes later and did it again! It then took her a while to wake up more fully, after which we eventually had dinner, 2 hours later than we normally do. She didn’t do anything like that for the rest of the week though. That kind of behaviour tends to be sporadic rather than frequent.
Mobility & Therapists
On the plus side, when she’s awake during the day, Mum has still been confident enough to walk around the lounge and the kitchen to keep herself mobile, and she finds her way into my study to say hello to me while I’m working.
Better still, she’s now going to the toilet by herself again, for the first time in a month. She’s got enough dexterity and strength back in her arm to enable her to pull her trousers down and up again by herself, even if it is a still a bit awkward, and she’s got the hang of the route to and from the outside toilet, so that’s given her some dignity back.
She’s also said to me this week that she feels like she’ll be able to get back to normal, which she hadn’t believed would be possible for quite a while. She’s definitely got the determination to get better so she can do more and help out again, which is reassuring for me as well as for her.
The occupational therapist from the frailty team has also continued to work with Mum on her long cane training, coming 3 days in a row again, from Tuesday to Thursday. She is still resistant to using it outside of their training sessions, as it’s such a new skill for her, and she’s so used to just using her hands to feel around. But he’s gradually teaching her little tricks that are making her a bit more confident with it. For instance, she was struggling to walk in a straight line, so he’s been teaching her to line up her feet and the cane with her nose and her belly button in the centre of her body.
Then on Sunday she also had her first visit from a physiotherapist. Given that we were were told the waiting list could be up to a couple of months, it was a bit of a shock to get a phonecall on Friday to arrange the appointment, and also quite a surprise that they work at weekends. But evidently because she’s elderly and has been having falls, it’s made her case a bit more urgent.
So a nice lady came round and checked Mum’s blood pressure, leg strength and balance, and had a look at how she stands, walks around, gets up and down the stairs, sits on the toilet and gets into bed, as well as asking various questions. And as a result she’s going to make a few referrals to help Mum – one for a physiotherapist to come round and do a few sessions of balance exercises with her, one to the podiatry team to look at her toenails as they are in a bit of a state, and one to occupational therapy to install rails by the toilet and her bed. So that was very useful, more so than we were expecting.
And apart from those therapists and the carers, another visitor we had this week was a man from the care agency, to do an assessment of her condition and needs, so that involved lots of questions. I don’t think it will lead to anything, as it’s not the care needs assessment she’ll be getting later, but I think it’s just useful for their records. He also dropped off a folder of information about the care agency, including a copy of the detailed information that the hospital had given them when Mum was discharged. It turns out we should have had that at the start of this care process!
My Tasks & Outings
As for me, I’ve also been busy this week, apart from supporting Mum and working. I had Friday off work, so I went and got my hair cut in the morning, then popped down to the pharmacy with Mum’s prescription, but they had to order in the pills for the next day, so I left it with them. Then after we’d eaten cheese rolls for lunch I had a productive afternoon of cleaning, by using the washing machine’s auto-clean programme, descaling the kettle and cleaning the toilets. Plus I cooked our steaks for tea and did the washing up afterwards. So I finally got to relax properly in the evening, and by getting those various jobs done it meant the rest of my long weekend could be quite leisurely, relatively speaking.
Then on Saturday I did some food shopping in M&S in the morning and picked up Mum’s prescription at the pharmacy, before going out to meet my friend James for fish and chips, so it was lovely to have a catch up with him. He kindly came down to my local tube station to save me travelling too far, so I was able to take him to the fish and chip shop that Mum and I like (the one she went to with her sister last week). So I had a very generous and tasty portion of cod and chips, while James went for a saveloy.
We continued to sit there and chat for a while after finishing our food. And then Mum rang me, just over an hour and a half after I’d left the house, to say she’d had enough of being on her own and wanted me to come home. After all, I’d been out for over an hour to get my hair cut the previous day, and then on Saturday I’d been out for an hour and a half to get stuff from M&S before meeting James, so it had all added up for her a bit, bless her. So while I didn’t rush back immediately, as I knew Mum was safe and was happy to chat to James for a bit longer, we didn’t leave it too long. And because we weren’t far from my house, I invited James back to say hello to Mum, which she appreciated.
So it was nice to get out and meet a friend again. And I’m starting to feel like I could try to gradually condition Mum to get used to me being out of the house again, now she’s starting to be a bit more confident and independent. Not too much at once, but even if I can just go for a walk for an hour or two at the weekends to begin with, that would be really nice.
Conclusion
So that’s how things have been going in the first half of this month. I’m pleased and relieved that Mum’s confidence is growing, and that she’s getting help from a variety of people now. So I’m keeping my fingers crossed that we continue moving in a positive direction in the weeks ahead. I’ll keep you posted with another update soon!
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