A place to talk death and dying issues
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Hi, sorry I didn't check back in before now. Linda glad it helped. DC197 when things got really bad with Dh's agitation, thankfully he didn't start swinging b/c he was as strong as an ox. The nurses started talking about pre-terminal agitation. I remember pausing and thinking. "WTF --were smack in the middle of choas and the words you are using are saying he's going to die now". I couldn't dwell on it. I had to stay in the moment.
A few here know me and know I like to research things. Pre-terminal agitation never made it to my list. I figured it would just cause to much __________(at a loss for a descriptive word).
Prior to it happening, DH and I had long before illnesses had discussed that we wanted to be home. I'd never heard of the type of story I've told. Again Dc and my DH's were at the far end of the spectrum. I have no clue how many experience what DC and I did. From that perspective as you say Linda, it's better to know. If I were to allow a family member or myself to "come home" , I would pre-plan for what I described. Then things wouldn't get out of control.
I know all here will understand. One thing I've shared with very few. B/c of what I had to do that day. Dear Greg and I never got to say goodbye or I love you.
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Sas, Your description of your husband's time at home after admission to hospice was heartbreaking. You are right in noting that it is difficult to predict exactly what might happen when someone dies at home and what interventions might be needed to manage very distressing symptoms. Fortunately for your husband you knew him well and also had good medical experience, which allowed you to take a primary role in providing his care and to help him achieve 6+ hours of comfort before he died. Unfortunately (to say the least), you were not able to be present for him solely as his wife and to experience what you might have wanted to experience in his last hours, which for most of us would be very difficult and a source of regret. I hope you draw comfort from knowing that your loving presence enveloped him regardless of the circumstances and that you did all you could to help him to find peace and comfort before he died.
I don't presume that the hospice provider didn't have a comfort kit, but anyone who is considering admission to hospice, or their primary caregiver, should ask whether a comfort kit will be made available immediately. A comfort kit includes meds that treat distressing symptoms--such as nausea, vomiting, constipation, pain, anxiety, agitation, seizures, and wet respirations (the "death rattle"). The amount of time that may be involved in obtaining comfort meds, when not already in the home, may make a difference between comfort and suffering and a comfortable, peaceful death and a death of unnecessary suffering. Also, many hospices do not have a protocol for palliative sedation, which is sedation provided in order to address extreme or intolerable suffering, temporarily or until death, and to relieve the patient's awareness of his or her suffering. Some hospice programs provide palliative sedation in the home, others only in an in-patient hospice setting.
Regarding the process of choosing a hospice provider, I would recommend interviewing providers prior to needing one. I would not rely on my MO or other MD to select a hospice provider for me. Recently one of my family members was admitted to hospice, and his MD expressed the plan to refer to the hospice provider that was affiliated with the health care system that employed the MD. That provider was not the best provider to meet my family member's needs. Even though an alternate provider was named as the choice by the caregiver, the MD still made the referral to his system's hospice provider, which resulted in that provider being advised that they were not the provider of choice. Any time a practitioner needs to discuss a hospice referral with a client and/or caregiver, that practitioner should first ask if the client/CG has a preference and, if not, offer information on a variety of providers (if such exists). Of course, the practitioner is free to make a recommendation for a particular provider and to offer the rationale for that recommendation, which many clients and CGs want to hear and may even accept. Ultimately it is the client's and/or caregiver's choice to make.
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Brenda thanks for the kind words
sassy0 -
Bump
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Oh I'm so glad you bumped this thread. I know I'm only a Stage III, but this is a wonderful thread.
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Minus I lost track of bumping thread b/c of thyroidectomy--------Please read from page one many, many woderful suggestions. Bon put a synopsis together on page 25726. sHE SATED SHE WOULD LIKE TO DO ONE FROM THEN TILL NOw---sorry caps on, but worn out.
I've always believed being prepared was the best---poor only kid had to have all paperwork in place before he could go off to college.
Please put in your favs and bump if you've seen a lapse Thanks sassy
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I'm pretty sure I have read this entire thread, although it's been a while. I guess one of my fears is just the actual time when I will be actively dying. Will it be peaceful? Will I freak out because I know that I am dying? When the body shuts down, what happens? Is it painful? Will I be continent (sp)? Will I be on so many meds that I'm loopy and have no idea who my family is? I have never told anybody that these are my fears, but really it is my biggest.
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kjones13, those are some of my concerns too. I guess someone on these boards should be able to answer the questions but I'm not sure who. Somebody, please?
Teri
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Capriness and Kjones -- Like Hopeful -- I helped my wonderful father through his dying process, two years ago -- in Hospice. He died of a stage 4 brain tumor, about 3 months after having "beaten" esophageal cancer. Talk about an emotional roller coaster -- but the year of chemo/radiation and all the doctor appointments gave us the opportunity to comprehend the frailty of Life -- and appreciate even more the time we had together.
The lessons I learned watching that incredible spirit leave this earth have changed me forever, in very positive and strengthening ways. His experience of dying removed all fears I have of my own death. I was diagnosed with breast cancer 6 months after he passed... and the sharing of his last weeks was the biggest gift (of peace and acceptance) he could have possibly given me.
Like Hopeful's mom, my dad was medicated and comfortable/peaceful his last 3-4 days -- but in his case, he was active and able to carry on meaningful conversations up until about 5 days before his death... which took place outside, under the stars, in the Hospice garden, where I "camped" out with him his last three days and nights. He was an avid outdoorsman... and the "Last Campout" seemed a fitting end for a man who taught Boy Scouts for 50 years. I am thrilled that I got to share this with him... and likened it to a mountaineer's base camp -- where he was supported by family and friends (and Hospice) while he gathered strength to make his final ascent.
Other unspoken questions between the lines here on this thread are often "will I be a burden to my family" and "how can I soften the loss for my husband/daughter/son..."
My resounding response to those questions is that Death can be beautiful. To be a care-taker while someone dies (especially when supported by Hospice) is a great honor... and an amazing life-experience. My belief is that the greatest gift you can give to your loved ones is to let them share the experience with you -- all of it -- even the 'less-pretty' parts. Not all your loved-ones are emotionally able or ready to be involved -- just let them know that is OK, too... but this is your last adventure here on Earth, and you invite them to participate at whatever level they are comfortable.
This is a perfect opportunity to have the sorts of conversations you may never have had with your family and friends before. About the afterlife -- does it exist? What might it be like? Is connection/communication from one world to the next possible? (I strongly believe it is -- I often "feel" my father here with me, as do my Mom and sister -- in fact, if you leave your mind open to the possibilities, you can find your deceased loved ones in the sunset -- the sunrise -- the full moon -- the stars... whatever scene or circumstance is special to you, you can use it to remember and commune). I talk to my Dad when I am alone in the car. I "see" him in small co-incidences... (are they random, or is he steering the right people and things my way... is he "influencing" my current thoughts towards the more appropriate goals/actions...?) Well, I like to think so -- and in my case, I feel Dad every time I think of him -- and it always brings a smile to feel him near.
I believe that we are spirit beings who live here on earth (temporarily) in human bodies. When the bodies get worn out -- which will happen to every single person on earth -- our spirits leave the body and go back to the Pure Freedom, The Collective Spirit, Heaven -- however you are most comfortable describing the Indescribable.
These thoughts I have certainly are not "the Truth" -- as none of us living can know for sure. But whatever feelings you have of what happens next physically -- the exploration of what might happen next to the unique energy spark that makes you be "you" -- can introduce an anticipatory excitement -- shift our feelings of Death from those of dread to the idea that this is, indeed, our next Great Adventure.
Capriness and KJones -- If you can shift your thoughts from the fears of the potential physical issues of death to the potential joy you could be experiencing RIGHT NOW with your family-- then it will relieve the anxiety. The best advice anyone ever gave me was "There is always time to worry later -- so why not put it off and spend your energy being happy right now?"
I find the more I practice that concept, the easier it becomes to never quite get around to the worrying-time. We all have more strength and more grace than we know. Remember giving birth? You got through it... and if you got through that you can handle anything!
Lastly, I can't say enough wonderful things about Hospice... and it is FREE. I know that some people choose to die at home -- and for some people that is the best way. But we used a facility (in Kansas City) that was incredibly nice (kind of like a Marriott with hospital beds in the big rooms, as well as a couch, and plenty of room to bring in fold-up beds for family who wanted to stay. The nursing staff was incredibly helpful and supportive, not only to Dad, but to the entire family. For instance, there was always food in the mini-kitchens for use by family members... and I recieved grief counseling for TWO years -- free -- through Hospice.
Using the facility allowed us to use "home" as a respite -- a safe harbor, free of hospital equipment and disruption. At Hopsice Dad always had a nurse right down the hall... and all the possible appropriate equipment/meds/laundry/bed-changing/bathing/toliet-needs -- all handled by highly-trained and caring Hospice staff.
My mom struggled to accept Dad's impending death -- so the way she dealt with it was to visit Hospice as if she were just visiting him in the hospital. Her bubble of "normal home life" went on uninterrupted. My sister and I tag-teamed staying with Dad -- and to us -- those last conversations with him were precious. I sort of wish my mom could have been more involved with Dad's death process -- but she did what she could handle, and no one felt badly that she didn't do more. I only wish she could have shared the experience more, because it was so powerfully positive for me, and I think she denied herself the opportunity to fully share Dad's last gift to us.
Each of us is unique. Your death will be whatever you make it. You can choose to make it a beautiful and mind-expanding experience -- no matter the physical details.
My very best to you all -- and if anyone would like more details (I doubt it, as I already wrote way longer than I meant to, sorry) please PM me.
Linda
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I have witnessed two deaths. My father, who was a very troubled soul. Never really accepted that he was dying. His death was not peaceful. Quick, but not peaceful. It was as if he was fighting it. Even anti-anxiety meds just didn't work. He had colon cancer. I was upset after his death.
My aunt, on the other hand, passed very peacefully. She died of breast cancer. She talked about seeing relatives that had already passed and seemed to go into this "state of acceptance." She told my mom who she wanted there and as soon as they all arrived she let go and passed. She seemed very much in control. Not everything she said made perfect sense to us, but I think she was cognizant enough to know who was there. It really was a beautiful thing and although we were crushed at her passing, there was an amazing peace and calm.
I hope this helps.
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Thanks, ladies, for writing about your experiences with your loved ones who have died. I guess I hope that when it's my time, I could go with a certain grace and acceptance, and that my family would understand and have their own grace and acceptance about it.
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yes, thank you for sharing your very intimate experiences with loved ones. I can understand dying being peaceful. I could see that with my granny. Don't get me wrong, for the most part I'm peaceful and live in the moment...mostly because my kids make me!
but I just wonder about it all. I've always been terrified of dying. I don't know why. Strange I guess. I think that I will be peaceful because I'm sure I will be trying to comfort everyone else during that time...just like I do now. And really, that's all I care about. I just want the ones I love to be ok.0 -
Linda - I don't usually read the death and dying thread. But I must say they way you're post was written has given me a little peace of mind. I'm still scared to linger and struggle, but you have given me hope that there is another way it can happen. Thank you for expressing you thoughts as well. They fall right into line with the way that I feel about the afterlife, and that there is hope to make a passing a beautiful experience if we are lucky enough.
Hugs, Karen
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Karen,
Glad if it helped. Anytime you would like to talk more, please just PM me.
Linda
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Hello, my mom (73 years) passed of bc this past May. I just thought I would share some of the things she "wanted" in case it may help someone else. About 6 weeks before her death, she described her funeral that she wanted. She was angry at herself for not having gone and planned it all herself to spare my brother and me all of that. But she brought out some notes and asked for a closed casket, 2 hour wake followed by a church funeral, burial and repast (yes, all in 1 day). She wanted a blue casket and white flowers only on top. No other flowers. With a beautiful formal photo of her taken some years ago by a photographer. I must say, we received so many comments on mom's "day", most particularly that it was "classy". She would have loved that word.
Mom died at home, in her own bed. I moved into her house and helped my dad care for her for the last 4 weeks of her life. It was my honor and privilege. It was peaceful, quiet, and awesome. God, I loved her and would have done anything - anything- for her. If I did things for her then that maybe seemed hard for a child to do, I can only say that in every action I felt I owed her that and more. The extraordinary love displayed by my dad is something I think about every day. In her last moments, after days in a coma, she opened her eyes, staring straight ahead, and, as if she saw something so clearly, said "mama mama" . Her mom had been deceased for twenty years. Dad stroked her cheek and then she serenely closed her eyes. Having witnessed that, I feel sure that there is something profound beyond all of this. And I am no longer afraid to join her when my time comes. Again, it will be my honor and privilege.
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mk, beautiful, just beautiful description of your mom's last wishes. Thanks for posting. I am very sorry for your loss. God bless.
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Have enjoyed reading these posts over the past few days. I share much of the experiences and feelings expressed here, lost my father 12 years ago and his last days were so much more comfortable than he had been in a long time because of the care he received. He was in a hospice facility.
I still struggle with the conflicting desires to avoid dying by myself and to avoid having anyone see me at my worst, assuming that happens. Interestingly, when I got my stage IV diagnosis, I truly thought I had about a year to live, was completely convinced. Now, just over a year later, I wonder if I might be one of the lucky ones who survive a long time, but still not convinced as currently the disease continues to progress (hoping the new chemo works). But I felt such an urgency to "get loose ends tied up" initially, but now I find myself procrastinating again, as if I expect to be immortal. Life and death are such mysteries, aren't they? So for today, I am just enjoying "being" and am giving thanks for the support and love of my family, regardless of what tomorrow or the next day may bring.
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Hi folks, many dear to me here. Many wonderful words to help Kj. Mkk sorry about the passing of your mom. I know it was a many year struggle. Divine, Linda-n, Linda-R same. I just got dx'd last week with a new cancer--- thyroid. I just posted this a bit ago. A member Bluebird just had brain surgery. She just posted today and doing good. I had my brain tumor out in 2012. I suggested that we write in large letters and bold so Bluebird could read the posts easily. It meant allot to me post- op when folks did that. Allot didn't get how screwed up my vision was. I only say that b/c to rewrite this would take forever.
Ziggy asked what was up for me now? My response to her includes what many of you are saying about an afterlife. I agree. I will unbold it at least, so, it doesn't scream at you, sassy.
----------repost from Insomnia thread from tonight.
ZIGGY, WISHIN AND HOPIN-------HATE TO SAY IT THAT WAY, BUT CONSIDER, IT WAS ON THE PATHOLOGY BIOPSY SPECIMEN DONE LAST JULY(JUNE) AND THE PATHOLOGIST MISSED IT.
THAT'S THE TOUGHY. BETWEEN 8-9 MONTHS MISSED TREATMENT. SERIOUS, IF I HADN'T ASKED FOR THAT BLOOD WORK IN JAN. BOTH DOCS--- ENDOCRINE AND ENT-- WANTED TO CONTINUE WITH THE BX & ULTRASOUND ROUTE.
ONE LOOK AT THE THYROGLOBULIN LEVEL AND NEG AUTO-ANTIBODIES. THEY WERE TRIPPING OVER THEMSELVES TO GET ME INTO THE OPERATING ROOM.
SOMEWHERE IN HERE, THERE IS A PLAN IN GOD'S GOOD WISDOM. I KNOW THERE ARE PEOPLE THAT DON'T BELIEVE. BUT I CAN'T BELIEVE WITH ALL THE UNIQUENESS OF EVERYTHING IN THE UNIVERSE, THAT WHEN LIFE CEASES THAT IT GOES INTO NOTHINGNESS. THERE WOULDN'T BE ANY POINT IN ANY OF ANYTHING.
SO AS A DEAR FRIEND WHO HAS BEEN ON HERCEPTIN SINCE IT WAS INVENTED. WHO METS'D TO THE LIVER>>>THEN REMISSION. SHE THEN METS'D TO LIVER AND LUNG>>>THEN REMISSION. HER STATEMENT WAS "GOD WASN'T DONE WITH HER YET". ONSET OF BC 1999 AND SHE'S STILL GOING.
SO, WHY THINGS HAPPEN UNKNOWN, BUT I'M HERE FOR THE RIDE.
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sas--oh no! I hate to hear that but so glad you did the blood check and thankful they finally found it! So what are the next steps? I never got to say to you how much it meant to me for you to share your story about your dh. You are just so amazing to me. A wealth of knowledge and such a caring soul. Please let us help support you. I will be praying for you!
To all--thank you for sharing your most intamite moments with loved ones. I have heard several accounts of people sitting up and talking after a week of being non-verbal and look around the room and say "wow!" I just have to think they see something incredible! I also want to plan out as much as possible so my husband and parents don't have to do that...I just keep putting it off.
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Kj, please, I'm okay, my point was there must be something beyond us. Sometimes it's awfully hard to understand. Sometimes for those of us that believe, we vere away. DH's scenario was the far end of the extreme. it was very hard to put it here b/c I didn't want to scare anyone. But in knowing, you can address it way before anything happens.
What has been described here by others is more the normal passing. In a prior time death was more calmly accepted as a part of life. Prior to the 1960's, the onset of the death process was generally very short. The primary exception that I observed in that period of time was the CVA(cerebral vascular Accident--stroke). CVA patients lived for many years with with varying degrees of disability---mostly very negative. But stroke management has made leaps and bounds in prevention of devastating outcomes with prevention, recognition, and early intervention at onset of symptoms.
Overall, medicine and interventions improved. The outcome was that we prolonged the process of dying. We found ways to keep people alive longer and longer. Medicines and tubes etc. It is normal for the dying person so stop eating and drinking slowly as the time comes. What we did was find ways to interfere with the process with the use of IV's and feeding tubes.
Hospice as we know it today was introduced in England in the 1970's. It evolved. They were the first to introduce the use of heavy dose narcotics for the control of pain. When I say heavy dose, it was a cocktail. Here in this country USA, the use of narcotics the way they were being used in England was considered very radical. Acceptance here was slow. Too slow, but it happened.
Pain management has evolved most dramatically across the whole spectrum of patient care as a result of these beginnings. Other societies, cultures managed things differently than we civilized folks did. But we have come closer to being more human in our approach to the care of the dying than we have for a very long time.
Thinking about how you want your life to end is important to plan now. Then you can put those thoughts away and enjoy your life. That's one of the beauties of Bon's Bag. It's prepared hanging on a hook. Ready for use. All the things to worry about are in the bag. Frees you from worry--these thing have been thought of, and are ready.
Start reading page 25-26 first, Bon did a synopsis of page 1-25. Perpare a Kj's Bag as much as you can--get it out of the way and add your worries as the last item to be put into the bag.
Then go back to page one. There are many precious ideas on these pages as well as practical. Use what you like and bypass what you don't. Each to our own likes and dislikes. i.e some are wonderful scrapbookers. I appreciate the skill, but never has been something I have ever done.
Then when you continue after pg 26 make notes of the things you want to add to what you want to do. Work on one at a time.
Bon is a wonderful writer, but while her interest in doing a synopsis of the new pages is there. She has said it is too hard the last time I talked with her b/c of her own changing needs.
Thanks for your prayers quite appreciated. Time will make the plan known
L&H&P's sassy
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Thank you sas, for explaining that the end of life issues that happened to your dh and my aunt are not the norm. In fact, my mom's death was very much the opposite.
She had stomach cancer, and received hospice care in my home. She had a very hard time swallowing food because her complete stomach had been removed, but other than that she was quite lucid until the evening before her death. I had to give her morphine suppositories (this was in 1987) which kept her comfortable. When my dh came home that evening, she sat up and said, "Hi, Rich" in the loudest, clearest voice she had in days.
The next morning, I could see that something had changed dramatically. Her eyes were wide open and she seemed to be staring far off, above my head. I said a few prayers over her, and she mumbled something which was not clear to me, but she appeared to be smiling. Whoever she saw seemed to please her very much, and it left a warm feeling in my heart. To me, that was proof that there is something beyond life on earth. I know that not everyone has the same beliefs, but I do, and it's comforting for me.
~~Diane
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disclaimer--I'm weird--
But in thinking about planning my service, I want to have a video of pictures from my life and people in it. And I want lots of music. And I feel like I need to make mention of all the people who were important to me, but that's impossible and I'll forget people and end up hurting feelings. Yea, I think I just want pictures and music. I am a Christian but I AM NOT HAVING AN ALTER CALL!!!!! Not going to do that to my captured audience. I am just thinking outloud.
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KJ - I'm weird, too. And I know what you mean about forgetting someone. I almost am thinking of doing a video obit. I already wrote the paper one, but you know, that is so, like, yesterday. (I'm kidding of course) ((Can you imagine when they get hologram technology down??))
My personal plan is whatever I can do for my husband so that he does't have to, the better I will feel.
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Mzmerz, that is how I feel about making things easier for those left behind if possible. Most days I try to do a few things to "tidy up loose ends" but some days I get so tired and think "well, it won't be MY problem then!" and smirk to myself if it's something I don't really want to do anyway!
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linda worried about you how ru today?0 -
Blondie, not sure which Linda you are worried about - I think there are a few of us. In any case, I am doing better today, got my chemo yesterday and am doing pretty well with it this time. Main thing is I have a "partial bowel obstruction" which means liquid diet, and it is hard enough for me to get any protein in my diet as it is, so this is just another little aggravation to deal with. But, as they say, "this too, shall pass" and I certainly hope so!!!
I was truly feeling pretty rotten for a couple of days with this thing, but at least we know what we are dealing with now, so I will hang in there for a bit.Keeping all of you in my heart today, hoping you all find a moment of peace to just rest in for a bit.
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Linda it is you....what is the bowel obstruction do they know? What kinda of chemo?0 -
Chemo is now gemzar. Some ladies get it with carboplatin, but I am just getting it by itself. I also get Xgeva for bone mets. Thinking back, I suspect the bowel obstruction is due to pain meds - narcotics really do cause constipation, and although I have not really had much of a problem, it apparently caused some slowdown in my small intestine, so the stuff did not even make it to the large bowel, hence "partial" obstruction. I was quite relieved to realize that this lump that I have been feeling in my belly is NOT cancer but just that I am FOS (full of sh*t)! One of the other ladies on several of the threads has warned people over and over and over about this SE, and I personally taught pharmacy students pain management course and that was one of the SEs I emphasized to THEM, and yet here I am, dealing with it myself! Now isn't that a kick? In any case, I am not dying yet (despite how I felt Thursday morning!) and it is NOT more cancer and I am tolerating the gemzar (and hoping it is working), and it is a beautiful day, so all in all, I'm doin' pretty well! Thanks so much for checking in on me! And I hope you are doing well today also.
Now that I realize I'm not yet ready to kick the bucket, I STILL have to revise my will! It was on my task list last month and the month before .... but at least I got my taxes done!!! Yippee!
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Linda I did gemsar by it self about 2 years ago...don't remember side effects so they must have not been that bad, didn't work was on it about 8 months, good luck with it...thanks for the explaination...hope you are ok...
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Okay, my sisters and I were talking today, covering all subjects. One sister mentioned a really 'out-there' obituary that was recently in the paper. I'm going to paste some of it here. In earlier posts on this thread, I mentioned that I don't care for the overly-flowery type obits. Here's a perfect example of one that's way over the top:
On Wednesday, the Earth Mother Gaia inhaled deeply, bringing "John Doe" forth from the Universe into the loving hearts of his parents.
He was a golden light, shy but full of curiosity and promise, who struggled to find his place in the material world, meaning in the chaos, and comfort in his surroundings. He had an intelligent mind; inexhaustible creativity; and an unquenchable thirst for knowledge.
His travels took him to live in West Virginia, Pennsylvania, Colorado, Maryland and Ohio where he tried his hand at many talents: bus boy /dishwasher, construction, roofing, press mechanic, automotive technician, marine maintenance mechanic, aeronautical maintenance technician, grocery stockman, heavy equipment operation, and even a little farming.
He thrilled to ride motocross and go mudding, dreamed of flying, enjoyed hunting, fishing, and screening independent films. He loved listening to music, tinkering with guitars, writing letters, lists and poetry.
He held a unique view of the workings of the world, and was impatient for the rest of us to embrace his vision.
In March of this year, Gaia slowly exhaled, returning Mark to the Universe, where he is free to explore the greatest of mysteries and engage in endless debates. He was loved and is sadly missed by his extended family and friends.
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