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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Smiles

Another Day at Kobacker…

10 Monday Dec 2012

Posted by Ann Napoletan in Care Options, HomeReach, Hospice, Kobacker House, Mom, Pharma, Ruminations, Smiles, Support system

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photo(12)Things are happening so fast… and yet so very, very slowly…

It was good to have the support of several of our closest friends today. Jess and I needed it. Badly. It was our most emotional day since arriving at Kobacker. Mom hasn’t had anything to eat or drink – aside from a few drops of water – since that small cup of ice cream on Friday. She’s fading…

Lorazepam and buspar were not enough last night, so she had morphine once overnight and once early this morning. When I arrived, her agitation was gradually increasing; she was grimacing as though in pain, crying out, and moaning. Within a short time, the nurse practitioner came in and we decided to schedule the morphine for 2.5mg every 12 hours, with breakthrough doses if needed. Lorazepam is now 0.5mg 3x daily and 1.5mg at bedtime. Goal, a restful night with perhaps some more clarity through the day.

It’s impossible to tell if she sees us. When her eyes are open, she stares off into the distance – even with my face inches away, I can’t tell whether or not she is seeing me. I do believe she hears us, though. As I tried to soothe her throughout the day, I felt as though she responded ever so slightly to my voice.

Circle of Life

Circle of Life

I can’t say enough about the staff and volunteers at Kobacker House. The kindness and compassion in that building is palpable, and there is a certain sense of peace in a time of upheaval and raging chaos. After things settle, I’ll certainly think long and hard about volunteering there.

As much as I hated leaving Eason House on Thursday night, the fact is, we need a nurse just outside the door right now – neither Jess nor I have ever been through this. We don’t know what to watch for or what to expect… just knowing they are there when needed helps.

And, we were so lucky to have Ciara back today from Comfort Keepers. After two days, I feel like I’ve known this amazing 22-year old girl forever. This is one incredible human being. I would love to see her working at one of Tim’s houses; she would be perfect. I’m amazed at how much she has connected with my mom in such a short time. Today, we looked at pictures together; she wanted to see the Marilyn everyone knows and loves – the funny faces and personality that could light up a room. It felt good to share that…

Again, she kept notes for me all day. There was a block of time where Jess and I needed to be step outside the room, gather ourselves, and talk for awhile, and I had no qualms about that knowing our angel from Comfort Keepers was at Mom’s side. Before leaving for the night, she combed mom’s hair, carefully adjusted the covers, and shared some of the things that mom likes with the overnight sitter. Then, she gave me a hug and said she’d call the office tomorrow (per my request) to see if they can assign her to us again based on her availability.

Unfortunately, I missed Shelly’s visit this morning, but I’m glad she got to spend some time with Mom. This afternoon, Rachael, Debby, and Sheila were all by, and tears flowed in abundance. What would we do without friends? They are the ones who never waver… they don’t know the meaning of “fair weather friends,” they’re by our side through thick and thin. While it’s easy to hang around for the good times, it’s the real friends who don’t disappear when the going gets tough. I only hope I have the opportunity to return all of the kindness that has been shown to me…

Best friends never waver...

Best friends never waver…

Tomorrow, I will be looking into extended FMLA leave from work. I’m just in no frame of mind to be able to focus on the simplest of things let alone the super-charged stressful environment at work. I can’t even focus long enough to read more than a dozen emails with any sort of clarity.

I feel drained, and I’m most scared of where I’ll be when it’s all over. I don’t even remember what life was like pre-Alzheimer’s. Since 2004, this has been a part of our lives, and certainly since 2006, it has consumed us. The past year has just been a blur. Right now we’re surrounded by the constant love and support of friends far and near… eventually, things will return to a strange new “normal.” I worry about how I’ll handle that. Still, I’m trying very hard to stay in the moment and focus on one day – one hour – at a time.

Jess decided to stay here at the house this week, and I think it will be good for us to have each other close. Today, we both fell apart, yet even through that, we were able to lean on one another. Not sure where either of us would be without the other…

deer

Deer literally right outside the window at Kobacker House today…

lydan3

Lydan hard at work at KH.

lydan2

No matter what’s going on, kids and dogs can bring a smile to just about anyone.

 

 

photo(13)

After leaving KH tonight, we had dinner with Courtney and the kids… nice break from reality.

photo(11)

That sweet little face makes me smile…

 

 

 

 

 

 

 

 

 

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Joyous Memories

09 Sunday Dec 2012

Posted by Ann Napoletan in Eason House, Mom, Music and Art, Smiles, Support system

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Not sure I truly appreciated how much I’d treasure these… until now.

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Bittersweet

02 Sunday Dec 2012

Posted by Ann Napoletan in Family, Mom, Ruminations, Smiles, Support system

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photo(7)
If this photo doesn’t touch your heart, you may not have one.

This is my lifelong best friend sitting with Mom today. Ah, the memories we share! Debby practically lived with us during those turbulent teen years. In fact, she actually did move in once for a few days, dresser drawers and all. (((Smile))) My mom was her second mother and loved her like a daughter (got just as mad at her as her own daughter sometimes, too).

Debby is one of the few who can appreciate the “look that could kill” that we still see from Mom from time to time and the way she says “NO!” when she means business.

Having gone through this with her own grandparents, I can imagine how difficult it is to see Mom this way, yet she is here for us – the good, bad, and the ugly. And that means the absolute world to me, to Jess, and in some sense, to my mom – even now. I firmly believe that although she may not be able to place the face, she knows Debby’s love.

When it is all said and done, Debby, I’ll never forget your love for my mom and your unwavering support over the years. Love you so much.

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