I can't bring myself to stop crying, please help me

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TammyB

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Dec 13, 2008
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8
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Loved one DX
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CA
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Ontario
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Maxville
My 2 year old calls my mother-his grandma, his best friend. My 1 year old daughter says "I miss Grandma" as her first words...she lives for these two babies and yesterday we found out she has ALS. Her leg started seizing up about 9 months ago and it has stopped working completely. She was a dancer, a ballet dancer. She ran around with them chasing butterflies and now she is going to die.

She is the only help we have with our two kids and we feel like our whole world just fell apart. My husband can't stop crying and I am at work trying to deal with customers between trips to cry in the bathroom.

I cannot fathom this vibrant 62 year old woman wont be around to see them graduate and get married. I am lost without her-I have 4 older brothers. I need her. Someone please tell me what to do to stop crying?
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
I am so sorry to hear about the diagnosis. My partner, aged 41, has been diagnosed 3 weeks ago. It was unexpected, we were thinking it was going to be something benign, and I have barely heard of MND or ALS. My initial response was 1. shock 2. fear and I was physically sick for 2 days. I cry a lot, all the time. When he is sitting next to me, when we are driving, walking, eating food. I too feel overwhelmed and am having a hard time making sense of the situation and the inevitability of the outcome. We were planning to try for a baby, I am 36...had some tough times and lately been feeling that I was about to turn the corner. And then the bombshell!

People have been telling me that emotions will eventually settle down. I want to believe them and just have a 'normal' life with my partner. One of my responses was to obsessively seek out information about ALS. I also sought some help in the form of counselling even though I have always been a sceptic. The news of a terminal illness has a domino effects - it impacts on so many aspects of our lives and so many people. I find it hard to speak to my friends and explain what is eventually going to happen. But I found that talking to someone who has been through a similar experience has helped (I spoke to a volunteer in my local MND branch, here in the UK).

I was told the good old 'one day at a time' which still does not make any sense to me. It is more 'one minute at a time' when one receives such terrible news. Has anything changed for me in three weeks? Well, I am not physically sick any longer and I feel less panic. I still feel enormous amount of fear, as well as a sense of loss (before the loss has actually occurred). I guess not feeling panic is a small step forward. I hope you find strength to make those small steps. Danijela
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
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On
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NW of Toronto
Hi Tammy. So sorry to hear about your mom. When you first get the news, it is like your whole world is collapsing. You'll cry a lot but as time goes on you have to realize that crying doesn't make it better. Helping your mother have a good attitude about all this is the best thing you can do for her. When I was first diagnosed 5 years ago my GP told me to make a list of the things I wanted to do and start doing them. Sort of like the Bucket List with Jack Nicholson but we thought of it first.
I did a lot of things on my list and still add things to it on occasion. The thing is, I have hope. I have a 2 year old granddaughter and a 4 year old and 1 due next month. The 4 year old lives half a world away but with web cams we see her weekly.
If you read the statistics you will be discouraged. I know I was. I'm beating the stats. We have other members here Living with ALS. Not dieing of it. Some here have had it 10 to 17 years. Your mom could be one of them. This is a crazy disease and no 2 are exactly alike. It might take a few weeks to get your head wrapped around the concept that it isn't all doom and gloom. You've been given notice that you may not have your mom as long as you thought. It's up to you to try and make the best of it for you, her and your family.
If you haven't already done it, register with ALS Society of Ont. They have loan closets for things she'll need down the road and advice on coping with the challenges ahead. You can contact them by going to www.alsont.ca Hope this helps. Remember, you are not alone.

AL.
 
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joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
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PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I am very sorry to hear about your newly diagnosed loved ones! But please don't assume it is a death sentence because it does not have to be. We live in a time where technology is such that we can live a long time and live productive full lives.
There is no reason your mother can't see your children grow up and be a significant part of their lives. She might not be able to dance with them but she can certainly interact with them and love them! Kids are adaptable and don't care if she can't play with them, they only care that she stay alive and is there when you visit.

Also, I know several PALS that have had children after their diagnosis and were still around to see them graduate and get married.

Don't give up and assume ALS has to be fatal!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Tammy, I'm so sorry for your mother's diagnosis. When I was diagnosed, I cried for 2 weeks. It seemed like the end of the world had just happened NOW.

I'm not one of the long-timers on this forum (yet), but it's been almost 3 years since my symptoms started, and my life has not fallen apart. I'm still the same person I used to be, doing the same things I enjoy that I did before the diagnosis. The only difference is a lot more trips to the doctors and learning how to manage some physical tasks differently.

Your mother is young and she sounds like a wonderful woman. As Al and others have said, it is possible to live a long and fulfilling life with ALS. I think your crying will slow down and stop on its own. Don't worry about it. It's a natural reaction to such a shock.

And as you help take care of your mother, remember to take care of yourself, too.

Hang in there.
 

califsand

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Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
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ca
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sant barbara
Tammy,

You'll go through stages of grief when hearing that someone you love is diagnosed with something like this. It's normal and part of the process you need to go through to accept that your mom is sick. As some wise people have already posted, there is hope that she will be around and maintain a good quality of life and be there for her grandchildren, for many years to come. It's not unusual to suffer from "anticipatory grief" during this time and your reactions are normal & healthy. You'll find a strength that will help you hold it together as time moves forward! One moment at a time, one day at a time, one week at a time... spend as much of that time with your mom focusing on life and do what you can, whatever it takes, to put the thoughts of the future to the side. By no means ignore the future, but the best advice I can give is to live in today. You have the opportunity to make this a special holiday with your mother at your side and that is a beautiful thing. I imagine being occupied with doing things for her grandchildren and children will bring her a lot of joy.

Take care,

Sandy
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Dear Tammy,
I am so sorry that your mom was diagnosed with this disease. You will get through this with the love that you have for her. You are in the begining and it is such a shock. The shock will eventually go and you will be able to begin to search for things your mom will need, support for her and yourself. Don't be afraid to ask questions or just vent. The people on this board are so understanding and helpful.
In friendship
Jeannie
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Dear Tammy,
I know this news is devastating to you and all you can focus on is the news. Please try to find a moment to think about your children, your mom, your family. Instead of looking inside at what is happening to you, look outside and be a focus of light for others. I know this is hard, I have been there and do that every day. Be thankful for the time you have left with your mom. Concentrate on making memories of the time that is left. Like AL said make up a list of things to do with your mom and the family while you still can.
Those of us who have ALS, try to focus on living each day to the fullest. Do not crawl into a shell and let this time slip away. At the end of this journey you can have many beautiful memories if you focus on the positive things ahead. I am not saying to live in denial, but to LIVE period for your mom. She has enough to face without worrying about you, right?
I know it sounds so easy for me to say these things and so hard for you to grasp them right now. I pray that somehow you can find a place of peace and strength in the midst of dealing with all this you face.
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
I just wanted to check on you and see how you were doing today. You are in my thoughts.
In friendship
JEannie
 

TammyB

New member
Joined
Dec 13, 2008
Messages
8
Reason
Loved one DX
Country
CA
State
Ontario
City
Maxville
I went to see her Saturday night with the kids to pre-occupy her mind. She sleeps in the "funny bed" (a mattress on the floor) with my son and they camped out. We woke up, I made breakfast for everyone and then got to work doing her Christmas shopping for her and buying her groceries. While I was out she andmy sone Krieger (2) made a cake-a ritual they have together, and I got them icing it on video....my daughter Reichen who is 18 months meanwhile ran around the house barking orders at everyone, typical for her. She looks like Shirley Temple and is quite the diva. We ordered a custom cake for Krieger's 3rd birthday December 28 and discussed my mothers wishes for how she wants her affairs handled down the road.

My brothers- all older than I, have not been able emotionally to come yet. I told them if they if they can't just come and hang out and laugh like things are normal, not to come....she wants things to remain happy and jovial until they no longer can be. My husband doesn't know what to do with me. The moment I was away from my mother's house I was beside myself with grief...I just curl up in the fetal position and cry. I fear for how things will affect my young marriage and my children. Most importantly, I want to make sure my kids remember her, and that she has things to do to keep her mind off things. I worry about appearing self absorbed while trying to keep her mind on the positive and playing with the kids. It is what she's asked of me and I am pushing through. Still crying like crazy at work though.

Is it wrong for me to plan a trip to the salon and to tell her to get out of her pyjamas? Is planning a trip somewhere a crazy thought? I am a travel agent and want to go away with her for a few days.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
After I was diagnosed my kids gave us a 5 day cruise. 6 months later we all went to Vegas and the Grand Canyon. I had said that I wanted to see it before I died. I am so glad we did both trips while I still could. Do what you can while you still can is a famous ALS motto. Do whatever you can to convince her to do things. She'll thank you later.

AL.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
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any
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any
Yes, I agree, PALS do live for each day! TammyB, sounds like a great weekend with your mom and kids, and that's what it's all about-making memories.
My 3 boys and my hubby didn't know what to do at first, they bought me new patio furniture, because they know I love sitting on the deck in the summer, looking at my plants.
Then we started planning a vacation, not something we were going to do this year, but we did it anyway. I was very blessed with dear friends at work and on this forum, and we spent a week at Myrtle Beach, enjoying the ocean.
If you were to ask my husband, he wants me to try every treatment in the world right now, I think mainly because he doesn't want to finish raising our 8 yr old by himself. However, if you were to ask my boys, they are a) very proud of their mom for getting her bachelor's in nursing this past weekend, b) very aware that ALS is not curable, as of yet, and c) they laugh more, love more, fight less, cry more, but they are managing like troopers!
Please know that prayers are with you, and you're not in this alone,
take good care,
brenda
 

califsand

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Joined
Sep 21, 2007
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237
Diagnosis
01/2004
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ca
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sant barbara
Tammy,

It is a great idea to take a girls trip with your mom and may be really great for her to do, even if she is hesitant at first about being out in the world. Dad & I went to Niagara Falls and saw the fall colors in upstate NY. There were some challenges but he could get around no problem and we had a great time, I will never forget it. Getting out there and living with your mom may help you both tremendously! :)

Sandy
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Great for you Tammy, good start.
My Mom and Dad have passed away for some time now, and my wife's folks too. What is it that we both hold dear in our minds when we think of them?
Memories.
Quality time spent together, enjoying one another's presence. Sometimes just sitting quietly looking at the stars or a sunset on the beach. A trip we all took to see the mountains, or color change of the leaves. A waterfall that we could have looked at all day. Beautiful rainbows flashing through the midst of the waters, and that wonderful sound of the rushing waters.
Memories of LIFE will last long after we are gone.
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
Tammy, yes, plan a trip! Or plan something! Getting the diagnosis can be like getting hit by a truck...and then walking away with the expectation that the real trauma is yet to come. It's really hard, but it will get easier with time. Try to focus on the short-term, rather than the long-term. Maybe your mother won't see your children graduate from high school or get married...but that's so far off into the future that so many other things could prevent that same goal--people DO get hit by trucks, and everything changes. Maybe she WILL see them do those things, though. Who knows. The most important thing, in spite of how hard this time is (and should be--you should be upset--it's natural), is to try to cherish the time that you have together. Time is a gift that not everyone in this world receives, so take full advantage of it.
 
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