“If you let someone else make the decisions for you, you will never be happy with the outcome.”
WOW, that's a strong statement!
And one that has stuck firmly in my mind since I heard it years ago.
But never have these words resonated more soundly than now, as I watch my 91-year old mum deteriorate with Alzheimer’s dementia, and see that she is a victim of her inability to put into place a plan that ensures her own wishes are carried out.
She’s been a feisty chick my mum, but I think in many situations, making choices has not been her forte.
Added to that, I suspect her upbringing, which continually encouraged her to defer to the males in her life – her father, her brother, my father, my brother – added to a lifelong behaviour of not really taking responsibility.
So here we are, years and years later, and mum is fighting to keep her independence.
And we’re behind her all the way, quietly picking up the ever-increasing bits she’s now not able to manage, and generally trying to keep her on an even keel.
Unfortunately we are getting into the zone where the help we provide isn’t sufficient, and the kinds of support she will need to accept to maintain her hard-won independence, are the very things she finds the most unacceptable.
For my part, when the time comes for my meals to be delivered, I’ll be
saying bring it on!!!
I mean seriously, what's not to like about having someone do the shopping, preparation, cooking AND clearing away for you?!?!
But for my mum, it remains an insult.
What she hears is not the possibility of a positive contribution to her daily life, but rather a statement about her inability to cope.
So very sadly, in the hazy life she often lives with her dementia, she simply doesn’t realise how far off coping she has wandered, and simply cannot make the right calls give herself the best outcome.
We know that mum’s ultimate wish is to maintain her independence, and at least some feeling of control over her own destiny.
The big question on our radar these days is: “At what point will we have to force the changes needed to keep mum living in her own place?”
And more importantly I think, “CAN we force them?”
And, if we cannot get her agreement, are we prepared, and at what point will we be forced to face up to the decision to “have her committed” to higher care?
At this stage, our answer is to soldier on. To keep the ship on an even keel for as long as we can, and don’t expect things to be "perfect” - I have to say, when it comes to maintaining a person's dignity in later years, I think perfection is an over-rated ideal.
I’m not sure where exactly our path will lead.
Certainly our hope is that as mum becomes less able, events will lead us naturally to place where the help she needs is in her own view, a positive not a negative.
Some people say it's not politically correct to call living with dementia a “journey” but really, it IS a journey, because every week we face a changing scene that requires us to respond in a different way in our efforts to get the best results for mum.
And all we can do - all any of us can do as we help a loved one to negotiate this journey we are on - is the best that we can.
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