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crow330

Member
Joined
Jan 19, 2013
Messages
12
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
NY
City
New York City
My young, otherwise healthy, mom, has "probable ALS".

My mother's father died of ALS and she quite simply does not want to die that way. I am her primary caregiver now and she tells me every day that she wants to die. She has a therapist, is on antidepressants and anti anxiety pills, but the depression and fear of dying is winning.

She does not want to fight the disease, she does not seem to care that there are many of us she will leave behind if she chooses to die, and yet, I understand why she feels this way.

The pain and guilt I feel every day is overwhelming me and I just don't know how to help her.

Has anyone else has experience with this?

~crow
 
I am so sorry for you and your mom. I have no advice to offer, I am sure someone will chime in with some of their experiences. I just wanted to tell you that you are not alone in your struggles. We will listen , answer questions, laugh, cry and pray with you.
 
You have come to the right place for support. Sorry about your Mom and you. Is the probable diagnosis recent? If so, she may well come out of the initial "shock fog", and engage in life again. Sounds to me that she is getting help to overcome her depression, but I dare say, medications are not always the antidote to despair. Hopefully the therapist will be helpful and perhaps a few meetings with the entire family may also be useful.

Would your Mom like to visit this forum? She would quickly learn that there is life after diagnosis. There are wonderfully kind and supportive people here, reliable information and which can also help buoy her spirits. In addition, management of this disease, to ensure quality of life, has greatly improved over the years. It may not be the same experience as your grand father's. The ALS society here has volunteers who visit with patients; this may be another option for your Mom to consider.

While it is not my choice, some people opt for no intervention whatsoever to prolong life. It is indeed a personal choice.

I read your second thread about Manhattan activities and services, but alas, I've only been a tourist in your great city.
 
Crow I have been in your shoes with my father-in-law. It was not A L S, but he had pancreatic cancer. He was very prideful and even rather vain as he was a good looking fellow. He was horrified by the thought of losing weight, pain and becoming helpless. He moved near us when diag nosed and in his first week here he said he did not want to die a slow and agonizing death. He asked me to help him die by suicide. My husband was shocked speechless, and I was not overly caught off guard as I am a nurse and worked in psychiatry most of my career. We talked about his fears and I told him that we would help him in anyway that he needed and wanted. In many ways I was uncomfortable giving him the impression that I would assist his suicide, but I knew he was asking to be heard and to be assured that he wasn't going to be left to die in some agonizing way.

In my heart I was saying that I would not let him suffer and that I would ensure that he had good drugs when he needed them to address pain and fear. But I also knew from my life experience that he was still in shock over facing his impending death and that he just needed to hear that we wouldn't let him suffer. He never again reached the point where he asked or talked about suicide. We ensured that we were with him when he was actually dying and that he had the medication that he needed for him to be comfortable and not afraid. How we handled his situation worked out, but each person is so different. I think that the important thing is to find ways for your mom to talk about what is going on inside her head and heart. Medication can numb feelings and elevate mood from the darkest depths, but she knows the reality of what is ahead because of her dad. She needs to be able to make her own choices about things like a peg and BiPaP, but she also needs to hear that those things can make her more comfortable. Personally I don't believe encouraging someone to want to live for the sake of the family is a fair thing to say. I think that should not be part of conversations. The conversations should be about her and what she wants and needs and what scares her the most. When you know her fears, you can help address them with her. Elaine mentioned suggesting for her to come here and that is a good one as she would see people living with A L S who cherish every day. Sending you lots of good thoughts.

Laurel
 
Suicide is horrible, but she just wants to feel like she has some control over things and some options. Let her know you understand why she feels like this and that you love her and support her no matter what.

I don't think you can really stop someone from taking their own life if they are set on it and I think everyone has a right to die on their own terms. It is the ones left behind that are most devastated by it. Boy, there is no easy answer--I am so sorry.
 
God i feel for you and your family. I think that medication can help to dull the pain/lift mood somewhat but doesnt take away the fear or the real distress/chaos. It is a very difficult situation made worse by her having seen the disease up close. Can you sit and talk through the fears, perhaps with one of the medics/nurses? Would it help to reassure her that when things get tough that she will be kept comfortable, to talk through what interventions she wants/doesnt want? All you can do is try keep talking, try surround her with friends & family to comfort her, sit with her, take her out etc to show that there are people that care. Depression makes you close down and push people away - try keep people around her and also to support you too. Hope things get better for you soon.
 
My best advice since I have suffered from major depression since high school is to listen to her. Let her talk about her feelings. Let her do most of the talking. I don't mean to sound ungrateful but I don't feel being on this forum until she comes to accept that there is life after diagnosis should she be on this forum. I feel in my personal opinion that it would only make her more depressed. She doesn't need to read what is going on with other's symptoms at this time. It is just too scary and painful. Try to surround your mother with as many positive situations and people as you can. Put on bright lights and open the windows to bring in sunlight. It might help a little bit. Spend as much time as possible with your mom. She shouldn't be left alone too much in this state. It may take awhile for medicine to kick in and for her to get the right dosage. Sending you a hug. Kim
 
I don't think any of us can fully empathize with someone whose parent died of ALS and now faces the same death, unless we are such a person. It is more than depression or fear of death - it is the knowledge of a particular kind of death and what it means for the last years of life. In some ways, antidepressants and anxiolytics could prolong coming to terms (or deciding not to) with her disease. If she wants them, of course she should have them. But I would not rush to judgment on her behalf, either way. She may decide not to fight or she may decide to fight -- I am not sure "fight" really applies here but that is another post -- anyway, I agree that listening to whatever she chooses to share and providing other channels such as the therapist if she thinks it helps are probably the most useful things to do.

Please, let's not stigmatize people who're "suicidal." It may seem "horrible" to some, but others on this forum have chosen to die at a place and time of their choosing and that is a choice that was/is ours/theirs/yours to make.
 
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