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…

Down in the Valley…

17 Saturday Nov 2012

Posted by Ann Napoletan in Falls, Mom, Pharma, Ruminations, Weight Loss

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I feel like I hit a low point today. Got to the house about 9:30a when the doc arrived, and Mom was sitting quietly in the recliner. She looked angry at the world, but she was calm. She did really well as the nurse took her vitals, and doc gave her the once over. I count that as a win. Things started out on a fairly positive note.

Talked to doc about care plan, and we were on the same page.

Let the antibiotic do its thing; get rid of the UTI.
Monitor blood pressures following 50% cut in diltiazem.
If issues continue, stop diltiazem and possibly inderal.
Switch back to lorazepam for prn.
Pray like crazy.

Okay, number 5 was my personal addition, but it’s a must.

After doc left, Mom looked very drowsy, and I thought she was going to go to sleep, but instead, she slowly ramped up until I decided it was time for a lorazepam, which…. didn’t do a whole lot other than make her very unsteady on her feet – a very bad thing since all she wanted to do was walk. Would.not.sit.still. Couch, recliner, love seat, chair, back to recliner… sitting just wasn’t in the cards.

It struck me today how very thin she looks; she has definitely lost more weight. Today’s intake was just two Ensures, some ice cream, a glass of juice and a glass of water. Maybe it’s time to look into hospice again as much as the thought of it makes my hair stand on end… I don’t know. I think that’s the thing right now. I am feeling at the height of helplessness and frustration and quite simply don’t know what to do next.

But I digress… So, did I mention how unsteady on her feet she was after the lorazepam? On one of our many walks from the front room to the living room, I felt her begin to wobble, but it was too late. I had my right arm around her back and did a decent job of breaking her fall; luckily she ended up on her butt with her back against the recliner. Annoyed, but thankfully not hurt. I did a number on my bad wrist and landed hard on my right knee. A few hours later, and after icing it, the swelling has gone down quite a bit. I’m sure I’ll live.

Even after that fall, I could not keep her in a chair. One thing is for sure, stubbornness is a trait I come by honestly. No two ways about it, the day got the best of me. Not long after the doctor left, my head was throbbing and it got progressively worse throughout the afternoon, as I felt like my insides were doing somersaults. For whatever reason, I was a big bag of nerves today.

Mom didn’t scream all that much, but she cried almost all day long – no tears, but head in hands sobbing, as if terribly distraught about something. Also lots of picking at her clothes, grabbing and fussing with the blanket, reaching out into the air, and futzing with imaginary things in her hands. Extremely unsettled.

Just about the time I thought I was headed off the deep end, she would snap out of it and smile for a split second or say ‘I love you,’ which tore me apart – again for some reason things were getting to me more than usual. When she reached up and started stroking my face, I lost it – for a few minutes, my emotions got the best of me.

Finally, about an hour after 3pm meds, she fell asleep…

I cancelled my plans for tonight, came home, took some Excedrin migraine, turned off all the lights and lit candles, got a fire going, propped and iced my knee and drifted in and out of a light sleep for awhile. When you open your eyes on a Saturday morning and realize immediately that you feel like burying your head under the covers for the next six months, you know it’s probably not going to be a great day.

I hope a good night’s rest will allow me to wake up tomorrow morning feeling much stronger and more resilient than I felt today…

To eat… or not to eat…

24 Sunday Jun 2012

Posted by Ann Napoletan in Mom, Pharma, Ruminations, Weight Loss

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Really noticed today how thin Mom’s arms are looking. She has definitely lost more weight. Apparently eating wasn’t high on her list of priorities this past week. Meds, perhaps? Definitely a possibility, but who knows for sure. Doc took her completely off the Depakote, which is surprising since she had been on 250mg for a long time before he upped it to 500mg a couple of weeks ago. I definitely think that was what was sedating her, but I didn’t expect him to d/c it altogether. Will see him on Wednesday and ask about that. Also increased Inderal to 10mg, 3x day.

So, at least this week, she was more “with it.” Tired, but certainly not sedated. Definitely back on the emotional/behavioral roller coaster, but I’d prefer that to sedation any day. She’s back to covering the full range on a daily (sometimes hourly) basis – from laughing to crying to screaming to dancing and anything else she can come up with. It sounds like the highlight of her day today was going for a little ride in Susie’s convertible, with the top down, of course. Just thinking about that makes me happy!

She’s at a point where she won’t eat when the other ladies are at the table. Too much commotion, and too many people in her business. I really didn’t think she was going to eat at all today, but Susie finally followed her around with a bowl of jello and Cool Whip until she got her to take a few bites. Sure enough, Mom walked over to the table on her own and sat down.

I sat down and fed her, and surprisingly she ate her entire plate of lasagna and most of her garlic bread, plus she finished the jello and a glass of ice water. She doesn’t eat by herself much at all anymore; having someone feed her has become pretty much the norm. When she does try to eat herself, it’s always with her fingers – even if it’s lasagna. Today when she stuck her hands in there, I let her go. WTF, at least she was eating…

As is so often the case, I left Eason House today wondering how in the hell we arrived at this point. I look at her, and quite truthfully, my mind just can’t grasp any of it. But today, she smiled at me, laughed a little, and she was full of kisses, so I’ll hang onto the good and leave the bad behind.

Until next time… Carpe diem…