My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, […]

The other day, my friend Gary posted an NPR “All Things Considered” interview with a woman named Deirdre Sullivan to his Facebook wall. The gist of the interview was the importance of going to the funeral — a lesson that was imparted to Sullivan by her father. Sullivan says this: I believe in always going to the funeral. My father […]

When I walked into the front door of my mother’s home, a little over two weeks had past since my last visit. Because of the influenza epidemic that turned Arizona bright red on the “flu view” map of the U.S., the home issued an edict banning practically all visits until it subsided. They told me that […]

It’s another year. And I am trying to be optimistic about 2013 — optimism is not my strong suit — mostly because, at this point (knock on wood…… the gods can be very cruel), the worst thing that could happen is that she finally passes away…………………. She must be close. She can’t walk. She can’t talk. […]

I stumbled upon Susan Spencer-Wendel’s soon-to-be released book, Until I Say Good-Bye: My Year of Living with Joy early this morning. I haven’t read it yet. It doesn’t come out until next March. Still, I wanted to share because I think we’re going to be hearing a lot more about Spencer-Wendel and her tremendously touching memoir in the coming […]

If you’re reading this blog because you have a parent dying from Frontotemporal dementia, I have bad news: things are going to get worse. That is a fact. No point in sugar coating the truth, right? There is no happy ending, no light at the end of the tunnel (unless you accept death as light), […]

Dear hospice and nursing home (names of providers removed because I have enough problems, frankly), Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling […]

My mom fell. Hard. On her face. She was trying to get out of bed. She seemed OK. Shaken, but OK. I walked in the door as they were calling me to tell me about the fall. I stayed for dinner. She had a slight fever…………. could be from the fall; could be something else. […]

Hi Kathy, we’ve got the two letters from your mom’s doctors, so you can come in and sign the DNR. Oh, great. OK. What time? Noon? OK, I look forward to it. I mean, I’m not looking forward to it. Um, you know what I mean. And that is how I made the appointment to […]

A scary thought has started creeping in………………………… what if her disease is genetic? OK, there’s no family history that I know of, but still……………My mother never had a fighting chance……… she never knew she was sick…………. minus the “I can’t remember this or that” or “I don’t know where I put this or that” or […]

Dear Demi Moore (and every other well-to-do celebrity suffering from “exhaustion”), I wanted to write you this note to express my sadness at your current condition. I’ve always enjoyed your work (even the stuff that was panned, because it was you) and admired your strength — you came from nothing and created a wondrous life […]

I’ve been contemplating this idea of “walking grief” lately…….. mostly, I’m just trying to describe how I feel………….. I’m not always sad, I have sad days, but I’m not sad. On the flipside, I’m not happy either; I have happy moments; moments that make me laugh; but I would not call this phase of my […]

Just found out about another of mother’s new habits today…………….. apparently, she digs into her diaper, pulls out her own feces and tries to eat it. OK, not just tries, but has actually had some success. I sat at the counter staring at the fake granite as the owner of the home and a caregiver […]

I’ve been thinking a lot about Amanda Knox (yes, the Foxy Knoxy)…. the American student who was imprisoned for some four years in Italy…. I’ve been thinking about her because much has been written about her ordeal, what she went through day in and day out, her routines, her rituals, the things she did each and […]

My mom turns 74 today. She has no idea that today’s her birthday. She doesn’t even know I’m coming over to ring in her big 7-4. I bought her hot pink nail polish, a pair of earrings and Almond Joy. Happy Birthday mommy.

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