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[theatremom]

I generally just lurk, but I've looked and I can't find a thread that seems relevant to my current situation. I may be over-thinking this, but I could really use some advice.

My spouse has recently been diagnosed with dilated cardiomyopathy. A month ago, he spent 8 days in the hospital with a double-whammy of congestive heart failure and chronic renal disease. With some extreme good luck and a lot of extended-family support, I managed his hospitalization without missing any classes or crucial meetings, so I chose not to mention anything about his illness to my department chair. (Well, to anyone at work, really).

However, the prognosis for these diseases is not good: cardiomyopathy has a 50% mortality rate in the first 5 years after diagnosis, and renal disease isn’t much better.  While I will have the summer free of teaching responsibilities, fall semester is right around the corner, and frankly, his illnesses are going to require a more long-term plan than the day-by-day, catch-as-can method  I used for his initial hospitalization. It’s great to have family in the area, but at the end of the day, I’m the one he’s leaning on. I want to be with him, and I want to be at work. I feel torn in two most of the time.

I am unsure about how, when, and how much I should disclose to my chair. He's generally supportive but as this is only my second year on the tenure-track, I haven't had much of a chance to feel him out about serious issues. There is a strong possibility of future hospitalizations, and if that happens, I certainly, I don't want my spouse's illness to be completely new information, but I also don't want to be "that person" who can't do this or take that responsibility because of a sick family member. Worse, I don't want people deciding not to offer me opportunities because I might have family responsibilities that might interfere.

The spouse is not yet 50, by the way, and has, until this year, been extremely healthy. We weren’t expecting anything like this to happen, and have both been caught off-guard.

Any thoughts?

[systeme_d_]

I am so sorry to hear of your spouse's illness.

My partner is chronically ill, and has been since my second year on the tenure track as well.  I have always been on very good terms with my chair, and I was quite forthcoming about my partner's illness from the beginning.  I have never heard of "that person" you describe, nor did my department treat me as such.

I would advise you to do the same.  Unless your department is completely dysfunctional, your colleagues will want to be helpful when you are in need of help, whether it be covering a class, or something else.

I'm not sure how to put this delicately, but I am going to say it anyway. If, in the future, caregiving becomes difficult and time-consuming, you might need to delay going up for tenure by a year.  Your chair's early knowledge of your situation can do nothing but help you if such a situation should arise.

My best wishes to you and to your spouse.

[msmicrobe]

I am sorry you are both facing this right now.

Is there a trusted person in the department you can get insight from?

My first instinct is to go to your chair to discuss ways to be proactive about the coming terms. You can flat out state that you want to continue to be involved in the department and be an actively contributing member of the team... and you want his input on how to best make that happen.

You can make some suggestions for ways to manage unexpected absences ahead of time and clear those with him... more to demonstrate the ways you are minimizing the impact spouse's illness has on your career. For example, you may suggest recording some lectures ahead of time (maybe one or two for each unit of exam material) and have them ready to go in the event of an emergency.

By going in now, before you are in crisis mode, you can present your situation in a very professional light. You can have some ideas to give him and ask for others, stressing that you don't expect there to be a long periods of absence, but that you want to be proactive in case something unexpected arises.

Good luck to you and spouse as you adjust to this huge change in your lives. And remember... 50% mortality rate means 50% survival rate, too. Those numbers are not great when its your loved one, but they could be much worse. (And don't hesitate to get second and third opinions, either.)

Keep us posted.

[theatremom]

Thanks for the advice and good wishes. I think a large part of my reluctance to talk to my chair is just denial -- I don't want my spouse to be sick, and if I don't tell anyone about it...well, then, it really isn't true, is it? So of course I will schedule an appointment with my chair and talk to him as openly and frankly as I can. Being proactive is obviously going to be far better in the long run than waiting until the next crisis.

My department isn't at all dysfunctional, but it is small, and like a lot of small departments, people get slotted into particular roles quickly, and changing them can be difficult. I don't think my colleagues will think any less of me because of my situation, but if they get accustomed to dividing up part of the workload without me, it may take some serious effort on my part to get them to change. Maybe. Then again, maybe I'm just freaking out over nothing.

This is the first year that I've felt like I was actually catching on to the pace of the tenure-track, and I've been enjoying myself immensely. I directed a show, designed some specialty make-up for another show, and just generally have felt like I was in calmer waters after several years as an adjunct. Now it appears I have another wrinkle to adjust to.

[systeme_d_]

I'm in a (very!) small department too, Theatremom, and really, there have been no negative repercussions at all for me.

I'm glad to hear you'll be talking to your chair, and I completely understand the denial aspect of the situation.

Hang in there!

[epinonymous]

Dear Theatremom-

I am so sorry that you and your family are going through this. You have gotten lots of suggestions regarding talking to your department, but I completely understand your reluctance to directly confront this issue with your department head. I would guess that it is a combination of both "magical thinking" and not wanting to be a "problem" before it is necessary.

When I had my health issue, I matter-of-factly and very dryly wrote my dean and department head. I focused on being as unemotional about it as possible and also not spending lots of time discussing it with my colleagues. I didn't make a "big deal" about my chemo treatments, and just adjusted my office hours to account for them. In other words, I did what I needed to do to take care of my health without calling attention to the fact. As someone on the first year of the tenure track, my goal was to be a no-drama faculty member.

I have a prognosis that is probably similar to your husbands (~40% 5 year survival rate). For right now, I am doing really well, but I know in the future that may not be the case. But, no matter what, when it comes to many serious illnesses (not all), in most cases it is something that plays out over a period of time - and that may be the case with your husband. I also know that there is a good chance (probably greater than 60%) that I won't be in that 40%, and I hold onto that hope. I know it is difficult to do in early stages of diagnosis, but in the long run I have taken the approach that as long as I am doing ok, I am going to use work as my refuge from my illness. I don't know and wouldn't presume to recommend that can be the case for you, but it has worked out well for me.

BUT - I hope you are able to find some emotional (and logistical) support outside of work. People with whom you can cry, and who can be leaned on for help as this process continues. For me it has been friends from my previous uni and some neighbors.

Once again, I am so sorry about your husband's illness, and my best wishes for your future.

[dellaroux]

My only (narrative, N=1)  input is that my father had his first CM at age 55 and is about to celebrate his 85th birthday.

He's a pain to deal with because he overeats and won't exercise as directed, he has probably had two events (that I know of) since then and has several other complications now (has had bouts with pancreatitis and was later diagnosed with adult-onset diabetes.)

He's also stubborn about some things (see the "caring for elderly parents" thread about family go-rounds with his driving, which I think are now more satisfactorily resolved, at least in part), etc.

This may or may not relate at all to your situation, but once he'd been out of the hospital for awhile, and began slowly to regain more to most of his functioning, he worked for 20 years more before retiring. He had a good insurance plan, thankfully, and my mom does more for him (cooks without salt) than he does for himself (puts salt on things without tasting them at the table in front of her...) but by and large they've accommodated it.

She worked as a secretary in the local Jr. Hi. school for many years, so in one sense wasn't in anything like the level of competitive career context you are facing, but she essentially became the sole breadwinner for several years because of his disability.

His job had just been re-configured to require more travel, and he had to quit because they were concerned about his condition if he were going to be on the road all the time. When the insurance said he had to go back to work after four years, it took him awhile to find a job he could do--finally found a state-related situation that was actually very good for him, but it was very tenuous for a long time, and I think my mom was very scared for much of that time.

But they're both turning 85, within the next two weeks, and doing decently for all that.

So take whatever is helpful from it, as you can...and all good thoughts for whatever happens.

[theatremom]

My only (narrative, N=1)  input is that my father had his first CM at age 55 and is about to celebrate his 85th birthday.

That may be one of the most hopeful sentences I've read in the past five weeks.

I am trying to be a "no drama" faculty member, and to a large extent work is -- and always has been -- my refuge. I like that there is at least one place I can go every day where I can hide out from a future that feels frighteningly uncertain.

I'm also in a bad place for making serious or long-term decisions; too much of what's rattling around in my brain is being fueled by exhaustion and anxiety. Fortunately, I'm not teaching this summer, although I am coordinating a "drama camp" for elementary and middle-school students in the area. Chances are I won’t even run into my chair until right before fall semester starts. Tentatively, I’m planning on talking to him then, which will give me the summer to adjust to our new “normal.”

Thanks so much for the advice and for the good wishes.

[glowdart]

I'm so sorry to hear about your spouse's diagnosis, theatremom. 

Something practical to consider:  how comfortable are you with your school's course management software, and can you move any of your classes on-line for a week or two if need be?  If you know that you can shift a discussion or lesson on-line quickly, then you might be able to relieve some of the guilt or stress about needing to attend to your spouse at a moment's notice without being a drain on your colleagues.  My colleagues and I have had to do this quite a bit this year for a variety of events, and the students have rallied without much difficulty, in part because we use the system for other course basics (syllabus, papers), so they have at least visited the site.  More importantly, it removes a potential stressor from the "how do I deal with this" category to the "okay, that's the plan if I need it" category. 

Big hugs to you both. 

[theatremom]

I'm fairly familiar with our CMS, having been asked to teach one of our two "hybrid" courses this past spring (2/3 online, 1/3 face to face). Some course material and assignments will translate easily to an online format. Others are more problematic, particuarly classes that have a performance element. Still, I can set up some course content to be managed online, if necessary, with the idea that if an emergency should arise during a performance segment of class, one of the other faculty could step in to help out. It's definitely something to consider.

It's been a rotten day. Spouse needs surgery (not cardiac, but a related condition that is exacerbating the cardiac condition), and I've been going around and around with the hospital over payment plans. They're estimating a bill in excess of $24,000 and feel that our financial responsibility is going to be in the neighborhood of $4500. Which they want upfront. All of it. Before they'll schedule the surgery.  We don't have $4500, and no matter how many times I've explained that and offered to pay what I can now and to enter into a reasonable payment plan, they're not listening.

I've dealt with barely-coherent, grade-grubbing freshmen that are more willing to engage in discussion and compromise than these people. I'm ready to beat my head into a wall.

Thanks again for the advice.

[lolar2]

I just saw this. A lawyer friend of mine runs a nonprofit organization to help people with chronic and terminal illnesses deal with insurance companies and hospital payments. If you haven't been able to resolve things with the hospital yet, the web address is http://www.advocacyforpatients.org.

[theatremom]

Thanks! I skimmed the site -- looks like a ton of helpful information. We're meeting with the hospital administration tomorrow, so hopefully, we can work something out.

Thanks again.

[epinonymous]

Theatremom - Just wanted to chime in and wish you teh best of luck in dealing with the medical establishment. It really is absolutely rotten that you should have to address financial issues at this point in time. It just stinks.

Sending you and your spouse best wishes for dealing with this and the upcoming surgery.

[dellaroux]

I agree....stinky, stupid, awful and dumb.

My folks had pretty good insurance and state/fed coverage from both working in state, industry, or educational jobs most of their lives. But not all have that, and it shouldn't make the difference it does.

One friend deliberately took out bankruptcy, filed for unemployment for him, and for welfare for herself, to get some of the treatments covered for her husband's leukemia that were otherwise not going to get covered.

Their state's medicare/medicaid structure was a bit more generous, although they had some go-rounds with that as well.

Not pretty but when you're in fighting mode you do what works. I hope that won't be necessary for you but I think the investigation of all options (including free care, such as that exists in hospitals anymore, and loans, if you can get them) just to get him stablized is worthwhile.

Once he's in a better state to think things through with you, you can then discuss other options with a better sense of the possibilities.

But healthcare seems to have lost the "care" part, and it's not fair at all that you have to push for it. 

[parispundit]

First of all, I'm very sorry to hear this.

Second, if you haven't already, go read your institution's employee handbook for what it says about things like leave to be with ill family members, and also for what it may say about the policy on cash advances on salary if you need $ to pay off the hospital. Any other hospital you might go to? Even if it is an hour further away, it MIGHT be worth it.

Third, remember you are not superwoman, and do not try to be.