A place to talk death and dying issues
Comments
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Bon, thanks for the link to Dolly's Shine On. For some reason my computer won't load it, but I looked up the lyrics and they are beautiful. I'm going to do a web search and see if I can find the audio to it somewhere to listen to it.
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Oh, wow, Bon. That video worked and why I'm saying 'oh wow' is because DH and I just took a three day trip to Nashville a week ago (had never been there) and one thing we did was tour Ryman Auditorium...that's where Tammy's memorial was held....I hadn't realized it while touring! Ryman was the favorite thing DH and I saw while there (had a great time). We both said Ryman Auditorium was like walking on hallowed ground.
The song is beautiful to listen to, Dolly's voice is incredible.
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On the topic of death, I had a home visit from one of the nurses from the hospice homecare team this week. She asked me where I wanted to die and I told her I wanted to die in the hospice. I don't want to make my dying more difficult and horrible for me, my DH and sons. However she said the policy is to keep one at home as long as possible. But I don't want to be nursed by my beloved family of men. I feel I want to retain some sense of dignity and personal privacy and I don't want them to remember the awfulness of having to nurse me.
She suggested that I make a memory box for each of my three sons and write letters to them to be read on their wedding days. I found it incredibly upsetting to contemplate doing this and also I wondered if they would find it morbid to be addressed from beyond the grave as it were. What do you guys think? Did anyone here do this? Also I can't remember their individual childhoods - my memory is shot.
It breaks my heart me to think I won't be here when my boys get married, have their own children, all the ordinary life events I took for granted. They are adults I know but always my boys. I can't bear to think I won't see my 21 year old at the age his brothers are now and so on. I wish the older two were married. I worry how they will cope when I'm gone. I can hardly imagine how heartbreaking it is for women with younger children.
I can't stop crying since she called. One bit of me just wants to give up now and get it over with. I don't have a bucket list. I want my simple, ordinary life back. I'm frightened as she seemed so knowing, as if I was living in a fantasy land, and that my death is imminent. For some reason what she said has touched something deep within me and I am feeling devastated.
I know that we are all in the same boat and that it's just as hard for you all. I admire you ladies for being so positive and upbeat and I don't mean to bring you down but how do you cope with all this? I don't know if I should ask for anti-depressants or not. I'm on a lot of pain meds and I don't want to be 'out of it' any more than I need to be.
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On the topic of death, I had a home visit from one of the nurses from the hospice homecare team this week. She asked me where I wanted to die and I told her I wanted to die in the hospice. I don't want to make my dying more difficult and horrible for me, my DH and sons. However she said the policy is to keep one at home as long as possible. But I don't want to be nursed by my beloved family of men. I feel I want to retain some sense of dignity and personal privacy and I don't want them to remember the awfulness of having to nurse me.
She suggested that I make a memory box for each of my three sons and write letters to them to be read on their wedding days. I found it incredibly upsetting to contemplate doing this and also I wondered if they would find it morbid to be addressed from beyond the grave as it were. What do you guys think? Did anyone here do this? Also I can't remember their individual childhoods - my memory is shot.
It breaks my heart me to think I won't be here when my boys get married, have their own children, all the ordinary life events I took for granted. They are adults I know but always my boys. I can't bear to think I won't see my 21 year old at the age his brothers are now and so on. I wish the older two were married. I worry how they will cope when I'm gone. I can hardly imagine how heartbreaking it is for women with younger children.
I can't stop crying since she called. One bit of me just wants to give up now and get it over with. I don't have a bucket list. I want my simple, ordinary life back. I'm frightened as she seemed so knowing, as if I was living in a fantasy land, and that my death is imminent. For some reason what she said has touched something deep within me and I am feeling devastated.
I know that we are all in the same boat and that it's just as hard for you all. I admire you ladies for being so positive and upbeat and I don't mean to bring you down but how do you cope with all this? I don't know if I should ask for anti-depressants or not. I'm on a lot of pain meds and I don't want to be 'out of it' any more than I need to be.
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Hugs to you Acibheann!!! You are a very strong, and amazing woman.
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Aoibheann, I try to be positive and upbeat in front of people, but I really don't feel that way at all. I can understand why talking to the hospice nurse made you feel more depressed. It made dying much more real. I agree with you about where to die. I don't want family members or friends nursing me at the end. I want paid professionals--not in a hospital, but either in a hospice or at home. As far as the letters, I want to write them to my husband, daughters, and grand kids. I don't think it's morbid. I would have liked letters from my parents and grandparents. I hope you can start feeling better about things soon. I don't think any of us should feel guilty about being unhappy, though.
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It certainly wouldn't hurt to discuss all of this with your mo to see if s/he's on the same page as the hospice nurse and at least pick up a prescription for an anti-anxiety or anti-depressant drug. I used valium (diazapam) when I was first diagnosed and found it useful before doctors' visits and important discussions. It seemed to help me smooth out the emotional roller coaster.
I have two adult unmarried sons and a DH who I hate to leave. DH has been wonderful with drainage tubes and breast massage after reconstruction, but I'd certainly prefer some outside help when it comes down to earthier bodily functions. I think it's a question of what you're comfortable with when it comes to that and to post-mortem letters. It seems that the nurse is following a standard script that might not be a good fit for you. I'd rather talk to my family now than leave them with a letter for a future event that may not even come to pass. Would they then feel guilty for disappointing you if one of them never married?
<<Hugs>> and wishes for peace and tranquility.
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Regarding the nurse's suggestion that you make a keepsake box for each of your sons with letters to be opened for events like wedding day, etc.....
That may not be appropriate for some people. Early in my Stage IV journey I saw a news program where a young woman was intereviewed on what it was like to grow up without her mother and how the letters her mother had left affected her. She had VERY ambivilent thoughts about those letters. They grew to be a burden to her where every milestone was accompanied with an obligation to read the letters and reflect upon the loss of her mother. On the other hand, some people might have really appreciated the letters. If your sons are old enough you could ask them how they feel about it.
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On the letter thing, I thought about doing something like that, but not marked letters for certain events. I don't want my kids to spend one minute of what is their happiest times, such as their wedding day, focusing on their dead mother. That is not what that day is supposed to be about.
I think I am going to leave them each a box with pictures of us and reminders of special little things that are just for me and that specific child. And a letter for each of them in the box that will remind them of how much I love them and always will. Simple things that, I hope, will remind them they are so very much loved their entire lives.
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Stormynyte, I also plan to leave just one letter for each person, not a series. Like you, I just want to tell them how happy they made me, how proud of them I am, and how much I love them.
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I don't think I will write letters. I have one son, a step son with a wife and two small children and my husband. I have a $3 spiral notebook...cost that much because I got one with a pretty cover...and I wrote some words to my son. I certainly haven't filled up the notebook. It's not something that would be read for a specific milestone like a wedding or 30th birthday or something. It's just some overall general things I put in there about how much I love him, ect. I would like to leave something similar for my husband.
I have kept a journal for over 10 years. I don't write in it every day. I have written less in it since the bc diagnosis. Now I have a monthly calendar on my dresser and will try to write a small sentence or two about what I did with husband or son or some other hightlight for each day. It's simpler, and maybe if they looked back on it,they would see how much fun and even just average stuff we did over time.
Some people can write those letter, but it's just not suited to me.
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Another option could be one of those pre-made 'Mother/Father Remembers' or "Grandmother/Grandfather Remembers' books, with questions about family history, how people met, fun vacations, holiday traditions etc., plus places for thoughts on life & wisdom a person would like to pass on. I got a book for the grandparents, for myself & for DH when DS was little. My mom and I filled in every blank in our books, my dad filled in the stuff he felt comfortable with and left other parts blank, as did my MIL. They are really fun read & not morbid at all.
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Yes, Ruth, I agree. I actually have a two of those kinds of books. Like your dad, I filled out the stuff I felt comfortable with.
I like to write when I am in the mood but I'm not always in the mood. What I like to do is take pictures. I hope that the photos I take will be nice reminders of the times we shared. Over the weekend, I got a few photos of my grandkids at the playground, in the pool, at the ice cream stand. When DH and I take a small trip, I always get a few photos of the landmarks and such that we see (a favorite: photo of us two in front of the iconic Las Vegas sign). Photos are my favorite souvenir. They make me happy. These days, I do more of what makes me happy, and not what I feel 'obligated' to do. The writing and leaving letters can make me feel bogged down unless I do it when the urge strikes me. I spent too much of my life doing stuff I 'had' to do.
Enough of that! I don't think I have to cover all the bases for all my loved ones to help them through their grief even when I am gone! Certainly, we have all loved deeply and widely, and hopefully we have helped our loved ones develop the life skills they'll need to get them through grief and tragedy. I'm not going to burden myself with all of that now, and I don't think they want me to spend my time doing it, either.
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A few years ago I received a letter from the husband of my best friend from college; he described the last few years in terms of her suffering, and I was shocked. You would never know it from the annual newsletter she would send out, full of news, activities, hope, and she did mention pain issues, but at the time I had no idea how much it was affecting her. Receiving that letter broke my heart, but at least gave me closure - if he had not cared enough to send a note to each of her friends, I would never have known what happened to her. I plan to write a letter, much like my annual newsletter, just to let friends know how much they have meant to me, and to briefly let them know what happened to me (most of them really don't know much about my daily life now as they are scattered across the country - we have moved so much, I tend to have a couple friends in each location that I keep in touch with), and envelopes already addressed. DH is not one to send letters, but he will send them for me if I have the envelopes ready to go.
I am not sure about leaving letters for children on special occasions. I think that depends a lot on the relationship you have with them and how you think they will perceive your intent.
I did an interview with my father before he died, using a lot of the questions some of those memories books use, recorded it on a little voice recorder. I asked him about his childhood, friends, school, family, meeting my mom, army & war experiences (he wouldn't talk much about that!) and I learned a lot, and was able to share it with my siblings and mom. Having a chat with family members that you record might be a great gift, sort of in the mode of "Story Board" that NPR does periodically. I like Ruthbru's idea a lot.
Haven't been posting much lately - am bandaged most of day for LE and typing is cumbersome - fingers fumble on keys, have lots of typos that my type A and perfectionistic self just can't let slide, so it takes more time. In fact, it is really slowing me down in getting those loose ends taken care of - financial planning issues has been on the top of my task list for several weeks, just can't easily fumble through the papers and files, and don't trust many others to do it for me.
Thinking often of you ladies here, and grateful for this thread!!!0 -
About 25 years ago I lost a cousin suddenly to a heart attack. He was 31 years old and like a brother to me, and he left a wife and 2 children, ages 1 and 2. My dad had a movie camera when I was young (no video yet), and had recorded many family events and vacations which my cousin was in. I transferred clips of the movies onto another tape, and, since there was no sound, I wrote a letter to his children describing what was in each scene. His wife viewed the tape and cried and said it was a most beautiful gift for her children so they could get to know their dad in later years.
I think leaving photos and videos is a great way to leave some happy memories behind without "letters from the grave". Of course, it's only my opinion and each person has a right to decide what's right for his/her family.
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Well, I forgot about the video stuff. This summer, I am in the process of transferring my VHS tapes on to DVDs. I'd say it's going to cost a small fortune, but the reality is that it's going to cost a fortune! I'm going to do it a few tapes at a time.
I took lots of videos starting from when my son was born through the years until he graduated high school. If I don't transfer that stuff now, it probably won't ever get switched. Lots of memories there, tho. By about the time DS graduated, everyone was filming stuff on their iphones and cameras and not so much using the camcorders anymore. But I have many tapes of all kinds of things for him or any other family to look back on if they want to.
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I was into scrapbooking in a big way when my kids were young and have done 3 huge albums for each of them. I will never finish as their lives just keep going and going .., thank God. BUT, they will have those that are complete and tons of pictures I've taken over the years. I'm not into writing letters for occasions yet to come ... I'm sure they will all find a moment to think of me on those special days without a physical reminder from me. I am not sure if the hospice nurse was following a script or just thought she was being helpful. I think the physical mementos/memories we leave for our families is deeply personal and there is not a right or wrong way to do it.
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I have a rather morbid question that's been playing on my mind for quite some time (I haven't posted on this thread before but always read).
When the time comes to go to hospice what sort of mind frame will I be in?
I.E. will I know what's going on? I keep thinking how the hell do I get in the car one day to go there & know I'll never be coming home......or will I not know what's going on?
It's something that has really been bothering me as I know very little about what happens when the time comes.
I've mentioned it to my hubby & bless him, he said I don't have to go but I don't want him to have the memory of me dead in our bed....
Karen xxx0 -
My mum wrote a letter to me and my two brothers and gave them to us just before she went to hospice with bc. She told us we could open them whenever we wanted. I chose to wait until a year after she died, and I don't know when my brothers opened theirs.
But this avoids the whole beyond the grave thing, since my mother gave them to me while still alive, and I could have chosen to open it then and discuss it with her if I wanted to.
I have a five year old daughter and I really want to write her some letters but it is too hard at the moment.0 -
Karen,
I have thought about that question, too, but in reality each of us is different and we won't really know until we are close to dying. For me, my children are grown and married, so I don't think I will fight death when it comes. I cared for my mother with hospice in my home. She had stomach cancer and had a great deal of pain, but she was lucid until the very end. We prayed together, and I comforted her as best I could, and she went peacefully.
I have a feeling that our bodies will tell us when the end is near. Usually, we will sleep a lot, and have little desire to eat. I find comfort in my Faith, and know that this is my path to follow, and pray that I will have the strength to accept it. Of course, those with young children will have a tough time letting go, and my heart breaks for them.
It's a choice we all must make .... I hope it's a very long time before you have to make that choice.
(((hugs)))
Diane
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Amen Diane!! I am trying to get my family ready for the inevitable. They don't want to hear it but I talk about it anyway. I'm not very good at putting things in writing, so I hope they remember when my time comes.
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Kazzie I hope you don't mind me stepping in to answer your question as I am not stage IV but I went through this with my mother when she had brain cancer. I think its very important to have a conversation with your onc about end of life issues. Some oncologists feel like its giving up to acknowledge that its time to bring in hospice so its important to tell him how you want him to discuss these issues. My mother's oncologist had a reputation for never "giving up" so I told him point blank that we needed him to bring up end of life issues when he felt the treatments were unlikely to have a benefit. I was concerned that since I'm not a doctor and my mother was having cognitive issues that he would simply keep suggesting another thing to try and we would have no idea how to evaluate the options. Many patients want that so its important to express what you want. Ultimately it was clear to me when to call hospice and I didn't need to be told.
Which brings up my second point which is err on the side of speaking with hospice sooner rather than later. You can speak with them any time, even when you aren't ready to use their services, just to understand the process and learn what they can do. In fact, if you are having anxiety about this thats what you should do, call hospice and raise your concerns directly with them. I regret not calling in hospice sooner for my mother because there are services she could have benefitted from but she was simply too sick for when we finally brought them in. I just didn't know about the range of what they had to offer. In many areas you can even use the services of hospice while still pursuing active treatment.
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Thanks DC197 & Member of the team.....it's such an emotional issue & acting on it does make it all seem so much more real. I did at one point ask my onc about contacting Palliative Care & he said I didn't need to do that yet. I think his way of thinking is to concentrate on living rather dying but we all think about 'the end' & what will be happening. I might broach the subject again, as I will need a referral or some advice on who to contact, as I think it will give me some kind of peace to know things will be 'ok''!!!
I also want to leave my children (all adults) a memory box with photos & memories but can't bring myself to get started.....again it makes it all seem too real....sigh!
Thanks again & (((hugs))) to all.
Karen xx0 -
BUMP
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Hello all! My mother is 58 and currently in hospice care with her passing imminent. Her wishes were for her body to be donated to science for cancer research. She also had an adverse effect from Zometa, which caused her to have osteonecrosis of the jaw. When this happened, there was very little info in literature, and we were asked to report her subsequent jaw issues to the FDA. So, research of this condition would have been relevant as well. We had her set up for a full body donation, and this afternoon found out that they don't do cancer research at all, but more like anatomical forensics. Though this is vital, it wasn't what she intended her body to be used for. We withdrew from that program, and have almost exhausted all known avenues today to try and find any places that support cancer research from the bodies donated. Does anyone have experience of this or know of any specific to cancer? Thanks in advance.
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Kazzie, I am not sure what the difference between palliative care and hospice is in Australia, but in the US there IS a difference. ANYONE with a life-altering illness should be offered palliative care, which is simply symptom management, taking into the patient's values and condition. You can still go for curative intent, but pain, emotional, and other issues are included in the treatment plan, not just treatment for the disease. I also asked for palliative care referral from my PCP and MO, both said the same thing at the time - you don't need it yet - but the thing was, that was EXACTLY what I needed in order to continue the treatment they were recommending. So I got a new PCP who is also palliative care specialist, got a new MO, and have advanced to stage IV because I didn't trust my first team. Hospice is used when active treatment is no longer an option or desirable, like the last 6 months of life you might not want to do more chemo if it's not going to do much good anyway. Best wishes - you need to find the right team to address YOUR needs, not the needs of the medical establishment and their egos.
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Kazzie, I was just looking at the list of Forums, and there is a Pallative care-Hospice site. Maybe there is some information there that you can use.
Good luck
Lynne
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Kazzie/Karen, Much of the research supports the idea that MDs, as a general rule, are not only notoriously awful at predicting how much of a life span a person with a life limiting illness might have remaining, but also at having end of life conversations early enough in a person's life in order to achieve the best possible impact. Some doctors believe that talking about end of life care deprives a person of needed hope, to which I say several things: 1) I no longer have hope for a cure, just for improved quality of life for as long as I happen to be able (or choose) to live; 2) Those of us living with cancer often find that hope revolves around other things beside trying to eke out the longest quantity of life possible (especially when that starts to involved significantly dimished quality of life); 3) I am the one who gets to decide what I hope for, whether it be a peaceful death, living the remaining weeks or months of life without being under the influence of harsh interventions, and enjoying time with family and friends in the process of saying "goodbye."
More and more cancer care facilities are utilizing palliative care when a cancer diagnosis is made--period. Palliative care can be available to assist not only with symptom management during aggressive treatment but also with comfort care at end of life; what's more a palliative care team can develop a relationship over time with you such that the team knows more and more about your end of life wishes and can advocate for you with your other care providers, and family/support network as needed, to insure that your wishes are heard and respected. And it's a shame that many people, even MDs (!), still think of hospice care when people talk of palliative care. Hospice care is just part of the palliative care continuum.
If you have not already done so, I would recommend that you complete your advance directive, then discuss it with your MO, which might be an easier way to broach the topic of arranging a palliative care consult. And remember, you have the right to choose palliative care to become involved; you are not just asking for a "favor"! You deserve to have peace of mind!
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Hi folks haven't been here in a while. Just today I was suggesting to someone on another thread to get a Palliative Care Specialist referral. Even though I explained the difference, my sense of it is she saw the word and went right to the care of her mother in hospice There are several pieces and I'm going to transfer them here by reposting. There may be a pearl or two that hasn't been mention
sheilarepost:15 hours ago, edited 15 hours ago
Mary, your question is absolutely reasonable. Many good suggestions given. I have been a pain control advocate my entire career b/c post polio pain has been with me, basically, my entire life. Through the issues created by my treatments and surgery since 2009, and what Dh went through with his terminal Lymphoma starting just 3 months behind me in 2009, my learning has taken on a different dimension.
You may or may not of read my past postings about pain control. You are no where in the range of taking too much medicine. But you state your pain is not controlled. Secondly , you recognize that in the future your needs will change. I suggest that you have a consultation with a Palliative Care Specialist(PCS). This is a fairly new subspecialty. It arose out of the recognition that many of the concepts of Hospice could be applied to long term chronic illnesses. One aspect of Hospice Specialists was/is pain control. We also have Pain management Specialist. PCS combines the strengths of the other two specialties.
It seems as if our MO's and surgeons believe oxycodone is the only pain control drug out there. It's not. The who, what, when, where, why of drugs for you, I think could be better answered by a Palliative Care Specialist. In a do over it is what I would have done for DH. EDIT: AND myself. EDIT: DUH, I should do it now.
15 hours ago, edited 15 hours ago
Mary, are you sure we are talking apples to apples. In Hospice the term palliative care was used to describe care for decades. But the terms usage in regard to a Palliative Care Speciallist is different. Reread my post where it said the concepts of Hospice were seen to be able to be applied to patients with long term chronic illnesses. More specifically long term chronic illnesses that are predictably terminal. WEll, we are all terminal. The difference with a standard Pain Management Specialist is that they don't THINK in terms of eventual mortality. They just think pain. Few if any look at the rest of the patient.
THE PCS thinks in term of how to best manage the total patient with a long term chronic illness. They are well schooled in all the drugs. They also look at other quality of life issues. Your specific question though deals with pain control. I think and I could be wrong, if you were to see a PCS, a full evaluation of where you are now in your life, would lead to other drug choices and perhaps suggestions on quality of life issues, you hadn't even considered.
The extension of this is that over time as your needs change, you have a very specifically trained specialist to help you alter your plan. That would give me a definite degree of comfort. Losely similar to my wish that I want my Saint Primary Care Doc to never retire before my need of her is over i.e. she can't retire till i'm dead. LOL
14 hours ago, edited 14 hours ago
Mary found this web site re:Palliative docs. It describes in detail what I was trying to communicate. It does a better job. It's important to start at the homepage which the link is too, and absorb the info. keeping in mind palliative is now used in different ways.
10 hours ago
Littlegoats, I did find another link that bespeaks of the problem of finding a Palliative Care Specialist. I wasn't going to link it, but now rethinking that. The page will define where the subspecialty is at in it's growth. Based on what it says, my guess is it will be 5-10 years until it will be a strong subspecialty with enough docs to meet the need. There is legislation that has a potential to cause a change faster. But outcome is unknown.
My first experience with a doc who had received training in palliative care that is as I described, was one of the local hospices docs. This doc was, also, one of the docs that left her family practice years ago to specialize in hospice. She did the same thing then. She went for specialized training. This link describes docs that have done just as she has done.
So, the evolution of this subspecialty is occuring. I guess we were lucky when we needed her she was there. The problem though with DH, was in 2010 from Feb till Aug, he had 10 hospital admissions. The nurses new us well. Some were old compatriots of mine. It wasn't till the 3rd or 4th last admission( last admision he then went into hospice), that a nurse suggested having the PalliativeCare Specialist come and evaluate DH. After catching up with her on old things and she explained the concept of palliative care, I asked when had she done it. She had done it before 2010(exact year -I forget).
The point being, it wasn't in the nurses problem solving allgorhitim at the hospital or the cancer center. It wasn't in the social workers suggestions either at the hospital, cancer center, or in the insurance RN case manager/advocate referrals. None of the oodles of docs involved suggested it. So, even though all these people knew that Doc G had this new training, no one suggested her. Had I known of what a PCS could do, I would have jumped all over it.
www.npr.org/blogs/health/2013/...
Hope something in the above is useful L&H's sheila
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Karen,
Your question about how you will be when 'the time comes to go to hospice' is a good one. No one can tell you for sure of course but give you examples of what others have experienced.
My sister was in the care of the palliative program towards the end of her life. They visited her at home first once a week, then twice/wk, and then once a day. They had a pager to call with any questions with different ring tones for various urgencies. They would review her meds, and symptoms, and help with assessing her needs for equipment to help her around the house.
When the time came to admit her to hospital, it was for pain control. She was aware, did not like it, but new it would be better than being at home and in pain. She was able to make that decision herself with the help of the nurse visiting her. She was admitted and they were able to control her pain better. Her partner had a harder time with acknowledging that this could be the last time she would be in the house...and it was. She deteriorated while there and died 2weeks later.
In Manitoba, getting a consult to the palliative care team most usually means you have a short life expectancy. ( months). However, as others have stated, it allows access to other services that are very helpful and knowledgable . Allowing you to stay a home as long as you are able.
If you are in contact with a social worker, they also would have a good understanding of how your system works in Australia. I find it helpful to be able to talk about anything, uncensored. It just helps release tension/stress in my life I sometimes I don't realize I am carrying around.
Diane0
