For me, time has always been cyclical. Perhaps that’s part of being an historian. Perhaps it’s my pleasure in patterns and routines. Time goes round and, although spiralling, when looking at it parallel to the spiral it seems to meet. It has gone forward, and yet it has met. Time is reflective – both forwards and backwards.
So here we are – one small cycle, one tight coil, has met. It’s a good time to reflect.
One month today, Mum was diagnosed with MND. Where are we now?
All the certainty I had a month ago has now gone. That’s not just because of the diagnosis. The end of my temporary contract is coming up fast, and my housemates revealed that they don’t want to sign another year-long contract, so I have a lot of uncertainty about home and work.
The diagnosis has undoubtedly exacerbated these problems, though. It has left me emotionally fragile, and I have struggled at times to cope with some of the big changes in my life. I feel more vulnerable and unsure. I need more stability in these aspects of my life so that I am in a better position to support my mum and appreciate the time we have left. And I need a permanent contract now more than ever – I need to be able to guarantee that I can afford to get to her when she needs me.
Mum is doing well, in many respects. She continues to amaze me. I know she has a history of mental health problems, but she hasn’t retreated into herself, and she isn’t despairing. She’s happy. She laughs. She is determined to stay positive, which is brilliant, and inspiring.
At the same time, the speed of her deterioration scares me. In thirty days, her speech has become more strained. I had assumed that her voice would become a whisper, and would slowly drift away. It isn’t like that. At first it sounded like she was trying to speak with her mouth full whilst keeping her lips closed – you could hear her but it was muffled. Now, it’s like her tongue has swollen to three times its size and she cannot force the words out. To hear her, I have to look at her and concentrate. I know she won’t be speaking for much longer.
Two weeks ago, tests revealed she has high levels of carbon dioxide in her blood, which is the first sign of her chest starting to go. She struggles to breathe at night, and we can’t afford a raised bed for her. Everyone has donated pillows and cushions to try and keep her vaguely raised at night, but it isn’t good enough. As soon as she is able to cash in her pension, we will get her a new bed. I hate not being able to afford the equipment she so desperately needs. She also hasn’t been given the oxygen mask she is meant to be sleeping in – no word from the hospital about when to expect that.
Last week, she revealed that she had stumbled and he left ankle was weak. We have been monitoring the situation and it seems that this is the first sign of her legs starting to go too. She cannot rotate her left foot. We’ve got her an ankle support to try and help, and she’s continuing to do some gentle exercise. Today the hospital finally offered her some physiotherapy to try and retain the functionality of her limbs for as long as possible. However, if it’s already starting, then there’s little they can do to stop it.
I knew that Progressive Bulbar Palsy was quick. I just didn’t know how quick. I feel like it’s happening without me, and I am constantly trying to play catch up. By the time I have started to get my head around one aspect of her condition, more has happened. I often feel quite frustrated that there isn’t more information about PBP available, to give me some framework of what to expect. I know each case is different, but some vague guideline of what to expect would be massively beneficial.
One month on, I still feel hugely out of my depth. We’re taking each day as it comes. I still go to bed not quite knowing how I’ve got through the day or how I’m going to cope when the next one arrives. But whenever something happens, regardless of the distance between us, we deal with it. We are communicating a lot better, and we are planning for a happy, if short, future with her. I just can’t believe one month has passed already.
Has it really only been a month? It feels like years, and yet feels like it isn’t happening. Will it ever properly sink in?