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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Eason House

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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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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Decision: Temporary Stay at Kobacker House

07 Friday Dec 2012

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

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Today …. where do I even start?

Rewind to last night, I guess. Horrible. Literally up all night and things got progressively worse until I called hospice at 4am.  Long story short, after talking through everything, nurse had me give 2.5 mg of morphine and said she would be at the house asap. It took almost an hour for the morphine (+ lorazepam!) to even touch Mom’s agitation. I always knew my mom was a fighter, but she has given the word new meaning.

No sleep, no food, no liquids, and screaming for hours and hours – and hours. Beyond completely exhausted, full of lorazepam… and she was still fighting to try and sit up and even stand (neither of which she was capable of doing). Even her caregivers who have done this for years have said they’ve never seen anything like it. She’ll let us know when she’s ready to give up the fight, but apparently she’s not ready yet.

Once the nurse arrived at the house, we realized that the problem was Mom’s bowels. She was completely backed up and having severe pain, but of course, she couldn’t tell us what was wrong. In hindsight, I feel like I should have seen the signs and realized what it was, but we all missed it. What a nightmare it must be to have horrible pain and be unable to tell anyone what hurts.

Long story short, nurse gave her a suppository and had me give 5.0 mg morphine for the next two hours. She had two BMs and was *finally* able to rest.  Between the morphine, Ativan, and outright exhaustion, she’s still asleep (11pm).

Her regular nurse came out this afternoon, took vitals, checked circulation, etc., and everything looked good. BP perfect, clear lungs, strong heart rate, no circulation problems. She said she honestly does not feel we are at the very end yet and that with the right meds, there’s a good chance we can find a middle ground between screaming and sedation. She mentioned Kobacker House… on a temporary basis. Let’s face it, without 24 hour nursing care, it would be very difficult, if not impossible, to get the meds tweaked to control her symptoms without knocking her out.

Tough decision, but honestly after seeing the agony she’s been in for the past few days and particularly last night, I felt we had to do something. Allowing the suffering to continue wasn’t an option, and sedating her just didn’t feel right if there was another avenue to explore. I am sure if she knew what was going on, the only thing worse than the state she’s in now would be turning into vegetable laying there waiting to die.

The day was beyond emotional. Her caregivers really struggled with the idea of her leaving and the fear that she wouldn’t return. I called the social worker and she came out to talk to all of us. I don’t think there was a dry eye in the house, but when it was all said and done, I believe everyone felt that this was our best option right now. As I said, neither of the alternatives looked very attractive.

It was after 8pm before the EMTs arrived to transport her, but by 9:30pm, she’d had a bath, was in a fresh nightgown, and sound asleep. They had arranged for a “sitter” to be with her in the room at all times so she is never left alone. Jess and I were given a tour of the house, sat with Mom awhile, and talked to the nurse about what to expect.

Not much will happen tonight. The goal is to let her rest until she’s ready to wake up. At that point, they’ll “follow her lead” as far as next steps, working to find the right combination/dose of meds to calm her without sedating her.

I hope I’m not kidding myself, but I feel confident in this decision, and believe there is a good possibility that they will be able to help us. I am told it is not unusual for people to come in for short stays for this very reason. Jess and I left there feeling as comfortable as possible under the circumstances. I truly feel she is in good hands until I get there in the morning. Tonight, I’ll be able to get a good night’s rest so I can stay on top of everything that is happening tomorrow.

I’ve said it several times and I truly believe that I’m being guided by a Higher Power. If left to my own devices, I would have crumbled days ago. I’ve done some crazy things in the past several days that were clearly a function of my being worn out, yet I somehow I’ve been able to maintain the focus needed to take care of Mom. That’s not me at all… I am definitely being guided each and every step of the way.

After working four straight 12’s, my dear Susie asked if she can come with me tomorrow – on her day off – to sit with my mom. Yes, it’s clear that these folks are not just Mom’s caregivers, they truly love her and they’ve become our family. It felt really strange to turn off Mom’s light and walk out the door tonight, but I have faith that we’ll be back there soon…

All because two people fell in love...

All because two people fell in love…

Now I’m going to bed. If I’ve calculated correctly, I’ve now been up for 32 hours straight. It’s amazing what our bodies are capable of when it’s necessary. When my head hits the pillow, I’ll be out and boy is that going to feel good.

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