Friend with ALS -- asking for some help on this

[Rachel]

I have a longtime friend who is in her 3rd year of ALS. I along with many other friends visit regularly. Now this is hard to admit, but I find it has always been hard for me to be around her in this condition, but over the last few months it has gotten really hard.

Of course, for HER it is unimaginably hard!

After a visit I get panic attacks and severe headaches---last time I was so upset I could not get out of bed for a day.

I feel like I do a good job of keeping it together while I am with her, but as soon as I leave I fall apart. I need to figure out a way to cope a bit better so that I don't just stop visiting.

If anyone has any ideas for me I would be grateful. I feel terrible about this and don't think I don't know that this comes off as incredibly selfish on my part.

[Radicchio]

I don't have any words of wisdom, but I can say I understand. I, too, have a friend with ALS and it's getting progressively harder to see her getting progressively more impaired. I can barely understand her when she speaks, and I hate to keep asking her to repeat herself. It's heartbreaking to see it and be helpless to do anything---other than continue to visit and provide practical help as needed. If you can't keep visiting, it would be a shame, but I certainly understand that you don't want to fall apart in front of her.

[Valley]

I myself was diagnosed with ALS last New Year's Eve. It is a devastating disease for everyone involved. I'm already in a wheelchair and it's becoming more and more difficult for me to speak clearly. Both being a patient and being a friend of a patient is horrible. I think that it's difficult to watch someone with ALS because it makes you realize how random the disease really is...and that could easily be you and not your friend. I would hope that you find ways to stay in touch if you're too uncomfortable being around her. Send cards...getting cards in the mail is a highlight of my day. If she can still eat and drink....drop off some homemade soup, buy her some cookies, bring her a bottle of wine.If you practice a faith, include her in your prayers. It is a very sad disease, and I wake up every day knowing that I will never get better. But, I am scrappy and my faith is strong. I just need to know that my friends will hang in there someway, somehow.

[Float On]

Rachel, I think mentally you are already grieving for your friend and your own loss (to come). I'm glad Valley jumped into the discussion. What she said is valuable. Be there. I know in my own case, we've had 3 friends over the last 5 years pass away from ALS and just found out another person we know received his diagnosis 3 weeks ago. We've learned to be real in word and deed, to say everything we ever wanted to say, and to love fully. We don't try to put on a happy face and act like everything is ok. That would give me symptoms like you've had. We just be real. We get angry. We get sad. We've done a lot of crying and a lot of laughing. We tried really hard to do fun things when we could and normal things.

[bae]

In my day/night job, I encounter people in truly horrible situations with some frequency. I have to be upbeat and supportive and problem-solving while I am with them.

However, once done with the call, it's hard. Our department has a wide variety of counseling services, and some mandatory post-call reviews amongst those involved in particularly difficult calls, which I have found helps *hugely* in dealing with my own personal reaction to these events.

So I guess my best general advice is - don't go it alone, don't try to be heroic/stoic about it, find some folks to talk with who understand the sorts of things you are dealing with. Or burnout/depression is a real risk.

[Miss Cellane]

Much though I don't usually agree with bae, I agree that seeing a therapist for a few sessions to learn some coping skills on how to deal with this might help.

And how lucky your friend is that you visit! So many people find that their friends drop away if they get ill. Hard though these visits are for you, I'm sure they mean a great deal to your friend.

I don't know if this would help or not, so I'm just throwing the suggestion out there. My nephew was born with several severe medical issues. Even after he came home from the hospital after 6 months, he was on a ventilator, had home nurses, all sorts of things. Visiting him was difficult, knowing just how fragile he was. There were several medical crises his first two years that should have killed him.

I started taking a ball of yarn and a crochet hook along when I visited, and made little hats for preemie babies, and later, prayer shawls for women with breast cancer after a friend was diagnosed with it. It gave me something to do on the visits, and it was a way of helping *someone*. I couldn't help my nephew, but I could do something for other babies or women in need. It helped give a purpose to my visits, somehow.

[mschrisgo2]

I don't know where you live, of course, but your local hospital might have support classes or groups for families and friends ... I know here in the bay area almost all of the hospitals do, for various illnesses and conditions.

Three years ago my father had a severe heart attack and "recovered" from the open heart surgery, but never really "recovered" and died 61 days later. I went to a couple of classes for families and friends of people dealing with heart disease. Just being in the room with other people in similar situations was very helpful for me; I don't feel so alone and strange anymore, and we exchanged phone numbers so we could call each other later. It actually was a real lifeline for me, as my siblings were all pretty much in denial and could not give or receive support. Just a thought.

[sweetana3]

Your local hospice organizations also will be able to forward you to support groups for family and friends.

[Tammy]

The first time in my life with these emotions was at age 35 in nursing school. I was fine during clinicals, but then struggled afterward on my hour long drive home. Once I got home my 3 kids needed me so that distraction helped.

The stories of my patients rolled through me mind and I felt emotionally empty and drained. The patients with chronic and progressive diseases were the hardest. I still remember stories and particular hospital rooms from almost 20 years ago. I spent a whole shift with a woman, cleaning her body, moistening her mouth, trying to make her comfortable - who died the next day.

These situations where we are present with people who are dying, whether that day, or slowly over months, bring us face to face with our own mortality. We all mentally acknowledge our own mortality. When we face the emotion of it, that's another thing altogether.

Although it's hard, I would encourage you to continue a relationship with your friend. Visits can be short. Good ideas for coping are given above. My encouragement for you is to realize the gift for you in this situation - and to embrace it rather than run from it. The most difficult things I've been through have made me a more compassionate and complete person. It gets better and it's worth it.

[Float On]

One of our forum members, Fawn, wrote "A Holy Errand" it's free right now on kindle unlimited on Amazon. It's a good read and has some great insight in visiting those in hospice care. I bought 2 copies when it came out, one for me and one for my church library. http://www.amazon.com/Holy-Errand-Fawn-Hoener-ebook/dp/B009TGLO0Q/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1434814745&sr=1-1&keywords=a+holy+errand

[Rachel]

I truly appreciate each of these responses. You each have given something to think about that could be of real practical help. Valley, I'm sorry you are in this situation, I esp. appreciate your voice in this discussion.

[pcooley]

My brother died from ALS in 2004. I did not get to spend much time with him, since we lived most of a continent apart. It is heartbreaking, and I never new what to say when I did get to spend time with him, but if I could have, I would have moved to be there with him every day. My sister-in-law is a saint. I'm sorry I don't have any ideas for you. I just know how hard it is, but it's important that you're there. I echo the recommendation that you find someone in hospice work, or a counselor your could talk to.