Sorry, this is longer than I thought it would be...
My husband died 11 months ago. He had Alzheimer's. He was quite a bit older than me. When he died at 74 we had been married almost 30 years, and for half of that time the spectre of Alzheimers was growing and progressing until its inevitable end.
His mother also died from Alzheimers and it was his greatest fear. I cared for him alone until a couple of years before his death, when it was no longer safe for him to stay at home. I thought once that watching my mother succumb to cancer was the hardest thing I'd ever have to do - I was wrong.
Sometimes there were moments of real closeness and it made my day when his face would break into a wide smile. The last words he said were to me, before he lapsed into unconsciousness were, 'I'm quite happy' and he smiled. It was his last gift to me and I will always treasure that memory. Or I hope I will, if my memory remains functional.
His loss sits like a lump of granite in the centre of my chest, but there is at least as much grief that the last years of his life were so awful.
Amongst the funny moments and the tender moments there were some truly awful times; like when he believed he was possessed by the devil, and was trying to throw a brick through someone's window to get arrested, so that he would get locked up where he couldn't hurt anyone. Or when he barricaded himself in our home because a drugs gang were coming to sieze the property. Or when he broke down in tears because he couldn't remember how to peel a banana.
I don't have any kids, and being his carer was incredibly lonely. Other people just don't get it, and you've now become the only adult in the relationship. People stop inviting you places when you can never go, and eventually they stop asking.
They think it just means your memory gets worse, but you lose executive function, and the effects on the body can be devastating. They say, 'but you know its not really him now, don't you?' Like that's supposed to be comforting. I never bought into that. If it wasn't him then who or what was he? He was different, but I refused to deny his humanity, or pretend that he had somehow already left the building. If in the end all I could do was walk with him and bear witness to his life as long as he remained, then I would do that. As our time together was coming closer to its end, every moment was precious.
He was diagnosed early, and we talked about it and his wishes while he was still able, and I would encourage everyone to talk to their nearest and dearest.
Now it's just me. No family. Even in his diminished state, I was his number one person. I'm no-one's number one now, and I'm terrified of a future where I'm as vulnerable as he was. I was his advocate, his carer, and his wife, and I'm afraid now of growing old alone with no-one to do the same for me.
I scattered his ashes on the shores of Loch Lomond on a blustery day that would have been our 30th wedding anniversary. I thought my heart would break - it felt very final - but as the wind whipped his ashes away, I remember thinking, 'you're free now.'
#AlzheimersDisease #Carer #Lonliness #Grief #bereavement
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