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Kaye and Grumpy---so glad something good came out of our experiences!
One more important idea that I'm REALLY glad I did- kept a list of people who have helped and what they did. It's easy to forget the kindnesses along the journey- and often those little kindnesses are what makes a day more bearable during the journey.
Now that Joe is gone, and my time is not consumed helping him have a quality life, I can focus on being sure that all those people get a note telling them how important they were during this time. It's time for me to pay it forward!
 
"This post was the kick in the pants I needed ...."

I'm with you on that, Kaye!

Thank you to all, and I agree it would make a great sticky for newly diagnosed.

My husband has always been an eternal optimist, and it's often served him well, especially now. However, the flip side is that all of this necessary planning is not getting done and I'm feeling more anxious by the day. And he's becoming more childlike by the day--all about trips and playing and doing "just what I want." And I understand that--he's worked hard all his life. Now I'm feeling like a giant pin to his bubble every time I want a serious conversation.

He just had his first FVC yesterday (and just getting that is a long story) and it was 65%. The doctor said that was "moderate," so husband left thinking it's not really serious. I'm getting seriously worried--is he in emotional denial or could he be cognitively unable to wrap his head around it all? Our first clinic is Jan. 2nd.

Sun's up now--time for a long walk (stress release)! Thanks again for all the info you've shared.
 
4tloml--it is the hardest conversations to have ...

I bet he is in some denial--but being an optimist I think that is normal. my hubby is too and always has been. make a list of what you want, send him an email with a list, tell him it is creating more stress on you and if he would go thru your list and get it all done then the two of you can move past it and do the fun stuff. you can even say it would be a Christmas gift to you. My biggest fear was passwords and everything on his computer because my husband is such a computer geek. He got a password protection program so I have all his passwords (and he has mine) and then he wrote a long description of where everything is on the computer. I had him update it after the first couple of years which was easy.

actually, the password protection program is very easy to use and has saved my butt many times. (you know how some sites make you change your password regularly and you forget it) it also has a feature that will open the page and autofill the password which makes it easy for him. I have a document in it as well with lots of other info.

Try to stay calm--smile! and take a long walk

Barbie
 
I've always been a planner and organized. When I met with the liaison from the funeral home, she was amazed I was on top of everything. I had to be....... I had pre-planned his funeral arrangements a year before he passed. Had all financial papers in a folder. I can't begin to tell you what a relief that was when the time came. I wrote his obituary just 4 hours before he passed. My inner voice told me to write it while he was asleep. Glad I did.

Everyone has excellent advise and willing to share. Love my "forum family".

Debbie
 
Three additions:

1) Ask your PALS' wishes about donating to postmortem medical research. NDRI is currently supplying two ALS projects w/ tissue/fluids. They will send a pathologist to the funeral home the day of death to remove what is needed; the rest can be buried, cremated, etc. There are several biorepositories, including some specific to vets, with which you can make advance arrangements or spur-of-the-moment paperwork, where a similar procedure will take place.

2) If your PALS is an eligible and willing donor in other respects, e.g. corneas, bone, pre-register however your regional OPO does it, and make it happen when the day comes.

3) Since PALS may, as we've seen recently here, change their minds about how much artificial help they'll accept, it isn't always helpful to keep asking about hypothetical scenarios, though everyone should have an advance directive.

So in relevant conversations, I stated early and often that if/when my PALS decided he'd had enough, we'd make sure he didn't suffer any further. I realize that some people might want to make this commitment and some don't. So the "go-do" here is, make sure your PALS knows what you are and are not prepared to do, against the time when two-way in-depth conversation is more difficult.

The corollary might be that if your PALS wants to fight on and you don't, you set some guidelines around that, too. In that scenario, your PALS could have misguided fears that stopping the fight means more suffering. Again, those are more easily addressed earlier than later.

Sorry to be macabre, but from the posts recently, these are topics that deserve inclusion here.
 
Thank you, Barbie. That list is a good idea. I'm just going to be patient with my list till his first clinic Jan. 2nd. As we prepare for clinic with questions and notes, it will be a good time to address that list as well. (I do already have computer passwords.)

Do clinics have social workers who address the need to get financial and legal affairs in order? Do they ever give out pamphlets or some type of checklists for patients and/or caregivers for planning at clinic?
 
Cheerleader,
Great thread, and one that merits repeating often!
I too have my 'binders' that include all legal papers, insurance, investment, banking and other info with phone numbers and points of contact. Whatever is needed to ease the burden on my bride after I die. I actually planned with the funeral home for a cremation, dispose of the ashes and no big deal kinda thing. My CALS shot that down quick, fast and in a hurry; we now have arrangements with a local veteran's cemetery! Fortunately I was able to change that plan without losing any money!
Point being...communicate with each other so there are no surprises!
 
Jeff, you are so right about communication- glad you listened to your spouse! When my dad died, he wanted nothing- sure he thought it would be better for us! WRONG! There was no closure, no time to gather, laugh, cry, share stories. Because we are having the church service for my husband when I return to Michigan in two weeks, HOPEFULLY the tears will be less likely to flow, and it will truly be a CELEBRATION of his life.
An extra hug to you, Jeff for putting things in order for your wife. Sure that is another plus on the list of why she loves you! It is a true gift to her.
 
Laurie, what is NDRI and how do you arrange those kinds of things?
 
As always, you folks give wonderful, helpful advice. Today I will start the next phase on a new thread--what to do when the journey has ended. Know you will add your own ideas and experiences to that. Too bad this help is needed, but to quote guru Max, "it is what it is!" Donna
 
Barbie, here's a link to NDRI (National Disease Research Interchange). About NDRI | NDRI: National Disease Research Interchange It is funded by various NIH agencies in part. Researchers all over the world can apply to receive biomaterials.

The donor coordinator who can e-mail you forms for the ALS projects is HNunez[at]ndriresource.org -- his name is Honesto. But if anyone out there isn't a planner, never fear -- you can sign up the day of death like I did, if the projects still need biospecimens. And many other diseases are covered besides ALS, if you know someone w/ other rare disorders.
 
Thank you so much for doing this Donna. Duringpainful and difficult time for you, you are still taking care of us. Thank you. Steph
 
This ithread is extremely helpful! My siblings and I are preparing for "the talk" with our parents and this gives usba great outline!
 
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