Learning to cope

[nora]

It took me a long time to join this forum. I used to come and read some of the posts when I was feeling sad or confused, but I never wanted to join because I didn't want to have to come to terms with the fact that my mom has ALS. Somehow, joining seemed like giving up on the hope that maybe what she had wasn't really so devastating, so terrible, so sad.

She has been having symptoms of bulbar ALS for about a year - difficulty talking, swallowing, emotional highs and lows, etc. Her speech has gotten progressively worse. She can't eat certain foods and sometimes has choking fits like she's choking on air. Those are scary. As far as I know, that's the extent of her symptoms, but she doesn't really like to talk about it - I think she is trying to protect us (her kids). Last week, she went to the doctor again. She didn't tell us she got diagnosed, but I'm pretty sure that's what happened. I feel like it's almost to the point in our family where we're all scared to talk about it because we don't want to come to terms with this reality. And we don't know where to go from here.

I feel like I've been punched in the stomach. The way I had envisioned my life - my mom at my wedding, my mom as a grandma to my kids, my mom as a fit old lady (she takes such good care of her health.. she even ran a 10K a few months ago) - it all seemed to be taken from me so fast.

And her? I can't even imagine what she's going through. She has always been the rock in our family and stayed strong through everything. She must be scared, she must be sad, she must feel somehow cheated. I don't think anyone can be prepared for something like this, no matter how strong or resilient.

Anyway, I don't really know the point of my post. More than anything, I am grateful that there is a community of support out there for people who are affected by this. I'm glad there's somewhere I can go when I need to talk or vent and that there are people who can relate to what my family is going through. So, thanks in advance. I look forward to hearing from any of you.

 

[brooksea]

Very sorry Nora about you mom!

Hopefully you will be able to gain much form the forums here.

 

[joelc]

I am very sorry to hear of your mothers diagnosis. But don't despair yet as she could have many years yet and be at your wedding, see her grandchildren and be at their graduations and weddings, etc. With modern technology she can continue to live a productive and fulfilling life for a very long time.

Welcome to the forum! I hope we can help and be of some comfort to you

 

[nora]

Thank you guys! I'm feeling much more positive today. My mom is a fighter and I know that my family can stick together through anything. Thanks for the support!

 

[QsMom]

My mom just got diagnosed too

Hi Nora!

I totally understand your pain; my mother just got diagnosed and I just lost my father 2 months ago. I have an 11 month old son and find myself very sad by the fact that by the time he is 5, he may have no trace of grandparents from my side of the family!

One way that I am coping is by educating myself and finding ways to encourage my mother and guide her treatment so she can be as comfortable as possible for as long as possible; that seems to be half the battle! I am not sure if my mom has bulbar, but she has the EXACT same symptoms you described that your mom has. I admit that while this forum is painful and sad, there are glimmers of hope everywhere and the education that you can gain here is top notch as many of the members are suffering every day with this horrible disease!

Another thing that I am doing to cope is volunteering my time to work with the elderly. I am working on a volunteer program that would provide scrapbooks to elderly living in assisted living facilities or nursing homes. I find with the sudden loss of my father and the inevitable fate of my mom, it is inspiring me to find a positive avenue for my grief (instead of the many bottles of wine consumed when I was victimizing myself). :lol:

Whatever coping mechanism you choose, just remember to be a little easy on yourself. I don't know if you are like me but I had no clue how terrible ALS was until my mom was diagnosed. It takes time to digest the reality and sadness of this awful disease! I would like to share with you advice that my father used to say to me; "give yourself one day, one week, or one month to have a pity party for yourself; then hit the ground running to FIGHT!"

I hope this helps and please know, we are all in this together, you are NOT ALONE!

Sincerely,

Tanya

 

[mom2one_06]

I could almost have written your post.

We recently learned of my dad's DX on 5/31/09, he's 62. He may have had an idea for a while that the Drs were talking ALS, but they kept us in the dark as well. My dad is super active and truly the rock in our family as well. So many of the emotions you describe are similar to mine. I feel angry, sad, cheated. I'm super close to my parents, I have two small children. The thought of caretaking, seeing my dad's continual decline, and most importantly the loss of someone I imagined would be here for another 30 years. We have dreams that include our loved ones being here and not suffering from this horrible disease then being taken much too soon.

I have only been reading posts to this pint as well, as it does make it so much more real to actually write the words. To every single person on here affected by this, my heart goes out to you.

 

[hopealive]

Nora,
I could have written your post about 3 years ago. My mother sounds exactly like your mother. Bulbar symptoms were her first. I have been in your exact shoes. All of the feelings you are having I had and still have. I am here if you ever need advice as to how to navigate through the disease, ideas on living well, and ways to cope. I am so sorry you are going through this. My mother only had bulbar symptoms up until 6 mos before she passed and then the symptoms sped up. I say this because she may be the same and be able to walk, even run, golf, whatever and only be unable to speak. Hold onto hope. I was terrified in the beginning and realize I didn't enjoy the time we had in the beginning. It is just all so scary. I know.
Love,
Holly

 

[MtPockets]

Welcome to the Forum.

Welcome to all the new members. Sorry for the reason you had to come here. I know if you stay for awhile and open yourself you will receive comfort and answers to many questions. Below is some general information for one of my posts.

I know many have seen this before but for those who have not here is what the Docs say we face:
Denial
Bargaining
Anger
Depression, Anxiety, Grief
Acceptance

What you are feeling is not unusual. Just wanted to let you know we have been through what you are going through. There are times when we backup a few steps and start again, it is not unusual.

How do any of us cope?
There are several ways depending on your personality and faith. It is never easy. Many do not understand how we feel and react to so many things while going through this.
You are not alone.
We have walked in your shoes, and can tell you there is hope.

One thing that seems to help, is to focus on making memories, good memories one day at a time. Please, do not dwell on what you or your loved one cannot do, but what they can do and do it. Do not sit around in self pity and let the time get away from you and leave so many things undone. No matter how bad you feel, make an effort to make this a good day. If we start each day with the idea, what can I do today that we can enjoy, every day. Soon you will look back and see the wonderful time spent with each other, and the memories that will last a life time. this is not just about you. It effects everyone who knows you, comes into contact with you, and cares about you.

I wish I had a magic pill to make it all go away, or a cure. All I can do is do the best I can with what I have to work with today.

A merry heart does good like a medicine the bible says.
We can always look around and see something to be thankful for in our lives.
If nothing else it is we have been given TIME.
Time to make things right with others.
Time to do some things we have always wanted to do but put off.
Time to access our relationship with Father God.
Time to write a Will, or a book.
Time to sit and talk with our loved ones and let them know we love them.
Maybe even time to ask forgiveness.

We are blessed in this one thing that many who die never get the opportunity to do. Please, use this time wisely, and try to remember everyone has to die of something eventually. We have time to prepare at least. I am thankful for that.

 

[Wendi]

Thank you for writing Nora, it seemed like I was reading something my kids would be thinking... and as we don't talk about ALS much it was really refreshing, if that sounds strange... It just helped me to understand my kids better. Thank you for that, I am where your mom is I suppose.
wendi

 

[thelma313]

Nora, I am so sorry to hear about what you are facing. I know exactly how you feel when you say it's like you have been punched in the stomach. I also felt that way last summer when my dad was diagnosed with ALS. I just really did not see it coming at all and the diagnosis just knocked me out!

An ALS diagnosis is a difficult fact to face and I can sympathize with not wanting to make it real. But now that you have shared your feelings here on the forum you have taken an important first step towards acceptance. Unfortunately it is a fact that you have to face as a family and as hard as it is, if I were you I would tell your mom that you are there for her and that you will fight with her. I know that seems like a hard move to make but your mom might surprise you and appreciate the support. Like Capt. Al said right now the main focus has to be to make happy memories and to face one day at a time.

Believe me if I had one wish in this world it would be that there was a cure for ALS and that all of our beloved PALS would be well again in a heart beat! And yet despite the horror of this monster disease, my dad has shown me a side of himself that I never knew I'd see and we are closer than we have ever been before. It is bittersweet I know... but it will help you tremendously to share your feelings with your mom and ultimately help her too. My dad was never a touchy feely kind of guy. He was always a tough, hard-working blue collar kind of man's man and we didn't always get along but today he is a sweet, tender, gentle person and he hugs tight and smiles wider than ever.

Like Joel said, your mom could very well be around for your wedding and to see the birth of her grandchildren. No one knows what the future holds and a wise person on this forum once said, "Don't borrow tomorrow's troubles today." Words to live by.

Nora, you are not alone by any means. You vent whenever you need to and if you want to punch something beat the crap out of a pillow, but don't keep it all inside. That's what we're here for. Welcome to the forum and sorry that you had to be here. Know that you are in my thoughts.

 

[MtPockets]

I could not have said it better. Might even write with a marker, ALS on the pillow you beat up. ;-)

 

[thelma313]

That is a great idea, Capt. Al!

 

[lisaann1170]

Nora,

My heart goes out to you.

My father was diagnosed last month after probably 18 months of symptoms. I find myself at two extremes; some days, I have a lot of clarity which inspires me to fight, but other days, I cry because I fear my father will never meet my next child. My husband and I are adopting from Ethiopia and the wait for a child continues to increase. On my bad days, I obsess that this delay will leave my future daughter without a grandpa. Today is a good day. Today, I feel like the delay in the adoption is one more reason for me, my dad, and the rest of our family to fight.

My dad has always been "spry." That's how his neurologist described him at the most recent appointment! Your mother's energy may be her greatest asset.

I have to agree with what others, including Thelma, have already said; this disease has actually brought me closer to my dad. We've had more significant conversation in the last 5 or 6 weeks than we've had in the nearly 40 years before. It's lousy that we have to go through this, but my relationship with my parents is better now that it's ever been.

Best to you and your mom!

 

[nora]

Thank you all so much. You have no idea what your words mean to me!

 

[mare]

We do know, Nora, because we all start out exactly like you.

Keep coming back, because it is very reassuring knowing that people "get it"; it doesn't change things, it doesn't make it all go away; it just is a safe place to be to ask questions, gather information, exchange feelings & sometimes to just let off a little steam.

We are all going thru this together- AND, we will all get thru this together!