There’s an online video I’ve seen shared a lot lately, called Paris Opera. I first clicked on to it expecting lots of singing (well, it’s called Paris Opera, right?); instead, however, there was lots of dancing. Lacking as I am in artistic talent and knowledge, I was a bit surprised that ‘opera’ could mean dancing. But the dancers were really engaging to watch, so I carried on viewing. (By the end, I just assumed that there must be dancers, as well as singers, at that opera house in Paris somewhere. I bet it looks a lot like the one in Sydney, except shaped more like a croissant.)
Today, as I blog, I’m being treated to a similar spectacle. Mum is at one of those points in the day when her Parkinson’s makes her seize up and double over (widely referred to as ‘a freeze’), and she’s currently clutching at her Zimmer frame, trying to combat the freeze by Doing Her Exercises. Left leg straight, toes pointed, tap tap tap, ten times. Now the right leg, tap tap, can’t manage ten because of the hip operation site hurting; ah well, five times then. Now, stretch the left arm up, up to the ceiling, up and stretch, arc to the side, release. Now the right arm, same again; these ones are boring, she says. Hmmm, but I also find them nice and calming, I say.
Feeling looser now, she starts trundling forward on the Zimmer, the usual determined scuff scuff of her feet audible as she counts the steps towards the living room door. That’s something she does all the time these days: measuring everything in steps. She spends so much of her day bent double with stiffness and pain that she sees a lot more of the floor, wherever she is. She recently mentioned that we have a gently sloping corridor. I hadn’t noticed that until she said it.
She stops as she reaches the door. Which way is my room, she asks, as she often does. I remind her: it’s on your right, it’s the first room on your right, after you leave the living room. Oh yes, she says, I forgot. In addition to the mild hallucinations she’s been having for several months, she’s started to become more forgetful lately. She shuffles away, scuff scuff scuff, that shuffling step so typical of later stage Parkinson’s sufferers.
Parkinson’s is tough. It’s a constant struggle against a gradual decline. It’s a creeping illness that can last decades, gently and inexorably invading your body, your mind and your life. Last weekend, Mum started taking a New Tablet. She’s already been on a few meds for several years; but the thing with Parkinson’s meds (as with any meds, I guess) is that your body gets used to them over time; so, you have to keep increasing the dose. Once you get to the maximum dosage, the consultant neurologist then starts tweaking and retweaking, adding half a tablet here, a capsule there, altering dosage strengths and frequencies.
The New Tablet is one of those tweaks. Over the Christmas and New Year period, when she was still on the lower dosage, Mum’s Parkinson’s caused her a lot of suffering, with pain, lack of sleep, depression, loss of mobility, and associated practical problems. When she saw the neurologist in January and told him all about it, he nodded sagely, saying calmly and kindly that Parkinson’s patients often deteriorate more rapidly after breaking their hip in a fall. Doctors have an amazing ability to deliver bad news kindly. He recommended a four-week phased increase in her Parkinson’s meds, up to the maximum dosage, and a follow-up appointment in two months. In March, Covid changed the country, and the follow-up was by phone. By then, it was clear that the increased dosage was of limited benefit. Mum described her recent experiences to the telephone receiver, and the unmistakable, calm, kind voice intoned that it was time to add the New Tablet. With the lockdown, Mum’s move into our house, and the time and paperwork needed to settle in to her new home and new way of life, it was a few weeks before she started taking it.
The New Tablet made a difference to mum straight away. Her mobility improved, her pain decreased, her mood improved, and she even got a few hours of unbroken sleep every night. She also started hallucinating a lot more vividly than she had done before, which unsettled me initially; but, as she was so much happier, it was worth it. Within a couple of days, she was joking confidently in the kitchen with us while she made a huge dish of (sublime) macaroni cheese. Then the downsides started showing up. Mum couldn’t remember names, times, things that had just been said. She started becoming disoriented. She kept forgetting how to play her favourite card games.
On Thursday, things got weird. Mum joined me as I pottered around in the kitchen. She chatted and joked. She remarked that she had a lot more energy than before to Do Her Exercises, and flung herself across the room between the fridge and the sink, in her enthusiasm to prove it. Delighted to see her so mobile and upbeat, I suggested a walk along our track. She managed a chatty, cheerful mile.
Walking back into the living room from outdoors, however, her brow furrowed. This time, she hadn’t just forgotten where her room was. She didn’t know where she was at all, never mind what room she was in. To her credit though, Mum took a methodical approach. Over and over again, she recited directions to herself: what room she was in now, how to get from this room to the other rooms. Thinking it was best not to leave her alone that night, I brought a duvet into the living room; she, however, insisted I go to bed. We agreed that I would accompany her on a ‘mapping tour’ of the downstairs rooms, just to be on the safe side. Afterwards, reassured, I went to bed.
Friday morning was full blown crazy. The living room and spare bedroom had been completely reorganised. Small piles of cushions and socks, jumpers and biscuits, medications and Mars bars, papers and plastic bags, were on every surface. Mum welcomed us in to her new flat, then offered to sell it to us for £1. She was delighted with the lovely views. Every now and then, she offered a cup of tea and a biscuit to an imaginary guest standing by the window or the shelving units. When they didn’t answer, she jovially told them to stop being rude, or to stop hiding in the cupboard.
It was all rather unsettling, especially first thing in the morning; however, Mum seemed happy, so I accepted her offer of a cup of tea and sat down with her on the sofa. We chatted, about the views, the weather, about school friends of hers, about our plans for the future. She mentioned that she had been feeling ‘fuzzy-headed’ when playing cards, and I suggested that the New Tablet might be responsible. She understood my point of view but wanted to keep taking it, because she had promised the neurologist she would give it the necessary time to work properly. So, she and I agreed that we would talk about it another time, and meanwhile the three of us would stay in this nice place, and she would put away her belongings. Cheerfully assuring Mum that I would join her for lunch as usual, I went to the other spare room to log in and begin the day’s work.
Happily, by lunchtime, I had had the opportunity to calm myself, I had obtained advice and reassurance thanks to a call from our local NHS Parkinson’s Nurse Service*, Mum had put her belongings back into her room, and I had even managed to do some work. Our lunchtime conversation was still quite bizarre; but, whatever reality she was currently occupying, it was real to her, and therefore, I told her, no less valid than mine. Most importantly, Mum appeared happy and safe; so, I felt I could do my afternoon’s work. A friend contacted me via our work’s Skype system, and it felt so good to be able to offload to her. Shaun, meanwhile, wasn’t quite so lucky, as his afternoon was spent alone. At some point, I realised that he was blitz-cleaning the bathroom; I hoped he was managing to vent some stress. I worry about what this change in our lives and our home is doing to us, to him most of all; when I bring it up, he grunts and tells me he’s fine. We all spent the evening quietly, mostly watching TV. Mum remained in good spirits and, apart from a short interval spent conversing with the weather man, she was settled.
Saturday began with the usual meds, including the New Tablet. The Parkinson’s Nurse had told me that it produces a euphoric effect in Parkinson’s patients, as well as exacerbating hallucinations and other side effects of the pre-existing meds. You’re definitely right about that, I’d told her; but Mum didn’t want to stop taking it because she promised she would give it time. Your Mum’s quite right in saying that too, she’d said. So, make sure she’s drinking enough water and getting a balanced diet, and call us back if you need to. The day passed with fingers crossed, but largely without incident. I’m ashamed to say though that my reserves of calm and good humour, that I’d been tapping on Friday, started to dry up, and I became increasingly grumpy and withdrawn as the day wore on and I grew more tired.
A phrase I’m constantly hearing these days, in the context of Covid, is ‘the new normal’. Is the New Tablet going to end up shaping our ‘new normal’? Does it feel normal to Mum? She seems happier than she was before the New Tablet, but is she? She gets frustrated when she makes a mistake in a card game, or when she’s told yet again that there is no man in a hat standing by the window, no tall girl loitering in the kitchen. Aside from those things though, she’s more mobile, with more energy, and in much better spirits than she has been for months. Is the benefit worth the cost? Above all, if Mum ever reads this, how will she feel? Will she ever remember any of what happened on Thursday night and Friday? Will my words, my version of events, be alien to her? Am I letting her down? Does she know I love her and respect her and the struggle she lives with, every minute of every day?
Finally, I wonder: how long is this going to last? Can I be the support Mum needs me to be? Do I have the strength? How can I make up for the gaps in my knowledge? How long until the meds don’t help anymore? What then? Endometriosis, the usual subject of my blog posts, is painful, debilitating and exhausting. Parkinson’s is all of those things, plus: confusing, and cruel.
*Addendum: the NHS Parkinson’s Nurse Service is a godsend. They are a crucial, accessible link between the Parkinson’s patient and the consultant neurologist, providing the ongoing, practical and emotional support and advice that he does not have the time to give. The Parkinson’s field is complex and tricky to navigate, requiring specialist practical and medical knowledge, which they are always happy and able to supply. Since her hip operation last year, Mum has had the support of two fantastic Parkinson’s nurses, whom she likes and trusts. Sadly, due to the Covid crisis, both of these nurses are currently redeployed. Thankfully, the nurse who called me on Friday was every bit as fantastic, giving me exactly the help I needed, exactly when I needed it most. I am absolutely, unquantifiably, grateful for the NHS. I fervently hope that the NHS Parkinson’s Nurse Service can keep going. When I #clapforNHS, I will be clapping for them too.
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