New caretaker and first post. I so appreciate your thoughts and guidance on the below issue:
My mother was recently diagnosed with stage 4 cancer primary to right lung but with extensive metastases to liver and throughout her skeletal system (skull to hips). She has a malignant pleural effusion and severe bone pain which is so far uncontrolled. She has repeatedly stated that she wants hospice (which I support if she wants it), though she has an extremely promising bio-marker (PD-L1 @ 90%) which indicates that her cancer could be very responsive to Keytruda, an immunotherapy. Obviously I support this as well if that is the path she chooses.
Mom has been experiencing cognitive side effects from her pain meds which often leave her forgetful, repetitive, and contradictory in what she says, but she remains mostly adamant about wanting hospice.
A family friend has also been instrumental in assisting with caregiving and she is vociferously opposed to hospice, given the promise of the treatment. Her belief is that I need to be a bigger cheerleader for the treatment and to not acquiesce to her repeated requests for hospice.
The other day, I called her oncologist to express my concern for the severe confusion my mom has been experiencing. The doctor ordered an MRI of her brain to check for metastasis there, which I assumed the upcoming PET scan would show (apparently it doesn't). Getting her to agree to the MRI was difficult.
After significant difficulties getting her there (pain, anxiety), while in the waiting room, she told me she could not do the MRI and she wanted to go home and do hospice. I gently pushed back, reminding her that she had agreed to do this and that the doctor had wanted to get a picture of her head. She said some very hurtful things to (at) me and eventually I relented and brought her back out. I asked her friend to help calm her down, and she eventually did convince her to go in and do the MRI, with her friend there the whole time.
I later learned that my mom, in her agitation, told her friend untrue things including that I yelled at her, called her several names, etc. Her friend believed her and has proceeded to give me the cold shoulder. Needless to say, I was immensely surprised and hurt; both that my mom would say false things (which I had already mentally braced for, at some point), but gobsmacked that the friend believed her.
By the following evening, I told the friend that we needed to talk. My husband was next to me. The friend proceeded to lay into me with a 15 minute vicious vitriol about how I went around my mom's back by "asking" for the MRI, how the trauma of the MRI ruined any chance of mom acceding to therapy, how I needed to be a cheerleader and not acquiesce to hospice, about how much physical damage happened to her while in the MRI room with my mom to keep her calm. It was ugly.
She does care about my mom, and she does provide a lot of help that alleviates some pressure off of us. But this outburst to me, the way delivered, the falsehoods thrown at me, the medical nonsense she spouted, and then subsequently trying to demonize me to my stepdad and my mom's neighbor friends is difficult to bear.
I felt like caring for my mom was close to the limit of what I could handle, physically and emotionally, but not past my limit. This new stressor feels like a crushing burden and I feel like I have to walk on egg-shells to keep the peace and keep my sanity. I don't know that I have the strength to do this while another caretaker is seemingly out to paint me as some mal-intentioned negative-nancy debby-downer saboteur to anybody that will listen.
I don't know what to do?
As a side note, I'm in the complementary health care field an couldn't even fathom where she got this bit of information.
Over time I noticed some odd behaviors and after reflection realized she was almost "grooming" ME...like an authority figure does with with a child s/he is going to molest. Only in my case it was to undermine my belief in what I was doing regarding my mom, undermine my confidence in what I was doing. I am a pretty strong, confident person, but she was so smooth and subtle that it worked for a time. Then she started pushing harder and I realized something was off. A couple of times she revealed anger/rage that I think was simmering under the surface.
I wrestled with the situation. I talked to my mom diplomatically several times and never got a negative vibe - my obvious main concern was that this helper not be abusing my mom in any way - I don't think she was. I hated to get rid of her because she was so competent and capable, but my gut feelings continued to get stronger and I soon after told the agency to send someone else.
About a month later I got a call from Adult Protective Services alleging a complaint being filed on me with regard to treatment of my mom. I met with the rep and we agreed that the complaint had been bogus. So case closed. I never got definitive word on who made the complaint, but I am convinced it was the fired helper.
So...bottom line...go with your gut. You are the daughter and YOU run the show. No one knows and presumably cares for your mom more than you, so exercise that right, take charge, and get rid of this person. Best wishes!
I have not much for you , lay down ground rules, make it clear, if friend can’t follow them , she’s done.
try to separate yourself from the pain your mother will dish out.
It’s one of the hardest times of your life to get through. You absolutely do not need a negative Nancy putting in her two cents. If she can’t behave, tell her you’ll call her when your Mom’s time to go is near. Ignore whatever negative stuff your Mom is saying. Metastasis to the brain will cause all kinds of bad things to be said, as well as hallucinations (visual & auditory).
Stay strong dear, you’ll make it through. Your Mom needs you to be her guide through this journey she is on.
It sounds to me as if the outburst and the hurt you've experienced are the result of too many cooks adding to an already immense burden of pain, stress and fear - for all concerned, too, although of course mainly for your mother.
In making the choices, there are so many factors to consider, but you are all actually on the same side, your mother's side. Her wishes come first. Friend needs to realise that, and perhaps needs help treading a better-drawn line between positive thinking and wild optimism, but you're probably not the right person to tell her. Any counsellors or chaplains available?
[I'm afraid this won't help :/ - but what was the point of the MRI? To see if there were brain metastases, and..? What about it? What difference would finding them make to her treatment? I think the oncologist should be prepared to explain his reasons for pushing this unpleasant procedure on your mother.]
One thing is absolutely sure, though. If your mother consistently states that she wants to be admitted for hospice, and she has been supported to think through the possible treatment and has rejected it, then Friend is utterly, utterly wrong in saying that you must not "acquiesce." It's not your decision or hers, it's your mother's. Friend can be as well-intentioned and vicariously heroic as she likes about this - she's still wrong.
Is it the same oncologist who's got Friend all excited about the promising bio-markers? I'm not sure I like the sound of him.
Bottom line do what mom wants and what is best for her.
I recently made the decision to let my mother die. She had made it clear to me that she did not want heroic measures to keep her alive, no respirators, no life support. It was difficult but I honored what she wanted.
Regarding your Mom's friend, I think that she is fearful of losing your Mom and is hoping for a miracle. You might even try to talk to her. It's unfortunate that she spoke to you they way that she did, but I feel she's in denial and angry, regarding the situation.
Praying for peace for you all and comfort for Mom.
Can you do a family counseling session to come to a decision together? And then let the caregiver know the decisions have been made and either she supports those decisions or her access to your mom is over.
Honestly, at this point, I would not allow her to be alone with your mother.
Hard as it may be, you may need to freeze this friend out, and hire a replacement if needed. Surround yourself with people who support you and your Mom and you will have no regrets.
I am sorry, but it seems your mom's friend is imposing her values into your mother's care. She is not objective and she appears to feel that "not complying with her wishes as a friend" is dooming your mother to an early demise. The decision regarding your mother's care is primarily with her husband and secondarily with children of your mother. Seems your stepdad will need to step in to decide what care your mom receives. Then, he will need to notify you and any other caregivers on what the game plan is. If your stepdad is not mentally competent, gather all siblings to decide with your mom and stepdad the plan of care (nurses are great at helping to outline options). Please make sure to write it down in some sort of written agreement that everybody can refer to when caring for your mom.
If you mom's friend can not comply with the care plan, it is time to change the friend's role from caregiver to visitor or to doing ancillary help like cleaning. grocery shopping, and other less involved tasks. Please talk to family, other friends, members of faith community, and paid help to you care for your mom.
Common side effects of KEYTRUDA when given with certain chemotherapy medicines include: feeling tired or weak, nausea, constipation, diarrhea, decreased appetite, rash, vomiting, cough, trouble breathing, fever, hair loss, inflammation of the nerves that may cause pain, weakness, and paralysis in the arms and legs, swelling of the lining of the mouth, nose, eyes, throat, intestines, or vagina, and mouth sores.
Why would you even potentially put your Mother through this when there is no hope in the long run of saving her life? That "caregiver" is thinking with her heart, not her mind.
My heart and love go to you at this hard time. (((HUGS))).
Gently, I said to her, wouldn't it be better to develop a relationship with a team of experts now should she have worsening symptoms than try to involve them during a panic situation. As I was out of the country at the time and unable to support her in person, I asked her if she would do one thing for me. Contact Hospice for an evaluation only. If she didn't want it, she didn't have to sign on.
She called, listened to them and signed up that day. That team not only was able to keep my dear friend home to die, but helped her husband with grief support for over a year after she died.
This friend may believe the misperception that many (unfortunately some doctors as well) that Hospice is about giving up. You do not need a doctor's order to ask for an evaluation. That is one of the responsibilities of the Hospice team. Their medical director will work with your mother's MD and what the qualifications are to be accepted.
YOU need the support of a team like Hospice, not the judgments of someone who believes they know the answers.
Godspeed
Let mom talk to her PCP or other physician and/or case manager/ social services etc and give them her wishes.
When she tells them she wants hospice, let her share her wishes with hospice and let them guide your mother’s interactions with the friend.
You do not want to be the bad guy to your mom. Talk to professionals and let them be the ones giving advice. They should be able to walk you through this as your mother’s stress ( and yours) should not be new to them.
Is there other family?