Topic: Grieving in advance?

Hi Everyone,

Looking for advice again from people who understand. We found out about 8 weeks ago that Dad's CC is terminal - despite a successful op, it has gone into his glands and he's been told that a palliative course of chemo is all that they can do now. 

Noone knows how long Dad will have - the Doc says 1-2 years maybe, but definitely not 5.  I know from the posts on here that this is a relatively long time, and I am so grateful that there is at least a chance, if not a definite one, that we will have a few more years with Dad.  I do recognise that this is a blessing, but then at other times I just think FFS, why is this happening at all? There are moments when it still feels dreamlike.  Just the other day I woke in the night and truly believed that it was all a dream, and that I had slipped back into my old life, the pre-cc one where everything was great.  When I woke properly and remembered that it wasn't, I felt so pathetically desolate.

I feel like I am going through the grieving process already.  I feel such an unbearable amount of sadness and sometimes anger that Dad is leaving us so early.  As the weeks pass, I feel as though I have come to some acceptance of the inevitable, but the sadness lurks everyday, always within view.   Some days I feel alright, others I can feel tearful and hopeless for days at a stretch.  Everything is affected and changed.  Sometimes this grief just seems like an impossible task, and I feel as though it will never end, and only worsen after Dad passes on.  On better days I try to imagine happy times in the future with the rest of my beloved family, which helps a little.  But I am afraid of how sad I feel already, as well as being deeply afraid of the future and of looking after my mother and sister. I don't want to let them down. What if I can't cope? What if they can't cope and I don't know what to do? I'm scared.

Is it possible to begin the grieving process now? Does anyone think that this period can help us to prepare for the death of a loved one, and if so, can anyone share any advice on how to make it through? I'm not sure that I can bear to feel this way for years and years - surely there must be a way to make peace with this, even in some small way, so that I can get on with enjoying the time we have left.

Re: Grieving in advance?

Hi Claude1,

What you are experiencing actually has a name.....anticipatory grief.  I know exactly what you are going through since I've also done it.  We've discussed it numerous times on this site. 

If you want, you can use the search forum and enter "grief" and my author name "Cherbourg" and read some of my posts about it.  You can also google the term and you will find some good websites.  The hospice and American Cancer society have sections you can read. 

I really thought all of the anticipatory grief would prepare me for my Mom's death but it didn't.  Grief is one of the hardest thing we ever do in my opinon.  It's intensely personal and there is no timetable.

I know how hard it is to live in the here and now after a diagnosis of CC.  All I can tell you is to create as many memories as you can while your Dad is still here.  I wish I'd made a recording of my Mom's voice.  I miss it so much.  Take tons of pictures and take time to let him know how much you love him.

You aren't crazy and what you are feeling is perfectly normal.

We are all here for you on this journey.  Come here often.

Hugs, love and lots of prayers to you!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Grieving in advance?

claude1 - all I can say is I am SO with you.  We're in almost the same situation with my Mom, except that it looks like she has less time than your Dad.  Her recurrence was diagnosed in late June, and after 1 round of gemzar it wasn't doing a thing.  She's on home hospice now at my sister's house, where I spend as much time as I can, including one or two overnights a week to give my sister a break.  My Dad, who has vascular dementia, has also moved in with my sister.

I have so many of the same feelings as you do.  Some days I'm actually ok, other days I'm not sure I can function as a normal person.  My heart literally hurts when I think about the future.  Someone recently posted that after their loss, they defined time with "before Mom died" and "after Mom died."  I am already thinking like that, as well as "before Mom got sick."

I find that I will have a rough day, and once the hubby and children are in bed I have a super-long cry, sobbing on the couch.  Then I feel some relief, go to bed, and am usually good without another pity party for another week or so.  Most nights are tough though, that's when my brain goes into high gear.

Like Pam said, we're really trying to make memories now.  With all the visitors she gets, I just sit in the next room and listen - so many of them talk about the old times, and I've heard lots of stories that are new to me.  And Mom seems to realize the importance of stories - she's retold the story of how she and my Dad met almost 50 years ago, stuff like that.  We also talk about and listen to music, old favorites and songs that make us remember a certain trip or time period or funny story.

Do you like to write?  This may sound wrong to some, but I've been working on Mom's eulogy for quite awhile.  My Mom's already requested that each of her three children speak at her funeral.  I wanted to do her proud, make it good, and really say all I think she'd want to be said.  I started with just a list of memories, adding to it as something popped into my head.  It's been hard, but I also find it extremely cathartic.  But that's just me, writing is an outlet for me.  I reread it often, usually adding to it, and smile at so many of the memories.  I mentioned it to my Mom and she asked to read it.  I'm sure she'll edit it with her red pen!

"Anticipatory grief" - I had no idea it had a name.  Though I'm sad to hear it doesn't really prepare us for the actual grief that is to come.  Hard to imagine feeling worse sometimes.

~Kim
my mother lost her 16 month battle with CC 9/26/10
"Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined."

4 (edited by Cherbourg Mon, 30 Aug 2010 17:54:06)

Re: Grieving in advance?

Kimmie,

My Mom had planned her own funeral....I wrote about it here.  The night she told me I would give her eulogy and that Daddy would sing I just about threw up.  For months driving between New Bern NC and Greensboro I would be alone in the car and practice.  I would get the first line out...'I am Helen Davis' oldest daughter"  then burst into tears...

I can tell you that you will find a deep strength inside yourself and will do great.  I was able to speak for almost 20 minutes about my Mom and her journey with CC.  My Daddy sang at her funeral and her two oldest grandsons also spoke.  It was a beautiful testimony of how much she meant to her family and her church family.

I promise you....you'll do fine!

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Grieving in advance?

In addition to the great response of Pam, I would like to mention our fantastic Dr. Giles, a licensed psychologist, who always is there for any of us.  You might want to send him a note.  You can find him under "patient support", scroll down to "Dr. Giles".  Often I catch myself reading his responses and always I come away feeling a bit more enlightened then before. 
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Grieving in advance?

Kimmie, Teddy and I are at the same place you are. Claude I have written this before but do believe I don't want to look back at my month or so with Teddy as wasted time filled with anxiety and grief instead of a precious loving time making new memories. Convinced myself that I am going to get through this by being as strong as I have been over the last 5 years. We have had a house full of company (family) for a week now and other visitors as well. His service (Celebration of Life) is planned and most of it he took part in and even told me to wear red, when I said I didn't want to wear black. Behind the scenes others are helping in the planning. My daughter is making centerpieces for the tables. Others are taking part by reading a couple of things that I know the children could not read. Like a poem I had written 8 years ago about his life, on his 70th Birthday and a letter my Granddaughter wrote to him that is unbelievable.  Everyone handles these things differently as while I am doing this Teddy's daughter is pre-grieving. I HOPE YOU FIND YOUR PEACE WITH THIS AND KNOW THAT WE ARE THINKING ABOUT YOU AND YOUR FAMILY.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Grieving in advance?

Claude , You are not alone, as I write this my wife who is 49 and has had cc for over 5 yrs [ i can;t believe it as i write it ]  is now today starting her 8 th yes 8th course of some type of chemo.   history too long and complicated for post  however tumors [13 of them ] have all grown aggressively in past 2 months. I have also rode the roller coaster of emotion like many others and some days can not believe she is still w / me and other days fear raising our 14 yr daughter alone .   Some may say  and I know I am fortunate to still have her w / me , but watching your beautiful wife suffer day in and day out can be very draining and confusing on some days. The drs have no data to treat and at this point are just throwing whatever chemo they think  might slow it .    I pray for you and your father because at some point that is all you can do  ,  my wife is in GOD 'S hand and believe me I am not a very religious person but I do know what it is to be powerless.    GOD Bless

Re: Grieving in advance?

Claude,

My mom died September 13, 2009.  To be completely honest with you, I dealt with more grief before she died then after she was gone.  Life as we knew it was over the day that they told us that she had cancer.  The constant worries wears so much on your body and mind.  Somehow we always make it through, but it is okay to be sad and angry and all of those emotions that you are feeling, this is a tough journey.  We are all here for you, and understand how you feel.

Amy

Re: Grieving in advance?

Dear Claude,
               I am very sorry to hear about your father's prognosis. Of course, with cc it is very hard to predict how long your father may have with you. He may do a lot better than the doctors think and there may be other treatments he can benefit from.
               There is so much time for sadness later. In my view this is the time to be positive and to reflect on how much your father means to you, to think of all the things you want to say to him and to plan how you can make the time he has left as happy and as meaningful as possible. I realise you are in shock at the moment but in a little time, hopefully, you can avoid thinking of the future and live in the present, creating beautiful memories that will help to sustain you all in the difficult times that may lie ahead.
              With very best wishes,
                    Pauline

Re: Grieving in advance?

Claude,

I could nearly ditto what Amy said. My mother passed away on May 10, 2010, the day after Mother's Day, 15 months after being diagnosed with cc. We knew she was on the edge those last 6 weeks. I was with her in CO when her oncologist told her they could do no more.

I spent the last year grieving with every CT scan that came back showing more growth, with every set of bloodwork that showed elevated cancer markers, with every change in chemo drug because the prior one quit working. My sister, on the other hand, was really unable to deal with each setback and chose to keep my mom "healthy" in her own head. Not wrong, just the way she dealt with it. She is now having to deal with grief of loss and is having a much harder time of it than I am.

Now with my mom gone, I am realizing like Amy that the vast majority of my grieving was before she past. It was in the process of losing her and each setback. Those last 6 weeks we all knew the inevitable was coming down on us and her state of being was no way to live. My faith has also helped this tremendously.

Anyways, just wanted to let you know that I understand completely what you mean by greiving in advance.

April

Re: Grieving in advance?

my mother age 65, was just given < 1 year to live,

i find my self hysterical and crying most of the time, especially when i take showers, or after i talk to her on the phone, thinking about not being able to call, i am very bad when i drive home from work, and evenings just kill me...i am turning 40 in october, and just cancelled my party, i just do not feel like celebrating, everyone looking at me all happy, and i would just be crying....i cannot cope.....i start yelling at my family for no reason, and all i want to do is sleep. any good books to read please pass them along to help me get through this journey, and enjoy the time i have left. mom lives in ny and i live in maryland will just adds to my guilt....

Re: Grieving in advance?

May I just add my shared sadness at the difficulties you are having dealing with the grief and sense of loss. It is the hardest thing I have ever been through and I've been through a lot including my dad have a long illness and passing away because of colon cancer and my brother being murdered for no reason other than robbery, but my husband having CC is tearing me apart. Every day there is something new that we don't understand. I feel guilty planning for when he's gone and guilty for wanting him to stay. We were only told he had 90 days when he was diagnosed and we are 60 days in. I can't say if we are really close because his weakness and tiredness wax and wane. His itching comes and goes. His shakiness seems to increase. His mental attitude is like a roller coaster. I have a strong faith in God, but this is testing my personal limits. I have wonderful support from family and friends, but I can't escape that I am losing the love of my life. I pray that you find some comfort in the process. Blessings to you and your family.

Re: Grieving in advance?

slittle1127, your comments and comments of posted prior to yours, really struck a cord with me, for I related so well to what you have expressed.  My husband was diagnose in Jan 2007 and passed away in Aug 2007 (on his 64th birthday).  I had many people tell me how well they thought I handled my husband's death.  What they didn't understand was that I had been grieving since his diagnosis.  We were initially told that they thought he had pancreatic cancer and my heart sank.  I held out hope that maybe they wer wrong, but when all the tests were completed and we were told that he had CC and that it had spread to his lymph nodes, stomach, and lungs, it was devastating.  He had never been sick, was an avid runner, did all the things they tell you to do to prevent cancer.  He was really blind-sided by this.  He tried to fight it with chemo to no avail.  It just gradually took it's toll.  Iwatched him go through bouts of pain, getting very confused, and weak.  When he did pass, I felt so guilty because of the relief I felt at not having to watch him die by inches any more.  Not a day goes by that I don;t miss him, but I find comfort in knowing that he is in a better place and that he is not suffering anymore.  It is a test of your faith, but Hang on tight and it will carry you through.  I truly pray that you will find peace and comfort through your faith.

Re: Grieving in advance?

LD, you said it so right. I feel just like you did and we are not done yet with perhaps weeks to a month to go. I hate seeing such a vital, vivacious man who is so weak about all he can do is change chairs. This is not living and if he could really see himself as others are seeing him, he wouldn't like it either. But we go on and stay strong and honestly have not a thing to be guilty for. Caretakers should never feel guilty, yes? At any rate I loved what you wrote.  Today I try to give him a hair cut!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Grieving in advance?

Thank you so much for the words of comfort. It is so helpful to know how others survived the experience. We're almost a month from my last post here and we've had a few good days. He is weak, hasn't been sleeping as much this week, but has had bouts with ascites. We're almost 90 days in now and it looks like we still have some time. Thanks so much again for your encouragement. Blessings, Susan