A place to talk death and dying issues
Comments
-
calico I don't know I hate doctors that are like that. I didn't have any negative comments from anybody except friend of mine who has cancer or that's just a prayed for me and one of the doctors that in the practice with my oncologist. Anybody that's so me when I was getting chemo and knew that I was bedridden basically for a year except for couple days I think I'd for two days a month and that was the day of chemo understood it was all about quality of life. Which isn't much better these days but I'm still in bed. I still have pain and I'm exhausted. I just did what I felt was best for me and honestly if nobody understood I don't really care you're not living my life still not walking in my shoes. Good luck
0 -
Catching up-I am having surgical consult to discuss colostomy. There really are no alternatives, even though it's risky. Hoping I will be able to eat normally instead of just liquids, if it's a successful.
Also, having infected port replaced. I should feel better, just by getting off the strong antibiotics.
I guess I feel better because I'm doing something. I'll keep you posted. Wilsi
0 -
Hello ladies,I visit this thread once in a while but have never posted. Wilsie, I hope your surgery goes well.
I think about death every day. I live alone, have no children, my hd passed away 6 years ago of brain cancer. I have a bf for about 2 years who is wonderful and supportive but we don't live together. I'm not really afraid of dying but I am afraid of suffering. When hd fell ill, I stopped working and took care of him for 1 year. His last stay in the hospital was so hard. He was under palliative care but he suffered and the care was not good. For me, at least where I live, I want to finish my life in hospice. My will is done, have a power of attorney if I lose my marbles, uncluttered the house of useless papers and material stuff. Made a list of all my passwords and the only thing I have yet to do is give a power of attorney to my sister for bank accounts, investments etc. My sister, who I love very much and is so good to me, is very reluctant to talk about all these issues. In fact, neither her nor my bf nor my close friends want to talk about death. I understand but sometimes I just wish they'd listen a little bit instead of telling me "stay positive, your're gonna beat the odds, you look so good, have faith and on and on". Or they say "you gotta do what you gotta do". I told them that I will decide when enough is enough and hopefully I will have all my marbles to make that decision. For now for me it's still an invisible disease so to speak and I'm doing relatively well. But I'm not kidding myself. Luckily I have my psychologist who listens to me but he will not be the one handling my affairs or ensuring that my wishes are respected when things will get rocky.
How do you address these issues with your relatives/siblings or people close to you?
Linda
0 -
Linda, it's interesting. Even people whom you would think should be able to are not prepared to discuss it. I had a talk with my Mom about my current thinking, reserving the right to change my mind. My husband knows too and my oncologist will know when I choose to have the discussion. And my Mom was very practical about it.
Fast forward to last weekend. Mom had open heart surgery on Monday (she's doing well), and I came to be with her. I'm her health care proxy. Like it or not, I felt I had to ask what she wanted me to do if things went really wrong. She couldn't/wouldn't answer the question. Just told me to use my best judgment.
Thinking about these things makes people feel mortal, so they don't. We do because we already KNOW we're mortal.
Wilsie and Calico, I hope you feel better.
0 -
Yes, I am very much thinking of Wilsie and Calico tonight.
0 -
Hugs to Blondie, Calico Wilsie and everyone else. This is not easy talking about endings. I didn't want to be my Mother's health proxy so my Aunt/Brother are sharing it. My DH by default will be mine. Still there are things I would like to get done by a lawyer and my DH won't. frustrating. Amazing what folks refuse to discuss. I hope your Mom does well after her surgery pajim.
0 -
Hi, Linda, you've done a wonderful job of preparing what you need to to make handling your affairs doable for those you leave behind.
I don't think we can change some people's reactions to the certainty that someday we will be gone. They just can't handle it, and while we can try to get them to face our reality, it's likely an exercise in futility. We can't always get what we need from them, perhaps especially in a situation like this. Frustrating, I know, but less so if we come to peace with the fact that they can't do it.
xoxoxooxo
Calico
0 -
I have a daughter and son in town. 2nd son in Phoenix. My daughter goes with me to oncologist visits, and it's good to have someone to ask questions I am not brave enough to ask. She has been by my side every step of the way. Sons would gladly go with me, but I want daughter, just as a child would want their mother. Yesterday, when onc was trying to explain the risks of my having colostomy surgery, I spoke up and said "I am optimistic", the doctor said "yes, I know" and looked at dd. So, she keeps me balanced without bringing me down. Even as close as we are, we haven't discussed "the end" in much detail. I have advanced directive, will and she can sigh on my accounts. Have I forgotten anything important
0 -
Linda, you ask how to address these issues with your loved ones and the short answer is "very delicately".
What I find often works is that good old "sandwich" method. I don't use a long, labored sit-down-and-lets-hash-this-out for a few hours approach. First, I wait for an appropriate conversation, say something like discussing the passing of an elderly neighbor or some news item on TV about someone wanting to prolong life via extreme measures. I might make a brief comment on the topic, then mention what I would like, such as I don't prefer extreme measure for myself but everyone's entitled to their own opinion. If dh is open to a little discussion, it might go further. Then before it gets too grim for him, I will pause and change the subject.
Other times, I have things figured out and present it as a sort of "hey, this is what I was thinking." I'd like to purchase a headstone (having our cremains buried in local cemetery), so I visited one place by myself without telling dh. Then I just presented a little bit of paper work about it, something he could view when he preferred. I plan to check out another place that might be a bit more reasonable, figure out what I want and then casually mention it to dh.
As much as it's on our own minds and we don't have a problem grappling with these issues, I think our loved ones prefer it not be the center focus. I know just having a few things in place has made both dh and I feel relief. I certainly don't want him and ds making decisions in the midst of grieving. Their way of showing love can sometimes be by "spending more" and I don't want or need that when it's my time to go.
0 -
Thank you ladies for all your good advice and responses.Wishing you all a good day.
Linda
0 -
MrsM, great suggestions on how to weave comments, ideas, and one's wishes into conversations that feel natural. One additional suggestion: Write a letter (or more than one letter), describing your values and how these have influenced your wishes and choices; how important it is to know that loved ones respect you enough as a person to pay attention to your values, wishes, and choices; how you realize the difficulty loved ones face in contemplating the end of your life and living in a world without you; and how you believe they will be giving you a precious gift by honoring your choices and wishes--an act that will bring them great comfort at some point in the future. You might also want to add that you are comfortable having a conversation in person or exchanging letters about this topic--whatever you think might help build understanding and acceptance of your place in life and your wishes. People tend to hold onto letters, reread them, and contemplate them at many different times, when they might just block out what is being shared verbally.
My thoughts are with all of you as you continue to face the challenges of contemplating end of life--and the challenges of scans, surgeries, and all the stuff that surrounds living with metastatic disease.
0 -
Wow, Brenda, your post just blew me away because of its profound insights. You make so many good points about this process. I am also in agreement that the written word is quite powerful and meaningful. I plan to write a few things down today simply because of what you've written
0 -
Hi, ladies, long time past my bedtime, but wanted to check in. My onc asked me what I wanted to do with respect to stopping treatment. I asked him what his recommendations were. He said he could try me on Halaven, but I reminded him we'd talked about Doxil, and he agreed Doxil would be better because it's not as toxic. The onc nurse said it might give me Hand and Foot syndrome and I got that in a big way with Xeloda. I really don't want to live through that side effect again. It was miserable.
The onc also said we weren't done with the list of medicines he could try on me.
So I got my first Doxil infusion today and will see how it goes. I'm willing to try it, but if the side effects get too bad, I'm not sure what I'll do anymore.
Thanks for listening to me babble.
xoxoxoxox
Calico
0 -
CalicoCat, best wishes to you on the new treatment.
0 -
Calico, I sure am hoping it doesn't give you any bad side effects. It is great that they have so many options for treatment these days.
0 -
Calicocat- it is refreshing to see you muse/ "babble" about whether a new dug/ SE is worth the misery. I am glad I am not the only person who spends my time evaluating not just whether something keeps me alive - but in what shape am I in? QOL is everything. May this new path be tolerable for you. Wishing you peace and success.
0 -
Brenda, thank you for your words of wisdom, very insightful.
0 -
I am scheduled for surgery on the 22nd
I am scheduled for surgery the 22nd to place a colostomy. My bowel has closed up almost completely with bc tumors. Anyway, my daughter has expressed the need for me to sit down and discuss my final wishes with her and my sons. I suppose I had taken for granted that they all knew, and she does know, but is also executor of my estate and worried that the boys do not. The idea appeals to me, as I have tried to be proactive and have my finances, etc in order. I have had a will for years, and have also been working on a list of bequests. She brought up the thought that I should write down what type of memorial service, confirm that I want to be creamated, and where I want my remains.
So, will get that done this week, and it will relieve one more stress for dd. It will make me feel better, too. Sons usually have some advice pertaining to my health, but daughter is the one who goes to every appointment with me, and knows my wishes best, so writing things down will make it easier for them all.
Wilsie
0 -
Wilsie, Good for your daughter for asking and to include your sons. That way everyone is on the same page. I have relied on telling my friends as I am divorced and my kids were younger 4 years ago. Now at 21 and 16, they should probably have an idea of what I want, Good food for thought.
0 -
Dear Calicocat,
Isn't Doxil the same as Adriamyacin? That particular chemo drug has some serious cardiac side effects. Please look into that one b4 committing to it!
0 -
Valerie, Doxil & Adriamycin are "sister" chemos; my understanding is the main difference is Doxil sits in the fat cells & takes longer to leave the body. Both are potentially cardiotoxic; therefore, a Muga or Echocardiogram is done before chemo to make sure the heart is healthy enough to withstand it. Usually these diagnostic tests continue to be conducted throughout treatment. Each chemo has a max dose allowed per pt. The idea is to "catch" any changes taking place in the heart b4 any actual damage occurs. Of course, we all know there are exceptions that can & do occur. From what I've learned, these 2 drugs continue to be used as they show effectiveness for BC tx. I believe Adria is one of the original chemos used for BC.
0 -
Thanks, Valerie and SyrMom, interesting you should bring up Doxil as related to Adriamycin. When the nurse brought out the Doxil bag, I commented that it was the same color as the Adriamycin I had 8 years ago. I get an echocardiogram and stress test every year. Had to have a chemical stress test this year because my breathlessness had gotten so bad, although I have to say that it's improved after my 4 week chemo holiday. Alas, the holiday is over. Anyway, they haven't found any negative effects YET to my heart from all this poison. I was sure I had congestive heart failure given that, in addition to the breathlessness, I've developed swelling in my legs/ankles/feet which has also improved with the chemo holiday.
Chemo: the gift that keeps on giving!
Wilsie, hugs and prayers going out to you. Seeing your surgery going very well and a smooth recovery.
xoxoxoxoxox
Calico
0 -
Calico, may Doxil be good to you. And Wilsie, may your surgery go smoothly and give you the outcome you want. I hope your children and you have a meaningful conversation about your final wishes.
I know people sometimes focus more on estate and funeral arrangements than on their choices regarding the dying process itself. Today I was talking to a young woman who was struggling with this very issue, and I suggested she talk to her family about love and compassion. Perhaps she, and we, too, can talk about how our loved ones may feel as if they are abandoning us, or betraying us, if they accept that we are dying, and especially if they make choices on our behalf in which life prolonging treatment is no longer pursued. It's important for us to try to prevent them from feeling guilty about such choices--"letting us go"--and we may be able to help them by framing the letting go as an act of love and compassion.
0 -
I read everything but do not post often. Love you ladies. That last post made me wonder....I think I want be at home to die. Easier for the kids to see me and spend time with me, but when things start to turn (what that means/looks like, I don't know) I'm now thinking going to the local hospice house might be best. Give the family a break. Kids don't have to see me when I'm too out of it to know what is going on. My kids are 10 and almost 4. Any experiences or thoughts?
0 -
Damn, Bon, you are qualified to be an end-of-life counselor. Such thoughtful insights,you really think things through so thoroughly, it's amazing.
0 -
Kjones13, Here is the link to a really thoughtful, sensitive article about children being present when someone is dying: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Children+at+the+Bedside+of+a+Dying+Family+Member+or+Friend.aspx
A couple of suggestions: When you choose a hospice provider, try (if at all possible) to choose a provider that offers both home based care and residential care. That way, if you decide to transition from home to residential hospice, you will continue care with the same program, and you will probably be more likely to get chosen for an opening if there is a waiting list for their residential care program. Also, make sure you find out about the hospice team member who is assigned to provide counseling. That team member should have training and experience to meet the needs not only of the person who is dying but also those of the loved ones, including children and adolescents. This is an area where I plan to be very particular. Sometimes there is a chaplain who provides spiritual counseling and another team member, such as a clinical social worker, who provides individual and family counseling, although the two areas often overlap. Be careful of a program that has a chaplain who is designated as the provider for all counseling: some of those chaplains really do not have the expertise to manage a wide range of counseling needs, although some do. If you decide to receive hospice care, identify your concerns about your children immediately to insure that one or more members of the hospice team develop positive relationships with them, which will help them greatly as you decline. Also, many people do not realize that hospice programs offer bereavement services for at least 13 months to family members after a loved one's death, and your children could benefit greatly from that service. A really effective hospice program will allow the bereavement coordinator or one of their bereavement counselors to meet with your children while you are still alive rather than waiting until later, when it might feel very awkward and more uncomfortable for them. I wish you the best in making the right choices for you and for your children.
0 -
Here are some links to articles about what the dying process might look and feel like:
http://www.hospicepatients.org/hospic60.html (a very forthright, list based article)
http://hospicefoundation.org/hfa/media/Files/Hospice_TheDyingProcess_Docutech-READERSPREADS.pdf (a guide directed toward caregivers, but with really good information for all)
http://www.amitabhahospice.org/public/helpful_info/signs_of_dying.php (from a Buddhist perspective)
http://www.cancer.org/treatment/nearingtheendoflife/nearingtheendoflife/nearing-the-end-of-life-physical-symptoms (a guide from the American Cancer Society)
0 -
I absolutely love it when people face issues head on! What a brave and complete way of having this experience! It is after all an experience everyone has and we can, like any other, do it with our heads in the sand or fully embrace it. My overly wise 20 yo says " if you can't get out of it, get into it!". Love you all
0 -
Brenda, thank you for the link from virtual hospice on children, I breifly scanned it and saved it for later. Good for young adults also. Mine are 14 and 10 now.
0 -
Valerie5746- "If you can't get out of it, get into it!" I LOVE that!!! Your son is so wise for 20! Thanks for sharing.
0
