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SanDiegoSue

Active member
Joined
Mar 14, 2017
Messages
40
Reason
PALS
Diagnosis
03/2017
Country
US
State
Ca
City
San Diego
To CALS: when (in the progression of the disease) and why did your loved one decide on suicide? Or not

To PALS: why did you decide against suicide?

I realize this is a horrible subject, but I don't know who to talk to about this. I am a 70-year-old newly diagnosed PALS with bulbar onset. Right now, my speech is slow and slurred. My left hand and arm have lost muscle and are weak. All I can think about is the horror of my young grandchildren seeing me in the end stages.
 
I think there is a very significant difference between suicide and letting the disease take its course.

In my mind, declining treatments (feeding tube, bipap, vent, etc.) is not suicide.

Explicitly taking your own life is suicide.

For me, suicide is out of the question. I have deep moral and religious reasons for that position. For that reason, I would encourage you to immediately call your local suicide hotline if you are seriously thinking about suicide.

I plan to stick around as long as I can because I still think I have a lot to offer. While I am no longer able to be productive by some of society's standards, I think I can still make a difference in the world -- one person at a time.

Who knows how I may influence the lives of my great nieces, my nephews and nieces, my siblings, my friends, and the many strangers I have met since diagnosis.

Though I use a wheelchair, I am still able to greet people at church and make the many visitors to the resort area in which I live feel welcome. I have developed new and deep friendships since diagnosis.

I have picked up new hobbies since I was diagnosed and adapted my approach to my old hobbies so I can still enjoy some. Who knew that learning about wheelchairs could be so interesting?

I contribute to these forums, attempting to convey the knowledge I have gained and offer a few words of encouragement. There is a wonderful community here ready to support you, as you have already discovered. As you progress in the disease, you will lean things that you will in turn be able to share with other newcomers.

There is so much living left for me to do. I plan to continue to get up every day and get the most out of that day. I recognize that the most not be very much on some of those days, but I still strive for that most.

I hope you are able to find ways to add a richness to your life that you never could have imagined before diagnosis.

As for grandkids, I have found children to be incredibly resilient and the most wonderful folks to be around. They have a natural curiosity and innocence that prods them to approach me and ask questions about why I am in a wheelchair or using some other adaptive equipment. There is nothing better than being in a biski in line at a ski lift with a ski lesson full of inquisitive children.

Perhaps you can find some things to think about in what I have written here. I sincerely mean what I have written. If there is any way I can be of help to you, please don't hesitate to let me know.

Steve
 
Hi Sue, my PALS has not spoken to me about whether he has thought about suicide or not during his 3 1/2 years of living with this disease. What I have observed in him is periods of depression that follow losses of what he can do but after these bad periods I see him readjust and find enjoyment in what he can do and enjoying the company of the people he loves. I truly believe he focuses on the moment and finds quality of life in his day. I'm sure the average person looking at him and his life would find this very hard to believe. I noticed you were just diagnosed this month so you must be in horrible shock with horrible thoughts running through your mind of the future. May I encourage you to give yourself more time to process this diagnosis before you consider this question? You may feel very differently a month or two from now. You are in my thoughts and prayers, Kate
 
I agree with Steve, and Kate one hundred percent. Not because of religious beliefs but because as they say " I anyt no quitter "
Al
 
I too have never considered it.

I understand some PALS do but I can't imagine it. You can definitely work to find joy and value in your life.

Steve is right about kids. Don't use sparing grandkids as a reason. It is not one. The children in my family have witnessed progression and death of multiple family members ( I of course wish they had not) They universally mourned their parent/ grandparent/ aunt/ uncle even after a long illness and wished them back. To lose the relative prematurely would have been infinitely worse
 
Funny I would be one on here responding to someone else as I am always the one inquiring about this or that. I really like swalkers response. Differences between suicide and letting the disease take its course. I am living with a PALS that so far has refused any assistance, i.e. feeding tube, speech therapy, cane, wheelchair etc. And from what I gather, and what he has shared upon return from clinic the only take away I have heard is that he inquired about hospice. This says, to me, so far, I believe his choice is to let the disease take its course. In the mean time he is a fighter and will be doing just that. Trying to stay one step ahead and push himself to stay strong and capable. I know he is frowns upon suicide so I am very confident this is his choice. But on the flip side I have read beautiful choices people have made. One women in Calf. decided to have a weekend long celebration with all her friends and family. At the end she went to a mountain top and laid down and was administered medication to let her drift off. She had spent the weekend laughing, watching movies, visiting and embracing all those around her and saying goodbyes. Her choice and was done with grace and dignity. So, I have mixed feelings. And not personally being the one going through it, how a person handles it is their choice. No one should be condemned for how they choose to handle this disease. It is such a personal choice and no one can tell you but yourself. Thank you for sharing your deepest darkest thoughts...as we all have them and all wonder and question this beast of a disease and just how to contend with it. Thank you
 
This is a topic I thought about obsessively in the beginning. I researched it thoroughly. I did not want to be such a huge burden for or my family. And I was terrified of losing independence and all these certain losses that were in the store.

Somewhere along the line I was able to get an a more peaceful place, acceptance , taking one minute at a time. It is what it is, as one of all of our loved members, Max, use to drill. I became determined to make the most of my limited time left, and I am so very glad I did.

I will learned to appreciate the wonder of small things, like the birds singing, and each new sunrise. I've been here for the birth of two grand children, the oldest was born just after diagnosis and turns three soon. My relationship with friends and family have deepened and bring great joy. The trips taken and memories m made are priceless. I poured myself and to raising awareness, participating in trials, and doing what I can to help others. I've become a Great listener , something that I can do from this damn Wheelchair. So, it has not been easy, but I am so grateful for the time I've been given these past three years after diagnosis. It is possible to live well with this disease, so the choice was right for me. I do not think there is a wrong choice, it is the most personal decision.

Sending you lots of hugs as you wrestle with your thoughts,most of us have been there.

There is a good read on here called Quantity or a quality that you may want to search for
 
About kids, my little grandson has learned how to give me drinks, and assist with bedtime routine. We call him, pillow man. I think it has made him a very thoughtful, compassionate little guy.
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Sue,
I infer that you're not interested in suicide at this moment, but to control when you pass on in the future, so you don't have to live past the time you think it's time to go.

That is a more common option than this thread would suggest (and there are many other threads to read-- don't search on "suicide" but rather on "morphine"). It is the choice my husband and many others here made, and others I know are planning just that. It is a combination of recognizing when the disease has the upper hand, while not believing that it needs to take its "natural course" to the very end.

The key is to have your wishes documented legally in advance, to have spoken clearly with someone who is willing and capable of implementing those wishes, and to have made peace with those closest to you, whether they are aware/part of the plan or not, before you may be less able to do so.

Best,
Laurie
 
Thank you Steve. You me much to think about. I am not religious, so I can't consider that. But you raise other important points.
Sue
 
Kate, I deeply appreciate your comments and thoughts. Yes, I am newly diagnosed and in shock. I have gone from the denial stage to anger, at this point. But, I agree that I need to give it some time. I am so afraid...
 
Nikki, Joy and value in my life....a wonderful goal, but right now, I don't know how to get there.
 
Lavinia, I really appreciate your comments about your husband. I wish you both love and luck on the journey.
 
I personally feel that any decision about end of life should be undertaken calmly and rationally. No one can be in that state when newly diagnosed. I respect everyone's choices. Everyone here has good things to say, and all points of view should be considered.

You will look know later what is right for you, but now just let that shock wear off and focs on the goodin living I would say.
 
AZgirl, your words in the first paragraph are me. It helps me so much to hear from you and where you moved from the beginning. I obviously need more processing time and hope that I can reach the place you've found yourself. Sue
 
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