A rock and a hard place

If you followed the blog previously, you will know I'm trying to do my best for mum as we progress with dementia.

There is a common phrase of 'living well with dementia' which I have heard the professionals use.  It says what it does on the tin.
Now, do you wrap her in cotton wool and not actually let her live or do you sometimes push some boundaries to fill life to the brim while you can?
I'll quote someone clever who no doubt reads this blog and won't mind me using her phrase,
"Would you rather be the one looking out the window watching all the others conga down the corridor? Or would you rather be in the Conga?"
Speaks volumes right there!

Remember Tommy Cooper and the famous way he transitioned from this earthly life?  On stage, with people laughing.  Everyone at the time said what a fabulous way to go.  Doing what he loved.

Yet here I sit, listening to her coughing while i tap away on the keyboards (writing for so many reasons, not forgetting the fact that I really want to remember everything good and bad as well as earning a crust while she sleeps) knowing that she has been confused more than usual lately.  We are away on a mini break you see,  and to her in her world, everything is different.
For mum, at her stage of dementia, she is capable of taking herself to the toilet, getting a drink and a snack and being left alone safely.  Which is fantastic.  Yet it can also mean I might have to second guess what she might be struggling with when she won't even know that herself.

For instance, where are the breakfast bowls, the fridge, the knife to cut the banana?
So, making sure I leave these things out for her will help.
She can't switch on the TV. So I will do that and knowing she found the volume button today, I left it quiet so she can just turn it up when she needed it.  A light left on at night time will help her if she needs to goto the toilet. Although, she generally sleeps 14 hours right through (which I'm reminded by other dementia carers that I'm very lucky!).

All of this said, there is heart failure to deal with. I hear her coughing in her bed.  I know what is happening here.  She has something called Diastolic dysfunction. It means her heart is affected with the 'relaxing' stage of the heart function as people know it.  So where it should fill with blood, it sometimes doesn't.  The only place it can go is the lungs which makes her cough.  Daily her obs are unpredictable.  Sometimes they are pretty good, mostly not. She misses many heartbeats these days after a short period of flatlining which is frightening.  Generally every third beat is missing.  This is linked to her Mobitz 2 heartblock she has as a result of her heart attack.
A big snore comes from the room. This is the almost type of sleep apnea but not quite.  She's had that for years.  And while I do see her symptoms progressing, there is no point not living.  The following photos will show testament to that....

Certain things mum does drives me nuts.  Not all of it dementia related.  I have spoken before about her sense of entitlement that I'm sure we have Dad and his loving ways to thank for that; spoiling her.
.  That's not dementia. That's just Mum.  She laughed tonight as I served up her dinner, pointing out that some of the 'oven chips' (I can't stand serving stuff like that but she wants what she wants) might be a bit hard for her fragile teeth. Being laughed at can be hurtful. "ohhh right, ok." We get time and again with a Tut at the end!
 I could have given up. The laughter isn't pleasant. But this isn't dementia. This is mum and her personality.  But as time isn't on our side I do try and let these things go and focus on spending time together.

Instead, we have popped her in the wheelchair and pushed her a few tens of thousands of steps a day uphill (not fun with my issues but more about that another time!) and given her a nice time.

This smile says it all.

Is it worth it?  Absolutely.



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