One day, one moment, at a time…

12 Wednesday Sep 2012

Posted by Ann Napoletan in Mom, Ruminations

Again, not much to report today. There were quiet, peaceful moments; there were moments of screaming. You don’t know what you will have from one moment to the next. When I got there after work, Mom was laying with her head on Renee’s lap, sound asleep. She sat straight up a couple of times, took a look around, then went right back to sleep. She looked comfortable and content, which certainly beats the alternative.

The girls did say she was more active today; up and walking more than she has been. But, the food (or lack of) situation remains the same. Today, just one Ensure (8 oz) and 2 or 3 crackers. The VPA doc was there for his monthly visit and said this is normal; that at this stage, food no longer tastes good, which explains the scrunched up grimace she gets on her face when she takes the tiniest bite of anything. He said the sweeter the food, the more likely they are to taste and enjoy it. But, hell, she even spit out apple pie the other day…

At this point, to be quite honest, I don’t even know what I feel anymore… I find myself beginning to have hope, then realize – hope for what? For her to be back the way she was ten days ago? I’m starting to feel like this disease has me trapped in a giant unescapable mind game that becomes increasingly complex and confusing each day.

Dealing with ALZ will wreak havoc on a person who likes to have things nice and orderly, and most importantly, planned and scheduled. If nothing else, it has taught me that we have no choice but to take things one day, one moment, at a time.

One day at a time–this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering. ~Author Unknown

Not much to report…

11 Tuesday Sep 2012

Posted by Ann Napoletan in Mom

≈ 3 Comments

When I got there after work, Mom was sleeping. She opened her eyes long enough to take a sip of juice and give me a smile, and then she was sound asleep again. She had a busy day with a visit from one of her former co-workers who is a dear friend, and then from Jess & Brandon. Still subsisting on Ensure, give or take a couple of bites of banana, but at least it’s nutrition. And, she did enjoy Baby Nico again for awhile this afternoon.

For some reason, I’ve been teary all day today. Nothing in particular, just all of it, I suppose. And when the floodgates open, look out. I’m so thankful that I work with an understanding, compassionate group of people.

So, I’m having a glass of wine with some nice, sharp Parmigiano-Reggiano, and I can feel the edge coming off a bit. When I got to Eason House, Susie had saved a plate for me, and considering I was planning on my old standby (cereal), I didn’t turn it down. Actually, it tasted delicious.

Tomorrow, the VPA physician will be at the house for his regular monthly visit, so it will be interesting to see what he has to say, if anything. I talked to him last week, and to say I wasn’t impressed with his bedside manner would be an understatement. When a doctor – or anyone for that matter – says to an ALZ family, “Well, this is just how the disease goes…,” I would like to respond, “Oh really? Hm, I had no effing idea…” Speaking of compassion, some of these medical professionals could use a little, too…

The “H” Word… Redux

10 Monday Sep 2012

Posted by Ann Napoletan in Heartland, Hospice, Mom

≈ 2 Comments

When I wrote this post last month, little did I know we would be considering hospice so soon. I do believe that everything happens for a reason, though, so perhaps God put that seminar in my path right then because He knew…

Today, we met with **Heartland Hospice. They came out to Eason House, met Mom, and we talked for about two hours. They are going to start the process of collecting medical records and such so that she can be assessed for eligibility. It sounds like they can have a nurse out as early as end of week to start working with her.

After talking with Tim at length last week, I decided to try Heartland based upon his glowing recommendation of their work. I truly hope they are as wonderful as they sound… Everything lines up with what I heard in the HomeReach presentation, from the breadth and depth of services provided, to the overall philosophy: to give people the best quality of life possible for as long as possible.

It’s comforting to know that we have the staff at Eason House to provide us with ongoing feedback and alert us of anything that might be problematic. Entering this new phase and bringing new people on board is scary.

Mom had another comparatively good day today. She was sitting at the table when I arrived around lunchtime, and stayed there for a good long while. When the baby came in, she reacted in a very positive manner, laughing and making faces, whereas at the end of last week, she wasn’t interested in him at all. As far as food/drink for the day, when I left around 6pm, she’d had about half a banana, 8 oz of Ensure, and half a glass of tea. She had taken her dinner time meds and was sound asleep on the couch.

We shall see what tomorrow holds…

** Postscript: Heartland Hospice was hired and fired the same day. Lesson: Never take anything at face value. Stay involved and be aware of what is going on at every turn. Read about our experience –> here. There may be some wonderful hospice services out there, but never assume anything.