This is a long one - sorry! Soapbox time…
Some situations I’ve encountered, in the past, that drove me crazy flip-flopping - In the moment - ‘should we do this or not’ this is why ‘should’ is like a swear word
You want to do something…but… On one side it’s a great idea but the aftermath would be a LOT of cleanup / extra stress / exhaust them / other people had no idea or consideration of what it takes to…
A couple of my own experiences:
- why don’t you go for a weekend to the lakes, your dad could get out and have a change of scenery
a) on one hand that’s true and we could create more quality memories and time together, right?
b) on the other hand even if I project manage this all, he’s incontinent, wiped tired just from the journey and we do exactly the same routine just in an unfamiliar place that we have to pay for
bottom line, for US (not for everyone but given the big decline in Dad’s health) we decided to not do a trip but do something special at home.
We each have to weigh up difficult decisions all the time, with lots of competing factors that are very specific to our individual situations. In my humble view, if we can reconcile ourselves with whatever decision we make for the good of our caree AND ourselves, it’s the right choice…even if sometimes your caree thinks differently you may end up having to be the one that makes the unpopular decision…I had to keep reminding myself that I was navigating AND negotiating for the wellbeing of Dad, AND Mum and Me…
Even as I write this, I feel like I’m trying to requalify the choices we made!!..Living in the small moments, in our bubble was our bliss, taking him out in the wheelchair to enjoy sitting in the sunshine…
- I’ve learnt that many (vascular) dementia patients and their carers go through a dynamic where the caree feels ‘imprisoned’ Dad literally called us his jailors sometimes…and that’s apparently common!!!
a) in front of family members he said he’s ‘not allowed’ to do xyz - you can perhaps imagine some ensuing discussions
b) on one hand we figured out ways to do some things, on the other hand we literally could not do some things…
c) old school etiquette Dad used to mask and perform that he ‘wanted to do xyz’ or blame us, when he said hecould try to do a few holes on the golf course & we’d said no…BUT when the door was shut he’d collapse with tiredness, complain about why we let these people visit
bottom line he was frustrated (I know that because he literally told me that, whilst crying)
Giving myself my own advice, per above, hand on heart I know we were able to do our best for Dad and I’m proud that we were able to fulfill his wish to die at home. But dynamics with some family members have done a big shift, …and for me I can live with that!
Thankfully Mum and I are 100% aligned and that’s all that matters right now, esp as I look after her now.
I’m openly sharing this because it’s SO easy for everyone else to have an opinion or critique, AND sometimes that might be the person we’re actually caring for!!
I’m blessed that Mum and I were tag-teaming whilst looking after Dad, and we could talk these situations out, align, and qualify to ourselves what mattered. I know that’s a luxury blessing.
my learning try to talk with friends, your caree, and with empathetic people because frustration is another painful part of caring
I feel for everyone who is flip-flopping, feeling frustrated trying to figure out what is best AND how to have quality moments together