A place to talk death and dying issues
Comments
-
You all have brought up a lot of good points that I need to consider, and I can see how making those decisions known in some way will lighten the load considerably. I think my body will tell me when it is time, but I am pretty early into the stage iv journey. Little by little, I find I can do less and less, and each time it reminds me that I will know when I don't want to be in this body any longer. Of course, then there is this other part of me that tells me that I will be able to do more if I would strengthen my muscles. That would help support my bones. I do hope I give that a try.
0 -
You know I am visiting my Mom who is 75. She was a vibrant strong woman, artistic, very social and independent. She was creative, stubborn and a great Mom to us growing up. She has dementia now. Her entire personality has changed, withdrawn, hardly talks, routine is fixed no changes, doesn't want to do anything. It's like the person I knew is gone. The body is there and who is inside is someone else. It is so bizarre. I am so sad and yet she is alive, sort of. What kind of death is this? It is definitely a kind of dying... morphing into a shell of your former self.
0 -
dementia is a cruel disease. I wonder if the person with dementia feels trapped, or confused and scared. I wonder if the person is still in there, they just can't communicate like they did before. I'm so sorry your mom is going through this. Watching my parents take care of their parents--it's heartbreaking. It is so hard. I think you are right...part of her is gone. It's such a cruel disease...makes the dying and grieving process so long and drawn out. I was relieved in a way when my grandpa died. I knew without a doubt he didn't want to "live" like he was the last yr of his life. I think the only thing I can say is please take care of yourself. Rest. Take breaks. This is hard stuff. Sending love to you rose.
0 -
Good evening Rosevalley, I am so very sorry that your Mother has dementia. My Mother has been in a nursing facility for 7 years this spring with Alzheimer's. A cruel thing to watch, I pray she doesn't know. Mom taught 5th grade for 32 years, and was very crafty, and loved to paint and golf. Now she is unable to do anything, let alone remember anything. I have been the "cookie lady" for 6 years. She only remembers that I feed her cookies, and we have lattes together. I am my brother's sister, but she doesn't know me. Sometimes I see a spark of recognition but as fast as I catch it, it leaves her face. I so want to tell her how much I need her, but that is impossible now. Sad to think that I have been lost in her mind, and I will be lost in life, thank you very much cancer!
0 -
Thank you. This is very depressing. I mean we talk on the phone and things for the short conversations we have, seemed ok. She wasn't spunky and repeated herself, but so what. To see her in person and watch the days go by is just shocking. It suddenly hit me that the person I knew all of my life is history and would not be returning. She lives in her house with my brother. There is someone here, but I do wonder how long this can last. So many questions and issues raised. She could NEVER live alone, too many medical and safety issues. Thanks for listening, nice to know there is plenty of company on this road. To answer you Kjones, I hope she is not aware of what is going on. How awful would it be to know and be able to do nothing to help yourself? To be clueless would be a blessing. Just like cancer, we know we are being consumed and will be taken over eventually; we just never know when.
0 -
I'm sorry to hear about your mom's dementia, Rosevalley. I've not experienced having a loved one with the disease, I can only imagine the difficulties dealing with it.
There is a movie out now, and I just finished the book, called "Still Alice". It is fiction, and tells the story of a woman in her 50s dealing with early onset Alzheimer's disease. I gotta say, I don't read much fiction. But this sounded intriguing. I couldn't put the book down and finished it in less than a day. The movie stars Julianne Moore, and she's already received several awards for her role in it and nominated for an Oscar. If your loved one is dealing with a form of dementia, this may or may not be something you'd want to read or see, but I just thought I'd put it out there.
0 -
Still Alice - excellent book! I fyou have ever known or lived with someone with the disease, it pretty much nails it
0 -
My mom had Alzheimers, she passed away 2 years ago, but has been gone for 6 years now, if you know what I mean. I don't know that I could read that book or see the movie even after this amount of time. My mom would have been horrified to know that she had to wear diapers or that she didn't know her children or her husband of 55 years. From time to time there would be minute glimpses of her former self, but mostly she was just someone else. I mourned my mom many years before she passed, when she finally did, it was a blessing. Unfortunately I was going thru my original diagnosis at the same time as her diagnosis. It was very hard, just when I needed my mom the most, she couldn't be there for herself or for me. GG
0 -
Pain is the hallmark for me. My spirit is strong and I believe it continues (Buddhist) but physical pin tht I intolerable nd suffering seems useless. Hopefully 8 will be able to say good bye to those I love and go with dignity. As someone treated in Boston. VERY interested. Love my Onc... Never believe he wouldn't listen to me. I am not a victim. Well, at least not one picked specifically. Still mad at Monsanto BUT I have loved my life and when I don't and suffer without end.....I believe I will know. Let's talk about the film afterwards....would love to hear!!!!!!!
0 -
Gosh I loved Ireland! Gorgeous! I have looked at your profile. We aren't much different but very different prognosis and tx plans. My mets are all spine. The plan is to strengthen the spine, continue faslodex and go on with my life. If it doesn't work.....there are lots options....if it doesn't work , there are lots of ways to go. sounds like options are not expired but not my business..... Just open to talk 😊no judging, no pushing....just available!
0 -
Hi, Rosevalley, my heart goes out to you. My mother has had dementia for 10 years. At first, she knew what was happening, and that was soooooooo painful for all of us, most of all, herself. Gradually, she became more childlike, and just went with whatever was happening. I live in another state and don't see her very often. When I have, she doesn't express a lot of recognition, smiles sweetly but very non-verbal. My mother was a genealogy hound, and could trace multiple lines back many generations from memory. My sister has the same interest and would talk to my mom about our family history. One time my mom said, "I used to be able to do what you do, but it's all gone." She seemed wan, but resigned to it. The last time I saw her, she realized who I was, put her hands in the prayer position and looked to the skies as in gratefulness to her creator for seeing me. Needless to say, my emotions upon seeing that were so intense, I had to flee the room.
What I pray for is that my mom remains in her happy, childlike state, not grieving for what she has lost. She will be 94 in June and will probably outlive me.
xoxoxoxox
Calico
0 -
I hope you don't mind a story my sister told me of her mother-in-law, Anne, who has Alzheimer's. Anne's been a part of my life, too, as she was often at family gatherings and lives in the same area as my sister and me. Always an attractive woman, cooked, baked, shopped, spent time with her husband and sisters. Always spoke her mind. She was admitted to a nursing home in October and seems to be adjusting to it.
Anne's birthday was January 17. My sister visited her and said, "Anne, it's your birthday! How old are you today?"
Anne said, "32".
My sister asked, "when were you born?"
Anne replied, "January 17, 1931."
My sister said, "Anne, that makes you 84 years old!"
Anne just looked at her and said, "Oh, shit!"It was a cute story. But interesting that Anne remembered her birthday and year correctly.
0 -
There are more than us affected by our humanity.
0 -
Loved that, Mrs M!
0 -
MrsM, thank you for that! My Mom has Alzheimer's, and that is how it is for her and us. She remembers things from years and years ago, but won't know me when she sees me. If I show her my old pictures from when I went to grade school, she will know me. And I am 58. I am so thankful that she doesn't know herself today, and the condition she is in. It is truly heartbreaking for the families of this disease.
0 -
That's a great story Mrs.M! I love it. Seeing the humor helps.
0 -
I have been lurking on this thread for a while now. Haven't wanted to post because while I'm not Stage IV, am dealing with my Mom who is in end-stage Alzheimer's. I am so grateful for all your candor as it has helped me understand the dying and death process in a way I couldn't understand without reading your feelings and thoughts. Mom's health has deteriorated rapidly; she was in skilled nursing since the beginning of November and in constant pain and it was so difficult so see her. My parents have had an amazingly loving relationship and marriage, they've been married for over 61 years and it's really difficult for my Dad to see her so he avoids seeing her and that's only making him feel guilty. I know he needs to deal with the situation in his own way. It was easier when she could recognize us even if she couldn't hold a conversation. Since the beginning of this year, it appears that she's in a sleep-like state and I miss being able to communicate with her. She isn't the same loving Mom I knew and loved. Now that she's in hospice, they have her pretty much sedated and at least I'm glad she's not in so much pain. Hoping that posting here doesn't offend anyone, I just want to express my appreciation that this thread is an open place to deal with a very difficult subject and situation.
0 -
Some of you might appreciate this clear, straightforward article on hospice that ran in today's Washington Post:
http://www.washingtonpost.com/national/health-scie...
Tina
0 -
Hi, 2nd Time, I certainly relate to your pain at having to say good-bye to your mother before she's physically died. Perhaps an actual death is easier for loved ones than this, I don't know. I've thought many times that I lost my mom years ago, even though she's in a nursing home with a heart that doesn't want to stop beating. Only her heart seems to work well, certainly not her cognition any longer. Yes, it's a wrenching experience. Take solace in the fact that your mother has found a measure of peace from her treatment. When my mother knew she was "losing it", but could do nothing to stop it, was the hardest time of all.
Peace and blessings to you,
Calico
0 -
sitting here at treatment listening to my music. It makes me so happy and relaxed. Thinking about what songs I want played at my funeral. I know only you all will understand and not think I am a freak. I really want to have this band and another singer perform...hopefully they won't be on tour! Haha! Have you all heard of the steep canyon rangers? And the main singer/guitar player is married to another artist Shannon whitworth. I love them! Steep canyon rangers got their big break when Steve Martin befriended them and they started recording and touring together. They live in a little town called brevard. Google brevard. It's gorgeous! The land of waterfalls. About 20 minutes from me. Anyway, music is about the closest one can get to my soul. And that's what I want to share with my family and friends. Has anyone else thought about what music, if any, they want played at their funeral or celebration?
0 -
Wow Bon Thanks for those posts. very informative. Darn I still have lot to do,
0 -
0
-
I"m having very sad thoughts tonite...I just so scared about dying...I can't fathom the thought that I won't see my grandson's young men and getting married...what if I don't....I'm sorry it creeps up ever so often about leaving my family and never being on earth anymore...I just can't even picture it....It makes me cry of the thought that I won't be here with my family....OMG...it's crazy...I HATE THIS DISEASE...DARN IT!!
I want to live....till i'm 80 or more...be with my family....i'm so scared of dying....sorry for the sad topic...
0 -
Carla, frequently when I think about dying, I get scared. I'm afraid I won't do it well. I'm kind of appalled that the world will go on without me. I mean, as long as I have been alive, the world has been turning. It's amazing. It really is. After all, I've been severely depressed basically my entire life, and clinically since around 1981. I have not wanted to be alive most of that time. I've thought about it a lot. I've written about it a lot. Every time I had the means to carry through my plans, though, I would get scared and get help. Now, however, there won't be anyone who can keep me alive for one moment more than God has planned for me. I have always been extremely shy. I don't think I have been narcissistic, although perhaps there is a certain amount of narcissism involved with depression. Anyway, I find it curious that I should find it so upsetting that I will be just a blip on the radar of a few people. Somehow, with it being such a major event for me, it should be a major event for others.
0 -
2ntime.around- good article didn't you think? I was so upset when we stopped being able to get ourbig city paper delivered. The I discovered the NY Times on line... saved me from boredom! So many great things to read on all kinds of topics. Love it.
Freebird- I am sorry you have so much mental anxiety about dying and leaving your family. I really blame Christianity for that.The whole hell, give it up and die to be saved and reborn... it's a head trip. Lots of unknowns, will I go to heaven, purgatory.. straight to hell... ??? I grew up with the notions of heaven, hell and keeping the faith/commandments.. then reality set in. (I am not picking on Christianity per se, since other faiths have their baggage too. Just I am familiar with that system.) I watched other people from other faiths live and die. I read what they believed and didn't believe. I realized that our thoughts are products of our culture and society and not universal and "given." Lots of wiggle room, different belief systems and everyone thinks theirs has the "truth". Sure I will miss my family but I accept that everyone checks out. No one gets a rehearsal and practice run, it might be messy, emotional and ragged.. we all wing it. We will get through it, as have all the folks before us.
If you are open to entertaining another perspective, Buddhists don't die so much as change. This makes sense to me since we have been changing constantly since birth.. everyday... until we get old. Change is life. No escaping change ever, so don't fight and roll with it and life will be less painful. Easier said then done, since it just pisses me off that I can't do what I want because of this f***king cancer. I fight it. I hate the rules and BS of oncology and life in Cancerland... I think the paradigm simply sucks as much as cancer. I also know it's the only game in town, play or croak. I find the games played in Cancerland are so fantastically irritating that death is as much a carrot of release - and staying in treatment a punishment and ordeal that I frequently question the sanity of participating. We are by nature hardwired to choose life.
I know after reading the 2 posts above that you are both sad about being forgotten. I would flip that and say isn't that a good thing? I mean you love your family and friends and kids and you want them to move on right? You don't want them to suffer and whine and be miserable. I want my loved ones to live and move on with their lives. I want them to see a photo of us together and smile - good times nice. I want to ditch this cancer body and be one with the forest (my favorite spot) but a beach will do.. I don't care anymore. I am done with the body and that's that. Like a hermit crab leaving an old shell... Change is positive and good. Everyone will be forgotten by time - no exceptions. All the stress over things and belongings and all will vanish. It's really a very "freeing" weight lifting thought. Stop trying to leave things behind, momentos and memorials and let go. I mean do we ever really completely "leave??" Just watch your kids do or say something that has a stamp of yourself all over it and you will realize that you have left lots of yourself all over the place!!! (which can be a little bit scary too...and embarrassing..
)0 -
Good evening Ladies, Thank You for sharing your deepest, and darkest feelings about our lives on this place called Earth. I'm Stage IV and triple negative so I know what my life is, and what it won't be. It will be live in the moment, for it won't be long. How long I don't know, it's not for me to know now. At some time, I like to think it will be clear to me, and I will go as it has been planned for me. I will float on the waves, and tumble on the sand. To be washed out on the waves over and over again.
It is sad to think that I will be leaving others behind, but just maybe I was here long enough to make a difference in someone's life. To make them smile, to open a door, or just comfort the "new girl" at rads on her first day. The day you don't have the answer to the questions, the day you feel sick with fear, the minute in your life when you sit and wait for them to call your name to walk the hall alone on the way to hell. Maybe that was enough for me. I surely count for something, and I hope I have made at least a few people happy along the way.
I know I am scared of the unknown, I am afraid to think about my last day here. What will it be like? Will Jo Ann come to meet me, or will I walk among the clouds calling her name? I held her hand when she died from BC, will she hold her hand out to meet mine? Will we all meet to see how our story ended, or rejoice that we all had our own story to tell? I guess my story will end, I do not have any children to leave behind, or any children to mourn me when my story does end. We all have a story, I just hope that I have done enough to make others remember mine.
But like all of you here, we will fight to add as many chapters as possible!
0 -
I relate so much to what everyone has said. I have no children, but have looked at my cats and wondered how they'll cope without me.
Seriously. Sinbad acts very disturbed when I'm away, or so my husband says. He, on the other hand, is a stoic. Haven't seen him shed one, no, not one single tear in 8 years. He just DOES NOT CRY. So I have to have the emotions for both of us. I take comfort in knowing that the sun will come up every day after I'm gone. The world will keep turning. Maybe my husband will even remarry. I hope so. I truly want everyone to bounce back from my absence as quickly and painlessly as possible. I'm no martyr. I just want them to be happy. I will have shed this genetically defective body, no longer be in pain. End of endless side effects, scans, drama, and suffering. Not a bad gig. Sign me up!
Rosevalley, we've talked about Buddhism before. I'm on board with that. Changing after death versus all other theories just makes logical sense to me, too. I do miss losing my prior capabilities, resent that more than anything else. But I have to admit that, from the beginning, they were going to go away, no matter what I did or what my body did or didn't do. We have an expiration date.
xoxoxooxx and appreciate you all so deeply,
Calico
0 -
Nothing to say.
0 -
I used to believe as you do, Hindsfeet. But having been utterly battered and hurt by "good Christians" and seen the nasty awful things they have done to my kids and myself, made me seriously revisit the faith. Are there good Christian's -sure are! I know some Quaker's who walk the walk and talk the talk and are as genuine as Christ! I have no issue with Christ at all. I have always admired him. I even have lots of gospel on my I-pod as I love pretty much all music that flows from the heart. (That goes for music from Hindu's, Buddhists etc.. I love it all and listen to all.) I just began to question Christianity after having been the victim of it's believers and watching my kids hurt by overt Christian parents. Since I am a firm believer of "you know the tree by it's fruit." I decided that a firm separation from toxic behaviors and beliefs was in order. I know some might believe I have thrown the baby out with the bathwater, but we are much happier now.
My daughter had 2 very close friends who she saw daily and loved. These 2 girls were from intensely Christian families, one Lutheran and the other Evangelical. We poured endless amounts of energy into these friendships and then zap. Both Mom's decided their girls needed only other "Christians" and forbade any further interaction. One kid transfered to a Lutheran school and was only allowed to play with other Lutheran kids.. 3rd graders? Then again in 5th grade... when the Mom moved to an upscale neighborhood and was remodeling her daughter's friends. There was also the sad issue of cancer being a "downer" and no more ruining childhood with sad things. So my daughter had to go. Can you imagine the pain that caused my kid? She asked why? Why would Beth never see me again? Why would Sarah's Mom hate me and not let us visit? We went to the cabin, canoeing, to concerts (I took them fuzzy headed after chemo to a huge concert- Sarah's Mom worked and couldn't be bothered). Then there was the issue of my daughter's friend, a boy who is overtly gay. Picked on and beaten up. They just love each other. I can't tell you what all the good Christian parents had to say about that. This boy is just a wonderful, smart funny, talented delightful kid. My daughter and he went to the prom together! Love it. I was so proud of her that she stood by him through thick and thin and all the nastiness a huge high school could throw at them! Character speaks for itself. Christ said to love everybody no exceptions. My kid's a better Christian then her Christian friends.
Then my retarded autistic deaf child came back from a Christian camp bawling and drew dark sad pictures of the crucified Christ covered in blood and tears. She drew these disturbing dark bloody drawings for weeks! She got that out of Canyonview Christian camp for children?? That's the message they wanted a disabled child to get from summer bible camp???? I freaked. My daughter never went again. When I went to the Monastary at Great Vow on retreat with my kids, they played and were told how wonderful life is. That Buddha loves everyone and being present to life and practicing loving kindness to every creature was possible. The community was open and loving to them, all inclusive. Their faces were full of smiles and calmness. You know the tree by it's fruit. Plus both my adopted kids come from Buddhist countries so it is in keeping with their heritage.
I will not hate anyone. I have not evolved enough to not be disgusted and grumpy with people... maybe next life time I will work on that! I am not a member of any religion, since I want to embrace everything, membership means you shut yourself in. I want an open heart to all. I am a member of humanity, but my heart and fears have been calmed and soothed by the teachings of Buddha.
0 -
Nothing to say...but sorry.
0
