My Personal Journey

Riding the Alzheimer’s rollercoaster

It’s Saturday about 11:15 and every time I don’t know what our next 3 hours are going to be like.

My mother-in-law has Alzheimers. Not the advanced kind. She knows who we are, remembers our names, and remembers a lot from fifty years ago but she doesn’t know what day it is and what she wants to eat for lunch — and we don’t know who she is going to be each day.

Today I went to pick her up for our Saturday lunch date. She was in bed and she didn’t want to get up. She hadn’t eaten breakfast and needed to eat (not eating makes doing anything else tough) and I knew if I listened to her and left, as she was telling me to, she’d lie in bed and cry, because I’d left. So I got her up, cleaned her up, dressed her, cheered her along in the car as it poured down on us, and took her to meet my husband Bret at one of her favorite restaurants… but today she decided not to talk to us at lunch. No idea why, but she wasn’t going to talk.

Last Saturday started out the same, but once I got her to the restaurant she picked up, was cheerful, and, had you joined us, you would not have known she’s been struggling with her mind. But because she was well she remembered the week before…

That week, two weeks ago, Margit and I went out to lunch with my father who came along to help me. He likes all my attention, but understands when I am with her that I need to be focused on her to make sure she’s OK. To hold her hand, to help her when she decides to wash her steak in her water, or put ice onto her pasta, or confuse her plate with her food. And that week we ran into my company’s lead investor at the restaurant. He also commands my attention, and expects me to be brilliant and together and a CEO, which is hard to be when your attention is already torn two ways. But I did give him 5 minutes of my attention and then paid for it.

As I took her home my mother-in-law decided to punish me. She told me I wanted her dead, and I wanted to hang her from a tree until she was dead, and maybe I should just hang her from a tree because clearly I didn’t care about her and just wanted to dump her back in “that place”. She was angry that I was going back to my father (who was leaving for England the next day) and decided to lash out – until I got her back to Sunrise and hugged her and told her Bret would be there on Tuesday, and  I’d be back next week and then she told me she did appreciate that we were taking care of her.

It’s a roller coaster. A never ending cycle of good days, bad days, cruel days, sleepy days, demanding days and on every day we’re with her I watch Bret watch her with tension in his face and sadness because even if you’ve never had much of a relationship with your parent, watching them struggle with their mind and be deeply unhappy is so very painful. But he’s decided he’s going to take care of her – she’s one of the lucky ones.

Here we are in the center of technology, with miraculous advances every day, and yet we can’t stop our minds deteriorating. I know we’re not alone. Every family that experiences Alzheimer’s experiences the roller coaster. It’s awful. Surely if we can invent the smart phone, and google glass, and an electric car that can go 300 miles, surely we can find a way to prevent Alzheimer’s? Seems to me all those ad dollars could go to better use than selling sugar water.