One of the many horrible-awfuls around one family member with dementia is the way it can threaten to divide the rest. I watched it happen, or threaten to happen with my own siblings over mum. What is best for her? How do we get her to see, from behind those rose-tinted glasses of hers, that what we plan, we plan out of love for her? All she can see is loss and a removal van, one she never ordered and never wanted. How does anyone explain (that word laughs me in this scenario) to someone who sincerely believes they live in the same world as the rest of us, that they need more care than is currently available; that the primary carer is worn down from an oak tree to a toothpick; that they need to be in a place that isn’t home, that never will be, and for the rest of their days? Explain, indeed. It is like expecting a Japanese dog to understand Gaelic. You get my point.
And, yet, here we are. It was always coming, but aways coming sounds far off until it stands in front of you looking expectant. Those in the know urge early investigation and research but nobody listens to that. It’s just fear-mongering. Isn’t it? After all, we are just in the early stages. No need for that nonsense. And Time wanders by, taking little steps, in a hoodwink dance. We turn away from the situation, we cope, we rant, we muddle through until all of a sudden we know something has to change. Not yet, not this minute, but the process must begin. That’s when the emotional charge is set. That is when the ticking begins and everyone hears it however much ear-blocking goes on. The fuse is lit.
There is nothing easy about a care home conversation, not with anyone in the family. Each child (and we all become the child at such a time) has varying degrees of emotional attachment to the one with dementia, the shared history, opinions, fears, regrets and anger. It is pure agony for some, a practical decision for others. The swings from this is right to THIS IS WRONG are exhausting, for all of us. How do we do this? Where does he/she go? Will they, as some feel, last about a week, a month, maybe more, when they are taken from all that they know and have loved for decades? Will this be the end for them? Of them? There is always another option, one might say to the other. They might thrive, might love it, might feel relief, but this is the Japan/Gaelic conundrum, so neither understand fully what the other is saying. Every sentence is flush with emotive energy, powerful, red raw energy, enough to rise a desert into a tornado. The damage such a tornado can do is Armageddon. Nobody survives without scars that may go on itching and bleeding for years to come.
In my conversations with other primary carers whose families divided, however short-term, I have learned that the inevitable is the inevitable. There is no right or wrong way, presuming, that is, that all decision makers involved are acting from a place of love and respect. The end is the same for all poor souls who contract this wicked invasion of self. How did you manage to hold together? I asked one such carer. We didn’t, she said, not all the way through. But we are okay now.
Okay…….now. I don’t need to ask about the lead up to okay or now because I just know it will have felt like a hundred years. A hundred years of doubt and internal battles, of resistance and tears, of family arguments and of grasping on to something, anything that says We are Fine For Now. Go away care home brochures, go away doctors and social services and occupational therapists, Go Away. We are managing.
And then, we aren’t. We can see the lights, and it is an oncoming train. But, and this is what I tell myself, when we have stepped aside and the train has passed us by, the sky is wide once more. Once the smoke and noise and scream of the tracks has become a memory, we are just us, standing alone in the middle of nowhere, the flowers still blooming around us, the birds flying above our heads and, beneath our feet, Mother Earth is rock solid. And, over there, all along that telegraph wire, the swallows fall into line, waiting for just the right breeze that will lift them into a together flight back to the sun.