When is the best time to have an important conversation with a dying parent or relative? "Now," says David Kuhl, a palliative care doctor who studied the most important wishes of people with terminal illnesses for his book What Dying People Want.
When Kuhl was a newlywed at the bedside of his dying father-in-law, before he became a doctor, he and his wife missed that opportunity. "The hospital staff said to us, 'Why don't you go home? He could be here for a long, long, long time,'" he recalls. "Now I know that, by the way he was breathing, they knew it wouldn't be a long, long, long time. I wish somebody had said, 'We're not sure whether it will be a day or two, or even just hours. So if there's anything you want to say to him, or if you want to just be with him or hold him, now would be the time.'"
After recording the stories of 21 dying people for his book -- and sitting beside thousands of others through his clinical work -- Kuhl found that connecting deeply with loved ones, particularly children, is one of the most important things to people at this stage of life. "It's the responsibility of the parent to make sure their child is heard and seen when they are young," Kuhl says. "And as parents grow old, they want to be heard and seen. People would say to me after we'd spend time together, 'I only wish I had told this story to my children, because they don't really know me and I don't know them. And I'd like to hear their stories, too.'"
Even children who spend a lot of time with dying parents often find it difficult to talk to them on an other than "mundane, day- to-day basis," says Kuhl. And terminal illness can exacerbate this because parents and children often try to hide the truth about the illness from each other, further hampering the possibility of an honest discussion. "We start taking care of each other through a conspiracy of silence," Kuhl says, "and that doesn't serve us well."
If it feels awkward to start a conversation, he says to begin by admitting that. "Say 'Mom (or Dad), I really want to know you better and I'm not even sure how to begin,'" Kuhl says. Then start at the beginning, talking about her early childhood and working through her life and up to broader questions such as: "What's been most meaningful in your life? What's been most challenging? What are you sorry about? What was the funniest stuff? When did you have the most fun in your life?"
Ultimately, these intimate conversations are important for children as well as parents, Kuhl found. "My sense is that when children don't have those conversations with their parents, their grief will be greater after the parent has died. My rule of thumb is: If it's worth doing when someone has six months of life left, it's worth doing today."
Read the fulll interview with David Kuhl.
To all of you on this forum, I send you my love and prayers. I know I can't help but the tears that are streaming down my face, I hope and pray that it shows all of you how much my heart goes out to all of you. I want you to know I am crying a river of tears for everyone on this forum and your loved ones. My Mom was dying and she wanted to die in her own house. She was a nurse and made me promise that she would be home when she passed. I remember sitting on her bed and I saw her life pass in front of me. I know that sounds crazy. It was like watching a movie. Then I realized that I was the one who had to tell her that if she wanted to go home she could. I was an only child and I had a son. So I said to my Mom, "Mom do you want to go home and she nodded her precious head which was saying yes. Then I said "If you want to go home Mom your grandson and I would be okay. She nodded her head and gave me such a beautiful smile. Then a couple days later she went home. The one thing she kept saying was "Who is that man sitting on my file cabinet". The file cabinet was in her bedroom. I could not see this man but she did. Now I know it was an "Angel" on her file cabinet waiting to take her home. I hope this helps all of you in some way. From my heart to yours, I am sending all of you and your love ones a sweet and precious hug. Love Always! LeeLee
Please take you ego out of your loved one's process. As a Hospice worker, I have witnessed many deaths and none of them were unattended. The departing souls would watch for, or actually speak to "someone" in the room, not seen by us. In the end, letting go of this life is like taking off a too-tight shoe. Please don't allow the person you love to waste time on regrets - theirs or yours. In the end, it matters only what you have given to the world and the love you were able to share. Religion, sexual preference(s), income levels, nothing matters to the dying. Their eyes are already focused on going home and continuing to experience love. Be their living legacies and honor them by loving them back all the days of YOUR life.
Being a newly diagnosed dying parent of 4 sons, aged 16, 14, 11, and 9, I have been reading these comments looking for some peace. I have a tough battle ahead of me. The docs don't know how much time I have. I have agreed to live my life, what is left with the time that I do have, with my kids as much as I can. I have prepared them, again, as much as I can. Trying to make arrangements for them has been hard on me. They just don't want to spend a lot of time with me right now. My 16 year old posted on facebook that he isn't ready to take care of his brothers, and that he doesn't want to grow up. The boys don't really want to talk about what is going to happen. Therapy is a good idea, and I will start them soon, but how do you break through to them and explain that I need help to do this? They choose not to spend time with me, when this is all they are going to get.... they choose to play around with their friends, instead of helping each other, or cleaning? Yet, they are quick to blame me for their choices.... I have placed everything pretty much, in God's hands.... may they all find peace....
Hugs chevyhops, SPTJ, GrampaJoe
Prayers chateauoh
My son was born with sickle cell anemia. He lived a beautiful life, though riddled with pain and numerous hospitalizations. He died at the young age of 22, a senior in college, and in retrospect,ready and comfortable with leaving this life. He laughed often, excelled in all he attempted and resisted bitterness. I saw him tiring of fighting the ravages of his disease, but I could or would not accept it. I responded with more specialists, more treatments..more, more, more. He died in an ICU of a large medical center. Shortly before his passing he said to us, his parents, "Dad I love you," and "Momma, thank you for being so good to me...and he closed his eyes. He remained on a respirator overnight , but never showed any oher signs of being present. What would I have done differently?.....I THINK I woud have honored his wishes to cease with the ongoing search for someone, something to ease his physical suffering and catapult him into a healthy existence, void of the physical pain, the hospitalizations, and the uncertainty that plagued the last year of is life. I wish that we had just taken the time to be a family..maybe to travel , or to just sit and talk. I dont know....I wished I had let him tell me what he wanted...and stopped the maddening and exhausting efforts to prolong the life of a beautiful, mature young man who realized and accepted that it was his time to go and was hanging on waiting for his "momma" to accept it and Be at Peace! I learned a lot from my precious son and I thank God for Him... Blessed Be the Name of the Lord.!!!!!!
Hugs GrampaJoe
Such sad stories, but I guess we all have our own stuggles, loss and turmoil in this lifetime. I am my mom's caretaker at the moment, as she is 73 years old, and has almost died more than once. She will not tell me or write her last wishes and I have been discussing the matter with her since she had an anryesm surgery last year. My mom is so depressed, scared and nervous; But always has been. And I am becoming more depressed. My family is falling apart, I lost my job of which I could not keep anyway, and this has put much stress on my daughter and husband. But I have to keep it together. My stress level is making my medical problems worse, and have to hear about how miserable she is everyday. I try to point out blessings; Even a new, bright sunshiny day, food to eat and a means to get where we need to go. I will pray for those who have sick, dying loved ones and just know that God has a plan for each and every one of us. Change is inevitable but temporary anyway. With love, leslie B.
PEACE & strength I hope to send you.
After taking care of my mom for nine years it is hard seeing her in this stage of dying. has been like this for two months already. we are on hospice and they say just let it take its course. hard seeing her talking to people that are not here and wanting her youngest daughter delia; and that is me she is talking about I think i am ready but when time comes it will surely change. she comes and goes out of these stages so dont knowwhat is going on. please someone let me know if it is normal
Hugs Cajun Lady, wish, GrampaJoe
Prayers wish
My father in law just died a little over an hour ago.. He had alz and metastatic melanoma that metasized into his brain, lungs and lymph glands. This was a very strong man, worked very hard all his life and was an excellent provider to his family. He wasn't rich but if his children or grand children asked him for a couple of dollars, he would hand over his wallat and say, 'take whatever you need.> He worked long hard hours but not for personal gain, he did it in order to provide for his loved ones. He was most certainly not a quitter by anyones imagination. Tonight I had been reading in a pamphlet that hospice provided. The pamphlet discribed what kinds of things to expect during the months, weeks, days and hours before death. Tonight I had left my reading glasses in his bedroom ( he was bed bound already), and I needed my glasses in order to read some more of the hospice literature. Coincidentally enough when I went in his room for my glasses, I started seeing the signs I'd just read about...the signs that death was approaching in a matter of minutes. His breathing was shallow but rapid, parts of his body had taken on a mottled appearance, his feet was turning a purple-ish black color, and his eyes (which I had been staying closed) were opening. I had just moments before read that these were signs that death was only moments away. So for some reason, I was afraid to leave him, and yet afraid to stay, afraid to leave, afraid to stay. Finally, a family friend (who is a doctor of pharmacology) suggested that since my father in law had lived as a proud and strong man; he may have been waiting to be alone for his last breath because of the possibility that he may not have wanted us to witness it. So everyone left the room for about 10 minutes and sure enough when my husband ventured back to his dad's bedroom,he had expired. This was a rather new concept to me, as you always hear that most people don't want to die alone, but apparently the personality of the person must be taken into consideration as well. Someone whose personality has a dignified and protective basis toward his love ones, may very well may not want them there to see him/her take the last breath, and was something I had never considered. I also thought that many people may not consider this and I wanted to take this time to pass this bit of information along for other's in similar situations to give thought to the personality of the dying person and their wishes may be to take the last breath alone with dignity and peace, of course he had known that we had all been gathered around him for the passed week, taking care of him, visiting him, talking to him, loving him. But once the signs of immenant death approaches give thought to the person who is passing, and realize that some people certainly may not want to die all alone, but some very well may wait until they "are" alone to feel comfortable enough to breath their last. It was certainly something I would NEVER had considered unless the family friend came and suggested that it might be the case with our loved one, having said these things please know that some people who are in the process of dying very well may be afraid to pass while alone, but it is certainly worth considering that other's may rather be alone for that last moment., I know I rambled trying to get this point across with as much understanding as I possibly could considering that I am currently in a grieving state at this very moment; and I hope that I have conveyed my meaning with empathy and compassion. It was something that I certainly learned this very night, and something I had never heard expressed as a possibility until tonight. For my father in law, it turns out it seemed to be true, that he waited until we were all out of the room before he would allow himself to "let go". Thanks for listening.
Hugs sanchez23, Cajun Lady, wish, peaceandlove
Experiencing the death of many loved ones has really impressed upon me the importance of taking photos/videos. It's really all you have left of the person in the end.
My father's health is failing rapidly and I want his stories survive. My Dad taped conversations he had with his father and i think they were a comfort to him. I wonder if and when I should propose this "tradition" to him. He is in a great deal of discomfort and I feel that it may be to much to ask of him.
In her last months, Mom had a tough time forgiving herself for words and actions over the years, many years. At first I just listened, then I realized all Mom needed to hear was "Mom, you did the best you could at the time. If God can forgive you, certainly you can forgive yourself." Big attitude change, from work being a hardship to work being a place where she met her best friend; from Mom's siblings being selfish and vengeful to them living their own lives as they wished. Mom's misdeeds became laughable and teachable, to both of us. I miss my Mama.
Hugs wish
My husband's doctor did not tell us that he was dying. It wasn't until they wanted to move him to ICU that a nurse spoke up and remarked that he probably wouldnt make the move. That's when I demanded that they acknowledge his wishes in his living will. They kept him in his room, removed all devices and we sat there and watched him for 2 hours as he died. It would have been so good to know he was terminal so that I could get 3 of his kids home from out of town. As it was I had only one child with me and the other 3 still feel guilty about not being there when their father died. I am now 89 and in relative good helth but I have informed my doctors that should I ever become terminal I want hospice. I do not want to die in one of my kids homes or a hospital. We keep talking and I hope they know everything there is to know about me. When my time comes, let my spirit go and be at peace
I wish I had read this before my father passed away, but am thankful I am reading it now as my mother is still alive, and it will be good for me to use now.
Yes, talk with them and get to know about your dying parent. My father is 92 and has prostate cancer and Alzheimer's. I am always asking him about his child hood and how it was in the old days and he has such interesting stories. I really enjoy hearing them over and over. Ask about funny things that happened in their life. My father always says "if I had my life to live over I wouldn't change a thing." And he grew up very poor but yet had such fun times and a very hard worker. When he passes I will have many good memories and stories to remember and stories about my grandparents and g. grandparents. So a genealogy. Many cam corder moves of him to watch and pictures to look at over and over. I had to be the one to push to get things together. Pick a plot and get his thoughts of what he wants done for funeral. We picked out the plot together and I cried as we did that. He explained he wanted a nice funeral. I am taking care of him and doing all for him. I can be at peace knowing I did all to help him before he passes and I hear his phone conversations telling all that I am good to him and do everything for him so I know he is ok with all. He asked and I explained his health problems. I told him I am doing everything I can and getting doctors to help in every way that I can. So he feels ok with all. He knows I am doing my best to help him. But some will not be this way as I also have a brother that is dying of cancer. He refuses to talk about it or face it. But I am there and take care of him also and trying to make a break through to get him talking. Just do your best , that's all you can do but think and do before they are gone so you also can be at peace knowing you did all you could to help. I feel and hope as my brother gets more to the end that he will open up. He holds all in, says nothing. I will wait till the time is right and tell him it will help him to let thoughts and feeling out before he goes.
Hugs wish
Prayers stashlover
Thank you for your information our uncle is dying from prostate cancer and i am caring for him at home. We are enjoying my time and could use any information to help our children through this last sage.
Hi, I am so tired. Tired if watching my Lover suffer from HIV since 1985. It is amazing how someone can survive with help from others. I should know. Anyway this is my point, I am looking for help here, My lover is Jeffrey Scott Sommerfeld Sr. He is 45 and lives here in MD. This hurts Jeff the most. I'd love to explain but no time, suffice to say, If this were a film, It would win best Picture.lol, unfortunately so. I am a lover of film and Jeff's story, would be a huge success. But as it stands now, all Jeff wants is either to see some of the World, he says there is so much to see here in America he doesn't, necessarily need to travel out of Country. We both want to see California for so, so many reasons, lol, everything from trying to possibly move there and Hollywood and all the other things in LA and San Fran, and Monteray, etc, etc, etc... . I take care of him when and if i need to (which is becoming more frequent but he is doing OK). I love him so, so much, we have been together since 1992, June 8th, 1992. The 1st night I met him, so, so handsome, and I was in a gay bar, (we don't go to bars anymore, lol, been 12 years or more)anyway, I was standing there and I see the phone booth, all I could see was the lower half of the guy, and boy, i thought, if he looks as good as the rest, than, I may ask for a number, etc. and he walked away from booth and I saw him full view, Wow I thought, better than I expected!lol,I sent my friend, Phyllis, down to ask if he'd like to meet me, well she came back and said he'd be right up. we met and since then, we have grown into a very loving couple. I would gladly trade places with him, I do not have HIV, and we have lived and shared everything together(safely) for 18 years. We both live on S.S.I. I cannot work due to my back, severe problems there, and I also have cancer.and other issues but still get around fine, etc...I wish for Jeff & I (since we cannot get married due to so many reasons, including going against God's will, and being in love with one man and being faithful, etc, I hope counts.. I mean if everyone in History, NEVER was Gay, the World would have already been over populated...) I wish we can see some things,here in America, any sites you can recommend we try, we can prove everything we are telling you (of course, but what kind of a person would lie about such things? people I would be terrified of, lol) And WHY is the West Coast so...laid back, no hassles from simple things, a liberal cool hippie., BUT the East Coast it's like a mean old un-understanding mean old Judgmental redneck. LOL,anyway, PLEASE look into our files, whatever you can do... I need and am reaching out here and I am so tired of reaching....Jeff needs this bad I love him and his life was filled with abuse and being used due to his stepfather a Baltimore City police officer who abused his power during the 70's, he would sdrink on the job, and when he got home Jeffs Mom would scream and yell out in pain, Jeff said once he was 8 and was told in school that very day about 911 and if any bad things happen call right away, etc. So, A HUGE fight broke out between Step dad & his Mom, he saw his mother being drug done steps BY HER HAIR! and her eye was beaten so badly, it was almost inside her head... WELL when the cops showed up he cried and boo hewed and Jeff's Mom yelled at Jeff etc. And his Step dad treated him bad ever since... What is wrong with people?. I need a goal. I have none. I would gladly trade places with jeff meaning his sickness, and work? I would if I could BUT due to my Back, which is so bad..lol, constant nagging throbbing pain..like a toothache in my back, lol.. Anyway My adolescence being so messed up due to extream childhood trauma - abuse, physical, sexual and mental,( sorry don't mean to bring it up, yet it is always with me, and at one time, back when I 1st met Jeff, he was the 1st I told of about how mean my Pops was to me, and when i was 7 I was raped by a neighbor and NOTHING was done about it due to my MOMMY'S dumb church would have found out and Lord how mercy , how could we ever face anyone???? that was always her reason, and IF my Dad knew he would have shot Jr. Dillon.Oh, he was the 10th grader from down south, who had his way with me and afterward s as I was bleeding and crying he threatened my life, my cat & dog and my family, he kept at me for 3 years until my family moved us to N.C in 1976...) I digressed again but anger took over, sorry. I don't "get" people anyway. they are so cruel. Most are anyway, for some reason, I was raised by "hippie types, my folks were OLD when I was born anyway, In 1965 my Mom had me at 42 years of age, and in 4 months she turned 43. I was a quiet, good kid, not hyper, minded my Mom & Pop, because if I didn't, My Dad would beat me like you wished you were dead! The pain ands sores would last for a month sometimes...and I still have scars... He, as he aged, grew much more docile. Anyway, We are dying and are asking for any sites that can help us, i.e. DOES ANYONE CARE ANYWHERE AT ALL ABOUT US TWO HUMAN BEINGS WHO CARE ABOUT YOU, AND EVERYONE.WE ARE EMPATHETIC...HA! I AM EMPATHY... SO is Jeffrey... I give to my neighbors, etc, i give give and give and don't complain, BUT for some reason i woke up today and saw a commercial and it started me off. WHY is it everyone but us, even the evil users of others, etc, get everything they want. I would love to eat, and have a PC that I didn't have to pay 198.00 a month for 14 months due to a jerk I felt sorry for, stayed here and ordered credit cards in my name. AND I LEARN Damn it. I LEARNED THAT I CANNOT HELP BUT hand someone half of anything I have because I want to share and my stupid brain doesn't think greedy, sorry it just doesn't.We need to catch a break here, we do not rob, steal, lie, cheat, connive, etc, etc. BUT 3 years ago I was almost murdered in my home by a home invasion, one man and he was in a gang, called "The Crypts" very prevalent here in Edgewood MD. So are "The Bloods" But it was a Crypts member and the two detectives one named officer Workman or Goodman, anyway, they told me it was a gang initiation, I am gay(but not a flamer) and a lot of folks know I am gay. Anyway he was supposed to kill me, I was being strangled and my 26 year best friend Corey, (who just started dating a African American girl who used him, who had "The Crypts" tattooed on her hand)was here with her and they came into the room and Corey went to help me and she stpped him! She was watching me die with a look on her very, very pretty face that said, "wow this is neat, and I am supposed to watch... etc.."By the time Corey looked at her like, FU, I has struggled enough that I bit his fingertips and he let go, BIG MISTAKE, I flipped him over, took his gun away from him and hit him three or four times and he threw me off him and ran out my door... Leaving me to confront Dee, that was her name...She said she had no time to react, and was thinking of what to do. huh. really? Well the cops didn't believe you and neither did I. Corey chose you, and I lost a friend forever because in May Corey was killed due to a car accident. He wasn't a drinker, and he and her had a kid and I hadn't spoken to them since then anyway, 3 years, and his Mom told me they were arguing over me... that hurt me so deeply. But I suppose you can tell from this run on sentence i need help, I want to be clean, healthier environment for Jeff and me, and a life...lol, Any websites that you can recommend, I promise to keep it one paragraph.lol. BUT I need Lysol, Or store brand, of cleaner, and rubbing alchaol, and cleaning supplies, lol I'll do the work, but some comet one can, one can of lysol, etc, etc..,. is this possible? I know NO ONE will ever help us with a wish that would be for a new PC or a new life...lol, anyway, you'll find we don't ever ask for help your the 1st, we don't know where to go, no one seems to care, but I can do something, something out there for a person to help them, and maybe earn some cleaning stuff and make a wish for a new PC or a trip.... HA! in my dreams right?: thats where they will stay I suppose... people are broke these days and even if I promised or signed a promissory note it could only be for 50 a month, i only make 674 a month from s.s.I. I have rent, Gas & electric, telephone, cable and internet bill, and a couple others, I am in need of aid. Something, I cannot do what others can, I cannot go get jobs most people can, I am not educated because of school was torture for me, TORTURE. Ahh sorry I bothered you, I guess I'll send this, oh well... worse that'll happen is what is happening now...nada. Peace and love to you & yours...Randy & Jeff randypillion@comcast.net
Hugs stashlover, sanchez23, ED-T
Prayers YorkshireLass, gypsygirl, ateea
Talking to a dying parents is never easy. One approach that works best is to begin dialogue from a proactive perspective -- maybe you could talk to your parent about pre-planning his or her end of life arrangements, suggesting that it is the responsible thing to do both for themselves and for the family. Have them think about what kind of service they'd prefer, or perhaps what kind of cemetery they want to be buried in. These topics get the conversation started, but in a delicate way.