everythings happening so fast

iri526 · 08-24-2009, 12:39 AM

I absolutely hate this disease. Im 16 years old & my grandma who is like my mother is in her final stages of it. She can't move any part of her body besides her head. I can't even understand what she's saying anymore. She just looks so sad & nothing I do helps.she doesn't want a feeding tube so we are giving her soup & other things that are easier for her to swallow.I know i don't have much time with her anymore.all I want to do is curl up into a ball in my bed & cry.I don't understand how this can happen to one of the most loving people in the world. I've never lost anyone.& I want to be with her when she passes to comfort her,I know it won't be easy so does anyone have any advice on how to make it at least a little easier?

paleshia · 08-24-2009, 01:17 AM

hi dear, i am so sorry about your grandma. life is so hard sometimes. remember she is still thinking and feeling and loving you too. even if she can"t respond, she is receiving your love on the inside. i have a daughter your age and hope with this disease that no one forgets that i still want to feel, even i can't function. i will pray for you and your family. plus take care of yourself too, you will have more hope and energy to give to her that way. don't you have school tomorrow? you should get some rest

that's the mom of teenagers in me

love and prayers'

jen

Senegal · 08-24-2009, 02:16 AM

Dear Iri526,

It is indeed very,very hard to be where you are right now. Please try to eat well, drink lots of water and get some rest.

I recommend that you talk a bit with someone who loves and cares about you. Try to chose some special things to do for you and your grandmother; if you haven't already gather some pictures that you can share with her...pictures of happy memories..read some of her favorite poems, short stories..if possible play some of her favorite music. If possible massage her hands with scented lotions/oils. Go for walks...do what you need to restore yourself then do the things over again for your grandmother.

Also, please know that crying is perfectly fine...you may need to cry alone sometimes and with someone at other times

I have a teenage daughter and my heart is with you.
I will keep you and your family in my prayers.

pamnandy · 08-24-2009, 07:10 AM

HI Sweetie,

Can your grandmother still answer yes and no questions? If so, ask her if she'd like some lotion rubbed on her feet, legs, hands and arms. This will feel good to her if she says yes. Maybe you can paint her nails as well, just because it's a way for you to be close to her. Keep talking to her about anything and everything. She loves to hear your voice. If you notice something that she might need, speak up on her behalf. This disease sucks big time, and the little things that we notice makes all the difference.

The man I took care of was named Andy. He had two teens. They made sure to bring in a cd player and played his favorite music for him. He enjoyed it very much because he really didn't feel well enough to watch tv. A friend came by every evening to read him the Bible, some favorite passages. We all would have "normal" conversations in his room as well, so he didn't feel lonely when he was awake. If your grandma has been missing church, upload the sermon and play it for her.

I guess anything you can do make her feel comfortable and loved. You know her best.

Be sure to give yourself a break every day and go for a walk. Is there a good friend you can talk to? A favorite teacher you can lean on? Don't be afraid to just go and say, "I'm having a hard time with this." She loves you sooo much, and I bet she is worried about you dealing with all this.

Hang in there. We are all here for you. Also, check this site out: http://www.als411.ca/ It's a support group for teens like you.

Blessings,
Pam

mehenry · 08-24-2009, 02:38 PM

Hello, I am new to the forum. My mother was diagnosed mid 2007 with ALS. I am the daughter/caregiver and she and my ailing father live with me and my saint of a husband. There are seven children in my family but three of the seven are the main caregivers. Two just say they can't handle it. One does help with odd and ends like cleaning, laundry etc. and the baby of the family used to be more help than now as the desease progresses. Hospice is in and is very helpful. Mom is a paralyzed from head to toe and has been struggling with swallowing. She just lost her voice in the last three weeks and so it's been really tough trying to communicate with her/with us. I feel like I am so burnt out, I am not sure how much longer she will be with us because she is so thin and it is so hard to get any food or liquids into her. I'm scared for her.

Margaret

GlenBrittle · 08-24-2009, 06:46 PM

Hi Margaret,

Welcome to the site. I am sorry that both of your parents are sick. Please feel free to come in and unload your thoughts, frustrations, fears. We are great listeners , and have a wealth of experience to share . You are not alone.

Have you thought about a PEG for your mom ?

Have you contacted your local ALSA chapter for some help ?

Glen