things we've learned

I've deleted the very end of this post. Though I do think it's important and I think it's something that needs to be fixed in the "funeral" business, I was barely able to write it, and therefore I would imagine that it would be nearly impossible for some people to read. Sometimes I forget that this is not just our family journal - this is a way for people to keep in touch - a way for people who love us and loved Rico to check in. The ending details an experience we had when making his final arrangements. If you think it would be helpful for you to read or understand, or if you might be in a position to change things - I would be happy to share it with you, but for now, it's not here. The post ends abruptly because I didn't know how to cut off our list any other way. Sorry about that. (Edit - I've added it back to the bottom of the post, now that it's not at the top of our feed)

We'll never stop learning from Rico - from this entire beautiful nightmare of knowing him, loving him, losing him - but there a few things we've already figured out. 

We realize that we are just one story - just one version of how things played out - but there are four of us, and we've come to a consensus about a few things. This list isn't a how-to, it's not meant to be a critique of how people come together - just a few things the kids and I have said we want to remember when then shoe is on the other foot and we're the ones reaching out.  We are INDESCRIBABLY grateful for ALL of the ways that people showed up. We are just five people and just one story. This is a blog to keep people updated, but it is also a family journal and where we keep things we want to remember. If this stuff is hard for you, you probably should skip this post.  Seriously - there are some things.

I'll start with the easy stuff.

1) Cards - thanks for sending them. I read them to Rico and he loved knowing his friends were thinking of him. His favorites were the ones that reminded him of fun memories. My two favorites were the ones that said "You know - what is there to say?" and "F^#king f^#k f^#k f^#kedy f^#k f^#k." 

We keep that one in a place of honor.

Also - if you send a gift - a memorial - a return address is super helpful. Writing thank you notes right now is tricky, and I know people would understand if we didn't, but it's still something I'm working on. If I can't immediately find your address online - you may have to consider this your note. We are super grateful for the love you've all shown us - we really really are.

2) Meal trains. Best thing to happen to a family who is still in shock and can't even begin to formulate a grocery list. I'm not sure if we are light eaters, or people are just suuuuuper generous, but we did have a lot of food waste because people just gave huge servings. We're usually a little more earth conscious - but we also loved the disposable containers and paper plates. We lived off paper plates for the last three months.

People also dropped off a LOT of sweets - cookies, brownies, candy, donuts. All good things, and handy when people stopped in to visit, but we really craved cheese and crackers, olives, fruit, vegetables - stuff that was super easy to grab and eat, but didn't contribute to our genetic predisposition to diabetes.

3) Sometimes people say stupid things. They just do. Sometimes words slip out, sometimes people just aren't very eloquent. When your dad has a terminal brain tumor nobody knows what to say - there are no good words. On the flip side,  nobody wants to hear -  Cheer up;  Be grateful for the time you have with him; God has a plan;  or this winner -  Ug, this homework gives me cancer. 

But it's ok. It's ok that they say stupid things - because a) they likely know they are stupid too and instantly regret saying them, and  b) the fact that they're saying anything at all means that they are with you - they are present and making time to surround you with their good intentions and love. So try not to get defensive - give them some grace. (We can't all think on our feet as fast as Noah's "It's a funeral - have fun for pete's sake!")

4) On the topic of funerals and what to say/not say: Right now nobody in my family respond honestly to "How are you? - No reallllllly how are you?" 

As a former kid whose been to wayyyyy to many funerals - and as a parent of three who have confirmed my thoughts - these are things that may be comforting or helpful to say to a kid at a funeral:

"Your dad sure did love you."

"I want to tell you this funny story about your dad . . . "

"Your dad was so proud that time you . . ."

"You are a great artist/mathematician/baker, just like your dad."

IF you happen to be in a place where you feel like the kid might actually want to talk and share with you - asking how they feel rarely works, but you can try things like:

"What was the best trip you ever took with your dad?"

"Do you remember a time that your dad really made you laugh?"

"Are there any foods that you and your dad both really loved?"

Along those lines, there are helpful things to say to adults as well. My favorites are the Rico stories, hearing how much he loved us and of course (from the same person who sent the card) "My incontinent, geriatric shitzu crossed the rainbow bridge nine years ago today so I know exactly how you feel . . . . . ha ha ha ha  . . . . . omg this f^#king sucks." 

In short - we want to talk about him - not ourselves.

5) Showing up matters. In whatever way you can, show up. Even if you say or ask the "wrong" thing - they'll remember you were there. The kids and I will hold in our hearts those special people who knew us and loved us and cared for their dad until the final note was sung, the final toast was given. You will always be special to us because you were there - in whatever way you could be. 

6) What do you need? is a loaded question. I mean aside from the obvious - a cure for brain cancer, more time, a cloning machine - what we need varies from minute to minute. One day it was a mousetrap, then help with our taxes. The next it was an unsweetened tea from McDonalds (all three of which magically appeared somehow).  We don't know what we need. Rico was the one who was diagnosed with a cognitive decline, but we all had it. The short answer would be - if you see something that needs doing, just do it. This happened to us several times - I came home to find a friend in my kitchen doing the dishes; an army of people descended on our lawn to take care of our yard when I couldn't leave Rico's side; the neighbor who just stopped to take our dog for a walk; or countless things that probably got done by a good samaritan when I was emotionally oblivious.

The only thing I really know that we need is this: when the proverbial "dust settles" for everyone else - ours will still be a tornado. The storm will never really end and will just become part of the fabric of who we are. So in a few months, when others have moved on, please reach out to us, invite us, and then keep doing it. That is what we need - we need you to check in later.

7) Hospice care does not mean that someone comes into your home and takes care of the sick person for you. It means someone from hospice comes in every other day to make sure you have the meds you need; checks vitals; helps with sponge baths and repositioning if the patient and caregiver are unable to do so alone; and orders any special equipment like beds, commodes, chucks and wheelchairs. 

Our hospice team was spectacular. They answered all of our questions; told us what to expect (even when we didn't want to hear it); followed us through to the very end; and helped lift me off of the concrete when the van finally took him away. In-home hospice care is typically covered by insurance and therefore "free." The work they do is incredible.

However, if there comes a time when you are unable to care for the person at home, residential hospice is an option - but a very different set up. First of all, the decision to move someone out of the home is emotionally excruciating. It's another tremendous loss on your way to the final countdown and for me it felt like I had failed him.  In addition it a huge financial consideration, as it is typically NOT covered by insurance or medicare, and is very expensive. The place we chose charged $14,000 per month. This did not include the medications or extra service that his regular hospice team was providing (they continued their care regardless of where he was living). I honestly did not know how we would pay for it - but was assured that "they can put a lien on the house to help."  We did not end up needing that, but we are fortunate.

If someone says they are going into hospice care it is important to know what kind so you can support them in the most appropriate ways. I do know that Rico's last 12 days were beautiful and it was the right choice for us, but also know that we were privileged to be able to do it.

8) This is the point where I'd advise you to stop reading. It has given both me and one of my children nightmares. Said kid says - "of everything that happened, this is the one horrible moment I can't get out of my mind". Same here. I'm writing it, so WE do not forget, so we can help others, maybe prepare them if need be, but you do not need to read it.

I will preface this by saying that as far as dying and cremation go - I've seen some stuff - this isn't my first rodeo. I see it as my final duty to cary the people I love to the very very very end. Maybe it's my own childhood trauma. Maybe it's when that 2nd grade bitch Missy told me that she got to watch my mom get cremated and I "must not have been invited"; maybe it's just because my love will not allow me to let go of anything yet - I don't know. But I've done some things. (Seriously - this is your last warning)

I've zipped up the body bag. I've asked them to take the corpse out of cold storage, because they weren't moving fast enough on the cremation and I didn't want anybody to spend the whole day alone in a creepy funeral home. I've settled a box full of fresh ashes into Byerly's cart because leaving them in the car on the way home did not seem ok. I've loaded ashes into the urn myself. I've had the funeral director take me to the still warm oven where it just happened, so I could see the very very last place they had been before they were back in my arms.  I put my hand in an oven.

Point being - I'm not easily swayed by doing what needs to be done - or even some stuff that makes the funeral guy go "this is a first".

But this one got me.

I do realize that if people pre-arrange their funerals that this situation could be avoided (though still don't get why it's necessary). I also realize that this is NOT just the funeral home we used. This is all of them. But I think it is the most disgustingly predatory and hurtful thing to do to a family hours after a loved one dies - which is why I'm mentioning it. If you are going through this, maybe being forewarned will help you. If you are a person who can make this stop happening - please do. If you just want to be borderline outraged with me, that's also fine. If you think this is ok - and I'm sure there must be some reason why this happens - then please let me know, so I can stop dwelling on it.

I am not using exact quotes for this interaction. The funeral directors are good guys and I'm not trying to disparage that based on something that I'm told every funeral home does. I just think it's a really horrible practice and should be stopped universally. So the quotes are not real - but the conversation is (oh except for the IKEA part - that legit happened).

The day after Rico died - not even 15 hours after I held him in my arms - we needed to go to the funeral home. This has to be done relatively quickly for reasons that are obvious and do not need to be elaborated on here. 

Rico knew he wanted to be cremated, and we were led into a room to discuss the paperwork and financial details. We begin with small talk which at this point seems very small indeed: Where  the kid goes to college - if they went to the homecoming game - so sorry for your loss - blah, blah blah.

The director begins to discuss the financial aspect of our plans, and then leads right into this:

"The state of Minnesota requires that we utilize a container for the burning of human remains. we can't just put the body directly on the stone, they need to be in something." 

Already I did not need to know this.  Just give me the bill and get on with it. 

"There are individual fees for x, y and z." Again - I don't need this itemized, it's not like we have any options here.

"Oh - but you do. Exactly how much do you love your husband?" 

(Now would be a good time to remind you that none of these are exact quotes - or even close, just my and my kid's interpretation of the interaction)

The full color catalog comes out. It is open to a page with four options.

The options of containers that I want to go up in flames with him.

Why these options exist is beyond me. It would be enough to say, "This is what we charge - period". I'd never even have to know about the containers. Because I will tell you this - no matter what you think you're made of - no matter what you think you've imagined, when you see that page, you will find yourself visualizing exactly what is going to happen to that box and everything in it. At least we did. It's like finding a new coat in a catalog and imagining how you'd look in it. It's exactly like that - exactly.

There are four options.

The pizza box is $200. Yes it is just a cardboard box with a few holes in the side. I don't know why there are holes. I can't bring myself to ask, because I'm sure the answer will just make this whole thing worse.

The painted pizza box is $500. "It's the same box," we're told, "it's just painted dark brown to look nicer." You know more like fancy takeout than Dominos.  Also is paint $300?

The wood box is $800. "It's wood, but not real wood," he says.

"Like Ikea wood?"

"Yes . .  but no, not as nice as Ikea."

Option four is a baby blue satin-lined Cinderella coffin for over $3000. "The beautiful silver handles don't actually burn in the oven but that's ok - because they are recycled." Whew - thank goodness.

He doesn't even finish showing us these and I feel my eyes shut and my head shake and I can hear myself shouting "Not the pizza box, not the pizza box, not the pizza box!" (At least two of these were said to drown out Rico's voice in my brain saying  - obviously the pizza box - choose the pizza box.)

I look at my kid. We are both furious. Why does someone think this is ok? Why is this the time to be fleecing a grieving family? Is anytime a good time to do that?

But of course, I do not choose the pizza box. He's everything I love about living and they've just asked me to put a price on the last place I will ever set his body. 

I am sick to my stomach and as soon as the director leaves to find some paperwork downstairs I begin combing through the rooms, searching for him to tell him I am sorry that it wasn't the Cinderella box, but also sorry that I spent extra money on something that will literally go up in flames. I find his room. I can tell it's the room for several reasons, but. mostly because it's clear I am not supposed to be there. I don't go in, because at the last second I realize that he may not be the only one there. So I talk to him through the door.

When the director comes back I am perched on the couch just like I never left. I ask him to bring Rico back out to me. He does. He is still covered with the blanket Kaia made when she was 12. My kid and I sit there with him and say the last things we will ever say while we see his face.

I know that eventually I will have to leave him, but no final words seem right.

But then . . .

On our very first date - the first one ever - we knew. We knew that everything we'd ever done had led us to each other. He had to head back to Connecticut, and I had to go back to Minnesota. We had to untangle our fingers and pry our hands apart. It felt impossible to let go. But then he kissed my forehead and said, "This is forever. There is no love like this. No love like this."

So I do the same. I take his face in my hands. I kiss his forehead and whisper "It's forever - there is no love like this." And that is how I say goodbye to him.

Of course that is not really how it ends. It ends with a party - a beautiful event surrounded by beautiful people who loved him. But that's not really how it ends either - it ends with me wearing his t-shirts and crying in bed every night. But I guess even that's not really how it ends - it ends with the four of us living and loving each other and becoming whomever we will be because of who he was to us.

If you've read all of this - thank you for putting up with the crazy that seems to be coming out of me lately. I'm afraid there is a lot of it - and I am so grateful to have you surrounding us all.