CALS-what to do along this journey

[cheerleader]

Still trying to make sense of this 26 months, 15 day journey through the ALS maze. Now that my husband is free, I want to do something that will honor him, and help others struggling with all the ins and outs of doing the best for our PALS and still preparing for our lives without the people we love. So, I'd like to share some of what has been helpful for me during the journey and now, after the journey is over! (Which it really is not, as I've discovered! So much to navigate- but will share that later!). I hope our resident experts like Tillie, Mike,Debbie and all the others who have so much to offer will chime in. Fair warning- some of these are NOT things we CALS want to think about but you will be glad you did later.

THINGS THAT HE DID TO MAKE IT EASIER!
1. Updated wills, power of attorney, medical directives, etc.
2. Gave me a list of people, phone numbers that he wanted notified when he was gone. Of course, I knew mutual friends but his work friends, golf, gym buddies, etc. were not known by me except by name.
3. Sat down with me and gave me a complete list of "to dos" of things I never handled.
I know when and how often to change the oil, when to service the car, rotate the tires, etc.
also know when to do maintenance around the house and yard, with contact numbers. So have the date to have the furnace checked, the filters changed, the water salt added, the septic pumped, etc. I know who to call for fertilizing, weed killing, etc and the schedule of these yard needs.
4. Get a list of passwords for any online accounts, investments, etc. IF your PALS is on Facebook, be sure you have that password - or the facebook page will be floating in cyber space forever!
5. Get your name jointly on EVERYTHING! That includes all vehicles, property, insurance, bank accounts, stocks, investments and EVEN utilities! You may have to get information or make changes even when your PALS is here- and most places WILL NOT talk to you if you aren't jointly on the account. I had to put hubby on the phone SO many times to give permission for me to get information or make changes and it was difficult (and tiring ) for him to speak. Joint accounts save a lot of grief.
6. Have that HARD talk about your PALS wishes - cremation, burial,etc. My hubby told me the day before he died where to put his ashes and what a relief to know I can honor his request.
7. This is a TOUGH one - and one I didn't do - but our daughters did ( unbeknownst to me)
And that was to visit our local funeral home and get basic information. In our case, my Joe passed away at our Florida vacation place, and it was so unexpected. I was VERY grateful our daughter flew down and brought this info as we had to make arrangements while still in shock and deep mourning. We were able to get exactly what my hubby wanted WITHOUT the pressure of being guilted into something bigger because we knew options and basic costs. Unfortunately, some funeral homes will present you with very costly options if you aren't prepared- and fail to offer what you really want if you haven't thought these through.

Later I will share some of what I have/am learning about living as the survivor. And have already had some real shocks ( like learning all my insurance coverage except Medicaid was cancelled as of today!). The list of things to do is lengthy- and no one gave me direction on this, so I am learning by experience!

Hope some of you may benefit by these ideas- even though discussing them is painful. We need each other in this journey.

 

[Graybeard]

Thank you.

 

[affected]

fb - I'll tell a nice fb story

I hope Chris's fb page floats forever. I can log into it with the fb app on his old iPad, but I haven't.

He used to have an orchid competition with a very old friend on fb. After he passed, I friended her on fb, and we continue the competition ON HIS PAGE. It's lovely, and anyone who knew him, that I don't know I guess see the photos going back and forth.

I'm afraid I'm winning at the moment as I have a heap of gorgeous ones in bloom everywhere. Chris and I both so loved orchids, and so I enjoy continuing conversation on his page Chris loved flowers full stop and for some years grew paper flowers commercially. He always had an eye for colour and beauty.

Christopher Jeffery, if anyone wants to look it up and see some awesome orchids.

Thanks for sharing that list, they are all important things, and I only had some of them in place myself and it's not at all pleasant wrestling your way through some of them in the early days of numb shock and grief.

 

[cheerleader]

Tillie, you are a gem! Actually, my hubby didn't have Facebook- but my friend did, and I KNOW her spouse has no clue how to remove it. Or maybe, like you, it brings comfort! We take our comfort where we can!

 

[affected]

It's true, take comfort where you can!

If it hadn't been for the orchid competition, I probably would have just taken it down one day.

Another important thing for past CALS to get straight is - there are no rights or wrongs in how to grieve. You do what you gotta do, and your friends and family should just support that.

I wonder if we should make a sticky for the past CALS section with this kind of stuff in it?

 

[Atsugi]

CHEERLEADER has a great list. To guide my children through my own passing, I've amassed three binders of stuff. The first contains a checklist of what to do and who to call when I pass, the second holds all our legals, wills, advanced directives and such, and the third holds all our important papers, birth certificates, deeds. etc.

But I disagree with Cheerleaders #5 suggestion: I don't believe in joint accounts for everything. In fact, we put most of our assets into an irrevocable trust fund for our children, administered by a trustee. The life insurance paid directly into it and I never saw the life insurance check pass through my hands. In short, my children were rich and I was (relatively) poor. Also, an estate trust bought a house and rented it to me for ten dollars. This insured that there was no public record of my owning assets. You'll see in a moment why we needed this legal subterfuge.

To access nonjoint accounts after death, you just need a death certificate and a designation of beneficiary on file.

We needed this. While Krissy was sick, she rear-ended a driver and they sued for the maximum amount of assets they could find. The lawsuit and it's harassment went on for nearly two years. Since I had no assets on record and no control over the cash, the plaintiff had to settle for my insurance coverage only.

Also, once a person dies, their Social Security number is "retired" by the SSA in a public database. Debt collectors then chase down all that person's debts to force the survivor to pay them. Trying to pay off all the debts in one year can be devastating right after the death of a loved ones. By using nonjoint accounts I was able to fend off the debt collectors, and pay the debts on my own time over the coming years.

Krissy was our main breadwinner, and had run up high debts. We used lawyers to negotiate with her creditors so we ended up paying later than usual or lower amounts. If they were joint accounts, we would have had less leverage, and might have faced bankruptcy, instead.

So we hired an estate attorney to set all this up for us in the eleventh hour. She came to the house with her assistants, took Krissy's answers by eye-blinking, and ensured all the papers were done overnight. (I was told that, after they drove away, they had to stop on the road to have a good cry.) To this day, I'm thankful I hired a responsive and caring estate attorney.

I've arranged family deaths both ways: with planning and without planning. Believe me, the preparation is well worth it.

 

[Atsugi]

Another thing I did to help my own grieving process.

I wrote the obituaries and eulogies to share with everyone. They weren't perfunctory. They showed the many things she had done in life, and the reasons I was proud of her. She didn't "lose" her life; she lived her life, fully and well, inviting others along the journey with her.

I put together a little shrine to her over the fireplace mantle. It's an accepted part of home. Every once in a great while, when I can stand it, I root through the photos and select which few to scrapbook and which many to throw out. I've allowed myself 3 years so far, and I still haven't sorted through all of her stuff.

Oh, one other thing. You may need assistance filing the "Taxpayer's Final Tax Return" to the IRS. I used H&R Block.

 

[davbo49]

thanks too

 

[WMS10]

I also set up an Irrevocable Trust. Not only to deal with finances after my wife passes away, but also to deal with the possibility that I passed away before her. The plan includes detailed instructions on how my kids are to be cared for, as well as how their guardian is to care for/pay for my wifes on going medical expenses. Although she is in the late stages of ALS, there's always a possibility that something could happen to me today, ........then what. The attorney I used was great and helped me plan for several different scenarios. With plenty to worry about, it's nice that the wills and such are completed. Just my two cents.

 

[Diane H]

I wonder if we should make a sticky for the past CALS section with this kind of stuff in it?

Tillie

Yes! Excellent info here. I suggest it go in the Newly Diagnosed category too. So many newly diagnosed people have questions about planning and it needs to be done early for peace of mind. Waiting until the ALS is advanced only makes it harder to accomplish. And it is a shared responsibility, not just the CALS.

 

[affected]

Mike that information is so well presented about financials!

 

[cheerleader]

Thanks for all the contributions.
Mike, you make some excellent points, especially regarding protecting your family against lawsuits, etc. Do think each situation is different and needs to be accessed accordingly. You had young children to protect! Loved the idea of the binder with all that information. For me, personally,because we are older and basically debt free, it was important to simplify- and joint accounts helped that. But I sure get your points! Your tribute mantel is a beautiful idea. You have honored Krissy in so many ways.
WMS, you are really on top of things with your plans laid out for the event of your death before your pals.
Like Mike, I found writing the obituary cathartic and a chance to share the beauty of his life. One of our daughters had prepared a basic obituary several months earlier- and gave it to me as a starting point. That was a great help in clearing my grief muddled mind and letting me change it from basic to personalized!

 

[Barbie]

This is a great post! another thing to note, a CALS should do all the same things that they want their PALS to do--because none of us know when our time is up. And, I think if you are doing it TOGETHER it is not such a "you are dying now" thing.

I know my dad wrote a very long obit for my mom when she died and I think it helped him. ( he also has already written his own obituary! ) He also has the binder with everything in it for me. I have all the passwords for my pals, but don't need the binder as I am already in charge of all those things anyway.

Thank You Donna for starting this you are so kind~!

 

[skipper66]

Great posts!

 

[Grumpy'sWife]

This post was the kick in the pants I needed to sit down with Grumpy and talk things through to the conclusion. We have an appointment set up for Friday with an attorney we know here in town who will come to the house. Once again you have made things easier for me, no, for us!
Thank you again,
~Kaye and Grumpy