A place to talk death and dying issues
Comments
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Jaycee, thank you for that, it was interesting. I agree about not needing so much, personally I only want legal and financial stuff handled so DH isn’t overwhelmed, to not be in pain and that I’ve made is life better and happier while here.
I found the chemo/treatment rates interesting too but from what I’ve personally seen, a good portion of that is patients asking for one more trial or chemo, not necessarily MO’s pushing it. I hope when the end nears, I’m mentally ready to take in the news and accept that I’m done.
Where to die is something I haven’t given much thought to though. I’d rather not die in the hospital but I don’t want that memory lingering for DH to relive in our cabin either. More thinking on this one, I just don’t know.0 -
a reflection if you will. I’ve just finished viewing the funeral service for the 33 yo wife of a work colleague. She and he married in 2016. His father died while he was on a flight to Hawaii for his honeymoon. They flew straight home. Their little girl was born a year later. Within 24 hours of an emergency c section she was diagnosed with cancer. Small bowl cancer that had infiltrated the uterus and ovaries during the gestation of their daughter. She under went radical hysterectomy that day. She died November 30th. He a widower at 35, her parents without their daughter, a child without her mother. I am profoundly saddened, yet hopeful for a bright and promising future for wee Sophia who will make her way in life guided by her Dad who really could use a break. These are the stories that make us grateful for every minute we have with our own people. Love to all.
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jaycee - thanks for sharing that interesting article. This is something I'm just starting to think about. And it's something my DH and I will have to have a candid discussion about...eventually...
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Molliefish, what a sad, sad story. I can’t imagine how the mom felt knowing she was going to be leaving her daughter and husband. I am sad I will probably not see my grandson graduate high school, and my daughter has cried knowing he probably won’t remember me. I am so grateful it’s me and not my daughter going through this. I got to raise her. She needs to be here for him. I’m so sorry for this gentleman.
My daughter went to school and worked with a girl her age. Her and her husband had a daughter and wanted a second. Nine days after having her second daughter she collapsed and died. She had an unknown heart condition that you sometimes get during pregnancy. It’s just sad all around when anyone dies, especially the young.
I wake up every day grateful I’m still here and feeling relatively well.
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good article Jaycee thanks for sharing x
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Jaycee, Thank you for the link. The article really hit home for me. I had always said that I would not continue treatment if I faced the end of life. Last February, my MO told me that I was reaching the end. My liver and spleen were full of cancer. I had lost 35 pounds. Blood test results were awful. My bones ached. I was very weak and needed assistance standing and walking. My MO offered me the chance to try Adriamycin but told me to think about it for two weeks. It was a Hail Mary play. He told me that if I decided to try the treatment, he would tell me if it was time to stop. I told him that I would not continue if it had a negative impact on my QOL. We understood each other. I decided to try it. At the time I had a few goals. I wanted to spend more time with my DH, my children, and my grandchildren. I wanted to work in my garden one more time. I wanted to have one more Christmas. I have been lucky. I feel great and have had no SEs.
Am I one of the statistics? Will I die while on chemo? Am I wasting resources and money? I believe that is not the case. I HOPE that is not the case. I have appreciated every day I have been given. I have shared valuable, precious time with my DH. Although COVID has prevented me from spending much time with other family members, we did have some small, socially-distanced cookouts, and my DH and I watched some of our grandchildren’s soccer games from the car. I did work in my garden during the summer. We had drought conditions here, but I still had some successes. Now it is December 4. My Christmas tree is up and decorated. My Christmas shopping is done, and all the gifts are wrapped. Since March I have made seven quilts so my grandchildren will have something special from me. Those quilts are boxed and wrapped with the other presents. I am counting the days till the 25th. Although my DH and I will not be with other family members, we will talk to everyone else in the family to share the celebrations.
I don’t know what comes next. My previous scans had shown some improvement, but my most recent scans showed slight progression. My tumor markers have increased slightly. My MO and I talked, and he asked what I thought about continuing on Adriamycin since I still feel so good. I jumped at the chance. I still trust him to tell me when enough is enough. I do not feel like death is imminent. Whatever happens, I will remain grateful for these past 9 months.
Each person is unique. What is right for one might not be right for another. I believe it was important for me to discuss my feelings about QOL with my MO early and continue those discussions over time. It is imperative that he not only knows how I feel, but he respects my wishes.
I apologize for such a long post. I had more to say than I expected. Btw, I won't need all those elements to be fulfilled to have a peaceful death. I hadn’t even considered some of them
Hugs and prayers from, Lynne
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Lynne, thank you for your personal thoughts, it really touched me.
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50sgirl, beautiful statement addressing a "Hail Mary", QOL, MO-patient relationship. I would want to keep trying and will depend in DH, DD,DS and MO to help decide when to stop.
I have read Being Mortal and I have seen the brave when I was a Hospice Volunteer. Sometimes, it is not an easy call to stop active treatment.
My sister in law was on her last chemo combo for metastatic tongue cancer and was waiting to start Keytruda. No QOL, but hoped to have more time to see if if she could turn it around. Pneumonia, collapsed lung, cancer in pleural fluid took her life. She was 59. My brother is distraught, questioning if he should have stopped tx earlier and taken her home. When to continue tx, when to stop tx can be an impossible decision when there is a glimmer of hope.
We try to live until we cannot.
Peace and kindness to all.
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I guess I have now lived through some of the death process to know that so much is out of our control. Mom is still with us but just physically. She does still recognize us but she can no longer communicate. Not sure if it’s mets, meds, stroke. Have no way to know. But she is not in pain. She wanted to go quickly and she is getting her wish. The dramatic decline is really hard to believe. No mobility. Anyway...I won’t paint the whole picture because you all get it. I’m in bed today sick from exhaustion. I feel so guilty not being with her and dad to help. I worry about him as well because his health is not great either. They got lots of medical equipment delivered today so hopefully that will make a few things easier. Much love to you all
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Kjones13, I’m so sorry for what you’re going through. Know I am thinking of you and sending you hugs.
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KJones, I'm sorry for what your mom is going through; my heart is with you.
Sandi, reading of your brother's guilt makes me realize how little we as a society talk about end of life matters before they are upon us. We're bombarded with consumerism and messages to stay active, eat well, keep our minds engaged....everything about living life to its fullest! But then when tough decisions about illness, its treatment and death arise, we're blindsided because we've sort of been conditioned to not think about such things ahead of time. We're unprepared. We're left to fly by the seat of our pants during difficult, stressful times which often later results in guilt about choices that were made. They look different in hindsight.
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Kjones, I am sorry for all that you and your family are experiencing. It is so difficult for us to watch a loved one leave us. It is good that your mom is not in pain.You shouldn’t feel guilty that you needed time to rest. You need to take care of yourself. What you are going though is mentally and physical exhausting. I am sure your dad understands and appreciates the help that you are giving. My thoughts are with you and your family.
Hugs and prayers from, Lynne
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50sgirl, I am so glad for the time you have gained with your current chemo, and for the clarity you have about how you want to spend that time. Your post is a very important one to me, tucked away in my mind for when I have decisions to make. And can I just say her that you are a blessing and have such an eloquent way of sending kindness through your words.
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50'sgirl- thank you for your post- came at a good time.
happy holidays to you and everyone
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mom passed away on 12/31/20 at 9:00. That was one hell of a roller coaster ride! After my last post, she rallied for about four days and then faded again, and then rallied again, and then faded again. Hospice has this little blue book that they hand out about the dying process...to try to give some signs and symptoms to be aware of. I read it 30 times...mom followed her own path 😊, but now looking back I understand better. Mom followed me on this site when I frequented it more in my first 3-4 years of treatment. She loved the support it gave me. She mourned the losses along with us throughout the years. She always said she wished she could take my place. Mom had ovarian cancer. I wish there was a site like this for her. She felt very alone in her journey. I appreciate you all letting me vent here. Watching my mother go through death has changed my ideas of what I want for me and my family IF I get to have any say so...I’ll be happy to share my experiences with death and dying if anyone hAs questions. Thanks again and RIP Mom ❤️
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kjones - I am so very sorry you lost your mom. It is just heartbreaking. This site is so wonderful that it provides this forum for us to share our feelings and experiences and support. The ladies that share here are what makes it so special. When you are ready, I would appreciate hearing your insights on end of life care/planning.
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kjones, sorry for the loss of your Mum. The dying process can be a roller coaster and I think everyone takes their own path. She was very lucky to have you by her side and being by your mum side at this time is one of the precious things we daughters can do.Thinking of you.
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Kjones, I am sorry for your loss of your mom. It is good that you were able to be with her. I am sure it gave her comfort and some peace. I would like to hear how the experience changed your ideas surrounding your own death. When you are up to it, perhaps you can share. I have a few questions, but I will wait to ask. I have you in my thoughts and hope that you can draw on all the sweet memories of times with your mother so she can bring a smile to you face and the warmth oflove to your heart.
Hugs and prayers from, Lynne
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Kjones, I’m so sorry for the loss of your mom and the roller coaster you were on. I am thinking of you and your family and send warm hugs your way.
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so very sorry for the loss of your mother.
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kjones,
Condolences on the passing of your mother. May her memory be a blessing to you
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Kjones,
I'm so sorry to hear of your loss and the challenges you faced along the way. You providing amazing support for your mother and, while it was not the same cancer, I hope that she felt some support coming her way from BCO. My thoughts are with you and your family.
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KJones, I'm so sorry for your loss. I'm glad you were able to be with her. I wonder too like 50's girl wonder what things changed your opinion on dying/the process/your own death and would be curious of your insights when your ready. For now, I'm sorry for you and your family and wish and hope for peace and comfort for you all.
50'sgirl, I re-read your post and really appreciated your personal thoughts.
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thank you all for your support and condolences. I appreciate it. I can tell you that I am definitely in a weird space right now. I’m either in shock or denial. Even though I kissed and hugged her dead body and I saw her taken out of the house by the funeral home...I don’t feel like she is gone. It’s like she is on vacation somewhere and will be back...I obviously need to talk to someone and soon. I go for treatment tomorrow and I’m dreading it. I have to face the nurses and Drs who took care of mom because we went to the same cancer treatment facility...together.
I will preface this post with: it was my greatest honor to be able to take care of my mother. I stayed with her night and day. I was not with her when she passed. I went home to be with my family for a few hours, I only live 30 minutes away... so she was just with my father...which I think, she wanted it that way.I originally had thought I wanted to die at home, but unless my children are grown and out of the house, I do not want that any longer. I just can’t, in good conscience subject my children to seeing the dying process.
So much is out of our control. I guess I thought I would be able to die with my brain and body still functioning at a certain level and that very well may NOT be the case. Mom’s mental capacity changed dramatically and I don’t know why. She was unable to communicate much of anything her last month of life. She could talk but the words didn’t make sense...some did, but not much more than a couple words at a time. She was in her body but not really...it was like she had one foot in each world. Her physical self and mobility also changed drastically.
Hospice is a wonderful service but I was left with wanting more help...and my situation may have been unique but I’m sure it happens...my brother has 3 small children and lives hours away...and of course there is covid...and then my father is older and not in great health himself and then there is me 8 yr stage 4 bc...dad got a horrible skin infection in his leg and had to be hospitalized for 3-4 days. I had to take care of mom...lifting her to get her to the bathroom was painful for me and anxiety provoking for mom as well as painful for her. I needed someone to help me physically and there was no one except my husband. God love him. He had to do things no son-in-law should have to do, but he did and I love him so much more for it. I felt like hospice should have helped. Maybe provided a cna to help me out but the organization is just not set up that way.
Hospice gives out this little blue book with signs of death. I wish I would have read it sooner before I was right in the thick of things.
I didn’t realize how the medication would change throughout the process. Mom had a whole page listed full of meds because she had multiple health issues. Eventually we stopped giving her her heart medications and just focused on comfort. I had no idea that people rally before death...and how easy it is to get sucked into thinking “hey mom is getting better, maybe this is not the end.” Doctorate and masters level educated people here and we still got sucked into believing that! I had no idea vomiting was common. That was just awful...even with haldol around the clock. The regular anti-nausea meds didn’t work except for Ativan. And you better believe I made sure she was in no pain. There were a couple times she was able to let me know and then I made sure she had plenty of morphine. My phone is acting up
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kjones, thank you for sharing.
In my experience the process of dying is often far from pleasant. I have witnessed it several times and have yet to to see someone die peacefully. I am an advocate of assisted dying and IF the opportunity arises for a person to decide, then they should be able to choose. However, I realise that often when the end is near there isn't the capacity to choose. When a dying person rallies it can be heartbreaking, even frustrating, for loved ones. Unfortunately it can be part of the dying process.
My mother was actively dying for last two weeks of her life. She endured delirium,tremors and fecal vomiting. It was a very sad and distressing. I am still honoured that I could be by her side. I just wish death could have been easier for her. She was a good woman and I love her dearly.
Hopefully, you will find thoughts of those last day are replaced by memories of happy times. As much as it has been traumatic for you and your mum, you do her no greater honour than having been by her side inher last days.
Thinking of you xx
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This is such good information. I just bought a couple of books by Barbara Kames, RN. She's a hospice nurse and writes about the process of dying. The advice was actually very helpful.
Kjones, thank you for taking the time to share your experience. I've had many thoughts about where I want to die - assuming I get to choose. I don't think I want to die at home. For one thing, our house is small and there's really no place for a hospital bed, should I need one. I don't want to die in the bed that my husband and I share. There is a beautiful hospice facility very near our house and if I get to choose, I would choose there. We visited a woman there once, before she died. It was lovely, clean and full of sunlight.
My mom died in a care facility. She had a wonderful hospice nurse and wonderful, kind caregivers. There were rose gardens and beautiful trees outside her windows. It was a lovely, peaceful place. When my dad went to check it out before my mom moved in, the owner of the home had just returned from the Farmers Market and was unloading a trunkful of fresh produce. Some of the caregivers there were from South Africa. They were especially tender in their care and so respectful of the residents. I think there may have been 20 residents, but I'm not sure. There weren't a lot. Everyone had a private room, unless a married couple wanted to share a room.
Anyway, I digress, but I'm so thankful for this topic. Wishing all of you lovely ladies (and gentlemen) a peaceful and blessed day.
Carol
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***if you don’t want to read about the actual physical dying process, then skip this entry.***
I got to speak with the social worker at my cancer center yesterday. They probably called her in to talk to me because I had to be convinced to go in the building...I knew I was dreading going but had no idea how traumatized I felt. I sobbed as the chemo nurses, who have taken care of me the past 8 years and mom the last 3 years, took turns hugging me. It felt so good to be hugged. I didn’t know I needed that.Anyway, the social worker and I have gotten to know each other pretty well through the years. But I had forgotten that she worked pediatric oncology before. She told me a story about a 16 year old boy she held as he was dying. He was doing the terminal secretion thing. He had been silent for days. She had whispered to him “I hope this is not painful for you. It’s so loud.” He whispered back to her, “It’s not painful because I’m not there. I’m over in the corner watching.”
I have spoken about the non-profit Inheritance of Hope before. The co-founder lives in the town next to me. I had lunch with him several years back. He told me about his wife’s last moments..,he said she had been in a comma like state for several days and all of the sudden she sat straight up in bed and looked around the room with the biggest smile and said “wow!” As if she was looking at individual faces...And then she fell back down and was gone.
I don’t think mom’s death would be considered unpleasant or unusual. It was loud and distressing for my father. He said it seemed liked she was drowning. Not that she was struggling. Just a lot of fluid as the breaths got shorter and shallower. The hospice nurse tried to warn us, but Dad had just gotten out of the hospital and wasn’t really taking in any new information at this point. He was completely heartbroken and just wanted to be next to mom. I had gotten the medicine they prescribed to dry the secretions and told him about it several times. We also had discussed turning mom to her side, but anytime we touched her to move her she pitched a fit. I don’t know if she was in pain or just didn’t want to be messed with. She was over it by then I’m sure...
When we got the hospital bed delivered and put in the bedroom it was Dec 15th. This was not her bedroom but a different room. Mom was not convinced she was still in her house. She thought she was on vacation. She made several references to wanting to go home that week. But there was one day in particular she said plain as day “I want to go home.” And I knew what she meant. Within the last week of her life, Mom had told me several times “I’m dying” or “I’m gonna die.” She was always on the toilet when she said it so I wasn’t sure if she was anxious, hurting, or truly trying to tell me. A few days before she died, she told me “it’s soon. I tell you, it will be soon.” At that point, Dad was in the hospital so I told her she had to wait for him to get home. I begged her to wait for him, as he would never forgive himself if he wasn’t with her.
At 1:00 on the 31st, I heard her breathing change. The crackling sound on the secretions had started. It continued through the night and I did sleep off and on. At 6:30, I heard it change again. It was like it got deeper in her chest. It startled me so much that I woke Dad up and we stayed by her side. My brother was planning on coming up that day anyway. He got to spend about 5 hours with her. While we were all there, the hospice nurse came by to check on mom. She listened to her heart and lungs. Checked her arms and hands, legs and feet. The nurse heard nothing in her lungs. She told us she didn’t think it was the secretions. (Mom had been clearing her throat all day)...so we all kind of took a deep sigh of relief and the nurse talked about coming back on the weekend or next week...she also gave us instructions on how to use the medication to dry up the secretions if we wanted to. She reassured us that the breathing is not painful for the patient but is unpleasant for the loved ones. My brother said his goodbyes and went home. I said my goodbyes and I would be back in the morning. Mom and Dad usually just watched the ball drop and fireworks on TV for New Year’s Eve. I hadn’t been home in a week. I arrived home and fell asleep on the couch. Dad called at 7:45 and said her breathing had started to increase to 30 breaths a minute and that the noise was louder on the inhale and exhale. I told him that was what the nurse said might happen. He called back at a little before 9 to ask about the medicine. I told him he could give it if he wanted to. He called back 3 minutes later and she was gone.
Mom never had cold feet. Never had any discoloration at all on any extremities. She never spoke of seeing loved ones who had passed. She did think someone was looking for her/out to get her, but she wasn’t overly panicked about it. I’m trying to think of other signs...ask me questions if you would like..
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kjones - thank you for taking the time - and emotional energy - to share your experience.
I'm so glad the nurses at your cancer center were there to give you hugs and a 'safe' place to let go of your emotions. You have been being so strong for your parents b it sounds like you needed a time to give in. Again, my sympathy for the loss of your mother.
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kjones - thank you for taking the time - and emotional energy - to share your experience. It certainly gives me things to think about.
I'm so glad the nurses at your cancer center were there to give you hugs and a 'safe' place to let your emotions go. You have been being so strong for your parents. I think you needed a chance to give in. Again, my sympathy for the loss of your mother.
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kjones, beautifully written explanation.
I lost my mom in June of 2009. She also said she was ready to “go home.” She was in a nursing home. We knew what she meant. The night before she passed, my husband and I visited her. I didn’t realize the signs, but she wouldn’t acknowledge my husband. I was a little upset. When they called the next day to tell us she passed, I then put two and two together. She wasn’t really with us.
I also think that at the time of death, some wait for others to leave because they don’t want them to see it.
I really appreciate your explanation. I have decided to try and die at home when my time comes, especially if loved ones can’t visit in a hospital. That would be so cruel. After I’m gone, my husband plans on selling this house and moving to our other house. I don’t know if I could do it if he was going to continue to live here. I think it would haunt him.
I am so sorry for your loss. I had one parent die in a tragic accident and one die for medical reasons. Whether it’s quick or slow, losing them hurts really bad.
I’m glad you got to talk to someone and get those hugs. I hope you can have good memories with your mom flood in as the weeks and months go on.
I imagine you will focus more on your dad than yourself, as I see how much you cared for your mom. It’s heartbreaking to see what the spouse goes through. Your mom was so lucky to have you.
Hugs.
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