Navigating life when Alzheimer’s disease joins the journey can be confusing and frustrating. Photo: Mint_Images.
There are an awful lot of potholes on this Alzheimer’s journey we’re travelling with Maggie the matriarch.
Some are just mere bumps on the road while others bring you to a jarring halt.
Less than 12 months ago, I wrote about how my “beautiful, intelligent, creative, talented mother is showing signs of early-onset Alzheimer’s”.
I wrote that she was still more than capable of living on her own and driving to nearby familiar places.
I also said “we can see it’s becoming harder, more frustrating for her and more worrying for the family”.
And so it has become.
We’re learning to let little things wash over us, like telling us the same story about her dog in every conversation, or the complete failure to remember names of the politicians we used to have healthy debates about – during the election campaign Peter Dutton just became “that baldy-headed bastard” and Albo was “the other bloke”.
I try to limit the times I correct her to only when it’s necessary, like the recent visit to the geriatrician where she confidently told him she’d had no driving mishaps in the past 12 months. She was shocked when I reminded her about getting the one and only speeding ticket in her life just months ago. She also told him she was having no problems with her health, despite the ongoing medical issues that had been making her so miserable recently.
I know full well that we are not alone in this difficult journey and I’m just as positive that like us, other families yearn for a much clearer set of directions.
It’s a lot like having your first child. Sure, you can read all the books but until you go through it you cannot possibly know how it will impact your life.
All I could think about when I was pregnant was the labour. It wasn’t until that was over that it suddenly hit me that I had to take this little bundle of joy home and look after it – 24/7.
That little bundle of joy can well and truly look after himself and the only time he keeps us up at night now is when he wants to play cards and drink red wine with us – much more enjoyable.
But now we find ourselves navigating another stage of life’s journey and sometimes it’s just as scary.
The emotions are similar – confusion, frustration and guilt, alongside healthy doses of laughter and lots of love.
Where once my sister and I taught our children the days of the week and the seasons of the year, we’re now trying to find ways to remind Mum what day of the week it is so she doesn’t miss any more of her rare catch-ups with friends.
The digital calendar my sister found online seems to do the job. As well as the day, date, month and time, we can set reminders for appointments or even new medications.
But we have learnt we have to be very specific in our messages. Instead of just the morning alert reminding her to put a patch on, we need to modify it to say “take old patch off before putting new one on”, because that’s a memory task too.
The pothole we hit this week that jarred me so much came when she messaged me asking me to call her because she’d had a bad night and wasn’t sure what to do about it.
Fearing the worst, I rang to discover the sore neck she’d complained about the previous day had worsened and she didn’t know who to see about it.
Twelve months ago, Mum would’ve just made an appointment with the physio a couple of blocks down the road. This week, she couldn’t remember that a physio was for neck pain, let alone remember where the physio was.
A year ago I wouldn’t have thought twice about Mum taking herself off to the physio. This week, I had to ring the practice because I couldn’t get there in time to explain she had Alzheimer’s and would have difficulty remembering if she had been there before or why.
I dropped in some painkillers to Mum the following day, only to discover the last time she had taken her medications, so carefully dispensed in a Webster pack, was two days prior.
One of her medications is for osteo pain, but she’d decided there were too many of them so she didn’t take them.
I’ve discovered that one of the emotions that is an unwanted passenger on this journey is grief – grief for the Mum I once had, the successful, articulate, intelligent woman to whom I would turn to for advice and support. There are still glimpses of that woman, but she is slowly fading away.
We are thankful though, that this journey into the unknown is accompanied by lots of laughs. Mum often says how grateful she is that she still has a very healthy sense of humour. We can only hope she never loses that.
Like when she mentioned her funeral plans and we reminded her we didn’t have to worry about it because she was donating her body to the university.
“Am I?” was her surprised response. “Goodo, then you can just have a party.” Yes Mum, that’s been your plan for the past decade.
To all those who are on a similar journey, good luck. For what it’s worth, don’t sweat the small stuff, take one day at a time and make sure you take time for you.
Sounds very much like the same advice I was given as a new mum.
