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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Hospice

Here we go again…

09 Friday Nov 2012

Posted by Ann Napoletan in Hospice, Mom, Pharma

≈ 2 Comments

The face of Alzheimer’s… a fairly good moment, actually…

Back into crisis mode. Spent 8 hours with my mom today after realizing I may as well take the afternoon off – I couldn’t focus on work. She is in a very bad place… again. I would say extremely similar to where we were back in early September.

Made lots of phone calls, more to come I’m sure. Hospice was mentioned again, but I’m not emotionally ready to go there yet after our last horrible experience. As I sat with mom last night, I had flashbacks to that awful weekend, and it made me sick to my stomach. If I have to do it (different hospice, of course!), I will, but going to wait a few days before making that decision.

Doc upped Buspar dosage, and we’re praying that will help. First increased dose was today at 3pm, so it will take a bit of time for it to kick in. The main objective is to keep her calm and settled. She is yelling, hallucinating, and picking at the air a LOT (learned a new term today – didn’t know it had a “formal” name: carphologia; doc confirmed this is a sign that “the end is near” – of course as we learned in September, “near” is a relative term).

My prayer all day today has been for her to find a peaceful place. The torment is just unbearable to watch; I can’t imagine how she must feel actually living it.

Neurologist is going to see her on Monday and assess the situation. Also sending urine out to lab; always worth checking for a UTI.

That’s it for now…. there is a Sominex calling my name. Tomorrow’s going to come too soon.

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Am I dreaming?

01 Monday Oct 2012

Posted by Ann Napoletan in Blogging, Caregivers, Hospice, Inspiration, Mom, Smiles

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It’s funny, in the past month, there have been times where I had to stop and think whether something that happened with Mom was real or I’d dreamt it.

Today, I’m happy to say that all of the pictures above are 100% real. She had a stellar day – a day the likes of which I never thought we’d see again. The weekend was pretty good, too, but today was beyond amazing. I do have to admit that I chickened out of going over after work for fear that she would have lapsed back again. I think if she had been sundowning and agitated in the least, I would have been disappointed. So, I decided to just hang onto everything that Jess and the Eason House gals had shared with me, and hope tomorrow is as good.

We had a really nice visit yesterday. She was very tired, but extremely affectionate and snuggly. I could have easily cuddled with her all day – I love those moments.

Little by little, she has been eating more solid food; the past three days, easily the most she’s had in a month. Still not eating actual meals, but today she had toast, a banana, strawberries, crackers, cheese, cookies, and pretzels, in addition to Ensure. While I was there yesterday, she ate a whole individual cup of chocolate pudding. I had to feed it to her, but when she tasted it, she made her old “mmm, that tastes so good” face. ♥

I shudder to think where we would be right now had hospice been permitted to go forward with Haldol. We may be losing her bit by bit, but there’s no reason to hurry God’s timeframe.

On another note, check out this piece written for Caregivers – it’s all about the beauty of synchronicity. (There is a slight possibility of browser problems, as this post was done pre-techie-intervention, but thus far, issues have been minimal.)

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The reality of the matter.

16 Sunday Sep 2012

Posted by Ann Napoletan in Heartland, Hospice, Mom

≈ 7 Comments

I was rather emotional when I wrote that last post, so I want to take a moment to clarify a few things, lest anyone think that I am just not ready to let go or being unreasonable. Apparently, Nurse Betty feels that way, as she left me two VM’s, basically saying that she knew better than I what is best for my mother.

First of all, there may be a time and place for drugs like Haldol; however, I don’t know a single solitary human being that can walk in off the street, spend 15 minutes with someone and make any medical judgements, let alone suggesting a drug described as “a major tranquilizer,” and one that has horrific and potentially deadly side effects.

Picture this. Mom is laying comfortably in the recliner. A stranger comes in, and without any preparation or calming words, puts a blood pressure cuff on her and inflates it. Um, guess what – despite everything, my mother STILL knows when something hurts, and THAT hurts. This stranger continues poking and prodding, trying to restrain her patient.

Well, you’re damn right Mom was screaming loud enough to wake the dead. I’d be pissed as hell, too, and I don’t have dementia to further complicate things.

There are just so many thing things wrong with this situation that I can’t even begin to list all of them, but here are the ones that immediately come to mind:

  • With me, the daughter of her patient, sitting no more than 8 feet away, for a nurse to discuss Haldol with a member of the house staff before speaking to me is inexcusable.
  • The very first thing that nurse should have done was take advantage of the most valuable resource she had available and spend 30 minutes talking to the staff to learn about the patient. Instead, she did not ask for a single bit of background from the people who have cared for this woman 24x7x365 for the past two years.
  • That a medical professional would pat a caregiver on the back and say, “I know you’re patient now, but I just want you to know there’s an end in sight” is outrageously callous.
  • For someone so clearly unable to relate to dementia patients to even be sent into this situation is a travesty. I might add that the nurse was warned that Mom doesn’t like people getting in her face or fussing over her, yet she approached her like a bull in a china shop.
  • The fact that this nurse had no idea what meds my mother was already taking before even mentioning a powerful drug like Haldol is absurd. Keep in mind this wasn’t even the nurse assigned to my mom’s case; she was a part time weekend floater.
  • If indeed the nurse truly had spoken to the doc about this (as she told Deb) before even meeting my mother, I was clearly misled when told during several conversations that Heartland Hospice doesn’t believe in medicating people right off the bat.
  • And the fact that this nurse would argue and blatantly lie to me, not once, but multiple times when I asked her to leave, and add insult to injury by following up with not one, but two phone calls questioning my judgement is unforgivable.

You can bet that I will do what I can to make sure this woman never treats another dementia patient.

I don’t want to completely give up on hospice due to this one awful experience, but it will be awhile before I’m ready to consider talking to anyone else, and they will be grilled before they are given the opportunity to come within a foot of Eason House.

Later this evening, I’ll post some photos of Mom from this afternoon as she sat at the table drinking three glasses of juice and eating 5 or 6 crackers by herself. She definitely had some agitation today, but no screaming, and we actually had her laughing on more than one occasion.

I’ll be honest, after listening to those voice mails, a little part of me did begin to second guess myself, but spending several hours there today provided me with complete reassurance that I did the right thing.

Bottom line, don’t ever let anyone make you doubt what YOU feel is best for YOUR loved one.

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