Old 12-29-2014, 01:40 AM #16 (permalink)
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Default Re: New and unsure of what to do next?

Hi, Megan,
My husband was born with a genetic disorder and so our son saw him in the hospital many times, decades before we faced ALS.

Your kids will be guided by your approach, so my best first advice is to model however you would have wanted your mom to respond if the same thing had happened w/ your dad.

Whatever you do for them and your husband, whether tackling a problem or enjoying life's simple pleasures and beauty, will help you as well. There are no perfect caregivers, any more than there are perfect husbands or wives. It is indeed arbitrary, who is healthy and who is sick and who dies when. You don't have to accept or find any rationale for what happened at all, but you can live your best lives regardless.

Best,
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Old 12-29-2014, 03:14 AM #17 (permalink)
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Default Re: New and unsure of what to do next?

Hi Megan. Welcome to the forum. While it is sad that you have to be here, I am so very glad you have found it. It has been a lifesaver for me. You said "You all sound like you have it all totally together". Believe me, moments like those are momentary. As you have probably discovered already, this is a rollercoaster journey. It has been nearly two years since my husband was diagnosed and I still don't have it all totally together. Just as I feel that I do, something changes and I have to adapt all over again. On a positive note, adapting has become easier for me. Each step is no longer the huge hurdle it seemed when we started out on this journey. With patience, love and the knowledge and support gained on this forum I am still taking it one day at a time, while doing planning on the side for practical issues that may or may not arise. I have found that by educating myself on the various stages I have taken the edge off the worry about the future. I grieved deeply for at least eight or nine months after the diagnosis. It was only after that that I found the courage and energy to move forward. So be gentle on yourself, it is still early days for you. I still get sudden feelings of grief from time to time but the despair I felt early on has dissipated. We have two teenage daughters that have forced me to stay focused on living and finding joy in life despite the heartache. Please know that you are not alone. We are all for you here on the forum, to listen, to discuss, to understand and to uplift. Unfortunately I am in a different time zone (South Africa) so there is always a delay in my replies, but I hope you keep us updated on your progress so we can help ease your pain. Thinking of you and your family and sending you loads of peaceful energy.
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Old 12-29-2014, 04:10 AM #18 (permalink)
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Default Re: New and unsure of what to do next?

Megan, let me assure you I felt like I was just bumbling along the whole time ...
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Old 12-29-2014, 08:53 AM #19 (permalink)
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Default Re: New and unsure of what to do next?

Hi Megan - I too am so very sorry that you had to find your way here but at the same time, you have come across many MANY people who will give you their love, comfort and support, me included. My hubby was fine in June this year, and started like what we thought was a simple pinched nerve in his left calf; now he's in a wheel chair. I'm still I shock - I feel like it's a nightmare that I will wake out of and everything will be right again. DAMN ALS. Well, that said, I wish you and your sweet hubby all the best, hope, love, everything precious. Hugs from Heather xoxoxo
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Old 12-29-2014, 10:50 AM #20 (permalink)
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Default Re: New and unsure of what to do next?

Hi Megan, let me add my welcome to all the others. I completely understand your hesitancy to dip your foot into this pool--I certainly felt that way at first. I also left and returned several times, because early on reading often overwhelmed me. If that happens to you, take a break, but know we'll be here when you are ready to return.

I've never faced anything like this in my life. I sometimes think that I've had a relatively charmed life and this is charma catching up with me. Now I have a husband with ALS, a mother with Parkinson's, and a father with Alzhiemers. Thank God my kids are grown and doing well and that I have other people caring for mom and dad. Anger, grief, disbelief, acceptance, denial--they all continue to wash over me like waves. Sometimes the storm leaves one emotion around for awhile and sometimes they alternate like some kind of wicked twister that just won't let me go. I cried every day for the first nine months--sometimes for only a few seconds and sometimes great heaving sobs that sucked the air out of me and left me gasping. Recently the emotions come less frequently, but are also less controllable, so I've finally taken the great advice given here and started antidepressants. It does help, when you can, to adope the ITWIS (it is what it is) philosophy, since NOTHING will change the future. All you can control is how you respond to it. And, as others have said, get educated and try to stay ahead of this monster. Get equipment in place before you need it and learn to accept and even ask for help.

So, come here and share your raw emotions--this is the safest place to do that, since we DO GET IT. Then, when you need advice, get that here. Lurk if you'd like or participate. You are a member of a very close and special family, and we are here for you.
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Old 12-29-2014, 12:31 PM #21 (permalink)
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Default Re: New and unsure of what to do next?

Hello everyone,
It's so weird to read all your responses and know that they are not filled with pity for me or some faked sense of understanding. I think that's been one of the hardest things about sorting this all out in my head. I'm not sure about any of you, but for some reason it irks me when people cock their heads and say " oh, I'm just so sorry for you and your husband" I know they are just being polite and trying to comfort me, but I just want to stick my fingers in my ears like a child a scream!

I think @Nuts was able to write out pretty close to how I feel. I guess what I'm trying to say is....thank you all for TRUE understanding.
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Old 12-29-2014, 01:04 PM #22 (permalink)
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Default Re: New and unsure of what to do next?

Hi Megan,
I can relate to everything you are saying. My wife was diagnosed in Dec 2011 at 41. We have 3 daughters. She was in denial most of the time, I think she convinced herself that if she kept saying it wasn't true, then maybe it wouldn't be true. We tried all sorts of things....supplements, acupuncture, exercise, juicing, etc.... She just kept getting weaker. This stupid disease is relentless.
I have so far avoided the local support groups as well. Dealing with my anger and sadness in a group setting just never appealed to me. I tried a couple different therapists, but they honesetly didn't help either. I just joined this forum a few weeks ago and it's been a good place to vent. If nothing else, typing out your feelings is somewhat therapeutic.
My wife is sadly near the end of her journey. She chose to be on a ventilator, which she has been on for over a year now, but her condition now is such that she's no longer able to communicate at all (she's "locked in"). So we (the family) have a tough decision in front of us.
I feel so sad for you and for everyone here. There's no other way to say it, but this disease just flat out SUCKS. It's robbed me of my best friend and my daughters of the best mother they could ever ask for.
Not trying to make this about me, just want you to know that you are not alone in this. You have every right to be angry, sad, etc.
I totally relate to your comment about how you feel when people say to you "I'm so sorry for you and your family".....You're right, they are just trying to be nice, but sometimes you just don't want to hear that. I really hate it when people say "hang in there". Like we have a choice.
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Old 12-29-2014, 01:39 PM #23 (permalink)
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Default Re: New and unsure of what to do next?

WMS10--another one I HATE is "you and your husband are so brave." Again, like we have a choice.
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Old 12-29-2014, 01:43 PM #24 (permalink)
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Default Re: New and unsure of what to do next?

-@wsm10 ,
Yes, I completely agree. The other one I hate to hear is "well, you look great Megan! You're handling it far better than I would if I were in your shoes" I really don't understand what they mean when they are saying that to me? And then I reply like an idiot..."oh, thank you" when I really want to flip them off!

Sorry everyone, but I was always a bit of a pessimist and now with the turn of events in my life it's kicked into overdrive.
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Old 12-29-2014, 01:44 PM #25 (permalink)
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Default Re: New and unsure of what to do next?

>but my therapist thinks joining this forum will be helpful.

he/she is right

>We all may sound positive and uplifting, but that doesn't mean we are not also totally pissed at having this devastating disease. I feel cheated, betrayed by my body and angry of the turmoil it is causing all those around me. But, IIWII (it is what it is), and the choice is to sit around bitter and angry and lose any precious good moments that can be had with those I love, or to find some way to find something, anything to feel grateful and joyful about. That is hardest to do in the beginning.

Ditto that!


>Do you have any pets? We are all big pet lovers on here especially of dogs.

dogs? hah!
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Old 12-29-2014, 01:53 PM #26 (permalink)
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Default Re: New and unsure of what to do next?

Megan if you ever get a chance to dredge back through old threads you will find we all feel the same and hate the stupid things people say to cover their own inability to cope.

I would hate the same people saying - oh how is Chris doing? I would shrug and say, he's worse I'm afraid, it is a progressive and terminal illness. Oh yes I know, but I wanted to ask ...

of course they wanted to ask but didn't want the reply!

I developed a totally blank look I would give people who would tell me how amazing I was or how well I was doing ...

The very worst were the ones who would come over and say - but Chris looks pretty good really! Yep, after several hours of personal care attended to, and him sitting in his recliner, he did scrub up ok I spose.

Hey Max, way to go I'll ditto that!
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Old 12-29-2014, 01:53 PM #27 (permalink)
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Default Re: New and unsure of what to do next?

I can't typee so well so I keep a forum msgs txt file with some thoughts. here are a few:

rules:
------

#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax

ALS is about living, not dying!

------

------

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

------

If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

------

fwiw,

IIWII ("It Is What It Is!") ...



Max - Monday, December 29, 2014 12:52:59 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Old 12-29-2014, 02:06 PM #28 (permalink)
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Default Re: New and unsure of what to do next?

My question is this? What should a person say in this situation? If I say nothing to someone who has a illness or ALS I feel it comes off that I just plain don't give a damn. I know if feel hurt if I run into friends of the family and they don't ask me how my dad is. Then I feel that nobody cares. The other day I went Christmas shopping and a lady at a local shop said "I can believe your dad is still alive!" My eyes about popped out of my head. I also was afraid to say Merry Christmas to alot of the members on here. I was afraid they'd want to tell him to f -off after all the heartache of losing their loved one's. Then when someone posts on here about a memorial. I post I'm sorry and it seems like I'm writing nothing that is going to help that person or family. It's just so damn frustrating. So, please don't be insulted at what stupid things that people say. We feel like reaching out and helping but sometimes just honestly don't know how or truly don't understand what your going through. Kim
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Old 12-29-2014, 02:09 PM #29 (permalink)
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Default Re: New and unsure of what to do next?

>It's just so damn frustrating. So, please don't be insulted at what stupid things that people say. We feel like reaching out and helping but sometimes just honestly don't know how or truly don't understand what your going through. Kim



Ditto that!
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Old 12-29-2014, 02:21 PM #30 (permalink)
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Default Re: New and unsure of what to do next?

Kim, I was just thinking the same thing--what could people say that we wouldn't react negatively (even if internally) to? I don't know. Maybe that question deserves its own thread where we could work on it. I honestly believe most people mean well but are stumped--as am I. "I've been thinking a lot about you guys lately" seems to work for me--I appreciate the thought and there's nothing obviously (to me) stupid about the statement.
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