Morning all.
Knackered of Devon might be a better description!
I have that twisty stomach feeling again. That intuition that something isn’t quite right, with Mum. The weather warnings were spot on & thunderstorms have been entertaining me during another sleepless night.
I know I can’t change anything or do anything else to help Mum; but this process is torture. Yes I can step back from it all; but how do you switch off.
I find myself when visiting Dad in the CH wanting to sit down & tell him my frustrations with Mum, put my head on his shoulder & cry. I DONT
I am “little miss sunshine” when I visit but it’s all starting to get too much for me. I now dread meeting neighbours ( the dash to the bins & recycling is now done at unusual hours!!) as when they ask how are things - that kindness is enough to break the facade I daily present.
Dementia doesn’t only affect those diagnosed with it; it has a huge effect on the PWD family that I don’t believe anyone can understand or empathise with until they experience it for themselves.
It’s not the dementia that has the ultimate devastating effect it’s the lack of care & loopholes that are devastating. On good days people cope with the care of a PWD, it’s the ever increasing bad days that break family & friends.
The GP, SW, OT, DN etc never get to see those bad days or experience the continual frustrations they bring.
I take my hat off to those who live with & care for a PWD- honestly I couldn’t do it. I feel inadequate when I see what some people do for their PWD; I’m exhausted doing this long distance!!! After having Mum stay with us for protracted periods of time I know that my sanity & marriage wouldn’t survive!
I love my parents, but watching this disease eat away at them is breaking my heart; & I just want it to end. The constant feeling of grief seems endless since 2014 for Mum & 2016 with Dad.
Dad is losing so much weight now - yes he eats & is well looked after in his CH but he’s slowly fading away. I don’t recognise him if I can’t see his face, that breaks me.
I can cope with the mental confusion with Dad his gentle ways & dry humour are still present. As one resident said to me ( yes it was a lady!!) he doesn’t say much but when he does it’s funny!
With Dad it’s just the torture of watching him fade slowly away, the cruelness & indignity that this disease brings; & then the guilt as I drive away from the care home leaving others to do what I can’t.
I used to take Dad out for little trips between mealtimes. Now I am afraid to because of his incontinence & his frailty, my Dad wouldn’t want me cleaning him up.
He was very proper in that department shall we say.
Now my Dad doesn’t know who I am most of the time. Thinks I’m either working at the CH or just a friendly chatty visitor.
Those times he does recognise me he talks as if I’m a teenager again - with a social life. My daughter & husband don’t visit with me, he doesn’t know who they are - so it’s a solo journey I travel.
My husband says I’m having a pity party - but my heart is breaking daily. I don’t know what I’d do now without this outlet for my confused emotions or how I could continue to seem normal to others in my daily life.
I had even started up conversations with strangers in the weekly food shop queue to pay! Now there’s a red flag in extreme. I’ve now got the shop down to less than 30 minutes from arrival & parking to loading the car with shopping to stop that embarrassment. How did I ever become that person?
The most recent guilty feeling is one of wanting this situation to end; I want the finality that death brings. A natural conclusion.
Reading the sadness & grief that others feel on the loss of their PWD makes me loathe that part of myself that wants this to end. I know I’m not alone in this feeling; but still I’m torn apart by even feeling or thinking this.
My grandparents both had dementia & it was a horrible protracted demise. I remember watching my parents be destroyed emotionally by the process. I did everything I could to help ease that burden for them; so subconsciously I have hopes my children will do the same.
My son emigrated last year & I miss him so much, my daughter is looking to continue her education with a masters degree. I have given the children the tools required in life to fly the nest & live their own lives.
I’m so proud of them, but miss them & that support & love, their laughter & joy of life.
So another morning dreading the phone calls from Mum, the depressing daily calls of confusion & mental despair that she feels. Perhaps that’s her comfort zone.
Just like Dads comfort zone is “ the quiet man who doesn’t say much but when he does, it’s funny “
Thank goodness I’ve got that.