End of life legal issues
February 18, 2017 5:53 AM   Subscribe

My spouse was recently diagnosed with a terminal illness. I need help figuring out what needs to be done.

We do not have a timeline, there are a lot of factors and a new-to-market treatment involved. I know about advance care directives and I am comfortable making those calls. She does not have life insurance, but we are in a pretty good place financially. I don't know the questions to ask. I'm not at my rational best, so please help me figure out what I need to figure out.
posted by anonymous to Human Relations (10 answers total) 10 users marked this as a favorite
I'm so sorry for the situation you are in.

My town has a group of very loosely organized end-of-life planning advocates whose goal is to educate people on end-of-life decisions and to facilitate conversations between family members. I occasionally see that they have classes at a local church - some online searches might tell you if there's something similar in your area.
posted by bunderful at 6:05 AM on February 18, 2017

I point a lot of my new patients to Five Wishes which is purpose-built to facilitate these conversations between patients and their loved ones.
posted by honeybee413 at 6:47 AM on February 18, 2017 [9 favorites]

I am so sorry for your situation! There is most likely a caseworker or social worker at the hospital where your spouse is receiving her care. (I'm assuming you're not going for hospice just yet because of the new treatment.) It can be a crapshoot - some caseworkers are great, and some are overburdened and burnt-out and brusque - but if you talk to a hospital caseworker they should be able to help you with your options and next steps.
posted by Rosie M. Banks at 7:12 AM on February 18, 2017

Get Your Shit Together was made for people in your exact situation. Start with the will, move on from there.
posted by DarlingBri at 7:13 AM on February 18, 2017 [8 favorites]

I suggest you look for hospice organizations in your area. They typically have resources and answers to all kinds of questions, including what questions you need to ask. They will have social workers and possibly attorneys. We had very good experience with two different hospice orgs in SE Michigan in the past 5 years with my in-laws.

Be careful, though. Hospice is becoming a big business what with all the boomers reaching a certain age.
posted by qurlyjoe at 7:15 AM on February 18, 2017

I just went through this myself, so I can understand the position you're in. I'm sorry that this is happening.

Here are a few things off the top of my head. Feel free to MeMail me for more info or if I need to clarify things.

First off, be grateful that you have some advanced warning about this. Up until the last two days of her life, we had been told that my wife would slowly recover, so we never had the hard conversations about what would happen afterwards. By the time it became obvious that she wouldn't, she was too far gone for anything to happen except for me to stand there and watch.

1) Make sure that all the t's are crossed and the i's are dotted on your power of attorney, advanced care directive, and will. Get that done now. If you don't have access to a lawyer, use something like LegalZoom. Do this now, start this weekend. In fact, start right now. Don't even finish reading the rest of this comment until you do. I'm not kidding...

2) Be prepared to be your wife's advocate throughout this. Be ready to be a raging asshole to anyone and everyone who won't answer your questions or won't give you a straight answer or tries to brush off your concerns. A lot of her doctor's were kind of hand-wavy about things at first, and she was too tired to really press them for answers. So I had to be the one who put my foot down (and in a few cases up someone's ass) to get the answers we needed for her treatment.

3) Make sure you understand how to do anything related to your household that she normally does. In my case, my wife was an accountant so she handled all the household bills. It was just by luck that I had done some of the online bill pay after she got sick, so I knew what to do and how to do it. But there were a few bills that she paid by check that I wasn't aware of, and those caught me by surprise and I had to scramble a bit to catch up. So be aware of that kind of thing.

4) If there are investments in her name, make sure that you're the beneficiary, and that the people at the bank know who you are and that you're on an accounts. If you have a house together, make sure that you are on the mortgage or that the mortgage company knows who you are.

5) On preview, I agree with the advice to be careful of hospice organizations. Without going in to too many details, I'll just say that the one I dealt with was disorganized, clueless, and useless. To this day I'm not 100% certain what they actually did, other than have me sign some papers and then bill me for services that I never saw them do. If it comes to that, get several opinions of different hospice organizations in your area, and if you can, make sure the one you choose is actually local, not a franchise of sorts for a larger company.

That's all I can think of for now. Again, feel free to MeMail me if you have further questions. This is a hard road, no matter which way it goes.
posted by ralan at 7:40 AM on February 18, 2017 [12 favorites]

Here are some best-practices I've observed from friends with terminally-ill immediate family members:

Outsource all the annoying parts of life. Hire a housecleaner, order in food, deputize friends to do jobs and research you don't want to do.

Take lots of photos and videos. Interview her on video. Start now. Here is a thread with some interviewing advice.

Make sure all the insurance, will, and banking stuff is taken care of.

Talk to the palliative advisor at the hospital- palliative means "soothing" and they can help you get set up at home with comfort care like pain medication.

If you feel like medical professionals are brushing off your concerns, try approaching them on an emotional basis. It can be beneficial to let them see you cry or be sad, sometimes it helps them connect to you better.

Befriend the social worker in your department of the hospital- they can connect you with services.

Try really hard to be present. When things are good, try to just enjoy them. When things are bad, it's ok to really feel those feelings.

Remember to see and connect to the person, not the illness or its effects.

Talk really frankly about everything. It's a relief not to mince words.

This is a hard situation; sending you strength.
posted by pseudostrabismus at 8:59 AM on February 18, 2017 [1 favorite]

Just in case, I would put a small bit of money into a bank account that is in just your name, and be sure you have a credit card where you are the only account owner. In most jurisdictions, this shouldn't be a problem (in some it is), but if there is a screwup anywhere, this avoids compounding the stress with "all my accounts are frozen".

Make sure she signs appropriate forms giving you power of attorney and whatever the medical care directive forms are.
posted by jeather at 9:04 AM on February 18, 2017 [3 favorites]

I learned this from my Mom as she was preparing for her later years. Make your banking accounts: Joint Tenancy With Right of Survivorship. That way whoever is left still can access the account and use it as normal. My Mom did her joint account with me so as she was unable to take care of bills, etc. I could for her. Then when she died I was able to use the account as normal to pay for funeral expenses, household bills, etc. It was a godsend. I had heard of friends whose accounts were frozen when the spouse died and they had to depend on others in the family to settle bills, etc until probate.
posted by PJMoore at 7:45 PM on February 18, 2017 [2 favorites]

Get extra copies of the death certificate. Even credit cards(!) may want to be sure the card holder is dead. Be prepared to pay for every change of title for everything you own jointly, or is not solely in your name now, e.g., the house and car(s). PJMoore (above) is right. Be sure you have JT WROS bank account. Taking your wife's name off eventually will necessitate one of those copies of her death certificate.

Make up your mind that you will not be irritated or crushed by the legal necessities. Those people are just doing their jobs.

If your wife can still speak, ask about her family things that you don't know. What did her parents do? Did anyone in the family hold public office, write a best seller, etc? Your children will be interested some day.
Ask her what she wants done with her things. Her jewelry? Her great aunt's china? Her clothes? You can be overwhelmed by these things if you need to solve them alone. If you wife has no preferences, enlist her daughters or friends in the disposal. There is no great hurry; if a year goes by without your donating her things, it is OK.

Speaking of children, be sure they know what to expect. Give them time to get used to the idea.
It is all right to cry.
posted by Cranberry at 12:31 AM on February 19, 2017 [2 favorites]

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