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sisters

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Apr 30, 2013
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Loved one DX
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Indiana
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waynetown
I'm not sure how this works. My sister has ALS and has been diagnost for 3 years now. She is now in a nursing home being cared for by hospis at this point. Pain management. My sister and i have been very close close growing up. I was there from begining when she found out she had ALS. I use to help in her home at the begining. Im a small person only 4"9 so It got to were i was unable to do much. Now that she is at the nursing home i was going to be there for her alot. Some time has past and she has got worse little more each week. I feel so guilty because i know it is hard on her and she must feel alone most of the time. Each week i go to see her it gets harder not to break down and cry in front of her. But i have held together face to face. We was so close and best friends still are. But to see her that way each week getting little worse i having hard time seeing her like that. I push to go of course because though i feel bad inside and hurts not even close to how she must be feeling. She having trouble eating and hard time staying awake. Im looseing my only sister and im not sure how to take it how to feel so many feelings at once. She has 3 young boys 9 to 13. A husband that loves her more then anything in this world. It was my mom and my sister and me for long time. So my sister and my mom is everything. I just at point im speechless with her almost i sit and stare and watch tv with her. I can still make out words she trys to say on good days. I just love her so much. And i have prayed and prayed that i wont have to loose her. I dont know how to help her or what to say or how to cope with what is now happening. I guess i just kept telling myself she would get better. I never really read up on ALS till recently because i was in such denile even though i seen what was going on slowly but now shes got to the point where shes got pretty bad fast. Im sry i just feel selfish. Talking about how am i gonna handle it. Plz give me advice. What can i do? How do i help make things easier for her?
 
I'm so sorry to hear your story. Your heart must be hurting so bad. Have you talked to hospice about resources to help you? They provide that for immediate family. Do you have a doctor or counselor? All the things you mention must be so difficult and there are people that can help you. There is nothing easy about what you are experiencing. God Bless.
 
It would be good for you to seek out a social worker or grief counselor. Grief is not limited to after the death of someone we love but rather begins when we know they have a fatal disease.

It is likely your sister needs your company right now. Love her in every way you can right now - hold her, talk to her, read to her, sit in silence with her but don't stop going to see her. While you are there put aside how you feel and be all in for her. You can work through your feelings before and after you visit with her. There is nothing wrong with her seeing your tears. Tears are an important part of who we are as human beings.
 
yes, visit as much as you can---time is short and you will not regret it later. maybe you can take old family pics in with you and reminisce about fun times. memories are so wonderful to relive and can get you both laughing. maybe you could do her nails, or brush her hair or style it or read to her if she can't hold a book. find a naughty book you can both giggle over and read a little every visit.

Mary is right--you are grieving now. Hospice does have social workers for the patient and the family.

good luck to you
 
Family pics are a good idea. Maybe, make a collage of family pics to put in her room.
 
My sisters are a lot like you! Caring and generous, and yes, sad at times.

We often sit in silence. It's a silken silence. A silence that drowns out the world around us and casts a safety net around us. Sister silence is a rare gift, shared by those who love each other. A glance is all it takes. We know what each is thinking and these glances often provoke a sisterly giggling fit. Or crying fit. No matter. Our time together, past and present is a gift. Our collective memories will live on. Some through our children. And their children.

Just be there. For her and for you. Sister love does conquer all. It will be there for you to lighten your darkest days.

You are a wonderful sister!
 
PALS are usually sensitive to other people's guilt, fear and anger. We hear it in the voice, we see it in the gestures. It can feel uncomfortable. If you are unsure of yourself, just tell your sister like it is. Use humour. Funny is good.*

Remember that saying "you can't judge a book by its cover". Of course, her body is changing (that is ALS) but she is still the same person. Look past her body and focus on her eyes, her mind and her soul. Just be with her. Be true and authentic.

Relax. Focus on being with your sister and simply enjoy. Stay calm, center yourself and be there for her. I like the ideas of painting nails, doing foot and hand massages, reading aloud or watching a movie. If her eyes are closed, she will still know you are there with her and will appreciate it. Relax, you are good sister and I am sure she loves you to bits and pieces. I hope you find peace.
 
I would want my sister to play me my favorite music, talk about things in her life that I would be interested in, keep me up on the news of the day outside, watch classic videos w/ me, bring some plants, take me out to a garden or wherever else I could go, and to be honest. Knowing her, she would be misty-eyed most of the time, but I would know that to be her true self, the best support you can provide.
 
Sister that love you are a blessing. Hugs to you for being there.
 
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