Navigating Dementia, Allowing Joy
Is it wrong to ponder the positives of someone’s affliction, in terms of how it affects you? Perhaps. But perhaps as that person’s carer, it’s also a necessity for one’s own well-being to sometimes look at what’s going right, rather than what’s going wrong. Because in terms of the latter, the list is overwhelming.
I use the term “affliction” here because dementia is apparently not a disease, but an overall term — like heart disease — that covers a wide range of specific medical conditions. In our case, we don’t yet know the specific medical condition that has caused my aunt’s dementia. A psychiatrist said she has dementia and prescribed some medication, and that was it, no follow up whatsoever. We saw a doctor to ask what happens next, but he was an out-of-towner and wasn’t sure of what geriatrician to refer her to for a proper assessment. I said to my brother, “If she had cancer rather than dementia do you think he’d take the time to find out?”
The search for competent professionals who care about people with dementia continues. Meanwhile, my brother and I have adjusted our schedules so that someone is always home. My aunt needs someone here in case she tries to fry an egg, or wants to put away clothes that aren’t yet dry, or tries several times in a row to take Panadol for a headache and has forgotten that she has already taken the Panadol. On that note, I actually hate it when people ask how she’s going. If I say “not great”, which is the truth, they ask further questions. If I reluctantly reply with details they’ll say something like “Awww poor thing, bless her”, and I think, is there a dash of amusement along with that sympathy? I feel like saying to them, “You know, it might happen to you.”
Six months ago my household consisted of myself and my son. Now, my three-bedroom duplex is home to me, my son, my aunt, and my brother, who sleeps in a small living space he has petitioned-off for a feeling of privacy. My brother and aunt moved here so we could share the load. Sometimes, I feel sad that my old way of living — of having time to myself, of doing what I want, when I want — is completely gone. Sometimes I feel angry.
So where do the positives come in? I’ve found that the lack of free time has made me take my 24 hours a day more seriously, and establish a simple routine that prioritises feeling as good as I can in an ordinary day.
Perhaps “seriously” is the wrong word here. Let’s just say that I’m more intentional with utilising the spaces, more careful with what I do. In the morning, I get up early so that I have an hour to myself to write, and time to drink my coffee on my own. After being unwell for much of 2022 (not Covid, but a mysterious bundle of symptoms the doctors are attributing to “stress”), I’ve developed a comfortable habit of not writing, and that habit was nipped in the bud not only when I felt considerably better, but also when I was faced with the predicament of having no time to do it. Also in my routine is a set bedtime rather than “doom scrolling” Instagram late at night, which gives the following day a better start.
What follows from this new structure are tiny simple pleasures. Like my Sunday bath (with a mountain of books and constant hot water refills, of course) while my aunt is at church. When I had weekends to myself, I rarely engaged in this life-affirming ritual. And then there are the slow-but-sunny morning walks my aunt and I take before I head off to work, which is something I never made time for. We gawk at beautifully manicured lawns, quirky garden gnomes, and peach coloured roses popping out from the gaps in fences. And nearly every time we pass the “SLOW CHILDREN” sign my aunty jokes, “I wonder where all the slow children are?”
It should go without saying that I would much rather Aunty was vibrantly healthy, dementia-free. I wish people would go back to talking to her, rather than at her, or as though she wasn’t even there. I wish people would see that she still has a personality, and a great sense of humour. I wish they knew that dementia doesn’t make your ears fall off, and she can hear their comments. Like when the receptionist at her dentist surgery asked loudly to my brother — almost shouted — with Aunty standing next to him, “DOES SHE HAVE DEMENTIA?” Or the carer at the respite centre we were visiting, who asked with Aunty sitting beside me, “So how far along is she? Some of them get pretty bad.”
I don’t believe there is any benefit in using positive thinking to pretend a shit situation is anything but a shit situation. But sometimes, good things grow from shit. Sometimes they’re tiny little things — like a reason to prioritise going to bed on time, a luxurious bath, sunny walks and making time to write again — and they don’t negate the Big Terrible Thing. They don’t even come close. But the tiny things are still worth noticing, and dare I say — enjoying.
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