Feeling hopeless

[Balexander]

Hi,
Sorry for such a downer post, but need to tell someone. I'm so sad. I don't want to go on anymore like this. I can no longer move my arms, swallow, talk, or stand to transfer.

I'm tired of being a burden to my family. I know I could end it by not taking any more formula through the feeding tube (been using it seven months now).

But I'm selfish and weak and am scared to go through starving to death. My breathing is weakening pretty fast, but still only need a bipap at night. So that way out is still a little far off. Is it painful to starve to death?
Thanks for listening.
Bryan

 

[kmendsley]

Bryan,
I am so sorry you are feeling this way. But I can assure you that myself and many other PALS and CALS would agree that starving yourself is not the answer! For one, it is not pleasant...your stomach shrinks and it takes longer than you may think...my grandmother tried this....for months and months...she ended up dying because of an infection from a cut on her leg. Her body just kept feeding off of her muscles...and metabolism slowed way down to accomodate for the loss of food. I don't know how much you weigh, but my grandma was 43 pounds when she died. (And again she did not die from starvation) She looked like she had been in a refugee camp. Very sad, and as a caregiver of her(she had Emphasemia and stomach cancer by the way) it was hard to see her 'give up' on life.

It is okay to be sad and have bad days...maybe you can talk to a family member about this or friend...perhaps journal it. It will help you 'get it out' so that it is just not swimming around your head brewing, per say, to the point that it sounds like a possibility. My prayers are with you dear friend. Please hang in there.

 

[Ms. Pie]

I'm so sorry you are down. I would think that starving to death would be terrible. I know you are loved. Please talk to your loved ones about this Dear. I'll bet they're not ready to let you go. My husband says he wants to do whatever it takes to keep me around as long as possible. I'm not so sure I want that but don't really know yet. I understand where you're coming from but my advice to you is to do whatever you can to stay strong. It will take it's own course in due time. Please don't hurry it.

 

[laurel]

Bryan I am so sorry about what ALS has done to you and is continuing to do. I am a retired RN and have seen infants and adults starve to death due to various medical conditions. Your question asking whether it is painful is not easy. If you mean no fluids or nutrients, it would be uncomfortable dying that way if you are not suffering cognitive impairment ie. being awake and aware. There would be unquenchable thirst and restlessness, and often stomach discomfort due to stomach acid. Also, it would be unpredictable how long you would live for this unpleasant process. If fluids such as water were accepted, it would be less unpleasant but still the process could drag on for up to a month or more. Bryan from my life experience I would say the starvation option isn't a good one unless a person is in a coma and has no awareness of what is happening. Can you bring in hospice to have discussions about what your wishes are for not prolonging your life, but keeping you very comfortable? I think some medication for depression/and or anxiety could take the edge off some of the very real and raw feelings that you are experiencing. I hope that you can bring in someone to confide in who can give you some solace and answers.
Laurel

 

[Balexander]

Thank you all for such wonderful answers. You have made a difference in my day!

I have recently started hospice and made the decision to not get a trache, resuscitate, etc. I've been feeling guilty for having the feeding tube. Thinking that that burden would have been gone long ago. But I will press on. Sounds like starving is not an option, for me and those that have to watch me die.

Thanks for being there,
Bryan

 

[Ms. Pie]

I'm glad you can see straight Dear. We're all of us in this together. PALS and them that love us. I think talking to hospice is a good decision. {{{{BIG HUGS}}}} I'll be thinking of you and yours.

 

[susanf]

Bryan,
I'm sorry that your sad but I'm sure your family wants you around, loves you and doesn't think your a burden. Talk to your family about your wishes. Get with ALSA for alternative forms to communicate.
You can always come here and talk to us. We're all in this together and your not alone.
Susan

 

[EGBAR]

Bryan I understand how you are feeling. I am not as advanced as your are yet physically, however I think we are all advanced mentally to the same point once we have this diagnosis. I don't want to be a burden to my family either, however I also don't want to let them down. I don't know what to pray for anymore, but I do know that I can take each and every day one at a time and see what comes. Dont let one bad day make decisions for you. We are here if you need to talk.

 

[Peter12155]

Hello Bryan,

I can understand every emotion behind those words you have expressed. Let's try to take it one day at a time. Make the best of it however you can. Bryan, we are all in this together. Like you, I am struggling with it too. Be brave my friend!

 

[asantiago]

Wanting to live is NOT selfish and when you love someone, caring for them is not a burden. I would have cared for my mom until the end of time if it would have kept her here with me and I'm sure your family wants you to be with them for as long as possible. I hate what this disease does to everyone affected and hate that you are going through such an inner turmoil. I definitely agree you should seek some medication for anti-anxiety which will take the edge off some of these worries and hopefully allow you to find something in life still worth enjoying.

Hugs!

 

[Ms. Pie]

I've discovered that being strong and faking it when I'm weak causes anyone that cares about and for me to be strong. It's amazing how that works! My Mom says, "If you're alright, I'm alright!" That said, I don't consider shedding tears now and then a sign of weakness. Sometimes we do need to share our tears.

I continue to send you my best wishes and spare strength in hopes it helps you get through this! I pray you're doing good and this beautiful morning finds you nice and comfy.

Hugs,

Marta

 

[Balexander]

Thanks everyone, I'm doing much better now due to your support.

 

[rcharlton]

Bryan

You are not selfish or weak.

If living one day at a time doesn't work try living one hour at a time.

Is there anything you enjoy doing?

For me reading is a great escape. There are a number of free reading programs for your computer (Amazon, Barnes Noble Kobo) with thousands of titles also available for free.

Another guilty pleasure of mine is reading comic books on my computer. Groups of people have gotten together and scanned pretty much every comic ever made dating back to the 1930s. Superman, Batman, Flash, Spiderman, Archie, Richie Rich etc. and comic strips like Peanuts. Makes me feel like a kid again. The computer comic viewer is very easy to operate. I use a trackpad operated by my big toe.

If anyone is interested about comics pm me.

Another great escape is video games. Hidden object games are great. Requires minimal mouse input and no time limit - xxxxxxx has a great selection of games. Each game comes with a one hour free trial and costs about $6.99 to purchase.

Watching comedy bits on youtube is also fun.

xxxxxx has a free viewer for computers and carries a whole bunch of magazine titles at cheap subscription prices.

If you can operate a computer you can access all of the above.

Good luck.

 

[susanf]

Bryan,
I don't know if this helps but if my husband had this I would take care of him peg, vent and all. I would not want him to give up no matter what and it wouldn't be a burden at all.
I hope your feeling better.
Susan

 

[Miss]

Bryan,

Encourage your wife to check in with other caregivers, either here or locally. It is amazing how much strength we all get from each other.

When my husband was first diagnosed, he was determined that he would end it as soon as he lost the use of his hands. (He had left hand limb onset). Then it was his legs, then his voice, then the ability to swallow whatever he wanted. As of May, he no longer could walk, talk or use his hands. He has been on soft foods only for almost three months. Two weeks ago, he sat me down to explain that he wanted to be trached and vented. He realized that he still enjoyed life. He enjoyed his friends, watching sports, the Internet and mostly, he enjoyed watching his children's lives unfold (ages 17 and 19). After a weekend of visiting friends at the local tavern, company, capped off by watching his beloved Cowboys on Sunday with his twin, Terry died peacefully on Monday morning. No pain, no fear, just peace.

You never know what you can endure and where you can find until you're there. . We made it a point to find one blessing each day. Sometimes they were obvious. Some days we had to really stretch ourselves! Terry certainly had bad days - many, many of them. In the end, he found all of the joy life had to offer. I hope you can, too.