Ma and I have a deal, we both know that PSP is progressive (it is in the name*) and that there will probably be a time when I can’t care for her. When she first got diagnosed, I said that I would try and keep her at home for as long as I could. When we were having those conversations, she was falling loads and was too weak to pull herself up because she wasn’t eating. So the deal is that I will try to keep her at home as long as possible but she has to eat. I joke with my work team that my motto for team days is ‘never knowingly underfed’ and with mum it’s definitely true.
I also worry about what happens if for any reason I can’t be with mum in the week, so I meal prep breakfast and lunches on the weekends.
The consultant and the Parkinson’s nurse (there is no specialist help for PSP, but because it involves some Parkinsonism we get the Parkinson’s nurse) always ask about bowel movements. The bowel is a muscle and Mum’s muscles are slowly shutting down, from what I can see most people at the same stage of PSP are taking laxatives we want to avoid that as much as we can.
Mum has always been brilliant at drinking water, she has a 750ml water bottle and aims to drink two of them a day. I’m glad I don’t have to be the water police, although it seems like every time I sit down, Mum needs me to refill that bottle. So much so that I’ve bought her two new bottles that might actually be easier for her to handle.
Mum and I are creatures of habit (I suspect some form of neurodiversity here) so food breakfasts and lunches are usually the same thing with a bit (but not much) variation for dinner.
Breakfast is fruit and yogurt with ground flaxseed and chia. On the weekends she has two buttered hot cross buns and her yoghurt because things you want to eat and treats are important too. Fruit always includes a skin on kiwi, (I now buy the ones without hairy skins, because I can, before that I used to spend time scouring the hairs off!), pineapple because she requests it and another fruit or a couple of prunes. The yoghurt has some kind of compote on it, rhubarb or plums when they are in season or whatever frozen fruit she requests, this week it was peaches. This is not that much different from what she was eating before, the additions are more fruit, the flax and chia and the kiwi as recommended by the Parkinson’s nurse, which were the only suggestions she had for us.
Lunches follow the same pattern. This week the request was for quiche. This is roasted courgette, onion and spinach. There is always some kind of vegetable accompaniment, sometimes it’s roasted veg, sometimes raw. At the moment, she’s on a raw veg kick and it’s tomatoes, cucumber and peppers (there is often complaining about the veg but I just channel the mum from when Ben and I were little, vegetables are not negotiable!). Other options for lunches are boiled eggs, lentil muffins, prawns, chicken, feta and spinach muffins. Usually we also have a day of cheese on toast which Mum really enjoys. I have abandoned bread and yoghurt making for now, so we now buy sourdough from Gail’s, yes it’s expensive but it’s a cost benefit thing. If we couldn’t afford it, I’d find a way to make it again.
At 3pm mum has a snack, which is a banana and a cake. Cakes are usually made by me.
This week it’s coffee and ginger muffins, but while carrot cake and gingerbread muffins are favourites, it’s basically whatever I’ve made, blueberry lemon drizzle, custard cake with lemon curd, mince pies in December and even leftover Christmas cake!
Dinners when I’m not there are mainly pasta, or other things I can make in advance and freeze well. Roast tomato and feta pasta is very popular, lemon chicken orzo, and hot stew also work.
When I am there, it’s really about what she likes, every week there is a salmon fishcake and a roasted veg, usually broccoli or roasted carrots and parsnips (mum’s favourite is parsnips so she eats all the carrots first, mine are carrots so I eat all the parsnips first!). Salmon with pesto and leeks is also a quick win. On Saturdays, it’s always fish fingers and chips. Until recently, I bought oven chips but they gave me indigestion, so I switched to making them. Mum approves and I feel better
I was quite sniffy during the Covid lockdowns about people complaining about always having to cook but I take that back now, having to cook all the time for another person is a challenge i had completely forgotten about! On the days I’m not feeling it, there’s cheese on toast (or beans on toast for Mum, I still hate baked beans!), last week I was dealing with a headache that looked like it was turning into a migraine we had sausages and chips from the freezer.
This week, I know today is going to be a long day for me, we planned pizza. I’m currently dealing with an over abundance of tomatoes so I know that there will be some kind of roasted tomato soup and a fresh tomato sauce.
For the moment, I think Mums diet is in the right place, when I’m there we eat together which I think is important too. PSP is having an impact, mum falls more, she finds it harder to walk and her short term memory is more short term but all the things that we’ve been warned to expect in terms of her body’s functions (constipation, UTI’s and so on) so far haven’t happened and I do think diet is playing a part there.
One of the things I’m slightly horrified by is the fact that carers coming in will only heat up microwave meals and while I understand time constraints, I do think that the food we eat affects medical conditions and it’s a strand of care we’ve lost more generally and with old people in particular. I don’t have any answers to that overall and unpaid carers are doing so much already and it’s just another thing. This works for us at the moment but maybe not forever, mum might lose her ability to swallow or what she likes may change as the PSP progresses, however, I’m pleased it works for right now.
*Progressive Supranuclear Palsy
