November 3, 2007 at 1:36 am #17296fairydropMember
My heart goes out to you and know that we have you in our thoughts daily. I know exactly what you are going through. Don’t give in. The days are as varied as our feelings. I know I feel a great relief from coming here and venting. I also have no help from family. We are a mixed family and Johns children don’t want to hear anything about his illness. One son hasn’t called in months!
My oldest daughter has time and time again asked if i want her to come help.
You have helped me so much with your postings. You can put my thoughts and feelings into the words I can’t.
I want you to know I am here for you anytime you need help.
CharleneOctober 26, 2007 at 6:40 pm #17295stacieMember
I read your post and thought of our family. I think our family was a bit opposite. We all wanted to be with Mark every second of every day from the time he was diagnosed. We could never do enough and Marianne finally had to set some limits so that their family wasn’t overwhelmed by us 24/7. The Dr’s office made a new rule that only the patient and two additional people could be at appointments. I think 8 of us all being there at every appointment was a bit much.
Feelings were hurt if someone was assigned to a certain appointment and someone else didn’t get updated immediately, everyone wanted to be doing something to help, but there were only so many jobs that could be done. We started the family website as much for our family as for others. Marianne couldn’t spend her entire day on the phone updating everyone of us individually. It was a difficult time for us but in a different way.
On the other hand, a couple of years ago my husband’s grandmother was dying – old age – she was 90. She was a very graceful but firm lady. As she was preparing to die and hospice was coming in to help daily I felt compelled to spend even more time with her. I would get lotion and rub her hands and arms and her feet and legs. I would turn on music she loved and spend hours just sitting and talking with her. I felt like it was sacred time. In contrast, her two grand daughters (my husbands sisters) did not spend time with her. It made them uncomfortable and they just couldn’t do it.
I think because we are human beings and because we are all so different, we just react differently to situations that make us nervous or afraid. I think it is natural. Some of us avoid things that make us uncomfortable and some of us just charge right in and work to make it better. It’s just how we’re built.
While I wish your sister would have just come. I think she may have been asking if you needed her. Some people need invitations into our lives – clearly my family needs an invitation to back out (haha). But the hardship is the same. Since everyone grieves differently, even those closest to us don’t know the appropriate way to help – sometimes the grieving person just has to say… this is the best way you can help me.
I don’t know why this is, but I’m so glad you are focusing on those who have helped and comforted you through this situation. Focusing on the blessings of this situation has been the only thing that has allowed me to move past all the sad feelings and move forward.
I think I should probably have Dr. Giles address this issue as it comes up often. And Marianne has talked about writing a book on how to help people know how to reach out to people in a tragic situation. It sounds like perhaps it could be a joint effort.
Much love to you and yours
StacieOctober 26, 2007 at 5:41 pm #17294alisonParticipant
Hi Jules and everyone
I too look at people older than Jon , he was 45, and think ” how unfair “
As the 1st anniversary of the Op and everything that followed is approaching , I find I am going over it again in my head and am having problems sleeping and concentrating again I think as you say you just learn to live with it
AlisonOctober 22, 2007 at 8:33 pm #17293julesParticipant
thankyou for your replies and sharing your experiences with me, I do not feel so alone when I hear from you, and as Joyce says, grief is a lonely experience. I am now starting to realise that, initially I had hoped that people would be there for me or that I could grieve together with others who cared for my Dad, sadly that is not the case. I just cannot begin to understand some people and unfortuantly events like this can open cracks in relationships and highlight just how cruel some people can be.
Teresa – why did your sister feel the need to ask something that should be so obvious? – her actions were unbelievable – so cruel. I am so sorry to hear that you are now caring for your husband and having to go through this agony again in such a short space of time. I hope that you have others there for you, Alan’s friends sound like a special group of people, and it so true what you say – you find support in the most unlikely of places. I feel that THE ONLY good thing to come out of all of this are the friendships that I have made through this website. I have met some truly special people. I know that my Dad felt the same way – he always admired the strength and determination of both the patients and carers on this site.
I keep you all in my thoughts.
love JulesxOctober 22, 2007 at 9:59 am #17292teresaMember
Hya Jules and everyone on here.
As U.K. has said our experiences are different and yet as I read the posts there are some themes that run through that I too have experienced. I feel that we all have the same ones but at different stages in the grieving process. Moving a step at a time, often overlapping. As I have commented before I am caring for my husband who is also nearing the end of his life after 48 years of marriage and often have to hide my grief whilst doing this.
I too have had soo much anger in very much the same pattern.
The talking and re-living of Alans final days have consumed so much of my time and the need to talk of him. It appeard to me that others were getting to the stage when they were even walking away whilst I was speaking. They were not listening. As jules has noted I really needed people to just turn up and talk and listen. My husband actually told me to stop talking about it. My older son who lives in Scotland does not like to talk to me so much about Alan. He cannot see through my anger as he too is grieving. So you see even people so close do things differently. Nothing eased my pain and anger.
I also found more recently I have been thinking about the people in my life who did not even offer to support ME when Alan got ill. It has been very sad for me to realise my vicar and congregation did not contact me at all during Alan’s short illness, at the time we were not aware of how long this would be. My sister is also at our church and I knew she updated them. We live within a short distance of the church and it is only now that I have been able to put these sort of things into words.
My oldest sister who I love dearly lives 200 miles away on the coast phoned when Alan passed away and asked did I want her to come to his funeral. I travel to see her at least 5 or 6 times a year. I was so incensed I said no, don’t bother. She did not come. I now feel I need to know why she needed to ask whether to support me or pay respect to alan.
However, It is with great joy that I have found out who my real friends are and they are the most unlikely ones. One of them has always been a pain in the backside, breaks all the boundaries of life and never knows when to take heed. Lovely lady.
When Alan was ill she put a note through the door every day, could she do anything such as shopping, washing or ironing etc. Another one just telephoned every evening just to make sure I was O.k. Others called quickly but made sure we were allright.
The younger folk whom Alan knew were real gems. We named the girls Charlies Angels Without them I could not have managed. It changed my view of the young people of this country. Even still today some of these young people visit us regularly and talk of Alan. I have had lovely letters and poems written by them and I will tresure them for always.
One day I hope to be able to do some books concerning Alan’s life and what happened to him but for now I have to continue caring for my husband and go through the whole process again.
love and light Teresa Alan’s momOctober 22, 2007 at 6:29 am #17291jmoneypennyMember
Just so you know you’re not crazy (or maybe you are, and then I am, too) – I have the same kind of anger that you describe. I read all the Kubler-Ross and assorted books on the subject, and they left me uninspired since they left out so much, especially this anger. They state that you have anger toward the person who died and you tend to idealize them, and in my case that is simply not true. I’m not angry at my mother AT ALL and I’m completely aware of all her irritating little faults that used to drive me crazy, so I don’t idealize her. I am angry at the WORLD in general, at this life for being like this, at cancer, and when I see worthless, unloved people live to a ripe old age I’m angry at them, too, for living so long when my mother could have used those years. For a while, every time someone pissed me off, I’d think “Okay, that’s two years off your life to give to my mom.” I hear people talking about their grandchildren and I’m angry that they get to see their grandchildren and my mother, who lived for my daughter, can’t be here for her. I guess I’m angry at fate, kismet, whatever, and in my stubborn way I’m refusing to accept reality because there has to be a way I can change it! Not rational, like you said – but very human and normal as long as it doesn’t become psychosis or something.
When my beloved stepfather Dennis died 5 years ago, at the funeral I commented to his brother Eddie that my stepfather looked just like Eddie (Eddie is very skinny and my stepfather was wasted away with cancer when he died). Eddie is a great family friend, always has a joke, and he said “Yes, I bet you wish it were ME in that coffin instead of my brother.” I knew he would understand when I said, “To tell you the truth, Eddie, I love you like an uncle but I DO wish it were you in that box instead of Dennis.” Eddie understood, as I do, about the “bargaining” phase of grieving – right now I’d exchange anyone in the world if it would make my mother live again. Just like “Year of Magical Thinking” – a great book about some aspects of grief. And don’t get me started on anger toward doctors!!!
I read all the grief books and I can recommend some to you – I’m a big reader but I just can’t seem to concentrate on anything that doesn’t have some relationship to my mother since she died, so the death and dying books give me a connection. I can’t share my thoughts with anyone because they just think I’m obsessing, when I’m just trying to deal with my pain and they can’t possibly understand or say the right thing (I just love it when people tell me that she’s not suffering now – of course I don’t want her to suffer, I just want her back the way she was when she was healthy!). And yes, I’ve had the annoying one-upmanship game played on me — everyone tries to top your grief! I can sympathize if they’re really hurting and just sharing with you, but very often it is just a game of “I had it worse than you and I survived, you weakling.” Even worse, I think, are the people who won’t mention my mother at all — as if she never even existed, as if she doesn’t matter anymore. Yes, you need to go over and over all the details of your father’s illness and his last months – that’s something I still do in my head and it has to be released somehow. Like KateG’s posts about her mother, it’s just natural to want to make sense of this senseless horror by writing it down and/or talking about it. No one wants to hear it except those who have gone through it and/or those who loved your dad almost as much as you do — and even then, they may be no support since they’re dealing with their grief in a different way.
I read this over and realize that I sound VERY angry, when in reality I’m really not – like you said, emotions are all over the place. I don’t want to sound like I go through every day wishing everyone dead and hating everyone! There’s just such a frustration at reality, that makes me want to shake my fist at the powers that be, and it can come out in anger, sadness, self-pity, defensiveness – everything. I’ll be fine, talking to another parent at my daughter’s school playground, and someone will mention their mother and I just choke up and try to hold back tears – I’m sure they think I’m crazy! After a month or two is over, people expect you to just get on with life and not make them uncomfortable by showing your grief. It’s a very lonely process and I often say it’s a very self-centered one, because you have to heal yourself and turn inward to find the strength you need, and can’t be bothered wtih other people’s trivialities too much.
Anyway, I know the pain is still very new and raw in your case and I just wanted to write to empathize with you and vent some more. That’s all anyone can do that matters right now. I’d respond to the other posts but I’ve already gone on too long. Though I must say that meditation is a great idea and it has helped me a bit.
Much love going your way,
JoyceOctober 22, 2007 at 5:47 am #17290franMember
Dear Jules, I am very new to this sight and still not very sure how to use it.
I have just started the journey you are on. My husband was diagnosed March 2007 with a Klatskin tumor and I am treasuring every moment we have.
My heart goes out to you at this sad time and I am so sorry that you are feeling so much pain but venting is the only way to get through this and what a wonderful site this is for allowing us to do that.
I can only tell you how I coped when I loss my mother suddenly in 1994, she lived with us in Australia and was holidaying in the UK when she fell ill with flu and died within days. I can still feel the pain from losing her, she was such a wonderful person and so full of love. I felt all the emotions you are feeling especially anger which I took out on my dad as he was the one that wanted to do that one last trip to the UK. I so regret that anger now and realise that it was just grief creating that pain and anger.
My one savior was meditation and I used to spend 30 Minutes every morning talking to my mum and crying until I got to the stage where I could feel her energy and I found if I was in the garden tending to her flowers i could feel her wonderful energy in my hands, the love that I felt then and still to this day when tending her flowers is what got me through.
I hope this will be of some help in understanding what you are feeling, I will send you love and healing in my meditation everyday, love Fran xOctober 21, 2007 at 11:14 pm #17289julesParticipant
I have been told that this grief is something that I will ‘learn to live with’ rather then ‘get over’ and that the intensity of emotion will lessen in time. I have also found that my moods are all over the place. I seem to be functioning okay one minute and the next I feel overwhelmed by extreme sadness that seems to paralyse me.
Of course I know that he didn’t want to die and I do not feel angry at him, I just feel extremely sad for him. He lived life to the full and enjoyed every minute and he has been taken too young. I feel anger at some of the Drs (eg his GP who for 2 years previous to my Dad’s diagnosis told him there was nothing wrong despite the fact that my Dad had worrying symptoms). The anger can become irrational aswell – I know of unpleasant men much older then him living full lives, I think why him and not them? – I know it does not make sense but I can’t help these feelings.
I am also angry at people who say “just let me know if there is anything I can do?…” what does that mean?! – why not just turn up at my house one evening and offer me company and a chance to talk? – that is what I need – your time – I want to talk and talk, I want to go over and over the events of the last 3 years and try to make sense of it in my head if I can, I want someone to listen who cares. Unfortuantly I don’t have that, as I am sure so many people don’t. That is why venting here is such a release. Being amongst others at this time trying to act carefree just feels like such a burden, has anyone else experienced the ‘trying to outdo you on the grief front’? – you know those people – “I lost my mum, dad and niece all within the space of 6 months”. ALL GRIEF IS VALID – young, old, husband, Dad, grandparent.. it is what that person meant to you, the relationship between the 2 of you that mattered and nobody can make assumptions about that.
I am sorry Patricia that the pain is feeling worse now. I hope that the counselling may help you now. Betty – thankyou for your posting, I have read a book by kubler ross ‘on grief and grieving’ – it is written with such empathy and understanding, a real comfort and a beautiful book, I would recommend it to anyone in our position.
PS – Jeff I was very concerned to read your posting and I am hoping that your daughter is okay. Take care, love JulesOctober 21, 2007 at 3:32 pm #17288ukmemberMember
I think that our experiences are as different as we are. I had counselling immediately after M’ death and I felt little or no benefit – and that’s not a reflection on the counsellor. I have never felt anger; my husband would have given anything to stay with us longer -he had no choice, so why be angry about it? I have written before about my work and my family and how both of them keep me engaged and involved in the world, during the period since his death. It seems to me that it also allowed me to paper over the cracks and to set aside the emotions that were there.
I am now 18 months post M’s death and in some ways I feel worse now. I went to a wedding anniversary party yesterday and someone read a beautiful poem by Khalil Gibran about marriage and there were tears rolling down my face. People spoke about him and I felt my eyes filling with tears. It’s as if my feelings were a great pool and I am walking over them on a narrow and shaky bridge. IMany people have told me that the second year is in many ways worse than the first. I am thinking of having some bereavment couselling now. I have accepted his death. I am not expecting to see him but the feelings are still there and as strong as ever.October 21, 2007 at 12:33 am #17287jeffgMember
Hi Betty, Thanks for sharing the grieving research post. I’m curious if any research like this was accomplished for those who are living the reality of death and grieving for the loved ones being left behind ? If so I think that bargining would remain as one of the stages, as I bargin all the time for God to at least let me remain mortal until I feel comfortable that my Loved ones will be okay after my demise. I just bargined this week. My Duaghter had her thyroid removed and we are awaiting on the pathology report. I told God he could bring me on home anytime, but at least let me hear or see a pathology report that says my duaghter will be fine and able to be with her children, my precious grandchildren. Just thinking out loud Betty. I did find your post interesting. I guess I was doing a little comparison if the table was turned the other way.
JeffOctober 19, 2007 at 1:46 pm #17286lisa-annParticipant
Thanks for sharing this with all of us. In some way at some point, we all go through most of those emotions.
LisaOctober 19, 2007 at 1:12 pm #17285bjohnsonParticipant
A Crisp View of God
There is a window in your heart through which you can see God. Once upon a time that window was clear. Your vew of God was crisp. You could see God as vividly as you could see a gentle valley or hillside.
Then, suddenly, the window cracked. A pebble broke the window. A pebble of pain.
And suddenly God was not so easy to see. The view that had been so crisp had changed.
You were puzzled. God wouldn’t allow something like this to happen, would he?
When you can’t see him, trust him . . . Jesus is closer than you’ve ever dreamed.October 17, 2007 at 1:59 am #17284stacieMember
Thanks for sharing this, I never experienced anger after Mark’s death, I felt very peaceful, but yearning is the emotion that I have experienced most.
We are quickly approaching Mark’s birthday in December and then the 1st anniversary of his death. I still look at his picture every day on the piano in our front room and can not believe that he is gone.
StacieOctober 16, 2007 at 9:02 pm #17283bjohnsonParticipant
New Five-Stage Theory for Grieving
A friend of mine in Thomaston, GA did some research on grief. She passed her findings along to me and I wanted to share them with all of you that have lost someone. I don’t think any of us faces a harder challenge than losing a loved one or comforting a friend or relative after the death of someone close. Most of us have heard about the “Kubler-Ross” five-stage theory of grief for people who are dying, which many people believe also holds true for grieving over the loss of a loved one. The theory describes five distinct emotional stages to grief that terminally ill patients go through – denial . . . anger . . bargaining . . . depression . . . and acceptance.
Surprisingly, little research has been done to affirm the validity of this theory, which was popularized by Swiss psychiatrist Elisabeth Kubler-Ross, MD, when applied to bereavement. My friend called to ask about the new study, published in the Journal of the American Medical Association, Holly G. Prigerson, PhD, senior author of the article, said “It struck us as odd that a theory with such wide acceptance had never been actually tested.” Hence, Dr. Prigerson and her team set out to take a closer look at how people process grief and loss and to determine whether the five-stage model is accurate.
A FRESH LOOK
The researchers followed 233 people who had lost a loved one — a spouse, parent, sibling or child, with the majority (84%) bereaved spouses. All deaths were from natural causes, mostly following a long illness. During the two-year study period, participants kept track of how often they experienced each of the five grief indicators –denial/disbelief … yearning … anger … depression … and acceptance. Theorizing that separation anxiety plays a major role in mourning the loss of others, the researchers removed “bargaining” (they believed that “bargaining”, was more relevant when processing your own forthcoming death) and used “yearning” as the core indicator of separation anxiety. The results found some important differences from the five-stage theory.
Grieving, they learned, isn’t exactly a linear process of working one’s way toward acceptance. Instead the various emotions overlap considerably during mourning, with some predominating at different times. Interestingly, disbelief did not top the list as the initial dominant response although it scored at its highest level during the first month post-loss. Rather, acceptance (the last phase in the five-stage theory) was what people reported most often feeling during each period of the study.
It turns our that the new stage — “yearning” — was actually the most frequently reported negative emotion, peaking at four months post-loss. Anger peaked at five months and depression at six months after the death.
IT’S ALL NORMAL
While interesting to have this new perspective on the science of bereavemewnt, what’s most important is how the study results might be helpful in coping with loss, or being supportive to friends and family who’ve suffered one. What’s most meaningful is how this research can help normalize how people experience grief, by rendering acceptable the wide range of emotions that surface in the ensuing months.
Anger is likely the most difficult emotion to cope with. Most people have a hard time accepting or expressing their anger at the departed loved one. They feel tremendous guilt about being angry — but as this research shows, anger does come up. It’s reassuring to know this so that unnecessary and damaging guilt can be avoided. Bereavement shouldn’t be considered something to “get over” but instead a fact to be eventually integrated into the survivor’s life. Everyone is different after the experience of profound grief.
IS HELP NECESSARY
The fact that the intense emotions (yearning, anger and depression) all peaked within six months of loss in this study led researchers in their conclusion to suggest that those for whom those feelings continue after six months may need to seek help or might benefit fromn evaluation. Dr. Dennis McCann, PhD, director of pastoral care at Middlesex Hospital in Middletown, Connecticue disagreed saying there’s nothing significant about the six-month mark. A better determination of whether a person needs help at any time during the bereavement process is how well they are getting on with the activities of daily life. If the pain is so great that one cannot function, then help is certainly needed no matter the time frame after the loss. This might take the form of individual counseling or joining a bereavement support group — or for some people, medication for depression or anxiety to allow them to handle their responsibilities and navigate their daily lives after a profound loss.
Is there any way to prepare in advance for such a loss? Dr. McCann said that meditation and mindfulness can be helpful as practices to lead toward realization and acceptance of an uncomfortable reality — which is that all things and people in this world are impermanent. While not all losses allow time for preparation, coming to terms in advance with both the inevitability and capriciousness of the cycle of life may go far in helping you and your friends/family cope with a painful loss when it strikes.
I hope that some of the findings above will help those on this site. I found that the few weeks following Sam’s one-year anniversary have been unbelievably hard so there is just no majic time frame. Martin Luther, one of the most fascinating figures in Christian history, said “There is no sweeter union than that in a good marriage. Nor is there any death more bitter than that which separates a married couple. Only the deaths of children come close to this; how much this hurts I have myself experienced.”
Whether you lose a spouse, a child, a parent, a sibling, the hurt and pain can only be felt by those that experience this loss. I have quoted C.S. Lewis on this site before but I love what he said “their absence is like the sky . . . spread over everything.”
Love to all of you
BettyOctober 13, 2007 at 12:12 am #17282teresaMember
Hya Jules I feel so much of your pain. I too would not know what to do without this site and yet I have had some councelling from our most fantastic hospice here in Birmingham. I also know that the pain we feel is so great that unless you have experienced this it is impossible to understand or comprehend. Everyone has said everything, but I feel safe, secure and loved by everyone on here as they understand my rage, pain and anguish.
I feel that CC is a very different sort of cancer due in part to its nature and the toll it takes on the body of our loved ones.
It is some time now since we lost Alan but I am still not able to sort out his belongings. I find great comfort by being able to touch and smell his clothing. I sometimes scrunch his t-shirt or a sweatshirt and hold it to my face and I can see him wearing it and laughing. Although it makes me cry I find the joy on his face comforts me. I hope that one day you may find some peace. all my love to you Alan’s mom xxxxxxxxxxx
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