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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Kobacker House

Tired…

12 Wednesday Dec 2012

Posted by Ann Napoletan in End of Life Planning, End of Life Signs, HomeReach, Hospice, Inspiration, Kobacker House, Pharma, Ruminations, Support system

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Too tired for a long post. Suffice to say it’s been an emotional day. At least two people passed today. One was two doors down, and a few minutes ago, they wheeled another by our room. I just don’t even know what to say. I don’t know how these nurses and docs do this day in and day out. They have to be wrung out at the end of a 12-hour shift. Very, very special people.

They cancelled Mom’s sitters, so we are spending the night at Kobacker. I plan to discuss that with someone tomorrow… I am a little perturbed that I was not notified and didn’t realize this until I came in this morning to find Mom alone. I’m giving benefit of doubt right now and assuming some type of miscommunication or misunderstanding.

Today, they put three ports so that meds can now be given subcutaneously. We had an awful incident this afternoon and I won’t go into details, but it’s something I never ever want to witness again. She is at a point where she can no longer swallow, but we found out the hard way when she received a tiny amount of meds via oral syringe and couldn’t handle it. Awful.

We had both the chaplain and social worker in today. Definitely needed the extra support and glad it was available. Tears we plentiful. More and more signs that the end is nearing. The apnea is like nothing I’ve ever seen – up to 20 seconds without a breath. Very difficult to watch, but she is relaxed and comfortable with no signs of distress.

Jess brought some photo albums and so forth back with her tonight so that we can start pulling pics together for a slide show. We also have Mom’s retirement memory book here now and it is jam packed with notes and stories that can only make us smile. She touched so many lives; it’s incredible, really.

Continue to be amazed by the support from friends. Emily came in late tonight after a long day at work plus another commitment, and sat with Mom for a couple of hours. She lives all the way up in Delaware but that didn’t stop her from staying MUCH later than she should have. She’s such a comfort to all of us; what an angel.

Sheila also came after work and sat with me for a few hours while Jess ran some errands for me, grabbed a few things at home for us, and let Tucker out. Again, such a comfort and although she didn’t know my mom pre-ALZ, she is absolutely amazing with her. So gentle and kind, so soothing. She even helped me do Mom’s nails the other day. #Truefriend

Everyone… and I mean everyone has been so wonderful. We have an amazing family of friends. I hope I can return the kindness, I really do. My life has changed – I have changed. I can’t put my finger on it, but life as I knew it will never be the same after this experience.

Tonight, I am sending prayers across the miles to two friends from my high school class. Both have parents with this damn disease, and all three of them went into hospice within a few days of each other. Donalee’s dear mother earned her angel wings last night, and Maria has been sitting with her dad all day, living what sounds like a parallel experience to our own. Sending love and prayers ladies; with you in spirit.

My heart and soul...

My heart and soul…

photo(17)

One of three ports…

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Completely Overwhelmed…

11 Tuesday Dec 2012

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

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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

photo(15)

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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