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Jamie

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Dec 23, 2008
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Loved one DX
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UT
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Salt Lake City
Hello all! I have perused a few of the threads over the past few days and decided I should make myself known...I imagine I'll be visiting the forum often.

My mother was just diagnosed with ALS 1 week ago, she is 51 and we suspect she has been exhibiting symptoms for about 1.5 to 2 years. Over the past year doctors have been at a loss for why she's lost her ability to swallow and talk...she finally got into an excellent neuro who figured it out pretty quickly. My best friends step-mother was diagnosed with ALS 6 months ago and has progressed very quickly so I've personally seen the many devastations the family has faced.

Since the diagnosis I have been cycling between disbelief and depression (mostly crying). My daughter (3) can't figure out what is wrong with "mommy" and I'm not sure my husband really knows how to comfort me. Oddly enough my 7 year old son seems to be the one who can lift my spirits.

I've been up all night tonight and I think the wave of realization has just hit me. I'm bawling at 6 in the morning and I just can't seem to stop. I know I have got to keep myself together for my kids, for my dad, for my brothers, and especially for my mom.

Please, someone tell me that even though this is the very hardest thing I will ever face in my life that I can make it through this... I know many people do...but I really need to hear that right now.

-Jamie
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
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Los Angeles
Jamie ... I can tell you that you will make it through this, and the situation right now is the worst it will be. The shock of this diagnosis is shattering ... and your mom is so young. Please don't feel that you have to keep yourself together 24/7 for your family. I'm sure if you lean on them, they will come through for you and give you the comfort and support you need right now.

Being a caretaker is harder than being a patient. Be there for your mom and don't worry about being strong. You all need to grieve ...

There are many caretakers on this forum who will help carry you through this.

Blessings to you and your mom and your family. I am so sorry for her diagnosis.
 

jennyhoff

Member
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Dec 2, 2008
Messages
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PALS
Diagnosis
05/2006
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US
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Washington
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Spokane
Acceptance

I am so sorry Jamie. I was 47 when diagnosed. I remember feeling so responsible for the pain in those around me that I put on the brave face. It didn't take long to figure out that did not work. I found that the only way to get it out was to let it out. And that started the process to acceptance.

It's ok to feel how you feel. I understand the concern for your children, but they too will learn that crying is sometimes a coping device.

I remember being angry that my husband wasn't dealing with things the same as me, or at the same pace, or as I thought he should. And I learned that there is no right or wrong way to cope or to grieve. It is truly an individual experience. And has surprised everyone around him-including me-by stepping up and becoming more than I would have ever known.

I remember crying every morning in the shower for about two weeks after diagnosed. My husband made reference to my "hormones" and female issues causing the tears and when would it be over?! I wanted to sock him in the nose! Instead I kindly explained that I was crying because my life had been turned upside down, NOT because of hormones! And the crying did finally stop.

Yes-the pain and fear WILL become tolerable. It WILL become easier. And don't be surprised if out of all of this darkness beautiful things will grow. And you will find the smallest things to appreciate in others and in the most unlikely of places.
We have built a world that teaches us that the worst that can happen to us is death. I believe that the worst would be dying without this opportunity to live with my senses peaked and my eyes wide opened.

Feel what you need to feel-look for the treasures, and love your mom with all you have, have no regrets, and leave no words unsaid. She will always know you love her.
I wish you the best.

jenny
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
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PALS
Diagnosis
06/2008
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US
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any
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any
Jamie,
My heart goes out to you my dear. I was also 47 when I was diagnosed, like jenny. There is no "right way" to feel, and like Beth said, this first 2-3 weeks will be the worst. This forum is a wonderful place for you to find support, not only for yourself, but also for your mom, your children, your husband...the list goes on and on.

My husband just said yesterday that he was going to "have to live forever since our youngest son is only 8". I could have knocked him in the head right then. He also made reference to "now that I have ALS ( referring to me ), someone has to be here for the boys." It has been a very fast 7 months since my diagnosed, my speech is the most affected, but I am still active in my boys' sporting events, and still working 2 or 3 days a week as a nurse.

I've recently read something that talked about the journey of a thousand miles begins with one small step..or something like that. This is a huge adjustment period for all for you, but you will find a "new" normal.

Lean on us all you need to,
-brenda
 

Jamie

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Dec 23, 2008
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Loved one DX
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US
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UT
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Salt Lake City
Thank you...

Thank you all for your reassurance. While I know things are only going to get worse for mom from here on out I know that I can choose to focus on the good things. My dad made a good point when he told all of us we can go through this process and be very angry and sad or we can allow our emotions to take the ride with us -the happiness, the sadness, the laughter, and the crying. I'm going to avoid being angry and bitter the best I can :)

Thanks again... I'm sure you'll be seeing me around again soon.

Jamie
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
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Learn about ALS
Country
US
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New England
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Anytown
Welcome to the forum, Jamie. I love your Dad's advice! He sounds like a wise gentleman. One thing that some CALS have found helpful is this website.

And we will be with you at every step of the way. Write often and let us know how things are going! Cindy
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
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PALS
Diagnosis
10/2003
Country
CA
State
On
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NW of Toronto
Hey Cindy, that's the second bad link you've done today. Too much egg nog?

AL.
 

Flowerpot

Active member
Joined
Aug 28, 2008
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80
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CALS
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UK
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Tyne and Wear
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Newcastle upon Tyne
Jamie

Hi and welcome - it is quite normal to feel the way you do and I reckon you should just let it all out - I have been doing this on various occasions ( many unannounced )and my boys know now why I get upset.

Having said that , it is not easy giving 100% to the person with ALS/MND and sometimes you need some time away for yourself , even if it is just for a coffee or whatever, or a good rant to your friend who takes it on board with a pinch of salt.

better out than in - my Mum says , although I feel the guilt as I have not been in to see her today !

AL - you are being very naughty !

Kind regards Jamie

Flowerpot
 

Al

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Joined
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Messages
7,960
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PALS
Diagnosis
10/2003
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CA
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On
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NW of Toronto
Who? Me? Never.!

AL.
 

Moira-Anne

New member
Joined
Dec 28, 2008
Messages
1
Reason
PALS
Diagnosis
12/2005
Country
NZ
State
Wellington
City
Upper Hutt
Hi Jamie, My heart goes out to you. Mt mother was diagnosed with this bastard disease after suffering for 13 long years and been told that she was seeking attention for all this time. She had the SOD1 gene which I unfortunately inherited. I have a blog about my travels with this disease. If you wish to read it please contact me and I will forward the link onto you. It is harder for the family to watch a loved one suffer than it is for the patient. My thoughts are with you.
 

OhioArt2

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Joined
Aug 17, 2007
Messages
16
Reason
CALS
Country
US
State
OH
City
Toledo
Hi Jaime

I went through the same thing when my mom was diaagnosed. My husband and I became her caretakers. It wasn't easy - but it was an incredible journey for us all.

I honestly do not believe my mother and I would have had such a close bond had she not been ill. I know that sounds horrid... but the relationship that grew was such a blessing for all three of us.

I became her voice and her advocate.
You will be amazed at your mom's srength - and at your own.
 

Jamie

New member
Joined
Dec 23, 2008
Messages
8
Reason
Loved one DX
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US
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UT
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Salt Lake City
Thanks Cindy

Thank you Cindy. My dad is quite the "wise one" and not always in a "smart" way if you know what I mean ;-)

He's mom's primary caretaker and I know it must be so hard for him to be taking care of his sweetheart and watch her deteriorate. But he's got the heart and the head for it. Without his wisdom we would feel lost. I've inherited his smart alek ways but not his calm way of displaying emotions.

Thank you again for the welcome!

Jamie
 
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Jamie

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Joined
Dec 23, 2008
Messages
8
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Loved one DX
Country
US
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UT
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Salt Lake City
Flowerpot...

Thank you for the kind advice. I do need to get out and reconnect with friends and family. I've been in college for nearly 5 years (while working fulltime, a mother, and a wife)...so I was just gearing up for a nice long break -only to find out the bad news about mom. I keep teasing her that she has perfect timing. I'm grateful she has had the best sense of humor about everything as that is often how I deal with my stress.

I finish school in February -but I do it online so I won't miss out with any time I have left :)

I appreciate the welcoming words and will definitely be around for more advice and to offer what I can for others.

Jamie
 

Jamie

New member
Joined
Dec 23, 2008
Messages
8
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Loved one DX
Country
US
State
UT
City
Salt Lake City
Hi Jamie, My heart goes out to you. Mt mother was diagnosed with this bastard disease after suffering for 13 long years and been told that she was seeking attention for all this time. She had the SOD1 gene which I unfortunately inherited. I have a blog about my travels with this disease. If you wish to read it please contact me and I will forward the link onto you. It is harder for the family to watch a loved one suffer than it is for the patient. My thoughts are with you.

Moira -how awful that your mother had to deal with the disease and people not believing her. My mother has been dealing with other diseases her entire life (she wasn't expected to live past 12 due to Scleroderma) and subsequently many of her doctors from the good old days felt she was just seeking attention when she had any issues come up. Definitely not the injustice your mother experienced but I can relate a bit. We haven't seen a history of ALS in the family and they don't suspect the SOD1 gene in her case. Is that something they typically test for? I don't mean to be naive...I'm still doing all the research I can.

Kind regards -Jamie
 
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