The future and caregiving

Well, if you’re living with somebody with a disease that you know is going to get worse, it’s really important to try and talk to people who are already at that point and get a sense of what needs you’re going to have to meet. We tried to design this place with everything in mind for the future, but it’s amazing how many things are still a problem—that if he had been where he’s at now when we were designing the place, we would have designed differently. And that was even with designing, working with an accessibility design consultant too, who brought all sorts of things into it that we wouldn’t have thought of.

So if you are making any kind of changes like moving to a different place or, or whatever, try and speak to somebody who’s in—and I think it’s incumbent on the caregiving person to do this—to speak to somebody who’s in an advanced stage and their caregiver to try and get that kind of information. Because I know my husband was eternally optimistic, and even though I could project the needs for certain things in the future when he got worse, he would say “Oh no, no we won’t need that.” Well anything I projected certainly came to be true, and there were things I didn’t project. […] It’s too bad, if you’re going to the trouble of buying a place to meet the needs, or renovating, or building, to then 10 years into it later you’re suddenly thinking, “Oh, there’s all sorts of different things we should have done differently.”

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