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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Hospice

Completely Overwhelmed…

11 Tuesday Dec 2012

Posted by Ann Napoletan in HomeReach, Hospice, Kobacker House, Mom, Ruminations, Support system

≈ 1 Comment

I didn’t go to bed until 4am, and here it is 12:30am again and I’m still up. I can’t seem to get anything done. My brain won’t shut off, but it isn’t doing a very good job of organizing all of the traffic it’s dealing with at the moment… I feel like I need 100 different lists to keep myself straight.

I sat here for an hour trying to make a “quick” Shutterfly book with pics of Mom before my free coupon code expired at midnight. That was a giant FAIL. It’s started, but nowhere near finished…

Today was an okay day. Mom was a little more “with it” – definitely more so than over the weekend, but still staring off into space. Emily came in at lunchtime just as the nurse brought in some ice cream for Mom. I didn’t think she’d take it, but sure enough she ate about half of the little cup – surprised the heck out of me! That’s the first food she’s had since Friday. Still just taking drops of water from the toothette swab. Not much intake at all…

Med adjustments continue, and she had more “awake” time today. They said she slept pretty well last night on the morphine and 1.5mg of Ativan at bedtime. Pain is still an issue through the day, and I did ask for a breakthrough dose at least once today – very small amount, though. Doc put it in perspective this afternoon when he explained that 2.5mg of sublingual morphine is the equivalent of half of a Vicodin or one third of a Percocet.

Since September, I’ve been telling myself I’d get busy on final arrangements so we weren’t doing it at the very end when emotions will be running even higher than they are now. BUT, thus far I’ve done nothing. Jess and I have talked about some ideas over the past few days. Mom never wanted a funeral or traditional setting; she always said she wanted a party. I’m sure that won’t surprise anyone who knows her.

In any case, we will have a Celebration of Life with a short memorial service. Jess and I would love for people to share “Marilyn stories” from over the years, and we truly want to celebrate her LIFE. It will come together, but we need to get serious about planning. I just know that waiting until the last minute would be a bad idea.

You would think with all this sitting around it would be easy to get things like that done, but actually the opposite is true. I really can’t do much of anything at Kobacker House unless I leave Mom’s room. If I’m in there, every time she moans, I want to be at her side. Tomorrow I think I need to make a point to spend a couple of hours in one of the family areas so that I can get a few things crossed off of my to do list.

Today, I sent the first Comfort Keeper home and called the office to tell them not to assign her to us again. She clearly had no interest in being there, and even less interest in taking care of my mom. The woman that came in at 2:30 was great; never left her bedside, talked to her, and held her hand.  Oddly, her birthday is two days after my mom’s. Same year. That makes her 76 years old! She worked 2:30p to 10p today and will be back for 7a to 7p tomorrow. Very easy to see that like Ciara, Cona is meant for this kind of work. Her caring and compassionate nature spoke volumes.

Elizabeth & Mom

Elizabeth & Mom

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Cona & Sheila with Mom

photo(14)

Pretty nails…freshly done yesterday…

 

 

 

 

 

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One of the hardest lessons of all…

10 Monday Dec 2012

Posted by Ann Napoletan in Blogging, Caregivers.com, HomeReach, Hospice, Kobacker House, Living Will, Mom, Ruminations

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This experience has taught me so much about patience, gratitude, strength, and faith, yet the lessons continue. Read Monday’s Caregivers piece to hear about one of the hardest lessons of all… Caregiving: The Ultimate Lesson.

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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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Marilyn, BA (before Alzheimer's)

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