Better days….

21 Thursday Jun 2012

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…

The beat goes on…

07 Thursday Jun 2012

Posted by Ann Napoletan in Falls, Mom, Pharma

≈ Leave a comment

Received a call at work today that Mom had taken a fall. She had been pacing for awhile; one of the caregivers turned to answer the phone and when she turned back around, Mom was flat on the floor, face down.

They got her up, checked range of motion, et cetera, and thankfully she is fine. By the time they called, she was lying on the sofa – quiet, comfortable, and resting.

The struggle continues with getting the meds adjusted properly. For a couple of days, she was just very quiet and almost unresponsive, then by Tuesday, she was moody again. The screaming and lashing out continues, though apparently not as bad as it was for a few days last week. This morning, they did have to give her a lorazepam to calm her. I hope we can get back to a place where that is not necessary.

Eason House faxes a report to the neurologist each Thursday night, so I’ll call his office Monday, and we’ll see what he has in mind as a next step. Not sure if she’s getting too much or not enough depakote now, but the thought is that the dosage is still not correct. Getting this drug properly regulated is rather worrisome since it can cause issues with the liver. I want to make sure they are keeping an eye on this as well.

We’re headed to Butler this weekend for my dad’s birthday, but will be back early enough Sunday that I can spend a couple of hours with her. In the meantime, keeping my fingers crossed that the next several days are uneventful.