Is there anything we can do?

Man, just let me know if there’s anything we can do…

You know, if I had a nickel for every time I heard that phrase I’d probably be a thousandaire by now. People wanting to help, or at least saying they want to help… And I understand that! I bet I say that phrase to friends three times a week myself.

My wife is ill. She’s been very ill for a number of years now. There’s no cure, she’s going to die (just like the rest of us, only a bit quicker). She has a number of problems, notably CVID, Sjogren’s Syndrome, and uncontrolled asthma. The three are related, and each one of the three illnesses also brings along a host of other secondary illnesses along with it.

Push comes to shove, my Beloved  Wifey is disabled, and there’s a good chance she may pass away before her time. We struggle to keep her working – her HR department keeps threatening to fire her. If she doesn’t go to work, she loses her job, we both lose our insurance. If she goes on disability it will take two years before they pick up her insurance again.

We’ve refinanced our mortgage, we’re paying ahead at the funeral home… She can’t get life insurance, so we’re trying to make things as comfortable as possible for her over the next few years and at the same time find a way I can live here on our acreage once she’s gone.

Beloved Wifey can go to work sometimes. Other times she has to stay here at home for days or weeks on end. We never know. Day to day. Hour to hour. She misses work, I need to make up her income somehow on my own. I’ve grown used to 18 hour working days over the years.

So, as my wife’s primary caretaker, when friends say, “just let us know if there’s anything to do,” it makes me flinch a little. “Oh, we’ll let you know if we need anything,” we always say. Then we put it out of our mind.

People often say things they don’t mean. And we know it.

“Is there anything we can do to help?” Yes, can you clean the upstairs bathroom? We haven’t had time. The tub up there, the drain doesn’t close right. And we live in the country, so there are always dead flies on the windowsills no matter what we do. I’d get it myself, but I need to be tending to my customers – we need all the money we can get.

“Just let us know if there’s anything we can do.” Sure, it’s no secret we’ve been working on the basement for the last four years – we still need help getting the lights up, the ceiling done, some carpet down on the floor, some sheetrock needs to be hung… My brother-in-law is helping, but his time is limited. We can’t enhance our income by doing studio photo shoots until the studio is finished, and we can’t stop paying high utility bills until we can get a couple doors up to stop the draft… The basement is a liability right now, but it could be making me money – if I can find a way to get it finished. But I’ll never ask.

“If you ever need anything, just let us know!” I need to be working, to be sitting in front of the computer, to be learning a new technique with my camera… I need to be making money. But I don’t have time to take care of Beloved Wifey, tend to the dogs, AND get my ten hours of work done today. I could sure use some help – just someone to take the garbage out and feed the dogs, maybe throw the frisbee for SuperPup Buttercup.

“I really wish we could do more.” Well, I have twelve hours of work to do, and I also have four hours of laundry to get through, two dogs to tend to, and a sick wife to help – it’d sure help if you could just fold the laundry for me… Or straighten our prop room so I can find stuff when I need it in the spring. Anything. Any help is appreciated. Any little thing.

But those things are difficult to say. How does a person admit that he can’t care for his family without help? “Nah, we’re doing fine.” I have a grove full of deadwood that I can’t find time to deal with. I’ve offered to hire people to come and take the firewood away if they’d just cut it and take it… But that never works – I’ll be out in the woods for a good ten hours this weekend trying to clear the winter deadwood away, and another ten hours trimming the trees outside my grove so the neighboring farmer can get through with this equipment this spring. Those are twenty hours I could use working, or spending time with Beloved Wifey. But how do I say this?

How do I say that I really could use a load of groceries from town? It’s easier for me, somehow, to take three hours off work to go to the store myself then admit I don’t have time – then make up those three hours by working between two and five in the morning. (Five is when I normally get up so I can get a few hours work done before Wifey and pups wake up and demand attention.)

If you really do wish to help, we’d be VERY happy to accept – but it’s difficult for us to ask.

Do you have a few hours to help pull deadwood out of the grove? I’d be more than happy to let you! That gives me that much more time to catch up on work… Please don’t ask, I’ll say I can do it on my own. Just come and do it. I have a chain sharpener. Are you coming from town? If you ask, we’ll say we don’t need anything. In truth I’d be happy to pay for someone to grab some staples from the store… We’re always out of dog food, we can always use “real” food (we live on English muffins and frozen Totinos pizzas – everything else takes too long to cook. Every minute I spend away from my computer is a minute I’m not making money to help Wifey. Or spending time WITH Wifey.

If Beloved Wifey should need to go on disability, we’ll need to find means to pay for both our insurance coverages for a minimum of two years before Medicaid kicks in. Refinancing, paying bills ahead – we’re doing what we can to be ready for the time. But we sure could use some advice, someone to come over and explain how this all works. To me the words of finance are may as well be ancient Latin.

“Is there anything you need?” Yeah, I need a friend to stop over with a six-pack and some funny stories before I go crazy. We need someone to figure out if we need to insulate our basement (who has time to research that sort of thing?), we need people to stop over and play with the dogs… But if you ask, we’ll be too polite, too embarrassed, to “Iowan” to accept.

So, please, just DO it. We’d appreciate it more than you could know.

2 thoughts on “Is there anything we can do?

  1. Michael Springer

    I was diagnosed with an IgG3 deficiency when I was a child, MS in 2001, adrenal insufficiency in 2011 and CVID in 2014. I have been on IVIG or SCIG since 2001. The cost for my medications and care has ranged from over $500,000 a year to about $120,000 this year.

    My insurance cap was at $2million when all of this started. I would have reached the cap by 2004 had I not decided to apply for SSDI. It took several months for my SSDI to be approved. Once I was approved for SSDI I was able to get Medicare. My wife filed for divorce the month I was approved for SSDI – I was just too much of a financial risk.

    Your wife should be able to get a statement from her immunologist that says that she is disabled. Take the immunologist’s letter to the DMV and ask for a disabled placard. Along with the placard they will give you a wallet size paper that says that you are disabled. Have your wife fill out her employer’s reasonable accommodation form. Submit the form, the statement from the immunologist and the DMV statement that says she is disabled. This should allow her to negotiate a schedule at work that will allow her to take rest periods when she is sick.

    Next, apply for SSDI. Unless she has complications, her 20 year survival rate is almost 70%. If she takes the SCIG and daily dose of antibiotics she may be able to work enough to keep the insurance policy while she waits for the SSDI to be approved.

    If the SSDI is not approved she may be able to work part time and keep her insurance. If she cannot work she can appeal the SSDI decision and ask to be included in Medicare under their catastrophic care program.

    Wait for six months and reapply for SSDI. Once she is approved for SSDI she can then purchase a secondary policy (Obama Care). At some point working will become optional but she will have coverage for her medications and medical care.

  2. HippieBoy

    …Nearly two years later… The basement still isn’t finished. I’m still trying to clear deadwood out of the grove. I still need help. We both still need help – with almost every aspect of life.

    Wifey was only able to work a few weeks after this post. She’s now unable to walk more than a few feet and needs oxygen. She has seizures. She’s so ill and weak she’s unable to get out of bed more than a few hours a day, and even then she can’t even sit at the table more than ten minutes. And we’re STILL waiting for approval from SSDI. Her long-term disability insurance company has cut her benefits. And now they’re wanting to take away both our health care insurance policies.

    But we did everything right… It wasn’t supposed to turn out this way… We planned, dammit!


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