Random Thoughts for New CALS

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Very helpful member
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May 9, 2016
Lost a loved one
Hi All,

Some will know that my husband passed in March this year, a few months short of three years from Dx. I’ve had about eight months to chew on how things went for us, and what worked and what did not. We are all individual, our situations unique but in the interests of maybe helping someone else I thought I’d post my thoughts.

1. Starting with the emotional side, all of your feelings are okay. Mad, sad, frustrated, heck even resentful as long as you don’t take it out on your PALS. If you happen to take it out on your PALS for a minute, to lose it a little apologize and move on. You are human, s/he’s human, and there are no demons or saints here, only humans trying to muddle through.

2. A bit more on the emotional side, grab your moments. You, and s/he live with ALS for often a long while before your PALS leaves this world. Enjoy the football game, enjoy holding hands or family or that great day on the deck. The moment is all any of us ever had.

3. On the financial side, if your PALS is game do the estate planning early and be done with it. If real estate is involved, make sure you get a real estate attorney involved, not just an estate attorney. Be very careful of the idea that you don’t need to worry about any of this because you don’t have much or you’re married or whatever. Often times, a good estate attorney can help you keep things completely out of probate, a gift indeed and a lot better than protracted, unexpected legal messes. Also, check out no questions asked life insurance. If a PALS lives two years from the time of purchase, it could pay out. ALS is financially distressing to devastating. Never be ashamed to think of your financial situation during your time as a CALS. My perspective is coming from the United States, I think in some European countries laws Are more clearly for the spouse or kids than in U. S. States, but do check it out regardless.

4. Don’t be afraid of exploring Hospice. We made good use of home hospice in our final year. We had many services covered that would not have been otherwise. At the point we agreed no more Rilutek, we were ready.

5. This one may be a little controversial, but I say accept your PALS choices, even if you don’t agree with all of them. If FTD is involved it gets more complicated, but In the end it really is your PALS one and only life, just my opinion.

6.Be ready to advocate for your PALS with medical professionals. You can end up in the weird experience of looking at Doctors and Nurses who are telling you incorrect things about ALS. You may find yourself in an ER full of medical staff who know less about ALS than you do. I looked at a Dr at one point and told him he needed to consult with Dr. Walk, our ALS specialist and that what he was saying was wrong.

7. Accept that very likely many, maybe even most of your friends and even relatives will fade away. People will pop up to help who surprise you. Some of the leavers will likely try to fade back in after your PALS passes, Kleenex in hand and talking about how it was hard for them. It’s hard not to be resentful, but don’t waste your soul on it.

8. The ALS society can be a precious source of loaner equipment. we got so much from them, including a smart home setup 100% free of charge. They don’t means test, it’s all whats available in your area.

9. Love yourself. For many of us this will be the worst thing that has ever happened to us. For all of us, it will be a tremendous challenge. If you are still working at a job, never put work ahead of yourself. I worked until a week before my husband passed for people who in the end treated me badly. Don’t do it. Caregiver giving you trouble, don’t hesitate to give them the shove off. Family in your face with how you are not doing it right? Shut them down, no apologies. Yes they are hurting too but YOU and your PALS are hurting AND working with it, so prioritize yourselves and each other.

10. Know you are never alone. Every CALS is with you. That’s not just words. I went to an ALS fundraiser a few weeks ago and here in reserved Minnesota had other ALS widows and current caregivers arms around me in no time.

This may all be worth just what you paid for it. Take what works, leaves what does not. ❤
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As you know Lenore I'm a huge advocate for 'the PALS get what they want, and the CALS task is to make that happen'. Even with FTD I think acknowledging it is their call is important and is why those legals and health directives are so very important. Then even if FTD is so bad they can't make on the spot decisions, you know what their wishes are.

Thank you for sharing your thoughts here, it will be so helpful for many.
Excellent advice! As always, so much knowledge on this forum. It was my lifeline while caring for my PALS, my husband.

I am now 2 months out from his passing and still sorting through the practical and emotional fallout. I'm working on finding myself again.

One more suggestion - make sure all accounts are either jointly held or in the CALS name if at all possible. I found out the hard way last week what happens when you don't.

We both used the same major credit card for 25+ years for almost everything. Cards were always issued in our individual names to both of us. I called the cc company to have his name taken off the account. Turns out it was opened in his name, not jointly. They shut it down on the spot. Would not transfer it to me. I was told I had to apply online with the generic form. The problem is that I have not worked in 3 years. I left to take care of my DH and do not for one moment regret that decision. We were living on his LTD and SSDI payments. So technically I now have ZERO income. We have money saved, but even some of the jointly held accounts are suspended until all the paperwork is done. So what is the chance of me qualifying via an online form?

Luckily, our bank was able to get me a card because of our record with them. The agent at our local branch was excellent getting matters there straightened out.

Check and double check ALL your accounts.
thanks Jrzygrl there are so many things and I'm still coming across some of them nearly 6 years out!

We need to consider PALS who don't have CALS when the document is prepared. We have an entirely different situation. Some of us have few, if any relatives so we will have to rely on outside care. The finances are different than a PALS who has a significant other or children to whom they want to leave their possessions. Everyone should have a valid Will and also specific directives. Every PALS should find someone they trust to be their general POA and someone else to be their medical POA. These two should be different people for a reason, in some cases.

I've been a medical advocate (pro bono) for two people and they really need to trust you. Just bringing up a topic that gets overlooked. I've met a dozen PALS without CALS in my travels and interviews. Some had family members in and out of their orbit and others had to rely on paid caregivers or live in nursing homes.
thanks Kim, I thought the document was on how to find and hire caregivers from the other thread?
You are right though, PALS with no CALS are in a very different situation.
I was speaking specifically to new and newish CALS, of course but yes PALS without CALS are in a whole other situation. Had Brian not married me, he would have finished his days in long term care. Honestly, that would be my own situation if I got ALS. I have relatives but none able to be be CALS.
Thank you Lenore for starting this thread, I think our shared experience can really help current PALS and CALS.

Regarding the jointly held account issue , it is really important to have the accounts set up as " Joint Tenants with Right of Survivorship" not " Tenants in Common" if the PALS wants their share to go to their CALS. The assets will be immediately owned and available to the survivor and not go through probate.
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