On 1 hand this, but at the same time...the Pandora's box of Paradoxical situations

All about caring
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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:

  1. 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…
but then…

  1. 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

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@Victoria_1806 agree 100% with everything you’ve said. Sending a big hug :hugs:

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Thanks @Sue24 even after all this time and now, years of caring, it feels like a continuous stream of justifications…but a lot of that is the internal voice critic too…that’s why I keep having to remind me myself and I of why we did what we did when we did it!! Yep crazy but so true! :joy:

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Mum had Alzheimer’s and Vascular Dementia and often felt trapped in her flat. This got worse during covid as she was among the extremely vulnerable, and it was the only thing that made it easier to convince her not to “escape.” The long spells in hospital - there were a few - were difficult, but then she found her own answers. Before covid, she decided I’d taken her to Australia. Lord knows why. The day that one came up was cold, miserable and wet. Not very Australian, really. When covid hit, and visits were stopped, we were castigated for not visiting. “What have I done to upset you?” - so long explanations about covid ensued. Then it became obvious that she could no longer live in her flat, and she was moved directly from the hospital to a care home. She liked the place but called it a prison. She only ever got out of there for trips to the hospital, and was never well enough to go out for a trip again. That was really difficult.

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@Charlesh47 :broken_heart: Thanks for sharing, Charles

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No one thinks of carers as prisoners ourselves, but we are.
Although my son no longer lives with me, never a day goes by when I’m doing things for him, or planning how to…get him to a good dentist to get his teeth done, after the care staff let him walk out of the special LD dentist because the dentist was foreign and hadn’t been told that M need short sentences to absorb what was being said. Now he needs varifocals. Staff couldn’t support him to choose some. He needs the chiropodist again, the old one has left and he can’t cut his own nails, staff won’t cut them. Then the council are changing from green bags to wheely bins for green waste…the list is endless. My only escape is when I go to Crete, that’s the only time I can really be myself.

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