The reality of the matter.

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.

What.a.day.

Well, today was quite a day. I had a 1pm appointment with Heartland Hospice to do the admission paperwork and assessment. Ah such high expectations. And, within two hours, before everything was said and done, I fired them.

I still cannot believe what just happened.

Things started out just fine. The chaplain arrived to do the admission paperwork promptly at 1 o’clock, and she seemed like a very nice, down to earth person. We had a good conversation, and I was feeling reassured that I had made the right choice.

And then the nurse arrived.

Initially, she, too, seemed nice enough, but as soon as she came near Mom, the screaming started. I have not heard her scream at that level since last week. Okay, new person, a lot of commotion, not surprising, right?

Well, I finished up with the chaplain and saw her out, then sat down with a woman who is moving her mom into the new house next week. She was still apprehensive about the move, having had her mother in five different places, and asked if we could talk.

Meanwhile, Betty-the-nurse, was still futzing with Mom – and the screaming went on, getting louder and louder.

As I continued my conversation in the front room, Deb came over, apologized for interrupting, and said she needed to talk to me. She proceeded to tell me that the nurse told her they would be putting Mom on Haldol next week; she had already spoken to the doctor about it. She said there was no reason for the girls to have to “deal with this.” Deb immediately asked if they had spoken to me about it – not yet, but they would do that next week. She finished by patting Deb on the back and saying, “I just want you to know there’s light at the end of the tunnel, honey.” I actually heard that last sentence, but had no idea what the conversation was about.

I finished with the lady from the other house, then walked outside and called Tim. Let’s just say, Betty-the-nurse wasn’t there much longer, despite her going a couple of rounds with me, and blatantly lying to me at least three or four times about what had just happened.

After so recently changing my opinion about hospice (for the better), this experience was not what I had bargained for, but as someone said, it’s best that we found this out on the first day before Mom started to develop any type of relationship with these people. I am still so angry that I could spit nails. I asked the question multiple times and was told that the last thing they would do is load her up with drugs… and right off the bat, they’re talking about Haldol.

If I didn’t know it before, I certainly was reassured today that our Eason House family truly is my second set of eyes and ears. Emotions were running high among all of us, and I saw firsthand how much love they have for my mom.

There is a time and place for these types of drugs, but she is not there yet. We had a lovely day yesterday, with more smiles than I’ve seen in two weeks. And when I arrived today, she was up, sitting at the table picking at her lunch. Once hospice was out of there, she immediately calmed down, and she drank a full bottle of Ensure for me in less than fifteen minutes.

Right now, I have no desire to talk about hospice – and won’t anytime soon. I can’t express how radically disappointed I am by this experience. Tim agreed wholeheartedly, so for right now, things will remain just as they have been.

And, we’ll take one day at a time…

Within about fifteen minutes of the hospice nurse leaving; resting peacefully.

A word about patient advocacy…

The few times that either of my parents have been in the hospital, it struck me that there were so many people there alone – with no one to advocate for them. Experience quickly taught me just how critical it is to have someone to bridge that gap and to look out for the patient’s best interests, especially in the case of seniors.

Yesterday, I was once again reminded of how important it is to stay on top of things. I got a call from Eason House in the morning stating that the neurologist had faxed orders to dc Mom’s Aricept.

I.was.livid. A week ago, I told the doc that I didn’t want any further med changes without my prior consent. At the time, he had made two rather significant changes, and I wanted to let things alone and allow some time to see how she would do. I have the utmost respect for her neurologist; he’s one of the best in the city as far as ALZ and dementia go, BUT… there have been too many med changes made in succession without a chance to see what is working and what isn’t.

So, a week later, without my consent, he faxes orders to dc the Aricept. WTF?!?

After a call to office, a call to the pharmacy, and a call from the pharmacy to the doc, the orders were cancelled. But what if the folks from Eason House weren’t my second set of eyes and ears? What if they had not let me know what was going on?

I really cannot stress enough how important it is to stay actively involved in long term care. Insert yourself into whatever the situation may be to ensure that you understand (and agree with) the treatment protocol. Science is a wonderful thing, and thank God for medical professionals, but you must not be intimidated by titles. The fact is, sometimes YOU know better than anyone else what is best for your loved one, and there are times when you have to stand your ground, even if it means overruling the experts.