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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Pharma

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...

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

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Today at Kobacker House …

07 Friday Dec 2012

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

≈ 3 Comments

me and mom

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.

Jess with Mom today at Kobacker...

Jess with Mom today at Kobacker…

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One of very few moments with her eyes open…

photo-79

Susie with Mom today…

 

 

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Hospice – Officially Day 1

03 Monday Dec 2012

Posted by Ann Napoletan in Blogging, Care Options, Caregivers.com, Eason House, Heartland, HomeReach, Hospice, Mom, Pharma

≈ 3 Comments

photo(10)We met our social worker and chaplain this morning. Our nurse was off today, so a sub came in her place, but she was absolutely wonderful. We will meet the “regular” nurse (Mary) sometime this week. The HomeReach team seems great; couldn’t ask for more, I guess. Compassionate, but not pushy. Making it very clear that I still call all the shots. Julie (nurse) was so gentle and sweet with my mom, which, after Nurse Ratched from Heartland, is more of a blessing than anyone can imagine.

Doc wants to try lorazepam every four hours to see how that works. The team did see Mom in an extremely agitated state this morning, which, as much as I hate, was probably a good thing. She had the first two at 4-hour intervals and slept for six hours, just got up for a few minutes, ate a bowl of ice cream, took regular meds, then started getting agitated, so I gave the third one. I am interested to see how she reacts after a day or so.

Yesterday, I gave her two at 4-hour intervals (per the hospice admission nurse) and it relaxed her, but certainly didn’t knock her out. I don’t know if today’s sleep was due exclusively to the Ativan or was also a function of her not sleeping much last night and being exhausted. I guess time will tell. God’s way of trying to teach me to take one day at a time, perhaps?

I hate the thought of her being completely out of it, but it’s also a relief to know she is peaceful and resting. Catch 21. I am praying we can get it regulated to a point where she is relaxed but not sedated. If we can’t get things under control, they suggested we could take her to Kobacker House for a temporary stay, but I want to do everything in my power to avoid that.

The pharmacy also delivered ten syringes of morphine which I now have in my possession. That will be used only if needed, mainly for shortness of breath, fluid in the lungs, and the like. I’ve done some reading up on it, and sounds like that is a common “end of life” use, which I had not previously known. Looking at those syringes made me a little nauseous… all I can do is pray that when God is ready, he will take her peacefully and we won’t need morphine at all.

Mom was snoring like a freight train earlier, and I told Jess it was the sweetest sound I’d ever heard. She needs the rest so badly. When she woke up, she had a moment where she was lucid enough that when I asked if she wanted some ice cream, she responded with a very definite, “Yes, I think I do.”

One of today’s highlights occurred when I was walking behind her holding onto her and Susie got in front and took her hands, she saw that familiar face and said “Susie” as clear as day. We all looked at each other, eyes big as saucers. My dear Susie’s face lit up like a Christmas tree. It was a pretty special moment.

We still don’t know if the neurologist can remain on Mom’s case now that hospice is on board – so many f*cking rules around billing and so forth. Irritates me that I even have to think about that at a time when my mind should be focused solely on what is important – my mom. Just one more example of how seriously broken our system is. The patient’s well being seems to be last thing anyone truly cares about. In any case, I should have an answer on this tomorrow.

In other news, Jess’s car broke down tonight. However as blessings would have it, she was able to get within walking distance of a friend’s house before it died completely. She was going to call AAA to tow her, then walk to her friend’s to get a ride over to Eason House to pick up my car. Her friend’s dad diagnosed the problem as the alternator, they went to Autozone, and he’s fixing it for her tonight. How’s that for good fortune? We’re both extremely grateful.

Tonight, Lorraine suggested moving the love seat into the bedroom, which was a fantastic idea. The noise out in the living room seems to agitate Mom even more, so being back here worked out well today. Now I have a place to sit comfortably while keeping an eye on sweet mama. She can’t safely be left alone for more than a few seconds; earlier when she’d begin to stir, she kept sitting up and almost sliding off the bed…

Reading this back, it sounds completely jumbled and disorganized, which is basically how my brain feels. This morning, I was leaving my number for the social worker to call me back and I couldn’t remember what it was… I actually had to look at my phone to get my own phone number.  I’m still antsy, not ready for sleep yet, and had not planned on staying here tonight, so I don’t have my Tylenol PM, but hopefully a few pages of the boring book I’m reading will take care of that. (((smile)))

Here’s a link to my Caregivers post for today. It’s one that I had previously written regarding intergenerational care, which I think is a fantastic concept: Intergenerational Care: The Start of a Beautiful Friendship

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Marilyn, BA (before Alzheimer's)

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