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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?

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I agree with many of the previous posters, hospice is the way to go. This other person needs to either be cut out of decision making or told to sit down. My mother has both cancer and advanced dementia, hospice has been a godsend. Honor your mother's wishes. I had a very close friend of my mother's criticize the decisions my brothers and I made and told me " Well, if you made her stand barefoot on the grass for 10 minutes a day her dementia would be cured."
As a side note, I'm in the complementary health care field an couldn't even fathom where she got this bit of information.
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This friend/caregiver needs to go. When my mom was alive she had a caregiver that seemed perfect. Like a Mrs. Doubtfire. Kept all the household needs on track. Very efficient. Had cared for her own elderly parents. My mom seemed to like her, which seemed odd to me just because she was slightly bossy. But she did, so I pushed back my concerns.

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!
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I can imagine the pain that caused you. My mom lied to the home nurse on her visit , told her I hit her. I wasn’t prepared for the pain the act of deception it caused me. I’m sure it’s still going on with my mom telling lies ... my aunt recently texted how the Bible says to honor your mother and father. My mom lives in a separate state , I take care of everything from here. Call every other day... who knows what lies she tells.
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.
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Just tell her her help is not needed anymore . You could hire a caregiver to help out with your mom .In that senecio , you are the boss . Good luck.
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MysteryShopper, your experience makes me so angry. What makes these interfering busybodies think they have the right to involve themselves in other people’s extremely personal situations? One can only assume they have such otherwise empty lives that they have to wade into other people’s. Under normal circumstances you might ask them to back off (setting those boundaries again) but when you are facing such a traumatic situation you have no strength to do this, and so the damage to you is done. These type of people need to take a good look at themselves.
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I've had the "you need to be a cheerleader" comment thrown at me as well by someone who claimed to be "helping" me provide care to a LO. As if my lack of "cheer" was the cause of LO's decline. I also received the "Don't acquiesce" remark as well as "You know better than to believe those doctors (or insurance companies, or scholars on the subject, or statistics on the illness. etc)." I was also told that "So and so had the same thing and they got x, y, and z for treatments. You much not be advocating for Ruby very well or Ruby would have gotten those things too." This was followed by her instructing me to call a general 800 number to "get information" on options (we were WAY past something like that). After all that happened and decisions I should not have been making within a situation I probably should not have been in, the same meddler/helper then accused me of giving up (reality was I was probably on the verge of a breakdown but was still chugging along) so that I could put 'Ruby' in a nursing home to cruelly abandon her in a facility that will undoubtedly neglect her and take years off her life, etc. I would have loved to shut out this helper (and LO would have done emotionally better without her), but LO asked for this person and WANTED to see her. There was no getting rid of her. I am so sorry you're faced with someone second-guessing everything. My guess is that this lady is grieving the situation and is looking for a fix-it to relieve her own pain. Deep down, I think my meddler/helper was experiencing the same grief - but that sure didn't help me in the moment when I was on the receiving end of her accusations, interference, and attempts at manipulation. Do what you know is right.
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My Fiancé had Stage 4 lung cancer that had metastasized through his body, just like your Mom. His Specialist could have successfully treated the initial tumor, but what had spread could not be treated. Because of that, he was not given a good prognosis, or long to live. We called in Hospice, and I am so glad we did. They were a true comfort. Most importantly, they were able to keep him out of pain. That should be your number one goal for her, I think.

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.
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cherokeegrrl54 Jan 2021
You are exactly on point! Ive been in those shoes too. Excellent advice....
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Your mother has repeatedly asked for hospice, contact hospice. It is not giving up, it is comfort care. They will also help you with dealing with all of the many emotions that comes with this. Let your mother have the Peace that she is requesting.
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babsjvd Jan 2021
Yes Yes Yes
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I would think that you, as a family member, could 'easily' override a 'friend' in managing your mother's care. If I were you, I would find out if a legal restraint could be in place of this 'friend' who is interfering with family decisions. A 'friend' like this doesn't really alleviate 'some pressure off of us.' She is adding fuel to the fire. In no uncertain terms, she should not be allowed to contact your mother.
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Use your mobile phone to video decisions your mother makes. Then when the friend accuses you of anything, have her watch the video and proceed to do what is in your mother's best interests, as she has expressed during lucid moments assuming you are her medical PoA. The friend needs to understand what the treatment is doing to your mom's brain function. She will believe your mom's own words. You will also be able to show it to your mom when she seems to change her mind on important decisions. Otherwise she will unintentionally be whipsawing you around and wearing you thin, as you already are. May your situation end with peace on all fronts.
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I have no answer but I can say you’re not alone . I’m right there with you. If I had to guess, I’d say you take care of your mom physically and the other person takes care of finances, checking in for 5 minutes every other day. Even if I’m wrong about that , I know what you’re going through. All I can say is keep your eye on the heavenly prize. God knows your work. God bless you . And in case nobody’s told you lately, thank you for all that you do.
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Has your mother appointed a health proxy? If so, or if she were to, would it be her friend or you?

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.
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I am sorry your mom's "friend" seems to think she has the right to put you down, spread lies and rumors, and attempt to tell you what's best for YOUR mother. If mom chooses to try treatment she can still be on a branch of hospice called palliative care which allows her to seek treatment but they will help with pain management for mom. If her treatments work great, if not it's a very easy transition to regular hospice. Either way they are there for mom. You and your husband need to set boundaries with mom's toxic friend or tell her you no longer need her assistance if she gets out of line again, telling her that you will let her know when or if it's convenient for a visit with mom in a stress free environment, dont call me I'll call you. Sounds like she is trying to portray herself as a sainted friend while spreading lies. I know this is not nice of me but is mom's friend married? You mentioned a stepfather, could it be she is trying to make you look bad to look good in his eyes? Her mentality is she'll be there for him when the time comes, that he will turn to her in his time of need and grief, stranger things have happened, actually had one of MIL club friends say that's how she snagged husband #3🤦‍♀️🤣 another one with zero filters.
Bottom line do what mom wants and what is best for her.
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Dear c150flyer: If your mother wishes to have Hospice, then she should. Take no heed to the hurtful discourse of the troublesome family friend/co-caregiver, lest it causes you to lose focus on the most important task at hand, which is your mother. I, too, experienced this in regard to my late mother, e.g. having all kinds of so called friends and less-than helpmates suggesting what I should or should not be doing in regard to my out-of-state caregiving to my mother. I had to leave my home, my family and everything else behind to move in with my mother to provide care for her. I dismissed suggestions, deeming them inappropriate as they were NOT in the active caregiving role. Prayers sent to you, c150flyer.
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Think 6 months down the road, 12 months, what is more important? Maintaining your "friendship" or honoring your mother's wishes? You don’t make it clear id the friend is your mother's or yours. What would you want if it was you in your mother's shoes?

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.
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TekkieChikk Jan 2021
Went through the same thing with my mother. She told me that choosing hospice was the last thing she would ever have control over. I wanted her to see experts and consider experimental treatments but she was done, the cancer had taken too much from her. C150flyer, it's possible that your mother feels the same.
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If your mother wants hospice, she should have it. She may not be willing to go through all of the time and effort and side effects of trying to cure her cancer. Spending lots of time at the doctors and being tested is not quality time. Sometimes the kindest thing is to let nature take its course. The goal of hospice is to make the last days as comfortable and happy as possible. Talk to her friend and explain that you want to follow your mother's wishes. If the friend can't keep things on a positive note, then it may be best not to have her around. Something very similar happened to my husband's sister. She was ready to go, but the family could not face it. They and her doctor talked her into an operation, which failed, and she spent her last days in the hospital rather than being happy and comfortable at home.
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Your mother has requested hospice and it’s time. As POA for my mother who has dementia and other physical ailments (she has always lied and demonized her family), I had to make a decision to block some of her so-called friends from contact or involvement in her care. I had to stand up for myself and do what I knew was right for my mother. Don’t take her storytelling personally. She sounds very sick. Hospice will be able to provide her comfort both physically and emotionally and support for you as well.
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I am in agreement with all who suggested that Hospice be contacted. This is what your Mom wants, so her wish should be honored. I have heard of nothing but wonderful praise for Hospice.

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.
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If your mother lied to her friend about you then the villain is your mother, not the friend.
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Countrymouse Jan 2021
The mother is seriously ill with cancer, has unalleviated pain and may have brain metastases. She's no kind of villain.
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I tend to have a suspicious mind. I am wondering what might be motivating the caregiver. Could she be accessing your mom's finances without your knowledge? Or trying to get your mom to rewrite her will and leave things to her by inciting her to turn against you?

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.
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You are doing a great job covering all the options. I have edged unhelpful relatives and friends, as much as possible, away. Have the hospice interview, they will tell you when it is the right time. I had several to choose from for my grandfather, we did hospice in my home. My family was in control of all the day to day stuff as hospice directed the path.
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I would tell the family friend that her services are no longer needed. In other words, fire her. If she insists she can help, then have her trespassed by the police. But that's just me. I won't take much.
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Your Mom has made it clear to you what she wants, don't second guess it and don't listen to her "friend". Your mom's wishes are paramount. You have enough stress on you now and for sure in the days to come - you need support and not criticism from someone who may love your Mom, but has her own beliefs which are not in line with your mothers. It's that simple.
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.
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As an RN, I learned not to impose my value system on my clients/patients, I learned that each person and their family must decide for themselves on treatment options and care.

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.
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I would ask her primary physician to order home hospice for her. They will come in every day if you need it and can assist with pain management, meds, and other comfort care. They will also send whatever supportive services and supplies are needed to take proper care of your Mom. It is in your Mom's best interest to do what she is asking for, and she will likely be far happier. Medicare pays for hospice care when it is physician ordered. You have to ask the Dr., as many times they don't offer it until you ask. You need to speak up!! Whoever this other 'caretaker' is, unless she is a blood relative, has no legal say in your Mom's care. I would recommend getting your Mom to agree to giving you Power of Attorney and explain to her why it is important. Because she is terminally ill, things could change at any moment, and unless you are her POA, you have few rights to manage her affairs. I have been through this with both my parents, my Dad passed in 2017 and my Mom, 93, lives with us. We have been her caregivers for over three years and have home hospice three times a week. They have regular visits and weekly reports are filed to ensure that all of the proper protocols are being followed. We use Kindred Hospice, and they are fantastic. I don't know how we would survive without their help.
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Your mother is dying, please love her enough to give her as close to a pain free death as possible. I don't know if you have had Chemotherapy or not. I have and it is not a walk in the park. I looked up the side effects of KEYTRUDA.. Notice it says "common".

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))).
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Hospice isn't about dying but embracing whatever life there is in quality. It is not about 'giving up'. I had a dear friend diagnosed with pancreatic cancer and it spread to her liver. She had been undergoing therapy. Having been a hospice nurse, I suggested it. She said she was going to beat it and didn't need Hospice.

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
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I am so sorry for what you are going through. My Dad died of lung cancer that was diagnosed at Stage 4, when it had spread everywhere. He died 2 months later. That was 13 yrs ago and it was awful. We didn't call in Hospice until very near the end because my step-mom saw it as "giving up hope." Who knows what she was hoping for. A miracle, I guess. As he neared the end, it was obvious the cancer was in his brain because he developed vision problems. Then, in his last week, he thought my poor baby sister - who took night duty - was trying to kill him and, although he was too weak to stand, he still managed to physically attack her. The hospice doctor came and medicated him to calm him enough to get him to the ER. I met them there and, as I sat with him and the drugs started to wear off, he gave me a chilling look and said, "Robyn tried to kill me and you were in on it." While I know in my head that this was NOT my Dad talking, I will never be able to erase the memory of that look and those words. My poor baby sis still has scars on her arms where his fingernails scored her. So I understand and my heart breaks for the pain your mother's words are causing you. But that's not your mom talking, it's a disease that is overtaking her. I am so sorry for your pain and I hope you can get your mother into Hospice quickly. For her sake as well as yours. While her friend may not see the truth, I hope your family does and that you have their support during this horrible time.
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Protect yourself
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?
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I would tell the friend you know who you are and what the truth is and you are acting in the best interest of your mother no matter how she sees it. Thank her for a her involvement and tell her that if she wants to be involved going forward there will be differences of opinion but you are going to continue to act in what you feel are the best interest of your Mother. Repeat like a recorder and try to let the rest of it go. Your mother is not herself and will not be with this disease running the show. People will not always do everything right in trying times, yourself included. You are doing your best and that might be different on a trying day but still your best. You are a wonderful daughter!
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