Tag: finances

Complicated

tragerstreitLeave a comment

“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett

“Complicated.”

It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.

Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.

They’re both right.

…It’s complicated.

There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.

There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.

Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.

My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.

It was complicated.

We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.

I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.

It’s complicated.

Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.

Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.

I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.

All my life, and now so more than ever, I am very, very complicated.

Legal

tragerstreit3 Comments

Man, real life is just NOT going to give me a break lately! Sorry! But it’s also awesome that I’m still able to DO so much and keep up with what I’m being asked to do. So I will take this all optimistically.

Anyway. The lawyer.

First of all, we used the Crowdrise funds to pay for it, which I felt weird about, but that’s precisely what that fund is for. So it was $650 NOT out of my pocket. Yay! Thank you everyone who donated to that. I love you. For reals. I’ve put off this legal appointment for a long time because I simply couldn’t afford it.

We were recommended to use a particular elder care lawyer, who had a lot of dealings with ALS patients. For lack of knowing what the hell we were doing anyway, we went with him. He had the stereotypical swanky corner office with floor to ceiling windows, nice couches. I was completely intimidated, I won’t lie. Everything about the place said “You can’t afford this.”

We explained what my situation was. Dying of ALS, need to get my affairs in order. We explained what we wanted. Answers on particular laws and financial advice. I’d filled out a questionnaire (why does that word have two Ns? Millionaire doesn’t. Weird.) that detailed my pathetic assets. Which basically amounted to the life insurance policy through my employer and a little bit of 401k, and my house. Which I still owe almost everything on because I’ve only lived there a year.

(Goddammit. One fucking year. FUCK!)

I told him I was planning to sell the house and buy something single-story. He looked at me like I was on drugs and told me he would absolutely not advise buying another house. I’m not going to get any financial benefit out of it, he told me. It’s going to be nothing but a money sink. Consider renting. There are laws that say landlords HAVE to let you remodel to be ADA compliant. There’s subsidized disabled housing, too, but the wait list is like 2 years and I’m not even actually disabled yet so I can’t even START that process. So why he brought it up I don’t know.

Danielle (my bestie and primary caregiver to be) and Gecko (my brother and finance manager when I die) were with me, and both had a lot of very good questions. Danielle asked about Medicare and Medicaid, what they would cover, how would we/what will be appropriate procedures to move me to assisted care living, ten fifteen twenty years down the road when I need it?

He looked genuinely surprised. “Ten years? Did the doctor give you that long?”

Um. “I have an extremely slow progression,” I told him. “Two years since I noticed a problem and I’m still walking.”

“OH. Oh okay. Okay. Buying another house is NOT so far fetched,” he told me. “Usually when people come to me, they have a small handful of years left. Three maybe. Buying a house you’re only going to have for three years is not advised, but you’ll get benefit out of it if you live there for ten.”

We talked about in-home care vs assisted living. How much worth you have and how much you have to use up before Medicaid kicks in. Living on SSI and how much money you get to keep (hint: HARDLY ANYTHING). In assisted living? It was like $20. That’s all you get. They take care of your housing and food and medical care, sure, but entertainment? Clothes? Toiletries? if you have a cat? You’d better figure it out because $20 is all you get. If you live at home you get to keep more of it, but of course you have to deal with mortgage and bills and food on your own. It’s REALLY not a lot.

So, hope you’re independently wealthy! Cause otherwise your life is going to be small and hollow. Sorry your disease sucks, but let’s make it worse by bogging you down with money woes and bureaucracy and complicated decisions! What can you afford? Nothing! A small bed in the corner of a nursing home somewhere where we’ll tuck you away there until you die.

We talked about executors of estate, who I want to have as my finance controller, who I want to be in charge of medical decisions. He gathered information and after the appointment he mailed me papers to certify all of that. He told me to get my living will in order and spread copies of that to everyone. He also said we need to draw up my will to state who gets what portion of what assets I’ll have, and I can attach a sheet later dividing up physical goods.

I kind of froze. Who gets what? I don’t fucking know. I threw out some percentiles, and Danielle insisted she did not need to be figured in there anywhere but if anyone deserves ANYTHING when I die then holy fucking SHIT is it Danielle. My brother Justin a close second. Gecko third, for being willing to deal with all my debts and shit when I’m dead.

Though I DID find out that when I die, Gecko will NOT be responsible for dealing with my debts. With very small exceptions (that I do not have), those debts get written off when I die. “I’m not suggesting you go run up your credit cards,” he cautioned with a shrug. “But.”

When we left, my brain was full of doom and money and gloom and responsibility and numbers, so many fucking numbers. What’s fair. What’s right. What’s necessary. Next steps. Long term, but not long long term because you never know. I was keenly aware of my situation. How little resources I have. How much money it’s going to take to keep me alive. How little time I have to save any of it.

I was completely overwhelmed, and really wishing I drank at all.

It’s a fucking complicated thing, dying. And it seriously is unfair that this diagnosis does not come with a lawyer, an administrative assistant, and a kitten.

Asking

tragerstreitLeave a comment

The hardest thing about my diagnosis so far has not been coming to terms with my own mortality.

It’s been coming to terms with allowing myself to ask for help.

To say I’m fiercely independent is a bit of an understatement. Its source is two-fold – I really hate imposing on other people for things that only benefit me, and I have a stupid deep-seated need to prove to the world that I can do it by myself, thank you. It makes it harder than necessary to get things done, sometimes. I’ll take two hours to show up to a party because I don’t want to ask another friend to drive ten minutes out of his way to pick me up when he goes. I’ll load myself up like a pack mule and walk home rather than ask a coworker “hey, can you swing me by the store tonight?” even though they’ve TOLD me they’re more than willing.

Two true stories:

I had a coworker friend who waited in his car in the parking lot while I ran in for some groceries, because I’d insisted I could walk to the store later, it’s fine, I don’t want to impose on you, I might take forever, it’s okay really, I can do this – so he insisted on taking me to the store and waited outside so I didn’t feel like he was hovering over me and rushing me while I picked up the things I needed. He’s super nice and I still feel bad about that.

My boyfriend at the time once berated me because I occasionally asked him for rides to the store – we’d been dating for over a year, he was living with me so the grocery runs were for our mutual benefit, and goddammit YES I WILL GIVE YOU A RIDE, just tell me we need to go to the store, woman.

My diagnosis has come with a very humbling lesson of “No, you CAN’T do it by yourself, actually.”

The truth is that I can’t carry boxes up the stairs anymore. I can’t walk the mile to and from the bus twice a day, every day. I have had to learn how to ask for help. My outer circles have been amazing at offering assistance – I’ve been told that friends are willing to come over and scoop my freaking litter box twice a week, if I want to set up a schedule. Grocery runs. Yard work. whatever it is, just say, and someone will help me do it. I just have to let them help.

I just have to ask.

The “I don’t want to impose” part of me is appalled at this turn of events, of course. Yes, they’re willing and they say they’re happy to do it, but…they’re going out of their way! For me! Just to take me to the stupid store! I don’t deserve to trouble them so much! The “I’m independent” part of me is learning to shut up as it’s proven time and again that not only is accepting help not a bad thing, it’s becoming mandatory. It’s dangerous, because I’m also lazy by nature, and so the temptation to just not do the things I don’t like to do in the name of saving spoons or whatever other excuse is strong. I hate mopping the floor. And I’ve got people willing to do it. But I CAN still mop the floor, so that independent side of me makes me do it, while I can, because the imposition side of me is mortified at the thought of making someone else clean up the cat puke. Eventually I won’t have the strength to stand up long enough to mop my floor. So I’ll have to ask.

Okay.

So. The reason this is on my mind today, is that Danielle, my best friend and main babe, has set up a fundraising site for me. And she’s demanded asked that I link it here. This is a thing that is purely for me, to help with upcoming medical expenses and to cross a few things off of my bucket list while I’m still able to do them. The truth is, being sick in America is very, very expensive. Moving house is expensive. Buying and renovating a house for wheelchair access is expensive. Vacations are expensive. And while I have a job – a good job – I’m keeping afloat. But the time will come, sooner than I want to admit, that I have to leave that job and figure out how I’m going to live for the rest of my life on 60% of my income. ALSA says that it takes $200,000 a year to care for a person with ALS. That’s substantially more than the $700 or so I’ll be getting a month from SSI when I’m unable to work. I just can’t do it.

And so I’m asking.

Here is my fundraising site.

Danielle told me that I have her permission to tell you guys that she made me do this. And she did; this is something I’d never have done on my own. And I’m incredibly grateful to her, because I still haven’t gotten the hang of this whole “take care of yourself first and let people help” thing, and she’s been an excellent coach and an amazing guardian in that respect. She’s been really amazingly good for me. But it’s not entirely under duress; I’m also..just…asking. I admit I can’t be completely independent, and I must impose on the kindness of my friends, family, and complete strangers on the internet. I’ll put it up on the sidebar over there. I’d be grateful if you could help.

I’m asking if you can.