Sunday, July 15, 2007

One more day down, a lifetime to go...

Today contained no crisis. Praise the Lord. We've had way too many days lately where things have just fallen apart, and it's nice to have a calm day with minimal upset. Still though, there have been plenty of reminders today that Mom is changing and there's nothing we can do about it. I guess this is just how it's going to be now. Knowing that almost makes me excited to go back to school and not have to face this on a daily basis, but then the guilt kicks in because I really should be with my mom and I certainly shouldn't want to leave Brian behind to deal with this alone.

Sensory overload

One big reminder that Mom is struggling came during church this morning. In the middle of one of the songs during worship time, Mom sat down. I kept singing but watched her out of the corner of my eye, thinking that maybe she was just tired of standing or that she was being touched by the music and getting emotional. When the song was over and I sat down, however, I realized that something was wrong. I heard her tell Brian, "There's just too much going on and it's too loud." Now, the music was no louder than it ever is. The song did contain a part when the chorus and verse were being sung overtop each other so maybe that was hard for her to follow, but I didn't think it would be bothersome. On the contrary, she was visibly troubled. She crossed her legs and held her arms across her chest, head down, forehead wrinkled up. She stayed like that through the entire rest of the service. Even when David was preaching, she never once looked up at him. At times she would bounce her leg or shake her foot nervously. The tension radiating off of her was so overwhelming that I found myself feeling nervous too...or at least very concerned as to whether or not she was going to make it through the service.

When we got home, Mom seemed to be fine again. She talked about it a little bit at lunch, though, and asked Brian and I if the music seemed especially loud or if David was speaking more loudly than usual. We kind of looked at each other, not wanting to say no and upset Mom, but knowing that nothing was different. Our silence gave her the answer, and this look came across her face...the look that says, "Oh. I guess I'm confused again. I'll just shut up so no one thinks I'm stupid." Of course we don't think she's stupid, but I can always tell that she thinks we think so.

Continuing aftermath

Mom's stomach has really been bothering her the last couple days, to the point where she doesn't want to eat (with greater intensity than usual). She is in a lot of pain and has been laying around quite a bit because of it. No medications have been changed with the exception of adding Rozerim to reset her circadiam rhythm so she can actually sleep at night. Brian checked its side effects, and we ruled that out. Mom said she thinks she is still experiencing problems from the day she got so upset. And I can't help feeling like it's my fault that it all happened.

Bonding through heartache

Good news is, though, I feel like Brian and I have really bonded recently. We've gotten extra good at reading each other's expressions without Mom really even knowing what's going on, which is uber helpful. Stares, sighs, and raised eyebrows can now deliver paragraphs worth of information. And we hug a lot more now. I've always been a hugger; to me, there are precious few things on earth better than a good hug from someone you love. I think Brian's and my hugs do a lot for both of us, because we are reminded that we're not alone. And what a huge thing that is right now.

There is something so unique to dealing with Alzheimer's and other dementia-related illnesses. Only people who have experienced it can understand it. That's one of the worst parts about it, I think...the isolation that comes from feeling like nobody gets it. And a lot of people don't want to get it. Even good friends sometimes don't want to take the time to try to understand what it's like, so home becomes this box that no one can peer into and only the people in the box know what it takes to get through a week there. That's why I don't like telling people for the first time that my mom has Alzheimer's. I usually feel like I might as well have told them that she has the flu, for the way they respond. "Oh, that's too bad. I'm sorry honey," they say. And then when I am still trying to deal with it a few weeks later, they're surprised, like I should be over it or something. People like that drive me nuts.


Tomorrow is Monday. That means another week looms ahead. I wonder if I'll ever get back to the place where I'm excited to begin a new week, instead of dreading the emotional upheavals that will invariably occur? One can only hope. I welcome your comments and thank you for stopping by.


Lori1955 said...

Kelsi, what a wonderful blog. Thank you for sharing on the caregivers board. I hope you don't mind but I would like to add a link to your blog on mine.

Anonymous said...

Kelsi, as I sit here and catch up on the blogs that I have missed this past week, over and over again I want to give you a hug and tell you that you do not cause bad days for your mom. They are not your fault. Sometimes they just happen over things that are completely out of your control. But even as you write about the difficulties that you endure each day, your love and devotion to your mom is so evident and that is a beautiful thing. The rose among thorns at the moment.
Still praying for you,

flintysooner said...

Hi Kelsi,

Your blog is really nice. I've very much enjoyed reading your posts. I like your title a lot, too.

Just wanted you to know I have you bookmarked. Also, appreciate your very kind comment.

Please take care of yourself.

Feel for you.

Kelsi said...

Thank you all for the very kind comments. To Penthos especially, your words are beautiful and I am so grateful for your prayers. Please keep reading and's comforting to hear back when I send my words out into the void that is the web.