I met Robin a several months ago at an Alzheimer’s advocacy social — funny thing about this disease… you sort of feel protective of the people you meet who are walking down this dark and lonely path… Robin’s mom suffers from Alzheimer’s disease and up until recently, her dad was the primary caregiver.

I think what drew me to her was the circumstances behind her story…. her folks live out east and she goes back and forth when she can to support her family (been there, done that, totally sucks)… When she’s not coping with the loss of her mother, she’s a wife, a working girl, a sister, and now, soon-to-be mom.

For Robin, the joy of her pregnancy has, in some ways, been eclipsed by her mother’s disease… you see, Robin won’t have what many women enjoy — the support and guidance from her own mom… Initially, she was pretty pissed off about that and rightly so… she felt (and perhaps still feels) cheated.

I recall her posting her feelings on a Facebook group page… she pretty much ran the gamete of emotion on that single post: anger, sadness, frustration, rage, heartache — my own heart ached for her.

This is one of the more grotesque facets of this disease that no one really talks about… yet another example of how the disease robs us… not just of our parent, but of those wonderfully precious moments that have yet to come… moments like pregnancy.

I asked Robin to share her experience… she hesitated at first, but after some thought, she decided to put fingers to keyboard and share her story.

Thank you Robin for doing this…. it takes guts girlfriend. I am in your debt.

I vividly remember a day in college when my mom and I were out shopping and we saw a mother a d daughter pushing a stroller. She told me how she couldn’t wait to be a grandmother. That was 1995. I remember her asking me when I was going to settle down and start a family — the reminder that I wasn’t getting any younger — every time I saw her, every visit. And then the diagnosis came in early 2006: Early Onset Alzheimer’s Disease.

It wasn’t as if we didn’t see it coming, the signs were there. But to see it on paper, shook me to the core.

Later that year I finally met Mr. Right. I remember after we were engaged, I was visiting my parents at Christmas and she told me it would be OK if I was “a little bit pregnant” when I got married. Not the way she raised me — at all.

It was the desperation for grandchildren shining through.

During ever visit she would ask me if I was pregnant — sometimes up to seven or eight times a day. Last Christmas was the worst, because just days before going to visit, we learned that while we were pregnant and there was an 80% chance that we would lose the baby.

I couldn’t tell her I was pregnant and I couldn’t get mad at her every time she asked me if I was, even though it killed me. It wasn’t her fault, yet she had no idea how much it hurt me. The thing is, even if I did tell her, she wouldn’t remember. Getting mad would have only made her feel bad, which would have made me feel worse, and she would have kept asking anyway.

When we lost the baby, I desperately wanted to talk to her about it. I knew she had a miscarriage before I was born. She would have understood.

We’re pregnant again and everything looks like it’s going well. Not only that, but my brother is also expecting. She will not only be a grandmother once, but twice by the end of the year.

Yet, what was supposed to be a happy time for our family has turned to worry. At this point, my mom has hit late stage Alzheimer’s. There came a point when my dad could no longer take care of her, and she had to be placed in a home.

At times, she no longer knows who we are.

She will never really know her grandchildren.

I miss her terribly. I wish I could ask her questions. I wish she could be there for the birth of her grandchildren. I wish I could go shopping with her, just like that mother and daughter we saw when I was in college. She waited so long for this, she wanted to be a grandmother so badly, and she would have been a great one. I want to throw a tantrum and scream at the top of my lungs, IT’S NOT FAIR! She was always great with kids. I wish my kid would have had the opportunity to know her — the her I grew up with.

I’m angry. I’m hurt. I hate this disease with every fiber of my being. It’s robbed me of my mom. It’s robbed my mom of being a grandmother. It’s robbed my child from ever knowing his or her grandma.

 

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