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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Hospice

The days are running together…

05 Wednesday Dec 2012

Posted by Ann Napoletan in HomeReach, Hospice, Mom, Ruminations, Safety

≈ 2 Comments

photo-77

The picture of frustration: Clenching her balled up robe…

In bullets …

  • Last night, I woke Mom up every four hours for lorazepam… even that didn’t prevent her from being up from 4am this morning until 9pm fussing, yelling, and crying… and completely exhausted. Hospice doc increased dose and I gave the first one tonight. She finally went to sleep around 9. Very restless, though.
  • I went home and slept for about 3 hours this afternoon. A three hour nap never felt so good.
  • Geri-chair came today – she doesn’t love it.
  • I realized today that I don’t remember what “normal” life and routine is like… I’ve only been doing this for 10 days and I don’t know how in the world people do it long term. I feel like I’m in a fog, and there’s definitely a higher power helping me with each move I make. This is not me.
  • I’m worried about work and what to do about next week, but trying to take it one day at a time… praying that God provides the answers I need.
  • I am going to try to stay up until midnight lorazepam, then get some sleep. We moved the love seat back to mom’s room again; I’ve put her bed all the way down to the floor, and the crash pad between the love seat and bed. For some reason, she wants to be right by the edge of the bed. I move her to the middle and she moves back to the edge…
  • Hospice nurse will be out again tomorrow.

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Short Update

04 Tuesday Dec 2012

Posted by Ann Napoletan in Eason House, Falls, HomeReach, Hospice, Mom, Safety

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photo-76It was a crazy busy day and I’m beat, so this will be a short update….

Susie kicked me out around 7:30am to go home and sleep… I didn’t argue much – went home and laid down, slept for a couple of hours before the dog started barking and the phone started ringing. The last call was from Eason House letting me know that Mom had fallen.

Jumped in the shower long enough to get wet, then called the hospice nurse and drove back over here. Mom has a good sized knot on her forehead, which I imagine will be a nice, big bruise in a day or so, but otherwise, she seemed okay. Mary, our nurse, arrived shortly after I did and checked her out.

Tonight, I ordered a chair alarm – something we hadn’t thought of previously, but apparently it helps quite a bit with a resident at Crandall House who is a serious fall risk.

Without going into a lot of detail, I am VERY pleased with HomeReach; I truly feel that we (both Jess and I *and* our Eason House family) have another level of support now, that we probably needed awhile ago. Before Mary left, she had ordered a bedside pad so that if Mom rolls out of bed, the pad will be there. We also can lower her (hospital) bed down to the floor. She also ordered a geri chair which will be delivered tomorrow. I definitely think that is going to be helpful.

We are still discussing whether or not Freidenberg will continue to consult… that’s up in the air. Our team is meeting tomorrow and that is on the agenda.

Hospice nurse will be back Thursday and then doc will visit on Friday.

After all the commotion this afternoon, I ran to Walgreen’s, then decided to stop at home to change clothes and grab food. While I was there, a delivery came – and OH MY GOODness! What a surprise! A box from Crumbs bakery – a half dozen cupcakes the size of my head! Vanilla cake with coconut frosting. Out of this world. A dear sweet friend, realizing how much I love Crumbs, had them sent. I burst into tears when I saw who they were from. Overwhelming kindness… Once again, reminding me that this experience is making me want to be a better person. Thank you, beautiful Christy.

I need to write a quick post for Caregivers, then I’m going to try to get some sleep while Mom sleeps. I’m exhausted.

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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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