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Barbie

Extremely helpful member
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Lost a loved one
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Weird thing happen last week, I took my son to therapy (that is a whole another story) . I was waiting for him to arrive, and I started talking to the therapist--now this is about him I feel pretty good over all--and my son shows up thank goodness. We decide as a group that I will stay in the session because I had started telling the therapist about my husband and ALS and our journey and how it is affecting our family. after about 45 minutes, I realize the entire session is about my husband and ALS. I cried for the first time in a very long time when my son said he just wanted it to be over. :sad:

I ended up making another apt just for me, but what was odd was that after I left, I felt sad again in an overall way. maybe I have been in denial a lot about ALS and what is going on, but I have not felt sad for a long time. maybe talking about it is not the answer--I don't want to be sad. I thought I would feel better after I talked but it was the opposite. I have been weepy for several days in fact, and I think it is getting worse.
 

ottawa girl

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PALS
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Talking about it, with a third party, is good. You need an outlet. You're likely like a volcano, waiting to erupt.

You can't keep holding all of your emotions in check, cuz that will eventually lead you to feeling numb. Not a good place, and difficult to recover from. Of course you're sad! But you've been spinning all of the plates for your entire family; you haven't had time for your own feelings.

Letting things out is not a luxury, in my mind. It's a necessity, and an integral part of our human journey. So, go to therapy, hang your super woman cape on the coat rack as go enter. You can put it back on when you leave. Don't be surprised if it feels a little big for ya!
 

panguinjen

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Barbie,
I went to a therapist the entire time Rog was ill. I'm so glad I did; it was weepy, but it was also a chance to get support and validation. I think this helped with the calm that I felt at his passing and still feel. She helped me do a lot of the grieving that we all have to do and helped me deal with the anger I felt at having him die so soon. The other part she helped with is boundary setting and asking others for help. I could say the ugly feelings and she helped with those so I didn't wear out my friends or take things out on Rog. I know I cried every day that he was ill, sometimes a few tears, sometimes buckets and crying in her office was the safest place to be...I hope you can follow through with her....the going may be rough at times, but the pay off in the end will be wonderful!

Sending you hugs and warm prayers,
Jen
 

sallyb

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Jul 19, 2011
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58
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Ire
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Ire
Oh Barbie I'm sorry. I think that the day to day stuff is so all consuming that if you are busy the grief can be buried a bit.. I know when i stop i feel such a heavy sadness that takes me days to 'shake off' enough so i can function. Talking about it can be exhausting and can make you feel worse, i guess because you do have to articulate all the pain and the loss. i wish i knew if all the talking made it any easier in the end-i'm not convinced!
I think we are all very different in how we approach grief and life in general and what works for one individual may not necessarily work for another. Some people with sufficient supports (family/friends) who will truly listen and support & who are not just repressing their emotions may be 'ok' with just this social support. Its whatever is going to help you through, there is no right or wrong way to grieve. We are all just trying to get through. To the elusive 'acceptance' or whatever that resembles. I hope you feel less sad (better just sounds trite) in the coming days. Take care.
 

Annie's Phil

Distinguished member
Joined
Nov 22, 2011
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302
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During the course of Annie's illness I always felt like I was trying to hit a moving target as her needs were constantly progressing. No sooner than I worked a solution to accommodate the most recent loss that the next loss would arise. Then what had been working no longer did and then I found myself scrambling to find a new system. It was like a futile attempt to stop a freight train - I kept running alongside the train but it just kept on barreling along.

I don't know if this applies to anyone else, but the unrelenting need to figure out what to do next in the face of Annie's constantly changing needs dominated my thoughts. The urgency of dealing with her physical needs and comfort took precedence over everything else - including trying to grapple with the emotional wounds of knowing that I was losing the love of my life. Without consciously doing so, I pushed things aside in my mind so I could concentrate on what had to be done now. I'm not sure, but Barbie it sounds like you might be having a similar experience.

The whole experience was surreal. I knew it was real, but it felt like I was living in a dream - the worst possible nightmare. I wanted to be strong for Annie so as not to add my grief to the burden she was already carrying. So until a couple of weeks before she died I never cried in front of her. I cried a lot every day. I cried enough to float a fleet of battleships, but I did it alone with my thoughts. That seemed to get me back in the fight for another round. I rarely talked with anyone about it because I knew that unless they had been through it they couldn't understand it. My office mate was a very dear friend and on a couple of occasions I suppose my grief was evident and so that precipitated a brief conversation about it. I remember him saying that it was like I had a deep open wound that couldn't heal. He meant that it was different than grieving for someone who's already gone, although you know it's coming. Perhaps that's how your son feels - that the pain won't get any better until the nightmare is over. At the time I thought he was probably right, but I can't say it's a lot easier now.

I still cry everyday, but the episodes are brief and I find it therapeutic to just let it out, but I still do it while alone. Usually after a few seconds my emotions get reset and I get back to whatever I was doing. It's like pressure building in a bottle that needs to be periodically vented off before it gets too high and the bottle explodes. I personally found, and still find, that helpful.

I agree with Sally, that how we deal with grief is a very individual thing. For me the only people I really care to talk about it with are other people who have lost their spouses because they're the only ones who can really understand what you're feeling. And you each completely understand when the other says something. Other people can offer sympathy, but they can't really understand it. I find a lot of what folks have to offer are empty platitudes and formulas that they personally know nothing of.

Peace and grace to all.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
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2,659
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Lost a loved one
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I agree with the comparison of this to an open wound that will not heal. For me-I guess the anti depressants are the bandage that keeps it covered so I can pretend that it isn't there. I think they have worked very well for me--and being able to talk here on this forum with people who understand. It seems that those two things work for me and a therapist is not what I need. My son needs to talk to the therapist, because he keeps it bottled up inside. He said to me "When I move out all my problems will disappear" LOL I wish it was so easy!

So I am going to work on keeping my wound clean and covered, so someday it will start to heal. Of course we all know there will always be a scar ...

The therapist did talk with my son about natural anti-depressants, vitamin and minerals that would help him deal with his pain, since he is resistant to medication. I think I may try them as well. I will let everyone know what they are after I get more info next week.

:)
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Barbie Girl, Its ok to cry. Sometimes we just need to let it go to move forward. Think of it as tears are a catalyst that propel you to the next level, ya just gotta lighten the load...And so they flow. And you move closer to who you are becoming. Its not a sad thing. Its just a different thing....Love you girl! You are a stong woman with a loving heart...<3
 

Pkmado

Active member
Joined
Aug 11, 2012
Messages
48
Reason
CALS
Diagnosis
07/2012
Country
US
State
CT
City
Niantic
We develop these coping mechanisms. Everyone copes differently. As new challenges present themselves we adjust our methods to meet the new most often unbearable realities life throws at us.Many CALS and PALS have developed the same coping abilities as our troops and veterans or people who live in war torn countries, those who live in extreme poverty and as we have been most recently been reminded, terrible natural disasters. We develop attitudes that allow us to live with "new normals" no matter how difficult these realities may be. We are all just ordinary people living with extraordinary circumstances, doing the best we can with terrible consequences of that which we can do little or nothing to change. Hoping our efforts no matter how futile they may appear somehow make a difference in the lives of loved ones who are helpless to help themselves. One of the Four Noble Truths of the Buddha. "Life is suffering. Once we accept that life is suffering we can get on with the business of living." This is certainly brought to light in the world of ALS.
My heart goes out to all of those who have to most often set themselves and their PALs aside to consider children into the equation. We can only hope these children will look back on the struggles, suffering and sacrifices made by their parents under these tragic realities to carry many lessons learned into their future. Life is not fair, get over it like you have a choice. This is what we do on behalf of those we love. This is what we would want others to do for us should we fall upon misfortune. When all is said and done there is hope for a better tomorrow because we did the best we could on the behalf of others today. Selflessness is a virtue.
The idea that a solution always exist will not occur to these children. They will be better able to cope with an uncertain world where suffering is a part of life. Where we must learn to accept the unacceptable and still strive to find meaning and purpose in life as well as joy. In this will lie their strength. This is what the legacy will be. We can only hope.
 

MommyOreilly

New member
Joined
May 22, 2013
Messages
1
Reason
CALS
Diagnosis
06/2009
Country
US
State
MD
City
White Hall
Hi - Just got on this site and have been sifting through lots of blogs, comments, posts, etc. Everytime I read a post that relates so much to me, it is yours! My husband is 41yr and was diagnosed in 2009. We have a 10 yr old boy and 8 yr old girl. It has been helpful to read some of your comments so I just wanted to thank you.

Michelle
 

JamieL

Active member
Joined
Feb 19, 2013
Messages
51
Reason
Loved one DX
Diagnosis
02/2013
Country
US
State
Texas
City
Dallas
Sorry if this ends up being all over the place. Like others have said, grief and simply “dealing with it” is different for each person. I do think that bottom line is that you can’t act like everything is ok when it isn’t. Being strong and having moments of despair, grief and tears are not mutually exclusive. BUT, sometimes talking about it does NOT help. Sometimes, like Phil said, just a private moment to let the emotions wash over you, to FEEL IT, and to let yourself let go and cry is therapeutic and much needed. But a weekly appointment where you say the same things over and over to a stranger who means well but can’t possibly understand is NOT helpful. There is a reason support groups form- because you are in a place with others who genuinely understand your pain and walk this journey with you. It’s like a horrible club nobody wanted to join, but here we are. And, even within this club there are subsets. My PALS is my mom, not my husband. I guess that’s a fresh Hell I don’t even want to imagine. And I’m not the caregiver. I try to be there for my dad, but I can’t truly understand the daily struggles he endures caring for his slowly but surely dying wife. And HE couldn’t fathom how much worse (?) it would be if this happened in their 30s when they were raising young kids. Not that it’s a game of “whose situation is worse” or anything. But the relatability factor changes.
You are strong because you are strong. But you also know, and have said, that your husband has enough to deal with without you making him feel guilty and such. So you hold it together for him. You hold it together for your kids. Put on the brave face, let everyone feel safe and ok. But who does that for YOU? You’re human. You have been on this path for longer than most. When I hear people wish a new PALS /CALS a slow progression, sometimes I think “be careful what you wish for.” If we have to endure this at all, is best case scenario that progression is slow enough for us to make peace and say goodbye, slow enough for our PALS to make peace and maybe complete their “bucket list” but not so long that we end up feeling the way your son does? That you’re just ready for it to be over?
I told my best friend it is like being told your loved one is going to be put in a giant, clear tank that will slowly fill with water. And you will be forced to sit and watch them drown. Maybe the tank fills slowly. Maybe it fills rapidly to the top. But either way, the tank fills and your loved one dies. ALS is gut-wrenching. If being here is YOUR support and emotional release, and the meds take the edge off so you can fulfill the “have to’s” of your daily life, then so be it. I think you’re doing great, kid. 
 

CasaHopkins

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Apr 13, 2010
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IL
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Algonquin
My youngest (9 yr old) asks quite regularly if it's going to be soon (meaning the end). My husband barely gets out of bed anymore, is heavily medicated and has chosen not to do a feeding tube or trache. It makes me sad that my kids feel this way but she always adds that she knows it's whats best for Daddy, that he'll be put back together after he dies. I call the stage we are in The Land of the Dying and all of 5 of us (3 kids, me and hubby) are all in that place. We are visiting and my husband is staying. It's a place we have been for too long. It's a sad place. As much as they love their daddy and I love my husband, we all look forward to moving back to The Land of the Living. Stay strong mighty warriors!

Love and light to all of you!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
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OZ
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AU
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lala land
I told my best friend it is like being told your loved one is going to be put in a giant, clear tank that will slowly fill with water. And you will be forced to sit and watch them drown. Maybe the tank fills slowly. Maybe it fills rapidly to the top. But either way, the tank fills and your loved one dies. ALS is gut-wrenching. If being here is YOUR support and emotional release, and the meds take the edge off so you can fulfill the “have to’s” of your daily life, then so be it. I think you’re doing great, kid. 

WOW that hit home so completely for me!

Barbie, your real sharing here of what you go through, then the compassion and help you give to others always hits very close to my heart.

I think the type of support we need changes along the way except we will always need this place, and we just bumble along as best we can and accept what support we can find and somehow we will get through, even if we come out the other end crawling on hands and knees!

Barbie I think that we all are in some kind of denial even when we have accepted, are caring for our PALS, are supporting our family and are keeping everything going. Opening up honestly to the full brunt of what is happening is definitely too much for me to cope with, so I think it's a coping mechanism that isn't a bad one.
We do keep adjusting as things progress and the targets move and everyone says we are coping so well and we smile or turn away or whatever, as we know that we only cope because we have to and it's not what others think it is.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
I know how you feel Barbie, therapy is not for me.
the idea of beating myself up in therapy with this reality to make myself cry and feel seems unproductive. I know what faces me(us) every day, there are no illusions .
the few times I have shed tears it doesn't take long before I think this isn't helping a dam thing and is a foolish waste of my time. and it sure wouldn't help my husband if he caught me in tears over it. and it sure doesn't change anything.
Visiting here makes me sad, which is why I am not seen much, BUT it somehow also helps a lot knowing I am not alone. maybe you guys are my therapy.
 
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