Having worked with lots of families now who’ve been through a lot emotionally with health issues, I’ve seen what feels like the full range of families. I’ve seen distant families who never visit and don’t pick up the phone, and those who are there every second of every day. Some hit you harder than others. Today, someone I’d gotten to know over the last couple days really got to me.
An older man, the husband to his wife with dementia. She’d only had it diagnosed a few months ago, but has been suffering for years. Family suffering all the more. Especially this man, who knew his wife for 30+ years, had many incredible memories together, and now she sometimes forgets who he is. He told us she talks about her husband in front of him, with the same name, and same memories, but he isn’t even acknowledged. Even though he’s sat right next to her. It’d be upsetting to hear for anyone with a heart and tears. Someone in his generation, of his kind, wouldn’t normally ask for help, wouldn’t normally admit he was struggling. And our team were apparently the first to properly listen. He’s met countless doctors yet we were the first. It’s shocking really.
It’s so powerful to listen. We can offer help, signpost him to all the services in the area, his GP, medications, charities, all these unlimited things online. Yet, the most important thing he actually needed was someone to listen. To hear him. To empathise. It’s free to listen. It’s hard, but it doesn’t even take that long. It’s easy. Yet, why was it that we were the first in a few months to hear him?
The environment maybe helped – we’d talked to him alone, away from his family. No more having to put up a brave face. The crutch for the rest of the family. The lone wolf.
It felt admirable to see him cry. It felt like a privilege to be the one to look him in his teary eyes afterwards, heartily shake his hand and tell him that we’d sort it out. We’d look after his stresses. He left the room with visible weights off his shoulders. The relief was palpable. My feeling was that he’d cry once more after he’s left the room too, maybe at home, but this time, tears of relief. And after that, things would start becoming slightly more okay.
The situation is a tough one. Dementia is incurable. It’s progressive. It’s a loss of their mind. A loss of who they once were. And medications can only do so much to attempt to bring that person back. It might make them calmer, but does it make them more themselves? That’s what these families really want, is someone who’s familiar to them, someone who remembers them too for who they were. As I read in Oliver Sack’s ‘A man who mistook his wife for a hat’, “Who are we without memories?”
I feel incredibly lucky to be in this position to help these people. I wish we could do more. I wish there was a magic pill, a way to just click and make it all go away. But unfortunately there isn’t.
It reminded me how lucky I am to not have a family member with dementia. To be able to look after my health. I hope so anyway. Nobody chooses to have dementia. But hopefully I can do as much as I can to prevent it in myself and my family.
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