Concerned about medications for my 99-yr-old mother with Alzheimer's/dementia. Hospice prescribing haldol + seroquel. Anyone have experience?

Good Morning,

I had to write when I read your question. Years ago, my dad passed when I was in grad school. I had to take over since dad was an only child and my grandmother was in a lovely NH.

I do re-call, now this is going back 25+years that my grandmother told me they gave her haldol and my grandmother said never again.

Fast forward my mother who is 84 said don't ever let any place give me haldol.

I don't have a medical background but I wanted just to give this information.

Is Abilify, Melatonin, Citalopram an option? These things are so difficult and Teepa Snow's Caregiving book explains each stage of Alzheimer's. I found it helpful as to what to expect as this beast of a disease progresses.

You are in my prayers!

You can always discharge Mom from hospice.

I discharged Mom from hospice 4-1/2 years ago. She had a side effect from Bactrim administered for a UTI and due to the side effect she was given morphine. Prior to the
UTI she was walking 1/4 mile four times a day for a total of a mile a day with her little dog and caregiver. Once they started giving her morphine she turned into a blob that could no longer talk or eat.

I stopped the morphine. Hospice caused her really serious pain from the constipation. She cried for a week from the constipation caused by morphine and kept saying "It hurts."

I threw hospice out.

Mom is still with us 4-1/2 years later.

Mary,

That is wonderful news to hear. So glad that your mom is ‘herself’ again.

Don't drug your mother if you feel these drugs are harming her.

Fire hospice if you feel they do not have your mother's best interests at heart.

Your mother is terminally ill, thought to have 6 months or less to live, which is why meds are prescribed to keep her comfortable. Some of these meds might not ordinarily be prescribed or dosed as they are if NOT for the fact that your mom is at the end of her life.

She is obviously having an allergic reaction to one or more of these meds. The prescribing doctor needs to meet or consult with you for approval before writing more prescriptions. You should have the final say, as I did when my mother was on hospice. If I said no, the drug was not given. I wanted her kept comfortable though, so I wasn't adverse to her taking Ativan and morphine as needed. That's the purpose of hospice: to stop treatment protocols and revert to comfort protocols instead.

Be sure you understand the purpose of hospice before you proceed further with them.

They should understand YOUR desire to approve her meds beforehand, but if she's at home and you're doling out the meds, just don't dose her if you're against doing so. The purpose of meds is not to have mom agitated, however, but CALM and relaxed instead, not feeling pain. But not having allergic reactions and/or waking up with dried blood in her mouth.

A med review is definitely in order here along with a review of your expectations of hospice and their service plan moving forward. There should be no surprises for you in store. And keep in mind that you have the ability to fire them at any time and take mom to the hospital for further treatment, if you think that's a beneficial thing for her.

Good luck to you.

Mary,

One other thought that I would like to share is that if you are not completely satisfied with the hospice organization that you currently have, look into other hospice services.

We especially liked a particular nurse that was working with the hospice organization that cared for my mom. She was fabulous.

She told us that she decided to work for a different hospice company. We liked her so much that we decided to switch to her new hospice organization. She was very fond of mom and didn’t want to leave her and was glad that we followed her into her new workplace. Mom felt comfortable with her and formed a bond with her. We trusted this particular nurse with mom’s care.

So don’t hesitate to investigate other options. It never hurts to get other opinions.

My mom was given Ativan and Seroquel in hospice. Mom had Parkinson’s disease and dementia as she approached the end of her life.

She did well on both meds. We were informed of the dosages that she took, which was very low. She remained calm while taking them and had no adverse side effects.

Everyone reacts differently though so I would definitely speak to hospice about your concerns.

My mother died peacefully in hospice.

Wishing you and your family comfort during this difficult time.

Avoid Haldol. Many years ago I read about in the physicians Desk ref. It was I’ll-advised for the elderly. I have seen two people with a “side effect” of haldol - tardiff disconesia” - uncontrolled muscle spasms. At that time there was no way of stopping this condition.
Haldol is useful for calming dangerous mentally ill criminals. It is bad bad bad for elderly people.

Get hold of the prescribing physician and tell him/her you want a medications review. Stat. Jump up and down and shout if you have to, to get it done; because it's probably not okay just to stop what your mother is already being given so you don't have the option of blanket refusing meds on her behalf.

What does it say in her notes? Do you have access to them, or is your brother making the decisions?

Thank you everyone; it's nice to feel one is not alone! The situation is now worse, and hospice is sending a nurse. Her face and mouth and tongue are increasingly swollen; she is in pain. The hospice answering service told me 'Ok, you can give her more of the drugs while you're waiting for the nurse to arrive' (!!!) I just inadvertently yelled 'Noooo!'. OK, she was 'agitated, fidgety' before which is why they prescribed the haldol. But not aggressive and in no danger to anyone. Once she started taking it, she started hallucinating. It's like drugs are the only answer to anything for hospice. I don't get it. My mom's vitals are (were) all good yesterday...they even said 'she is not near death'. But today, after these drugs? She looks terrible; pale, almost yellow, with her face all swollen... Let's see what the nurse says when s/he comes. I thought hospice was all about the patient's well being, but I'm having my doubts...

I read about this medication. Lots of side effects from it. I would demand that it be stopped since it seems its not helping Mom.

Just because these meds are part of the hospice tool kit doesn't mean
they are appropriate for every case and they must be used, don't let anyone tell you your concerns aren't legitimate, if she was doing well until medicated then you are absolutely right to be concerned. I'm sure you don't want your mother to suffer needlessly, but if she was/is not suffering she does not need the medication. My mother did receive haloperidol (haldol) as well as dilaudid, but only once she was obviously transitioning to the end of life - at that point I was grateful there were meds available to dope her out of her mind and ease her passing.

You have the final say about what your mother takes(as far as medications)or doesn't take. Hospice can suggest what they think is needed, but you again have the final say.
My husband was under hospice care for the last 22 months of his life, and Haldol was only suggested once he started his 6 week dying process, so I would certainly be questioning why they think it necessary at this point.
And it's ok for you to put your foot down and tell them to stop giving it to her.
If she lives with you, it's as simple as you just not giving it to her. And if she's in a facility, you just tell hospice to drop the order for it.
I'm sorry you're having this issue with hospice. It's my experience that you have to really stay on top of things when dealing with them.
And as been suggested, you can always switch hospice agencies if you're not happy with the one you have.

Maryandy
You can change hospice anytime you feel you aren’t comfortable with the one you have. You can also ask for a different nurse with the same hospice. Call them and ask for a consult with the doctor or NP or doctor rep regarding her medication.
If you are speaking with the LVN or CNA they may not have the authority to make changes in the medication. Regardless you need to feel comfortable that what you are doing is best for your mom.

It's your mother. You make the decisions. If you don't want your mother drugged, then demand that it stop.

My mother takes no antipsychotics, antidepressants, benzos, etc. I took her off of MiraLax because of it's made of polytheylene glycol - horrible for anyone, especially elderly and children.

I'll never be convinced that drugging the elderly is a good thing.

When and if my mother transitions into hospice care, I'll be the one to make final decisions.

You can request that the medication be discontinued.
I find it odd that they began giving a medication before she needed it.
Did they give you a reason for starting the medication? If she was comfortable prior to starting then it should be able to be discontinued. IF she begins to show signs of agitation, anxiety they can try another medication.