Visiting my sister in last stages

[Belen]

Hi. I am new here. My sister was diagnosed in 2011. She has been in a nursing home for the last three years. We live 6,000 miles apart. The last time I was able to visit was four years (and one college kid expenses) ago. The nursing home is very good and paid for by her disability pension (universal health care system in Europe).
She had been doing very well until a couple of months ago when she had pneumonia. I was not aware, but apparently she has now lost her voice and control of the last two fingers. An eye sight controled system has been ordered but right now, she has no way of communicating. I am upset that this was not done earlier. Prior to this, she developed a care plan and put her affairs in order. She is now bedridden 24/7.
I am visiting in a week. I don't know what is going to be like when I see her. I don't want to but I think I will break down.
I am not sure what I am asking. Words of wisdom? Thank you so much in advance.

 

[codyclan]

It will definitely be a shock, I am sure. Be prepared with stories that the two of you shared or pictures or even videos. My husband enjoyed listening to old family stories, watching old family movies and old TV shows that he liked watching with his mother (like Ellery Queen and Murder She Wrote) at the end. Loading those onto an tablet that is easy to hold up so she can see them would be fun. Just being present and holding her hand and being together will be meaningful.

Try to be positive and supportive and remember she's still your sister even though her body is failing her. Breaking down is understandable, but I encouraged family to try to confine those emotions to an area outside of the room where my husband was and tried to keep the mood around him loving and positive.

Good luck and sending you virtual hugs!
Tracy

 

[Belen]

Thank you so much for your advice. Yes, that's a great idea. I have been sending her tons of pictures and videos throughout these years as a way to keep in touch. Thank god for the Internet! We have a good collection to look back on. I would like to be able to bring a little gift for her. Do you think a nice hand cream would be a good idea? I can't think of anything else to bring. Any ideas?

 

[whereswaldo]

First crying is ok, we all go through it at times and not just in the beginning. Remember she is still the same person inside even though she may not be able to move. I'm not as far along, but I do type with my eyes and can move some. My personality might have changed some, but I am still the same person.

For the communication part, there are other ways to communicate without a device. Amyandpals is a web site by a speech therapist at Forbes Norris ALS clinic in SF and she may have a some things that you could use or make to help with the communication.

Good luck and safe travels.

 

[Belen]

Thank you so much for your reply. I will check out the site you recommend. My sister is not an English speaker. Do you know if it supports other languages?

 

[whereswaldo]

I don't know if there are things already made up. But I am sure there is something you could make using letters. The care facility may have something to use.

 

[KimT]

I think the lotion is a good idea. The power of human touch is often overlooked. I would get one with no fragrance as fragrance can irritate lungs. Massaging her feet and hands with coconut oil or lotion will be very relaxing.

I'm glad you're going to see her.

 

[lgelb]

Belen,

I'm glad to hear you're going to see her. It will be hard but worthwhile. It is OK if she sees tears, but try to be present when you are with her.

The others are right, you can make up a word/phrase board in any language where she can blink accordingly. A pre-made one is probably available from a Web site in her native language if you Google accordingly in that language. You can also use a picture board but that is more limited.

I will add music to the suggestions for photos and videos...it can be very powerful. You can bring a playlist of what you and she like, and earbuds for her to drift off to sleep if she wants. In addition to photos/videos of each other, if she likes art, you could surf art museum sites, etc. Or nature, or theatre...YouTube is your friend as well as so many other sites. You can create a YouTube playlist/other bookmarks as well. If her space has walls, you can put posters on them, pictures that the kids in your lives make, etc.

When you are not there, are you able to Skype with her? You can still speak to her and show her things, even when she cannot speak; you can still ask her binary questions if nothing else. Visiting her will enable you to cozy up to the staff (bring them gifts!) to hopefully keep the lines of communication and sharing open for whatever time she has.

Best,
Laurie