Along the highway this morning I passed a caravan with these words written loud and clear…Adventure Before Dementia.
But what if its too late? How do you have dementia and still adventure? Is this possible? Or if you, or a loved one have other serious illnesses? What happens when one person becomes ill and the other partner’s life suddenly and dramatically changes? Or does adventure take a different form? Is adventure redefined in this context? What is the ” adventure” those with dementia face?
Adventure Before Dementia is ironic given a hectic week trying to navigate medical, hospital and care systems on behalf of our family member, who at 83 years old lives with dementia. He collapsed in his back garden and luckily he was with carers and friends. He collapsed last month too and 2 months before that. Each time after hydration and rest in hospital for a few hours, his blood pressure recovers and he’s sent home on the same day. It’s the same pattern. This time, after 3 days in hospital and extensive testing he ended up singing and entertaining the other patients in the ward when we got the call to take him home! Hydration and regular small fresh meals required. This was the prescribed treatment plan.
Many of my friends also seem to be navigating the hospital, medical, care, and government agency systems on behalf of their families too. We’re in that carer age group. Not yet at the “needing care” stage ourselves, but caring for others who are fragile and needing support. It’s sometimes like looking in a mirror to the future while holding tight to the fantasy that it will never happen to us. You’ll know the time and energy involved in advocating for a sick loved one and playing the linking and connector role between information and agencies. You need nerves of steel, the diplomatic skills of a saint and refined, high level assertiveness skills. You also need self care skills.
I called the hospital doctor and asked for test results, diagnosis, treatment etc. I was fobbed off a number of times but eventually he called me. He was very good and spent 30 minutes working through all the data. Then he said…” There comes a point where consistent care can only be delivered in a 24 hour supported care setting. I have 15 patients in this unit and everyone of them should be in fully supported aged care. With dementia there comes a time you have to hand over care to professional teams but the family is hugely important is providing love and support of a different kind.”
I mumbled something about horror stories of aged care, the Royal Commission into Aged Care and similar. But the message got through and it was devastating. I howled at the moon.
The mantra has always been. He stays in his home..always. …… surrounded by his vast collection of books, his beautiful garden, the piano his father bought him, his artwork and the neighbourhood he has lived in for nearly 40 years. He’ll stay in the quirky house in his little community of dear friends who live in the studio and in the front half of the house… a share house of elders. Over the years his house mates have taken on more of a carer role and without their presence in the house he could not have stayed at home.
My reasoning has been………. How hard is it to organise a few carers, meals, medication, agencies, medical specialists, public holiday cover, manage medical emergencies, attend to his social needs, government assessments, manage his anxiety and depression. There’s a whole team doing this. How hard can it be?
The answer- even with 15 people involved in his care and medical team, it’s really hard and the crucifying thing .. no matter how hard you try, Dementia gets worse.
I know many of you have travelled this road with a family member or friend. I know for some of you this road has ended now and there’s grief and sorrow with that ending. Perhaps the Adventure with Dementia is to find the very best way of caring for the unique human being who deserves dignity and love in their final years. The adventure is to still find ways to play and laugh as a family. The adventure is to share stories and memories together. The adventure is to keep advocating for the best care available. The adventure is to bring generations together to create memories, videos, photographs so grandpa is not ever forgotten.
We’re still holding out and hoping he can continue to live in his home. We’ve added services, changed medication and redefined carer roles and hopefully he can remain in the place he loves. But we know its at the tipping point. If there is any further deterioration in his health we need to be ready with another option,
So slowly, thoughtfully and in fear our family travels the path so many before us have travelled. How to find an aged care option good enough for someone who has lived a full, vivacious, engaged and largely happy life and now finds himself fragile and vulnerable….and who deserves the best. This is his next adventure – to completely change the life he has known for over 40 years. Hopefully, we can hold out on aged care a little longer but we need to be prepared.