My mother-in-law has dementia. She had been pretty good at hiding her slow cognitive decline for a long time, but gradually, not even those of us who would have preferred to be in denial could avoid the truth. We needed to move Nancy out of her home and into a community where she could receive care and help with things like remembering her medications.

I went down three years ago, at about this time of the year, to help my sister-in-law make the move and set up Nancy’s new apartment. We could bring some things- but not everything to her home. And there were a lot of things we needed to go through, deciding what needed to be saved, given to siblings, relatives, friends or simply donated or thrown out. Having been through that, cleaning out my dad’s home after he passed away, I had a little experience with it- and it’s never easy.

Nancy is now in a great community, but she will need to move into memory care soon. We can’t avoid the fact that she’s having more problems, and needs more supervision. It’s no longer that she can’t figure out how to watch TV or tell the difference between a show and commercials. It’s getting confused, getting lost, or forgetting what she’s doing. I think it can be scary for her, a lot of the time, and that’s the one thing I wish I could fix for her- make it so she isn’t scared or worried so much of the time.

I work with a senior living community for my “day job” in digital marketing, and I talk to residents who have had spouses, friends and parents who have had various forms of dementia. The stories are all similar. There is a sadness about gradually losing someone you love, while their body is still there. You get to see glimpses of them from time to time, the sense of humor, the smile, the recognition of voices, or stories- and that feels amazing. But there are times you watch them wander in the deep, dark woods of their mind, a vacant expression and a look of being lost in the middle of something like a meal, no longer sure of what they like and what they don’t, and not sure what happens next.

When we get the periodic calls that Nancy has had an incident and ends up going to the hospital or has a crisis that needs to be addressed, I feel badly that I can’t be there- she lives in Florida, close to my sister in law, and all we can do is be supportive on the phone, keep in touch, and wait for the next visit. I want to be close and help- to help Nancy as she helped me when the boys were born, coming to stay, or coming for visits and always being someone I could talk to, confide in, and ask questions. She loved all of her family unconditionally and with an acceptance of all your good points and warts- and loved them all.

I miss Nancy. She’s still here, and we can talk to her on the phone, but it’s not the same. It now feels like talking at her than with her, more and more. We look for her and rejoice when we see the real her, but those glimpses are getting farther between, and no one knows when her mind will finally just give up, I guess.

Dementia is a horrible, hard disease that is difficult for the whole family.

All I can say is never take your loved ones for granted if you can help it. They may be gone before you know it- even if they are still here. Dementia robs many people of years of joy with their family. But remember people with dementia still have feelings- they love you, and feel things deeply, even if what they say doesn’t make much sense. And if you can just go with them to the place they are every once on a while, you will get to see them again, and that is worth the trip.