Watching my sister die

[Nightfaze]

Hello,

My big sister was diagnosed with ALS in august 2011. It is now december 2011 and she has already been confined to a wheelchair. I am so angry that she can't walk much anymore, she is tired and has lost muscle weight. I went shopping with her two weeks ago, we used her wheelchair and it was scary to see her disease progress so fast. We laughed allot, I was so clumsy, but people around us were so patient and kind. We looked like two little teenagers.

My sister just gave birth in july, by the time she was diagnosed, the doctors told her she could not take the baby in her arms unless she was sitting down... in case she dropped the baby. She just turned 40 years old. It is so uncommon that someone so young is diagnosed with this disease. My family finds it so hard to watch her slowly die. I mean, I find it hard.

Most people don't know what to say, i hate talking about my sister because when i start talking about her children, how young they are, how much her husband loves her, it sounds like some terrible soap opera, and not anything like the life I ever intense my sister to have. It just doesn't sound real, it's so terrible and heartbreaking, how could this be happening? My friends are more upset than me, because i'm trying to keep it together! I'm trying to be realistic and think of everything she needs, what I can do to make this easier for her... but my own life is messy and needs some serious dusting.

I keep randomly bursting into tears... it's like i'm mourning every part of her she looses, i'm crying because she is laughing. I'm crying because at this rate i have a feeling she won't be there when my boyfriend asks for my hand in marriage... when i walk down the aisle... when I get pregnant... and on and on the list goes in my head. i'm here in the moment... but at the same time so far away.

 

[Felica]

I so understand where you are coming from. You are right it is not fair You have come to the right place So very sorry about your sister and with a new baby and small children. Sweetie. If you need to vent scream or just cry. I am here for you. Hugging you. Felica

 

[Ms. Pie]

How is your Sis doing mentally/spritually? Try to celebrate her. Help her do this with Grace. I have 6 sisters and they are such strong women. We're strong for each other. My Mom says "If Marta is alright then I'm alright!" and she means it too! So, I'm great! We cry a little sometimes but mostly we laugh with sincerity. We love each other so much that we're fierce in our celebration of our blessed lives. Try not to waste time in sadness Dear One. Celebrate life!

 

[MuonOne]

Nightfaze, I find myself wondering if there is an ALSA organization in Canada that might be able to offer some help and guidance . . . Homepage - ALS Association might be able help you find one or might give you some advice . . . younger individuals usually do not progress as fast. This is certainly not the easiest disease to deal with. Prayers, best wishes.

 

[EGBAR]

Sorry to hear what you are going through, we are all trying to deal how things progress. There are no dealing with ALS for dummies books that I know of and doubt that they would help anyway. The fact that you found this site and have posted your message shows that you are so involved and well intentioned for your sister and who could ask more than that. lets us know what you need, even if it is to just rant.

 

[Georgia Peach]

So sorry for the grief you are suffering over all the losses. I couldn't get past that for a while and would cry at the drop of the hat over the changes that my husband was experiencing.

And the fact that we would never grow old together. No longer able to walk or stand, or use his right hand but he is still eating, watching his favorite tv shows and using the computer. We are able to go out in our van and go shopping together and eat out if I cut his food. Your sister is lucky that she has you. We try to find some joy in whatever we do for the day. Being on this site is so helpful, so stay connected with your new friends on this forum. We do understand. Just know that the disease is different for every person as is the progression. We had hoped that we might have 10 years like the doctor predicted but no such luck.

 

[KissJ]

I am so sorry! I HATE ALS! Pray Pray Pray... I'm praying for you! Pray for a cure. God Bless!

 

[HelenL]

I'm so sorry that your sister has this diagnosis, and especially that she has young children during this time... that's what breaks my heart about when I heard my diagnosis, was the thought of my children... they were 11, 13 and 16 at the time.

You're going through all the phases of grief, and you should try to find someone you can talk to about this, so you can be there for your sister. There comes a point where we get to a certain kind of acceptance of "it is what it is", and we just go forward and live our lives. I choose to believe that I am living with ALS, not dying from it. But I'm "lucky" in that my progression has been slow...

Keeping you in my thoughts and prayers...

Helen

 

[susanf]

I'm sorry about your sister. There are many of us here with kids. I have a 12 year old but there are many like your sister with really young ones. Like Helen and Marta said we like to think we are living with this. It's only fatal if we wish it to be.

 

[Al]

Have you registered her with ALS Ont.? Home I'm pretty sure they're active in Ottawa. Go to the web site to get the local chapter. They have info, support and loaner equipment.

AL.

 

[lisaohgee]

I am so so sorry. I cannot imagine your poor sister not being able to care for her new baby. How absolutely heartbreaking. I do the same thing with my mom, knowing she won't be here to see my kids go to their first day of school, play sports, how she's missed out on everything she always wanted to do as a grandma. This disease SUCKS.

 

[Atsugi]

Nightfaze,
Nothing good comes from constantly being sad. Take an anti-depressant pill.
Sorry I don't have any reassuring platitudes and faith in God, etc.
If you needed that stuff, you'd already have it.
So what you DO need now is to take a pill so you can A) help you sister and B) get on with your life.

 

[Valerie]

Dearest Nightfaze,

I am so saddened to see your post. I understand the feelings you are having so well as I travelled the ALS journey with my mom. It was so hard for us but I can't imagine the added pain with your sister so young and having a wee babe too.

Although we grieve for our loved one and all the losses to come, we are also grieving for ourselves and the impact of those losses to us.

The ALS Society is just down from the Pinecrest shopping centre. They can certainly help you out, find support you might need, be a listening ear... they also have an equipment library and can help you out as a family member also. Is your sister here in Ottawa too?

Although my mom lived in the Laurentians, we used the ottawa support ourselves and they were helpful to us. If you have any questions, I will do my best to answer them.

My thoughts are with you, your sister and your family.
Valerie

 

[Atsugi]

A thought just occurred to me that might make a difference.

I was never watching her die. Together, we were living, minute by minute.

Although Krissy was in our home every day until she passed (she died surrounded by family in her hospital bed in the living room), I never thought I was watching her die. My time frame was different and what I was seeing was different.

Although we knew she would die someday within a few months, I was so busy I could only think in terms of hours and minutes. Toward the last month, "staying two steps ahead of the disease" meant trying to anticipate and prepare for what she would need in the next day, at the longest. So I never had the time to "watch her die." Instead, she and I together continued to go through life.

I rarely thought of her dying. I thought about her physical and emotional needs NOW. And we have kids, so I was always thinking about how she would want our children to be involved. As Kris was a medical doctor, together we taught our teens how to diagnose and treat their mom's minute-by-minute needs.

Think good thoughts. The pills ensure you think good thoughts. Give it a try.

Watching someone die only destroys your spirit, and does nothing to cheer them. Instead, LIVE LIFE with your loved one, minute by minute.

 

[Pat4t]

Sorry to hear about your Sister.
I have ALS. The facilities here in Ottawa are very good. Get in touch with the Ontario ALS Society they will offer you a lot of support.
I cope with ALS by living one day at a time. Like your sister I am loosing many physical things. At the same time, because I know my days are numbered, I live with a heigtened sense of awareness. I have been able to draw closer to my wife, my family and my friends. We have experienced much joy and much sorrow. I wish the same for you and your sister.