To eat… or not to eat…

24 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma, Ruminations, Weight Loss

Really noticed today how thin Mom’s arms are looking. She has definitely lost more weight. Apparently eating wasn’t high on her list of priorities this past week. Meds, perhaps? Definitely a possibility, but who knows for sure. Doc took her completely off the Depakote, which is surprising since she had been on 250mg for a long time before he upped it to 500mg a couple of weeks ago. I definitely think that was what was sedating her, but I didn’t expect him to d/c it altogether. Will see him on Wednesday and ask about that. Also increased Inderal to 10mg, 3x day.

So, at least this week, she was more “with it.” Tired, but certainly not sedated. Definitely back on the emotional/behavioral roller coaster, but I’d prefer that to sedation any day. She’s back to covering the full range on a daily (sometimes hourly) basis – from laughing to crying to screaming to dancing and anything else she can come up with. It sounds like the highlight of her day today was going for a little ride in Susie’s convertible, with the top down, of course. Just thinking about that makes me happy!

She’s at a point where she won’t eat when the other ladies are at the table. Too much commotion, and too many people in her business. I really didn’t think she was going to eat at all today, but Susie finally followed her around with a bowl of jello and Cool Whip until she got her to take a few bites. Sure enough, Mom walked over to the table on her own and sat down.

I sat down and fed her, and surprisingly she ate her entire plate of lasagna and most of her garlic bread, plus she finished the jello and a glass of ice water. She doesn’t eat by herself much at all anymore; having someone feed her has become pretty much the norm. When she does try to eat herself, it’s always with her fingers – even if it’s lasagna. Today when she stuck her hands in there, I let her go. WTF, at least she was eating…

As is so often the case, I left Eason House today wondering how in the hell we arrived at this point. I look at her, and quite truthfully, my mind just can’t grasp any of it. But today, she smiled at me, laughed a little, and she was full of kisses, so I’ll hang onto the good and leave the bad behind.

Until next time… Carpe diem…

Better days….

21 Thursday Jun 2012

Posted by Ann Napoletan in Mom, Pharma

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While there have still been some rough patches over the past couple of days, I’m relieved to say that Mom seems to be on a slightly more even keel. No change in meds, so the mystery remains just that… a mystery.

When I was there last, she was making all kinds of funny faces and I captured a few here. So nice to see her smiling again.

A quick story from that same visit. When I went into the house, she was finishing her dessert (chocolate cake), and it was pretty much everywhere. Susie got a wet cloth and took one of Mom’s hands, wiped it off, then Mom gave Susie her other hand without being asked. She cleaned that, then oh-so-gently wiped the crumbs and frosting from her face. My mom laid her head back on the chair, looked up at Susie so lovingly, and said very sweetly, “Thank you…”

I had to fight back tears. The poignance of that moment was indescribable. There’s that oh-so-familiar dichotomy – tragic and heartwarming all at the same time. This is a scene you would expect to see between a very young child and her caregiver… It’s so hard to wrap your head around the reality and insanity of the entire situation sometimes. These are the moments I’ll remember forever, though.

The Mystery of Pharmacology, The Mystery of Life

17 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma, Ruminations

≈ 2 Comments

Another week has passed, and we are still struggling. Today, mom was completely unresponsive and couldn’t keep her eyes open at the dinner table. She didn’t eat a thing; I couldn’t even interest her in a bite of chocolate cake.

I read through the log book for this past week, and the consensus is that something she is taking is acting as a sedative. I suspect the Depakote, since that was bumped up to 500 mg (from 250mg), but the Inderal is also a possible culprit. Doc wanted to double to 20mg this week, but due to the increase in lethargy, Tim advised against that, and Dr. F. agreed.

To further confound things, she is now taking Bactrim for a UTI, and one of its side effects is loss of appetite. It had been awhile since I’d looked at her full med list, and when I did so yesterday, I thought to myself, “With all of these drugs working with and against each other, it’s a miracle things aren’t worse….”

So, here I sit ‘googling’ all of the meds, trying to solve the mystery that the great medical minds can’t seem to solve… How silly.

It’s days like today when I really have to wonder why. Days like today, quality of life is zero – or below. At least when she’s happy, you can rationalize that she is having some moments of joy. But, today – no. Tried to get her up to take her to the couch so she could be more comfortable, and she screamed at me. Tried to give her some cake, and she tightly sealed her lips. Talked with the girls, and she clapped her hands over her ears, then pounded the table in frustration. There’s not a damn bit of joy or life quality in any of that.

I’ve said it time and time again over the past 5 years; I know it is not our place to question, but it’s very, very difficult to understand the point in all of this. Joy – gone. Dignity – gone. Peace – gone. I barely even remember the person my mom used to be. And I’ll go to my grave wondering why; what the hell is the point of this disease?

She lived 68 good years before the signs began. Since then, she has lived 8 more, declining little by little with each hour of each day. While I often wonder how much longer she will have to bear living in this dark, frightening place, I also don’t want to let go of her… I can’t ask her advice any more, or have a conversation. We can’t laugh like we used to or reminisce about years gone by. But, I can still hold her hand… and that’s something, right? It’s something…

I miss her so much…