Scared for my Mom, stage 4?!!

Hi everyone, I have written here before but it has been a while. I found out from one of my sisters that my mother has stage 4 cancer. My other sister who is my mother's " caregiver" again withheld this information from me because of on going animosity. Long story short my mother took care of her and her two kids for 15 years out of guilt as my sister claimed to be suffering from chronic pain. fast forward to a couple years ago my mother developed breast cancer due to not following up on an abnormal mammogram a year prior. She put off her surgery to again take care of issues my sister could have taken care of, but would not until the tumor bled through her skin and she had to be taken to the hospital, and had both breasts removed and chemo treatments. My sister failed to inform all of us siblings except for one that our mother had breast cancer. My mother did not want us to know either because she knew we would talk her out of continuing to take care of my sister whom she believed was dying of stiff persons syndrome. I live 4 hours away and my sister controls my mother emotionally, my brother who us homeless found out by accident and finally told me and my other sister.
a year later my mother was diagnosed with dementia. so now the roles are reversed and my sister SUDDENLY is cured of all her ailments and is now my mothers caregiver and has power of attorney over my mother. SHe lives with her in a rented house with her tow daughters, my nieces. My mother has been in good health since her breasts were removed and had treatment. I just found out that my mother went to the hospital in october, which again my sister did not tell anyone about, and while she was there, they noticed a swollen lymph nodes under her arm and ran tests. The oncologist told my sister that she has cancer of the lymphatic system and he can not do treatment as there is no tumor so therefore they would not know where to treat the cancer. Furthermore, he said that to do chemo and radiation, would be detrimental to my mothers dementia and health, she is 79 yrs old. And he said her quality of life would be poor. So it sounds like they are talking about a dog here, I am so confused! So basically he said to do a "watch and wait " plan and to watch for any symptoms.

Does this sound right???!

What is even more disturbing is my sister told me her next appointment with the oncologist is in July! That is a little far off for this type of diagnosis??! My sister says its because my mother is on medicade and they give all the attention to the people with money first. There is no money in the family at all. My sister is on disability, I work two jobs just to afford an apartment and make ends meet, my brother is homeless and my other sister works two jobs as well to afford her place. We lost our family home when i was 16 and everything in it.

I am so unsettled about this. I do not understand how cancer of this type works and if this is a common thing that doctors do is to NOT treat it immediately?!

I only know what my sister is telling me. SHe told me all of this yesterday and i have been thinking and thinking and feeling very uncomfortable with everything I heard. I talked with my other sister and she feels the same as me. She wants a second opinion and i agree, but my sister that takes care of my mother is worried about dragging my mother around to a second opinion will put her at risk for Covid. She wants all of our thoughts and I told her that i would want my mother to get treatment as i am a believer that you do all you can until you cant anymore. I feel like my sister is just letting months go by without being proactive about this meanwhile the cancer is in her body. she took the Dr.'s plan to watch and wait and apparently is ok with it. me and my other sister are not.

I am going to contact her oncologist to hopefully hear it all from him. I hope he will talk to me because i tries this when my mother had the breast cancer and the doctors would not tell me anything about my mother because of the HIPPA and i am not her caregiver.

If you have any thoughts or experience with this i would so much appreciate your feedback. Going crazy with worry here.

Thank you!

Thank you Straydog,

We are trying to have my sister get a second opinion. We are asking her for my mother’s insurance carrier to try to get her into a cancer hospital, however my sister is not being very proactive.

I thank you for your story of your Mother, it does help me out things into perspective a lot. And I am so sorry about your mother.

I am on good terms with my sister and plan to keep it that way. I wanted to visit my Mother this weekend but my sister does not want me to visit due to the Covid risk. She does not want me to visit. She said I could zoom meet over the phone with my mother. I am not happy about this , but I am afraid I argue I will get cut off again.

Thank you Straydog. My Mothe does has social security and medicare, however to do the second opinion we need to know my Mothers medicare carrier and my sister is saying she lost that information and is waiting to get the information through social security which is going to take time. Half the stuff she says I do not believe, but my hands are tied as I have no way of finding any of this out. I called my Mother's Oncologist office, and they would not tell me anything. Her nurse told me either my Mother has to consent that I can discuss her medical information, which she is not of sound mind, or a power of attorney, and she told me my sister only has Guardianship, not power of attorney. So my sister lied to us when she said she has power of attorney.

So unless I have power of attorney, my hands are tied to do anything. furthermore, i am not able to obtain power of attorney because I am not capable of taking care of my Mother in the way someone with power of attorney does. I work two jobs just to make it on my own, and I live pay check to pay check on top of living 4 hours away.

this pains me and I feel tremendous guilt over it. Even though I know my Mother chose to take care of my sister years ago and forgo her own life and happiness, I still feel guilt over her choices. I have since I was a little girl when my father was drinking and abusive. I can barely even accept my Mother's diagnosis, and I can not even be there or have the means to take care of her. All I feel I can do at this point is pray to God.

I am so sorry to hear about your parents Straydog, that had to have been devastating.

Nothing ever prepares you for this no matter how much you know eventually we will loose someone.

I am video calling my Mother,of course that is when my sister picks up the phone, and she looks great and is happy and chipper. It is still very hard for me accept.

Thank you for all of your advice and thoughts.

Fearbug, your sister is not being honest with you about the insurance situation. If your mother has regular Medicare she has a card with her info on that has to be shown at every dr visit & hospital before she is seen. If she has a Medicare advantage plan it's the same way. There is no waiting on paperwork to come in to see who the insurance is with. I've had Medicare for 15 years & not once have I been turned away & my medical bills are paid. There are some drs that do not accept Medicare, however, when a referral is made the drs offices always verify they accept Medicare.

Your sister told you initially the dr said he did not recommend chemo because your mother's quality of life would be greatly dimished & it would make her dementia worse. This I do understand.

There really isn't anything you can do because your sister has the POA. Some how you are going to have to keep the line of communication open in order to talk to your mom. You can't blow up on your sister, however, I do think she is playing a sick game with everyone involved.

After all this time since I last posted my sister is still saying she didn’t get my Mother’s social security info in the mail. I told her to call the dr office and ask them for it and she talks me in circles.
It’s my belief at this point, that she doesn’t intend to get a second opinion for my Mother and is just coming up with excuses week after week. She will only talk to me once a week on the weekend. Make a bunch of promises of things she will accomplish for my Mother for the week ahead , then when the weekend rolls around and I call her, it’s the same story, nothing gets accomplished and a bunch of excuses. I don’t know what to do at this point. I could fight for guardianship, but I can not physically take care of my mother as I work two jobs just to survive. My sister gets money from the state as well as my mother’s social security, disability for her self and as money for each of her daughters and she is home all day. Plus it would devastate my Mother to be ripped away from my sister.
I’m so lost. I feel so much guilt that I can’t help my Mother. And I can’t stomach losing her like this. My sister keeps making excuses on why my mother hasn’t received her Covid shot yet.she said she is waiting on the approval from her oncologist. And she doesn’t want me to visit my Mother until she gets the shot. She said they won’t get back to her for three weeks now. How is this possible? I actually called them myself today and the nurse was very abrupt and said to me that I’m not on the list of people who can get information on my Mother, so the call stops here. But she did tell me she would call my sister. This is just absolutely sickening. I am ill over this.

You are right. I really was hoping this time around she was doing the right thing and being truthful. I didn’t want to believe it. This has been going on with her far too long and it is draining.

I do zoom calls with my Mom. She is so happy to talk to me and she is so cheerful, and it is the only comforting thing about this whole situation, because everything else about the situation is just devastating.
You are right to not push it with her, as I do not want to get cut off again. She has already slandered my other sister and I to the town cops where they live when we have called countless times to do wellness checks. Apparently she has them so fooled on the kind of person she really is.
All I care about is my Mother. But I do know now, that the harder I push, the more my sister withdrawals. I can’t afford for that to happen now.

She did know I was calling the doctors office. I told her I would. She didn’t seem to have a problem with it. But when I texted her to ask if they called her after I spoke to them, she never responded. So at this point I have only to believe, she either is lying and my Mother already had the Covid shot and she doesn’t want me to know that, or she is not wanting to get it because it’s clear to me she does not want me visiting. Either way she is lying and it kills me that I can’t see my Mother.
Thank you Straydog for your thoughts on this. It helps to get another perspective on it, as I can drive myself crazy obsessing over it. I do need to seek counseling for myself in dealing with this, I do plan to do that.

Thank you for letting me vent

I'm so sorry for your situation. I would contact an Elder Care attorney, he can help navigate you through your situation. If your mother refuses to see you, there's probably nothing that you can do. You can have medical POA, you can do consultations and doctor's visits online now. The attorney can at least petition for you to have contact with her doctors.

Sharon

Post Edited (SharonZ) : 6/17/2021 5:05:07 AM (GMT-6)

FearBug, so sorry to read about how this has turned out. You mentioned a couple of months ago of getting some talk therapy, do it! You owe it to yourself & your daughter, whether you realize it or not this is affecting your daughter too. She knows that you are upset. You have done the best you can so let go of any guilt you may be feeling this is out of your control. Remember we can only control ourselves & no one else.

Take comfort in knowing hospice is involved, they can be a blessing for a family. If hospice were to find your mother in horrible shape they would notify the appropriate people. Try to take comfort that your 16 year old niece is helping your mom too. While it may not be perfect at least she is doing something for her grandmother.

I am a firm believer in what goes around comes around, karma has a way of catching up.

This is hard, as My Mother's Birthday is August 15th. I want to go visit her, and I don't think my sister will let me in. She usually sleeps during the day and one of my nieces will let me in, but they will adhere to what my sister tells them and not let me in. I have stood outside banging on the door one time for 30 minutes before being let in by my niece. Its about a 4 hour drive, so I try to give it my all to be let in.
If I am let in, I do not know what condition my Mother is in. I don't know what to expect. My sister has been very wishy washy from the beginning with my Mother's exact diagnosis. She led me on week after week telling me she would screen shot the paper work with My Mother's diagnosis, and had one excuse after the other, like the Dr. office didn't send it to her. The next week she would tell me that she called them to ask them to email the diagnosis to her, and no one at the Dr. office would answer. I tried calling the Dr. and they will not give me any information at all.
So I am very apprehensive about seeing my Mother next weekend. Scared what shape she is in. Don't know what to bring her for her birthday. Flowers and a cake I always bring...

This is heartbreaking and weighing very heavy on my heart.

Sorry, just venting
thanks for listening

Thank you Straydog,

I called and texted and she will not answer or respond. I think I will feel better to at least go. I will not bang on the door like in the past. But just knowing that I made the effort for my Mother will make me feel better. I definitely do not have any intentions of saying anything to my sister or criticizing her. Last time on Mother’s Day I had just gotten so upset at the condition I saw my mother in. But I know better now. All I cate about is my Mother being ok and comfortable.
Thank you again so much for your feedback. It helps to get another perspective on things especially when you feel like you are full of anxiety and stress over it all. Thank you <3
❤️❤️

FearBug, I can't tell by your post whether you made the trip to see your mom, did you go?

Please try to remember this, you cannot control anything that is out of your control, look up the serenity prayer if you are not familiar with it, it can be quite consoling.

From what I understand the drs already said your mom is not strong enough for chemo. Even if your sister had pushed for chemo, a dr has to be willing to give that treatment, it was not your sister's choice to make. Chemo can be horrible for someone in good shape. There are many types of chemo used for various forms of cancer & please try to understand this. I've told you about some of my mother's friends that did chemo & how horrible it was & they passed away in spite of chemo. Their families were sorry they pushed so hard for chemo when they saw how ill & how much they suffered.

Be assured that hospice keeps track of how much morphine your mother is getting, state laws require this. If your mother was being too much hospice would take action. I know you have so much distrust, considering the shape she is in you don't want her to suffer. Uncontrolled cancer pain is inhumane & barbaric, no one should ever be in that situation.

Try to do an internet search in your area for a low cost psychologist in your area. Odds are pretty good you can find one that offers low cost for people paying cash.

Keep both of your jobs, you need to earn a living for yourself & your daughter. Your daughter relies on you for everything. I will keep you & your mom in my prayers.