Old 04-13-2018, 11:24 AM #1 (permalink)
Belen's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Belen Belen is offline
New Member (Say Hi)
Belen's Avatar
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Question Visiting my sister in last stages

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.
Belen is offline  
Old 04-13-2018, 11:39 AM #2 (permalink)
Member
 
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 336
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
codyclan codyclan is offline
Member
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 336
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
Default Re: Visiting my sister in last stages

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
codyclan is offline  
Thanks from
Belen (04-13-2018)
Old 04-13-2018, 11:47 AM #3 (permalink)
Belen's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Belen Belen is offline
New Member (Say Hi)
Belen's Avatar
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Default Re: Visiting my sister in last stages

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?
Belen is offline  
Old 04-13-2018, 11:52 AM #4 (permalink)
whereswaldo's Avatar
New Member
 
Join Date: 2018
City: Northern
State: Ca
Country: US
Diagnosed: 06/2013
Interest: I have been diagnosed with ALS.
Posts: 83
whereswaldo has a spectacular aura aboutwhereswaldo has a spectacular aura about
whereswaldo whereswaldo is offline
New Member
whereswaldo's Avatar
Join Date: 2018
City: Northern
State: Ca
Country: US
Diagnosed: 06/2013
Interest: I have been diagnosed with ALS.
Posts: 83
whereswaldo has a spectacular aura aboutwhereswaldo has a spectacular aura about
Default Re: Visiting my sister in last stages

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.
whereswaldo is offline  
The Following 2 Users Say Thank You to whereswaldo For This Useful Post:
Belen (04-13-2018), wishmobbing (04-13-2018)
Old 04-13-2018, 11:59 AM #5 (permalink)
Belen's Avatar
New Member (Say Hi)
 
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Belen Belen is offline
New Member (Say Hi)
Belen's Avatar
Join Date: 2018
City: San Diego
State: California
Country: US
Diagnosed: 00/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 9
Belen is on a distinguished road
Default Re: Visiting my sister in last stages

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?
Belen is offline  
Old 04-13-2018, 12:11 PM #6 (permalink)
whereswaldo's Avatar
New Member
 
Join Date: 2018
City: Northern
State: Ca
Country: US
Diagnosed: 06/2013
Interest: I have been diagnosed with ALS.
Posts: 83
whereswaldo has a spectacular aura aboutwhereswaldo has a spectacular aura about
whereswaldo whereswaldo is offline
New Member
whereswaldo's Avatar
Join Date: 2018
City: Northern
State: Ca
Country: US
Diagnosed: 06/2013
Interest: I have been diagnosed with ALS.
Posts: 83
whereswaldo has a spectacular aura aboutwhereswaldo has a spectacular aura about
Default Re: Visiting my sister in last stages

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.
whereswaldo is offline  
Old 04-13-2018, 12:12 PM #7 (permalink)
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,715
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,715
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Visiting my sister in last stages

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.
KimT is offline  
Thanks from
Belen (05-27-2018)
Old 04-13-2018, 01:49 PM #8 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,818
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,818
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Visiting my sister in last stages

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
lgelb is offline  
Thanks from
Belen (05-27-2018)
Closed Thread

Tags
age, bedridden, diagnosed, disability, eye, fingers, health, new here, nursing home, pneumonia, stages, voice


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Re Visiting ricea Do I Have ALS? Is This ALS? 3 08-22-2017 08:27 AM
I'm back from visiting my dad. skipper66 Other 7 06-19-2014 01:45 PM
visiting father with ALS anna75458 General Discussion About ALS/MND 12 09-24-2012 08:27 AM
Guilt is visiting marya Current Caregivers (CALS) 64 05-30-2010 04:40 PM
Visiting sister with ALS oldmoor General Discussion About ALS/MND 6 06-20-2007 10:12 PM


All times are GMT -5. The time now is 05:22 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016