Crazy Town

Dementia makes you crazy.

I'm not talking about the person diagnosed with the disease; I'm talking about the caregiver. I'm talking about myself. If there's a sane caregiver out there, I'd like to meet them. Or maybe not, because then I'd feel even worse.

Lately I feel like my emotions are all over the place. Sometimes I feel strong, resolute. I am proactive with my work in the foundation, which gives me a focus and a purpose. I am patient with my mom and I get the job done without breaking. I try to focus on all of the good things I have going on in my life, things that bring me joy: my beautiful kids, my incredible husband, my amazing and supportive friends, my home-based sewing business (which doubles as my therapy time!).

But mostly, I just put on a brave face as I face the day, going to play dates, escorting the kids to their sporting events, attending church groups. I wear a smile on my face but inside, my heart is ripping into two. The truth is, my mom is always on my mind. Always. The sadness always lingers with me, like a black cloud. I worry and think about her when I'm away and miss her when I'm with her.

It's a complicated thing-to grieve for someone who is still living. I don't think there's any way to describe it to a person who has never experienced it. You grieve for the loss of the person that was once there, while still holding on to the physical being that remains. The grief is relentless and suffocating at times. I feel on edge; any unpleasant thing can bring me to tears. I am a ticking time bomb; one wrong move can set me off.

It's a continual rollercoaster of emotions; one day I'm up, the next I'm down.

Over the weekend, we received some unpleasant news that kind of sent me into a downward spiral. It would have been upsetting even if my life weren't plagued by dementia, but that dark, hovering raincloud (called dementia) met with this other passing, dark cloud and together they brewed a nasty storm. I stewed about this particular situation for days and I was left feeling, hurt, sad, and angry. Very angry. I'm not even saying my anger is justified, but when you're already slightly unbalanced it's as if the senses are heightened and what might start out as disappointment or sadness can easily fester into some other (stronger) emotion. For me, it was a lot of anger. Anger at the situation but probably mostly triggered by this disease. I'm angry that dementia has made me such a basket case. I'm angry for the strain it has put on some of my relationships, and at the people who I feel have let me down over the years. And most of all I am ANGRY that this disease struck my mom. I am angry for her, that she has been robbed of what is supposed to be the best years of her life. I am angry that my dad is losing the love of his life, for the pain and the helplessness he feels at watching her slowly fade away each and every day; for the helplessness I feel for not being able to fix it and make it better. I am angry that I've lost my mother, who was so much more than my mom; she was also my friend, my confidant and therapist, the one person that I could talk to without fear of judgment, who could give me advice or help me navigate my way through a problem, the one person who loved me and thought the world of me. I am angry that my children have lost their grandma and will never experience what I had growing up: the grandma to spend the night with, to bake cookies with, to have at every one of their music recitals or sports events or any important life event, to be their biggest cheerleader and to be their refuge from their "mean" parents. This is the kind of grandma I had and this is the kind of grandma that my mom wanted to be. And I'm ANGRY that was all taken away from us.

I don't usually post negativity on my blog; I like to keep it away and I don't want to sound like a whiny, sniveling baby. I'm not the first person to lose their mom at a young age and I'm certainly not the last. At the same time, I think it's only fair to my readers to be real. Somebody out there might be reading this while riding their own rollercoaster of emotions and I think it's important for them to know that they aren't alone in this. Because so often with this disease, we feel alone. I feel alone. You aren't crazy. Or maybe you are. But if you are, I'm right there with you!

The Prodigal Blow Dryer

A month or two ago, mom's blow dryer died. For those of you who read regularly, you know of mom's attachment to her blow dryer. My dad thought about replacing it, but it really was for the best that it disappeared as it was becoming a problem. Consequently, mom complains daily about us "losing" her blow dryer. Part of her resistance to get into the shower and wash her hair is due to the fact that she has no blow dryer for her hair (and wet body).

For weeks now, I've been meaning to bring over my blow dryer on the days I shower her. By the time I get the kids off to school with everything they need, I forget to grab my blow dryer (and I head over to her house straight after drop off). I was talking to my dad about it and it turned out that he found a spare blow dryer. He tucked it away in the spare room for me to use this morning on mom's hair.

With how much mom's been missing her blow dryer, you would've thought that she'd be ecstatic to see me walk in the bathroom with a blow dryer in hand. It didn't go over exactly as I thought. To start with, during her shower she continued her mumbled complaints of having no blow dryer, despite me telling her, and even showing her, that I brought my blow dryer over. When she got out of the shower, she went about her usual routine of applying make up and brushing her hair and I turned the blow dryer on and attempted to brush-dry her hair while she was readying herself. She didn't seem to notice whatsoever that I had the blow dryer. In fact, when she was done with what she was doing, she turned and walked herself over to her bed, plopping down and mumbling again about how "he lost my blow dryer"!

For five minutes I waved the blow dryer in front of mom, telling her I brought my blow dryer and coaxing her back over to dry her hair. She stared back at me with no comprehension in her eyes. Then, suddenly, she jumped up, looked at the blow dryer for a second before grabbing it from my hand and attempted to dry her hair. After a couple quick minutes, she turned the blow dryer off so I quickly grabbed it, turned it back on and continued drying her hair for as long as she would let me.

At one point, mom's lips curled down and her eyes became watery as she mumbled something I couldn't understand. It looked as though she was going to cry. She's done this quite a few time recently and I'm not sure what to make of it but it appears that she is sad or upset about something.

"What's wrong mom? What's the matter?" I asked. I couldn't understand what she was saying but it hurt my heart to see her visibly upset over something, especially not knowing what I could do to help her.

In the end, we got her hair mostly dry, but to be honest I'm not really sure if she noticed the difference! I'm not sure if it will click over time or if she will forever mourn the loss of her blow dryer.