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

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…

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 literally right outside the window at Kobacker House today…

Lydan hard at work at KH.

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

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

That sweet little face makes me smile…

Christmas came after all…

09 Sunday Dec 2012

Posted by Ann Napoletan in Care Options, Eason House, Holidays, HomeReach, Hospice, Kobacker House, Mom, Pharma, Ruminations, Support system, Uncategorized, Weight Loss

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I arrived at home tonight to find that my two very best friends had been here this afternoon with their elf uniforms on. They completely decorated my house for Christmas, tree and all. Even brought in firewood and left an assortment of hot cocoa and marshmallows. I burst into tears when I saw it and have been sitting here enjoying the tree for the past hour.

2012 xmas collage

I wasn’t going to do any decorating this year; just didn’t seem like there was any point. But, wow, to walk in that door and see this… I actually feel like I have a bit of holiday spirit now. What an amazing and thoughtful thing for Debby & Sheila to do. Beyond blessed to have friends like this…

We had visitors in and out all day at Kobacker House, which was nice. Jess and I continue to be overwhelmed by the outpouring of support from all of our friends, old and new. I know I probably sound like a broken record, but I can’t express my appreciation enough. Thank you for lifting us up in prayer and through your many acts of incredible kindness and generosity. Today, I even received a FB message from a wonderfully talented local musician Jess and I met a couple of years ago, offering to come in to KH and sing for Mom…

Emily and Mom…

As we sat watching Mom sleep across the room this afternoon, I told Jess that I just can’t even believe any of this is real. Seeing her like this is so hard, and sometimes I feel like I’m walking around in a haze, this is really just a nightmare, and I will eventually wake up. How in the hell did we get to this point? It seems like she’s had this disease forever, but the decline in the past three months has been stunning.

…Mama… ♥

She was awake very little today, and even when she was, she wasn’t. Her eyes would open for awhile, but she wasn’t really there. Just staring off into space. No reaction to our voices… nothing. She did seem to be comforted when I stroked her head, but that was about it. Hasn’t had anything to eat or drink. A few drops of water from a toothette swab and a syringe-ful of Ensure as a med chaser.

She had a rough overnight and they did give her morphine about 2am. As mentioned, she wasn’t awake much today, but did have some stretches of agitation this afternoon. In two instances, I was ready to give morphine, but the nurse suggested giving her “regular” meds first to see if they would calm her. Sure enough, the buspar and lorazepam worked both times. KH definitely does not push heavy duty drugs as I thought they would; in fact, if anything the opposite is true. Of course, they do leave the final decision up to the family and had we chosen morphine, they would have administered it.

We had a wonderful Comfort Keeper again today. The fact that HomeReach pays for that service is a true godsend. Just the ability to go home at night and sleep knowing for certain that Mom will never be left alone is so reassuring. Ciara was there from 7a to 7p today and kept notes during her entire shift, then typed them up for me before leaving. Every detail of those 12 hours was documented, from people coming in and out of the room, to changes, to repositioning, meds, applying lip balm, et cetera. I was very impressed. She will be there with us again tomorrow, but the 7p to 11p girl seemed very nice as well.

Ciara, from Comfort Keepers, sitting with Mom…

I really can’t say enough about Kobacker House. Not only is it a beautiful facility ($32 million, all paid for through donations), but the staff has been wonderful. All of the nurses and PCT’s have been friendly and compassionate and have been gentle and kind with Mom. Today, we met the canine companion, Lydan, a yellow lab – one of the sweetest dogs I’ve ever seen. I may have said this yesterday, but it bears repeating. Columbus is very fortunate to have KH.

Kobacker House Christmas…

KH – Beautiful multi-denominational chapel…

KH – one of the garden/courtyard areas…

I feel like we’re where we need to be right now; just knowing we can have a nurse bedside at the push of the button provides peace of mind during what is a terribly uncertain time… We definitely made the right decision, as difficult as it was. And our Eason House family is still with us every step of the way. Susie was there twice today, along with Renee and Lorraine. It never ceases to amaze me just how much they love my mom…

The worst part of the day is waking up in the morning; the moment my brain engages enough to remember what’s going on. Sometimes I think it would be easier to stay awake 24×7 than to wake up to that realization over and over again. As I said, I just can’t believe this is happening… I can’t believe it’s my mom laying in that bed looking so drawn and frail…

Beautiful flowers from friends Rodney, Sherrie, Erin, Ryan, and Michael…

Today at Kobacker House …

07 Friday Dec 2012

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

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This was taken in the wee hours at Eason House the night before going to Kobacker…

Honestly, not much to say.

Mom has more or less been sleeping for 40 hours straight. She woke up a few times while we were there today, but not for more than 10 or 15 minutes at a time, and that was with just 1.0 mg of Ativan at 6am and another 0.5 mg at 4pm. Consensus seems to be it is just sheer exhaustion, which makes sense considering she hasn’t been sleeping much at all for the past several months.

There was some agitation while she was awake, but it was minimal and she was easily comforted with one of us rubbing her head and talking to her. We sent the sitter home this afternoon since I planned to be there until at least 7pm, and I was extremely comfortable with the overnight sitter. She’s also a PCT at Riverside so she has a little more experience than just “sitting.”

Susie stayed with me all day; I don’t think I could have kicked her out if I’d tried (not that I wanted to)! What a friend she is. Still lovingly caring for Marilyn, even on her day off. And, she’s coming back tomorrow as well. ♡

Doc was in and very realistic about the situation. The goal is what it is, but there is a possibility that the most recent decline is just entry into the next stage. Let’s just say he didn’t give me any false hope. The only med change he’s made thus far is cutting the Ativan down to see how she does. As he said, they’re really just doing what Freidenberg did; basically trial and error – and Freidenberg tried everything imaginable.

I’m not going to sugar coat things; I’m worried. She’s been asleep for such a long time, hasn’t had anything except a small cup of ice cream today and no fluids; terribly dehydrated and weak… I want to remain positive, but I’m just not sure she can bounce back. It’s very odd to be in a position where you’re in a hospital setting but really can’t do much of anything that will make a difference.

Per her living will, there is to be no artificial nutrition or hydration, and it’s an extremely difficult thing to watch. But before she was ill, she was always very adamant about what she wanted – and didn’t want, and we have to respect her wishes. …That certainly doesn’t make it any easier, though.