how to "deal" with all of this?

[Phil's wife]

I have wanted to post this several times in the last few months, but decided against it for many reasons. I know all of us struggle with this disease and watching our loved ones go through this very difficult trial. My question is HOW...how do we go about our daily lives day after day with strength for the next day? I know the right answers - and I work hard to do them each day - I study my scriptures, say my prayers, keep a smile on my face as much as possible, surround myself with great family and friends who support us and thank God for what we have had and every day we have now. But underneath all of this is still too much pain to even think about. I don't allow myself to go to those depths, but wonder if it will crush me one day when it piles too high for me to cover.

Just when we felt like we were over the ALS shock from earlier this year, Phil was diagnosed with stage 4 renal cancer. There is no cure at this point, only hopes that treatment can stabilize what he is left with after they removed the affected kidney.

Not sure anyone has an answer for this, or if there is anything else I can be doing. I worry about the kids too, for I know they see me not upset or crying, is this a good thing or bad? I know it should not consume us or diminish the days we have left, but when do we give ourselves permission to grieve, after it has passed?

All of this is a personal choice and not everyone handles it the same, nor would everyone like to handle it the same....but if anyone wants to share how they deal with this, maybe us newbies could learn something.

God bless all of you and your families,

Stephanie

 

[abbas child]

Dear Stephanie,

Your grief is already there and is warranted. How is your husband dealing with this new blow? When I read your post, my husband (whose name is also "Phil") was on his way to take care of transferring me, and I asked him to read your post. Well, after doing so, he said he couldn't answer you in a half hour and would need a lot of time to think about it. He's my "wise one" who has been my spiritual leader all our time together. So, I told him my thoughts...

If I were you, I would cry with your husband, together sharing this new part of your journey. The widow of an ALS patient, much older than I told me she wished her husband had shared his thoughts more with her... but he was trying to protect her. That caused me to tell my husband and get his input--he wanted me to share with him. I imagine, although of course we are all different, it would be good for your family to cry together.

However, then "regroup" for the battle. You can't stay in constant tears, in other words. You will need to be able to care for your husband and your children. I believe that crying in front of them as long as you don't totally lose it, is not going to hurt them. Being only a rock showing no grief is not going to help them--my opinion, but based on other's experiences as children. If you don't cry or show grief, they may feel it's "off limits", which isn't healthy.

Stephanie, you know, you can also go to the Christian thread (found in the PALS Support section) and ask for prayer. I will be praying for you, Phil, and your children. In your shoes I'd be praying out loud throughout the day asking the Lord to help, thanking Him for help, and leaning hard on Him.

Praying and sending a hug--
Ann

 

[Miss]

Stephanie,
I wish I had an answer. Some days, I feel like I have a handle on things. Most days, I feel on the edge of the abyss. Like you, prayer sustains me. As for my children, I have no idea how they are doing. We talk about the disease and it's effect on all of us, but I'm still not sure how they are really handling it. You are in my thoughts and prayers. Please call me anytime you need to talk to someone going through some of what you are dealing with. I'm here.
Missy

 

[tdamess]

you have the right to feel thing you do good days and bad days will always be there

 

[lms9258]

Hi Stephanie,

I have found over the past few years dealing with my mom's 2 diseases (ALS/FTD), that I seem to have a "built in" grieving process. I too wondered if it was all going to crush me at once. Then, I noticed something a few months ago. It happened right after my mom was told by her doctor "no more food or liquids by mouth". I seem to go through a period (a week, sometimes longer, depending on the "new" loss), of emotional upheaval and grief. Getting the diagnosed (both of them, 2 years apart), encompassed many, many losses over time, and I finally realized that this gradual grieving must some how be protecting me from too much all at once. I do cry sometimes--alone, but not nearly the break down one would expect from dealing with all of this horrible stuff. It's like "someone" is providing steps for me along the way, so that I DO have the strength to keep going everyday. I'm hoping that this protective mechanism--grieving as we go--sustains me til the end, so that I CAN continue to do all that is required of me now, and in the future.

I too try to keep a smile on my face for my mom. But there are times (though few), that I have cried, or talked to her about all this crummy stuff--and she is there for ME! I don't know how old the kids are--but I agree with Ann, that crying or having any kind of emotional response in front of them will not hurt them. This disease affects all who are involved, and unfortunately causes a lot of pain.

I hope that maybe you are experiencing some grief relief along the way, because it really does seem to lighten the load. Please know that it is okay to feel your feelings, and they will not crush you. Trying not to feel them might.

Best of wishes to you and your family,
Laura

 

[DCL1964]

Stephanie,
It sounds like you have a very good support system. I think you should let your children see you crying from time to time. It sends them a message that it's ok to be upset about your circumstances and it may bring you all closer together. I'm very sorry about your husband. I lost my father to cancer 5 years ago and I wish the people who told me to stay strong would have shut up. People need see how much you're hurting from time to time to remind them you're only human and you need them around you.

 

[LizT]

Stephanie-
I have found that I just feel the feelings as they come. I have the same concerns as you, and wonder, when all is said and done, if its all going to come out at once. I dont have a support system (off of here, that is...) and i have a difficult time dealing with my emotions anyway, so its actually dangerous for me to have a build up of any type of emotion. I try to let just enough out whenever i feel the need to. even if this means that i am sobbing uncontrollably while im giving my PALS a bath or a feeding or anything. Ive explained it to him, and he's ok with it. He gets it. He hurts too, but he has a better hand on his emotions than i do.
i believe the grieving process begins with the diagnosis of this disease, and not when death occurs. Sometimes i think this is a blessing, because then, sometimes, we can be happy for our PALS when they go because they are not having to live this way anymore.
As for crying in front of your kids, i agree with the others. Its good to show them that you are hurting too, and that you cannot always be "the rock". But id also say that you should try not to be so upset that you are not in control anymore while in front of them. Of course this happens, and its ok if it does. I would just try to prevent it from becoming a habit. How have you acted about other situations in front of them?
Im very sorry about your husband and your guys' situation. Wish there were something more i could say or do. please continue to post on here so that we can help you through this.

 

[brooksea]

I am terribly sorry about Phil. I can only offer you my support through this wonderful forum. I have no words of wisdom. We are all human and can only take so much at one time.

 

[strikeout]

Sent you a PM, Stephanie.

 

[cris]

Honey...God is giving you the "steps" and He will continue to be there throug it all. Let the kids see you cry ( with-in reason). But don't let it ruin the time you have. Learn to laugh throught he tears, you will find they (laugh more, tears less) will come with time. My PALS Earl ended his battle recentely and we found that after 4yrs of slowly grieving...we were able to stand and face it all with the Lord by our sides.

We have 3 kids. When this started they were 9, 7 and 5. They are now 13, 11 and 9. They have grown so much in the last yrs. Not in the physical way. They are caring compassionate people. They will learn a great lesson of how to love and care about others. Our 13 yr old was one of Earl's caregivers andf he shared the tears anger and laughter.

The people here on the Forum are Wonderful! They will offer you great love and support of someone who truly "knows" what you are going through. This is something that each has to deal with in their own way, but being open is a good way to start.

God Bless and many prayers and hugs!
cris