My mom is dying from pancreatic cancer. She's been beating the odds, and it has been 7 months since her diagnoses. She is stage 4. There is nothing that can be done right now except pain management and making her as comfortable as possible as the cancer takes its time. So, here is my question, and my dilemma. My mom, keeps going off her pain medication. She was up at the Huntsman (a specialty cancer hospital) for a week about a month and a half ago because the pain had gotten so bad. They listened to her. She doesn't like pain meds that make her feel foggy, she wants her mind clear and focused. They did radiation for her lymph nodes as they were pressing on nerves causing pain in her back. and they put her on pain patches and gave her pills only for break through pain. she did really good with it for 2 weeks after coming home. She was then talking with a friend and her husband, the husband made a negative comment about pain patches and my mom took hers off the next day. Right now she is on the lowest pain patch, and refusing to take pills at all. I know it is her body--its just that she is really beasty when she is hurting. She says horrible things to my sister who is her primary care taker right now, to my dad, and well to any of us who come to help out. She refuses therapy of any kind, won't talk to anyone about how she is feeling about the cancer even though it is obvious to all of us that she is struggling with depression (who wouldn't be?) from this. My sister tried telling her how it is for us to see her in pain and how much better she was doing right after the Huntsman and my mom insists that she is feeling worse now than back in October when she was diagnosed even though at the time, the pain was so bad she was vomiting constantly, couldn't get out of bed and now she is able to be up and doing things again (although that is slowing down a bit as she keeps going off the pain meds!!) When she meets with the doctor she will go back on for a while but within a few days she goes off again. I know I can't change her. She is the way she is--I personally want to shake her she frustrates me so badly. Telling us we don't care about her at all, or that we are pill nazi's. (I could go on...but I think you get the point) she is really toxic right now. She has been throughout much of my life, and the past 5 years have been nice as she had been changing and our relationship was really different. Now its dredging up all the old feelings because her manner is just so unpleasant. I'm an adult now and had learned to have healthy boundaries to keep me emotionally safe from her, but right now she needs the help. She needs the care and I can't just walk away telling her that when she is ready to be respectful of me she knows where to find me. She's dying. I know she doesn't even know half the stuff she is saying. I know its the pain talking--but because of her past patterns it is making it hard for me and I'm looking for ways to cope with her now that my boundary system is challenged and taken away from me by the simple fact that she is dying. Sometimes I wish I could just walk away from her and say fine, die in pain then. But I can't. She's still my mom. I wish there was a way to get through to her. Has anyone been through anything like this? What do I say to myself to make this okay? What do I say to her that is respectful but not enabling her to be verbally abusive to me or my siblings? How do I appropriately stand up to her while still being compassionate about her disease?
I think it might be time for some tough love.
You need to be firm and loving. Tell her that when she's off the meds, she is impossible to deal with. She won't like it, but you need to tell her the truth.
YMMV
LBC
My heart breaks for all of you. Mimi has great advice. Have been through similar, but don't have any magic answers. Just wondered, are you and/or your mom involved with Hospice? Not sure about your area, but they've been a godsend to me in the past, even though neither dying patient in my family would consider their services. They did grief counseling (before, during, and after) and had wonderful programs for children. Here's one near you http://www.harmonyhomehealth.com/ but there seem to be others in your area as well.
A gentle reminder - has humor helped? "Mom, you're difficult to deal with when you're in so much pain - shall we try time-out?" or whatever brand of humor your family favors. I always found it difficult to remember that it was okay to laugh, and yes, even gently tease the patient, when the stress was so overwhelming.
Not to nag, but I hope you can find support for yourself in whatever ways will help - as you know, you have to take care of yourself first. Seems impossible when you're caring for a dying mother, but it's probably some of the most important advice we all have trouble following.
I'll be thinking of and praying for you and yours. Hugs.
Hi C.,
This is much like dealing with a patient with dementia. Things come out that you don't expect. My mother-in-law came from NC to help with my mom after her hip replacement surgery. My husband, kids and I were fried as we had been caring for my Mom and my Dad for three years. We finally asked for short term help. My mother hatefully told my mother-in-law that she didn't have the sense that God gave a billy goat. Within 10 minutes she was hugging her telling her she was so glad she made the trip, not remembering one hurtful word she had said to her. My mom and I always had a good relationship oso it was never difficult emotionally for me but she didn't have a good one with my sister who was living with us at the time to help out.
Two points I want to make:
You are going to tend to her. You've already made that decision. You have to grin and bear it. I know she is hurting you. You know it's the pain talking. If it were your child, would you have these feelings? Think of her like that because she really needs you just as if she were your child. Reach deep down and love her for all the things she has given you. Whether good or bad, she had a hand in who you are today. You want to care for her, because of her. My sister struggled for so long and at the end, their relationship was so sweet. I cry when I think of how they finally had the mother-daughter relationship that I know. If you are this close to losing her, just smile through it and pray each and every morning for God to get you through it.
The next point is that there are natural pain killers, strong ones, that should give her some relief without the side effects of grogginess . The one that comes to mind is Arnica. Go to a pharmaceutical grade health store and tell them what you are dealing with. They should know what would work well for her. If they suggest something and you are unsure, come home and research it before you buy it.
C., I'm so sorry you are dealing with this. You have a compassionate heart and it will serve you and your family well!
God bless,
M.
I am a cancer survivor (18 months clean), and I had a grandmother die of Pancreatic cancer at 86 years-old.
As a caregiver, the burden on you is almost as much as it is on her. But, it's not about all of you right now. She will be gone very soon, and I'd really recommend focusing on her final days.......even if she is difficult.
I understand the frustration you feel. My husband had me, our son who had just turned 2, our infant daughter (10 weeks old at diagnosis) and NO ONE to help. We couldn't take either of our families coming in from out of town to help. So, we just dealt with it. He said some really awful things to me when the stress got too great. Example: "You realize I may die!" His response, "Go ahead". He'd hit his breaking point of fear and frustration.
Please don't look at it as forcing her to take her pain meds for your sake. If she doesn't want to be foggy and wants to be acutely aware of what's going on around her, please honor her wishes.
The idea of using humor to diffuse tension is great. Tell her she's acting like a 3 year-old in a 60 year-old woman's body. Have a visiting nurse or a hospice nurse be responsible for her overall care so you (sister, father, etc) don't have to be burdened with it and can focus on helping make her final days the best possible.
Focus your energies on documenting everything about her life that you can, because when she's gone, the stories won't be from her point of view any more.
Cancer is awful. I was lucky. My diagnosis was early, my cancer is highly treatable, and my treatment wasn't as bad as some.
But, I didn't want to die, and I've been fortunate to have beaten it for now. I'm not sure how I would be if my prognosis were different. Instincts are very powerful. We don't know how we're going to react until we're in a tough situation (like cancer diagnosis, childbirth, etc). It sounds like she's dealing poorly, but it may be the only way she can cope with having a terminal death sentence.
Good luck to your family. I hope you all find peace (and your mother's comfort) soon.
C.,
Bless your heart. Been there done that. You've already gotten some great info, but what no one has touched on is the fear and anger people go through in a time like this.
As a registered nurse (never worked hospice but was there MANY times with families going through similar experiences) there are documented "steps" people go though as they are dealing with impending death. A hospice nurse should be able to help and/or her doc should be able to suggests the grief support groups that Anne mentioned or books.
Find any books by Elizabeth Keubler Ross. She was a pioneer in watching/studying dying people and what they go through.
But fear and anger are 2 big steps that many patients and their family members go through and many times stay stuck in. Yes, absolutely if the pain meds help and someone can convince her that is the best way to go for many reasons, great! But it is HER right and HER choice how she wants to handle her illness.
As a nurse I know and understand everything I just told you. But as a daughter who also has been though something very similar, it is very difficult when you are being the target of all criticism, complaints, etc.
I also lost a 44 year old cousin a few years ago to brain cancer and watched similar events between my aunt and cousin.
Personally, I found it helpful to talk to my husband/friends. I did not want to do or say anything that I would have to live with the rest of my life. Of course I haven't forgotten the hurtful things but I've forgiven.
You and your family will be in my thoughts and prayers.
Well, you just do. You just tell her, whether she hears it or not, Mom you are in physical pain and I -emotional. It's weird because we know how to emotionally distance ourselves when we are watching all sorts of movies about sad things, but in real life we cannot do it. So the best is to tell her, gently how you feel. You cannot expect her answers to be kind or wonderful, or for her to have a miraculous change, but you can tell her how you are grieving ahead of time for her and that it is hurting you when she is mean to you. Even if she is dying. I remember a woman in my neighborhood a couple of years ago who died of this same cancer. I was sad for her son, but for some reason she was always nasty to me. Always no matter what. I felt guilty that she died, and that i avoided her because she just snapped. I should have asked her why she was nasty.
I'd like to fast forward this, I had uterine cancer in the early stages (woohoo ten months ago and am kicking on. In no way was I going to be remembered as nasty after this. I was trying to joke with the nurses after my operation (ouch) and talking to people and they visited me at home and I am grateful to be alive. People who are not nice (like my own mom, and a sister, too) and even the grandmother who died in our house of pancreatic cancer (she was not nice too)-those people are who they are and we love them because of who they are. Perhaps we can take a piece of their hornery fire in them and borrow it for those moments when we are fighting for our husbands, and families and babies. We are all here for some reason, what mine is I do not know. Well, perhaps in this you could simply ask your mom, WHY have you been so sad all your life?
Mimi that was a very beautiful answer, and I agree completely, You CAN't really stand up to her 'compassionately'. Her life is very limited and yours shall go on and by the tone of your question it's clear you will make it through the healing process. One Mom, one life, as difficult as the moments are, suffering along with her will make you a stronger healthier person in the end. Try to stay focused on what you mentioned as the good years you've had together. She's very fortunate to have such a loving patient daughter. My heart is with you.
Oh sweety, I’m so sad for you! What you are going through is very rough, I know I went through something very similar. In my case my mom had Lupus which led to end stage renal disease and congestive heart failure. She was on dialysis for 8 years before she died.
What the other poster (Mimi) said is VERY true; your mom is reverting to a child like state. She is selfish and self centered and the world is revolving around her. What you and especially your sister, as her primary care giver, need are your own counselors. PLEASE go talk with a member of the clergy or a therapist. You both need to have someone completely removed from the pain and the grief to vent to. They will help you with coping strategies, anger management and see you through all the stages of grief.
PLEASE go talk with someone because the odds are your mom will not be able to change at this point. God bless you and your family!
Actually, she sounds like she might have dementia. My mom had full-blown dementia when she had lung cancer. She went through two rounds of chemo and radiation, which is what caused it. She was unreasonable, paranoid, and argumentative. I finally talked to her oncologist and he confirmed the dementia. He also told me that my mom wouldn't live to see the new year (this was September) - something that my mom was hiding from me. His prognosis ended up being true. She passed 3 days before Christmas that same year.
Talk to her doctor. She is not herself, whether from the pain, depression or dementia.
{{{{{HUGS}}}}
