MCF/Hospice Care - Standard Comfort Pack Medications

DotBern

Hello,

Mom has been in a MCF for almost 3 yrs now. I consider her cognitive decline has her in late stages of dementia. She is up and around with a walker, speaks with lots of word salad and eats generally well. She has been on hospice, a partnered hospice connected with the facility, since 10/2024 at a time when mom's decline was dramatic. Trouble swallowing/eating, walking/ weight loss, a number of falls and became mostly incontintent.

After a couple of months, she rebounded quite well. No longer needing a wheelchair, eats without issue, weight as remainded constant, yet continues to recertify for hospice which is a surprise to me but I appreciate the added services and support.

Recently, she's had more falls, sleeps much more than usual, yet appetite is still good, but cognitively seems worse. (She also just recovered from a mild case of Type A flu and upper respiratory infection in early Jan.). She frequently will stare into space, at times does not recognize me right away. I am aware it takes time to get back to baseline after an illness or event.

A recent text message from the hospice RN, was a normal check in advising all was well with mom but that she sees a trend with restlessness and listed a 5 day period where mom was given Haldol with great results. She requested my permission to begin giving this medication on a regular basis. When I asked about the bruise on her head, she told me she was not aware of her recent fall even though she had been on call over the weekend (this is an issue as well) but more importantly, I was SHOCKED mom was getting this med as I was unaware of any restlessness, and she has been on Zyprexa twice per day regularly to help with agitation and restlessness with good results (I'm told) although I believe it promotes her word salad and increases the decline in her cognition. I've accepted the need for it according to the facility.

Now to learn she's been given another antipsychotic medication on top of the one she takes has me upset. First, that I was unaware of this or of her restlessness, and secondly, I was not aware of any other medication being given except for Ativan on occasion, when necessary. The hospice RN was quick to tell me this Haldol is part of a standard hospice comfort pak consisting of morphine, ativan, compazine, tylenol suppositories for comfort measures. My first thought is these would be fine when she becomes nearer to death. She does not appear to be remotely close to death. I advised to stop any additional antipychotic meds from now on until I we discuss further. I sent an email to the facility voicing my concerns and I requested a list of dates of falls the last 6 months and dates of when Haldol or Ativan have been given. I would like to see if the sleepiness, falls, changes in cognition are coinciding with being given these additional antipsychotic meds. I believe there may be a correlation. The facility is now coordinating a meeting between the facility, hospice and me to discuss further. As an FYI, I am an only child and at the facility at least 5 days per week. I am a strong advocate for my mom and a certified dementia teacher through the TeepaSnow Foundation and quite aware of the importance of redirecting and trying to determine what is causing the restlessness. I must say, I am starting to consider that meds are being used to keep her quiet instead of trying to understand her needs better.

Sorry for the long story, I wanted anyone reading this to have a good picture of the situation. My mom is generally pleasant, well loved by the aides and staff and when she has shown restlessness in the past, it's with getting up often through the night, setting off the alarm while wandering the unit and touching the exit door, or rearranging the table settings which can disrupt the other residents who are more cognitively aware.

Any thoughts from others who may have dealt with similar issues? Thanks so much in advance for any insight or thoughts.

April23

Oh my, you are doing the right thing IMO! My dad was given Haldol in the hospital before I knew anything and was really never the same again. Now when he is in the hospital I state nothing should be given to him and I write it on the white board in his room. When he is ready for hospice, I will make sure to specify that it not be given. It is quite standard in the medical profession, that's true, but it shouldn't be IMO.

I think you are right to be concerned and if nothing else, you have given those of us that aren't at the hospice stage yet something to be aware of when the time comes.

SDianeL

my DH facility added Depakote before he passed away but they called before they added it and explained why. (He kicked one of the caregivers.). I would see what the facility and hospice say about adding it and make it clear that they should not add or remove any meds without calling you first.

Anonymousjpl123

wow this so often happens - I come seeking advice, someone posts something similar. I would definitely ask them to give you details about the zyprexa and haldol, and why both.

Like others have said, they should have called you to let you know about the meds. Although I have to say, I often find when my mom’s MC calls me about these things it’s really not that helpful, since I am not an expert and whatever answer they give usually seems fine.

Your post is giving me pause. See what they say. And it’s great you are having a call with all of them. No matter what, hopefully you’ll get some clarity.

JulietteBee

That is most unfortunate. As a patient advocate, you are doing what is best for your mom. I would do the same.

As an RN, I can say that Haldol is a very harsh drug which is used for schizophrenia. Yes, most drugs have off-label uses, but there is no reason this med should be given for general restlessness. There are much less draconian drugs that can be used. Do insist that they NOT add or change any of her meds without discussing it with you.

Their care pack is pretty standard but if your mom does not need any/all of the meds in the pack, you have the RIGHT to refuse the meds on her behalf.

psg712

Agree with your concerns, especially about the fall risk. I just did battle this week with an ER provider who wanted to use antipsychotics to keep my mom still for a scan. It's so wearisome to fight the system that wants to medicate for every behavior without understanding the harsh effects on an elderly person with dementia. But we have to keep advocating for our parents.

DotBern

*UPDATE TO ORIGINAL POST*

Thanks to all who commented. I appreciate the advice and support. I did have a meeting with the hospice RN and the head of wellness at the facility. It appears that giving these types of medications is quite standard and they believe necessary to make mom comfortable. They put it that mom's restlessness causes her discomfort and that's the reason for the medications. Not so sure I believe that, but I understand that if they are unable to redirect my mom or she becomes insistent on doing whatever it is that is disrupting others, it's necessary to get her more relaxed. I told them I am not comfortable with Haldol from all I've read. The hospice RN will have a pharmacy consult to see if there are alternatives. Today, I was advised they recommend Risperidone 0.05mg (low dose) 2x per day and take her off the Zeprexa. The Risperidone should kick in a day or two later. I told them I am waiting to speak with mom's neurologist to determine if this is acceptable. I had the good fortune to speak with neurologist a short time ago and although we didn't find a resolution, it was necessary for him to take another call and will call me back. He did mention that Haldol should NOT be used. It's a very serious drug and takes a long time to leave the body. I was hoping he would suggest a medication we can all live with but it appears that he felt her actions are quite typical of ppl living with dementia and shouldn't need to be medicated. She isn't violent or delusional. So, I hope to finish our conversation soon. I'll keep you updated. I am convinced that the meds are used to keep them sedated and quiet (even though they would not agree). I'm between a rock and a hard place. I am considering bringing her home with outside professional help (but again, that will cause her more confusion). I know I can't handle her alone. This is just so hard. Thanks for allowing me a place to vent.