MC and refusing cancer pill

WhatNow?

So we placed mom into MC in the beginning of May.  It took a couple of weeks, but she did settle for the most part.  

Then in mid June something happened to make her think someone was waiting outside for her and it got her very agitated that she couldn't go outside to meet them.  She almost hit a staff member during the episode.  It took her about a week to settle back down and the swamp of phone calls from her to dwindle back down to one or so a day. 

Well it seems since then she has been refusing her pills.  When she was living with us (1.5 years), we had issues with this initially but finally got her on Donepezil and Namenda, and in a routine and that seemed to smooth out everything.  She was probably taking around 8 pills, but most of them were vitamins.

Well now she is refusing her medication in MC.  They called in a geriatric psychiatrist and it kind of caught us off guard that they recommended stopping all of mom's pills, but her cancer medication, which is one tiny pill.  We were actually thinking they may prescribe something for anxiety or depression, but didn't.

Even with that, she still is refusing the one tiny pill.  It has reduced her cancer by about 40%.  She does have stage IV breast cancer, so it will never be cured, but it was working well to keep it at bay.

I have attempted to find out what it would take for her to take it and recently provided that information as succinctly as I can to the med techs for her, but after one or two days of having the information she is still throwing her pill in the trash or on the ground.   I know I shouldn't laugh, but I do at just the circumstance of how bratty she can be.   I feel sorry for all the techs that have to deal with her difficulties...just because we have been there too.

I know pills can be a big point of contention as well as showers, but I'm a little at a lost as to what to do next, as is the facility.  It does raise the question in the back of my mind as if this is the right place for mom, but she does seem content otherwise and is actually in pretty good spirits when we visit and participates in activities and even hangs out with some of the other ladies in the activity room.

So, what is next?  Do I go there to watch how they approach giving mom her pills and see if it may be how they go about it or do we just call it and say this is part of the disease and it is what it is?  Is there anything else worth trying to do?

I have talked to her oncologist and so he knows of some of the challenges we are facing, but I don't think really gets how difficult it can be when also dealing with AD.

Any thoughts or recommendations from others that have been through something similar before?

dayn2nite2

What is this “cancer pill”?

If she were to have cancer would you even treat it in a person with dementia?

I’d let her skip it, in my experience even cancer is a kinder death then stage 7 dementia.

M1

I would also be curious as to what it is.  A lot of the newer cancer medications are very expensive:  hate for you to throw your money away, even if it is covered by her Medicare part D.  If she's going to refuse it, I would think about Hospice.   And the only thing I would discuss with the oncologist is that metastatic breast cancer can be a pretty painful way to go.  If keeping her on it would prevent pain, I would have them give it in food if they can.

WhatNow?

Thanks dayn2nite2 and M1!

We have been very lucky on the cancer front so far.  The breast cancer she has is one of the least aggressive.  She takes a pill that blocks her from making estrogen and it is only about $1 a month or less.  Luckily it has been on the market for a long time already.  And so far she claims she feels well and not in pain from anything.  

This tiny cheap pill has been doing its thing and shrinking the tumor for about a year and a half now.

She could take another pill to potentially make the one that she is on work a little longer, but we opted against it since it would have been 3K or 4K a month.  We also know we wouldn't do additional procedures, like chemo or surgery if they were offered now.  It would all be about pain management when it comes to those types of decisions.

My biggest concern with the cancer at this point would be how painful it would be as it progresses.  She has a metastasis in her skull and I've heard any time cancer is involved with bones it can really be painful and cause brakes...not something I want to have to experience, especially with someone that has dementia.   She already also has the start of osteoporosis.

I know MC didn't think they could get away with putting it in her food, because she is a very picky eater, and still aware enough that she would probably find it in anything they put it in. 

I have also thought about hospice and if this would speed up how soon that would be able to be enacted, even without a 6 month life expectancy.

M1

The hospice rules for dementia are more relaxed than for other diagnoses sometimes.  Can't hurt to ask, if they don't think she's ready they'll tell you.   You do not need a doctor's referral, you can ask for hospice evaluation any time.

Quilting brings calm

I wouldn’t worry about any of the other pills.  The two specific ones you mentioned are to try to slow down the symptoms of dementia. most only work on the early to moderate stages if even then. Also some people say only for a year or so too. She’s already in MC so the time period for effectiveness is probably passed. No point in fighting her about taking about those meds. 

I’d stop the vitamins too. Why fight over them  

I’d go with the geriatrics psychiatrists opinion on mood stabilizers unless her agitation starts making like difficult for you or the staff. 

You mention that a different cancer pill would probably work longer than this one. Does that mean this one is coming to the end of it’s effectiveness? If so, why fight about it?  If not, let them try but accept it may or may not be taken on any given day, 

She’s got metastatic cancer bone and breast cancer.  Call in hospice and do what needs to be done to keep her comfortable  and pain free for the rest of her life. 

dayn2nite2

If it’s metastasized to her skull, call hospice and forget the pills.  They will make sure she is comfortable.

LaurenB

I'm tempted to say that if she is refusing the pills that this is her way of communicating that she doesn't want them.  I'd respect her wishes and sign up for hospice if they will have her.  When it starts to get bad, hospice can prescribe liquid morphine that is placed under the tongue.  No real need to swallow it.  Why struggle with her several times a day and aggravate her?

kemobetter

What decision did you make regarding your mom? I’m interested because I’m in a similar position now and your situation really resembles mine. My mom also refuses the pills in the facility and tries her best to show she doesn’t want to take them, even though she has clear signs of dementia. She has also been taking anti-cancer pills from the list https://www.pillpal.to/anticancer-1828, and she has no problem with that. It looks like she doesn’t like tranquilizers and other pills for her mental illness. And I don’t know what to do because I feel that if she doesn’t want them, then it might be not the best for her.

WhatNow?

Hi Kemobetter,

We talked to my moms oncologist a while back and he mentioned that some is better than nothing, so we continued to have the MC facility offer it to her and if she took it great and if not oh well.  They are fairly cheap so no big deal.  I also think the MC facility staff got better at finding what worked for her so it did become more routine.

There is definitely a time where you have to weigh the positives and negatives and if something is causing more agitation than it does good, then just realize that if it isn’t really needed then maybe discontinue it.  We did stop all her other medication for dementia earlier because it was causing her stress.  And we aren’t physically taking her to anymore oncologist appointments, re-stagings, or bone shots for her metastasis.  She isn’t getting out of this alive, so my goal for her has always been to try to keep her comfortable and content when I can.

Good luck!  Sorry you are going through this too, it sucks!  I hope you find something that works for you and your mom.  This journey isn’t easy at all is it.  Another option might be to hid them in something if they can be crushed, but not all medicines can be.  

Jo C.

Has your mother been checked for a "silent" urinary tract infection?  These UTIs are called "silent," because they have no physical symptoms, but they can make changes in behaviors to the negative side of the ledger; sometimes dramatically so.  This may (or may not) be part of the issues you describe.

As for the vitamins and dementia meds, they are of no consequence if stopped.  The dementia meds help some people some of the time for a limited time period.   If there is a way to softly get her to take her "cancer" med, then it would be good to do it. I do not know what the pill is, so I do not know if it can be ground up to put in food.  Do you know the name of her med?

NOTE:  However, neither Tamoxifen or Letrozole can be crushed, they must be swallowed whole. BUT they each also come in liquid form and can be taken with food which may possibly make things easier.  Whatever the drug is that she takes, it may have a liquid form that can be taken with food.    It is important to be able to keep the control of the cancer present if it is possible that can be done.   As M1 has indicated, that increasing or additional mets can become excruciating and highly negative in other ways; she does not have that hellish situation at this time as the drug has been helpful and has even shrunk the size of the cancer; that is a significantly positive outcome. By the way; M1is a physician; I am an RN; (Administrator of Patient Care Management), and also worked on an oncology unit for awhile early in my career and can tell you cancer is often NOT more comfortable than dementia.

One can also try to work out an good approach with staff and that they are communicating well and not making things worse in their approach.  If successful even half the time, that is good. If not successful, then that is what is and once can change course. 

I wish you and your mother the very best outcome,

J.

jfkoc

I don't think it is allowed to give out professional information about other posters.

Jo C.

If a Member has not openly stated their background or actual profession on this Board, it would not be appropriate to mention the profession or background if one knows what it is.   However, in this instance, the Member giving valid information input has been quite open on this Board about their profession, so it would be in such an instance within boundaries to mention it especially if the information being given is something a bit technical in addressing a concern  related to that Member's professional knowledge; this way, in context, the other Member who has put forth their problem issues will be more easily be able to realize the factual validity of the input being given which otherwise may be felt that it could possibly be questionable.

We have MDs, NPs, PAs, RNs, Pastors, Care Aides and many others in a variety of other professions who openly share their profession and experience and this is sometimes referred to by other Members who mention said professions in context of the problem issue and input.  If a person does not wish for their profession to be known as some Members have, they choose not to mention it in such an open public arena.

Good question, Judith, thank you.

J.

kojicraps

What decision did you make regarding your mom? I’m interested because I’m in a similar position now and your situation really resembles mine. My mom also refuses the pills in the facility and tries her best to show she doesn’t want to take them, even though she has clear signs of dementia. She has also been taking anti-cancer pills from the list td https://www.pillpal.to/anticancer-1828, and she has no problem with that. It looks like she doesn’t like tranquilizers and other pills for her mental illness. And I don’t know what to do because I feel that if she doesn’t want them,then it might be not the best for her.