Old 05-20-2013, 09:14 PM #1 (permalink)
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Default As a loved one, how do you stay strong?

I am new here and my husband who is only 30 years old was just diagnosed with ALS a couple of weeks ago. We are going for a second opinion but I pretty much already know what they are going to say.
My question is for those that have loved ones with ALS. How do you show strength when all you want to do is cry? I have an 11 month old son and the thought of him not knowing his father is eating me up inside.. I apologize if I am in the wrong forum.
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Old 05-20-2013, 09:29 PM #2 (permalink)
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Default Re: As a loved one, how do you stay strong?

Hi Actingmama5. You are in the right place. I am very sorry to hear about your husband's diagnosis. I am 29 and my mom suffers from PLS, which is similar to ALS, except it doesn't cause muscle wasting and causes a very slow decline. My mom has had it for 11 years. My dad has cared for her at home the whole time. She is invalid and can't speak now. He would be the one to tell you how you stay strong while caring for a spouse. Others here will have excellent advice, but what I will tell you is don't go through this alone. Reach out to family and friends, and lean on them so your husband can lean on you. I know it can feel like you are alone in this journey (I know I did) but don't hold this in, and the people who care about you will be there for you. Don't be afraid to seek professional help either. My dad and I have both benefited from medication and a therapist. And of course, the people on this board have walked in your shoes, so let it all out here.

Mostly, the strength you need will come from within yourself. It may not seem like it now because this is so fresh for you, but you will find a strength you never knew you had. It will come because this is your husband and you love him, and we have a way of doing whatever it takes. This I do know from experience.

I'm sorry to say welcome to the boards, but everyone here knows what you're feeling and will be here to listen you vent, rant, cry, whatever you need to do. You WILL make it through this, one step at a time. My prayers are with you and your family.
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Old 05-20-2013, 10:17 PM #3 (permalink)
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Default Re: As a loved one, how do you stay strong?

You are right where you need to be and sorry to say welcome. This is a club no one wants to join. All I can say is you do what you have to do, there is no right or wrong way. You need to grieve, cry, and then get down to business.

Just like being a mom as you are finding out. Once the shock wears off, you will learn to live with the new normal. You will make good memories, take lots of pictures and videos. You will laugh again, for there are still good times to be had. Your son will know his father, you will make sure that he does.

We are here and we will listen, and try to answer questions, we will laugh and cry with you. I am wishing you strength and peace. {{{{HUGS}}}}.
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Old 05-20-2013, 11:09 PM #4 (permalink)
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Default Re: As a loved one, how do you stay strong?

I would suggest that you get help as soon as is necessary, don't wait until you are too tired or confused. This is a long and very difficult road you have just been catapulted on to, you will need every ounce of patience and love you have in you, and the better you are feeling the easier it will be to stay strong. Get as much rest, away time, and physical and mental help you can get. Good luck, you already have new friends here who will help you navigate this journey.
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Old 05-20-2013, 11:16 PM #5 (permalink)
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Default Re: As a loved one, how do you stay strong?

I am so sorry for your husband's diagnosis. he is very young and this will be so hard for you. It is rare for someone so young to be stricken with ALS, but it does happen. we have had other members here deal with this, and even have babies after their spouse was diagnosed. life is not over yet for the two of you, but it is ok to cry and grieve for the time you are losing. I promise you will do a lot of crying, but I also promise that it will get "better" too. this is very new for you so cut yourself some slack. you will learn to be strong--but it is ok to be sad right now.

now is the time to take a lot of pics of your husband and son together, and video too. he will appreciate it when he is older. have your husband make videos for your son for when he is older. maybe talk about what he wishes for his son in the future.

we are here for you, please hang in there.

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Old 05-21-2013, 06:22 PM #6 (permalink)
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Default Re: As a loved one, how do you stay strong?

So sad you had to join us on the journey nobody wants to be on. You will find the strength to face this because in all honesty you do not have a choice if you love your husband! My husband was diagnosed 2 years ago at the ripe old age of 50. It may sound "old" to you given your husband's young age....however, age is relative in this disease. I think all of us have experienced every emotion feasible, whether it be anger, guilt, sadness and tears, as well as the grieving process (not only for what is happening now but also what the future inevitably holds). Understand that it is completely normal. You will gain strength for yourself, your husband and your son in many different ways---whether it be through your faith, family, friends or simply this forum (which is pretty amazing). This is the place you come to ask questions, gain knowledge, vent and cry, and overall gather the emotional support you will need during the difficult walk in life. Have faith in yourself.....as I was told by another forum member(s) when I vented over one mundane issue or another.....time to put on and pull up your big girl panties. You are walking a new and difficult path, incredibly hard, but not without an incredible amount of happiness if you allow yourself same. Create beautiful memories for your husband, your precious son and yourself. Take care and God bless.

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Old 05-21-2013, 08:51 PM #7 (permalink)
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Default Re: As a loved one, how do you stay strong?

Thank you all so much for your kind words and helpful advice. I am glad that I have found this group because nobody understands how hard this is and most people I talked to have never even heard of ALS before. My prayers are with you all!
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Old 05-21-2013, 11:11 PM #8 (permalink)
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Default Re: As a loved one, how do you stay strong?

We are weak in the flesh. My wife died from ALS in Aug. 2013. After taking care of her for 2 yrs., I was at the point of breaking. To me, the only reason I made it was knowing Jesus says about death. It is the biggest enemy of man. We as humans are very fearful of it until we know the answer for it. Jesus tells us about it in the New Testament. This life is a brief wisp when compared to eternity. Study it for yourself and you will realize what a brief life we all have whether we die as a babe or continue to 100, what was the point if you miss eternity.
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Old 05-27-2013, 06:17 AM #9 (permalink)
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Default Re: As a loved one, how do you stay strong?

I'm 38, was diagnosed 5 months ago and am father to a 4 months old baby girl. We try to keep our minds occupied with the child, and I'm struggling to keep working as long as possible so that I could afford to have our unfinished home ready for the girl to grow in. One bite at a time is the only way to deal with it, and there are good moments every day.
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Old 05-27-2013, 10:04 AM #10 (permalink)
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Default Re: As a loved one, how do you stay strong?

As for me,I took care of my wife for two years before she died last year. There were time that I though I was going to lose it. I have an abiding faith in Jesus and I relied on that faith to pull me through. I could feel His presence with me at my weakest times. If not for Him I would have no hope at all. He is the only hope the world has and most people reject Him. They throw away the person that could help them the most and cling to the temporal which fails every time.
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Old 06-04-2013, 10:14 PM #11 (permalink)
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Default Re: As a loved one, how do you stay strong?

Prayers for your family. We are still in the diagnosis process with my dad and I woory about how we will do it on a daily basis. My mother can not physically do much once he is disabled, at 62 my mom offered to start mowing the yard because my dad couldn't move his hands this weekend but I don't see her making more than a few passes because she is so overweight.
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Old 06-05-2013, 10:38 AM #12 (permalink)
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Default Re: As a loved one, how do you stay strong?

I am so sorry to hear about your husband. My husband was also diagnosed with ALS in 2011 (symptoms started in 2009). He has been a trooper (better than me). It is a hard and difficult journey, but you will find the strength because you have no other choice. I've done my share of crying, being in denial, being angry, depressed, frustrated. But the bottom line is, I love him and neither one of us asked for this terrible disease. Contact your local ALS group, ask family members for help and take care of yourself. I'm new to this forum also, but these are good, caring and understanding people here. You will find the strength and the "new normal" for your family.

Good luck and my prayers are with you.
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Old 06-17-2013, 03:56 AM #13 (permalink)
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Default Re: As a loved one, how do you stay strong?

I'm sorry to see you have to join us, I'm still coming to grips with it myself.
The ideas about taking video now, making memories your son can share with you as he grows up is a great idea, especially if he has good speech at the moment.

How do you stay strong?
I really don't know, I'm not feeling very strong at all, but somehow I manage to seem that way much of the time, but I have sat and cried with my husband, and truly that is good for both of us. Don't be afraid to show him that you are devastated, let him comfort you as you cry, then pick yourself up and march along.
I battle every day though, and my PALS is starting to have some bad days where he becomes quite morbid and that is the hardest one for me as I try to stay as positive as I can.
People use many ways to draw strength and each of those is valid for that person, we all find strength in different ways, and a great thing about a place like this is that each CALS here can give you ideas of how they draw strength which I hope will, bit by bit, help you find the way through that works for you.
A place like this where you can actually talk honestly and be understood is one way of garnering the strength to go on each day

A lovely person here told me to 'lean hard, lean often', and I'd like to encourage you to do this too.
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Old 06-25-2013, 10:40 AM #14 (permalink)
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Default Re: As a loved one, how do you stay strong?

The first few months were the hardest for me emotionally.. Just the sheer devastation and shock. Then it started getting easier.. Your mind and heart need time to digests what's happening to your family. It doesn't get better but you will.. You will learn ways to help you cope. My husband was 31 when he was diagnosed 2 years ago. It seems unfair doesn't it? I'm glad you are here already, seeking support. Hugs to you and your sweet baby.
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