Palliative Care

[mrvaughan]

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

 

[Barbie]

I have never even heard of that specialty. interesting. have good examples of his behavior and issues. I am sure they will guide you.

 

[Rhonda J]

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...

 

[affected]

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_campaign=2fb67e91e5-email_rss&utm_medium=email&utm_term=0_1b4d83a4dd-2fb67e91e5-62324365

That whole 3 lines is a link, you may need to copy and paste but it's worth a read

 

[affected]

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.

 

[Katie C]

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]

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.

 

[mrvaughan]

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

 

[ottawa girl]

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.

 

[mrvaughan]

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