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Nuch

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Jul 23, 2010
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11
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Lost a loved one
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US
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MN
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Minneapolis
Hi there- My mother was just diagnosed with ALS this week. She recently relocated to my state to be closer and therefore has no support system here other than me. On top of that I'm a only child (single with no kids) and her family only consists one brother that lives in a different state. I'm trying to be strong for her and support her right now in this very difficult diagnosis but am struggling not breaking down myself. What is okay to let her see? I feel if I break down in front of her she doesn't have my strength to help her.
 
My husband has a very hard time if I break down in front of him. I get in the car, drive to the park nearby and do my crying there!
 
Nuch, My gut feeling is to go ahead and cry, and hold her at the same time. You don't lose strength by breaking down, you're showing the depth of your love with your grief. I imagine your mother knows anyway. And after unloading it, the strength will likely be apparent once again.

I don't cry easily or (until ALS hit) often. I didn't cry when I got the diagnosis, either--neither did my husband. I did cry, however, when I'd struggled with all my strength to climb the stairs as fast as possible, heaving for breath while the phone rang, which ended with my falling onto the floor. Phil ran upstairs as he'd heard me hit and then heard me begin to wail. He laid on top of me and sobbed. It was the kindest thing at that moment he could have done.

We rarely cry now, and usually it's more of a tearing up and quick return to normal. Does your mother ever cry? If so, try joining her. And then learn to laugh together at the crazy, bizarre things which also happen. We actually laugh far more now than ever before, and I consider it my job to make this as much fun for as long as possible. It takes a while to become accustomed to the new realities.

I do understand how very serious it is that you don't have anyone else to help you... and I wonder how you can get some help with this. Do you have any close friends who know what you're doing, who might bring meals, or offer to do errands for you? It really does "take a village" in order to not burn out with fatigue. If anyone offers to help or asks what they can do, have a prepared list of what would really be of use to you. Different folks are comfortable doing different roles.

Blessings,
Ann

p.s. Missy, men are from Mars. I understand what you're going through. If Phil were in my boots (smile), I'd be trying not to cry, knowing it would make him feel even more helpless. And, I would be a basket case, no doubt about it.
 
Let's see.. today's breakdown consisted of yelling at my 25 year old son because he hadn't caught up with the dishes fast enough to suit me, chucking a (luckily plastic) bottle of mustard across the kitchen, ensuing shouting match with Kevin followed by me stomping outside to my shiny new patio to have a good cry. Kev and his girlfriend followed me out, we talked and cleared the air and now things are better. Sometimes you just gotta open the floodgates and get it out .. yeah, it'll build up again, but at least for a while there will be a place for it to go.
 
wow i break down by myself but when my wife breaks down when seeing our granddaughter, planning daughters wedding etc. etc..i cant help it. put a skirt on me and my tears would fill a grand canyon.
 
Hi, My Favourite Martian here. Lying in bed the other night trying to get my arms up to get my bipap mask and I just couldn't do it. Laid in the bed bawling my eyes out for ten minutes until I couldn't cry anymore and then I tried again for the mask and did it this time.

I never cried when I got my diagnosis but have had a few sessions since and it feels better when you stop. It is useful to relieve pent up emotions and although I never cried pre ALS I sure do now. At the drop of a hat!
 
Barry, I find it helps to remember I can't cough... that thought snaps me out of most situations. Showing my "empathy", I now need help twisting up and clipping my hair. I could do it (barely) while lying down, but not at the sink, sitting up... which is when I need to. I've cavalierly said, "I'll just have my caregivers do (whatever) when that time comes." In real time it's a pain. When I cannot make it alone at night there's going to be some crying going on. And, like you, it does relieve pent up emotions, but the aftermath is rough. Crying hard is very exhausting. I do like the "My Favorite Martian" in your message. It makes quite a mental picture.

Nuch, it's looking like crying with your mom is generally thought not only ok, but even impossible to avoid.
 
It's OK! You're not superwoman! You are human! *

I'm very sorry about your mom and that you have none, other than yourself, to help with the care. Please hang in there and thank you for caring so much for your mom!
 
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so painful, reading posts like these. i do not believe in a god only that things are what they are!....which means i have no words that might comfort...........i wish i did and i had......god bless , johnny..
 
Thanks for the above posts. The hardest part is feeling like none of my friends can truly understand which leads to feeling very alone. They have all said they will be there for me for whatever I need and I know they mean it but knave a hard time asking for help. Am used to being the one to jump up to help someone else. I really think seeing these support groups will help throughout.
Best wishes to you all!
Linda
 
I'm sending you COURAGE to ASK for help! It is hard and may seem humiliating, but DO IT!

My husband is j u s t about to the point that he is ready to do so, maybe...

I really wish you luck in dealing with this.
 
Linda, I was the same way as you describe yourself, and honestly couldn't imagine allowing anyone to help. Our friends are in a house church which is small and close, and together for, I think, 17 years--although some friends go back a lot further than that time frame.

So, one man told me he would be making dinner every week, and what day did I want it delivered? Slowly you begin to realize that people who love you actually appreciate being helpful. Those who will not take no for an answer are wonderful and such a blessing. Oh, and the man who said he'd make dinner and bring it has now done so for about two years, and Linda--he learned to cook by cooking for us. I'm able to keep his offerings down to two night's worth of food, whereas it had creeped up to about six nights briefly. Your mother needs your help, and you need the help of your friends. One day it will be you doing the giving again. Meanwhile, it's amazing how often and how humbling it will be to be told that by receiving from them, you are actually giving the blessing. Your friends will begin to really understand as you allow them to help you, and incredibly, while it's very hard to be sick or to be the main caregiver, there is also something very deep and real found in the involvement.

Blessings.
Ann
 
I agree with Ann... one of the hardest and most important lessons we all learn on this journey is to allow others to be kind! It gets easier with practice.
 
Nuch,

I feel very much like you, how much do you show. My soon to be husband ( 4 more weeks) has been diagnosed with ALS and sometimes it is difficult to show him the tears. We have been together 3 years. We use to talk about what we will/would do when we retire as we both have worked all our lives and never really took time off. We are both 50. There are times when I just want to scream and yell and stomp my feet. It isn't fair! I know he cries at night, he will go into the other bedroom, lay in there and cry. He wants to be strong for me and I want to be strong for him.

Right now I think about the wedding and that takes a little off the mind, but after that I don't know. It will be day by day. His symptoms seem to be going faster than what I would have expected. His first symptom were in November last year, his right hand went numb, and now he has lost the use of his right hand and most of his left. His feet are starting to go out on him he stumbles often, and his breathing is getting difficult. He has asthma and says he has difficulting especially at night.

Perhaps after things settle down, after the wedding, things will hit a bit harder, I don't know.

I will keep you in my prayers, and do keep in touch through this forum it does help.

Debora
 
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