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dmarino Asked August 2015

My friend is far away, dying of ALS. I am at a loss as to what to say to him. Any suggestions?

We communicate via messaging on Facebook.

EXPERT Carol Bradley Bursack, CDSGF Aug 2015
If possible, I'd let your friend lead the way. The responses here were terrific - keep it light unless she wants to talk about dying. Much depends on your friend's personality and how close you are. Most people hate to feel "pitied" but appreciate empathy.

It's hard to communicate by phone when someone is this ill, but again, as was suggested, talking about good memories rarely fails. But leave an opening in case she wants to say goodbye. There are people who don't like the fact that people won't talk about death.

It's such an individual matter that you'll have to rely on your instincts and how your friend reacts to what you say. The main thing to remember is that she'll know that you care because you keep trying. You really can't go too wrong if you let your love come through.

Also, write notes. Cheerful memories that can be re-read. It's not as exhausting to read a note or have it read to you as it is to keep up a phone conversation. Notes can be saved and savored. Fun note cards would add to the experience.

Please update us on how your friend - and you - are doing.
Carol

geewiz Aug 2015
I traveled the ALS road with a friend for 7 years. She was single, no children, no sibs. If your friend can still speak on the phone an occasional call would be terrific. My friend just wanted to know that others were there for her. Talk about the times you shared and how you value the friendship and the good times. My friend and I would talk about our trips, etc. If you have photos of the two of you post them and recall a memory of that photo. Take your friend on a trip 'down memory lane'. Help him to remember the good times. Typically, ALS patients don't want to be thought of as 'the disease'. Make your friend be as normal as possible. If he follows sports, talk about the latest score. If has kids, ask how they are doing. Is there any possibility you can get in a visit? It would give him something to look forward to and look back on! Good luck. This is a terrible disease.

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Windyridge Aug 2015
I do some hospice companionship volunteering. Most people don't want to talk about their illness or dying but some are comfortable with it. I never initiate such disscusions but if it comes up I will talk about it with them as honestly as I can. Patients may ask about my religious beliefs. I'm honest with them, I'm not religious but I may say that I'm glad they have such strong beliefs as it seems to give them peace in their struggle. You can't Bull S... Someone who's dying.

Take advantage of Facebook. It's great that he can still communicate this way. Follow his lead, talk about what he wants. Old times, old friends and adventures. And talk about regrets and mistakes but remind him everyone has the shoulda, coulda, woulda, feelings.

Let him know he is loved and will be missed and that we all know he did the best he could, that he did more good than harm in this life. May or may not be entirely true in some cases but go with it as much as possible.

And I agree with Geewhiz. Could you make strip to see him? If he doesn't have many people in his life that could be such a huge gift for him. Good luck. Let us know how it goes.

LifeisGood Aug 2015
I know this sounds simple, but being a retired Hospice Social Worker, sometimes when visiting patients, I would just ask what they wanted to talk about today. It works sometimes. good luck and we are all praying for you during this most difficult time.

foxxmolder Aug 2015
I was at the bedside of my dying husband in hospice 24/7 (for 8 days). He was 38. So many friends and family came through that room to say good bye. Many of them pulled me aside before visiting him, crying and asking me what they "should say". I had no idea so I immediately went to the nursing staff and asked. Their answer,
"it would help the process so much for him if you let him know in what ways he has made a difference in your life."

GardenArtist Aug 2015
I'm sure your friend appreciates your support more than he can express. ALS is such a devastating, insidious disease.

I honestly don't know what to say to someone dying of this disease, although Geewhiz makes some good suggestions. I would generally try to keep the conversation light and focused on pleasant thoughts, but if/when he does want to discuss his fears, anxieties and thoughts, validate them, compliment him on his courage and just let him know you're there for him. I would think that just having someone to communicate with would be a valuable support tool for someone who must feel as though he's very alone in battling this disease.

I'm wondering if any ALS or muscular degenerative societies have suggestions on their websites?

Dad_Was_Robbed Aug 2015
If you're not familiar with the dying process, it would first be very beneficial if you learn about it. Next, just have normal conversations with your friend as you would if they were not dying. You really don't want to talk about the bad stuff unless they bring it up in a conversation. I strongly agree with anyone who would say to let your friend take the lead in the conversation about the bad stuff, because this is exactly what I would do. Just let them share what they want to and don't pressure them. Just be respectful as you always have, and just be there for them when they need you when it's actually possible for you to be there. Just treat them as any other normal person, and definitely pray for them. I know that some people may not want to hear the next thing that I have to say, but this really is the truth that we will all one day have to face. Before your friend goes, you definitely want to see where they are spiritually because when they die they will stand before our Maker. Definitely make sure they know Jesus if they want to live forever in heaven. I'm sure you'll want to see your friend again on the other side, and Jesus is the only way into heaven. Don't wait because no one is promised tomorrow. One day we will all go through this very same journey and we will all end up on the other side in one place or the other, God promises that. Anytime someone is dying, you definitely want to see where they are spiritually because we all have a spirit that will live on somewhere. I don't know how close your friend is to the end, but now is the time for salvation if they don't already have it. We will all one day return to dust, that is that. However, we can leave this life with the assurance of going to heaven and seeing our loved ones again. The earthly life may end, but that's not the end because there is a spirit realm. Anyone who's had an NDE will even tell you there is a spirit realm and that we do have a maker whose name is God, and we will all one day stand before him when we die. This is an end-of-life fact and many people either fear death for this very reason or they become uncertain of the unknown. The unknown is what they don't know, and it's up to those who do know to share the truth and relieve any fears and uncertainties that our dying loved ones have. Where is fear and uncertainty for a reason because it's within us all to know the truth though it be buried in our subconsciousness. The truth is the truth that we will all face when we die. I know that even my surrogate dad will one day leave this life and even he will stand before God when he dies. No one wants to lose a loved one, but you can rest assured that you will see them again if they go to heaven. Even if you ever had a dream about a departed loved one, that's proof right there that there's a spirit world. I've had such a dream, and that's called a lucid dream as it's called. Lucid dreams are very common, so they're not new or unusual. Depending on how close you are with your friend will depend on whether or not you yourself may have the same dream when your friend is gone. We will all at some point lose a loved one sometime, and the best way we can prepare is to know the truth and prepare our hearts ahead of time. The only thing we can do now is that when we know someone is dying, we really need to tie up any loose ends when possible. This will help give us the best closure possible, so being for paired to make any confessions and apologies as hard as it may be. Seek forgiveness for any mistakes made during your relationship. If you ever borrowed anything that you've not yet returned, quickly return it. Let that friend know that you love and care about them because they really need to hear it, especially now near the end. In case your friend does not go to heaven, the expression of love will be the last kindness they ever experience. If they go to heaven, they can experience kindness again along with the most love anyone can ever experience. Whatever happens, just be sure to shower your friend with as much love and kindness as absolutely possible. You really don't want to neglect them, especially now. No one should die alone, especially without the expression of loving kindness.

Globetrotter50 Aug 2015
A very good question! I can appreciate the awkwardness you feel; it's like that dead elephant in the middle of the room that everyone is aware of but nobody mentions because it is too unpleasant a topic. It strains communication to the point where one would prefer to avoid the person who is dying altogether. We fear upsetting the person and we fear potential anger and rejection by the person if we say the wrong thing. So we rather not say anything at all. However, news of their impending death has an effect on the survivor as well.

Some very good advice here about normalizing the conversations yet providing an opportunity to discuss difficult feelings and unpleasant realities. My suggestion would be to continue to connect with your friend and not worry about communication errors, as I believe the heaviest burden faced by people who are dying (and people who are grieving) is the isolation imposed on them by survivors who do not know what to say and stay away. I commend you on your compassion and desire to make this right despite feeling a little out of your depth right now.

waddle1 Aug 2015
You've gotten some very good advice here. After going thru the expected but sudden dying process of my husband two years ago...I have some advise of what I would try NOT to do. Don't change! I would try to have a normal relationship with your friend. That may sound so simple (yet difficult)...but from experience, I regret how a diagnosis changed the relationship with my dying husband. It wasn't intentional or preventable as he went quicker than anticipated. Keep your conversations as they were, as they would have been prior to the diagnosis or dying process. Secondly, don't wait. With terminal illnesses it can often be an estimation of how much time they've got, not an exact science of determining a timeframe. Send cards, letters and communicate as normal as possible...as he will appreciate hearing from the friend he knows. (Not the one that may be created via shock & sadness.) I wish your friend and you...peace.

cattgoodness Aug 2015
I love you and I am here

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