Tuesdays and Fridays are difficult days in my week as they are my swap over days, on Tuesdays I go to the office from my flat and go ‘home’ to my mum’s flat. On Friday’s, I go home because while I love hanging out with my mum, I draw the line at sleeping on an inflatable mattress /floor more days of the week than I sleep in my bed! However, one of the themes of this blog has been how much I struggle with transition, on Tuesdays, I don’t want to leave my flat and on Fridays I don’t want to leave my mum, even though I go back to see her for the day on Saturday and Ben comes to see her on Sunday, while I know I’m not abandoning her, I feel like I am!

Friends have expressed concern about me, about my self-care and resilience and other people have said it’s too much to do. I don’t believe it’s too much for me to do for my mum, other people have other circumstances, responsibilities, and priorities. What I’m doing is not a criticism of what they are able to do for their parents. However, I’ve been saying that the routine needed to bed in, and I needed to get into ‘harness and it would be fine, also I have a friend whose husband had a stroke last year and a boss who has a child who has significant needs. I feel they have a more difficult road to walk than the one I’m on, all I’m really doing right now is hanging out with my mum. 

However over the last couple of weeks, I’ve started to feel that I’m settling in. Not gonna lie, for most of September, I was fried. I managed to do everything that I needed to do for Mum but my flat and my life was feeling a bit more chaotic that I was comfortable with, I guess I was also coming to terms with her diagnosis. PSP is a nasty and rare disease (I’d never heard of it before Mum got it and the neurologist at the NHS hospital has only seen one other person with it). Knowing that your beloved parent has a disease that won’t only kill her but rob her and us of herself, honestly, it sucks. In a way, that it’s a fast disease is it’s only blessing, Alzheimer’s and dementia can take decades.

I’ve also been dealing with a sense of failure, that I should have seen that it was more than her balance, looking back I can see that this has been going on longer than a year, the decline has been quicker since her concussion last year but I can see now that there were other changes but I just didn’t know to look for.

All that to say I’ve been doing a lot of emotional processing, which combined with a lot of change to routine, was causing me to be frozen at home. I was doing the bare minimum to get by, and it was showing in the state of the flat (I’m pretty sure that at the beginning of the month, I did the same load of washing about 5 times because I kept forgetting about it). I know it was bad because I read one book from the end of August to last week! I don’t love not being in control and honestly, it was hard for me to cope with all the change, autumn and all the things that Mum needed. After the first week, I realised that what we needed were blocks of time with minimal back and forth. Originally, I was going to go home on Wednesday night and visit on Thursday and then Saturday. That really doesn’t work, now I go Tuesdays and stay until Friday morning (if I’m going for a walk with Sue) or Friday afternoon/evening if not. I come back on Saturday to do shower, housework, shopping, food prep and hang out.

And I still have my moments, especially when I’m tired. Last week was not good. The thing about resilience and self-care is that they are interconnected. They are both like muscles you have to strengthen and stretch them and they work with each other. I believe that in order not to burn out it’s important to notice what helps and doesn’t and to give yourself some grace. These are all things, I’ve done over the last three decades or so (sometimes not as well as I’d like!) and I’ve realised that I’ve been putting them into practice this month without really thinking about it but I have noticed it showing up.

To show you how that works in my like I want to take you through last week when I noticed the pattern. I had to be in the office Monday and Tuesday. We had a new starter on Monday, I woke up feeling dreadful, I’d was migraine-y, which is defined as an upset stomach and a banging head, which could get better or worse, following a dreadful night’s sleep. I got up, took some paracetamol, my vitamins and ACV (self-care) and got myself to work, I got into the office early (resilience) but I did not have lunch or breakfast with me, I decided that if I felt bad at lunchtime I could go home (grace). I didn’t feel fantastic at lunch but after a short walk, I decided I wasn’t sick enough to go home and as I was in the middle of a piece of work, and I made a call to just get it done (resilience). However, I left the office at 5.05pm and was home by 6:30pm (self-care). I came home, and I decided that laundry left from the weekend, wasn’t going to get done (grace) but that I would take everything on the airer down and put it away (resilience). I did not feel well enough to eat but I tidied the kitchen and sorted out what I was taking to Mum’s the next day. (resilience). There was even some light hoovering, I had a bath and went to bed (self-care).

The next morning (after 7hr47m sleep – yay for self-care!), I got up and made my bed, packed for mum’s, got ready for work and managed to take the recycling and food waste out (resilience) because Tuesdays are also bin days, I also managed to clean the bathroom sink and toilet and the house isn’t perfectly clean but it is clean enough and tidy, so that I won’t feel terrible when I get back on Friday (resilience and self-care). I was in the office about 15 minutes later than usual and again without breakfast or lunch but with coffee. So I skipped breakfast and bought lunch again. (grace). On Tuesdays, I get the train to Waterloo, I could walk it but it’s a 25-minute walk, with a rucksack and a suitcase along the South Bank with the tourists. I give myself the gift of not having to deal with that and get take the drain!

So gradually my grinding out the tasks is giving me some space for self-care which in turn is helping me get more resilient and being more resilient, I can see the change and give myself grace for what I’m not doing but instead of seeing it and berating myself for not doing those things, the noticing of them is helping me solve the issues.

I’m not sure that all makes sense but I’m more aware of how it all works together. Resilience doesn’t mean things are easy, self-care doesn’t mean doing what you want to do, grace isn’t about things being ok when they aren’t done. I’m trying to find a balance and it’s mostly working. In all of this, it seems ridiculous I can see how lucky I am. Mum is approaching this with such grace, (even knowing how I difficult this is going to be, I would still pick her, she’s the best parent anyone could hope for!), she raised me, I know I can do this. I’ve also been lucky to have the care and support of my friends and while it felt difficult at the beginning my brother is being fantastic, work are also being great. Truly, I’m very lucky, even as this is horrible.

And for anyone wondering, I’ve chosen to mostly illustrate this post with pictures of Mum, mostly of her from about 10-15 years ago, when she was absolutely herself. This is the Jillian, I wish everyone could know because she was a force of nature and I’m so lucky to have had that time with her!