Welcome to the latest of my journal posts as an unpaid carer, and I’m happy to say that things are continuing to move in the right direction for my mother so far this month. I’ve taken her out in her new wheelchair a couple of times, the reablement care has come to an end so that we can get back into a proper routine, her sleep pattern has improved, and we’ve had another nice mental health appointment. I’ve explained more about all of that in my diary entries below, along with a few other bits and pieces.
In addition, I’ve also appeared on the radio during the past couple of weeks! Back in October I was interviewed by Amelia Hilton for RNIB Connect Radio about my experience of being a carer, in response to the posts I’ve been sharing about it, and it’s now been broadcast and shared online.
You can hear my interview as part of the Good Company Show from November 4, where I also pick a song that means a lot to me, or as a dedicated podcast. So I hope you find it interesting, and thank you so much to Amelia and the team for featuring my story!
I’ve had very kind comments about my caring role from other people as well recently, as you’ll see in these journal posts, which I’m humbled by and grateful for.
So let’s get on with the latest updates, and as always I hope you find it of interest.
Contents
Sunday, November 2
Wheelchair Park Visit
November’s got off to a wonderful start this weekend, as I took Mum out in her new wheelchair for the first time yesterday morning, and she absolutely loved it, even laughing with the joy of it all sometimes, so we went further than we’d initially intended. We walked up to the local park, where we went around the whole perimeter before cutting across the centre to the high street. Then we walked quite a way along the main road and around some side streets we know, before making our way home. We were out for about an hour and a half altogether, and according to my phone I’d walked nearly 4 miles by that point in the day.
Mum felt very comfortable throughout the whole journey, apart from having a little bit of neck pain towards the end, so I might have to look at getting some kind of cushion to support her posture or a headrest, to help with longer trips. And when she got out of the wheelchair and into her armchair back at home, she felt a little bit sick, so it might be wise for her to take travel sickness pills like she does for car journeys. But both the neck pain and sick feeling wore off very quickly. When she goes out in the wheelchair in future, she will get out of it to have a walk and stretch her legs every now and again as well, but this first trip was all about the chair and getting a feel for it.
I felt fine as well, as the wheelchair is very lightweight and easy to manoeuvre, so there was no strain on my back or my arms from pushing it along. I might get some gloves though, to protect my hands when gripping the handlebars for long periods. But like Mum, I just enjoyed the experience, as it was lovely to get out for a walk, and for the two of us to be able to do something together. And above all, I loved the fact that she was so happy about it all. It’s capped off a week in which she’s been in incredibly good spirits in general, which I haven’t seen for ages. And now she’s thinking about other places she could go, so it’s really inspired her.
The novelty might wear off of course, and I’ve forewarned her that we’re bound to come across accessibility issues while out and about occasionally, such as broken lifts on public transport. But she isn’t at all bothered by that. She’s just over the moon that it’s opened up the world to her again.
Apart from that, after we had a bit of lunch I did go out again on Saturday afternoon to do some shopping in M&S, and then I cooked dinner for us in the evening. And today, on Sunday, we’ve had a nice relaxing day indoors. The weather’s been a bit colder today, so that’s made her a bit tired, and she got a little bit confused at one point during the afternoon, but other than that she’s continued to be in good spirits.
Tuesday, November 4
Podiatrist & Physiotherapist
This week’s got off to another positive start, as I took Mum to see a podiatrist on Monday, which didn’t take very long to get to by taxi. The physiotherapist had referred her there out of concern that she might have an ingrowing toenail or be at risk of one. But the podiatrist did a thorough examination, by checking both locations of pulses that we never realised were on the feet, testing whether she could feel sensations, and giving her feet a general look over, before trimming and filing her nails and declaring everything was fine. He was a really nice guy and explained everything that he was doing throughout, knowing that Mum couldn’t see.
Ultimately, her nails have got thicker, but that’s part of the ageing process in her case. It just means that her nails sometimes have to be filed across the top as well as along the front, and they should be filed regularly to ensure they don’t grow too much. We also learned that nails should only be filed with strokes in one direction, rather than rubbing the file back and forth, because the latter increases the risk of the nail fraying and splitting. Sounds obvious when it’s explained by a professional, but it’s the sort of thing that you don’t get told otherwise. So he’s going to send her some information about nail filing, as well as some information about a regular nail cutting service they do at the clinic, if she wants to make use of it.
So Mum was happy with how that went, and we don’t have to go back there again. One clinic she will have to go back to, however, is the fracture clinic, because they’ve sent her a new appointment, which will be in mid-December. And that’s good, because it means they’re keeping an eye on her, and want to make sure that her recovery’s going ok.
Another nice thing that came out of Monday were compliments for me. We had a nice, chatty taxi driver this morning, who expressed admiration for how I was clearly caring for Mum very well. And then the carer who visited after we came home happened to express similar sentiments as well, as she’d seen us returning home from having our haircuts last week, when we were talking and laughing together. So it’s lovely to know that my efforts are noticed and appreciated by others.
On Tuesday Mum then had a visit from the physiotherapist, who was still happy with her balance exercises, and also gave her a couple of simple exercises for her wrist as well.
Carers Emergency Card
I also finally received my Carers Emergency Card in the post – only to find it had no telephone number on it for people to ring, which is the whole point! So I rang them up and the lady who answered went off to ask about it, and came back to say that they’re working on changing the cards, so I’ll be sent a new one. So it’s not been an impressive service so far – first a long wait, then a phonecall where they got my name wrong (at least that’s been fixed) and then being sent an incomplete card! But hopefully it will get sorted eventually.
Sunday, November 9
My Dentist Appointment
After a quiet day on Wednesday, the next big event this week was my visit to a local dental clinic for an assessment prior to them doing my wisdom tooth extraction, which has now been booked for Monday the 17th. And thankfully the staff were nice in there, showing me how to get to each room and then back to reception again.
I first had to have some measurements taken, which involved standing on the footplate of a tall machine that automatically measured my height and weight, and then also took my blood pressure using a cuff I had to put my arm through. Plus it talks to tell you to stand straight, or to relax and not talk. I’ve never seen a machine like that before, so it was quite a surprise that it could do all of that. The nurse also put a clip on my finger to measure my blood oxygen levels as well. And she was happy with everything.
I then had to see another nurse, who had a quick look at my tooth and said it would be a simple operation as it’s already erupted (i.e. broken through the gum). They didn’t have to take any X-rays either, as they already had the images from the previous dentist I visited. She also asked if I was scared of the surgery, in case I wanted what they call conscious sedation (where they inject something so that you really relax yet stay awake), but I said I would be fine with local anaesthetic. While the surgery might feel a bit horrible, it’s the recovery afterwards I’m more anxious about, as it sounds like I might have some bleeding, pain and swelling for a while. But the nurse was quite relaxed about that too, saying it might not be too bad, so I hope she’s right.
So I was in and out of there quite quickly, and Mum was pleased that it went well. She wants me to have it done but is also worried for me too, because she knows I’m a bit anxious about it, and that’s affected her sleep a bit this week.
Mum’s Sleep
Indeed, there are a few little issues that have affected Mum’s sleep a bit in recent days. First there’s the worrying about my dental surgery, although I think I’ve put her mind to rest about that. And she’s also had a bit of back pain, which she feels when she sits on the bed and turns to lay down, and occasionally when she sits down in her armchair. I’m guessing that might be because she’s moving around more and doing more than she has for a long time, so it’s probably not just her arm muscles that need to recover. We’ll see how it goes though.
In addition, it’s slightly unnerved her that she’s overslept by a few minutes on a couple of mornings this week – only by 5 minutes or so, but she’s not used to doing that and is worried in case she oversleeps too long. And she doesn’t like waking up in the middle of the night and then going back to sleep either, even though it’s normal to drift in and out of sleep during the night because of the light and deep stages our brains cycle through. But because she’s got so used to being awake overnight for such a long time, I guess she’s having to relearn what it feels like to sleep properly.
So I don’t think she slept too well on Thursday night, for instance, because she had a bit of a doze after lunch in the armchair on Friday, for the first time in a few weeks. And inevitably, as has become the pattern in that scenario, it caused her to be confused when she woke up, once again accusing me of moving things around in the lounge and lying to her about it, when in reality she’s just a bit lost, and she had another moment of frustrated disorientation in the evening as well. But having a nice steak dinner for tea helped her to settle down, so she was more friendly again, and she stayed awake watching the TV until she went to bed. And she was fine in that regard over the weekend, only briefly snapping at me once on Sunday night when she got a bit confused.
Other Developments
Anyway, earlier on Friday Mum had done very well in the morning, as in addition to making our lunches and washing the bathroom sink, she also managed to make herself a cup of tea for the first time in ages. Her right hand was shaking as she lifted the kettle, and it took her twice as long as usual because she had to take her time, but she did it. So that’s another big milestone, and hopefully she’ll keep trying to do that. We’ve talked about getting her a small kettle, like a travel-sized one, which might be easier for her, but we’ll have to see what’s out there.
Also on Friday we had a call from the lady in the reablement team, and she was pleased to hear that things were going well, in terms of Mum being out of the cast, doing things for herself and getting a wheelchair. She confirmed that we were happy for the carers to stop coming after the 15th, and we also confirmed that we were happy to self-fund our own care going forward so we have full control over it.
My aunt also called that day, offering to take Mum over to the park as she happened to be nearby in the High Street. But when we mentioned the wheelchair, she said she didn’t want to use it, as she wanted Mum to walk for the exercise. She doesn’t understand that the wheelchair can be used to get Mum to the park safely so she could then walk around there, and then sit back in the wheelchair if she gets tired. So Mum decided not to go. Next time my aunt visits the house in person we’ll try to explain it to her a bit better. She’s always out and about and keeping active, and still has fairly good eyesight, so she doesn’t have any concept of what it’s like for Mum.
Weekend Surprise
On Saturday I then popped over to M&S to get some treats for us as usual, and while I was there I had a look at their mashed potato, soups, yogurts, milkshakes and ice cream to see what I might want to stock up on next week to eat after my wisdom tooth removal.
Then when I got home I discovered we’d received some beautiful flowers from a friend we know through the Aniridia Network, who had been really touched by my story
It was a wonderful surprise for Mum and I, so I sent them an email to say thank you, and they replied with a very complimentary message:
“Glad they arrived safely. I really admire you for how caring and committed you are to your Mum’s care and wellbeing. I always thought you were a lovely young man and now I know it for sure! She is very lucky to have such a loving and thoughtful son.“
What with that, and the compliments I’ve had from a taxi driver and a carer, I’ve been very touched by people’s kind words this week.
The rest of Saturday was then just spent relaxing and catching up on some bits and pieces. Likewise we also stayed indoors on Sunday, because Mum wanted to watch the Remembrance Sunday commemorations on TV in the morning and listen to the football on the radio in the afternoon.
Sunday, November 16
Mental Health & Sleep
This has been another good week for Mum. For starters, she had a visit from the mental health doctor on Tuesday afternoon. We had a lovely chat with her for nearly an hour, and she was really pleased that things have improved so much. It also gave Mum a chance to talk to her about how she still gets confused as to where things are sometimes, and for the doctor to reassure her that she’s not going mad and there’s nothing wrong with her mind. It is, as we knew, her brain just struggling to adapt to the loss of sight at her age. But Mum needed to hear it from a professional to be sure, and so getting that reassurance from the doctor really helped to put her at ease.
The doctor is also satisfied that the melatonin’s working, given that Mum’s sleep cycle has gradually improved, so that she’s sleeping at night now and not during the day. And it’s not having any side effects either. So she’s going to write to our GP to ask them to put it on repeat prescription for her, and said if they won’t do it then her team will. So hopefully Mum will be able to take that regularly going forward.
We know it works because we ran out of the pills a couple of days after the doctor visited, and since then Mum has already been much less relaxed overnight. She’s been getting up at odd hours in a state of confusion as to where she is or what time it is, which has led to her trying to come downstairs, or on one occasion pushing over the step-ladder we have by the cupboard on the upstairs landing, so I’ve had to encourage her to go back to bed on those occasions. So the impact of the lack of melatonin at night has been immediately obvious. The brain really needs that trigger to go to sleep.
Beyond that, the doctor will continue to keep an eye on us, which has further reassured us, so she’s arranged a telephone appointment in January.
And in terms of talking to nice people, our friend from the Aniridia Network rang again on Saturday morning as arranged, so we had another lovely chat to her for an hour, and she too was very happy to hear that things were improving for Mum. We haven’t arranged another call yet, as with Mum in a much better state of mind for the time being it’s not quite so necessary. But the lady is very happy for us to contact her to arrange another call any time we like.
Reablement Care Ends
Saturday was a very good day for a couple of other reasons as well, the first being that the reablement carers have stopped coming. Even though they haven’t been great in some ways, their help has been very useful during Mum’s recovery. But after 3 months of that, we’re quite relieved to be able to get back into a routine that suits us, now that Mum’s a lot better.
She’s been gradually getting back into things in preparation for this transition, so she’s now able to dress herself, prepare things like sandwiches and rolls for lunch, do the washing up, clean the bathroom sink, use the washing machine, and put the laundry out on the washing line. It can be a bit slow or difficult for her sometimes of course, because she can’t see and her wrist is still a little bit stiff, but she’s coming along nicely.
She is able to have a shower by herself as well, but only if I’m up and about so I can hear if she needs help. She was going to try doing it by herself on Sunday morning while I was still in bed, but didn’t feel confident enough in the end. Hopefully once we get a more accessible bathroom installed she’ll feel more at ease. And she still finds it very difficult to make herself a cup of tea because of the size of the kettle, so I’ve ordered a small, travel-sized one from Amazon to see if she’ll find that easier. But she also now has the reassurance of knowing that we can get in a carer to help her with certain things. So we’ll see how she gets on in the coming days and take it from there. She’s got so used to having things done for her in the mornings that it’s going to take time for her to readjust to being independent again.
Wheelchair Tube Journey
And then also on Saturday, at her request, I took Mum out for her first ride on the Tube in her new wheelchair on Saturday afternoon, as thankfully we have a station with lifts near home. So we went to Stratford, where one of the lifts was out of service, but it’s such a big station that we found an alternative route to get to the other corridor easily enough. We got out of the station at the Westfield shopping centre and, after finding and using the disabled toilets, we had a little look around M&S, where Mum picked up some of the beef and chicken Yorkshire pudding meals that she likes for the week ahead, as they’re easy to cook and eat while I’m on my soft food diet. Plus we got a couple of cakes as well. And then we made our way home again.
So that was another successful outing, during which she was happy and comfortable all the way, without panicking or getting very anxious, and she didn’t have any neck pain this time. Despite having a travel sickness pill beforehand, she did feel a little bit sick at one point, so we stopped for her to rest for a few minutes, but she got over that quickly. We’ll get some sweets or lozenges she can suck on to try and offset that in future. And we were out for 3½ hours altogether, so over twice as long as our first outing around the park and local streets. So we were very happy with that, even if she was quite tired by the end of it, and she did sleep well that night.
I then went back to M&S today (Sunday) to get some mashed potato, soups and ice cream for myself for the week ahead, to have after my wisdom tooth extraction. And that’s in addition to some soups, milkshakes and ice cream I had delivered from Amazon and Sainsbury’s during the week. It means I’ve got too much now, but I’d rather that than not enough, as it gives me variety in case I get hungry from not having big dinners and therefore have to eat more often, or if I don’t like certain brands. And Mum will help me to finish anything I don’t need in the end. It’ll just be a relief to get it over and done with so I can get back to eating normally again ahead of Christmas.
Conclusion
So that’s it for the first part of this month. The next couple of weeks are going to be a bit more difficult, because of my wisdom tooth extraction and a minor bit of surgery that Mum’s having at Moorfields. But apart from that we’ll hopefully be able to get back into more of a routine again. And once we’re over our little surgical procedures we’re looking forward to relaxing and enjoying the festive season in December, as we want to celebrate getting through the year. But whatever happens, I’ll continue to keep you posted!
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