A question for PALS

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
983
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
I apologise for jumping on the PALS forum, but I wanted only PALS thoughts on my question. This is because only you know how you feel, and what it feels like when you have compromised breathing.

My PALS and I live in Canada but also own a house in Palm Desert. My PALS has been quite adamant about going to PD for the winter regardless of pandemic and poor breathing. Last June, my husband's SNIF test was 80, by November it was 60, by this June it was 41, and my August it was 30. He is now sufficiently supported by Bipap and trilogy, and we will go back to the clinic for another test on the 28th.

So, my question is, is it wise to bring him to the desert for 4 months (we will be flying there)? The positives about going there is that it's a much lower altitude (we currently live at 4400 feet above sea level), and it will be warm, whereas here it will be brutally cold for the next several months and he'llbe stuck inside.

The clinic is not at all in support of what we are doing, only because of the pandemic, not so much because of ALS. However, they have supplied us with 2 kinds of strong antibiotics, back up masks, hoses, batteries etc. for the machines.

I have to say I'm terribly worried about him, but he said if he goes there, gets covid and doesn't make it, he'll be happy that at least we went to our little house in the desert. We also have full medical coverage for the first 60 days.

Thoughts?

Thanks for letting me jump on your sub-forum.
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,389
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Are you really asking if we feel the risk of accelerating our death is worth it to do something we desperately want to do? I think everyone would say yes though the acceptable rises both the value of the reward and proximity of our demise. This seems to carry significant risks to you though - medical and possibly financial

if he gets covid you would be very likely to get it too. What then? What if you got it first? Who will care for him? Is he planning to try to survive covid? PALS have - or is he planning a quick exit?

full medical coverage for the first 60 days?? You are planning a longer stay? What happens after that??? Or what if you have to stay longer than that due to travel restrictions or illness?

I am sorry. covid has disrupted our lives and it is particularly hard when we know our remaining time is Limited
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
983
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Thanks, Nikki.

Yes, I'm really asking this. His drop in breathing came as a surprise so my emotions are on overdrive these days and I'm asking from a CALS point of view, and as a wife, and as a best friend, but trying also to ask from a rational standpoint. My raw emotions have me unable to think logically. This is hard because I want only what is best for him.

We will stay inside there as we do here and see how things are after 60 days. If he wants to push it out another couple of weeks, then we may. We have a friend with a plane, so we can get back quickly if necessary as it is only a three hour flight.

I guess another reason I ask is the news outside the U.S. does not paint a pretty picture of what is going on there (sorry), and makes it out to look like covid is dripping from the sky. That has given me the biggest fear, if I can be honest. Maybe we just shouldn't watch the news and forge ahead with our plans, taking the same precautions there as we do here.

The pulmonologist does not think he'll make it until next summer so that is another drive to get him in a warmer climate for the last few months of his life. It's 14F here, tons of snow, and set to go down to 0F by Sat. That makes for a long, cold winter if we stay. Sorry if I'm rambling...my husband was considered very slow progressing so, again, this drop was a very unpleasant surprise.

Thank you
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,389
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I didn’t mean it as are you really asking such a question. I was clarifying what I thought I read vs what I thought you meant.

things are generally bad here but it matters where you are. A lot. some areas are doing almost ok. You might want to research your particular area. At least in my state the department of public heath publishes daily reports which show counties and weekly which show towns. Of course things can change and change quickly.

I am sorry for your husband’s progression.
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
983
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Thanks again, Nikki. Newsome has locked Riverside County down again, so that makes me feel more at ease that he's watching the numbers so closely. The poor businesses, though. In terms of the pandemic, I hope things look better in 2021. Everyone is covid fatigued.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,245
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I understand your dilemma. Palm Springs/Palm Desert is absolutely wonderful in the winter and spring.

Only you and your PALS can make the decision, but here are some of my thoughts on your situation.

My breathing is poor (last FVC < 20%). My doctors have repeated told me I need to move to a lower elevation, yet I continue to live at 8,500 feet above sea level. I value the information my doctors provide, but sometimes find myself making decisions contrary to their recommendations (with my wife's input and agreement, of course).

We cancelled 3 months worth of travel spread over 5 trips this year due to Covid. That was a pretty easy decision because my progression is relatively slow and I think I will be able to make those trips next year. But, who knows? I may have missed my last chance to take those trips.

From what you have said, your PALS is prepared to take the risk. I understand this, as it is the decision I would likely make given the information you provided, if there was no risk to my wife.

I think the real questions is whether or not you are willing to take the risk. You will be exposing yourself for his sake.

The risks of getting Covid are still relatively low and this risk of an adverse outcome are very low. But, those risks are real. Covid is on the rise and people are dying of Covid every day.

Things I would consider in your situation:
1. Is your PALS' decision rational (not influenced by dementia)?
2. Are you willing to take the risks associated with helping your PALS fulfill his desire?
3. Can you travel in a manner that minimizes the risks to both you and your PALS?
4. Do you have a plan for what to do if either you or your PALS develops COVID? That could involve a stay in the hospital (ICU) for months. You would be unlikely to be able to travel if that happened.
5. Do you have insurance and/or the financial resources to handle a months-long ICU stay and caregivers for your PALS if you are the one who is hospitalized?
6. If you succumb to Covid, what will happen to your PALS? How will he get home? Who will take care of him?

I know this will be a difficult decision, regardless of what you decide. Let me know if I can provide any more information that you think would be helpful.

Steve
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
983
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Hi Steve,

Thank you for your reply. I find it so difficult to answer the question on if the risk is low to travel. I feel like covid is everywhere and it can be a one time slip up, either here or in PD, and one can get it.

We will be flying on a direct 3 hour flight to PD and then will stay in our community, with the odd trip to the high desert. We have unlimited insurance so if either of us fall ill, we'll be medivacced (sp?) back to Canada. The insurance is only for 60 days, so we'll reevaluate how Wayne is feeling and either fly back home for 24 hours to kick start the insurance for another 60 days, or if he's doing crummy, come home for good.

Clinic is next week and they'll test his breathing again. If it's dropped significantly, then I think we'll only plan for just the two months, if he can make it, and then come home. The news here does a really good job at making it look like covid is absolutely everywhere there and people are dropping dead of it in the streets.

Should I get sick, we are training a friend to use the hoyer lift and do the daily routine for Wayne, if anything happens. I think it's the covid I'm mostly worried about and how that may affect Wayne.

Are you on trilogy or bipap, Steve?
 
Top