Verbiage to get FMLA approved when care needs are yet unknown
March 27, 2015 8:40 PM   Subscribe

My mom has maybe a year to live after being diagnosed with cancer, and I want to spend more time with her than I have vacation. What do I say for the care I'm going to provide to get FMLA approved if she and her husband can physically care for herself most of her remaining time?

My 81-yo mom was recently diagnosed with a brain tumor (GBM), has had surgery, and is now in physical therapy with the expectation that she will return home. Soon after that will probably be two weeks of radiation treatment. She came out of the surgery pretty well, both mentally and physically. Doctors say the median survival for cases like hers is 12 months. She has a husband to help her with any day-to-day tasks that she can't do on her own, and I and my siblings are arranging for things like house-cleaning and cooking to take more load off.

But I want to spend more time with her than I have vacation, so I'm setting the stage to get unpaid time off via FMLA (I meet the various time-with-employer requirements). I hit the place on the form where I'm supposed to document the care I will provide and estimate of time needed, and I'm not sure what to put. "Provide psychological comfort"? "Help with day-to-day living"?

I recognize that I might be trying to do this too soon, not knowing exactly how much help she will need when she is out of institutional care; for all I know her actually going home and leading any semblance of normal (assisted or not) life are just wishful thinking. I just want to get this approved now so that I can use it when needed, but I really don't know what kind of care she will be needing. I live far enough away that I can't easily just ask one of her doctors what they think about future care.

Also, any thoughts on which doctor would be the best to complete the rest of the form? Primary Care, Neurosurgeon, Oncologist?

I'm in no way asking you to help me commit fraud. If you tell me you're familiar with FMLA cases and what I'm doing is wrong I'll certainly back off. I think my employer is understanding, but I want to make it easy for them to approve and protect them from audits.
posted by anonymous to Law & Government (11 answers total) 2 users marked this as a favorite
I don't think you have to have a doctor fill out the FMLA form for family care. That's normally for when you are taking FMLA for yourself, not for someone you're caring for. It would be an invasion of their privacy to involve their doctor. I would check with your HR department on that requirement.

I can't remember what I put on my FMLA form, but it was something along the lines of "Intermittently - Doctor's appointments. Continuously - cancer -related recovery care." Then I notified my company when I was on intermittent care and when I was on continuous care. My impression was the "estimate of time needed" was sort of a living part of the document - they want it so they can project how you will be spending your 12-week limit.
posted by muddgirl at 8:56 PM on March 27, 2015

One phrase that might be useful is "respite care" - which is where you step in for a while so the primary caregiver can take a break.

I don't know for sure how that matches up with FMLA categories. But I googled around and found this - a study on FMLA from Georgetown Law from 2005, which suggests respite care and psychological comfort are both eligible caregiving activities. I don't know if anything's changed, or if there's some special circumstance I'm overlooking, but here's the passage:
The regulations define “caring for” an ill family member as providing either physical and/or psychological care to the family member, making arrangements for changes in care or providing respite care for others who normally provide such care. In promulgating the regulations, DOL stated that this regulation “clearly reflects the intent of the Congress that providing psychological care and comfort to family members with serious health conditions would be a legitimate use of FMLA leave entitlement provisions” giving “no discretion” in this area to employers to deny leave on this basis without running afoul of the prohibited acts provisions of the FMLA.
posted by LobsterMitten at 9:01 PM on March 27, 2015 [2 favorites]

I'm not sure how much time is left, but you might want to save much of your time off for the hospice portion of this process. The end is the most intense, especially in the case of home hospice.
For now, do all of your communicating while you can. The fading out comes quickly.
posted by littlewater at 9:23 PM on March 27, 2015 [3 favorites]

I kept it pretty vague on my form. My mom's primary care physician signed off. She didn't have to share any medical info just confirm Mom needed my help. HR tried to get me to specify number hours/days a week but when I pushed back and said it would vary they backed off.
posted by agatha_magatha at 9:26 PM on March 27, 2015 [3 favorites]

I did the same thing for when my husband was diagnosed with GBM (Memail me if you want more info on that). His neuro-oncologist signed off on the FMLA care. As it turned out, I never used any of my FMLA leave time for a variety of reasons and it would have been really easy to do it on the spur of the moment had I needed to. It almost ended up being more of a hassle to get it in place at the time than it was worth to have the peace of mind knowing it was in place should I need it. It was a little different since I was clearly his caretaker.

GBM can take a lot of different courses and there's no one journey so I'd keep your options open for now. I think you can even do a retroactive FMLA if you end up needing it in an emergency and can't get it all sorted out prior to taking off.
posted by otherwordlyglow at 9:51 PM on March 27, 2015

Seconding littlewater, and save as much time as you can for later, when she'll need you more --- true, the docs gave that 12 month median survival rate, but that doesn't mean she will hit that mark: I've got a friend who was diagnosed six years ago last month with stage 4 lung cancer, at which time he was told he had 12-24 months maximum. Maybe your mom will be that lucky, too.
posted by easily confused at 3:43 AM on March 28, 2015

I can't help with the details of FMLA as I didn't have to apply for it. But I can say a little about my experience with caring for someone with that illness. My mother died a couple of months ago, two and a half years after being diagnosed with GBM.

This is an incredibly unpredictable disease. She was unable to manage without 24 hour home based care a year after her surgery. Another person who was diagnosed on nearly the same day (and is still alive) was cycling to work a year later.

In any case though I would get the paperwork done now. The progression can be really unpredictable - with a gradual decline accompanied by sudden downward plunges.

It's impossible to decide what to do with limited amount of carer leave. The fact that I took (non FMLA) leave during the time when she was still the person I knew is unbelievably precious to me. But so is the time I spent as her 24 hour carer along with my siblings, when she was barely there.

If your mother's husband is in her age range, be prepared that he may be physically unable to do much of what is required to care for her. In my mother's case - which certainly not universal - she was never able to go off steroids, and as a result gained weight and lost muscle tone and was hard to lift.

If you would like to talk about the disease or my family's experience, you (or indeed otherwordlyglow) are welcome to memail me, of course.
posted by sockofdreams at 4:03 AM on March 28, 2015

Forgot to mention, in case it's comforting, my husband is very much still alive and doing well. He did not have surgery but 7 months after diagnosis, he's feeling pretty good and is very active. It's kind of impossible to say what the next 7 months will bring though.
posted by otherwordlyglow at 9:17 AM on March 28, 2015

LobsterMitten has a great suggestion about respite care. Someone I love -- I'll call him "Andy" -- was diagnosed with GBM in early 2009 and lived until December 2010. I helped provide respite care on an informal basis so Andy's dad (his caregiver) could go for a walk or run errands without worrying that Andy would need to use the bathroom and fall while trying to get there on his own.

Andy was about 50 at the time and his dad was in his 70s, and the situation got difficult. As with sockofdreams' mother, Andy couldn't go off steroids, and as he gained weight, getting him to the shower, toilet, etc., was not a task that an elderly man could do.

Do any of your siblings live close enough to your mom and
her husband that they could stop in regularly as time goes by? In Andy's case, his dad just became too tired and overwhelmed even to realize that he couldn't do it anymore, that his son needed 24-hour professional care. A couple of us had become close to Andy's sister, who lived about 3 hours away and visited every 10 days or so, and she came by, validated our take on what was going on, the train rolling on a hospice referral.

Andy lived another two months, and his dad came to see him every day, but it was time that they could enjoy because his dad wasn't stressed by helping with the front line care tasks.

Sorry for the wall o' text, and please keep in mind that if ever there were a situation in which YMMV applied, it would be this one. Like others have said, GBM is unpredictable. But please feel free to MeMail if you'd like to talk or ask questions. My thoughts go out to you and your family.
posted by virago at 1:14 PM on March 28, 2015

Ran out of time to edit:

"... and she came by, validated our take on what was going on, and got the train rolling on a referral to a hospice facility."
posted by virago at 1:23 PM on March 28, 2015

My thoughts are with you. My mom also was diagnosed with GBM. As other people have mentioned, I was glad I was able to spend time with her at different points during the progression. She had a good stretch of time after diagnosis where she was completely herself and felt well, and it was good to have that time together. Later she needed skilled care around the clock, so I wasn't in a primary caregiver role but still wanted to be there as much as I could.

One thing to check with your employer about is family sick leave. I was able to use sick leave without invoking FMLA, so I still had FMLA time (unpaid) to use once I'd gone through my available sick time. As far as the forms, the neuro-oncology nurse filled out the caregiving needs parts for me - don't remember what she put but it was not terribly detailed. Even without being a primary care giver, whatever she put down was enough for FMLA. I didn't, and you shouldn't, worry for a minute that the care you'll be giving isn't "enough" for FMLA. Being with your family through this is caregiving no matter what form it takes.

Take care of yourself too, and here's another offer to answer questions, share experiences, whatever you might find helpful, via memail if you want.
posted by tinymojo at 8:40 PM on March 28, 2015

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