My Mom (74) lives in New York has breast cancer and recently had a lumpectomy. Turns out she needs a mastectomy now followed by chemo and radiation. She doesn’t drive. She won’t take uber or public transport. I live in Oregon while my brother lives in Florida. My Dad passed away in 2021. She relied on him for EVERYTHING. She has 1 friend, doesn’t go to church, has no support network. I kept telling her to move to OR or FL but that is a very tall task.
I flew out for the lumpectomy and stayed for ten god awful days sleeping on the floor of her very unkept house. On the final day she asked me how much I weighed and told me I need to lose weight. I am 5’6 and weigh 180. I know this already and am actively working on it. Like, this is what you want to say to me after ten days of caretaking?
I’ve told her a million times I can’t deal with wound care or drains. She has to hire a home health care aide. She just grunts when I say this. Instead she says you will have to be there post mastectomy. She doesn’t ask, she just demands.
I told her I can’t fly out to drive her someplace that is 15 minutes away when radiation starts. It is unreasonable. Her elderly brother (80) is her neighbor and currently drives her to some appointments but the guy probably shouldn’t even be driving anymore. He has also expressed to me that I need to relocate to take care of her.
I just don’t know what to do. I refuse to uproot my entire life because she can’t get herself to treatment. My brother uses an excuse of having a shitty low paying job while I on the other hand am self employed which makes them both think I can drop what I’m doing to be the primary caretaker.
I am feeling so drained and annoyed at the entire situation and just don’t know what to do. I do not want to be her caretaker. She is completely incapable of doing things for herself without having a full meltdown. Like calling her doctors, printing out a form, picking something off the floor when she drops it. It’s like she wants slaves to do it all for her.
She also does this thing when someone does call to check in she pretends to have a sore throat. It’s so annoying!
Am I a horrible person?
https://weillcornell.org/breastcenter?utm_source=google&utm_medium=Yext&y_source=1_MzAzNzU4MTYtNzE1LWxvY2F0aW9uLndlYnNpdGU%3D
Now with fresher eyes you are seeing the wider picture.
- That Mom needs more than you or your brother can provide.
- That many barriers to help are due to Mom's attitude & limitations (agoraphobia, anxieties?)
Sometimes it helps to take the unworkable options OUT of future planning. I see these as being out;
- You moving to NY
- Mom moving to your state, into her own place - lacks independance to do so
- Mom moving to your state, into your place - not workable
- FMLA you - self-emp
- FMLA brother - no $
What's left?
Mom will HAVE to accept help by others. Accept help, transportation & recovery care by others. From *Non-Family people*. No choice.
"No man (or woman) is an island" goes the saying.
If she does any sabotage of the care , transportation , cleaning service or whatever you have set up for her . Do not run back to NY. That may be her manipulating you to come to NY. Let the chips fall where they may and she may end up back in the hospital or rehab etc. A cognitive test / psych eval wouldn’t hurt either. Maybe you can arrange that to be done at the hospital while she is there . Keep in contact with case manager , social worker at the hospital .
wow I am so touched by all of the time you spent on helping me figure this out and letting me have a space to vent. It is so appreciated.
I called her cancer center’s Social Worker and was given some information. She is entitled to $500 in rides to and from treatment. It is a plain ole taxi company but the hospital sets it up so it feels more “official” than a Lyft or Uber. Once she runs out of the $500 she can pay out of pocket. But this should get her to and fro for a while.
I need to tell her surgeon that she will need “wound care”. The surgeon if they are cool just needs to write a script and then Medicare will send someone over to deal with that stuff. It the surgeon doesn’t do it SW has a list of private place she can help contact for post surgical care.
I told my Mom both of these things and she grunted.
But! It made me feel a lot better to have the social worker involved. She’s like give us the dates of treatment when it is time and we will set up the rest. Voila!
My Mom called me today going on and on about something, I set a timer for five minutes and then told her I had to hang up.
So much of this experience is about boundaries and being firm.
The cleaning lady is coming for a second time next week. It is attached to my Mom’s credit card so that is taken care of.
I feel like I accomplished a lot today. Baby steps. Thank you again for this support. It means so much to have other folks to lean on during this trying time.
I’ll keep updating when things come up! More venting may follow;)
Is anyone mom's Power of Attorney for finances and/or Healthcare?
Are you and/or brother on HIPAA forms so that you can both impart and receive information from her healthcare providers?
I agree with a previous poster who said that someone needs to be in touch with her surgeon's office. You need to talk to them, not only about the fact that is economically not feasible for you to be mom's caregiver after her surgery, but also the unsanitary condition of her home. Sending someone with open post-surg wounds into the environment you described is a recipe for disaster.
It sounds as though mom has some significant mental health issues. Getting that out in the open with the surgeon's office will be a gateway to better understanding on their part. Don't beat around the bush. "Mom is has social phobia, is agoraphobic, won't take public transit and can't care for her home".
Mom needs "case management services". Hopefully, her doc's office or surgeon has a contact in the local contract agency that covers mom's zip code in Querns. Could be Catholic Cathities, JASA or any of a number of private organizations. Get in touch with them and be the squeaky wheel.
Get started on those phone calls and let us know what you find out.
AND no, you're not a horrible person.
If she moves mom near her it will mean she will become that and more just based on mothers unwillingness to do anything to help herself.
Thats why I don't understand the point in the mother having all these procedures and treatments. Mom refuses to be an adult and extending her life just extends suffering and stress for OP.
OP needs to make it 100% clear she will not be helping her before, during or after surgery. No weekend visits. Nothing. Then mom can decide to get help from another resource or decline all medical procedures.
Call her doctor and her insurance company to see if there might be options.
I think you need to talk to the surgeon and Oncologist and tell them Moms situation. Tell them she has no one to help her after the surgery. You live 3000 miles away and are self-employed. That there will be no one to care for her once she is home. Also, no one to take her back and forth for radiation treatments. Mention her anxiety and agoraphobia. She may go on to Rehab which will give her some healing time. Transportation maybe set up with the surgeons/oncology depts. Medicare may pay for in home care. All this you need to find out before you can make any decisions.
I find there are people who make up things in their heads how they think things should go and when the don't go the way they expected it to go, they lash out. At 73 I know I probably could not expect u to come and care for me so I would need to tell my doctors I have no support system. I am sure your Mom has not done this. She just expects you to jump on a plane and be there. You need to tell her doctors differently.
Think about your mother's situation and try to see yourself in it for a minute. If you had breast cancer and were facing chemo, radiation treatments, and a mastectomy would you be able to make a move across country?
Your mother's doctors here. You would not have to be her hands-on caregiver. The will send homecare aides for that.
Between you and you brother and the FMLA getting your mother to her appointments and even staying with her won't be such a problem.
Everyone here knows what kind of mother I have. She had cancer too and needed treatment. I came back and stayed for a while and she did good. My returning was with the understanding that I will not tolerate any of her common abusive behaviors. That there will be no snideness, instigating, gaslighting, or verbal abuse. If there was she knew that pretty much her only other option would have been a nursing home.
Those months were the only time there was ever mutual respect between the two of us. No gaslighting, no verbal abuse, no bullying. My mother was almost nice. She was ill and needed a lot of help but that wasn't a problem.
I find that when a person becomes a family caregiver and has a lot to do they don't really mind. What they do mind and what ruins the caregiver relationship with a LO is the constant complaining, negativity, misery-spreading, sabotage, gaslighting, instigating, villifying, and verbal abuse. When the LO behaves like an entitled ingrate who expects their adult child be a slave to their every demand.
I was a caregiver by profession for 25 years. So I'm going to let you in on a helpful tip that will save you if you decide to care for your mother.
Need and want are two different things. As a caregiver you give a person what they need. Not what they demand. No one needs to abuse another person. No one needs to enslave someone else no matter how sick or needy they are.
Also remember, that you answer to no one. If you caregive you do it your way and on your terms.
Unfortunately I’m ineligible for FMLA because I am self employed. My brother will not do the FMLA cause in Florida you don’t get paid, you just are guaranteed your job upon return. It’s not possible for him. Also he isn’t too bright and navigating something like this would prove too difficult for him.
I totally agree I wouldn’t mind lending a helping hand here and there but could use some appreciation.
My Mom doesn’t take the local help that is available to her. She doesn’t ask anyone for help. She demands that I uproot my life. She doesn’t want home aides. She’s made that very clear. Want and need are two things, thank you for reminding me of that.
Make the list on what you can do from the West Coast. Call the doctor and explain the situation, they might have programs to help her. Of course you know she will turn them down because you need to be there. Make it very clear that you can't be there. You are self employed which means if you don't work, you don't eat.
Caring for my father I was willing to do things he couldn't do but refused to help with things he couldn't be bothered to do for himself. Your mother doesn't want to take any responsibility for herself yet somehow thinks you should?
This sums it up. It underpins her described behaviour & attitude in many ways.
Strong boundaries are the way to teach responsibility.
Insofar as her "expectations" - well, many, many parents have unreasonable, unrealistic expectations of their kids. Some expect them to go into certain jobs; some expect them to have lots of kids to give them many grandchildren, some expect them to put their lives on hold once they (the parents) reach an age where they need care. But your mom's expectations don't have to be YOUR problem, unless you AGREE to make them so. If mom had expected you to have half a dozen kids so she could have many grandkids, would you have agreed to that? If you had already made the decision to have no children? Do you see the point I'm trying to get to?
Here's what I suggest you do. First, make a list (for yourself) of things you ARE willing to do. Make it today, then set it aside and ruminate on it overnight. Look at it tomorrow and edit it as you see fit. Remember, once you make the offer of what you're willing to do, it will be hard - given your dynamic with your mom - to rescind the offer. THEN once the list is "finalized" tell mom: "I am not going to move in with you to take care of you. I AM willing to HELP you arrange for rides to your appointments; I am willing to HELP you arrange for an aide to come in to help you; I AM willing to HELP you arrange for a housekeeper; etc.
The other thing I might consider doing, were I in your position, is privately make a few phone calls. Call mom's oncology office and explain her situation. That she has no support system, and that you are 3000 miles away and CANNOT be expected to put your life and livelihood on hold to take care of her. You can also try the American Cancer Association for any practical advice they might be able to give. Your mom lives in Queens NY, not in the middle of NoWhere, USA. There ought to be resources available to her that she - and you - can take advantage of. She's not the only senior who has had to face a cancer diagnosis and the resulting treatment with no children around to take care of her. Don't let ANYONE try to convince you otherwise, either!
Good luck to you!!
Everyone has a right to live.
Your mother lives a very isolated life, and she can't do anything by herself. She already isn't taking care of her house. Has any housecleaner ever come? You wrote you've arranged for one to come?
She is going to sit passively by and expect someone else (you!) to do all the arranging for transportation to the hospital for surgery (and maybe before for pre-op appts?), transportation home, and then chemo and radiation. Yes, you would have to uproot your life and stay for months. She plans for you to become her caregiver.
You know what needs to happen. She needs to sell her house. But there are the immediate issues of the surgery and post-op and then chemo and radiation.
I take it she makes all of her own decisions and is deemed mentally competent? That is the typical situation where it is advised to wait for the crisis.
What is your therapist getting at when she says what would happen if you do nothing? What DO you think would happen if you just said no? Would she even get the surgery?
Please keep us updated.
Maybe she is not actually capable of solving some of her daily living problems? Add these new challenges of being ill - beyond her coping skills?
So I'll add.. if SHE can't, then she can't.
Yet this doesn't mean YOU have to.
"... picking something off the floor when she drops it". You meant literally I know. I have a LO like this. Will not do for themselves if family member is within sight. Very dependantly minded. It's a psych thing.
If this is then case, Mom will need to 'own' her situation.
Talk to her medical team. Tell them plain: she lives alone, daughter lives too far, cannot help, she cannot cope. How can they help her?
My LO has gone into care after day surgery. Would need to live in respite care for bigger surgery & chemo. Your Mom may need similar.
She may not believe you, may want only you so will keeping pushing you. But if you can't do it, you can't do it.
Decide what you ARE willing to do & offer that. Eg Make phone calls, talk to Doctors, keep track of appointments.
I also think that Lea gave practical advice. Hire someone that can transport her to and from her appointments.
Just read your response to Fawnby. You are caught between a rock and a hard place. I’m so sorry! This has to be weighing so heavily on your shoulders.
If you didn’t care about her in the least, you wouldn’t be posting.
I understand that she hasn’t been an ideal mom which only complicates things further.
It all keeps me up at night as much as I’m trying to let go and only do what I can…
thank you for your advice and support.
If she's living elsewhere in New York State, tell her to take an Uber and stop being ridiculous.
You'll have to make definitive statements like "you'll have to move" or "we're getting you a driving service/home aides," then make it happen. If she refuses, then you say "I'm sorry, but I've done all I can."
Moving your life is off the table, so that's a non-starter and don't even discuss it.
Stay strong. We can’t turn our lives over to vampires who suck us dry. You’ve done as much as anyone could do.
Surely there’s a social services agency who could take over.
I feel guilty that I am using THIS situation to be firm when there have been many others in the past. I wasn’t healthy in the past and now I am working so hard to be! I’m 44 and am finally understanding that I need to take care of myself.
My therapist asks me what would happen if I did nothing, and I really don’t know if she would figure it out. Like is this the moment to teach her a lesson?
I guess it has to happen for the sake of my sanity and health and my marriage.
M probably doesn’t believe you. It is important to be very firm and very clear. No comments like “we’ll see how things go”. You tell B that’s what is going to happen, and give him the lists as well. If M doesn’t get things organised and you get a desperate phone call (from anyone), you say you are unable to come, and it’s an unsafe discharge. Let the Social Worker at the hospital work it out. Give her a copy of the lists you gave to M and B.
You are NOT a horrible person. M is responsible for herself, like so many other older women who have to cope with this.
I appreciate your response and your confidence in this stranger. I’m going to take your advice and make that list up.
I had asked my B to make ONE phone call to an org of volunteer drivers but he never did it… I guess that’s why I always end up doing it all, otherwise nothing happens…
Thank you again for your time.