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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: HomeReach

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…

photo-80

One of very few moments with her eyes open…

photo-79

Susie with Mom today…

 

 

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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

≈ 2 Comments

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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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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