New, need advice

donnasdaughter3

I am caring for my mom, who was diagnosed three years ago with stage 2 BC. She had a mastectomy,(11 positive nodes) 12 weeks of chemo and 28 days of radiation. Cancer went in remission and then returned a year later in the tissue surrounding the original site, some lymph nodes and some small spots in the spine. She is triple negative. Since that point she has been on and off chemo, going into complete remission for about two months before the cancer began spreading significantly in the skin around the original site. She has been taking Zoloda and Taxatere and Zometa for the past few months and after the last treatment she became sick enough to need hospitalization. She was in the hospital for five days, violently ill for several days while they attempted to find something to help the illnesses. Two of these days, she lay in the bed sobbing non-stop until a palliative care team was sent in the try to manage her care. She has decided that she will refuse to take Zoloda again as she feels this is the drug that makes her the sickest. In the past six months or so she has lost 25 pounds, become very physically weak, become very dizzy all the time and she falls down quite often. Her driving is very scatter brained, and her memory is terrible. She seems very spaced out sometimes. She is only 57 years old. The change in her personality is also significant. I know she is going through hell and I want to support her in any way i can but I am beginning to question this treatment and wonder if it isn't worse than the disease. She has become frustrated and short tempererd with my "worry" and is looking forward to her next doctor appt. when the doctor can set me straight and explain that all her symptoms are "normal". She will only acknowledge the fact that she is tired, the other changes she will not admit to...she thinks I am making it up. The sleeping pills she is now taking (to cure her chronic insomnia)make her groggy to the point that were a fire to happen in the house, she would never wake up. She lives alone and I am her primary care taker when she is ill. She is fiercely independent, does not have a current will and refuses to discuss any right to life issues or waht she wants if she does get too sick to make her own decisions. I am looking forward to the next doctor appt. because I want to talk about all these things I have listed above but I know it will make her angry if I overstep what she perceives as my "boundries". My mom and I are very close, I love her immensely and I want to keep her healthy and happy on this earth for as long as I can but am so frustrated with her what I perceive as her refusal to ask some of the hard questions and explore all of her options. What to do? Am I correct to think that her decision making abilities have been diminished by the chemo and that she may not be thinking clearly right now about her options? Can I try to think clearly for her? And how to do I tell a bright, intelligent middle aged woman that she is not thinking clearly without making her angry at me?

Help...please. I want to be the best daughter possible.

KariLynn

I don't think you can tell her she's not thinking clearly. You need to get some help dealing eith this - maybe meeting with some hospice workers to see if there are support systems for caregivers.

The drugs that are making your mom not herself may be the same ones that let her live. The side effects do sound pretty normal (chemo is hard and chemo-brain is real.)

The best daughter possible will be available for her mom without trying to take over - she is an adult and should get to have the final word on her care. Trust me, she knows that she may be nearing the end, maybe she doesn't want to spend time worring you about that. Let her have that.

At the same time, you need to take care of yourself. Find someone to help you and be available when you need to take time off - maybe you can get friends lined up to drive your mom to appts or stuff so you don't have to worry about her driving.

I have stage iv cancer and don't have a will. It's not uncommon (just foolish...) to put off doing things like that. Give her space to deal with this and be available, when she is ready to tak about the end of life issues that need to be decided, she will.

I hope your mom improves. Take care.
Kari

donnasdaughter3

The thing that boggles me is that she doesn't think she is "nearing the end", no one has ever said this to her nor discussed in any way what her prognosis is or what she can expect in the future. She doesn't ask these questions so no one has told her. I guess that is on my list to ask, what is happening?

LuAnnH

I am stage IV with mets to the bone, I do have bad days and good days. I am thankful my kids ignore me on my bad days and I try to keep a distance when I am like that. Some people, especially us independent ones hate to ask for help or rely on people. That could be alot of her frustration. It is a big thing for me, I hate having to rely on someone to do something I cannot do.

Does your mom use a computer, maybe you could bookmark a couple of message board sites for her to look at when she feels like it. Reading other peoples experiences and knowing I am not alone in my battle does make a difference in my outlook. It also opens my eyes to things I need to ask or take care of. I also like the fact I do not have to go to a meeting at a specified time. I can jump online 24/7 and someone is always around or there is always a story to read. Just a thought of something to help her.

Just because something made your mom very ill does not mean she is nearing the end of her battle, just means she couldn't tolerate that med. Hospice workers are also a great resource for places to reach out for help. People don't consider them unless you are at end of life but they do have alot of resources that may assist your mom in getting over this hurdle.

LuAnn

jgrjunque

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She doesn't ask these questions so no one has told her. I guess that is on my list to ask, what is happening?

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Remember that she may not ask these questions because she doesn't want to know the answers. People are very different in the way they handle this sort of thing, in the amounts of information they want and need. But realistically, unless she's incompetent, she's the boss. It's her body, her life... and she has to make the calls no matter how hard that is for those who love her to take.

Believe me... I know how hard this is... my own mother didn't want to know ANYTHING when she was diagnosed. Nothing at all. It made it very hard for her children. But in the end it was what was right for her.

Canadria

I know what you are going through. I have am going through this right now. my mom did get a will and a power of attorney for me when I need it. However, she has made it clear to her dr that until she cannot make the decisions she needs to make, no information about her condition is to be given out. Not fair,I don't know it. But this is her life.

here is what I have experienced, with telling a mother to do something. They don't listen, it only makes them get on the defensive more. At least that has been my experience. If she doesn't want to tell you what is going on, don't push it. if she says she is ok, but you know different...she is ok. My mother tells me everyday when I call her, she is fine if only she could get her breathing problem under control. It's not a breathing problem, she is dying. she has fouth stage breast cancer and is the palliative unit. She knows she has cancer, she knows the outcome. She is hopeful that a miracle might just happen. Her spirits are high. I cannot take that away from her. Because I know that is what is keeping her going. Its a situation that is not easy to do. And I can tell you my repsonse would have been different about 6 hours ago, but I finally see the light.

She sounds like a very independant woman, who is use to having control any situation. My mother is that. and I didn't realize until today that by me not intentionally mind you, but questioning about what the dr's said at her visit, asking what type of meds she is on, asking to speak to the dr. If she allows this, she has lost control, and if she has lost control, it is like giving up. It's overwhelming to them. It's overwhelming to us as well. But in all honesty we have to take a step back.

Granted you situation is a little differnt. My mom is in the hosptial. You mom is living on her own. You have to find a common ground where neither one of you will get upset and emotional about the situation. Very hard to do. But it can be achieved. with my mom I have found it has to be her Idea. if it's not her idea or her way....it's not going to fly. We would sit and talk in the hospital and just have a generatal converation. my mom was going to put someone on the list to sign for her incase she had to have emergency surgery. the person she named, i was not happy about. I just said, I would ask that you think about it one more day. The person had created some troubles for my mom before she got sick. Based on what you know is going on, are you going to be happy with that decision. Whoever you want to sign for you is completely up to you (it was a person locally incase I was not able to be reached) I want you to consider what you know about this person, what she has done, are you fully confident she will do what is right and what you want. We moved on to another conversation bit, we had a great visit. When i went to visit her the next day, she said "I considered a lot of what you said, and I was thinking about it after you left, and I thought out it some more after I woke up. I decided that so and so will sign for me if you cannot be here. I just asked, are you comfortable with your descision. she said yes. I may have suggested it, but I put the ball in her court.

Important documnets are very important. I am so glad my mom got all of that done. However, many people do not think it's going to happen. Regardless if they are sick or not. I am healthy as a horse, and I don't have a will. However, going standing on the sidelines and seeing what I am seeing. I have noticed little things, red tape, etc, that I plan to put into my will. For instance, I am going to document that who ever is my power of attorney when I am not allowed to make my descisions will be able to discuss my condition with my doctors etc, without my presence. The power of attorney maybe when I am incapable of speaking my wishes. But in order for my POA to make the best decisions on my behave, they need to be in the loop. I am mom's POA, however, it is only when she becomes unable to make her own descisions about her treatment etc. And she is not telling me anything and not allowing me to speak to the drs.

I am not saying this is easy. my situation is not the same as yours. It's going to cause sleepless nights for you. It has for me.

As hard as it is, you cannot let her see you are worried. I learned the hard way. If she sees you are worried, she is going to feel like a burden. At least that is what my mother felt like. She felt that she was the cause of me missing two weeks worth of work. I had to make up 4 weeks of college classes in one week. My children didn't have a mom for two weeks. She felt she caused that. She is blaming her self for her cancer. So I left. I didn't want to. It was the hardest thing for me to do. I call her every day. But she has enough on her mind, with what she is battling with. She is looking death in the eye. As she said "death is knocking on the door, but I have my feet braced up against it."

My husband said something to me tonight (I hate it when he is right) he said I am not trying to sound cold hearted, but your mom is dealing with this the only way she can. It is what is keeping her alive. It may not be right how she is doing it, but it is her way. She is a big girl. And you have to deal with it the best way that you can. Neither situation is easy. You may be able to talk about it openly, but you're not the one dying. Everyone deals with what life throws at them differently. And they deal with it the best way they know how.

As far as the boundaries. Here's how I look at it. Do you remember your first day of school. I look at the boundares like what happened on my first day of school I didn't want the kids to see my mom waiting with me for the school bus. She walked away and stood behind the 50 year old Pine tree at the end of our lane way without my knowledge. I know it's a little different, than the situation at hand, but my mom wanted to make sure I got on that bus. She was more nervous about my first day of school than I was. I am standing behind that Pine Tree for her today. She may not know I am watching, but I can quickly duck out from behind that Pine Tree, if she needs me. Standing behind that Pine Tree when I was little, she could see all. If a car was coming down the highway, and she wasn't sure it would stop for the bus lights. She could still catch. If I feel on the road, she could quickly scoop me up.

i am not sure if any of this helps for you. I hope it does in some way. You have to look at the whole picture, without emotion, and maybe even put yourself outside of the situation. my mom is confused, she can't remember a lot of things. She is tired, she is weak, she can't breath, it's from the chemo, the meds, everything. That doesn't mean she can't still make her own decisions. It's hard to know when to step in. Like they gave us nothing but the best in love and support, we want to do the same thing.

Anyway I wish you the best. I know what you are going through.

Canadria

Canadria

Sorry there are so many typos in the post. It's 2:25 am and I am too tired to change them. Hope you can read it ok with the errors

ninjr

You already have some good suggestions and advise. Here are my two cents worth....with your mom being fiercely independent; she does not perceive herself as not thinking clearly, is at the center and subject of the issue. If she gives up control, she's giving in. Giving in & discussing right to life issues or a will could mean to her that she's giving up. A hospice councelor can help you with resources for yourself now & your mom when the time comes.

Glad to hear that your mom is at least allowing you to go with her to the doctor's appointments. You are able to hear prognosis & treatment plans directly from the Doc. My sister & I were not that fortunate. When our dad was diagnosed with cancer, mom would not even allow us to see a copy of path reports, chemo treatment plans, etc. She shared bits & pieces of her own interpretations of actual medical facts & terms. Do you know how hard it was trying to piece that jigsaw puzzle together? We knew that there were different, better options out there for dad but could not help because mom had power of attorney & said she was protecting us & herself from reality.
In the end, everyone, but my mother acknowledged that hospice was needed. She had to be TOLD, not asked by dad's doc that hospice would be calling and coming out. The hospice counselor wan an absolute angel & THE neutral third party needed to get through to mom (somewhat). Dad passed away this past June peacefully and comfortably at home.The day he passed, mom could not believe it, he was just sleeping, not gone. It took 10 hours of drama to convince her to allow us to touch the phone to call hospice for confirmation. That in itself and the hours thereafter is another whole saga. Thank God for all the wonderful hospice workers.

Remeber to take time out to care for yourself, utelize a neutral third party and just be there for her.

Sending you hugs, Ninnette