One of the hardest things about my dad getting dementia has been witnessing the effect on my mom’s social life. There are people who have disappeared from my parents’ lives following his diagnosis. I’m not sure if it’s the fact that he was so young and it made them face their own mortality earlier than they’d planned, or their fear of his sometimes strange behavior in the early phases. Maybe it’s that they don’t know how to “help” so they hide, not realizing that the best way to help is just to continue to offer friendship to my mom. The number of years over which this has stretched also kind of stretches people’s patience and generosity, I think. I recognize that, especially now, it’s hard to know how to support my mom when she’s a widow who is not yet widowed. But the people who have pulled back have no idea that what they’re doing is making things even harder on my mom. Their fear hurts her, because it makes her feel like she’s losing her friends, her support network. It makes her feel like they don’t really value her friendship. If someone had let her down before, who would she have talked to seeking solace? My dad. That’s no longer and option, and I’m doing my best to take his place, but I don’t live there, so she can’t come home at the end of a hard day and cry in my arms. She’s already losing her best friend to dementia, so to not have other friends step up makes her feel alone, abandoned. Even now, when he’s been enrolled with hospice – a time I would have thought would have had people coming out of the woodwork to offer words of comfort – friends continue to desert.
My dad was always the social organizer, the life of the party. I worried that my mom would become a hermit of sorts, but she’s made an effort to reach out and has crafted her own social life. The reason she’s been able to do this is because of the people who have stayed. Those people – the ones who have not shied away from the ugliness of the disease or the awkwardness of interacting with my dad – those are the people who made her life bearable in the earlier phases. Those are the people who hold her up when it gets really hard. They’re the people who don’t wait for her to ask if they want to do something, but instead invite her over for dinner or out to a play, who don’t treat her like a pariah who might give them dementia, those are the ones I respect. That takes courage. And loyalty. And compassion. A lot of her friends are at retirement age, so are traveling and aren’t available. It’s not their fault, but it’s bad timing for her. So the ones that make an effort to see her when they are in town, even if only briefly, help substitute some of the love she’s lost. The neighbors who have stepped in and welcomed her into their families are wonderful. The friends that organized trips to Europe together get gold stars. The ones that make plans and stick to them – understanding how awful it makes her feel when her plans get cancelled and she doesn’t have a husband to go home and snuggle with – are bright shining rays of love.
It’s a sad fact that misfortune shows you who your real friends are. And some people will totally disappoint you. But there are also people who step up and surprise you. People you didn’t even know cared. They extend the invitations, offer the hugs, and just let you know they’re here if you need them. They know they can’t fix it or make the loneliness go away, but they keep sticking around, and jumping up and down and waving periodically to help you find your way back to them, and saying, “We’re here when you want us to be here.”
To the ones who stay, thank you. If you’re recognizing that you’re one of the ones who haven’t, it’s not too late. If you feel guilty that you let my dad down, make up for it by lifting my mom up.
If you don’t know us and this doesn’t pertain to you, stop and think about other situations in your life when you’ve chosen to face discomfort or fear to remain a good friend, or maybe the times you fell a little short. Please don’t let shame about falling short stop you from starting again and making up for it. In the end, you’ll be a lot happier avoiding the guilt you’ll feel when someone dies and you know you let them down in some way. I’ve learned that the hard way. Send a card. Make a call. Meet for coffee. Invite someone over for dinner. Drop cookies off at the house for no real reason. Rise. Stay. Be there. It’s worth it and lifts someone when you have no idea how down they really are because they’re busy putting on a brave face. Stay. Be there. Stay.