Is this a dream?

20 Sunday May 2012

Posted by Ann Napoletan in Mom, Ruminations

Despite a rocky start, I had a pretty good visit with mom today. When I went in, I could tell immediately that she was agitated and out of sorts. She didn’t smile; in fact, she gave me a thoroughly disgusted look. I asked her to come sit with me, and she sternly answered, “NO!”

I turned to the girls and asked if she was having a bad day. Yep, she had been this way since waking up this morning. Okay then. Bad day, it is.

After giving her a couple of minutes, I tried again. This time, she did come over and sit with me on the couch. She was very chatty, but I couldn’t make heads or tails of what she was saying, except for the fact that she was bothered by something someone was doing. REALLY bothered. After talking quietly to her for awhile, she settled down, and from that point on was very loving. She kept stroking my face, hands, and shoulders, and at one point patted my leg just the way she used to, bringing back memories of happier times.

We sat outside on the deck for awhile, which she really enjoys. When I think back to her being at Outlook and trapped inside, unable to enjoy beautiful days like this, it makes me sad. I’m so thankful that at Eason House, she can go outdoors anytime she pleases. I believe that feeling of freedom makes a big difference in her quality of life. While we sat, she told me several times how pretty it was as she gestured toward the lovely wooded yard and ravine.

It was one of those days for me, though. I wasn’t feeling great to begin with, and I suppose the reality of the situation got the best of me. Seeing her this way; so childlike. Unable to communicate her thoughts beyond a word or two. Wandering aimlessly at times, and lighting up like a Christmas tree when one of the girls handed Dora to her… I don’t know how to describe it. “Surreal” is fitting, but isn’t a powerful enough word to describe the depth of it all. Sometimes I can’t believe any of this is real. Or that the woman in front of me is my mother…

National Alzheimer’s Plan: A huge step in the right direction.

15 Tuesday May 2012

Posted by Ann Napoletan in NAPA, Research

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Today, the Obama Administration finalized the first ever national strategy on Alzheimer’s and associated dementias. You can read more about the historic National Alzheimer’s Plan in this USA Today article –> Clock Ticking With New Plan to Fight Alzheimer’s.

What a massive step toward putting forth the resources necessary for major research projects and also to help families currently dealing with the disease – right here, right now. The strategy puts a timeline around finding effective treatments and will shine a spotlight on our fight against Alzheimer’s like never before.

Thanks to research, great advances have been made in treating cancer, and perhaps we are nearing a day when the same will be true for this disease that robs so many people of their so-called golden years, and robs us of our parents, grandparents, spouses, and other family members and friends.

Initially, the plan calls for:

An $8 million study around an insulin nasal spray shown to be a potentially viable treatment for ALZ.
A $16 million contribution to an international study examining whether early treatment of amyloid (brain plaque) could head off the disease.
Government funded training for physicians and other medical professionals, focusing on effective ways to care for ALZ patients and their families.

In concert with National Alzheimer’s Plan, a new website has been established to provide “one-stop shopping” related to research, care, treatment, and community resources. At first blush, this appears to be a fabulous tool for caregivers, so please share the URL with anyone who might need it.

Here’s to a light at the end of the tunnel… It may still be a very dim light, but it’s a light nonetheless. We’ll continue to keep the faith, spread the word, and watch things unfold over the next few years.

If you’d like to read the National Alzheimer’s Plan in its entirety, it can be found here.

Until next time… Carpe diem…

You’re not alone…

14 Monday May 2012

Posted by Ann Napoletan in Blogging, Caregivers, Helpful Resources

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There are so many wonderful blogs out there providing great resources and the peace of mind associated with knowing you aren’t alone. Sometimes, that’s just what we need – to know that the thoughts we’re having, the ups, the downs, the guilt, and the uncertainty – they’re all a “normal” part of this journey. No matter how you’re feeling at any given moment, someone else has felt that way, too. It’s so important to just ride it out and not be too hard on yourself.

Today, I ran across this article from the Fisher Center for Alzheimer’s Research Foundation. The author, Gary Joseph LeBlanc, was the primary caregiver for his father who suffered from Alzheimer’s disease. He recently published a collection of his articles in a book titled, “Staying Afloat in a Sea of Forgetfulness.”

I hope Gary’s words and experience will provide comfort to readers who find themselves traveling their own Alzheimer’s journey.