Having recently explained the complex situation regarding my mother’s declining physical and mental health, and the impact on my own wellbeing, I’m going to document how things are going as time goes on, to keep you up to date.
It seems easiest to do this in journal form, which I think will be more insightful anyway, as things keep changing so quickly that trying to do a summary roundup every so often would be rather difficult. I’m already keeping a personal diary anyway, so rather than writing something new, it’s much easier for me to just adapt my journal entries for public viewing, taking out details that are private, intimate or irrelevant – just like I did for my Devon journals from the early 2000s that I posted during lockdown, which proved to be surprisingly popular. It also gives me the flexibility to post whenever I need to, depending on how much there is going on.
To start with, therefore, I’m going to share more detail about events from earlier in the year, so you can get a sense of how things have progressed up to this point. This will help to add context to my previous trilogy of posts as well – so please do read those first if you haven’t already, to fully understand what I’m talking about here.
The months of January to April weren’t without their issues, as Mum did have a couple of falls in that time, which led to us having telecare installed. But it was in May that things really took a downward turn. So I’m just going to quickly summarise the key points from the first 4 months of the year, and then share my journal for May. In subsequent posts over the next few days, I’ll then take you through June, July and August so far.
So I hope you find it interesting, and it gives you a sense of how hard it can be as a carer for a loved one who is struggling and acting in unpredictable ways. As strange and difficult as it is to share such details sometimes, I think it’s important to be open to raise awareness and to let others know they’re not alone, as it’s nothing to be ashamed of.
Contents
- Early 2025 Summary
- May Journal
- May 4 – Another fall & sleep Issues.
- May 9 – Mum’s recovery, emotional dependency & visions.
- May 11 – Meeting a friend, Thames walk and another fall.
- May 16 – Sleep issues and my haircut.
- May 18 – Moving Mum’s bedroom.
- May 23 – Sleep, panic attacks and rails.
- May 25 – My walk and Mum’s sleep.
- May 29 – Mum’s haircut and another fall.
- June 1 – Morning panic attacks.
Early 2025 Summary
January
On one Saturday morning, despite the cold weather, I’m able to walk Mum to the hairdressers for our haircuts and then home again (it’s about a 30-minute walk each way at her pace). She’s also gradually getting used to operating our new cooker, as the controls are slightly different to the old one. She’s pleased I can use it myself to cook meals too, as one of her worries is how I’ll look after myself after she passes away.
We also finally get her a referral to Moorfields, which will be the first time she’s been seen by an eye specialist in over 20 years! Too little too late really, but better late then never, as they can still help with some issues in the future e.g. if her pressure gets high and causes discomfort.
As for me, I buy myself a new coat in M&S, have a few nice walks, and sign up to a group called Spice Social to meet new people.
February
I meet several friends during the month, including visits to the cinema, plus I visit Kew Gardens for their Orchid Festival (as discussed in my February Favourites). I also take Mum to the Moorfields clinic on the bus, and she’s very anxious about being in such an unfamiliar place, so keeps asking me not to go anywhere and leave her alone (which I wouldn’t do anyway).
However, on the 21st, she then falls in the lounge when trying to take her lunch plate back to the kitchen. She’s able to shuffle along the floor on her bottom to the stairs in the hallway and use them to get herself up, but her bottom hurts for a little while after that. As a result, I contact our local disability support service for an assessment because – to quote my journal verbatim – “I’m increasingly concerned for her, given that she has occasional falls and isn’t as confident as she used to be. It’s only going to keep getting worse otherwise.” And in hindsight, I was right.
March
I attend my first Spice Social events and see Michael McIntyre and John Barrowman live this month.
In the first week of the month, however, Mum’s hot water bottle splits in bed, so I have to flip the mattress over to give her a dry side and replace the fitted sheet. She then becomes very anxious for a few nights, calling me downstairs a few times by shouting out or using her Alexa machine, just to reassure herself that I can hear her. She was worried that she might not be able to get up and go to the toilet herself, in case the hot water had burnt her feet a little bit, but she did just fine. It also means that she’s very anxious when I go out to my next Spice Social event, not wanting me to be out too long. I also order her a new mattress, as she needed one anyway even before this incident.
Then on the 14th, while still using her old mattress, she falls when getting out of bed to use the toilet at 4am. She gets up by herself but has cut her left arm badly by scraping it against the side of the bed. I ring 111 and on their advice take her to a local pharmacy when they open. They advise her to go to A&E, but she doesn’t want to, so we patch her up with bandages as best we can at home. And I don’t go out the following weekend, as she wants me to stay in to be on the safe side. The injury does eventually heal itself without any issues over the next couple of weeks.
Mum’s new mattress is then put in place. But she’s still jittery some nights for a while after that, calling out for me occasionally, or coming into the lounge to check I’m in there watching TV. I am able to wean her off that habit – until we have a fault with our Virgin Media services. That cuts off the wifi and therefore renders our Alexa machines useless, which panics Mum as it means she can’t call for me using them during the night. So for 2 nights I bring her old thick mattress downstairs and lay on it in the lounge, getting little to no sleep, while she alternates between sitting in her armchair in the lounge and laying in her bed in the room next door.
She’s also having some very deep sleeps in the armchair in the lounge now. Normally I’m able to nudge her awake at 10pm for her to go up to bed, as that’s the time we try and stick to, so she has a regular routine, but it’s impossible to wake her sometimes so I have to just let her sleep until she’s ready.
In more positive news, we do have an assessment from our local disability service, with some useful outcomes, including a long cane that Mum’s given – although the lady also spots a mouse in the house, so we have to get pest control in to deal with that!
April
This month is quite a positive one altogether. I attend a couple more Spice Social events, meet up with my friend Emily for bowling and go to a couple of theatre shows, as explained in my April Favourites. Mum doesn’t like being on her own, but is happy for me to go out as she doesn’t want to hold up my social life.
Mum is also in a more positive mood and we discuss work that needs doing on the house, plus we get our Virgin Media connection repaired, and I then get it upgraded, which is something I’d been meaning to do for a while. I also get some other little jobs done at home.
Telecare is also installed, so that she has a pendant alarm to wear in case she has a fall or any other type of emergency, and they also give us detectors for smoke and carbon dioxide that can also trigger the alarm if need be. She remembers to put her pendant alarm on every single day after that, until one fateful day in August, but we’ll get to that later…
May Journal
Sunday, May 4
Another fall & sleep issues.
Poor Mum’s had another rough week. She’s been gradually getting rid of the cold I had given her, but she’s had other issues as well. She’s been getting a bit restless, for instance, wanting more to do than just chores – which is a good thing. So I suggested we could perhaps try doing crosswords at lunchtimes or in the evenings, and bought a couple of Daily Mail books off Amazon, so we’ve started having a go at one of the giant crosswords bit by bit, which we used to get on Saturdays many years ago. We only do a few clues at a time, but she wants to keep her brain busy and misses doing them.
August Update: We didn’t continue with those crosswords for long, as they didn’t really hold her interest enough, and her mind was anxious about other things given subsequent events.
We’ve also come to accept that, instead of trying to stick to a routine by waking her up when she’s sleeping, we just need to let her sleep when her body wants to, even if that means having tea later, or if she stays sleeping in her chair in front of the TV well beyond 10pm. As long as she’s getting up at the same general time, having her meals during the day at roughly the same times, and goes to bed at the end of the day, it shouldn’t mess with her body clock too much, we’re hoping.
In addition, it’s become apparent that she gets confused and panicky after waking up if there’s noise going on. It’s particularly bad when she’s listening to football commentaries, as all the crowd noise and talking overwhelms her. So when she was fast asleep in the chair at 10pm on Wednesday night, I quietly came into the living room, turned the radio off, and left her there. She then woke up after a couple of hours deep sleep, went upstairs to the toilet, and then went to bed properly in her bedroom and slept some more.
After sleeping soundly on Wednesday night, she was much more her normal self on Thursday – only to then fall over again. There’s a tile near the door in the kitchen that’s just ever so slightly higher than those around it, because it was difficult for our builder to get everything perfectly flat due to the old flooring. While the rest of the kitchen had concrete, the section by the door was a piece of wood, covering up a spot where steps had once been. So it could be that she’s catching her foot on that particular tile, though I can’t be sure. To be safe though, I ordered a runner mat to extend from the doorway up to the edge of the cooker, with a non-slip base, and have laid that down from the kitchen doorway, so hopefully that will reduce the chance of tripping there.
August Update: Touch wood, Mum hasn’t tripped in that area since the mat was put down.
Anyway, Mum got up pretty quickly after the fall, and got around for the rest of the day fine. And when she went to bed, she was able to lay down without any problems. But her back then hurt quite a lot when she tried to get up again. So she panicked, which made me worry. So I bought one of her armchairs from the living room into her bedroom, and she sat there, which helped a bit. But because she was quite worried that she wouldn’t be able to move about much and get upstairs to the toilet, I rang 111 and we went through all the questions with them, and ultimately the answer was just to keep an eye on it, which wasn’t really a surprise.
I gave Mum some Ibuprofen though, but even before that had had any chance to kick in, she was able to go upstairs to the toilet by herself anyway. Indeed, she tried it a few times during the night just to reassure herself she could do it, and made sure she could move about both with and without the aid of our serving trolley. Then I moved her chair back into the living room so she could try and sleep in it there, being in a more familiar place, as clearly laying down in bed wasn’t the best option for her.
She didn’t get any sleep on Thursday night though, meaning she found Friday very difficult. She wanted to sleep, but her body wouldn’t let her, knowing that she should be awake given the time of day. So she wasn’t very focused. She did get some sleep during the afternoon, but she woke up at one point in a really confused state, and tried to move her chair around the room a couple of times, and also knocked her metal tray and the fan off the dining room table.
She didn’t have any tea either, so I just had a ready meal we’d bought in our Sainsbury’s shop that morning. Mum dropped off to sleep in front of the news on TV soon after that though, so I turned the TV off, went upstairs and left her in peace – and she slept for a solid 3 hours.
She did eventually try going to bed later on, though she struggled to stay in there for too long, so had to come and sit in the living room, where I was watching TV. I stayed there to keep her company, and because that helped her to relax, she nodded off in her chair. So I just turned the TV off and went upstairs to bed myself.
On Saturday morning she was then more her normal self again. She also told me that she’d managed to go back to bed and have a bit of sleep. So all of that sleep really helped her, and she was able to stay awake the whole day. The pain wasn’t affecting her either, and she only had Nurofen again in the morning and evening to keep it at bay. So in the morning I cut and filed her toenails down for her, and then we relaxed for the rest of the day. I didn’t go out – having already cancelled my Spice Social meal that evening – just to be on the safe side. So we had our steak pies for dinner, and then for tea I had chunky cod and chips while she had hot cross buns. And during the afternoon I used our spirit level and a marker pen to help me put up the sticky backing for the shower racks I’d bought a little while back.
That night she then went to bed, but after a while felt restless and got up again. It’s the action of turning to get out of bed that makes her back hurt though, and it takes a little while to subside, so by getting out of bed she gets all panicky again. So I was able to catch up with Doctor Who, thankfully, but eventually she wanted me to go up to bed so she could have free rein to move in and out of the living room without disturbing me. So I went up to bed again, not expecting her to get any sleep.
When I came down on Sunday morning though, it soon became apparent that she’d had some sleep, as she was more focused and calm than I was expecting. She didn’t know when she slept or how much she got, but I’m glad she got some. So I trimmed and filed her fingernails this time, we had fishcakes and chips for dinner, and then again we relaxed during the afternoon.
She dropped off to sleep while listening to the football, so I turned it off and left her to it. She slept for a good three hours – and it would have been longer if some councillor bloke hadn’t rung the doorbell to give us a leaflet and his contact details. But still, the three hours did her good. And that evening I slotted in the shelves in the shower, on the hooks I’d stuck up the previous day. They’re fairly level and a good height, with the lower shelf in particular much easier for Mum to get to, without being too low for her to knock her head on it.
She was still restless that night, but didn’t get into so much of a panic, and spent slightly longer periods in bed before getting up and moving about. So I was able to watch Have I Got A Bit More News For You and a few Doctor Who extras, and then went upstairs and filmed my April Favourites video, which I’d started to think I wouldn’t be able to do.
So it’s been a strange week, and it’s a shame I haven’t been able to go out over this bank holiday weekend after all. But if we can keep letting Mum get some sleep without being disturbed, and if her back pain can ease off, provided she doesn’t fall over again, hopefully she’ll start to feel better.
Friday, May 9
Mum’s recovery, emotional dependency & visions.
Mum’s continued to make slow and sometimes difficult yet steady progress this week.
She had a good day on Bank Holiday Monday, having an hour’s nap in the afternoon but otherwise staying up for the rest of it. And I stayed in again of course. So we sorted out some bits and pieces in the house, and she then relaxed for the rest of the day, during which I was able to edit half of my April Favourites video. She was still restless that night, getting in and out of bed, but wasn’t spending so long out of bed each time compared to previous nights, and not sitting in the armchair at all to recover. She also said that her back wasn’t hurting as much as it had been.
I’m not sure if she got much or any sleep after I went to bed though, as although she started off ok on Tuesday morning, it quickly became apparent that she was very tired and sleep-deprived, and really struggled to get through the day. I wasn’t too with it either, and with tending to her fairly regularly I couldn’t focus much on my work. So we didn’t have dinner that evening, as Mum ended up climbing into bed at 6pm, calling me to give her a hot water bottle at 7pm. And then after I’d done some more editing of my April Favourites video, i went to bed about 11pm, because I was tired and it became apparent that Mum needed to hear me in my bedroom above her to help her settle. So we both had very early nights compared to what we normally do.
It paid off though, because we were both feeling much better on Wednesday and were able to follow our normal routines. And the same applied on Thursday and Friday. She was tired by the end of each day of course, but she functioned fine for the most part until then. That said, on Wednesday and Thursday evenings she was still calling out for me sometimes when she was in bed, until I went to bed myself. So I went into her room and stroked her shoulder or held her hand for a little while, which calmed her down for a short period, but then she wanted more of it, only stopping after I went to bed so she could hear me walking about in my bedroom above hers.
So we both realised that she was becoming too reliant on that type of contact, and when searching online about it on Friday, it was clear that she was developing something called emotional dependency. I had been touching her gently during the day when speaking to her as well, in the hope that it would help curb her visions of me, so that probably wasn’t helping. So on Friday evening I set up an Alexa response if she wanted to ask it where I was, and I also gave her a teddy bear I’ve kept ever since it was gifted to me some time back, and that really seemed to help her settle. I was also able to publish my April Favourites on Friday night, so I’m glad I got that out of the way in the end.
Talking of Mum’s visions, there have been a couple of developments on that front this week. Firstly, I got a response from Judith at the Esme’s Umbrella charity for Charles Bonnet Syndrome, who passed on remarks from their medical adviser, saying that while he hadn’t heard of voices triggering the person speaking in hallucinations, it is consistent with CBS when people are waking up, and indeed it’s common for sounds to influence dreams in general, which further searching online confirms. So it seems that my talking to Mum when she was waking up is when the hallucinations were being generated, as the brain recognised the voice, but added it to her dream-like state, which then became a memory. So that makes sense.
And then when I talked to Mum about it, she revealed that she hadn’t had any visions of me for a couple of weeks, which suggests that my closer attention to her, and being careful not to force her to wake up, has helped to get rid of the hallucinations. Which is good, but as she’d had the visions for such a long time, including a lengthy period before I ever knew about them, she’d formed a sort of emotional attachment to them, having not seen me for years. So without being able to see me any more, she misses it a bit really.
August Update: The visions have recurred sometimes since then, but at the time it felt like we’d got rid of them for a little while.
As for her physical health, by the middle of the week she had stopped having problems getting out of bed, and a related pain in her arm, presumably from a trapped nerve, had also gone. She’s just had some general backache instead, so has continued taking Nurofen for that. That may be a consequence of her sleeping in chairs during the week, or over-exerting herself during the day as she tried to do too much, but we’ll see how it goes.
At some point we’re going to take her for little walks outside the house, just getting her used to being outside again bit by bit. She really wants to get her hair cut, so that’s a good incentive to get her on a bus at least, but I don’t want to push her too much too soon. I have at least booked a hair cut for me next Friday, when I have a day off work. And incidentally, it must be said that my friend Emily – who I do support work for – has been very generous and patient with me dealing with Mum this week.
So Mum’s definitely much better than she was a week ago, and I hope she continues to improve. I still think she should talk to someone though, and it feels like I should contact the RNIB first, as it all stems from Mum’s sight loss. But our local Talking Therapies, being a free NHS service, might be useful as well. And I could probably do with talking to someone to find out the best ways to support Mum really. We’re both experimenting and seeing how we get on, but we could do with professional guidance really.
Sunday, May 11
Meeting a friend, Thames walk and another fall.
I’m happy to say I was able to get out a bit this weekend. Although for a moment I wondered if I might not be able to, as Mum had a panic attack on Saturday morning. It seems that she’d woken from a doze in her chair, got up to move around, and lost contact with things around her. So she was flailing around, without being able to see anything, and it was quiet as well. So she came up to my bedroom shortly after 9am and I had to help calm her down a bit, and got up then instead of having the longer lie-in I was hoping for.
Once she’d calmed down, however, she explained that she doesn’t know why she’d felt like that, as when she’d woken up in the morning, she was the calmest she’d felt for a while. I think having the teddy bear really helped there, as it was helping her to feel she wasn’t alone, especially knowing it was a personal gift from me. And having the ability to ask the Alexa machine where I am in the house helped too. She also said she had taken a bag of rubbish out to the wheelie bin in the front garden, which she hasn’t done for ages. It’s not exactly far to walk, but for her it’s a really big step forward.
So she was still happy for me to go out, and I did so. Having set up a “Where is Glen?” routine for her on Alexa, I kept updating it while I was out, in case she ever decided to use it. She didn’t check it during the day, but she did during the evening, by which point I’d set it to say when I was coming home. And, as I discovered after I got home, that was really helpful and reassuring for her. And she’d been calm and relaxed all day, she’d had no more panic attacks. I had a really nice and relaxing afternoon out with my friend as well, I really needed that social contact.
Mum did well that night too, having another good sleep with the teddy bear. I did hear her talking at one point, and thought she was calling out to me, but it turned out she was just talking in her sleep, so I just calmly stroked her arm and spoke very quietly to calm her down and left. She had no memory of that the next morning. So I was able to stay up and watch Doctor Who, along with the Unleashed behind the scenes documentary, and the latest episode of Have I Got A Bit More News For You, presented by David Tennant. So I went to bed about 2:30am. About 15 minutes before that Mum did open the lounge door saying she wanted to be with me, but I explained that I would soon be going to bed, so she went back to bed as well. So she still wants my attention a little bit, which is understandable, but not as much as before.
Mum was then nice and calm again on Sunday, so in the afternoon i went into London and had a walk along the south bank of the Thames, from Tower Bridge (which I got to see open to let a boat through) to Waterloo.
Mum did ring me a couple of times though. The first was because she’d woken up while listening to the football, and had a panic attack from hearing unfamiliar voices. But I soon calmed her down by reminding her what she was listening to. But then when I got to Waterloo station she rang me to say she’d fallen over again, which got me very worried of course.
When I got home she was actually in surprisingly good spirits though. She had tripped over a cushion that had ended up on the floor, and thankfully it doesn’t look like she’s injured herself too badly. She had a very small cut on her arm, and knocked off the crust of a previous injury on her knee, but was otherwise ok for the rest of the evening. She had chip butties for her tea while I had lightly dusted cod fillets from Sainsbury’s with chips and bread and butter, so she still had a good appetite. She did doze off a bit while watching Countryfile, and was thus a bit confused while waking up, but if over time she adjusts to not seeing anything, I’m hoping these confused awakenings will lessen a bit over time. I’d still like her to talk to someone, but I can’f force her.
Friday, May 16
Sleep issues and my haircut.
I didn’t know how Mum would be on Monday morning, but despite it being a warm and slightly uncomfortable night on Sunday, she still got enough sleep to feel calm when I got up. And it turned out to be quite a relaxing day, as my friend and colleague Emily was ill, so couldn’t work after all. So I took the opportunity to pop over to M&S in the morning and get some nice treats.
It was a very warm and stuffy afternoon though, so Mum slept through some of it after lunchtime. Later we had our usual steak pies for tea, and then in the evening she fell asleep in front of Pointless, so I turned the TV off and left her there for a couple of hours. She did wake up enough for me to put her to bed at 9:30pm, and I was pleased to see that she wanted the teddy bear, as I moved him out of the way for her to get under the covers, and she asked where he was, so I gave him to her. I’m so glad he’s helping her to a fair extent. He can’t stop her wanting me of course, but it’s definitely calmed her down quite a bit.
She was better on Tuesday, but again started being restless that night, getting up to be with me in the lounge again, which meant I couldn’t watch Black Mirror as I’d hoped to, as I knew she wouldn’t want to listen to the swearing, violence and sex that comes up in it sometimes. She was still up after I went to bed, but it looked like she got some sleep, as she was ok during Wednesday as well.
She had another bad night on Wednesday though, calling out for me at regular intervals. At one point I read her a bit about Non-24-hour sleep-wake disorder (N24SWD) that I think she might have, having been researching online, and played an old episode of the BBC’s In Touch programme that talked about it.
So I don’t think she got much, if any, sleep after I went to bed, because she was quite sleep deprived on Thursday. Not as bad as the other week necessarily, as although she did nod off during the afternoon, she was able to cook and eat dinner, and we did do our online shopping in the evening. But it wasn’t without its hurdles.
When she woke up during her afternoon nap, she somehow managed to push or drop her audiobook player on the floor, as she didn’t have a clue what she was doing. It’s heavy and has non-slip feet, so she couldn’t have just knocked it off. So when I was dishing up the dinner, I raised my concerns with her, that this was the second time she’d woken up and pushed things on to the floor (like she’d done with her tray and fan a couple of weeks ago), and she got irritated with me for going on about things.
So that made me feel upset, just like I had when she’d snapped at me once last week as well. I know it’s just when she’s in a state of tiredness, but seeing her suffering is hard enough, without her scolding me as well. So I did cry a bit in private away from her, like I had done the other night. It’s not like me at all, I know, I hate feeling like that. So I asked her for a hug, like we’d done the last time, and she made it clear that she liked me going on about things, because she likes me talking to her. So we did talk for well over half an hour. Well, I did most of the talking about how I was feeling, as Mum said herself that she’s not used to talking about things, but it was still a two-way conversation and it did really help to reassure me. So I felt better after that.
On Friday I had the day off work, though I still had to get up early to bring in the Sainsbury’s shopping of course. I wasn’t sure if Mum had got much sleep during the previous night, as once again she’d been getting out of bed feeling restless, but as Friday went on she seemed to be ok. Not fully with it, but not too bad.
So I was able to go out and get my hair cut at noon, which was good. I talked to the hairdresser about what had been going on as he did my hair, which was nice to get out of my system, and we chatted about other nicer things too. Mum and I then had lunch, after which I just relaxed in the afternoon. Mum evidently had a little doze, as she woke up a bit panicky mid-afternoon, but rather than guiding her I prompted her to think about where she was and what she was feeling with her hands, and she soon found her way around, and was able to prepare the steak to cook it for tea. So I think I need to be a bit self-disciplined and prompt her to think about things, rather than just guiding her, because she’s relying too much on that. If I can remind her that she can figure things out herself, that will surely help.
Mum then slept surprisingly well on Friday night. She nodded off while listening to the football commentary on the radio, which I discovered when she started talking to herself, so I turned it off and left her there about 9:30pm – and she didn’t get up until 1:15am! That’s the longest she’s ever stayed asleep in the chair. She needed a bit of help to find her way out of the room, but once I’d got her to the stairs she went up to use the toilet, then went to bed, and stayed there without calling out to me or getting up to walk around.
Sunday, May 18
Moving Mum’s bedroom.
This weekend began with Mum coming into my bedroom at 5:30am to say she was a bit lost – although clearly she wasn’t as she found my room, but had just got herself in a bit of a panic. So I took her downstairs and helped her reorientate herself, which she did fairly quickly and made herself a cup of tea. Then I went back to bed for another few hours, getting up around 10am myself. She initially asked me not to leave her alone, but I explained I’d gone to bed late as usual and still needed some sleep myself. I’m glad she still respects that at least, although I hope she doesn’t get into the habit of waking me in the early morning!
So after I got up on Saturday morning and had ham rolls for my late breakfast, I offered to take Mum for a short walk, and we took her down to the bottom of the road and around to the corner of the next street. She didn’t want to walk any further than that, just because she was feeling a bit anxious, but walking there and back is still the furthest she’s walked in a long time, which is great. It gives me confidence that we’ll be able to take her to the hairdressers on Tuesday, provided she doesn’t fall over again, as we’ll be able to get her to the bus stop and catch a bus down there. Having shorter hair will help her to feel better.
Anyway, after we got back and Mum had fishcakes for lunch, I went out for an afternoon walk. I was expecting Mum to ring me in a panic at some point, but she didn’t, and after I got home she explained that she had panicked a little bit when waking up and hearing the football, but had resisted calling me, so that’s good. Anyway, on my way home I went into M&S, so I was able to bring back plenty of goodies too, including some of their Belgian chocolate truffles for her and a trifle we could have for afters. So she was happy with all that, and continued to be calm during the evening.
She did get anxious after she went to bed though, calling out for me again, not wanting to be alone and not wanting me to forget about her. And though I did come down to watch Doctor Who on TV, it was interrupted by her coming in and out of the lounge. She had been watching Eurovision earlier but had been practically dozing off by around 10pm, so I had gently got her to go to bed, but in her tired state she had got angry with me for it. But once she’d been to the toilet she apologised and we hugged over it, and then she apologised again later for being a nuisance.
We then chatted on and off a fair amount, in her bedroom and the lounge depending on where she was, and she revealed that she never liked sleeping in the front room downstairs. Her bedroom when she lived here before had always been the back room upstairs, where my study has been since we moved in. So I told her that I could swap them round and she liked the idea. And I did finish Doctor Who in the end incidentally, it’s just that a 45-minute episode took about 2 hours! Shame really, as it was a very good one, with Mrs Flood revealed to be the Rani at the end.
Mum didn’t get a lot of sleep on Saturday night after all, as I left her to snooze in front of the TV. So on Sunday she was a bit tired, but we did go out for another little walk after I’d had my lie in and eaten my ham rolls. We just walked down to the bus stop so she could get a feel for how far that was. Then I hung around while she did her lunch before I popped out for an afternoon walk.
Mum rang me around 4pm though in a panic, because she’d got herself lost and couldn’t find whatever it was she was looking for (I never did find out). Despite my attempts to get her to breathe, she was hyperventilating and almost crying. So I got her to turn the football commentary off, as that was overwhelming her yet again, and that helped to calm her down a little bit, and I advised her to sit quietly until I got home. Of course, when I get home, she’d calmed down a fair amount, as I knew would be the case, and she even had the TV on.
So we chatted again about swapping my study and her bedroom, and she was happy to give it a go. So I moved her bed and bedside tables and a chair upstairs, bringing down my computer table, the computer and a chest of drawers. So there’s still other stuff to bring down, but that’s the most important stuff.
Mum hadn’t asked to swap it over before, because she hadn’t thought it was possible. And indeed, when we moved in, it wasn’t possible. I needed to be upstairs because of the wired connection that was installed up there to work with my old employer’s secure network. But now that’s gone and I’m just working for myself on my iMac with Wi-Fi, I can be anywhere. And it does actually make sense for us both to be downstairs during the day, and then both sleeping upstairs during the night. So we’ll see if it helps Mum a bit. It’s certainly worth a go at this point. It’s not going to cure her, but if it somehow helps her to sleep better, that would be great at least.
Friday, May 23
Sleep, panic attacks and rails.
I’m hesitant to say this for fear of tempting fate, but it feels like we’ve turned a corner with Mum this week. Not perfectly by any means, but she’s definitely been more relaxed since having her bedroom upstairs, no longer having panic attacks during the night and calling out for me, and within a few days she was sleeping for a few hours up there each night. She also hasn’t taken any painkillers for 4 days in a row, which is good too.
She’s still coming down in the middle of the night to have a cup of tea, and either going back to bed again or just staying up. But she’s never in a panic when she does so, and I’m not having a go at her for doing it now. And after chatting to her it turns out she’s never had a long night’s sleep. Even though she never used to get up during the night, it transpires she just kept laying there after waking up when she was in her old room. And she’s definitely felt more rested in the mornings and functioned better during the daytime this week. I guess she might even have something I’ve read about online called Short Sleeper Syndrome, which isn’t harmful and lasts throughout a person’s life.
It’s just taken me a little while to get used to her getting up at night, as I like being downstairs watching TV by myself. She doesn’t mind me sitting and watching whatever I want to, but I can easily go next door into my study to watch things on my computer if need be, and I will still do that for certain things like shows involving swearing, violence, sex, etc she won’t like. Perhaps I’ll even get a TV of my own in that room at some point, that would be quite nice.
She is still nodding off during the afternoons though, and on Thursday she had a panic attack when she woke up as her vision was completely dark, and it took me a good half hour to get her to relax. But I found myself being a bit stern with her sometimes, as I wanted to get back to work, which clearly wasn’t helping. Likewise, that night we tried doing the shopping in the front room downstairs, now it’s my study area, but she soon felt like she hated being in there, and when I went into the kitchen to sort out a drawer in the freezer, she got into a panic being on her own, to the point where she pushed my computer off the desk in her attempt to get out of the room. Thankfully it was unharmed though, perhaps cushioned by my chair on the way down, and being held back by the cable it was plugged in with.
Anyway, during all of that I also discovered that rubbing her back really helps her to calm down, which according to the internet apparently stimulates something called the vagus nerve, which helps to relieve stress. So when it sounded like might be about to have another panic attack on Friday afternoon, I used the same technique before it kicked in and the back rubbing calmed her a lot quicker.
Another good thing is that on Thursday a guy arrived to install new grab rails for Mum – one on the landing at the top of the main staircase (as she already has an extra rail on the staircase itself), and then railings that span from the bathroom to her bedroom so she can safely traverse the smaller set of 3 steps along the way. So they look good, and they have been helping Mum to feel safer.
Saturday, May 25
My walk and Mum’s sleep.
After a relatively good week for her, the big test for Mum was then on Saturday, when I went out for another of my walks. I did have a Spice Social walk booked but I cancelled it, partly because I would have been out too long for Mum to cope with straight away, but also because the weather wasn’t very good in the morning anyway. But as it had cleared up by the afternoon, I went out for another nice walk, and then went to M&S on my way home.
So I was rather worried as to how she would get on, but she didn’t call me at all this time, and when I got home she was fine. She said she had dozed off and woken up again while listening to the football, but it hadn’t been too loud and she hadn’t gone into a deep sleep, so it didn’t put her into a panic. I had also experimented with giving her a big hug and a back rub, while also reassuring her that I would be coming back, before leaving the house, which may have helped to settle her as well, so I’m going to try and do that more.
On Saturday night we also experimented with sending her to bed earlier, as she was trying to watch the Chelsea Flower Show on iPlayer but just couldn’t stay awake. So we’re starting to think that, as she tends to nod off around the same time each night, she should actually go to bed when her body is telling her to. So she was in bed soon after 9pm, and still didn’t come downstairs until around midnight, when she had been doing it before. So she only got a few hours sleep, even though she wasn’t anxious about anything this time.
So on Sunday I stayed in, with the intention to help Mum sort things out to put in the chest of drawers in her bedroom, and help her shop online for some front-fastening bras, as I also learnt this week that she doesn’t wear them because she can’t do them up in the back. However, while she was alright when I got up after my morning lie-in, and we had nice steak pies for dinner at 1pm, she then went off to sleep in the armchair in the afternoon, and then felt cold and tired and wanted to go to bed in the evening, heading upstairs around 7pm. She hadn’t gone off to sleep much during the day on Saturday, and only had a couple of hours that evening, so I think she needed to catch up on quite a bit! She eventually surfaced again around 11pm, coming downstairs for a cup of tea. So we didn’t get anything done like we’d hoped to. That said, however, I did do an Amazon order on Saturday night, so various items did arrive on Sunday, another reason for me staying in.
So while there have been blips where Mum has struggled, and there are still issues to sort – her navigating the living room seems to be the main one – overall it has been a better week for us both. She’s so much better at night time, and thus also in the mornings, and I’ve learned how to calm her down better when she starts to get a bit panicky. She still needs to talk to someone, but I don’t want to start arranging that until later in the week. She has her haircut booked on Tuesday, so we’re really hoping we can get her to the salon, as she’ll feel much better about herself once that’s done. I’ve got that day off, and indeed also have Monday off, as it’s bank holiday week, so I won’t have to work until Wednesday, which is nice.
Thursday, May 29
Mum’s haircut and another fall.
This week started off in a good way overall. On Bank Holiday Monday we got a few jobs done, as we put some clothes into Mum’s new chest of drawers, and I renewed our postal vote registrations. And Mum only lightly dozed off during the daytime.
But then that evening, when she had been asleep in the armchair for a short while, she fell over next to the TV when trying to find her way out, presumably from trying to turn round when she realised she was going the wrong way towards the windowsill. She did get up quickly though and didn’t seem injured, but it still left me very concerned that she wouldn’t be able to get her hair cut on Tuesday, even more so when she didn’t sleep on Monday night either. She wasn’t panicky or anxious, she just couldn’t sleep, so after going up and downstairs a few times she just stayed in the living room and watched TV.
However, much to the relief of both of us, we did get her down to the hairdresser on Tuesday morning, and without any fuss either. She had a better walking pace going down the street than the last time we went out, and she didn’t get panicky when we used the buses either, which I was glad about considering she hasn’t used one for a few months. I did have my arm around her when we were sitting on the bus, so maybe that helped to keep her calm as well. And after having her hair done she feels a lot better, as it had got very long. The rest of the day was then spent relaxing at home because of the weather. There was a little bit of rain when we were out, but it got heavier soon after we got home, so we timed it perfectly.
Unsurprisingly, Mum had a sleep in her armchair during the afternoon, only to wake up and complain about being cold, so having a hot dinner helped to warm her up. Because she had slept so much during the day, however, she was very restless that night. She tried going to bed, but kept calling me for help every few minutes, be it to go to the toilet, plump her pillows up, have a drink of water, or for reasons she couldn’t tell me because she was in such a daze. Eventually she came downstairs and watched the TV overnight instead, so I had to settle for watching things on my computer again.
It did mean that she was awake on Wednesday morning, but she then fell asleep at lunchtime and woke up in a bit of a panic again. this time calling for her mother for some reason. I spoke to her to calm her down, but again perhaps shouldn’t have done that, because she was in such a daze that she didn’t recognise exactly who I was, and later told me that she thought some man was talking to her. So again I had to reassure her that it was really me talking to her.
She was in and out of sleep throughout the rest of the afternoon too, so I ended up cooking our dinner for us both, which is the first time I’ve had to do that, apart from cooking a pie for myself last week. She did then nod off a little bit in her armchair in front of the TV that evening, but ultimately didn’t sleep during the night.
One hopefully positive thing that did come out of Wednesday, however, was that I got a reply from the GP surgery regarding an appointment about her sleep. So she’s going to have a telephone appointment next Thursday. I would have liked it to be sooner, but we’re lucky to get an appointment at all really. So we’ll just have to try and manage until then.
Mum was a bit better during Thursday, but tried so hard to stay awake that she got a bit irritable in the evening when she was struggling to do the dinner and the washing up. She almost fell asleep when I was sitting next to her on the laptop to sort out our Sainsbury’s order for the next morning. She still refused to go to bed though, instead wanting to have an ice lolly and watch more of the Chelsea Flower Show from last week on iPlayer.
But she soon dozed off and woke up in a bit of a panic, as I knew she would, and I was able to get her to go to bed at 8pm. She stayed up there until around midnight, during which time I sent an email to the Eye Care Liaison Officer (ECLO) at Moorfields to see if he could help us in any way.
Mum was then very restless, as she came downstairs but was in such a daze that she couldn’t really have a conversation or do anything. I took her back up to bed and sat with her for a while, hugging her and rubbing her back, but she still wanted to come downstairs anyway. So I tried to get her to relax in the living room while I watched TV in my study, but she kept coming in and out constantly, making it impossible for me to relax. I eventually got her up to bed so I could watch Taskmaster in peace, but I heard her get up again after I then went to bed.
Sunday, June 1
Morning panic attacks.
This has been a difficult few days. On Friday morning, shortly before I was going to get up, Mum came into my bedroom in a panic, because she hadn’t been able to find her way out of the living room. And she got a bit irritable with me again when I tried talking to her, though we did then have a nicer conversation later.
On a better note, the ECLO from Moorfields I contacted called me up and had a chat, and was really friendly and helpful. The first step is for Mum to have the face-to-face consultation for her eyes that she’s been overdue to have, and he instantly got his admin team to book an appointment for her, so we’re going there on Tuesday 10 June. Then from there he can signpost us towards other support, so that perked up Mum and I.
Mum then fell asleep in her chair in the afternoon for a good couple of hours – interrupted briefly by our electrician coming around unexpectedly to fix the light bulb that had blown in the room that is now my study downstairs, but she soon went back to sleep again. And when she eventually woke up a little bit, she started moving around in a random daze, clearly not sure where she was. And she didn’t even talk to me when I whispered quietly to her in case she was still mostly asleep. So I was able to get her up to bed about 7:30pm, where she stayed for another couple of hours, during which time I cooked myself some fish and chips with some bread and butter, so at least I had a dinner.
She then came down around 10:30pm and had a cup of tea, during which time my aunt also rang me, as I’d tried to call her earlier. So I had a nice chat with her, filling her in about what was happening with Mum, and she said she would pop round when she had a free moment.
Mum then went back up to bed after I told her how early she’d come down. She did call out for my help a couple of times, but not as much as previous nights. So I was able to spend time finishing off the May Favourites post on my blog. I’m not doing a video this month as it’s clearly impractical to do so, and it’s easier to focus on writing for the time being.
When I then went upstairs about 2am, Mum and I ended up having a nice chat for an hour, before I finally went to bed about 3am. I was hoping to be able to stay there until about 9:30am on Saturday morning, but of course Mum called out for me about 2 hours before that, having got herself lost in the living room yet again and then having trouble finding her way around the bathroom to have a shower. So I made sure she could have a shower, then I had one too, before we took her around to the pharmacy just down the road for her Covid vaccination we’d booked – only to be told they didn’t have anyone available to administer it, so we’ll have to go back on Monday. So that was disappointing.
We then came home and I had ham rolls before Mum tried to cook her fishcakes for lunch. It was already becoming a very warm day though, so she soon got frustrated and irritable at trying to find and do things, so I was able to help her with it. She was happy for me to go out for a walk though, so I did. I was still worried about Mum of course, but she didn’t ring me, and after I’d been to M&S and come home, it turned out she was ok.
She did then fall asleep in her armchair for an hour during the evening, then when she woke up I helped her upstairs to bed. I asked her to try and allow me to relax for the evening while I watched Doctor Who, as it was the big finale of Season 2 this weekend, and she did let me to be fair. She did come down while I was still watching it, but she just made herself a cup of tea and sat quietly, and I didn’t talk to her while I watched the episode, the behind the scenes material and Have I Got A Bit More News For You.
Anyway, I did go to bed in the hopes of having a lie-in, but on Sunday, for the third morning in a row, Mum came upstairs in a panic because she’d had trouble getting out of the lounge. So I calmed her down and sent her back downstairs, before I went back to bed, though I didn’t go back to sleep, now feeling frustrated that this had become a new habit of hers. I did eventually get up at 11:30am, and helped her to have a shower before having mine. Then I had ham rolls for my lunch while she had her fishcakes.
I then took a bit of time to relax and think about where I might go for a walk in the afternoon – which wouldn’t have been very far away, as I wouldn’t have got to central London until 3pm given how late it was. But it became apparent that Mum was really tired because she hadn’t had much sleep the night before, and I got her to concede that she didn’t want me to go out, before she then promptly fell asleep in her armchair.
I admittedly felt very frustrated, because I’d got myself dressed and ready to go out. So I spent over an hour on my bed in my bedroom, cuddling up to a toy lion we’ve still got since my childhood, and then letting my mind get in such a state that I eventually burst into tears, and I can’t remember the last time I did that. It’s just been so awful to see Mum decline so quickly, I feel so helpless that I’m not able to fix her and I feel awful that I couldn’t get her help earlier. I know I shouldn’t feel bad about these things, because I have helped her in some ways, and we have been having some positive steps. But it just feels like I’m on edge all the time now and can’t relax at any time of the day, not even overnight, and it’s really running me down.
So I really hope the GP and/or Moorfields can help us, because if we can get her to sleep fully and properly at the right time again, we might be able to start getting back to normal. But we’ll just have to see. It’s just going to be a long wait until the GP appointment on Thursday.
Conclusion
So there you have it, that gives you a good sense of why these last few months have been so rough. Despite some positive steps here and there, overall things seemed to get more and more difficult for Mum, and it was heartbreaking for me to witness.
So I know it’s not the easiest thing to read, but if you stuck with it then thank you for doing so, I appreciate it. And in my next post, I’ll share what happened in June.
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