Society and caregiving


I was considerably more alone in the caregiving for your spouse situation because friends that the two of you had simply avoid you—as if they weren’t already because I had MS. So, friends vanish. They really do. They don’t know what to say. They don’t know how to deal with these new people. So you’re much more alone to begin with. Friends don’t want to hear about it, they really don’t. If you’re talking about your kids, they’ll listen for hours; if you talking about a sick husband on morphine, they don’t want to hear about it. It’s too real. That could happen to them. It’s scary and it’s…there’s very, very few support groups for people caring for an ill spouse. 

There’s… you can’t talk to your children or stepchildren because it’s about their dad and your personal and physical relationship with their father— that isn’t something you talk about. It’s different with your parent. If you’re changing your parent’s diaper, it’s an expected thing because of all the jokes about how you’re born with peeing and you needing a diaper, and then you get old and you need a diaper. There’s all that standard stuff. How much do you see about one spouse or both spouses being unwell? […] There just isn’t a lot of conversation about this. But it happens. And there’s more conversation about if your spouse gets dementia than there is if your spouse gets physically ill. There’s just not a lot of conversation about it. 
There’s this… If you’re talking about being really angry at your spouse because he’s got arthritis or heart problems or he’s whatever, you’re not being a good spouse. You’re just not. You’re there in sickness and in health. Suck it up. Just do it. And yeah, it leaves you very, very isolated with all of your feelings about caregiving a spouse.

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