I look at this photo of me now and marvel at that woman, staring back at me.
I think she thought that better times were ahead, although even with the Covid vaccine boosters, Mum was going to die at some point, her health was going to continue to deteriorate, we were going to continue to lose a bit of her each day, each week, each month. But how long could we go on losing bits of her and for her still to be there? It seemed inconceivable that much more could disappear without it taking all of her with it.
And yet here I am, in June 2024, and Mum is still here. Or there. She still IS anyway. Today she told me that no she is not sad (in response to my question); and then she told me that when she goes out… (long pause here for dramatic effect) …. she always puts a jacket on.
So there we have it, today’s advice is if you’re going out, put a jacket on.
And now, again, I look at that photo of me. I try to detect if there are any signs of what was to come, of me losing lumps of vision in one eye because I have increased pressure on the fluid in my brain? And no, I don’t think there was any indication of it then, I don’t think it had started then, I had no symptoms associated with it.
I miss Mum horribly at the moment, feel her loss so keenly every day again, after some weeks when I hardly thought of her. I have been busier than usual at work, and have found it difficult to find time to focus on anything much else; I haven’t visited her for 2 weeks. In all honesty, I found the visits too hard for a while, so although I saw her, I found no solace in the visit, not even to think that perhaps Mum had some small benefit from seeing me, because it had felt like she hadn’t (she didn’t even know I was there on several occasions). But somehow we seem to have slipped into a new rhythm again, and I was greeted with the warmest of smiles from her again today. And as I left, telling her I’d be back soon, and ‘lots of love’, she repeated back to me several times, ‘lots of love’ without once opening her eyes.
Dear, sweet Mum, I love her so, and just wish we could sit at the dining room table over a cup of coffee again, and have a conversation. Any conversation.
And one day, I will start to remember her again as she was for all those years, rather than as she is now.
***
Thank you for reading this.
Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.
Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.
On Remembrance Sunday I used to take part in the parade at home, attending the church service and then marching up to the memorial.
When I first lived in London I went to the Cenotaph most years, I felt lost if I didn’t mark this day somehow, it’s in my blood. Back in the 80s there were far fewer people at the Cenotaph and most years I would stand just yards away from the royal party. I wasn’t there for them though, it was about family, about tradition, about giving gratitude to those who made such sacrifices.
This year I’m at home and watched the parade on telly, thinking mostly about some of Mum’s stories of the war… when she and Jen lay in the field in Hampshire, looking up at the planes (that was the Battle of Britain), of the time she was at boarding school in Helensburgh and her father’s ship dropped anchor and he came to pick her up. The headmistress was quite in a tizz at this handsome man in naval uniform evidently.
But mostly I think of memories themselves… mum is losing so many of hers and I feel a need to hold on to them, not to let anything go. So today I’ll start stitching this geranium which sits in her conservatory. I love the smell of geraniums.. we always had a couple of enormous fragranced ones in the porch at Fleet Street. And that smell is the smell of a happy childhood, of coming home.
No bonus pics today, but come back later and I might post some of my ancestors in uniform.
The geranium is all stitched now, and I love how it climbs up over the pocket of the smock. The actual geranium is gone. We managed to keep it alive for a year or so after Mum went into the care home… but had left it in her conservatory and through the winter it lost its will to live and that was that.
Mum was rarely sentimental about plants, or anything really. So she would have been quite ok about it being thrown out and making space for something new. I’m less good at this, and still live surrounded by too many things which should have been thrown out years ago, or at least months ago.
I’m sure I will write more another time about the table cloth and crockery that was only used on special occasions. And in all honesty special occasions really just meant Christmas and Hogmanay. And to this day I quite enjoy polishing silver, feeling that same frisson of excitement that we had as we presented our best selves over the Christmas season. Gleamy silver, shiny glassware and all our eyes glittering with excitement, reflecting the lights on the Christmas tree.
And yes, I still have most of the Christmas decorations too. Of course.
***
Thank you for reading this.
Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.
Do get in touch if you have any questions or comments – I love to hear from you my lovely readers.
I’ve been wanting to use bits of old blanket as part of a sewing project for a while. And although we have several old blankets at home I couldn’t bear to cut up the warmth and love, the memories of being snuggled up in them, the knowledge that my foremothers also snuggled into those same blankets as children.
Luckily Ebay provides! No doubt this blanket has kept others warm and safe, and at one level I can hardly bear to cut it up. But I will breathe new life into it, in fact many lives. Christmas gift making shall commence!
By October 2021 I was settling in to our new rhythm. Mum’s needs were being cared for in Fleet Valley Care Home, not 100 yards from where she had brought me and my brothers up, giving us the best of childhoods. And many of those caring for Mum were from this local community, a community which meant so much to Mum, which she was at the heart of for some years, when she was the Provost of the town (ok, she was chair of the Community Council, as it was after regionalisation, so although she was not technically Provost, she wore the Chain, and it looked mighty fine on her ample bosom!).
Talking of ample bosoms, Mum used to tell us the story of her Great Aunt Janey, who had a very small gullet (at this point in the story, Mum would always make a small coughing sound, to demonstrate the teeny tininess of that gullet). The small gullet was not the most memorable thing about Great Aunt Janey – she used to wear long ropes of beads, possibly pearls… and they would swing across her ample bosom. They would also land in a bowl of soup at the lunch table, and then continue to swing across those bosoms later, leaving a rainbow tideline of soup all across her bosoms.
Today I feel a bit as though my skull has its own tideline. I’ve been diagnosed with Idiopathic Intracranial Hypertension. My translation of this is as follows:
Idiopathic = the medics don’t really have a fecking clue what is causing it
Intracranial = the bit between brain and skull
Hypertension = high pressure
In essence, my CerebroSpinal Fluid (CSF) is operating at high pressure. The lumbar puncture released it temporarily, but the amount that is removed during a lumbar puncture is only a fraction of what the body makes in a day, so it only relieves it for an incredibly short period.
The lumbar puncture felt like a very old school mechanical way to test for Intracranial Hypertension. They attached a basic pressure gauge to the needle they inserted into my Spinal Column. When I say a pressure gauge, I’m talking about a thing a bit like a mini barometer, or thermometer – a thin calibrated glass tube, which the fluid whooshes up until it stops and reaches ‘pressure’ and you read to see what the number is.
Ordinarily, they would expect it to reach pressure at about 11 for someone who has ‘normal’ CSF. The gauge goes up as far as 35. When the needle reached my spinal column, the CSF skooshed into it, and up the gauge all the way up to the top… so the nurse removed the gauge and replaced it with another. And the same happened again. And again. Eventually when they had removed a few wee bottles of CSF, my pressure settled at around 22.
So, that is what is causing my various symptoms at the moment.
I feel a bit like I am the sea. I can almost sense the waves lapping up, back and forth, inside of me, though I can’t really tell WHERE, there’s just a sense that I am made of waves, that perhaps I am an ocean. And then some days it feels as though there must be a really high tide, and that the sea is swelling and brewing for a storm. This creates quite the headache. Other days I feel as though I have sealegs, all wobbly and slightly unable to co-ordinate. And then there is the constant sense that some things are blurry – like there is seaspray all over my windows, and I need to give them a good clean.
I wonder if my CerebroSpinal Fluid is subject to the moon’s gravitational pull in the same way that the oceans are? Have I got a tidal force inside my head? Anyway, I’m already monitoring how it feels day to day, and I think I will include the phases of the moon in my data… Eventually I intend to use this data to create A Thing, possibly a cowl, possibly a blanket depending on how long I keep collating the information. Anyway, it will have colours and symbols and will be made from wool and will represent me beginning to live with this chronic condition. Well, a graph generated from an excel spreadsheet would be too easy wouldn’t it? And dull.
In other news, I still have some of that pink blanket. I made some oven gloves, using this pattern for the Bombazine Oven Mitt. It was a free pattern back in the day, but I’m pleased they are now charging for it. They took the time to create the pattern, and should get some benefit if people are making it. It’s a lovely pattern though – very easy and great for using up scraps of fabric. And woollen blankets.
Anyway, I hope that wherever you are this January you are feeling warm and durable. How is this year working out for you so far? I’ve just switched on the propagator, and plan to sow some chilli seeds later – I should have got them in a week or so ago, but I think we’ll be ok so long as they are in before the end of the month. The snowdrops are just beginning to peep out, telling me that life will go on, no matter how bleak it looks some days.
Remember that. The snowdrops know.
***
Thank you for reading this.
Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.
Finally, if it’s not too much to ask (I know, it is, apologies) I would really appreciate it if you could make a donation towards Alzheimer Scotland. They’re doing stuff that makes living with dementia more bearable for so many people. Thank you, thank you, a thousand thank yous.
With my big brother and big sister! Such joy to spend time with them this weekend.
I do love this picture, and will forever treasure it.
So much has happened since that picture was taken. That window in the background is now our bedroom window; we’ve been living here for about 3 months, and are in the process of purchasing the house, so that Mum can continue to pay her care costs.
And just over a month ago I started having funky vision. I say funky, making it sound quite fun. And it has not been fun. Though, in all honesty, initially I was not worried about it at all, believing it wasn’t serious and it would just go in the same way it had just arrived.
But troubling things don’t seem to just go in the same way that they just arrive.
After a trip to the optician followed by an emergency appointment with the eye consultant at the hospital, I was referred for an urgent brain CT scan (over Christmas and New Year). And then a follow up appointment with the eye consultant, followed by an urgent brain MRI scan and then an attempted urgent lumbar puncture (after nearly 8 hours in the day clinic and two consultants literally stabbing me in the back, they admitted that they didn’t have the skills and referred me to the anaesthetist team to carry out the procedure).
The MRI scan had revealed that I didn’t have ‘anything bonkers’ going on in my brain (according to a consultant as he was attempting to give me a lumbar puncture); the lumbar puncture revealed that the fluid around my brain is at considerably higher pressure than is normal, and this is the cause of the funky symptoms (vision loss, headaches, brain-like-soup, memory loss and who knows what else that I can’t currently remember clearly).
Anyway, I now have a diagnosis, and another appointment with the consultant at the eye clinic next week to discuss how we manage it going forward. My life will be different, but it always was going to be different… all our lives keep changing. How we respond to that change is what matters.
***
Thank you for reading this.
Mostly I blog about my relationship with Mum and her dementia, so if that might be your thing, then you could start here at Taking smock of the Situation. Or just dip in. After all, if I’ve learned anything this last few years it’s that chronology and time are less important than we might believe.
Finally, if it’s not too much to ask (I know, it is, apologies) I would really appreciate it if you could make a donation towards Alzheimer Scotland. They’re doing stuff that makes living with dementia more bearable for so many people. Thank you, thank you, a thousand thank yous.
Shewolfinthevalley 