Follow
Share

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?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I hope you have the medical power of attorney for your mom. With that in hand, you can tell the friend (kindly or not -- your choice) that it's time for her to step back and remove herself from your family matters.

Even if you don't have medical POA, this woman has grossly overstepped boundaries, and she needs to be told that either she supports your mother's decisions or be banished from contact with her.

Not to be the true Debbie Downer, but I can't imagine any therapy is going to be significantly helpful to someone with cancer throughout her body. It may buy her some time, but at what cost? Your mom has made her position clear. She will be getting weaker and less able to fend off pressure from the friend, and it's your job to help her choose the quality of life she desires.
Helpful Answer (18)
Report

I just hate when things are taken out of context.

I am so sorry this has happened to you and you are being made out to be a villain.

I don’t know what I would do. Obviously, you are supportive of your mother and what she desires. It’s up to your mom to decide her own medical care.

I am sure that you don’t appreciate that your mom fabricated a story about you to tell her friend.

Do you have any idea why she would do such a thing? Is she looking for sympathy or attention?

I wish that your mom’s friend would have spoken to you before automatically believing what your mom said.

Best wishes to you and your mom.
Helpful Answer (10)
Report

Please honor your mother's wishes and inform her friend that is what you are doing. It is too late for Keytruda now. Her cancer has metastasized everywhere. Please don't prolong her pain. Please get her into the hospice and palliative. Follow her instructions. And stick to it, as she is actively dying now, and is likely to be in and out of confusion. Please ask hospice to relieve her pain, even should the administration of medication enough to stop pain does speed her death by some hours or days.
Your friend, her friend, is suffering, and well intentioned. BUT your mother has made her wishes known and you understand them. YOU are responsible now to follow her guidance. Tell the friend that gently and once. Whether she forgives you for not doing it HER way rather than your mother's is neither here nor there at this point. You, in my opinion, owe it to your mom. I promised my Dad I would stand between him and anyone who interfered with his wishes with a shotgun, and I would have done it if I had to. That's my opinion. If the doctors are being honest with you they will tell you it is too late for keytruda to do anything but give your mom a few more weeks of misery, if that.
As to the caregiver "painting you" as anything, then SHAME ON HER, and ignore her. Continue to fight for your Mom's protection. Taking her from hospice and into treatment is almost certainly a mistake; I think the suffering you would see as a result would make you wish you had not been guided by someone in deep denial to the reality that your Mom is actively dying now. Please discuss all this with hospice and let them intervene FOR you when necessary.
Helpful Answer (23)
Report

The MRI would have finalized Moms decision. It would have shown if the Cancer had spread to her brain. If so, definitely Chemo would not help. Alva is a nurse and I agree with her, Moms cancer has gone too far. Drs have to give you options. Even if Chemo brought her 6 months what would her quality of life be. My sister did 8 months of chemo for that one little cell. She was done in June and passed in October. She was treated for breast cancer but died from brain cancer. Would she have lived just as long without the chemo?

I agree with Alva. Mom's wishes need to be honored. She is tired and in pain. The medication is probably causing Dementia like symtoms. The chemo can cause problems too. Call her doctor and order hospice. Tell her friend that Chemo will not help now. Will just prolong the inevitable. She has to let Mom do what she needs to. I think we know when enough is enough. Let Mom have her rest. She is tired of fighting.
Helpful Answer (17)
Report

Keep your focus on your mother's wishes and know all the reactions from others will happen with or without you as the cause. Unfortunately, it will be directed at you. Emotional assaults pass in time. Wishing you strength.
Helpful Answer (16)
Report

I think when some people are that ill, they know they are dying. At least that was my experience with my sister. One of the hardest things I’ve ever had to do was push her wishes with some family members. May you have strength to honor your mom’s wishes and find peace that you are doing this out of love for her, even though it is so difficult. HUGS
Helpful Answer (17)
Report

I am speaking as an RN here. Your mother is ready for hospice based on the state of her cancer. I believe the rest of her family is in "denial" and expecting that something like Keytruda will be a miracle cure. It will not, being that she already has metastases to her skeleton and liver. It would only buy her a little more time - like a few months. Why put her through more hell?

If your mother is adamant that she wants to be placed on hospice, then her wishes should be honored - despite what anyone else in the family prefers.
Helpful Answer (24)
Report

Watching three members of my family die of metastatic cancer it is my strong belief that you need to honor your mother’s wish for hospice ASAP. The best gift you can give her is pain relief and peace from this horrible disease. Often times people (friends or family) who want “everything” done have some unresolved issues of their own such as guilt for something said or done or regrets. Be strong and give your Mom peace.
Helpful Answer (11)
Report

I’m so sorry you’re dealing with this. Such a sad time for you with your mother, you don’t need the added stress of accusations and being blamed for what most certainly is not your fault. Your mother’s friend seems to be both in denial and grieving in advance. I wouldn’t discuss any treatment or hospice plan with her again. Your mother has made her decision for hospice care, your job now is to honor that. I walked through hospice with my dad, it’s hard enough without interference from others. When this friend is around please decide to remove yourself from any conversation that blames or accuses you of anything. You don’t need to explain or justify at all. You’re honoring your mother’s wishes, your only goal. I wish you both peace
Helpful Answer (13)
Report

You’re her daughter, honor her request. You will be glad you do for a few reasons. 1, hospice is going to take a load of stress off your back. 2, your mother can relax now knowing they are in place. 3, hospice is free & covered by Medicare. They will provide pull ups, medications, all sorts of things down to even nail clippers for free. 4, hospice will tell you what to do, how to do it & they will keep her at home in the end if she has a dnr so hospitalization isn’t involved. They provide morphine, Ativan & oxygen so things are comfortable if needed. Listen to your mother’s wishes. One note is that if she does get treatment that might help her, hospice has to withdraw because they are there for terminal patients. That doesn’t mean imminent, it means a diagnosis that could last for years but is permanent. Also hospice can come & go, it doesn’t always have to be in place. My mom had skin cancer & they had to withdraw until the treatment was over but now they’re back in place. I love it. I do errands & have a bit of time for myself when they sit with her. They are thoughtful caring people. I hope you call to implement hospice’s wonderful services. They have to do a home assessment to approve it so call today!
Helpful Answer (8)
Report

Family friend should not be making any decisions. Your mother is the #1 person to make her wishes known. Your would be next in line. Family friend is at the bottom of the decision making list.
Helpful Answer (12)
Report
Isthisrealyreal Jan 2021
Actually the husband is next in line, not children. Just FYI.
(1)
Report
C150flyer, firstly I’m so sorry to read about your mother’s condition and the understandable effect this is having on you, made worse by the behaviour of the family friend. I went through a near identical situation with my father, when he was terminally ill with lung cancer and metastases to the spine. A “family friend” laid into me when my father was close to death, and when I was in no state to endure this nor fight my corner. The result was that I was unable to be with my father at the end, and subsequently suffered PTSD and other problems from this abuse and the lack of kindness and compassion afforded me when all I really wanted to do was be close to my dad and stay with him until he had gone. I can never have this time back again to do things differently and am left with a terrible void instead of any comforting memories of being there for my dad. I still cry now, even thinking about it. Based on these experiences, my advice to you is blunt and to the point. Insist that the family friend backs off when it comes to such intensely personal decisions and situations. Make sure you fight to do what is right for your mum and you, without any interference from this person. Respect your mother’s wishes and support her through this. Shut the door on the family friend if she won’t give you this time and space to be with your mother. If you allow this person to dominate and interfere at this point you may lose whatever precious time you have left with your mother. I would hate for you to have the experiences I had.
Helpful Answer (9)
Report

Hardest decisions yet to come. Remember this is about your mom and not a unfortunate confrontation. Right or wrong.

My mom has hospice team that is helping with assistance.
Your stress level seem high.

My sister and i,,,have been advocating for my mom since 2010 dementia. Legally assigned by court. Medical guardians and financial accountability here.

We were angry, stressed and learning the steps to take.
We have good and bad days. But most of all I stand back and know that she doesn't control this disease it controls her, so when hurtful words or frustration comes from her we work with it instead of against it.
We also had a cousin that believed my mom and the mid truths she was discussing with them. Even when they knew she was deteriorating with Dementia. But we didn't stop her talks with him.
He has passed recently. My mom is abilities to manager cell phone was failing and also she hid them and said it was stolen. So we just discontinued the cell phone and things just workout. But you'll find on your own road and you're on challenges that you will have different things you will have to do.

Remember this is your mom's contact friend...you do not need to justify yourself to her.

Good luck and breath
Helpful Answer (4)
Report

Hospice will evaluate your mom and decide if she is eligible. It sounds like she is and is clearly asking for that support. We just put my mom on hospice. It is wonderfully supportive. She even has music therapy- a lovely young woman comes to the home with her guitar and sings songs. It is uplifting to mom.
I would schedule them for an evaluation. Her friend means well but shouldn’t be calling the shots or going on the attack. So when alone maybe you can talk to your mom about why she is thinking those things of you. When my mom was accusing my sister of horrible untrue things we think it had to do with wanting control of her life back. Having hospice might relax mom as others will be in charge of her care not you or her friend to argue or cajole. Take care and do something nice for yourself. This is hard.
Helpful Answer (6)
Report

Did you get the results of the MRI? maybe the "friend" could watch your mom 24/7 for the next 2 weeks while you and hubby take a vacation.  Remove all financial and important stuff from "the friend" finding anything and go away, even if in a tent to a campground or a camper.  I am surprised that the 'friend" would even consider believing your mother especially if she does help and knows of her medical issues and now the confusion.  Maybe speak with the friend and let her know that you no longer need her help but use your mothers finances to hire someone to come and help out.  I am sure your mother is in pain and hopefully you can get that remedied.  Have you tried the new medication for the cancer and what are the percentages of her recovering?  maybe your mother (sorry to say) just doesn't want the pain anymore and is ready to "go home".  if everything else fails, get ahold of hospice and let it be.  that is your mothers choice.  I wish you luck with everything, it is tough.
Helpful Answer (3)
Report
NYCmama Jan 2021
I would never allow the "friend" alone with the run of the house for any length of time - she has her own agenda and I think it would do more harm than good. The plan of care should be what the mother wishes. I agree with everything else. Its a gut wrenching situation.
(6)
Report
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!
Helpful Answer (7)
Report

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?
Helpful Answer (6)
Report

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.
Helpful Answer (8)
Report

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
Helpful Answer (11)
Report

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))).
Helpful Answer (10)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (9)
Report

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.
Helpful Answer (8)
Report

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.
Helpful Answer (10)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (8)
Report

If your mother lied to her friend about you then the villain is your mother, not the friend.
Helpful Answer (1)
Report
Countrymouse Jan 2021
The mother is seriously ill with cancer, has unalleviated pain and may have brain metastases. She's no kind of villain.
(6)
Report
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.
Helpful Answer (4)
Report

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.
Helpful Answer (8)
Report

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.
Helpful Answer (5)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter