Flying and travelling

[jamorel]

Joy flew up from Mexico in July and she stayed with me a few days but I had/have some concerns. I don't think she should be travelling alone. Is there a time when she should not fly or when the airlines will deny her boarding with or without assistance?
It is hard because Joy believes that she can do almost all of the things she did a year ago, but she can no longer walk without assistance, and only a few steps, and her ability to speak is going. She blacked out while on this visit, and of course the doctors in emerg had no explanation as they know very little about the complications of ALS at the hospital where she was at.
I just don't know what to say if I should say anything as I am afraid that any discussion of her limitations will either anger her, or she will ignore me (which is more likely).

 

[BarryG]

Jodi, I am sorry about Joy's progression, it is so hard to see anyone going through this. I think that she should not be travelling alone but I don't know how to go about telling her so. It is not safe for her and it is not fair to those who might have to take care of her if she does have a problem. I know that it has been hard for me to come to grips with the fact that I need a sitter or at least someone who knows what is up with me. Even with help airports and all of the security measures in place now are more than I can even think of.

Good luck, is there anyone else who can help you convince her?

 

[jamorel]

Its very hard. We have five levels in this house and although she refused to let my husband help her up the stairs, she came close to collapsing when I assisted her. I realized the first time that if she did go, we would both go as I couldnt support her. I am trying not to push my feelings on her decisions, such as moving far away (Mexico of all places) and insisting on travelling, but I think that it is getting to a point where she is really going to hurt herself. I guess I just wring my hands. I can talk to the rest of the family, but I think we are all in the same boat: how do we bring this reality to her without crushing her hope. I think that is the big thing, Barry, she is holding on to hope and part of that it refusing to accept her limitations. We are all holding on to hope. I hate ALS.

 

[sadiemae]

Hi, I started a thread "A fall and a question" a few weeks ago after my husband fell hard and got a lot of good answers and suggestions. It was under the CALS thread I think.https://www.alsforums.com/forum/als-mnd-caregiver-support-group/12497-fall-question.html WHOO HOO I figured out how to post a link. Will wonders never cease!

 

[BarryG]

And that is the thing Jodi, it won't be just her that is hurt if she does fall. Someone will at least have to rescue her, and it could be someone who tries to catch her. Unfortunately for a lot of us (me included) it seems like that there has to be an "incident" before we realize that we are no longer capable of being completely independant.

I can understand why Joy would want to live in Mexico, I mean who wouldn't want to live in a tropical setting rather than a place with 8 months of winter and 4 months of poor sledding?I would love it too but my non Spanish speech is even worse than my non English.

I hope that she will come to realize that she is no longer the person she used to be. It kills me to admit it but I know I'm not.

 

[jamorel]

You are too funny, Barry! "4 months of poor sledding" - so aptly put! She has fallen and in Mexico she had to get stitches and had a mild concussion. I have spoken to her about it needing family and friends nearby for support. Thank you Lori, I am going to read your thread. I know Joy plans to fly back in December and stay in hotels while she is here... and I think I need to talk to her husband about some of these plans and where he is at with it. I know he is doing what ever she wants and not pressuring her, but I am afraid it will not go well here soon.
Barry, I told you before, I am sure I mentioned that I wanted to hear your nonspanish... it has to be better than mine All I can do is say hello and can I have three beer. Perhaps that's all anyone really needs?

 

[jamorel]

I read your thread, Lori, and it sounds very similar. I am not the the #1 caregiver, her husband is, but I can see where he is coming to the end of his rope. Joy told me as much so I know that my experience with her in the few days she was here is what he is coping with every day, and it is hard. Hard to try to do whats best, to change roles because of what ALS determines life to be. Anyway, I am relieved to see that this is not unusual, I just have to figure out the best way to approach it. I know "telling her" wont work, as I have been quite frank with her on a number of things even before she had ALS and I know that if she doesnt want to hear it, she just tunes me out (I don't blame her really). She has a walker and a chair and as far as assist equip in Mexico... well, you can imagine.
I will talk to her husband and her sister and get some feedback from them. I just hate being helpless but miles wont really make a difference on that front, will it.