In Despair...

[njk0407]

We were able to get in sooner than July 5th...It was confirmed by Dr. Bedlack that my 36 year old husband, father of our 2 children (ages 4 & 13 months) has ALS. Happy Belated Birthday to me and Anniversary to Us (6 years this Sunday). Sorry to be so sarcastic, but I'm so ANGRY!!!!! I feel cheated, this should NOT be happening. When I look at our children I literally want to LOSE it!!!! This is REAL.

My husband keeps telling me that it will be OK, but I know it won't be. OK to me means that this isn't true and it's just a bad dream, but this is not the case NOTHING will be OK ever again, not without him. My husband is handling this better than me. I didn't go to work today, I CAN'T! I don't want to be there. I don't want to be here at home.

I spent hours just driving around our little town, sitting in parking lots trying to figure out where to go. We have no family here and I really don't have any friends here unfortunately. Nobody can make this better anyways. The friends I talk to on the phone cannot even begin to understand the level of despair and hopelessness I feel....they all get to KEEP their husbands Anything is better than this, KNOWING what's going to happen to him, what he's going to go through, the SUFFERING!

How am I suppose to watch this happen to him??? Our children??? I can't even begin to think about what our son is going to think. The WORST part is the knowing! My husband is being so brave and so strong, but I am quite certain he must be TERRIFIED! He told me last night that he's nervous about not being able to breathe or eat...I literally wanted to break down screaming. I cannot imagine what he must be feeling. I am trying to put on a brave face for him, but I honestly feel like I would rather a tornado rip through our house in the middle of the night than this, anything is better than this.

I am already mourning the loss of him and he is still here. This makes no sense. He is so young, our kids are young, were just starting out. We have plans.....we have plans. I don't even know if this is the right forum for me to be saying all this. I can't say this stuff to him. One minute I think I am ok and the next minute I'm in a pit of despair. I've already gotten on medication.

How hilarious....I'm seeing a psychiatrist, my husband is diagnosed with a terminal illness and to think a month ago I was complaining about disliking my job or being tired or having to do the laundry or whatever other stupid insignificant thing. I would take it all back, all of it, I'll do anything! He's eligible for clinical trials so I'll be asking for advice on those. Thanks for listening.

-Nikki

 

[GregK]

Yes, the initial shock is terrible for both of you.
You will come to accept it. This horrible feeling will fade

There are many valid trials going on, and likely more to come, thanks in large part to the Ice Bucket Challange.

Be be aware and wary of those waiting to scam you. This includes, but is not limited to:
- chelation therapy
- Lyme disease treatment
- stem cell clinics (NOT the trials)

At this time the ONLY ALS treatment is Riluzole.

-----

Is your hubby a vet?

 

[Narrowminded]

Nikki - I'm so sorry you have had to join us. As Greg has said, it never goes away but you do learn to "accept" it and move forward. All I can said it try not to look to far into the future at any one time. Stay in today. Live in the moment. Get annoyed at the laundry - it will still annoy you. Those things we all complain about don't go away. Sure this is more serious and they seem trivial, but it doesn't mean they bug us any less. Sometimes they will bug you more. The reason I say live for today, is if you live in the future you won't enjoy the time you have now. Everyone's timeline is different. Your husband could slow, could stall out, could hit plateaus. My DH's progress was slow. He's on a vent and has been for almost 6 years. While he can't move, and is bed bound he was and still is determined to fight. He watched his son grad college and his daughter learn to drive, grad HS and now college all on his vent. He can still talk to them, albeit now through a Tobii. He is still a part of his kids lives. Your husband can do the same. I'm sending huge hugs. I remember those first days so very well. Hang in there and vent away here. WE all understand.

 

[njk0407]

Greg,
Thank you for the Information. No my husband is not a vet. He currently is on Riluzole. This recent visit was our "2nd Opinion", but I was holding out for a sliver of hope that the first dr. was wrong

Narrowminded,
Thank you for your response and advice. It's so hard, but I do understand about living in the moment as I don't want these good days to be robbed from us too. Thank you for the insight regarding your husband. My husband has told me that he doesn't want a feeding tube or a vent, this may change in the future though. Too scary to think about now I think. I am so glad that your husband has been able to watch your children achieve major milestones That is awesome and does give me a different perspective and hope. Thank you for this. Thank you for the hugs too, you are very kind.

 

[soonerwife]

I am so sorry you are going through this! All you can do is take one day at a time, one step at a time.

 

[njk0407]

Soonerwife,
Thank you. I am sorry you are going through this too.

 

[GregK]

Your husband lumps feeding tube and vent together, saying he wants neither.
This isn't uncommon.

I would suggest that the vent is an order of magnitude more 'serious' than a feeding tube, and that they should not be lumped together.

I see in one of your earlier posts that his voice is going. That being the case, he will start having problems swallowing.
This will make eating, drinking and taking medications problematic.

I got a tube early on and have zero regrets.

I suggest that people not consider the feeding tube as a "life extending measure" but as "life enhancing."

He can always decide to not 'eat' with the tube, but it will still be invaluable for hydration and medicine.

Good luck, and look here for support as often as you need.

 

[scaredwifetx]

I am so sorry you are here. I understand the anger, despair and not wanting to be at home or at work. I find myself driving around just crying and lost in thought. This disease will make you stronger and somehow you will see the other side. Life will certainly never be the same and it will be very hard but you have two beautiful children. My grandchildren keep me centered and I try to get away with them even if it is for a few hours. They are HOPE and the Future. Take one day at a time as anymore is just to horrible.

My thoughts are with you and suddenly my troubles feel small in comparsion. Also, you are never alone. This forum will be a guiding light for support and knowledge. We all feel the pain right along with you and we understand!

 

[JennyC]

Sorry you are having to be with us, it wasn't very long ago that I was where you are as far as emotions, in fact it was only about 6 weeks ago but it feels so much longer. The emotions do even out . When my mom was first diagnosed I thought how I'd never get irritated by her again, how all of the stupid little things didn't matter. Six weeks later she still does the same crap that has always worn on my nerves and yes I do get irritated lol. You will mourn him like he is gone, heck I even picture her funeral and her eulogy...I think thats our minds way of helping to prepare us. But everyone is right when they say to try to stay in the moment, stay in the here and now because if you don't you will miss it and regret it. Its okay to be angry and sad and devastated. Please come here and vent as much as you need to.

 

[Nuts]

Nikki, all of your feelings are valid. The only thing that's helped me is acceptance. I can't think about what we've lost, what we will never have, or even what we used to have. Those thoughts lead to madness. I do thank God that this happen to us later in life--that our children are grown and that the grandchildren have started. You have so much more to accept than I...

Life is changed and will never be what it should have been, but there is still life to live--still memories to make. Ironically, I found that accepting our losses was the only way to relax and enjoy the life that we have left.

Hugs

Becky

 

[affected]

This early time after diagnosis is just so awful. You will level out a bit, even though it seems like that's not possible. You won't stop feeling the anger at being robbed of your dreams, but you won't feel so totally overwhelmed.

I read that as I type and think that sounds like such a bunch of total crap. But it's true, the shock you are in now is real and it just takes you over, but it does ease.

I can so identify with the feeling of being robbed. I finally met my soul mate in late 2009. He had lost his first wife to cancer when she was only 41. His attitude to grabbing life was incredible and I will never regret how we raced through to buying this property only 6 months later, then married exactly a year after moving in here.
He started symptoms within the second half of that first year.
By our first wedding anniversary he was becoming concerned and by our second wedding anniversary he was diagnosed with bulbar onset ALS.
Less than a year later he was gone.

RIPPED OFF.

But I did find acceptance, and I did give him the best care I could, and he had a peaceful death, and I'm learning to make a new shape to my life.

I hope that's not TMI, but I want you to know that your anger and despair are valid. The horror of it is real. But we will help you, and you will find a way through and learn to make the most of every day you do have, for yourself and the whole family.

You can be honest here, we will listen and we won't minimise anything you are going through. We also have a huge wealth of information on this site for all the practical and emotional needs you will encounter. If it hasn't already been written we will discuss it and it gets written for others to come back to. If it's already been written, you can read it, then we will discuss it all again.

hugs to you, try not to let the enormity overwhelm you every moment and be kind to yourself xx

 

[Narrowminded]

Nikki - Greg brought up a very good point about a feeding tube. When DH had his trach placed for his vent, we had them do a feeding tube as well. He wasn't totally happy I had suggested that, but reminded him it would be one less surgery. Right from the get go, he was able to get some supplements to what he could eat and helped with his meds and was immediately happy he had it done. Since your DH was just dx, that may be a little ways off yet, and no need to think about it today. A vent is a very personal choice. It has it's good sides and its bad. Each and everyone has to decide for themselves what is right for them. No need to discuss that yet either, unless he is already having trouble breathing. For now - just breathe. Relax as best you can, let it all sink and come to that place of acceptance. Then you can think about what interventions you might want in the future. Now is not the time to make that decision. Sending more hugs.

 

[Lixen]

I'm sorry you're having to deal with this. It truly isn't fair and although you never get used to the feeling of falling off the side of the earth, it becomes less intense over time. There is no righting this wrong, only mitigating the damage and learning not to look too far into the future.

Please, please reconsider the PEG tube, and if he decides he's okay with it, get it now. He doesn't have to use it now but the sooner he has the surgery the better, and for too many reasons to count. I have many regrets, the PEG isn't one of them. I also agree this isn't a matter of 'life extending' treatment, it's a quality of life issue. Two totally different scenarios. I know this doesn't help you with your emotional pain but I can't stress enough the need to reconsider the PEG. I feel so strongly about it I really can't be objective or even supportive of dissenting viewpoints on this issue.

How is his family coping? Are they still in denial or have they been able to come to terms with the progressive nature of ALS?

 

[affected]

I agree the peg is one of the important issues I would urge PALS to consider, however I've also known many PALS with no peg who passed very peacefully.

It is also the PALS choice, and as CALS we are there to support what they want. I felt my place was to research and have all the information available when my PALS may want it, or more often alert health professionals so they could start conversations to help him make choices.

I want to make this clear as I don't want Nikki to go into further despair because it sounds like something even more terrible will happen if her PALS does not accept a peg.

 

[Lixen]

Ultimately, it's a personal decision and there's no right or wrong way to navigate ALS, nor is it my intent to add to her despair. I consider an early PEG one of the few choices available where the benefits far outweigh the risks. I admitted my bias to emphasize my lack of objectivity, not my inability to support those who choose a different route.

Nikki, when you're ready, this is a recent thread that discusses the PEG. It is easily concealed under clothing and he can use it as often or as infrequently as he likes. It's remains 100% optional, 100% of the time. The idea is to keep his weight up, conserve energy and to take the stress out of eating/chewing/swallowing once it starts to become problematic.

https://www.alsforums.com/forum/current-caregivers-cals/32924-hello-new-cals-board.html

In the meantime, just know you're not alone. Words seem so inadequate.