Struggling with decision of what next step is for my mom :(
Hi all,
My mom was diagnosed in Feb '15 with stage IV w/ mets to SEVERAL lymph nodes throughout her body and to her pelvic bone. She did six rounds of taxol along with herceptin/perjeta. Pet scan after being on taxol showed good response and many of the nodes looked clear with just some residual signs left in a few areas, but it looked so much better. She then continued on herceptin/perjeta/zometa combo and had PET scan in November that showed dramatic progression of the disease and a new met to the liver. Also, before this PET scan, she began to experience short term memory loss- so she had a MRI and it was found that she had 6-7 DOZEN lesions in her brain. It was all over. So she completed 10 rounds of WBR in Septemeber. Follow up MRI in Nov showed that number of lesions were reduced but still many present with the biggest one measuring 2 cm. So after getting the news that the H&C combo wasn't working in Nov, she started Kadcyla in December. We were monitoring her TM's and they were steadily increasing while on this treatment. She had PET scan done last week and the news is not good- more progression of the disease. Within the last few weeks- her memory function has declined drastically and her appetitie is poor and basically my mom has no joy in her life. I moved her in with my family so that I could help take care of her since she was living alone, and she is so sad and so depressed every day. She is crying all the time and she is so scared about what is happening. I have been trying to see if there are other options for her, but I just don't know that anything will work. She has no joy in her life. No matter what I try to do for her, there is nothing that makes her happy. I'm just not sure that she has much of a quality of life anymore. Her onc has left the decision up to us whether we want to try chemo again or maybe Fasidex?? but I think more to make my mom feel like she is still doing something and not giving up- but to put her through more chemo just doesn't seem right and the Fasidex will have no effect on what is happening in her brain, much less her body. So, I feel that it may be time to move her to hospice care, but it is such a hard decision to make. I am trying to talk to my mom about her feelings, but she isn't processing things very well anymore and I don't think she is able to make this decision. We talk about the Fasidex and she says "why, it won't work anyway" but then we talk about hospice and she cries. This is one of the hardest things I have had to go through. My mom is only 64 years old. 
Comments
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Luv4mymom- please know you and your family are in my thoughts and prayers..such a difficult decision. However, the hospice here is wonderful...they are able to get the patient comfortable, provide support for the family and tease out what is important. You know, some folks get better and work their way back out of hospice. Just thinking it may be time to get more structured help for yoru mom and you.
What are you thinking now? So hard when you are making decisions for your parent....but, you love her and know if she could make the decisions whe would. Please keep us posted. Hugs!
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so sorry you and your family are faced with this. I agree that you need help. My friend her family had amazing help in hospice including psychological help and anxiety medications. The staff are trained to handle anything that may come up. Best wishes to you with this struggle
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Thank you HappyHammer for your response. I am thinking that we need to meet with hospice and see what we can do to try to make sure she is as comfortable as can be. I have a call out for her onc to ask a few questions but I think this is the way we will go and although I want to be hopeful that she could improve and get out of hospice- this whole journey has been a series of let downs and dissapointments. I will post updates as they come. It helps to be able to "talk" this out on here.
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My heart goes out to you. What a difficult journey you are traveling. I am not sure what the right answer is, but know my thoughts and payers are with you. I am praying for her to become more comfortable in this journey.
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luv, sorry for what your mom is dealing with, I know it is hard on you, too. Please consult with hospice. Even tho initially you may dread making the call, I think once you open that avenue of support for your mom and you, it will come as a relief. It is hard to accept. Things seem to move too slowly, things seem to move too fast. Your mom's health and her response or lack thereof to treatment is not in your control. It is okay if she chooses no further treatment. People sometimes think everyone must courageously fight an illness endlessly like its some badge of honor and it's the American way or something. It is okay to look at all options here and chose the ones that give quality and comfort of life. Best wishes to you both as you figure things out. Know that your mom is blessed to have such a caring daughter to help her in her time of greatest need. Not everyone has that and it really is a blessing. -
Thank you all so much for your kind words of support. I am very much not wanting to see my mom suffer any more than she has to. I support starting hospice but for some reason making that final decision is so difficult....it's like I am agreeing to say goodbye to my mom...which I am not ready for or will ever be...but I think this truly is the best for her. I guess I struggle with feeling like I need to keep trying for her to see of there is something else that could work...bit the reality is deep in my heart...there probably isn't. Her cancer is so aggressive...nothing is working.:(
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Luv..... I remember being where you are a little over a year ago. And I remember looking for answers about how things would be or were supposed to be. The truth is every journey is different. Some ladies respond to chemo and treatments positively while others just do not. My mom was one of those people .. and in the end-- the chemo was making her so sick.. and so miserable... without appreciable result. So she decided to just stop and let life takes its course. We wanted her to fight..and trust me ... we had many heated arguments over it. It was her decision and I think it was the right one for her, no matter how painful to us.
If your mom is afraid I think you should definitely get Hospice. First off, it is so comforting to have them there to call on anytime of the night if you have questions. They are not always immediately accessible, but most of the time you will get a call back within an hour or so. Secondly, the equipment they offer makes life so much easier. The medications as well.. because they calm down anxiety and discomfort. Most importantly-- they will talk to your mom and give her information about what is happening to her. There is no burying your head in the sand with Hospice. They are very direct. Truthfully it is what is needed. It's not giving up -- it's getting help. I did a little diary about my Mom under the Hospice Care topic if you want to read it. Maybe it will give you insight into Hospice.
As for you-- stay on this board-- it will give you comfort. Strangely we are seeking comfort from those that are going through this or have been through this. It's the darndest thing. But graciousness abounds on this board. The Divine Mrs M is a perfect example of someone who always encourages and is there for you on this board. She is a constant source of comfort for me and I have no idea who she is -- except she must be an angel. I still come here. And I hope I can give something back. I am praying for you and your family.
Dawn
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luv4mymom... First let me say you sound like an amazing daughter and your mom is very lucky to have you. I'm sorry your family is going through this. I would just like to say that Hospice is a wonderful organization that will give you and your mom incredible support. IMO you should just give them a call to discuss your situation. It doesn't mean you are giving up. Good luck and keep us posted
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luv4mymom, love takes so many forms - your mother cared for you when you couldn't care for yourself. Now it is time for you to care for her and for yourself by engaging outside help.
I agree with others, call in hospice.
I've been under hospice care since early November and my life is so much better because I have medical, spiritual and social supports at home. I'm not going it alone. Because I don't have a partner or offspring, my friends and family are helping me live into a death I want for me. I do have mental clarity now. If I didn't, I trust my human helpers to decide my next best steps for/with me.
One thing others didn't mention is exploring the different hospices in your region. I went with the non-profit hospice that offers more services and options than the for-profit agencies. And I got to keep the palliative care doctor I've been with for five years. Established relationships are important to me.
luv4mymom, your mom and you are so blessed to have one another and of course her suffering and likely coming death from breast cancer are going to rip your hearts apart. There is no shame in that, it's tender expression of your deep love.
Remember, your mom isn't just facing an end of treatment possibilities, but the loss of all she holds dear, including you and all her loved ones. There is a lot to cry about! Hospice knows this and can help with your grief as well as the practical aspects of comforting care.
You needn't go this on your own.
btw, there's a topic/thread on death and dying here that might interest you.https://community.breastcancer.org/forum/8/topics/770023
Holding you in loving, healing light during this challenging time, Stephanie
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luv4mymom
You and your family are in my thoughts. Two weeks ago my mother entered hospice due to multiple illnesses including dementia. She is 86 and had been very ill for 5 years, but this is still such a difficult time for me and my family. I hope you have others to lean on. I am sending you thoughts of peace.
Mary
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Luv, my heart goes out to you and your family. I know how hard it can be to see someone you love go through so much. My brother is struggling with stage IV breast cancer. According to pet scan its only in his bones. I have been thinking that he should get a brain scan but I don't want to scare him. His doctor hasn't mentioned the need for a brain scan. He just started a new treatment after the last 3 didn't work as expected. He is always sad and feels helpless. We have to help him get up and get around the house because he gets so weak sometimes. Now lately he has been getting fevers and not eating as much as he used to it. It breaks my heart to see him like this and my poor mom is a mess. I pray that the Doxil will work for him. His doctor doesn't think there is anything life threatening going on and is sort of optimistic about treatment options. He has only had one good day the past two weeks. He is only 49 years old. He wants to get better, he wants to fight, but he's tired. Mentally and physically. Honestly I'm scared about the future for him. I even hid my own diagnosis from him until after I did surgery. I wanted him to focus on his own health and not worry about me. Please take care of yourself and I hope you find the right path for your mom.
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Thank you all so much for your responses to me. This has been a very difficult week. I am seeing so much change in my mom's brain. She is forgetting the names of things, the names of people, she is more confused when she is talking. Sigh...it's so hard. I have been trying to reach her onc so we can get her started with hospice (I think I need to have the doctor be the one to start this process, but honestly I'm not sure), but so far she hasn't called me back. I keep second guessing myself, if I did enough for her, this is truly so hard. I am a mom of two very busy girls- 10 and 13, I work as a nurse, I have been driving her everywhere since August when the brain mets was found, moved her in with us in Sept, have been trying to sell her condo and then dealing with termites and the damage they caused before we could sell, helping her with her job and taking care of her leave with them, and then finding out that they were letting her go and she was going to be losing her medical benefits and having to figure out what we were going to do next....it's all so overwhelming. I know I am not alone, so many have many struggles and at the end of the day, she is the one who has to suffer with this- I hate this disease and what it does.
Thank you all again so much for your supportive words and encouragement. I appreciate it so very much.
Kim
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luv, please, please know that you have done enough. At this time, you must treat yourself with tender loving self care. Last year, my husband and I moved his mom from her house where she'd lived 67 years to an apt. across the street from us, then got her house ready to sell. Hubby's sister helped. It was a Headache for six months! And we are empty nesters, no kids at home, I don't work, and my mil isn't ill like your mom. So please, you are doing even more than enough, you are going above and beyond.
At the end of every day, instead of thinking about what you didn't get done, go over in your mind all you did accomplish. Even opening your mail, your mom's mail, paying bills, feeding the pets, getting things at the store for your daughters' school projects, making phone calls and gathering info to help your mom out. It all adds up. you are doing quite a lot.
If it all gets to be too much, see if you can get an extra day off here or there from work for some extra down time or to get caught up on a few things. Keeping you lifted in prayer.
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Luv, this is a hugely challenging time for anyone - to witness a loved one's decline and dying. I can only imagine what it's like to do it with all your other responsibilities. And I hope you are able to take good enough care of yourself that you don't falter.
Mrs. Divine is always so "right on" with her advice.
Luv, do you use FMLA and personal sick time for needed time off to care for your mother?
Please be kind with yourself - there are no "right answers" now beyond love and kindness.
loving kindness for you! ~ Stephanie
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The DivineMrsM and Longtermsurvivor- THANK YOU!!!! I just feel so much guilt right now. She said to me yesterday, "you are so busy with everything you have going on with the girls- you didn't have time to take me to Cancer Treatment Center of America to see if they could do something for me", so now I am feeling like I didn't do enough to help her. I feel like her treatment course seemed to be on track with how her cancer is treated. Her onc took her case to a tumor board and they all agreed with the course of treatment- but maybe I needed to do more. I just didn't know how I could do it all. This is just a difficult time because of her personality changes, she has been very hard on my oldest daughter- constantly criticizing her because she is a outgoing girl, teenager with teenage attitude, she was never like that before- I know its the disease, but I struggle with not letting it get to me sometimes. I just know I need more help.
The DivineMrsM- we have been trying to sell her condo since September and still haven't closed it- supposed to close March 18th!!! It has been such a nightmare!!
Longtermsurivor- I work part time, so I don't work enough hours to qualify for FMLA and have used quite a bit of sick time to be off with her for various reasons. I am planning to take a stress leave but can only take a total of 6 months- so I am trying to figure out when the best time to take it will be, but I do feel like it is getting closer. I have a some classes I am supposed to do in March and was going to try to get through those, but I feel like I may only be able to hold out another week or so- she is just changing so much by the day.
Again- thank you for your responses- it helps!
Kim
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Hi dear Kim luv,
You are in a pickle and I want to affirm that brain changes so often lead to personality changes.
My mother had a dementia that affected her speech, emotions, empathy, inhibition, ability to plan, use equipment, tell time and see. While it was absolutely heart-rending to watch a brilliant woman become so childlike, there was also a relaxation, sweetness and trust in that last period that gave us all a break from the critical mom we knew. Plus, we finally got to do for her what she couldn't do for herself.
Also, I so get the flip-flop of "there's nothing more to be done" and "surely there's something more to be done."
I've heard those CTCA tv ads are very persuasive (don't watch tv, so don't know for certain).
I still flip-flop and am willingly on hospice after a long lead-in period (was first eligible 4 years ago).
It's challenging to be with someone who's literally losing herself because of brain change, I hope that you too will find some silver linings in those storm clouds.
Also, my mother's last days on hospice were our tenderest, most intimate moments of connection in this lifetime. I felt like she finally really allowed me to love her without any fending or defending. It was pure love, unanticipated and miraculous. Kim luv, keep your eyes open for opportunities during this period of great change.
And please take good care of your precious self while you're taking good care of your precious loved ones.
warm hug, Stephanie
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KIM!
I was so happy and so sad to read your post at the same time. I am going through the same thing right now with my 65 year-old mom. It is so hard. So hard. And I am sending you tons of love and support. Feel free to PM me any time if you want to talk.
My mom has gone downhill fast in the past 2 weeks. I am lucky if she eats an orange a day. She will drink water, Coke, a few sips of coffee or a milkshake but that's it. She is so weak. I have to lift her under her armpits to help her stand and then she takes a few mini steps before getting tired and needing to rest. She has no energy to shower, so I am bathing her and getting the shower shampoo caps. Her memory function is decreasing and I think she is delirious at times. It sucks. She is my best friend. She lives with her brother and 2 of my aunts are nearby to help take care of her. I live about 30 minutes away, have a son with diabetes, and work full time, but this is the hardest thing I've ever gone through. I can so relate to your story.
We had hospice come in yesterday to talk. The trouble is, in her mind my mom still doesn't see herself as a candidate for hospice and, frankly, she was untruthful with her answers to them about how bad she really is. If she went into hospice, I think they could so help us, but I understand that she is scared to make that transition. In the meantime, though, I am terrified that she is going to fall down the stairs (she still insists on keeping her bedroom upstairs) and really hurt herself. More than anything she doesn't want to go into the hospital, but if she breaks a bone, she is going to need to go.
Sorry, didn't mean to ramble or take the focus away, just wanted to let you know that you are not alone. If you want to talk, PM me!
Jen
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I guess even when parents are seriously ill, they still can sometimes play the guilt trip card. Regarding CTCA, it sounds like your mom is twisting the truth; it's not that you didn't have time to take her there, it is that you believe she is getting very good care where she is at. You must tell her that.Even tho you feel badly for what your mom is going thru, don't allow her to lay blame on you for her circumstances.
There have been numerous discussions on these boards about CTCA and from what I gather, they are very selective, which is one reason for their good outcomes, and they also don't really offer anything better than other cancer centers, other than coordinate care and add some complementary type treatments. The medicines are all the same, it's not like they have better or magical medicine. Some people are very happy with them, but there are many places besides CTCA where you can get good quality health care.
You do want to protect your daughter from your mom's put downs. Try to steer away from any conversation about your daughter, and limit their interaction if it is detrimental to your daughter. Sometimes, that's just how it goes. I feel your priorities are as a mother first to your children and then as a daughter to your mom. Just because your mom is seriously ill doesn't mean she is allowed to manipulate you.
What is the latest on the hospice situation? That is where you will get some much needed help.
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Jen~ I am so sorry you are going through this also with your mom. Watching someone you love go through this is so difficult. My mom has been like that also, having a difficult time accepting hospice and saying it felt like it means she is giving up and not trying anymore. Making the transition to allow hospice come in is so hard. I will PM you- it may help to have someone to share the struggles with. You are fortunate that you have family to help you with this. Much of what I am going through with my mom, all falls onto me. I was on the phone with my brother today telling him he needs to come help me more- it is just getting to be so hard.
The DivineMrsM~ I called into the onc office again this morning and started crying on the phone that I was so frustrated that the doctor hadn't called me and that I am needing help and I just need her to call me back. I got a call back within 10 minutes from the doctor. She has placed the order for hospice to get initiated and we have a hospice nurse coming out to tomorrow. Part of me is so nervous to start this process, while the other part of me is somewhat relieved to start it. I agree, I do want to protect my daughter. Right now, she is feeling like she can't do anything right for her grandma. I'm so hoping that hospice is going to be able to help my whole family with this process.
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Jen, I am sorry for what you, too, are going thru with your mom. It is heartbreaking what both you and luv are dealing with, what both of your moms are dealing with.
I am hopeful that hospice is helpful for both of your families. It's been years, (1998) but we had hospice for my dad who had leukemia and the people who worked in our hospice were a Godsend. I really hadn't met such caring people before. My dad passed at home and they made it bearable for him, for us. Different aides came to help my dad get washed, helped him brush his teeth, changed bed sheets, a social worker came and a nurse. My dad liked the activity and energy they brought to the house. It was all nicely coordinated. And helpful. And they aren't scary people. The idea of hospice is scary, sure, but the activation of it is not, It was calming to have their support.
Luv, I am glad you contacted your brother. You may need to ask for specific things rather than say "I need your help". Sometimes men need that because they don't really see everything that needs done. Say it with love of course, but ask him to grocery shop, sit with your mom, pick up prescriptions, whatever specific thing that will help you out. I am also glad you got the doctor's attention, sorry thatyou were brought to tears first.
Many hugs to both you ladies.
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Thank you Luv and Mrs. M. Sending love and strength to you both, too.
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Good morning, dear Kim luv, thinking of your family and holding you in loving, healing light as you enter home hospice care.
Remember, if need be or your mother improves, you can take a break from hospice and go back to active cancer treatment. My local, nonprofit hospice even allows me to have IV infusions of my cancer medication (Iscador) and an rx of the anti-cancer drug Femara/letrazole. Although other hospices might balk, they were willing and I'm so very grateful that I can feel as well as I do nearly 4 months into hospice.
Also, I want to emphasize, as the cancer invades your mother's brain, she may lose her personality, inhibitions, empathy. It's not only vital physical functions that are affected, but what makes us us. It can be absolutely heart-rending to witness symptoms like meanness, irrationality, repetitive actions, poor decisions, mixed-up emotions and/or behavior and appetite changes that can happen as the brain is destroyed.
I pray you have the strength to love your mom, even when she hardly seems to be the mom you used to know.
very big hug from California, Stephanie
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I too want to give you a hug and say you are such a wonderful, compassionate and loving daughter. I am sorry you're going through this. Prayers for both you and your dear mother.
Amy
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Hello all,
Just thought I would update everyone,
After we made the decision to start my mom on hospice- (which we got started on a Friday) by that following Sunday- she was no longer able to get out of bed, she was mostly sleeping and when she was awake, she was pretty confused. For the next 2 weeks or so, she would have days of extreme alertness where she would be awake all day, she would be talking up a storm, but not making any sense in what she was saying, and then days where she would sleep the entire day. She then went to pretty much only sleeping, eating less and less and drinking only about 2 oz a day. I was with her every single step of the way. I was able to take time off of work and I slept in her room with her to be there with her as much as possible. It was hard. Really hard. She didn't know who I was at times, but she was never mean or aggressive. She would smile, she would give kisses, she would lovingly caress my face. She told my daughter to not be scared, she would tell me she loves me in her moments of clarity. Sadly, on March 29th at 6:52 pm- my mom lost her fight. Easter Sunday, she began to have periods of not breathing that would last for 35-40 seconds at a time. I just knew things were changing for the worse. It was so hard, those last days. I'm so so thankful that we had hospice with us around the clock to help manage her pain and to try to keep her comfortable because I was allowed to be her daughter during this time and not her caretaker. When she finally passed, she waited until my brother and I were out of the room to take her final breath (I was scarfing down dinner quickly).
My heart is broken. I miss my mom. This past year of her journey had been one of the hardest of my life. We just continued to get bad news after bad news after bad news. I'm so sad that this had to happen to her. She was only 64 years old. I know that cancer doesnt discriminate and I am so thankful for the years that I have been given to spend with her, but just knowing that I will never be able to physically feel her skin, to hear her voice, to hug her any longer- makes me so sad. I have no living parents. My children have no living grandparents. It's just a loss that cuts so deeply in my chest, in my heart, in my soul.
Kim
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Dear Kim,
If I could wrap my arms around you in place of your dear mother, I would. Instead I'll try to comfort you across the miles in thought and prayer. I am so sorry she passed, but I personally believe she will remain with you until your last day. You sound like a loving daughter and are leading a wonderful example for your daughter. Hugs to you over these next several days, weeks and months when it's most difficult.
Amy
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Oh dear Luv,
Thank you for returning to us to share this important part of your story. Your mother and you all have been in my loving, healing prayers.
Luv, you are dropping from the active care phase to the mourning and bereavement phase. Be sure to use the hospice bereavement services available to you.
You may feel like a massive weight has been lifted from you, but that you are sinking down.
Allow the process to unfold.
If you feel too melancholy to go on, talk with hospice about it.
Although I know many will recommend antidepressants now, I believe with poet Robert Frost, that "the only way out is through". Please take the time to decide what course is right for you. Those drugs may be your best friends for a while while you undergo the process of transformation wrought by grief.
Please continue to be extra-special tender with yourself and all around you. This is a sacred phase of life.
I'm also an orphan and am gradually rising through grief to my true set point.
Much loving kindness, Luv, Stephanie
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Amy- thank you for sharing your story and your mom with us. My heart breaks for you. I too have lost both of my parents. Losing my mom was the hardest. All my love to you and your family.
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Kim, hugs to you and your family and I am so sorry for your loss.
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Kim, I am sorry for the loss of your mom. I know how hard it has been for you. I hope with time you will be able to look past the pain of the las year and enjoy the wonderful memories that you built throughout your life with both your parents. I am sure your mom felt your presence during her last days. She is at peace now and will remain forever in your heart. I wish peace and comfort to you and your loved ones.
Lynne
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Kim,
Peace and comfort to your family.
Terri
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