what do I say?

[crow330]

I've posted only a few times on here....

My mom has ALS - the genetic kind (so my fate is also a worry...). But right now, my biggest worry is my mom's emotional state. She attempted suicide in Aug of 2012 when she first started having trouble walking. She attempted suicide again in Feb 2013 and spent a month in the hospital. Tonight she begged me to help her kill herself. I told her I would support her in any way I could but morally and legally I can't help her kill herself.

What do I say? What do I do?

She has a live in aide and lives just two blocks away from me. She still walks a little and has activities and friends and family around her every day. But it's just not enough.

Anyone have experience with this? It's quite a weight to carry.

Thank you!

 

[vickim]

I am sorry for you and your mom. I think you did what you could by telling her you can't help her end her life. Maybe she needs some meds to help with depression and anxiety. I am sending strength and hugs to you. Wish I could help more.

I am sure someone else will chime in soon.

 

[crow330]

Thank you so much for your response, Vicki. She is on antidepressants and anti anxiety meds - but her psychiatrist has actually said he doesn't believe she has depression - she has situational fear and sadness. But she stays on the meds just in case they're helping at all.

 

[vickim]

Does she have a religious preference, church or clergy that could help?

 

[crow330]

No - she is not religious. But she has a therapist and a psychiatrist and lots of support. She watched her father die of ALS and she has said quite clearly that she just doesn't want to die this way.

 

[vickim]

Well some times the old saying ignorance is bliss is good. She knows what is coming down the road. I am sorry for that. But it doesn't sound like she has progressed as much as some here. Does she have a advance medical directive? She could choose to be a DNR(do not resuscitate) and that might make her feel like she has some control.

I wish I could be more help. {{{{HUGS}}}}

 

[Nighthawk]

Hi,

It is a very difficult situation for you and for her.
When someone attempts suicide is a desperate attempt to escape suffering that has become unbearable.
But I think you should let her know that you care, that she is not alone. The right words are often unimportant. Also let her unload despair, ventilate anger. No matter how negative the conversation seems, the fact that it exists is a positive sign. Offer her hope. Reassure her that help is available and that the suicidal feelings are temporary. Let her know that her life is important to you.

Just try to defuse the situation.

I hope I could be of more help or have the right words for you but remember that we care about you and your mother and we are here to help. Is she able to type and read?
She could log in here and exchange with other people undergoing this disease and she would feel like among family.

I wish you peace and comfort.

NH

 

[Nikki J]

I am so very sorry. FALS is unbelievably hard. When you have seen it up close and know the road you are on it is a nightmare. It sounds like you are doing all you can with support etc

I wonder if you can help her feel some purpose or hope? Researchers are working on FALS. Has she (and have you) participated in any of the FALS studies? Do you know your gene? There is hop e from antisense technology for sod1 and c9orf72. Sod1 has finished phase human trials. C9 hopes to start next year. If she is slow progressor eecially there is ho pe

 

[skipper66]

I personally feel that your mother definitely needs to be kept on a antidepressant at this time due to my own personal experience with depression. It won't totally lesson the situation but it will help some what. I feel from what you said that you are definitely doing the right thing by keeping the line of communciation open. Please continue to let her voice her concerns and validate that her feelings are truely legit. Get her involved in decision making in the family or anything that can get her involved so she feels she is valued and needed in the family. If she discusses death let her know that many of the PALS who have passed have done so peacefully. This may also be a strange suggestion but it could help her overall mood a little if you make sure she gets out in some sunshine. I know it helps me out. Hang in there. I've been in your mother's shoes due to very different reasons. But, family and friends have stood by myself and their love and support has saved me. Prayers coming your way. Kim

 

[Barbie]

Man, I can only imagine how hard it is to have FALS, and to have watched someone die from this disease and then be diagnosed yourself. you guys hard a terrible row to hoe--so awful and unfair.

I don't blame your mom for wanting to commit suicide but I know personally what a weight that puts on the family. it is a terrible burden. How do you feel about it? do you think it is ok for her to go or do you want her to stay? There is life after a diagnose but only she can know if she can deal with it. she probably feels pressure because her time to do the deed herself is short but it is not right to ask you to help. IMHO, if you support what ever decision she makes you should tell her but also make it clear that she has to do it herself.

I am sorry you and your mom are in this situation.

All my best to you both...

 

[johnnyliverpool1]

i gt the sense that your mum is more concerned about the end stages of this terrible thing....if her fears were lessoned she would maybe get more out of her life now......if she knew that whenthe time came she would be helped............but then again, i believe we should all be able to decide our own destiny....this is the toughest desease and requires the toughest answeres..........i know what i would do.......god bless johnny

 

[crow330]

thank you all so much - just being heard has helped me... this will be an ongoing struggle.... not sure what to say - I will reach out again. I wish you all strength and think of you so often. I am so lucky to be healthy for now. My mother is loved and cared for as much as possible. I guess that's all I can do.

 

[old dog]

Dear Crow - So sorry to hear of your family's situation. Because you are a loving and caring family and your mother has been in your shoes, she may be feeling that she doesn't want to put you through some of the things she had to cope with as a caregiver. I wish I had some magic words of encouragement for you. All I can suggest is to try to reassure her that she isn't a burden.

 

[lgelb]

If she is still walking a little, Crow, your mom doesn't need your physical help to kill herself, as demonstrated by her two attempts (possibly others you don't know about).

So I agree that she is reaching out and I would ask her what she really wants you to know about her state of mind. If she is in constant agony about her situation but still wants to live, there are drugs other than antidepressants and therapists that can help.

But I believe that suicide is a human right and so I would be in touch with Compassion & Choices, which offers counseling and other support toward making and implementing the choice that is best for the patient herself. This is the contact info for NY:

Compassion & Choices has an end of life counselor, Pamela Edgar, MA, RDT, LCAT, CDP, and a volunteer team that works with terminally ill patients, their families and caregivers. Please call 646-669-8787

Their NY Web site also offers links to planning documents, always good to have completed and understood, as others have suggested.

This is a complex topic so C&C or some other joint counseling might help you and your mom plan the best way for each of you to find peace.

Best,
Laurie