Visiting a friend with als for the first time

[dlfoster]

Hi Everyone,
I posted back in March asking questions as to how best help my friend with ALS. We live 1000s of miles away from each other, but I wanted to let her know that my thoughts and prayers were always with her. I received some great replies and ideas to let her know I'm thinking of her.
I am going to visit her for the first time since she was diagnosed (Sept 2014) and not really sure what to expect. She is still living in her home and has great support from her family. I know she has caregivers 24/7 now, has lost a lot of her ability to speak, can only type with one hand and is using a walker.
I guess I am just looking for some comments as I am afraid I will let her down and cry the first time I see her and I don't want her worrying about me and my feelings. I want to be uplifting and help her, not make her feel worse. I want our visit to be great!
I guess I'm just looking for some comments and/or suggestions of what we might be able to do on my visit to make it great. Another concern of mine is I'm not going to be able to understand what she says and I don't want to keep asking her to repeat herself. I know she gets tired quickly. I don't want to be a burden during my visit (3 days) I want to make it fun for her.
Any comments would be greatly appreciated. My prayers are with you always.
Regards,
Deborah

 

[Tractor Boy]

Deborah, for one thing, when talking with your friend, always pay 110% attention to her face while she's trying to talk. Keep any background noise to a minimum and have good eye contact. Just pay FULL attention to what she's saying and you'll catch on quickly. If you're unsure what she said, repeat what you thought she meant and she will clarify if necessary. It means a LOT when you understand us the first time. Best of luck and have a great visit! TB

 

[dlfoster]

Great suggestions, thanks so much for taking the time to respond.

 

[Nikki J]

If she uses a text to speech remember when she is typing it is like she is already talking so try not to talk and interrupt her. On the other hand sometimes if it is very hard to type she MIGHT appreciate you sitting where you can read it as she goes if you can complete her thought early. That is a definitely ask first as she might hate it. Since she has carers there may not be a lot of tasks but ask her if there is something special that you can do for or with her. Is there any activity you used to share that you can do even if it is in a modified form. A favorite dvd? Doing her nails? The biggest gift I think is to feel normal even for a minute. Try to treat her the way you always have. But it is ok to say once this stinks and I hate this for you if the moment seems right. You are a great friend and she will appreciate this more than you know

 

[dlfoster]

Thank you Nikki, I hadn't thought of ideas so your comments help a lot. I have read your replies to many people on this forum and I must say, you are very thoughtful, gracious and patient in all your comments. Your knowledge has been helpful to many people, myself included. I have been reading the forum so I can be familiar with her disease and be of some help to my friend. Thanks again for your reply. I'm packing some DVDs and nail polish right now. My prayers are with you.

Regards,
Deborah

 

[lgelb]

Deborah,
It's normal to cry, so roll with it. When you see her for the first time, hug her, let yourself tear up and tell her how much you've missed her. Then dry your eyes and talk, with all the great suggestions below. And don't worry about being uplifting. Your presence is bound to be just that. She's had what, eight months, to live with it, and it sounds like, some significant losses. Your being with her is a win. And Nikki is right, you can ask her straight out if she wants you to complete sentences or what works best. Some people are better at understanding garbled speech than others, and she will understand either way.

 

[Green Queen]

Deborah, I'm thrilled you are getting to see your friend. Not sure how old you both are, but I love the fact that you are super excited about the trip...the kind of friendship that can continue to grow through thick and thin.
I absolutely agree with everyone here, but I'd like to add something from my perspective.
All my family and friends are very brave, don't cry in front of me, don't want to upset me apparently. But one of my dear friends, when I first saw her after things got quite bad, cried heaps. So, we just stood there, hugging, both letting the tears flow. It's nice that people put on a brave face, but I was overwhelmed with her honest care and concern for me. And to be able to cry with her was just what I needed and still cry with her, via texts, phone calls and when we meet. She is the one person I truly let it all out with,
You know your friend better than me obviously, but tears are not always a bad thing.
God bless, Janelle x

 

[Gembead]

It's ok to show our real emotions, don't put on a brave face, be real.
Love Gem

 

[sadiemae]

Hi, I don't come here much anymore, but a quick story. My husbands childhood best friend came to visit him in Nov 2012. They hadn't seen each other in over 25 years. It was a great visit. My husband died in Feb 2014. Flash forward to May 2015. His friend who visited was DX with ALS.

 

[Green Queen]

Sadie, wow. I actually don't know what to say, but I'm glad you shared.
God bless, Janelle x

 

[Green Queen]

Deborah, one of my dearest friends came to town for the weekend. I haven't seen her since this happened. She cried a bit when she saw me hobble around trying to do things, I was touched.
She also shaved my legs! How awesome! She wanted to do something for me...
She also bought me a necklace at the local markets which says "today I choose to be awesome "
Mmmmmm....she knows me well!
I hope your trip was rewarding for both of you.
God bless, Janelle x

 

[Jeanau]

Sounds like a wonderful visit Janelle!

 

[DreamsEnd]

You might also tease her as you always did assuming you did tease each other. I agree with let it flow, she might well appreciate that and your being yourself. Massages, rubbing lotion on her legs and limbs, ask her. My PALS would want to play cars so she'll tell you. Maybe she'll tell you things she's told no one else. An aside, I often have to ask my PALS to repeat as his volume is so slow and slurry. He doesn't mind and ask your friend if it tires her if you ask.
But know your visit means the world to her!

Bless you,
Sherry