Status
Not open for further replies.

NeedCourage

Active member
Joined
Feb 22, 2014
Messages
73
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
I've tried so hard to keep it together these past 8 months or so ... but yesterday I started to cry in front of him and he held me quietly and said, "It's ok - it's normal ... there would be something wrong if you didn't cry. You've been doing such a good job..."

OMG - him comforting me. I'm still crying this morning. I feel overwhelmed with sadness and grief. I was fairly collected but I think the disappointment in Cleveland with Dr. Onders and the DPS surgery decision (NOT to) just pushed me over the edge of sorrow.

He's dying (I never said that) and I'm watching it and I'm already on an anti-dep. and a anti-anx. med. max doses. Depression has been a lifelong struggle. And I'm so damned sensitive and don't know if I'm doing what I should be doing to help him - or even doing it properly.... now I AM ranting and rambling.

I thought I would bust if I didn't let it out & tell someone - there is absolutely no one else. No one.

I know you understand and forgive me - even if I can't.

Love to all who are in this battle with me/us. Nancy
 
Dear Nancy- your pain is just what all CALS experience. A week after my husbands death, I am STILL second guessing what I could have done differently that would have had a different outcome! The truth is, we do the best we can- and our PALS know it. What a beautiful moment to be held and comforted by your husband- and what a gift you gave him! You allowed him to be the caretaker, if only for a few moments! I found myself often thanking my hubby for taking care of me to the end! Doing things like putting finances in order, giving me lists of things to be done in the house, yard, for the cars that he had always done, -
Rant and rave all you want, as you've earned it. You are so right that no one else is better to tell then sisters in this pain.
And we MUST forgive ourselves,for really there is nothing to forgive. We do/did our best and loved and were loved in return. That is a major thing,dear Nancy. Hugs to you today.
 
Nancy, A big hug to you. My heart is heavy that you are feeling so down right now. If it continues I would see your doctor about trying something new. The neuro I went to for mine treated my husband in the beginning so she knew the type of stress and anxiety I am dealing with. Still, it takes a lot for me to.sleep. Do you have anyone from church, a friend, anyone that can give you a reprieve for a bit? I live for my brother in laws visits just so I can run errands and not worry. We love you Nancy....saying prayers for , Steph
 
nancy i see this in jane eyes i know shes trying to hide it. i feel like what he is saying in a way. the way i feel please don't cry for me i will cry for you. i am going to a real nice place. i worked real hard to get there. i have love ones there waiting for me. i have no life lift in my body here. i will have a place for you on the other side and i will be wanting. no don't cry for me.
 
Nancy, I understand. When santa Joe did not qualify for the DPS, the reality of his death set in. Tears, tears and more tears. That is the one thing that would upset him the most. Seeing me cry. I would cry in the shower and called it "my shower of tears".

Holding your hand and sending hugs.

Debbie
 
Dearest Friends:
Cheerleader,
I am so sincerely sorry for your recent loss; it seems the tears are just endless sometimes. I am grateful that you shared your experience, especially in this time of grief. You comfort was sweet and heartfelt and I loved your idea about his having an opportunity to comfort. Forgiving self is a major thing and perhaps the most challenging of my life - even before this. Thank you, Sister Cheerleader, for your heart. With love...

Steph, Yes I am thinking an MD visit might be in order. And unfortunately the closest person or family member is over one hour away and they all work - so there is no one stopping over so I can run to the store. My dear Steph, thank you for your prayers - I humbly thank you for your concern. With love...

davbo, Hearing these words from a PALS was genuinely touching; however, they were so sweet that they made me cry! lol... : ) Thank you for sharing this insight into the adoring heart of the other half. You are special indeed. With love...

Debbie, Yes, the DPS had been my 'dream' for 4 solid months. He originally qualified at that time but the surgeon backed out. (story for another time.) So by the time we got to Cleveland the fast progression had done too much damage. So odd - there were many many years that I NEVER EVER cried! And now I have trouble turning off the sprinkler. I'll think of your "shower of tears" ... Thank you for holding my hand and I'm using up the hugs right now. With love ...

to all, Nancy
 
Nancy,

I have some very good friends who truly care about what my PALS (Darcey) and I are going through. But unless one has had to care for someone (and particularly for a loved one) as I am doing, they just won't quite understand. They want to... but the reality is THEY JUST DON'T GET. I'm fortunate in that my PALS and I can talk pretty frankly. We work hard to spend as much time as possible laughing at life (from the recommendation, "Laugh until Life makes sense")... but we also have those moments wherein we share tears. We'll strive to be courageous and strong, but we're also not shy about keeping it real. We both know that time is slipping away and that one day, sooner than either of us would prefer, "us" will undergo an immense change. So, in the meantime, we're determined to love and share and ride this train together. If she's having a rough time, I try to cheer her up. And when I'm having a moment, she's there to help me stand again. And when we're both feeling down at the same time... we hug, let the tears stream down our faces and close our eyes to it all. And then an amazing thing happens. Because we're still sharing things together, love triumphs... courage returns... and we find something to smile for, laugh at/about, and spirits begin to rise anew. And we start again. And because there are so many wonderful and beautiful people here, I know I'm never alone. And every day each of you encourage me and grant the knowledge that I can do this. I'm so glad to have the wonderful wife that I do... but I'm also grateful for the extended family that greets me every day within these forum walls. And sometimes, Nancy... the greatest strength comes from just being able to let down the walls and to share a tear or two; with your PALS or with us. Because we do GET IT...

Jim
 
oh Nancy, hugs to you girl.

Do let your husband comfort you, it will actually give him a gift. PALS often feel so useless as their bodies fail, so being able to hold and comfort you will show him that he still has much to give. You don't have to carry your burden silently all the time.

Sure, most of the time as CALS we want to be in control and be the strong one, but don't forget to still be human with your own husband xxx

It is the unimaginable that we have to somehow accept. This is as big as it gets, don't ever feel like you are just being sensitive or a complainer or whatever. We DO understand, and your rants are totally real and as heart wrenching as they feel.

Somehow, by helping each other, we get through each day.
 
Think of it this way. If before ALS you would have cried in front of him when you felt those emotions, why would you not cry now. It lets him know that despite all the things he can no longer do, you still need him. Every body needs to feel needed.
 
Nancy, I too had the DPS dream shattered at the same clinic. It made it much more real. I am like you, I try not to let my PALS see me cry ever but sometimes there is just no helping it. Let him hold you while he can. He needs to be needed just as much as you need him.
Like Jim said you just need to make the decision to ride this train together. I no longer shy away from the fact that he is dying, I just feel like its my job to make his quality of life the absolute best it can be.
Just know that here you can rant, ramble and rave!
Hugs
~Kaye
 
Dear Nancy: Who hasn't been there? If you have really held all that in for eight months, you were long overdue. There is always an undercurrent of grief that runs through our lives. If we're lucky, we can also find the parallel stream, which runs right beside it, of joy and gratitude.

My way of coping is to focus on my breathing, and on the present. If I can stay in the moment — I have this day with Jamie. We can watch this sunrise or sunset together, we can laugh at this television program, we can Skype with the kids right now — then I usually can keep the overwhelming feelings of grief and loss at bay. Even the challenges — if I can successfully get him moved from the chair to the bed right now, if I can give him a warm comforting shower so he feels clean and cared for — are easier if I focus on every aspect of the task. While I don't think my PALS enjoys seeing me cry, he also acknowledges it as an expression of my deep love for him, which is a companion to the equally deep grief. In less than six months, he has gone from walking with a limp to being completely WC dependent. He can breath and swallow so far, but I have to feed him. The aggressive pace of these disease has frightened us both. My husband is adamant that he does not want a peg or a vent. I will support him, however much I selfishly want him around for as long as possible. It's hard to watch our loved ones die, but there is no getting around that they ARE dying. In the mean time, we are trying to "live dyingly" but being present to each other. By savoring all the moments we have together. By finding the little gifts that this devastating disease offers up. I will take the difficult days, because it means he's still here, we're still together.

You didn't ask for advice, but... I would offer up that crying is not bad. Letting him comfort you is a gift. You are affected by this disease too. Very much so. Every tear tells a story and initiates a release. Crying is OK. Crying in front in front of your PALS is fine. Please don't be hard on yourself, and know that there are many people out here holding you with support and love.
 
AZmujer, your note is so beautifully written. As I reread it, am finding joy and gratitude in my Joe's death. He never had to endure what he considered "where the line got drawn!" So although my heart is heavy, the tears still come way too easily, and I still have moments of anger that he left me before I WAS READY, I am joyful that he is free, no longer suffering, and he was grateful for the life and family we shared. Those are good reasons for gratitude, and good reasons to smile. I believe he knows we are okay and that he can now enjoy the rewards of a life well lived now. ( especially loved your phrase that "every tear tells a story!" Guess I've told a lot of "stories" lately!). Thanks for joining the forum.
 
Dear Nancy, and other CALS too!
It has been a wonderful bittersweet thing to have some friends tear up or breakdown in front of me. With all the changes I've had to adapt to it's been a real hit to my self-esteem. Who am I if not Aaron-the-can-do-guy, the helper, Mr. Fit, Mr. Handyman, etc,? A few frriends and family have evaporated for reasons I can only foolishly speculate on. Maybe, as a dear cousin shared, they don.t trust themselves not to fall apart and dont know what to say or how to be. To have a friend call or visit and complain about their blister or work or a relationship and definitely for me, to fall apart in a hot mess offers me a glimmer of who I used to be to them... an equal. I asure my peeps that I would rather not feel patronised by being "protected" from their reality of their own grieving and struggle whether it is about me or their own stuff. I remain a whole person in spite of all the changes. I hope to be treated as I always was; ribbed, challenged, respected, chastised, blah blah. Tears don't last forever and usually a good chortle toward the end gives me a release and I hope it does for others.
Forge ahead. Thank you for sharing your experience and feelings about it. Be gentle to yourself about it all. Your best is just that; the best at that moment.
The Four Agreements comes to mind. A cliff note read is enough and food for thought.
 
Wondering Runner, you have said it so well for our PALS. The friends who harassed my hubby to the end, teasing him, joking with him, but always being there are the ones we both held dearest. They made him feel normal in this abnormal journey and will forever be the "angels" in our lives!
 
When Krissy cried, I was supportive and held her until it passed. Conversely, however...

I wasn't always supportive. For most of my life--without antidepressants--I would get really upset if a loved one cried. I would feel as though I failed to keep them happy. It bothered me personally and made me feel like a failure when they cried. I would get angry with myself and thus I couldn't be understanding. I would get angry. Of course, now that I'm much older, I'm a little wiser.

And now that my brain has better serotonin support (from antidepressants) I can be supportive of others.

This post is just a caution; not all people can handle it when a loved one cries.
 
Status
Not open for further replies.
Back
Top