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?
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.
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.
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.
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.
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.
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
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.
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?
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
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))).
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.
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.
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.
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.