My spouse has a terminal diagnosis. What do I need to do?
January 21, 2015 2:22 PM   Subscribe

My spouse has a terminal diagnosis. What do I need to do?

My spouse was given a diagnosis of approximately 18 months to live about 5 months ago. He's doing okay health-wise. Not great, but okay and maybe he'll beat the odds by some stretch but this diagnosis is terminal. No one beats it for good. So, here's me, trying to prepare for the eventuality. We are married with an elementary school-aged child. We own a house together in the U.S. We both are currently employed full-time. We are working with an estate attorney and have a Trust in the works.

What other logistical things should I be thinking about? For example, I need to get passwords for all his major online stuff, but what else?

Also, we're both in therapy individually (as is our child) but we're basically doing that because everyone says we should but I can't say that it's actually "helping" any of us. It's a horrible situation and what could therapy even do to make it better? What would successful therapy even look like for us? Frankly, my time is so stretched right now that if I could jettison that weekly appointment in favor of going to the gym, I think I'd be better off. Do I need to be in therapy?
posted by anonymous to Health & Fitness (36 answers total) 23 users marked this as a favorite
I'm so sorry.

Get your shit together is a website made by a woman whose husband was killed while riding his bike. It addresses all the stuff she had to do after his death and helps you get it done ahead of time. There are templates and checklists and things. I am sure you will find things there that you had not considered.
posted by librarina at 2:26 PM on January 21, 2015 [86 favorites]

You should look into Hospice resources in your area. They will have a lot of information for the patient and their family members, on how to deal with the end of life issues that you will be facing at some point.
posted by Midnight Skulker at 2:29 PM on January 21, 2015 [10 favorites]

Regarding the therapy thing and whether you need it, honestly only you will be able to answer that. I'm not a psychologist but my advice would be to spend time together as a family and enjoy each day together, instead of the therapy. Live, love, appreciate each other. YMMV of course. I'm so sorry that you are going through this.
posted by FireFountain at 2:34 PM on January 21, 2015 [10 favorites]

I had a friend who was given a terminal diagnosis and told that the chance he would live over a year was in the single digits, and that the chance that he would live over two years basically didn't exist. He lived for another decade, and while part of that was definitely difficult, he was also able to continue doing things he loved like playing music.

I don't know for sure which things helped him the most, because we threw many things at the illness, including things the docs either didn't approve of or actively opposed, such as Chinese herbs, massage, and dietary changes.

Doctors are not gods, they don't know when your spouse will die. Don't roll over and give up just yet. If it were me I would scoff at the idea that he has only 18 months to live, and would be researching the heck out of treatment alternatives. In your case, another decade would mean he would live to see your child grow up. So important, and so worth fighting for.

In the same vein, if you find a gym trip more valuable than a therapy appointment, by all means, so it! Don't listen to advice that doesn't feel right to you.
posted by mysterious_stranger at 2:36 PM on January 21, 2015 [12 favorites]

One potential benefit of therapy at this point is that if you find yourself with heavy emotions that you can't or don't want to express to your spouse, your therapist's office is a safe place to get them out. Only you know whether a regularly-scheduled appointment is useful to you, but if you decide it isn't, it may be worthwhile to ask your therapist if they can do intermittent as-needed appointments to give you an emotional pressure valve.
posted by dorque at 2:40 PM on January 21, 2015 [16 favorites]

I would jettison the therapy in favor of personal time (gym) or family time. You can always go back to therapy if you think you need it and can always call.
posted by 724A at 2:42 PM on January 21, 2015 [4 favorites]

You do not need to be in therapy if you feel like it's not helping you.

Metafilter is way more helpful than any of my therapists ever were.
posted by Melismata at 2:43 PM on January 21, 2015 [18 favorites]

what could therapy even do to make it better? What would successful therapy even look like for us?

Living grief is a complex and evolving thing. Just as an example, rage is a pretty common part of that; you're allowed to be angry your husband is leaving you and your child; your spouse is allowed to be angry you get to stay and he doesn't; you're both allowed to be furious about any number of things. But the wider world is generally not so comfortable with that so some people find a therapist is helpful. Therapy provides a validating space to give voice to whatever a person may be feeling.

But you don't have to be in therapy, no. You need to have a support network, and you may find it very helpful to have a therapist with whom you already have a relationship when you are wading through grief after your husband dies.

I am very sorry your family is facing this.
posted by DarlingBri at 2:47 PM on January 21, 2015 [12 favorites]

Maybe you don't need therapy right now, but might later. Therapy is a good place to get your shit out privately. As someone else already said, without your spouse around. And realistically speaking, treating your friends and family like your therapist (i.e. ranting/complaining/crying on them a lot) will eventually wear out your friends and family. Let's just say I drove off a good chunk of people before going to therapy because I was having people play Shrink Of The Day on me whether they wanted to or not.

Look, if you don't want to go right now, don't go. But reserve the option to go back later when the shit really goes bad.
posted by jenfullmoon at 2:49 PM on January 21, 2015 [5 favorites]

Ideally, successful therapy at this point should be where a) you learn useful coping skills for today and the inevitable future (and for yourself and as a parent), b) can safely vent the stuff that you just can't say elsewhere, as those things come up.

I think if your current therapist does not do grief/bereavement as an emphasis you might take a break and go looking for someone who does (if you're already in the hospice system*, ask them, or look to see who's running support groups in the area). And maybe you only need to see them once a month for now and step up only when you need to. But I think since you do know it's coming, now is the time to learn those skills and maybe start building the mechanisms you'll use later with your child.

*Everyone's local options are a little different, but most hospice programs will begin to work with you administratively long before providing any services, and they may have resources useful to you in the estate planning/legal/general-admin processes that you're starting. They probably have checklists of what you need to do now. And you can also talk about palliative care plans long before they're necessary - whenever you and he want to do that.
posted by Lyn Never at 3:02 PM on January 21, 2015 [1 favorite]

I am so sorry, this has to be so stressful and sad and complicated.

If therapy isn't helping, don't go. It's not going anywhere, if you want it later, you can always start back up. You might check out support groups if you think hearing how other folks are dealing would help more.

Remember to do normal family stuff. It's really important. Anything you've always wanted to do, do it now, while your spouse is still physically healthy enough to do it. Disney? A cruise? Europe. Do it.

Have your spouse write down things he wants to pass down to your child, a blog, vlog, journal, letters, random thoughts.

Start now taking over all the finances, so that you're in the groove and know what and when, for when your spouse isn't up to it. Or if you do that already, it's cool.

Get your name on all the accounts, phones, electric, gas, cable. If not Mr & Mrs have it all put in your name. Ditto the credit cards. I used to work at the phone company and it was a nightmare to change a name after someone had died. We'd have them send copies of the death certificate. Brutal. Spare yourself the hassle when you're most vulnerable.

When your spouse feels up to it, discuss his end of life desires, and his funeral. It's grim, but isn't it better to sort it out now, with his input, rather than leaving it up to the funeral industry when your defenses are down?

I know I'm a stranger on the internet, but if there's anything I can help with, let me know.
posted by Ruthless Bunny at 3:04 PM on January 21, 2015 [11 favorites]

Know all the data about your husband. If he was ever in the military, know all his dates and numbers. He might get a free burial at a national cemetery where you could be interred also. (You would still pay for the mortuary services, but not for the burial plot.)
Know where his insurance policies are. Different entities require different proofs: Birth certificate, marriage certificate, death certificate.
If he pays the household bills, take over or at least understand that task. Know the dates when bills must be paid. Add your name to utilities.
Be sure your accounts are joint with right of survivor (JWORS) so you will always have access.
You will never regret spending as much time as possible with your husband. Take pictures with him and the children. They will treasure them.
posted by Cranberry at 3:23 PM on January 21, 2015 [4 favorites]

My apologies for being so coldly practical, but if your husband is a person who has a lot of stuff it would be good for him to deal with that before he dies. He could go through it with you and work out what is useful to other people in the family, what should be sold after his passing and what is useful only to him and should be tossed.

Well after ten years after he died I am still whittling down what my father left behind. Grief and loss is part of that slow-ness, but so is the plain practical problem of not being able to ask "What is this, why did you keep it, do you mind if I throw it out?" It has taken its toll on my mother as well.

You have my sympathies.
posted by deadwax at 3:25 PM on January 21, 2015 [8 favorites]

Oh, therapists are also useful because it's a room where you can scream about the people who tell you to never give up hope, ask if your husband has tried grapefruit extract to treat his cancer, try to cheer you up with tales of beating a terminal diagnosis, or imply that if your spouse dies, you just didn't try hard enough.
posted by DarlingBri at 3:42 PM on January 21, 2015 [39 favorites]

I would say therapy is a really really good idea, but you may need another therapist or you may need to make some changes with the therapist you're seeing now.

Therapists are there to help you through difficult times, among other functions. This is a very difficult time. You can tell a therapist things you wouldn't, couldn't and/or shouldn't tell anybody else. You can have a messy sobbing fit with your therapist and rant about even your most petty, selfish concerns, which you may not want to do with your husband or a close friend. Your therapist can suggest things that would never even occur to you, based on things you wouldn't tell anybody else.

Tell your therapist you're questioning the usefulness of your therapy, and talk about what you'd hope to get out of this. Maybe your therapist can adjust their approach, or maybe you need a grief counselor. But if you can afford to see a therapist right now, you REALLY should. You're going through something nobody should ever have to go through, but far too many do.

Unless your husband loves his job, or unless you need the money so badly that he absolutely cannot quit, I'd suggest he leave it as soon as he can or cut back his hours if at all possible. I thought I was probably terminal for a while in 2014, and if I'd had to go off to a day job then I would've been going nuts watching each day tick away while I sat at a desk. Ideally this should be a time for him to do the things he wants to do or really NEEDS to do, before he passes away.

I'm so sorry you're going through this.
posted by Ursula Hitler at 3:45 PM on January 21, 2015 [3 favorites]

Mod note: Folks, please stick to the question and avoid debating with one another. Thanks.
posted by restless_nomad (staff) at 4:02 PM on January 21, 2015

The legal stuff is huge. We're in the midst of doing some similar estate planning and I had no idea how important it was. Be sure you've thought through the guardian issue for your child since you shouldn't just be thinking about what happens when your husband is gone - you should also be thinking about (sorry) what happens if you *both* are gone. Who do you want to look after your child? I know it's a horrible thing to contemplate but talking through that with my husband was super helpful and really caused us to consider a lot of planning stuff.
posted by otherwordlyglow at 4:04 PM on January 21, 2015

I'm sorry this is happening. :(

I second the recommendation of Get Your Shit Together. Lots of excellent, useful information and insight.

Do not feel bad if therapy does nothing for you. Nothing works for everyone all the time. Maybe you will come back to it later and find it useful. Maybe you won't. The thing is that when you have a Big Stressful Event, you try all the things available. Then you only continue to use the ones that actually work for you.

If you feel going to the gym would be more helpful, then by all means, do that instead.
posted by AllieTessKipp at 4:08 PM on January 21, 2015 [2 favorites]

To follow up on deadwax's suggestion about stuff: when my cousin's husband died after a rapid, unexpected illness, there were a few people bothering her to claim things that had belonged to her husband: stuff like people saying "Oh, Bob and I always enjoyed fishing; I know he'd want me to have his rod and reel." It was not a major problem--it was easy for her siblings to run interference on these requests--but they were absolutely the last thing in the known universe she wanted to be dealing with (and thankfully, no-one was a complete asshole about it). If you and your spouse feel up to it, you might consider making a list of things like that, so someone who is not you can deal with those sorts of requests or so that you don't have to make decisions while stressed about it.

It's a small thing--but it might be worth working out ahead of time.

And like lyn never suggests, definitely work out the hospice plans in advance--at what point in the illness will you move to hospice, who you will want to visit (or not. Again with my cousin's husband--there were people not welcome in the hospital and that had to be managed), what palliative steps to take. We did that for my grandmother and it was helpful to all be on the same page in advance.
posted by crush-onastick at 4:17 PM on January 21, 2015 [1 favorite]

Maybe think about reducing your work schedules? Reading your post one thing that jumps out is that you're both still working full time. Could you transition to part time? do you have a plan for when your husband might like to step down? When you might need some time with family or for yourself? Work can be extremely valuable in maintaining structure and personal fulfillment but it can also be source of stress and who the hell cares about XYZ.*

Could you do extended weekends? Family chill out days watching movies? Drives where you go and get lost? Planning, making fancy dinners for the three of you? Whatever brings you some joy and peace while spending time together.

I'm sorry, this must be so hard to experience.

*obviously this has to be considered in the broader context of money, benefits and health insurance.
posted by five_cents at 4:22 PM on January 21, 2015 [8 favorites]

Do people know? You need a roll out plan for telling non-confidantes and someone to execute it. Identify a person associated with each workplace, club etc and have all communication through them. Ideally designate a close friend or family member to update those folks so all you really have to do is say "it's time" and it's all taken care of.

Get your fmla paperwork and rules in order too.

It sounds cold to think about this ahead of time but it'll ease everything when you need time off for medical visits or your spouse enters hospice.
posted by fshgrl at 5:20 PM on January 21, 2015 [1 favorite]

Regarding the therapy, maybe try a different therapist? I've had some really crappy ones and some really awesome ones. It might help you to develop a rapport with someone now to help you cope after your spouse passes.

And I'm sorry to hear this. My heart goes out to you.
posted by radioamy at 5:28 PM on January 21, 2015 [4 favorites]

You are stretched thin. Figure out whatever it is that you can stop doing and then stop it. Hire cleaners, nannies, etc within your budget. Do you have brothers or sisters that can come and help with respite and child care? Can you eat more takeout, online order your groceries, etc? What kind of assistance do you have through insurance and government agencies to assist with your spouse's activities of living, including driving to appointments. Have you considered cancelling your child's extracurricular activities for the year or getting other parents to do all transport and supervision? I also agree with the suggestion to step back from work if you can or take a low stress job.

I found therapy helpful to deal with caregiver fatigue when I had it and inevitable guilt from not doing things. I didn't go every week though. I found 4-6 sessions plenty. Alternatively, you might take something like a mindfulness based cognitive therapy to teach coping skills. MBCT is also great for managing pain if your spouse is into that. Go to the gym if that is what you want.

Sorry it is really tough with an ill spouse, let alone a terminal spouse. Do what you can to enjoy the time you have and jettison the rest.
posted by crazycanuck at 5:30 PM on January 21, 2015 [1 favorite]

Have him record stories about his family history and childhood (funny stuff, important stuff, genealogical stuff, etc.), and stories about things he remembers from your child's younger years - everything from when kidlet was born to first steps to the time he accidentally the diaper full of poo to the vacation you all took last year. There will come a time when your child's memories about some of these things will fade. I wish I'd asked my mom to do this before she died. I'm really sorry you all have to go through this.
posted by rtha at 5:46 PM on January 21, 2015 [12 favorites]

Maybe write a list of all the things you're currently doing that take up time and start cutting them and handing them over to people or automating them. One way that's helped me sort a list like that is to mark the crucial things only I can do with an A (only I can shower myself or do part X of my job), a B next to the things I really want to do for sanity (sleep eight hours) and then write a separate list of everything left and estimate how much time they take in a week. I found once doing this I had about 16 hours going to various obligations and tasks that I decided to cut or delegate.

Keep what you have to do and what you want to do, chuck the things you feel you "should" do.

I am so sorry and I hope you have much joy and love too in the next years.
posted by viggorlijah at 5:49 PM on January 21, 2015

I'm so sorry you're going through this.

Re therapy, I was in high school when my brother was given 18 months. My school set me up with three different counsellors; one at school, one at a youth centre & another specialising in bereavement. I didn't feel like any of them helped while my brother was sick but I formed a warm relationship with the one at the youth centre which helped a lot later. When my brother died I sat at his bedside all night and the next morning, very tired, very emotional, first thing I wanted to do was go see my youth centre lady. I went there straight from the hospital, she knew what was going on with me so she cleared her morning for me. It was such a comfort to have someone professional who understood what to say and a familiar/safe place for me to let it all out. I didn't want my parents to have to worry about me on top of their own grief and you probably feel something like that with your child so yeah, maybe find someone you feel comfortable with in case you want someone familiar later.

Take care of yourself.
posted by stellathon at 6:04 PM on January 21, 2015 [9 favorites]

I was in your child's position a couple of decades ago. I wanted to reiterate rtha's suggestion of making tapes (or having the two of you make tapes together) with stories of family history, important life events, etc. I don't have much to remember my dad by, but my parents did the tape thing and it's one of the only ways I have to feel connected to him (the reality is that an elementary-school-aged kid won't be able to remember his dad very concretely after growing up).

You might want to have a financial planner involved, especially one familiar with any life insurance benefits provided by your husband's employer. In our case, knowing how to "work the system" with respect to benefits ended up making a *huge* difference in the total life insurance payout.
posted by The Notorious B.F.G. at 10:38 PM on January 21, 2015 [1 favorite]

I'm so sorry. I wish you guys all the best. If you don't feel relief or an easing or a sort of "I need to walk around a bit while all this sinks in" feeling after therapy at least some of the time, taking a hiatus makes sense. It's good to have gotten to know a therapist in case things emotionally get worse suddenly; then you can jump right in and won't have to start from Ground Zero giving someone the backstory. But if you've built that foundation, then by all means take a break and go to the gym. If, after 3 weeks, you feel worse from not having had that support each week, you'll know and can go back then.
posted by salvia at 12:18 AM on January 22, 2015

There are books that can be filled in by a person about their life to be left for their children. I gave a book similar to this one to my mother several years ago and she told me I could have it when she passed. Also here is something that might be helpful that can be filled out with details you may not think of. So sorry you are going through this.
posted by just asking at 3:59 AM on January 22, 2015

In addition to making tapes, as people have suggested, please take video of your child and your husband together. Your child will treasure those pictures with their dad forever.

I'm really sorry you are going through this.
posted by roomthreeseventeen at 4:44 AM on January 22, 2015

A significant portion of my last job was about helping individuals make preparations for end of life care in the home, specifically accessibility and comfort and such, I was also lucky enough to run a program that helped me make purchases on behalf of those folks for equipment and such. I'm no help for any of the legal, financial, or probably psychological issues you're dealing with, but I MAY be a source for quality of life equipment/suggestions/etc, depending on what your plans are regarding where he'll be and what you'll do as the time draws nearer. Please feel free to contact me directly if you have any questions that way. I find that often doctors and therapists may be concerned with the body and the mind but they have no knowledge (or often interest) in how to make sure you can mind those issues in your own home.
posted by TomMelee at 5:31 AM on January 22, 2015 [1 favorite]

Going to the gym sounds like a really good stress-relieving idea, and I hope you get to do it often. Is it a gym that has anything for kids? My gym has an indoor heated pool and I take my 9 yr. old sidekick swimming twice a week during the colder months. Well, I do laps, she does mermaid stuff and the occasional lap. Kids need stress relief too!

I hope you also have close friends and family for support.

In my totally non-professional humble opinion stress-relieving exercise and caring people may be more useful than therapy right now.
posted by mareli at 8:21 AM on January 22, 2015

I am so, so sorry.

Re: therapy - only you can answer the question of whether you "need" to be in therapy. Everyone is different. However, I can tell you what therapy looks like for two people very close to me who are going through similar impending huge losses in their lives. The first person is using her therapy sessions to find better ways to communicate with the various people in her complicated family situation (divorces, girlfriends, multiple families involved, etc.) and to find ways to discuss sensitive topics with the terminal family member (like the will). The other person is using his therapy sessions to help manage overall life stress, and to help him deal with and respond better to the extremely high anxiety of his terminal family member. Both of them have voiced that therapy has certainly not made dealing with their loss any "better" or "easier" - it's awful no matter what. However, it has helped them to identify and understand feelings that arise in these situations, and to cope better in general. It's also nice to have someone outside of the family to vent to when things get really tough, which you may find very valuable in your role as caregiver. Therapy can be anything you need/want it to be. That said, you don't necessarily have to go every single week. Perhaps a few establishing sessions are in order, and then you can visit on an as-needed basis when difficulties arise? Running, crushing some weights, and other exercise can certainly be therapeutic in their own rights!

Try thinking of your therapist as just one member of the very large support group you are going to need to get through this. Caregiver's Fatigue is a real thing and something you should not underestimate. Please don't hesitate to reach out for help whenever you need it.

I also second the suggestion to research and get established with hospice care early in the process, so that your husband can make his wishes known and you can get all of your end of life fears and questions addressed. They are super caring people who have a lot of resources to help not just the patient, but the family as well.
posted by youdontknowme at 1:17 PM on January 22, 2015

If your spouse has a term life insurance policy, you may be able to access some portion of the benefit in advance of his death. Typical contracts have an advance benefit provision that allows the insured, when diagnosed with a terminal illness, to get half or more of the death benefit before they die.

If your finances will be tight, or if you want to take some time off as a family now, it can be a godsend to get access to those funds.
posted by Coffeemate at 9:28 AM on January 23, 2015

I just had a nightmare and a half dealing with my parents' IRA. Essentially, I did every single thing right regarding beneficiary change forms--the bank said they never got it. Also, any historical data was shredded per their retention policy so I had no proof of transfering the IRA into an inherited IRA and had to cash it out w/ heavy taxes.

In short, retirement funds are not covered by wills nor trusts. They are covered by the beneficiary paperwork that goes with them. Absolutely make sure you are on there as beneficiary or even change them over to primary if you can. And put your children as secondary/POD on all accounts. If you have bonds, don't forget about them too. You can request your husband's name off and put your and/or your childrens' names on them. You'll have to get them reproccessed and deposited into

Also for time off to enjoy things, friends of ours started a 'go fund me' online to ensure that the parents of a terminally ill child could take time off to be as a family. I know it seems tacky but perhaps a friend will do this for you. People donated $ doesn't matter. It all added up and allowed 2 parents and their 2 healthy daughters be with the terminal child before and while she died. It also gave them time off to mourn and regroup as a family. You will need this 'after' time as well. Not only to sort out the estate stress but your feelings.

I'm so sorry for what you are going through.
posted by stormpooper at 10:38 AM on January 23, 2015

It sounds like it's not quite time for hospice yet, but you can call one up and ask them questions--a hospice social worker or someone else on the team might have suggestions about things to think about now in preparation. There is info available online about hospice in general, and if you memail me I am happy to answer questions (I'm a hospice nurse). I am so sorry for what you're going through, and whatever you decide is the best way to get through it is just fine. If the gym sounds better than therapy, go for it. Good luck, best wishes, those phrases sound so trite, but we out here in meta-land do wish you kindness and support.
posted by eggkeeper at 3:49 PM on January 26, 2015

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