When you are responsible for the care of someone who is unable to manage his or her own affairs – whether it’s your baby, or a loved one living with dementia – there is one key question that you have to ask yourself every day.
“How do I make sure that this person is living the happiest life possible?”
My mum is 91, and really, she is fabulous! But she was diagnosed with Alzheimer’s Dementia at the end of 2016, so her daily challenges with significant memory loss continue to grow.
Our goal has always been to do whatever we can to assist her to continue to live independently, and living in her own home.
Because she won’t accept help from others, for my husband and me, it has meant helping her make and attend appointments, do the shopping, manage her financial affairs, and generally support her with things she can’t manage.
In truth, it’s like having another life to run.
With her memory and cognitive decline, increasingly, we have had to ask ourselves an agonising question:
“How do we identify the Tipping Point at which time in order for her to live the happiest life she can, she MUST have more assistance in her home, or be moved to higher care - whether she wants it or not?”
Over the last couple of years, there have been suggestions from others – particularly those involved in the medical side of things – that she should be in higher care.
Undoubtedly her wellbeing is at the core, but I think they miss one of the
fundamental things that make my mum tick – her need for independence, and importantly, the dignity that brings her.
For her, there is no doubt that being put in higher care equals the end of her quality of life on every possible level.
As a result, we have doggedly stuck to keeping her in her own home, and taking responsibility ourselves for picking up the slack.
Yes, her hair isn’t always perfect, her clothes are often not entirely clean, and she is often confused.
But these are the outward signs of her dementia, and we have felt the presence of all of the other things that make up my mother, means we owe it to her NOT to simply give her life up to higher care.
Sadly, over Christmas, we reached our Tipping Point.
Mum has been battling a medical condition that requires the application of ointment daily. It was only in the lead up to Christmas that we realised how unable she is to administer the treatment herself ultimately leaving her in a great deal of pain, and a state of significant confusion and much distress.
Her 12-day stay with us over Christmas gave us the opportunity to observe how she really is, and fair to say, it was a bit of a shock despite the fact that we see her 3 times a week including a sleep over on Saturday night.
Up to this point, we have chosen to focus on her emotional and mental wellbeing by helping her to remain independent.
Now it is clear that her safety and medical wellbeing are deeply compromised, but what is also clear, is that her mental and emotional wellbeing are therefore also at risk.
Quite clearly, she is not able to make a decision that properly considers all of the implications which means that she is not the best person to make a decision regarding her best interests.
So our agony in making a decision about whether to intervene is at an end.
2019 is a whole new chapter for my mum and for us.
Now we just need to figure out how to help her in a way that ensures she is left with some semblance of her dignity.