I'm going to get a nurse fired--my blood pressure must be through the roof

[TerryJ2]

Arrraaaarrggh!
Thanks, had to get that out, first.

S, P's caregiver from Visiting Angels, called today and told me that she had another incident at the assisted living ctr where P lives. There is one particular nurse who is in the wrong profession--always on a power kick, will smile and then turn around and stab you in the back, you know the type.
P has been in pain for a cpl yrs because of nerve damage and stenosis in her spine and tailbone. She is on a lot of medications. Sometimes, when the weather is cloudy or a front is coming in, the pain is worse (anyone here with-arthritis or pain issues knows how high- and low-pressure systems can affect the synovial fluid in the joints and spine). So today, P wanted to ring for more medications 1 hr after her last medication. S told her that she wouldn't get anything, but that she would get a Tylenol at 2 p.m., but P rang for the nurse anyway. Fine. T, aka Nurse Ratchet, came in and told P that she could not have any pain medications and that she had already had one. Her voice and attitude were snotty and loud. S advocated for P and told the nurse that P can have Tylenol in between the other pain medications. T had a hissy fit and said, "We don't administer medicine 24 hrs a day!"
Oh, yeah?
P was so upset, that after T left the room, she threw up.
S is writing up a report to send to her supervisor at Visiting Angels. I have a call in to the administrator. (I'm not even mtng with-the head nurse this time.)
No excuse. This isn't a hotel (and if it were, we'd get better svc.)

I have this burning desire to drive over there and get in T's face, but know it would be a mistake. Besides, difficult child will be home from school any minute and I have to be here to make sure that my own ship doesn't sink.

Thanks for listening.

P.S. I *still* haven't finished the paperwork about the missing medications, either.

 

[Steely]

HUGS............
You have to be a warrior mom for the elderly too. If not, no one else is going to do it. So sorry though - you don't need another burden.

 

[TerryJ2]

Thanks.
I just called the head nurse, and explained about P's memory issues and pain medications, and asked if they have mtngs every time there is a shift change so that all the nurses are aware of all the pt's conditions. She said yes, and immediately jumped in by telling me that they document everything blah blah blah. I told her that wasn't my point. My point is that P has dementia and repeats herself and doesn't deserve to be yelled at. This. Is. Her. Home.
The nurse was very quiet and then apologized.
I told her I was writing up a report/complaint and it wasn't about her but about a staff member (although judging from her attitude at first, I may as well incl her, I mean, The Party Line is getting sooooo old) and she again apologized and I said I would be speaking to her again in the near future.
I kept my voice level and firm.

 

[buddy]

Very nice job...wow. Poor P. no one deserves to spend their final days with people treating them in an undignified way. I am so glad you are there for her. Go get 'em.

 

[DammitJanet]

Is P on the pain patch? While that can have difficulties for some people because of the skin irritation, they have now made strides with that and you can put benedryl cream on the skin before you apply the patch if she does have irritation to help that part. I would think that might help with the not getting her pain medications on time issue and the missing medications issue. It is hard to come up with an explanation for missing an entire patch considering there are not that many in a box and the box is sealed when you get it. For the break-thru pain, maybe instead of the percocet she is getting, maybe they should consider the morphine 15 immediate release they had me on before I insisted to go off them and down to something less strong. Now I have the percocets. Giving her tylenol is just adding to her problems because they can OD her on the tylenol because its in the percocet. The amount of tylenol that is now listed as the OD level has been lowered.

 

[hearts and roses]

I think emphasizing that this is her home was very important. To the staff, it's a waiting room, their job. They get to go home to their families and have home cooked meals, etc.

I always repeat those words at my moms care meetings quarterly- This is my moms home! - so they remember that she's just not another crotchety old lady being a pita.

You need lots of hugs, what a good niece you are! Thank god P has you!

 

[DDD]

You're doing an outstanding job advocating for her. I can only imagine how stressful it is...maintaining your calm and not letting the stress come through your words or voice. Way To Go. DDD

 

[Marguerite]

I know just how anxious a person can get when pain medications are not available when you feel you need them. I much prefer being able to self-medicate even in hospital. I've been on strong opiate pain medications for ages (decades). The dose does increase over time even if the pain does not, because your body gets accustomed to the medications and it takes more to have the same effect. I have fought every increase but my pain specialist has been supportive and realises my dose increase is not related to addiction.

WHat has worked for me, has been to never try to eliminate the pain entirely. If you do, your body habituates faster. But in dementia, it is hard to remember that a certain amount of pain has to be tolerated. On top of tat, the anxiety over whether you will be permitted your medications when you desperately need them, will make things worse.

She threw up when told she could not have more medications? That is anxiety ramping up and I wonder if it is not also related to past experience. It is easy to tell someone with dementia that they've already had their medications, when they have not. And if your body is used to that dosage and you don't get it, the pain ramps up incredibly. If for any reason my medications are not on board (if I have a gastric bug for example, or migraine with vomiting) I've needed to go to hospital for an injection.

I realise that what I describe can sound like addiction, but it is also what you get when there is severe pain. My pain medication dose has been high and over the years doctors have tried to get me off them. I've tried to get off them. But first deal with the pain.
However, for reasons I cannot explain, a year ago I noticed my pain levels had reduced a little so I reduced my dose. Since then I have brought my opiate dose such a long way back that I think soon I could even be off these medications entirely. I no longer have withdrawal problems if I am late taking these medications, I just get pain. But the pain is far more tolerable and controllable. i wish I knew why so I could bottle it.

My point is - on opiate medications, too many health professionals see it as bad when in fact it can often be the best option. They also carry on about addiction even where the patient is taking the medications exactly according to prescription.

These medications can very easily be abused. That should be far less likely in hospital. It would also be easier, I suspect, for someone with dementia to develop an addiction problem simply because they forget why they have pain and want the pain totally gone. That ramps up the opiate dosage perhaps faster than is healthy, and of course more and more is needed when you do that.

However, patients with dementia are also very vulnerable to unscrupulous hospital staff who themselves are abusing patient medication.

A trick I have used which S could try if she is a frequent enough visitor - I used to be in such pain that I would take two strong pain pills (paracetamol plus codeine) with a cup of hot coffee. The idea was, the hot coffee would speed up my body's uptake of the medications and give me a faster relief from pain. What also happened, however, was a conditioned response. The taste of coffee was associated with pain relief and I could actually use this to reduce my medication levels. I could drink a cup of coffee with half the medication dose and still get pain relief. The trick is, to have something you associate every time with medication. The same thing. it doesn't have to be a cup of coffee but something with a strong smell or taste is recommended because that plugs in to the brain at the most basic level.

I think you handled this well. I wouldn't have too many staff members in your sights or you will just seem to be adversarial. Instead, deal with the issues rather than the people. If there is drug abuse going on with the staff, dealing with the issues will still bring the deeper problems to light.

Another point to make to the staff - this is a chronic situation, not an acute one. When a patient has surgery, they are often on strong medications. Over the next few days they are eased off the stronger medications and onto something more innocuous for longer-term. You get staff telling you to wait a little longer, or take these two pills instead of the injection. I remember feeling very resentful when I was told this after kidney surgery when I was 20, but with hindsight they were doing the right thing. But conversely, when I needed my regular pain medications after difficult child 3 was born, and the nursing staff tried the "wean her off" routine despite doctors having ordered my medications to be ongoing, I knew they were doing it wrong. It was just that most of their patients, if not all, were acute. I was chronic. And the nursing staff were responding out of habit.

Marg

 

[TerryJ2]

Thank you.
FYI, yes, P has a Fentanyl patch and that's part of the complaint I am finishing up from recent mo's.
She is also on Percocet and a cpl of other things.
Yesterday, we had a thorough neurological workup, and the dr increased her Cymbalta dosage (it works for psychiatric and pain issues, as most of you are aware), and increased either the trazadone or gabepentin. She said that one of both of those (probably the Cymbalta) was supposed to have been started at the lowest dose, then increase incrementally. No one touched it for a yr. Grrr.
So I hope by tomorrow, or at maybe Monday, we'll see some results.
But I wanted to get to the bottom of the tailbone issue (excuse the expression ), which is why I made the neurology appointment.
She will be having a brain MRI in a few wks.

Also, the point is not the medications right now; it is that this is her HOME and she should not be yelled at. You'd think these nurses would be trained to deal with-dementia pts. This is not a Caribbean resort for scuba diving.
The nurse I am writing the complaint about, T, is uncoachable. Not worth re-training. She needs to be fired and has personality issues.

 

[HaoZi]

Kudos to you for approaching it politely. I'd have been tempted to take difficult child down there and let him express your displeasure.

 

[TerryJ2]

Hahahaha! That's the secret--how to get difficult child to ramp up on cue.

Yes, Marg, P is taking her medications according to the scrips that are written. She has always suffered from anxiety and not having medications is one of her triggers. This nurse, in particular, doesn't care. She has other work to do and P is in her way.

I love the coffee story.

 

[Marguerite]

I can relate to the painful tailbone. I've found physiotherapy has helped me a little. I'm also using a ring cushion and have ordered a wedge with sacral cut-out. If I don't use the cushion the problem gets a lot worse. Sitting in bed makes it a lot worse also.

I'm thinking that if something can be done (say, a special cushion) to help alleviate the pain in other ways, it could do several things:

1) prove that this is not simply a medication-seeking issue; and

2) demonstrate an active approach to alternative non-medication options to pain management, as an adjunct to medications.

And that should then strengthen your argument that she should not be yelled at in her own home.

Marg

 

[buddy]

Marg, that was a great post about the medications.

My point is - on opiate medications, too many health professionals see it as bad when in fact it can often be the best option. They also carry on about addiction even where the patient is taking the medications exactly according to prescription.

I would wonder, if P is older, (and forgive the ignorance, i really dont know so am asking) Does it matter if she gets addicted as long as she gets the medications at this point? Maybe I am confusing dependency with addiction??? I am not saying we shouldn't care if she has an addiction and she suffers from that, I mean should they worry that she might get addicted at this point in her life? (oh, I am assuming she is older, maybe not though)

I took oxycontin back before it was in the news because after a car accident I had a back injury. (I might be scared to now given people stealing it etc.) When I was ready to stop I just asked how to go off it. It took two months. I continued with pain so couldn't go without something and can't take anti inflammatory medications. (ultram now, works great for me)...anyway I do remember that if I was late for the doses of oxycontin it was very uncomfortable. I never got to a high dose but I guess I was on long enough my body didn't like being off it cold turkey. I can't imagine if I couldn't run myself and grab the medication. And I wasn't on much... poor woman.

 

[TerryJ2]

I would venture to say that P was addicted when I first moved her down here. She had delusions and hallucinations and was screaming in pain, despite the fact that she was still getting pain medications. (Just not 40 mg XR oxycodone every 4 hrs.)
Now she is dependent.

 

[Marguerite]

The thing about dependency (from personal experience) - if you are genuinely in pain, that pain needs to be treated. if you only take what you need to in order to deal with the pain, you will not get addicted. But you will get habituated to it (which is when the dose increases over time to get the same benefit). But the aim is - deal with the pain!

My immunology specialist (former - now retired) used to say, "When the pain goes away, then we'll discuss getting you off the medications."

My neurologist says, "morphine is a lot better for you than prednisone." The pain specialist agrees with him.

And for whatever reason - my pain levels have reduced. So I grabbed the chance to reduce my opiate levels. My pain specialist is amazed and delighted - he's never had anyone on the high dose I was on, succeed in reducing so much, so quickly. Or ever. As I said to him, "It's a measure of the reduction in pain."

Pain is not gone, just improved enough to cut dosage back a long way.

Over the years, I've had doctors describe me as addicted (including my former immunologist). I challenged that then and still do. Habituated - yes. Dependent - certainly, because I am in pain and I depend on the opiates to ease the pain enough for me to function. But that's the point - on the medications, I FUNCTION. Without the pain medications, I cannot move. Although at the moment, if I have to skip a dose for a day I can still function, a little. Unlike a year ago when no pain medications meant hospital.

It is very easy to get addicted to this stuff. But if you can be disciplined and have good support (as I have had), you can take these medications long-term (for me it's been 15 years) and at fairly high doses, and still stop the medications as pain eases. I have just demonstrated this.

And if the patient is terminal, has dementia or for whatever other reason has a limited outlook, then deal with the pain first and worry about addiction next year, if the patient is still around.

Marg

 

[InsaneCdn]

And if the patient is terminal, has dementia or for whatever other reason has a limited outlook, then deal with the pain first and worry about addiction next year, if the patient is still around.

There's a saying in long-term-care... that really, every patient there is "terminal", because none of them will be going "home" again. The needs for long-term-care patients is very different from acute care or from chronic care (like you, Marg). With long-term-care... your statement, quoted above, is the best approach. Do what it takes to make them comfortable, if possible give them some quality of life... the rest doesn't matter.

 

[TerryJ2]

I agree.
However, the more pain medications, the fuzzier she is, which increases her risk of falls, and cuts way back on her ability to enjoy conversation or read. It's a delicate balance.

 

[DammitJanet]

Insane...that is so true. I dont think anyone would have even given a flippen thought about addiction, dependency or whatever with my father and his lung cancer. He was terminal. The whole idea of giving him morphine based cough syrup and later morphine by mouth in a syringe orally was to ease his pain pretty much completely. He was in hospice at that point. There was no turning back.