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Apr 7, 2007
Hi All -
I want to share with you the following, because I have realized through my Pastor - and a dear friend from this forum Where my Brain / heart is at as I try to be supportive as a CALS. Please read the excerpt , and pursue the rest from the link... I find all of you as a support network for this Anticipatory grief - and so glad you all are so kind to share openly.

Anticipatory grief is the name given to the mix of emotions experienced when we are living in expectation of loss and grieving because of it. Anticipatory Grief is particularly relevant to those who have received a terminal diagnosis and for those who love and care for them....
Whether our grief is anticipatory or grief due to the death of a loved one, there is a very real need to talk to someone about the roller coaster of emotions we are experiencing. This however is not always easy to do, due to a number of reasons which may include; trying to remain strong for the patient, trying to remain strong for the children, trying to put on a brave face for other family members and friends.

Counseling, though readily available, is resisted by many, who believe that no one could possibly understand what they are feeling, nor do anything about the outcome.

The only trouble with counseling is that it may not always be available when you need it. I highly recommend keeping a personal diary for these occasions. During the two years of my husbands terminal illness, my diary was without a doubt, my strongest coping tool, I wrote in it daily, often in the form of poetry, pouring my anger, my fear and my heartache on to the pages. Periodically, I would read back through it and through this I came to know myself very well - later I could see my strength coming through.

Excerpts and poems from my diary now form a major part of my book “Lean on Me” Cancer through a Carer’s Eyes.

Article written by: Lorraine Kember – Author of “Lean on Me”
My husband and i have been married 42 years. We are 60 years old and planned our retirement years. It's not going to be the way we planned. I feel like part of me is dying.
The stages - different for all.

By now most of you probably recognize the term anticipatory grief .... there's a loss coming, you know that but you don't know when it will happen. When you heard the diagnosis was terminal your world turned upside down and you've had to kick stuff out of the way or assemble your life the best way you can.

PALS, CALS, their children, extended family and friends they all cope differently, there are common stages, but everybody is so different, this site has some great information on the stages.

Beyond Indigo
I am so sorry judylyne, it is all so overwhelming, and it hits you like a ton of bricks!

My husband was diagnosed 4 years ago, we had a four month old daughter and a seven year old daughter, it all seemed so unfair! We were both confused, angry and wondered why? Why now when everything was so perfect.

Now that I look back, I wish somebody had told me: GET OVER IT! (although I would have been more upset) as harsh as it sounds, We lost a lot of time between the anger and depression. Life has a way of throwing you curve balls, adjusting is the trick, changing your expectations. It really is not that easy, but accepting that it is beyond your control, and now the plan needs to change, as you said a part of you is dying, try to let it go. Time for plan B as my husband says with a wacky smile on his face!

From all that is, I have learnt that there are always good things that can arise from all the negative, it is a balance, we just need to learn to look for the good, when we learn to do that it is as if the ball rolls in that direction and the good things become more clear, the same is true if you reverse it, look for the bad and the bad things seem to prevail.

Enjoy the time you do have together.

Hello Judylyne,I can certainly relate to the way you are feeling.A diagnoses of Als is like a kick in the stomache.When my husband was first diagnosed i also felt like a part of me was dying.The loss of your future dreams and plans together and at the same time your husband is not the same physically or mentally and that is changing everyday it seems.We have been married 38 yrs and he was so active and such a strong man.Now he dosnt even look like the same person and cannot do hardly anything for himself anymore...I do not find it unreasonable for you to allow yourself time to greive for all your losses and his.I think that is perfectly normal and it takes time to absorb and come to terms with what is happening in your life.Please be kind to yourself and feel what you feel and give yourself permission to be angry,sad....I believe that the only way out of it is thruough it and when you come to the other side you will be able to move on to the next stage. Hope this makes sense.......Gina
Hey swmn ,where do you find all these great articles....i read the whole thing and boy it sure makes sense now we can put a name to our feelings...instead of wondering if what we are feeling is normal and the part about the grieving and the roller coaster of emotions...they got a name for it i like that! if i can just remember how to spell it or pronounce it i can tell all my not so friends to leave me alone cause i am suffering from Anticipotory grief.....people allways like it better when you can give em a name works better than i think im lossing it or #$^&&**((* off im having a rough day....sorry dont mean to make light of it .Hope everyone on this site reads it because it is full of insight......Gina
take another look

Hi everyone -
Well as my pastor and a dear friend from this forum..led me down this road of defining my feelings, it was revealed to me that I am also dealing with -( pronounce this one...) "Disenfranchised grief" - Because I am not a direct spouce to my friend PALS, & we have only known eachother for 6 years - but our friendship has so many dimensions between professional goals and personal interests.

So if there are any "guests " out there who think they aren't worthy to ask questions of this forum, well - this could be why.
I can't begin to try to assume the role of a real CALS - but I try to be there as much as I can to support my friend and his wife. Disenfranchised grief is when someone who is close to a terminal friend, but others would not know or acknowledge the struggle this person has with the deterioration being endured by this "less than related person..."

My emotions are spinnning - I feel like if I can't help more, I will bust. I think maybe I can help slow / stop this f$&*#ing disease if I help lift the burdon from their daily lives

I don't expect replies, but if you are a friend of PALS and you have come this far, you should consider what you truly can do to help - because - CALS & PALS will be SO happy you have taken a risk

Thanks Gina for all your encouragement :-D
Hey! you have helped me as much as i you!And your last post is great and will help so many others to help and reach out and take that risk!You are doing a favour to all pals and cals and i thank you for that......gina
disenfranchised grief...

According to Kenneth Doka, disenfranchised grief is grief that is not openly acknowledged, socially accepted or publicly mourned. Moreover, the relationship is not recognized, the loss is not recognized or the griever is not recognized.

Doka believes that mourners whose grief is disenfranchised are cut off from social supports. With few opportunities to express and resolve their grief, they feel alienated from their community and tend to hold onto their grief more tenaciously than they might if their grief was recognized.

The four aspects he presents as necessary for successful grief resolution include: first, accept the reality of the loss; second, experience the pain of grief; third, adjust to the environment from which the lost person is missing; and fourth, withdraw emotional energy and reinvest it in another relationship.

The disenfranchised grief that close friends of PALS endure interferes with these tasks because they struggle to communicate their feelings to their PALS. These friends have to find a way to confirm their friendship without feeling they are intruding.....

If you are a friend of PALS, you need to step up and help without being asked.
If you think your friend could use some help - then do it! They will be so happy you stepped up!

Hi all, The world needs more people like you. When my sister Roberta was going downhill, her son and husband were having an awful time keeping up. Roberta's son Christopher played baseball. When people started noticing that Roberta was ill and realized how bad it was. The mom pitched in and started helping with her care. Homecare was only in a few hours so when Sandy had to go to work and Chris to school the mom's would take turns coming over if homecare was not there yet. They worked out a weekly schedule. I nominated them for a humanitarian award after Roberta's death. They received a newly created award in North York presented by the Major, Mel Lastman. We called them " The Baseball Moms" and they were awarded the "Roberta Green humanitarian award".

The world is a better place when people care. Grief is Grief.
ps. the reason I usually put in a thumbs up in my post is that when Roberta used to go to Chris's games her way of cheering was the thumbs up. She did thumbs up a lot.

God bless you all, you are all amazing. Norma
Thank you, each and every one of you, for sharing this great insight. These are not easy topics to discuss and the rest of us appreciate your openness. thumbs up to you all! Cindy
I want to thank everyone here. It helps to know other people know how your feeling. When I was a hospice nurse I was told don't cry in front of families or patients so I learned to control my feelings until I was alone. The problem is now I cry alone because I don't want to upset anyone. I don't want to depress anyone but I'm having a hard time getting to plan B.
I am so sorry, Judy. There are no easy answers when the grief becomes overwhelming. I wish i could reach through the computer and give you a hug right now. Cindy
plan B

Hi Judyln-

I just wanted to let you know - your not depressing anyone - plan B is a hard thing to accept - especially when there wasn't a plan B therefore - plan B sucks.
My friend PALS had really got the ball rolling in our school as a principal, doing his job the right way - which a lot of administrators don't necessarily jump the hurdles he has - because they are quite high! When he can no longer be our leader - we get to plan B. I'm scared of plan B.. I will do my best to stick with the modified plan A, where he's leading us w/o actually being physically in the building.. I'm scared of plan B, and sad about modified A...
swmn, great article! Thank you so much for sharing it with us. There is so much to it, I am not finished yet. I have enjoyed every bit I have read. The poems are awesome. I entered some in my journal. Again, thanks a lot, and may God bless you!

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