Jump to content

End-of-Life Conversations: Patients & Caregivers


Recommended Posts

Hi, everyone.

I just posted an article in "The Path Less Traveled" forum about a recent study showing the benefits of "end of life" conversations to both patients and caregivers--the patients during their final days; and the caregivers both during the final days and after the patient's death (grieving).

I can't speak for all lung cancer patients, but for myself, one of the most awful aspects of this dread disease is knowing the grief my loved ones will experience after I'm gone and my helplessness to ease their pain.

The article is posted at http://www.lungevity.org/l_community/viewtopic.php?t=37736 if any of you are interested.

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

Link to comment
Share on other sites

Hi Carole,

Thanks for posting this. It makes sense to me that actually having this conversation would be of emotional benefit for all parties involved. It is the idea of starting that conversation that i find very stressful and very hard to approach. What can you say to start such a conversation? The only thing that I can think of is, I love you and I will miss not having you with me. It makes me cry to think about it. But, I do think it's a good idea. Hope I have the strength to do it.

Love,

Gail

Link to comment
Share on other sites

Carol,

I agree with your statement about the grief our loved ones will experience after we're gone. But I do know they will in time be okay too.

I have to say, I think this is a very important conversation that in MY opinion I think everyone should have have this talk in there lifetime.

I have had this talk more then once, because of all the heart surgeries I have gone through. It's not an easy talk, but it is an important talk.

I have found most caregivers, or family members don't want to have this talk. I learned with my mom and my sister that the "talk" was very helpful to everyone after they had passed. It DID help with our grieving process and it did make things a little softer for all of us left behind. (for now). My sister made the talk more of a celebration rather then the end of the line kind of talk. And she always made mention that she would see us later. Kind of like she was going on vacation. She was SO good at that talk and how she made us all feel.

Link to comment
Share on other sites

Hi, Gail.

In my case, I've been pretty open with my family since the get go (having read the lung cancer statistics), but once I went onto palliative care last year, then my care team (particularly the social worker, who was also an LCSW) was available to me and my family as a resource.

Mind you, I asked a lot of questions (and many patients and caregivers don't, not wanting to think about it), but she definintely had the answers and those helped me to be not only more open and direct with my family, but also to have a better idea of what I want and what I feel.

Does it still look like Hank will be coming home soon? Because as soon as that's arranged, you'll have the hospice SW to help you with all this (both knowledge-wise and emotionally). She will then be able to talk with both you and Hank separately and together and help "grease the skids" to make it all easier.

From my point of view as a patient, I think the saddest thing of all would be if I couldn't say goodbye to my family--nor them to me--because none of us were admitting that I was going anywhere.

As to you having the strength, Gail, there's not a doubt in my mind that you have enough for you and Hank both. You are a rock!

Love,

Carole

Link to comment
Share on other sites

Connie: My sister made the talk more of a celebration rather then the end of the line kind of talk. And she always made mention that she would see us later. Kind of like she was going on vacation. She was SO good at that talk and how she made us all feel.

Hi, Connie.

My sister died in a car accident. She never got to say goodbye to us and we never got to say goodbye to her, whereas I've had some wonderful conversations with my family during the 17 months since my diagnosis--and fully expect to have more.

So far those moments have been more about what has been than what's to come; i.e., sharing memories of times gone by, how much those times meant to us and how much we have meant to each other.

I have, however, also talked to them about how rewarding my life has been and how even though I'd prefer to have another twenty years (and don't count me out yet!), it's not like I haven't lived life to the fullest so how can I complain about it being "cut short" (there are nonagenarians who haven't had as much fun as I've managed in 2/3 the time)?

In a way, I think it's a blessing to be given "notice" of one's impending death (as versus being drop kicked by that proverbial bus). Dying is, after all, the final adventure and oh, how very much I've learned... and much of it from all the wonderful new friends I've made on this board, both fellow lung cancer patients/survivors and their family members.

As I've written on more than one occasion, I am one lucky woman, and that's what I want my family and friends to remember after I'm gone.

Carole

Although we walk in the rain, my heart feels sunny inside...--Neil Young

Link to comment
Share on other sites

Carole, you continue to blow me away! You are such a caring individual!

I have what I think is a funny story...

Larry is a few years older than me. He has had two previous cancers. He does not come from a line of long-lived males. So...

I was telling Larry how I want my funeral. I went into elaborate detail. I got all done and he asked me why I was telling him all of this. "You know, chances are, I am going to die before you." I responded that you never know. I could get hit by a bus. He said and I quote, "Yeah, but I don't know any bus drivers."

Bah Dah Boom! Rim Shot!

Link to comment
Share on other sites

I got nothin on this one..

DEb and I had a sort of end of discussion. It was kinda strange at the time. She said she wanted to be cremated to save money adn I said You get a proper funeral. I won that one.

She told me she was tired of fighting at this point and was just tired of all teh treatments. We had tried 5 different combos + Radiation. HTings were not good but not bad so we thought.

The last thing in the conversation that she said was," iF I see the light I am going to it, But I will not turn and look for the light! It has to be in front not behind so.............

Jan 20 2006 was rushed to hospital with respiratory problems. Assisted Breathing Stayed in and was concious until 3 Am 23 Of Jan 2006.

Saw the light!!!!!! :wink::)

Link to comment
Share on other sites

Lynn: "I could get hit by a bus."

Larry: "Yeah, but I don't know any bus drivers."

Oh, Lynn! I am ROFLMAO (figuratively speaking :D). What a great comeback! :lol::lol::lol:

And, of course, all that laughing out loud led me to research end-of-life issues and humour, which led to my posting a second "end of life" research report, which is now at http://lungevity.org/l_community/viewtopic.php?p=362621

And since there are other studies showing that Laughter increases Quality of Life, which in turn increases Survival Rates (about which I will also be posting soon), thanks for the laugh, Lynn! :lol:

Carole

Laughter may not always add years to your life, but it will add life to your years.—Author unknown

Link to comment
Share on other sites

RandyW: She told me she was tired of fighting at this point and was just tired of all teh treatments.

Randy: Do you think it helped you afterward, knowing that Deb was tired and that she was ready to "see the light" when the time came? (as versus your not having discussed the possibility of her dying at all)

Carole

Link to comment
Share on other sites

Carole and Gail, that was one of my favorite "Larry" stories,which happened well before he was diagnosed with lung cancer. Over the years, many of my friends have told me "Larry" jokes, meaning that they knew he would appreciate them. And they were right, he always did.

Our life has been filled with love and laughter, and tears and heartache, if truth be told. But we feel so blessed to have been given the gift of time. Larry and I have said all the things that need to be said. Now, we just cherish the time we have left together.

Link to comment
Share on other sites

I wanted to add to this discussion. When Alan was 1st diagnosed both avoided the subject of "what could" happen. Eventually Alan and I had a heart to heart discussion about how he would "want" to die. I thank God we did have this talk. I knew exactly what Alan wanted and did everything in my power to fulfill his final wishes. If at all possible Alan wanted to die at home, in his own living room with his family with him. I have incrediable peace of mind know that is exactly how Alan went home to His God. In his living room with me holding his hand and kissing his forehead.

My uncle died instantly behind the wheel of his car some 20 years ago. After his death I often wondered what would be better, to die instantly with no pain or knowledge of what was happening to you, or die from an illness that could be long drawn out. After my experiences with Alan's illness I would take the 2nd choice. Alan and I were able to create some wonderful memories in his final years. Alan was able to make amends to the people he felt mending fences was needed. Alan fulfilled the dream of building a home with his brothers (His brother now lives in that home). The last words Alan spoke to me and me to him were "I love you". Although an incredible void is left in my heart and soul, I would not change one moment of these past 3.5 years. Alan was able to do what very few people will do. He died on his terms.

Thank you for letting me give my opinion on this difficult, but very important subject.

Continued prayers to us all.

Link to comment
Share on other sites

Since Mark's diagnosis in January, he has many times told me how sorry he is for me having to take care of him like this. My response, I am grateful for every day I get to take care of him - he could have been gone in an instant, hit by a bus! heart attack, all kinds of ways but we have been given this extra time and for that I am definitely grateful.

Link to comment
Share on other sites

Wow, what an important subject.

Bill shared quite freely about things (even on this board), but I didn't as much. I was taking cues from him, yet some time after he passed I wished I had been able to guide us into a more 2-way open dialog. At the time, hearing me express any "acceptance" of the situation or talk about it from my perspective was too much I think. But he needed me to listen to him, which of course I did. He understood much of what I was going through -- that I know. If I'm being completely honest, I wish I had had the chance to share some specific things with him too.

I later read the famous book, "On Death and Dying" by Elizabeth Kubler Ross. Although some of the book is opinion, I learned a lot that I wish I had known during Bill's illness. If you're not familiar with it, she and her students interview countless patients and caregivers, and help them into honest dialog. It's an old book, but the subject is timeless. She prints the actual transcripts. I shed quite a few tears reading that book, because it opened my eyes to things Bill might have been feeling that I hadn't a clue about.

We had amazingly close moments in those last days. At the very end, it was beautiful, even though he was in the hospital (which niether of us wanted). He expressed excitement -- said, "it's party time!" Told me and his sister how much he loved us, squeezed each of our hands, prayed with me, etc. That is a most precious memory to me that I wouldn't trade.

Link to comment
Share on other sites

Thanks so much to all of you for sharing.

My own end of life is approaching and I'm now having more intense end of life conversations with my own family members and friends, and reading about your experiences is more helpful and supportive than you'll ever know.

I'll be posting more on my current condition later, but for now I am

Carole the Queen of Procrastination :D

Link to comment
Share on other sites

What an important topic! Our family is very open about end-of-life discussions, and we've had several, but even so, I find it EXTREMELY difficult to start one. Really, the only reliable way I've found to start that sort of talk is to hitchhike off of someone else's situation (we've been going to a lot of funerals lately) and let it transition into our own. We try to include everyone, because those 30- and 40-somethings are not immune -- they could be involved in a serious accident.

Aloha,

Ned

Link to comment
Share on other sites

I've experienced both an extended illness with my dad and a sudden death with my mom...I'm not sure which has been worse and I could have never been fully prepared for either. With my dad's death came shock and defeat...to the very end, we held hope firmly in both hands. It wasn't denial, just a thread of hope that got us thru to the next day. When that was gone, there was simply sadness and defeat.

With my mom, it was shock and awe. More intense grief and anger but the loss and sadness are the same.

The ironic part was, we knew my dad's prognosis, yet he never wanted to talk about death or dying. He had told us all our lives he loved us, proved it in his everyday actions before he was sick, and held no regrets to amend....so he never spoke of dying. In the beginning of his dx., all the Logistics and paperwork was taken care of swiftly and never spoken of again. Once when he was extremely dehydrated and hospitalized for 5 days for low counts and dehydration, he spoke 5 words- "I don't want to die." Those words still haunt my dreams some nights. (He did bounce back from that hospital stay)

In the end he died with grace and dignity and even in a coma, he smiled at us as he took his last breath. That beautiful smile after 9 days of immobility gave us so much comfort that he was indeed going to a better place, That's all he needed. He gave us one precious gift before he died. We didn't have any stroll down memory lane or long conversartions...and I feel like that was enough. That was what he was capable of.

Now my mom on the other hand, the "healthy one" who had passed three annual physicals/health checks just two weeks before she had a stroke and died!! used to talk about death and dying all the time. She would talk about what she wanted and what I needed to do if she wasn't around and show me things (how to cook a dish or tell me an old story from her childhood) and when I asked why she wanted to do this or show me that, she'd say- because I'm not always going to be around...... I treasure all of that now that she is gone. Especially since she was taken so suddenly from me.

I think it comes down to what the patient/person talking about end of life issues is comfortable with. If you have your "house" in order (ie, paperwork, etc..) if you have and show love- if you have no regrets- whatever else you say or do is up to you.

i don't think as a caregiver I could have impressed on my dad to "open" up more or talk about when he is gone or the dying process to satisfy or comfort myself. It was his life and his choice and I followed his cues.

Of course with my parents, their differences in opening up could have been due to the fact that my mom was female and my dad was a "man's man"...and that's a sexist remark I know, but boy sometimes that's just true. lol

Great topic. I hope everyone, healthy or not, always says what's in their hearts and has these very important conversations....you never know about that Bus!

Link to comment
Share on other sites

Rod was so like your dad, Katie. He showed love and also told us he loved us. We didn't talk about if/when he would die. We were so deeply in denial, I worked at denial toward the end tho, I knew deep inside after visiting the boards and "studying" LC that he was awful sick and I would lose him. He totally believed he would make it. But we were both so shocked when the onc. said "no more chemo". The only things we said pretty much were: Me, "Don't leave me". Rod "I'll try my best not to" , "I'm sorry I did this to you" and "I brought this on myself". He did say he didn't want to live with that kind of pain. When he saw Jesus, or God or Heaven and Jeff and I were with him, what a glorius moment. I do wish we were a couple who could have talked about it. I would but he just wasn't that kind of person. I try to put the questions I had/have away.

Barb

Link to comment
Share on other sites

Hi Carole,

I had read this thread earlier, when it was first posted, but didn't know what to say.

Since then, I have had some valuable thinking time.

Bill and I have talked about death, and had made our funeral arrangements a few years ago, prior to any diagnoses, even before the colon cancer.

We talked, but not specifically, nor addressing actual feelings.

It was more a putting in place the final necessities that were important at the end of life.

Bill's older brother died suddenly last November, and we were a bit surprised, but he was 82, and it seemed a plausible outcome for a man who had lived a rich and full life (although I am sure his wife and children were devastated, nonetheless) and we were all extremely saddened to see an "era" go.

This past week has been an eye opener for us - for our entire family. Not one of us was without shock at my brother's death. It was the proverbial "bus."

When a guest at the wake suggested to another, "It was a good way to go," that person told me, "There IS no good way to go."

I realized that not all of us have come to any kind of terms with death - for some - not even its eventuality.

He sounded so angry. It was more than my kid brother's demise. It seemed that there was a fright in his eyes.

Without being morbid, Bill and I bounced thoughts off one another using my brother's funeral as part of the discussion.

What did we think? What do we now think of Bill's (or my) eventual death. It does happen to us all - quickly or otherwise.

I can see that it will be an ongoing conversation at various intervals.

Thank you, Carole, for providing this opportunity to give expression to a subject that certainly is not a favorite, but can be approached even bit-by-bit.

Maybe, in small chunks, the whole thing will become a somewhat-integral part of our existence.

Barbara

Link to comment
Share on other sites

Thank you, Barb, for once again providing a new and different perspective.

As you know, I lost my own sister to a car accident when she was only 20 years old. She never got to say good-bye to us nor we to her. Likewise, she was deprived of the full and rewarding life that I have experienced (including the downs as well as the ups).

In retrospect (and especially after reading what you wrote), I think her demise had an enormous effect on my general attitude toward both life and death--hopefully a healthy one, but most certainly one that has helped me maintain my spirits rather than spiraling into a severe depression (actually, my "sick" sense of humor has probably helped also :)).

As I have written before, some of my family members still have problems with my openness and frankness, but I continue to believe that it will hold them in good stead after I'm gone, and in the meantime, I feel strongly that it is a key factor in my being able to appreciate the time I have left (no matter how long or how short and irrespective of cancer diagnosis).

Thanks again,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

Link to comment
Share on other sites

Carole,

First of all , I would like to thank you for starting this thread. I'm sure there are probably many who, like myself, have gained more than I am able to contribute to this discussion. It has always been my belief that the entire death process is made more bearable if it can be openly discussed , like any other part of life. Ideally, I think it would help if people were to make it a part of discussions with family and friends whether there is an immediate health crisis or not. We KNOW that we are ALL going to die, but none of us knows when or how.

In my personal experience with Mike and his battle with cancer, we never had "the" discussion. It was more of a gradual thing. From the very beginning of his recurrence (stage IV) , Mike was told he was terminal and we had to accept that. He was fighting in the hopes that he could become stable long enough for the proverbial "silver bullet".. that was our hope. In Mike's case, he became more spirtual. He spent a lot of time thinking and praying and he put his fate in God's hands. We made wills, and living will's together. It was through discussions of the living will that I knew how he perceived his death and what he wanted. The week before he died , he asked me to gather friends and family to come see him and to tell them "the end is near". It was hard. The night before he died , he sat up in his hospital bed and he told everyone " I'm not afraid to die.. he held up his index and middle fingers together as one and said " God and I are like that" .. he said " all I ask is that you take care of Sue". This was said to family in the room . It's hard to write about this now, but it gives me tremendous comfort to this day. My husband was one hell of a man.. so strong, so courageous, and so unselfish. It's as though he planned his last days and minutes . As he passed he mouthed "I love you "and squeezed the hands of my son and I.

Thanks, Carole. Death is a difficult subject , but being able to talk about it is important. Hope I didn't get too carried away. Tears here.

Love,

Sue

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.