Anticipatory grief

[ArnZo_carer]

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

[Uncle_Horses]

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.  

[Sharon55]

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.

[clo]

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

[Kaz0201]

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

[Sharon55]

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.

[joec]

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.    

[Uncle_Horses]

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.

[Susan]

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.  

[Uncle_Horses]

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.