Old 01-27-2014, 06:53 PM #1 (permalink)
Member
 
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
mrvaughan mrvaughan is offline
Member
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
Default Palliative Care

Hello,
Lately my PALS FTD and psychosis has gotten worse and it has been suggested to me by the ALS clinic to see a palliative care doctor. I have an appointment set up next week with him, but I was wondering if any of you had any experience with this. They wanted to see me without my PALS first. What questions would you ask? If you have used this kind of care before, what was the most useful part of it?

Mary
mrvaughan is offline  
Old 01-27-2014, 09:45 PM #2 (permalink)
Barbie's Avatar
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: Palliative Care

I have never even heard of that specialty. interesting. have good examples of his behavior and issues. I am sure they will guide you.
Barbie is offline  
Old 01-27-2014, 10:54 PM #3 (permalink)
Rhonda J's Avatar
New Member
 
Join Date: 2014
City: Fairborn
State: Oh
Country: US
Diagnosed: 06/2009
Interest: I am a caregiver for someone with ALS/MND.
Posts: 20
Rhonda J is on a distinguished road
Rhonda J Rhonda J is offline
New Member
Rhonda J's Avatar
Join Date: 2014
City: Fairborn
State: Oh
Country: US
Diagnosed: 06/2009
Interest: I am a caregiver for someone with ALS/MND.
Posts: 20
Rhonda J is on a distinguished road
Default Re: Palliative Care

My understanding of palliative care is comfort care...usually done by hospice. My husband is not in the final stages diagnosed in 09...says he will live to be 100...he has hospice care because his Dr. said he could get things you need faster.. they aren't just for end of life.. it is to make the quality of life better...hope that helps...
Rhonda J is offline  
Old 01-28-2014, 01:54 AM #4 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Palliative Care

Definitely many people fear that palliative care is 'end of life', but in fact it is so much better to get them involved early.

careconfidently.com/2014/01/27/hospice-911/?utm_source=Caring+with+Confidence&utm_c ampaign=2fb67e91e5-email_rss&utm_medium=email&utm_term=0_1b 4d83a4dd-2fb67e91e5-62324365

That whole 3 lines is a link, you may need to copy and paste but it's worth a read
affected is online now  
Old 01-28-2014, 01:55 AM #5 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,966
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Palliative Care

I have posted with a link so of course it went to moderation, but it's a good article about this subject that I only came across earlier today.
affected is online now  
Old 01-28-2014, 04:18 PM #6 (permalink)
Katie C's Avatar
Very Helpful Member
 
Join Date: 2009
City: San Jose
State: CA
Country: US
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,567
Katie C is on a distinguished road
Katie C Katie C is offline
Very Helpful Member
Katie C's Avatar
Join Date: 2009
City: San Jose
State: CA
Country: US
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,567
Katie C is on a distinguished road
Default Re: Palliative Care

They actually came out to the house for us, even for the intake interviews. I agree with Barbie about having a list of behaviors... don't worry whether you think the are "issues" or just "things he does". Include times of day and triggers if you can. Have a list of medications ready, and what equipment you are using .. for example they would have provided a hospital bed, but we already had one that he was used to. Also be thinking about which issues are hardest for you personally to deal with. Do you need some short or longer term respite so you can recharge your batteries and thus be a better caregiver? Does he have trouble with strangers, so people coming early in the day may be better? Bring your legal paperwork if you have it... HIPPA forms, power of attorney, both legal and medical. I know it can seem overwhelming, but you'll probably be able to give a big sigh of relief once everything is in place.
Katie C is offline  
Old 01-28-2014, 04:25 PM #7 (permalink)
Katie C's Avatar
Very Helpful Member
 
Join Date: 2009
City: San Jose
State: CA
Country: US
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,567
Katie C is on a distinguished road
Katie C Katie C is offline
Very Helpful Member
Katie C's Avatar
Join Date: 2009
City: San Jose
State: CA
Country: US
Diagnosed: 07/2009
Interest: I lost a loved one to ALS/MND.
Posts: 1,567
Katie C is on a distinguished road
Default Re: Palliative Care

Tillie... that was a great article. There was another one listed on the page: "The anti bucket list" Also excellent. We did go on hospice both in Glen's case and with my mom (lung cancer) that we were able to develop relationships with our care teams and when "the time" did come, it was hugely comforting to be with people who had come to treat us as family.
Katie C is offline  
Old 01-28-2014, 06:47 PM #8 (permalink)
Member
 
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
mrvaughan mrvaughan is offline
Member
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
Default Re: Palliative Care

Thank you for all of your replies. We were originally recommended to do a palliative care type thing a few years ago, but it seems like just one more doctor to me. Our neurologist recommended that it was time to do this, so that my PALS comfort could be managed a bit better. I will let you know what i think after the appointment. If anyone has any other questions or things they would get ready, please let me know.
Thank you so much.
Mary
mrvaughan is offline  
Old 01-28-2014, 07:41 PM #9 (permalink)
ottawa girl's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2012
City: Ottawa
State: Ontario
Country: CA
Diagnosed: 04/2012
Interest: I have been diagnosed with ALS.
Posts: 1,510
ottawa girl is on a distinguished road
ottawa girl ottawa girl is offline
Very Helpful Member
Forum Moderator

ottawa girl's Avatar
Join Date: 2012
City: Ottawa
State: Ontario
Country: CA
Diagnosed: 04/2012
Interest: I have been diagnosed with ALS.
Posts: 1,510
ottawa girl is on a distinguished road
Default Re: Palliative Care

Mary,

I've just recently had " the talk" with ALS nurse. Here's what the plan is.

The palliative care doctor & nurse visit me at home. They come very early, rather than later in the game so that we get to know one another. We discuss all options. Visits will continue monthly and increase as warranted. At some point, they will determine that minute amounts of morphine should be introduced to subtly resolve the air hunger. I was told that as doses are increased, I will continue to be lucid and can opt to be lucid as long as possible. ( not everyone wants that) . Alternatively, I can wait until near the end for morphine, but in order to effectively address the probable more strident and frightening air hunger, a larger dose will be required and which would likely render me semi conscious. From what I understand, the small amounts, I presume will keep me calm. It will be my choice at anytime to enter our local hospice or remain at home.

I may have misunderstood or misinterpreted these details because it was a difficult conversation. Once I meet my palliative team, I will correct any error on this post.
ottawa girl is offline  
Old 01-29-2014, 07:18 PM #10 (permalink)
Member
 
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
mrvaughan mrvaughan is offline
Member
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
Default Re: Palliative Care

Elaine,
Thank you so much for the information. I was wondering if keeping someone "comfortable" would keep them in a stupor. I will be sure to ask questions about that. I am sure it was an extremely difficult conversation - I feel honored that you shared it.
Mary
mrvaughan is offline  
Closed Thread

Tags
clinic, ftd, palliative care, questions, wanted


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
Palliative Medicine/Care Tractor Boy General Discussion About PLS 19 11-10-2015 08:12 PM
A Palliative medicine doctor discusses end of life Nikki J Other 1 09-12-2015 03:07 PM
Palliative care starente15 General Discussion About ALS/MND 20 12-25-2014 05:14 PM
They don't care ! celticgirl Rants & Raves 11 08-08-2013 02:42 PM
Als care within the va desertcat6 People With ALS - "PALS" 4 04-04-2012 11:14 PM
PEG Care Miss Current Caregivers (CALS) 39 07-29-2010 07:17 PM
I seem to care more than he does beachbaby Current Caregivers (CALS) 8 11-04-2007 03:17 PM
Do you find Personal Care Workers Help to make the care of a loved one easier Elo General Discussion About ALS/MND 4 08-15-2006 11:31 AM
Where can a person go for Palliative or Complex care? Cambridge General Discussion About ALS/MND 5 07-14-2006 12:17 AM
Where can a person go for Palliative or Complex care? Cambridge Current Caregivers (CALS) 2 07-21-2005 06:48 PM


All times are GMT -5. The time now is 02:32 PM.

 

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