topic Anticipatory grief in Coping with a loved one's cancer

Anticipatory grief

ArnZo_carer — Sun, 11 Jan 2009 01:02:37 GMT

Hi all The brave face is just impossible some days, by the sufferer and their loved ones. It is a relief of sorts to know that other people are out there caring for the loved ones who are suffering, but it is oh so hard to watch the suffering and what do you say when your loved one starts talking about wishing euthanasia was legalised, to avoid the inevitable suffering that will only get worse. My mother in law lost her mum on Tuesday night - we were all with her as she passed away. It was a blessing for Lotte (hubby's nanna) as she's suffered from dementia for the last 6yrs and her body had taken all it can. The nursing home staff were wonderful and focussed on keeping her pain free with buckets of morphine, but so cruel that she couldn't go with dignity and had the inevitable wait while her body shut itself down. Even though Lotte is in the best place she can now be, it is devastating for my hubby and his mum, given that this will be another death since his mum went onto death row, so to speak. Hubby has been keeping it together (only just) until yesterday when at the funeral mob - his mum picked out her own coffin while choosing her mum's coffin, then calmly told us and his sister whilst surrounded by coffins that her cancer has taken off again and they'll be back again soon at the funeral directors for her send off. The black humour is what kept us all going at the time, but last night it caught up with everyone. Watching poor Lotte have to die slowly was very hard for hubby and his mum (hard for all of us I guess) and Erika doesn't want the family to sit in vigil with her when her time comes. Her symptoms are back (seems the radiation only slowed it temporarily) and coughing up blood etc is back. The metastases through her pelvis, hips and left shoulder has greatly affected her mobility and we fear that she will go downhill rapidly now that her spirit has broken. Diagnosed just before xmas, since then she has lost her horse of 20yrs, her son-in-law's brother died in a freak accident 2wks ago and her mum died on Tuesday. There's only my hubby and his sister left now - thankfully both of them have been able to take the week off to keep her company and share the burden of organising the funeral etc. We've all been surrounding her with love and support but it's impossible to ease her grief over her mum and her own situation. Sadly religion is no comfort to her - her mum was a staunch catholic so will be buried with a catholic mass etc, but she's adamant that she doesn't want any 'religious crap' for her funeral service and will haunt us if we do. Everyone's lost their beliefs after the huge amount of crap that has happened over the last few years. Sorry, promise we're off to see the counsellor asap, plus the doc for some happy pills. The upside is we're all very reflective on life and are treasuring the time we have. Take care everyone and hope that you've all been able to have at least one bright spot in your day. Zoe

Anticipatory grief

Uncle_Horses — Sun, 11 Jan 2009 01:04:00 GMT

I am so glad that my thoughts are no different to someone else going through the same situation. Yes I have gone through the planning the funeral and run through teh eulogy so many times in my head. I think this will be the first time I write down a speech just in case I need someone else to finish it off for me. I have set myself a goal of giving the eulogy as no one could cover our life experiences like I could and I feel I owe her the honour. We have not discussed dying until about four weeks ago when we had two nights where she couldn't even lie down. We spent those two nights sleeping in the chairs in the loungeroom. It was on the first of these nights that my wife said to me it is true I am dying aren't I. She said up to now I think I have still been in denial. She wants her ashes put in five separate containers so that she can be with each of her kids for ever. She still potters around each day but she says she is fine in teh morning but it gets worse as the day goes on. It is so good to be able to put your thoughts down as it helps releive the pressure.

Anticipatory grief

Sharon55 — Sun, 11 Jan 2009 01:06:00 GMT

Thank you for adding this topic to the forum. When my husband was first diagnosed with Colon Cancer in Jan. this year it was such a shock and with the initial appointments and surgery we went through this with the attitude of we will handle it and all will be fine. After the surgery, we were told that the Cancer has spread to the Liver and the Doctors were very frank about the possible outcomes, it was while he was in hospital that I started the Anticipatory grieving process. I remember the morning I was showering and in my head had planned his funeral and eulogy and broke down with having these thoughts. Thinking that there was something wrong with me. Thankfully I have 2 friends that have been similar with their husbands and they were able to re-assure me that this was perfectly normal and the sub-consicous brain was kicking in to face a possible reality. They then warned me that one day I would probably be asked to have the conversation about "if I die" and I was ready for that. To date we have not had that conversation. My husband does not talk about his Cancer at all. The range of emotions that the carer goes through is amazing and there are so few people that would really understand unless you have been there. Of course to have people speak honestly about their feelings and thoughts too is another obstacle and that is where this forum has been such a god send for me. There have been times when I feel as though I am going mad or perhaps making things up in my own mind and then I read an article on here and I see that it is completely normal. I am finding at present the hardest thing to deal with is my husband not talking or allowing me to talk about the Cancer and he has slowly been distancing himself from me. I understand from a counsellor that this can be common as the patient feels as though if anything does happen it will make things easier. I am finding it hard and then I feel anger followed by guilt and I settle again. As the Cancer has spread to the lung and Abdomen, although the lung and Abdomen tumours are shrinking, the concern about the future is in my mind. I would give anything to have my loving caring supportive husband of 32 years back. The man that was always so calm and placid and out there has become angry, negative and just not there. This is harder to deal with than the Cancer itself. I know that he has every reason to feel like this, if only we could get him to talk about what he is feeling, I feel this would make such a difference. The Oncologist is trying to move him towards counselling however so far he is resisting. I take each day as it comes and really it is a matter of living moment to moment and knowing that when he is upset that this moment too shall pass. I know that I have rambled a little but it is good to get it out in a safe forum. Thank you.

Anticipatory grief

clo — Sun, 11 Jan 2009 01:07:00 GMT

dear Sharon reading you was like i was reading my journal if i had the courage to write 1 !my feelings my husband reactions are so similarto what we r living .i feel really alone but i just realised im not .thank you Sharon

Anticipatory grief

Kaz0201 — Sun, 11 Jan 2009 01:08:00 GMT

I too feel guilty for having feelings of "what if". but can't bring myself to ask him the question. My fiance, who lives in another city, was diagnosed with Bowel Cancer last November. After almost 6 months of some pretty aggresive chemo, he had his first barrage of tests to check the progress, today we find out there maybe spots on his liver. Immediately, i thought "he is going to die". My partner is very positive and up-beat (one of us has to be), but i can't help but think the worst. I cant control my emotions while I talk to him, friends or family. By me being so sad and depressed i know is not helping his wellbeing, but in his moments of personality change (due to chemo side-effects) he can also accuse me of cold and heartless if i show know feelings about the cancer or chose not to talk about it. I have asked him countless questions and thankfully, he has given me the answers but there is a little voice deep inside that says that this is the beginning of the end. Sorry for being so down and depressed and waffling. Forgive Me. K

Anticipatory grief

Sharon55 — Sun, 11 Jan 2009 01:09:00 GMT

Kaz, thank you for taking the time to write an honest article of your feelings. The emotions and thoughts you are feeling are exactly the same as I have felt through out the past 6 months. There have been times when I have felt like I am drowning and have been able to move through these times with having friends that will listen to me, meditation, and writing down my feelings and thoughts. I wish you all the best for your next appointment and remember to take time for you. I know that is easier said than done when you face an uncertain future. I have been guilty of not doing things for me and have just come to terms in the past couple of weeks that I need to keep living also and this is OK. Try to keep smiling and take each day as it comes, and sometimes it takes breaking it down minute by minute.

Anticipatory grief

joec — Sun, 11 Jan 2009 01:10:00 GMT

I find this anticipatory grief the hardest because of the unknown of what is going to happen next and when. I think in the initial stages of the diagnosis we just dropped everything we were doing to wait and see what would happen. As my wife has undergone treatment we have tried to return to how our life was before she was diagnosed. Yes you have anger and the thought of all your plans for the future disappearing. The plans of being grandparents together and being able to return the children to their parents after you spoiled them. Thankfully up to now my wife has had no pain if she hadn't felt the lump in her breast life wouldn't have changed. The thoughts go through your brain of what you will do when they are gone and how you will cope. Yes it does get depressing. Thankfully I have a couple of close friends who I can talk to at any time who I use as a sounding board.

Anticipatory grief

Uncle_Horses — Sun, 11 Jan 2009 01:11:00 GMT

It is now three months since I joind this forum. Things have continued but the chemo wasn't able to slow up all the cancers with the discovery of a few more. My wife is still in denial about it all although she is slowing up now she sleeps for 12 to 16 hours a day is going off her food and some days has difficulty moving around. All the time she says she is okay but when you have known someone since you were 6 it is hard to hide anything. We started getting into a routine again but it hurt more coming home and finding she was not well. I am thankful for every day but everyday hurts a bit more and you feel an emptyess in your stomach. I know the outcome is inevitable and every touch and cuddle means more every day but I do worry what I will do when she is no longer there, for the first time in my life I will be alone without my rock and soul mate.

Anticipatory grief

Susan — Sun, 11 Jan 2009 01:12:00 GMT

Yes, I certainly agree, the anticipatory grief is very difficult to deal with. I have a great sense of loss for the future, for what we have planned to achieve and do together. My partner was diagnosed in Nov 06 after a long two years of being sick and no one being able to work out his problem. He has received a very poor "statistical" prognosis, has had one major operation and has been receiving three days of chemo treatment every fortnight since Jan 07. We have tried to lead a 'normal' life, like before the diagnosis, but we just can't do that. We have experienced such major changes to our life that we are continually adusting to our new way of life. It was difficult to accept the fact that he will die one day, and when I began to entertain this idea I felt guilty thinking about death and felt that I was tempting fate, like it is actually going to happen. And then I realised that it is ok to think and talk about these matters. We have been fortunate enough to have a friend who unbeknown to us before the diagnosis is a counsellor and is quite experienced in grief counselling. Well, they made us feel quite welcome to ask for his help to deal with this cancer diagnosis and treatment, so we accepted his invitation and have not looked back since. I am so proud of ourselves in asking for his help, as I feel we would not be coping as we are now had we tried to sort out our thoughts ourselves. We do grieve for the future plans we have now lost, but we focus strongly on our new adjusted life and always take heart in the good experiences we have. We don't plan too far in advance for what we are doing, usually up to a week at the most. We let the grief happen, and ensure we use up those emotions, we don't bottle them up, as once they are out, they are released and we can put our energies into the now and remain strong. We are both very positive people and I feel that has also assisted us in managing and coping with our continually adjusting life. One day I know I will have to embark on a journey of grief that will be so much more than what I have ever experienced, but I am not the one with cancer, and I remind myself of that fact. Since the cancer diagnosis I have experienced a whole range of emotions, and through this I have learnt to be patient. Grief is something that I am not familiar with, and I suppose that is why it scares me for when the time come. But I know I will have to remind myself it is ok to grieve, to go with the flow, get the right help with it at the right time and be patient. These forums are very helpful to me, it confirms the fact that this cancer experience is felt by not only myself. I have found some very helpful comments throughout the forums. Thank you.

Anticipatory grief

Uncle_Horses — Tue, 07 Apr 2009 03:03:28 GMT

The battle continues. Since I last added something to this post the cancer has increased in her liver and gone to her bones and brain. We have the radiated spheres put in teh liver and after easter commence radiation for teh brain tumors. The saddest thing now is watching her deteriorating motor skills. We have our first grandchild due next month and she is worried that she wont be able to nurse it and she will throw it up in the air. I said to her I want to see her dress the baby. I think teh baby will have to live in a nappy and a rug when Ma is around. I think the most interesting thing is the way the children all react to the situation. The boys tend to not visit but our daughter has just gotten closer. She rings her mother two to three times a day to chat and two weeks ago went with us on a holiday to the Gold Coast. Because the boys only see their mother every month or so the changes to them are significant. Number three son couldn't cope with seeing how is mother was at the last visit. She continues to struggle on and says, "Give me time and I will get there." We stay positive near each other but every week or so I need a break for a couple of hours and thats when it really hits me and you go through the thoughts what will I do with out her, will I sell the house, will I change jobs the decisions are many. In the back of your mind you are wishing that it wasn't happening and that we still had another 30 years together to grow old gracefully and fulfill all our plans. Everyday hurts and the future even moreso.

Re: Anticipatory grief

Louise_E — Tue, 07 Apr 2009 04:25:27 GMT

It is so good to read all these comments. I know you will all understand the tears in my eyes when I got to the end. My friend is organising his paperwork so it will be easy for the family to carry out his wishes etc and he wants to make a simple will. I try to remain optimistic about his having quality of life for a while longer. I know if I were the one coughing blood, getting breathless from tumours in my lungs, facing chemo without much help from it.....I would want to get my affairs in order too. And I'd really want someone to believe in me and encourage me too, at least up to a point, but sometime denial has to be replaced with acceptance. I'm signing off to call Carers Australia as per Louisa's blog. It's good to have a few options for myself and this "safe place" is invaluable. Good wishes to all.

Re: Anticipatory grief

FreeAsAButterfl — Tue, 07 Apr 2009 14:36:06 GMT

Hi all. Im new here and still trying to navigate my way around the site. I had posted already if anyone else here had advice on coping with the overwhelming grief of losing a loved on due to cancer. Eve when we knew one day it would happen...when it did it was still unexpected and knocked the wind out of our sails. Thanks

Re: Anticipatory grief

Kaz0201 — Thu, 30 Apr 2009 11:07:05 GMT

I thought I would write a quick update, funnily enough I find this very therapeutic. Back in January the spots came back okay but later on in March - Pow! Another spot. This time the spot on my fiance's liver proved to be a problem. He has just been through 4 weeks of radiation and chemo (with one more week to go). Okay, so with the first diagnosis (Stage 3 bowel cancer) I was so very sad, now I feel that our future together is slowly disappearing. I don't know if I mentioned before that he is in Melbourne and I'm in Sydney, which makes it very difficult to connect with his turmoil. Every so often, I have a little meltdown, sometimes with him, sometimes alone. He does try to push me away and gives me a choice to stay with him or walk away. I feel guilty to say that I have considered walking away, I feel that it could be better for both of us. He doesn't need negativity, sometimes I can't help be negative and depressed. We have been together for over 6 years. Endured our long-distance romance for almost 4 years. (In case you're wondering, he won't make the move here or me there until he is better). Thanks for listening. 🙂

Re: Anticipatory grief

larn75 — Wed, 10 Jun 2009 13:39:37 GMT

Wow. I am normail! WE are normal. Reading everyone else's posts has been like a weight lifting from my chest. There are so many similarities, and although I wish no one had to go through any of this, I take comfort in what you have all written. It took me so long to join something like this and now I am glad I made the move. Unfortunately I have trouble talking to my friends about any of these more complicated and controversial feelings as none have been through it and dont have the coping skills to help. I have often heard 'well you dont have cancer so think yourself lucky', or 'what do you expect from him, he has cancer' or other such insensitive comments. If I make a normal comment about my husbands moods (which he had before cancer as well as now) I get the dark looks, as if you dont have little tiffs like before over the high phone bill or the kids arriving home 5 minutes late! While coping with cancer and all that goes with it, you still have all the usual everyday business at the same time. In saying that, cancer can be all consuming as well, cant it?!?! So much to deal with as well as all the everyday caring for kids, cooking etc etc. Sometimes I feel like screaming 'Its not just his cancer you know! Its not in my body but its all through my life. I go to chemo sessions, I go to oncologist appointments, specialist appointments, blood tests, GP visits to get meds so he doesnt catch anything in the waiting room, I do all the shopping and running the kids around in case someone has a cold, I even go to Bunnings list in hand and collect things I have never heard of so he can finish something in the shed!!' But I am scared if I get told 'atleast you dont have cancer' one more time I might do a Linda Blair and rotate my head 180 degrees whilst spewing green vomit!!! haha It is also hard to watch my kids little hearts break when he is screaming at them to keep away if they have a runny nose. You just dont understand that when your seven and used to be the apple of Daddy's eye. So many things to deal with at once. If I leave the house for more than half an hour, I get a txt each from my two teenagers, a phone call from my seven year old and one or the other from hubby asking for something he cant get for himself as he cant drive. Once when my girlfriends took me out for a drink, one of hubby's friends and also his mother asked me what kind of wife I was to leave him and go have fun while he couldn't. I sound like such a whinger and that is somethng I despise. I am such a positive person by nature that it is horrible to feel so whiny!! My hubby is very very positive when talking to others, even blaise at times, but we see the fear and anger for long periods of time. It is such a helpless feeling to not be able to fix things so all is the way he wants it. It is also hard feeling like all the laughter has been sent out of our house, it was so filled with it before. Laughter and music... seems the cancer got into those too. Does anyone else have partners that wont leave the house now for fear of getting sick? The nurse at the clinic seems to think it is a little extreme, but I know it is a fear of hospitals that is causing it. i just think he would not be as moody and angry if he got out of the house more. Hope I made sense, I feel like I was jumping all around the place. Big indication of how my emotions are right now I guess. Hope my ramblings help someone else!!! :-)

Re: Anticipatory grief

FreeAsAButterfl — Wed, 10 Jun 2009 23:52:20 GMT

Hey larn75....wow...and wow....you have hit the nail on the nead and trust me...you are not alone in your feelings. You are completely normal. Its hard to make sense of something that doesnt make sense isnt it so youre doing well to even be getting out of bed each day. Your comment just tugged at me so deeply, I know what youre going through and I agree completely with the insensitive comments and the lack of understanding from people. Yes you may not have the cancer ritself but you may as well have! It seeps into every pore of your life doesnt it? and no one and I mean no one couldpossibly understand you unless they have been there themselves. My Mum has just lost her battle after 8 years of breast cancer. am aching so badly that its hard to breath. All throughout it she kept the best attitude, never said why me, was as social as ever, she used to go shopping or to the club directly after a chemo session. It wasnt until the last 12 months that she started to change and I suppose we should have seen it was the end coming but denial and hindsight..its easy to see now. My dad has been the worst since losing Mom as far as his anger and aggression and complete inability to talk to us normally. I was so worried about him and his grief and he has currently "wiped" me claimng he wants space. So Ive not only lost my MUm but now my Dad is distancing himself and I dont have the strength to argue or try and fix things. As far as your partner being so angry and anti-social...this is not good for him or for the family, however you are talking to a brick wall trying to get him to do what he doesnt want to. Its like an alcoholic, they have to admit they have a problem before they can receive help. Right now your husband is feeling very much the victim and the "why me" syndrome. Everyone is different how they handle their illness but he really needs to change that attitude to a more positive one if he is going to get through it because anxiety and anger is going to make him sicker then any runny nose of a seven year old is going to do. As for you, you need to take care of yourself first before you can take care of him. Not the other way around. Because if you fall down as well where does that leave the family?..the kids? I would say to your husbands mother and mate with their cruel comments that what type of mother and friend are they that they cant come and sit with him or help in some way to give you and the kids a break? People who arent dealing with what you are find it so easy to give criticism whilst doing nothing themselves to help. Funny that! You are not a whinger, sometimes I wonder if its just as hard if not harder for the family of a cancer patient for the simple fact that they also have the fear of losing their loved one, how the provider of the household is now no longer able to and it all falls onto you whilst still having to maintain as normal a household as possible, particularly for the children and then everyone still expecting you to be "normal" and "happy". What dont they understand for goodness sake!! The wanting to scream..oh I know it...and Im still doing it now..although for different reasons then you...but still the feeling of being lost and alone in all of it is so consuming and exhausting. I bet youre finding now who youre true friends are and who you want and need in your life? Ok..so what can you do?..well Im no expert by any means, the only thing Id like to suggest is a couple of things that do work for me but it is a long process just the same....firstly...talk to yur husbands doctor/oncologist about the not wanting to go out and the anti-social behaviour/paranoia about catching infections. Then the doctor can talk to him about it what his real limitations are. I never once heard my mums doctor say "now dont you catch a cold or youre gone" "dont get a cold coz the cancer will spread" Its ridiculous. Yes you do need to stay healthy and youre immune system is low and more susceptible to bugs but people continue to smoke, drink, eat fatty foods, go to work, go to parties etc during cancer and they're ok. I truly believe there is not a whole lot you can do to make it worse or better. So maybe if he hears it from a professional he might take notice. I dont think the Doctor would have told him to lock yourself up for the whole treatment. People dont get through cancer that way. My Mum lasted 8 years longer then she expected and I am certain its because she took on the attitude that she was " 'living' with cancer". Also, the cancer clinics offer all types of support services to patients and their families, ranging from domestic help to counselling. It might be worth a look at? Next I would say what aout writing all your thoughts and feelings into a letter to your hubby? This way its not a conversation that can be interrupted or dependant on his mood. You can write it all down how you love him so much and it breaks your heart that hes going through this but does he understand that you all are going through it too and the best way to get through it is to stick together and support each other. That if the worst case scenario happened and he lost to the disease wouldnt he want the family to have happy memories of their lives together. My Mum left us so many happy memories even during her treatment.Its getting us through losing her now. So if you see what I mean, write it all down and let him read it and see what happens. Hopefully it will make him see that for him to beat this disease he needs to take charge of his emotions. He is letting the disease rule him at the moment and its giving it power! Having said that, chemo does weird things to the patient and some of his moods are beyond his control, although as you said he was a moody person beforehand anyway. He is able to take anti-depressants during his treatment but they dont offer them to you unless you ask. This wont have any negative effect on hs treatment. In fact it can have the opposite, because he would feel better he would heal better too. Power of the mind is an amazing thing. Also, with your kids have a regular meeting with them where you all sit and discuss whats on their minds, a place to vent, to cry, to laugh, to understand each other. Do not be afraid to ask for help, when people ask is there anything I can do for you, say Yes! And more importantly take care of you! Dont feel guilty that you have some time out. One hour a day or one day a week. You need to. You cant afford to get sick, have a breakdown etc. For people that dont support you or understand you cut them off until you can handle them better. You dont need it. Your husband, its anyones guess whats going through his mind and why he is being the way he is, of course he deserves all the sympathy and support in the world. What a terrifying place to be in. But he has the easy part as far as he gets the sympathy easily no matter what. His cance ris his get out of jail free card so to speak. But as I said earlier you might as well have the cancer yourself because its "in your life".."it is your life" and that can be worse in the sense that a cancer patient csn lay down when they are tired or sick. You dont get that rest because youre well and "you dont have cancer". Oh I hope I have made some sense here. As I said, Im no expert, just someone who has gone through what youre going through and trying to relay some of what it was like and understanding exactly what youre saying about how youre feeling. I hope something from what I have said helps you o at least gives you some ideas on what to try or gain comfort in knowing that youre not alone in what youre feeling and that you are completely normal. Much Love to you. 🙂

Re: Anticipatory grief

Uncle_Horses — Thu, 11 Jun 2009 15:41:26 GMT

It is all over now and the anticipatory grief has turned into real grief. My wife and soulmate has finally succumbed. She was an unbelievable woman at no stage did she get angry or say why me. She never asked for a timeline as she saw that as some sort of finality to her not knowing meant that it was never going to happen. In the end it really did happen very quickly. I was the one that got angry with the world and said why us. Our plans are all gone. Although we were lucky at least she was able to see our first grandchild who was only born five days ago. So much joy and so much sadness in ony a couple of days.

Re: Anticipatory grief

larn75 — Fri, 12 Jun 2009 03:30:09 GMT

Dear Uncle Horses, Sorry to hear of your wifes passing. She sounds like an incredible person. What wonderful news that she got to see her first grandchild, it must have been such a joy for her. My heart goes out to you and your family. Larn75