Imagine watching your partner slowly disintegrate, in their place a replica who doesn’t know you, gnaws on the furniture, becomes randomly, intensely violent, and soils themselves, while offering you the rarest glimpse of the person you knew, just enough to keep you coming to visit and feeling horribly, horribly guilty that you weren’t able to keep looking after them yourself. Other times, resentment seethes through you because instead of being able to grieve and move on you have to live this twilight life too, and it silently erases your memories of the person you loved, replacing them with twisted visions of a human horror show.
Dementia, like everything, is on a spectrum and it can be hard to notice when it starts. You’ll have no trouble noticing it once it erases everything you knew and loved about someone you spent your whole life with. Having worked in aged care, the EveryVoiceCounts team are strong advocates of taking the future into your own hands. Life is a rollercoaster journey that was never designed to park us in a high-needs dementia facility for ten years before moving us onto the Great Unknown.
Prolonging life isn’t just about restarting hearts. Let’s say you have severe dementia. Under the excellent care of your nursing staff you might get the flu vaccination. Or you might get some antibiotics to clear up an infection. Perhaps you will stop eating or drinking – very common in nursing home patients – and your carers may insert an IV to feed and hydrate you. So your healthy body could keep ticking along nicely. And that might be what you want. If you think you’d prefer to let nature have its way with you, you need to be specific about that. If I am incurably, irreversibly and severely mentally incapacitated I choose to have no medical intervention beyond palliative care to keep me comfortable.
Think through what you feel comfortable with, consider as many scenarios as you can think of, and be prescriptive. Hopefully you’ll never need an advance care plan but if there comes a day when your doctor calls your next of kin to discuss your treatment because you can’t speak for yourself, the clearer you made your wishes the easier it will be for everyone.
So print these forms off, fill them out, email them to your family, lodge them with your Dr and talk them over with your partner. Done. Now go back to enjoying the ride.