My mom is still in the diagnostic phase. The past two and a half weeks have been incredibly unpredictable, schedule-wise, with appointments at short notice, schedule changes, etc. Add to that the 3-3.5 hour round trip to the treatment center for each appointment, my own shock, stress, and exhaustion, renting an apartment closer to the treatment center, and coordinating move in. My work has suffered.

We had a treatment recommendation meeting this morning, but before that, I got a series of emails from work about them needed more notice when I'm not there, a new mandatory meeting that I must be at on Monday, my low billable hours for the month to date, etc. So twenty minutes before the meeting, I'm on the phone with my boss crying because he's complaining about my performance and how I need to register my work goals for the year by Tuesday. My goal is to make it through the next week, and I could care less about my work goals for the year. I qualify for FMLA, and I've talked to HR. I'll go ahead and enroll, with the plan of taking it intermittently when needed. But I'd really prefer not to use any of it, except for an emergency.

Will it get better once a course of treatment is selected? I'm assuming that I can arrange rides to treatment 3 days a week, and my sister and/or me will take her on two days with chemo and/or rad oncologist appointments. Being closer to the treatment center will make it much easier.

Any thoughts or suggestions? I'm so bummed out by my firm, especially since I was supposed to be on vacation this week and next! I didn't think that things could get worse.

Little Bird - I'm so sorry this has been so rough on you and that your firm has not been as understanding as they should have been. It's is really difficult for anyone to even imagine what a survivor or caregiver goes through in fighting the cancer battle. You have taken some good steps already - with your plans for renting an apartment closer to the treatment center, coordinating the move in, and sharing the caregiving with your sister. It sure sounds like you do qualify for the Family Leave program and you've already talked to HR so that's good, too. You are a great caregiver and your Mom is fortunate to have you and your sister to help her through this difficult time. When I was in the midst of helping my son with his treatment, I had trouble figuring out my goals for the next hour or even minutes! I can't imagine someone asking me what I was going to do for the next year! I am sure when the course of treatment is set, you and your Mom and your sister will feel more in control and in the fight mode of taking care of what needs to be done. It's good to keep busy, but try to take some time for your own well-being and relaxation. Come here often and let us know how you are doing.

Once treatments begin it will all fall into a routine and become much easier. Before treatments begin, anyone who offers to help write down their name and number. Tell them when the time comes you will call them. When things get going dont be afraid to ask people for help. People really do want to help but most dont know how or what they can do. Once treatments begin there will be a million small things that can add up to be a huge help to you.

If you call the American Cancer Society (24X7) they will send you out a form for the doctor to fill out. She can then get placed on a list to have volunteer drivers take her to treatments. As long as she is not very very ill she would be ok to go alone which can help to take the burden off you. Even if they set her up to have a driver for one or 2 days per week, it still will be a big help.

No matter how things go, dont forget to take time for yourself too. As a caregiver you have alot on your shoulders. At least once a week make time to treat yourself. There are many things that can help ease the pressure. Things as easy as taking a walk on a nice spring day, going to lunch with friends or even out to the movies will help take your mind off things for a little while.

Hang in there and dont forget we are here to help.

Hi little bird. It sounds like you're a lawyer, so am I.

I found the initial parts very difficult, as I would get slotted in whenever there was an opening, which resulted in a lot of schedule juggling. Fortunately I work at my own firm, and my partners were very supportive. Once all the initial diagnostic stuff was done, the appointments were far more regimented with much more notice.

Have you tried talking to a co-worker about trading off certain tasks? Usually people have at least some clients they don't particularly like and if you offer to do stuff for them that is more drudge work, they will often trade. Also, can you set up work remotely? I did that on my ipad, as I spent a lot of time in waiting rooms, so I was still productive. If you have someone do the driving to the treatment, you can work in the car on the way there and back.

Hope that helps.

Hi littlebird,

I am sorry to hear about your mother's cancer and your work predicament. Clearly, your firm does not appear to be on the compassionate end of the spectrum. You did not indicate what your boss' response was once you explained the reason for your own recent performance. If they were already aware and still seem pretty uncaring and unyielding then you need to consider doing things to protect yourself from being placed on performance improvement notice.

Going to HR is a great start as you can officially register the recent changes that are behind the change in your work performance. If you feel at risk this firm might try actions you deem punitive then by all means weigh out the trade off of using up vacation, sick leave, other PTO, then even taking a family leave as necessary to get out of the work treadmill until things stabilize.

Consulting with HR is the very best thing you can do with respect to work contact. Of course, HR gets paid by the firm and has their interest as their priority, looking out for their interest, minimizing their exposure and liability to workplace related incidents so understand anything they suggest or offer is first in the firm's benefit and where there is mutual benefit that is more desirable but is a secondary goal at best and may be just a random outcome.

As mentioned earlier, the appointments will level out and become more predictable. Given where she is in the process, you might also be able to and find it medically acceptable to pick appointment times that work better for your work schedule, even piggyback them onto the same day; that way you can get several appointments done in one day or maybe even get a couple compressed into taking only a half day off.

The other option might be to get an agreement with your workplace that an agreed upon day(s) of each week your availability is subject to medical needs.

Lastly, I know for me once I accepted being branded with the cancer label and then accepted all things related to cancer as part of a new JOB, everything in my life became so much easier to accept and embrace. Being a lifelong workaholic sure made it easier to accept the time and energy I spend researching, preparing for appointments, time in treatment, dealing with side effects, all things cancer -- so much so in some ways I relish the challenge much like a new assignment or job opportunity, just diving in and doing the best job I can.

You also are freed from the guilt of suffering on your current job as you see clearly that you are now working TWO jobs -- no wonder you are tired and some things are being impacted. Either you accept the additional demands in the same bandwidth and suffer the consequences of doing two jobs in the time allotment for one, or see that you need to increase the hours in the days to do both better as that is the only rational and realistic way to fulfill more obligations with sufficient quality, especially since your new JOB is where you are a trainee and have to work extra hard just to learn the ropes.

Hope that helps and good luck,
don

Little Bird, you might also consider delegating the household chores to someone else, or do only what you can. I found that looking after my husband, getting him to treatment, making sure that he had all the meds he needed, cooking for myself etc. literally took up all the time I had in a day. Conserve your energy so that you don't crash after the first couple of weeks. Caregiving is not an easy task and the stress can get to you. Don't feel bad about looking after your own needs.

Hi Little bird. I am an accountatn andiasked work if Icouldget a keyfob to be able to work from home or anyway that had wifii. The were very understanding.I did lots of half days in the office and actually I probably worked more hours from home than I would have at the office. So they didn't lose out. As Christine said make sure you have a break, a coffee or a walk in the park or with a does wonders to give the much needed energy and strength. Good luck, I hope work can arrange something to help you out, we also had the list of all appointments for thr whole course once the treatment started. It helped loads. X

Hi Littlebird

Sounds like your firm doesn't quite "get it" yet. Also sounds like problem solving isn't a strong point. Mandatory Monday morning meeting indeed! Don't you work with smart people who can do stuff like - I don't know - update you when you return on Tuesday? Allow you to attend the meeting remotely? Ring you if they can't figure it out by themselves?.

Your employers need to be shocked and awed by what you are facing so they have a realistic expectation of what you can and cannot do. One thing you cannot do is predict what is going to happen and this needs to be impressed upon your bosses so THEY can step up and show a bit of flexibility.

My workplace was excellent. Even so, I was still reminded of missed deadlines and looming projects which stressed me out and the "take all the time you need" sentiment only seemed valid as long as my work didn't suffer. To their credit, however, once I pointed this out to them, allowances were made (such as attending meetings remotely ) whilst the important stuff was covered by other less able but more available (and willing) colleagues.

Consider a temporary shift in your attitude to work ... For me it was my own attitude that created the biggest barrier. To expect to be able to continue at the same pace at work whilst adding the management/support of a loved one was just flat out crazy. I don't think I realised how much time Alex's illness would take out of the day, nor how the stress of worrying would wipe out my ability to consider anything else.
I became very fond of saying to my mother - "I will save my nervous breakdown till this is over because I could never forgive myself if Alex died and I hadn't given it my all". Remembering why I needed to "give it my all" gave me focus and allowed me to put the guilt of missing work back in its low priority box.

Lay your situation out baldly so there is no misunderstanding of the gravity or risks of the situation. Give them the good the bad and the ugly. I would be inlcined to lay it out to your bosses and HR which may be more inclined to run interference for you if your bosses momentarily forget themselves and ask you to place billable hours over the life of the human being who means everything to you.

Alex suffered complications which added around 50 unscheduled appointments and hospitalisations to his scheduled treatment sessions and appointments. Whilst this will hopefully not happen to your mother, your employers expectations (and your own) need to be tempered just in case...

A couple of things you can count on:

Appointments never run to time
I lost count of the number of times I told work I would not be in till 11am as Alex and I had a 9am appt and then had to ring at 11 to say the hospital was running late I might make it after lunch, then repeating the process to revise to 2pm then maybe 3pm and finally that I wouldn't be in that day. It got to the stage that my assistant would tell me not to worry and she would just tell everyone that I was not available for the day and if I actually did manage to return, it would be a bonus.

Stuff happens
Alex and I had to work around multiple unplanned procedures from blood draws to surgery as well added appointments with allied healthcare professionals outside the scheduled weekly "group hug". There was also a parade of non-medical appointments to sort out entitlements, finances, legals etc. We also found that weekly visits with the general physician became necessary for steadily increasing numbers of 'scripts for pain, reflux, arrhythmias, blood pressure, smoking cessation, mineral deficiencies and metabolic disturbances.

Yes, I agree with everyone else, that all being well, things become more predictable once treatment starts, but there is also plenty of scope for the unexpected.

Through all this, keep remembering your priority is your mother and if work suffers, then so be it. It is also imperative that your employer/boss also remembers that people come first.

HI there... I am not going to comment on the insensitivity of the firm you work for or HR... frankly I work for the school board. When I was diagnosed, I was immediately given a leave of absence, with full pay for three months then 70 of my pay until I was ready to come back. I could have milked this for 3 years had I wanted to but I was back at work within 8 mos (It would have been 5 mos but I have summers off so I started back at the beginning of the school year) I think when you are ill or dealing with a family member who is seriously ill, unless self employed - this is the type of consideration that should be offered unconditionally. If you treat people decently they generally will work harder because it's a job they wouldn't want to lose. ;o) but people here will tell you I am an idealist.

Anyway - did you look into a hope lodge for your mom? Instead of renting an apartment, most cancer centers have a place affiliated with them that offers a room for two people during treatment monday to friday... then on weekends you can drive home.

Hugs and best of luck my dear.

Just to add, you can stay the weekend too. I stayed at Hope Lodge in NYC, thier flagship lodge, for almost 2 months. Some were there longer. Great place.

here's what i learned about our family leave act: it will hold a job spot for you. when i returned, my clients had been reassigned to other associates in my firm, which of course had to be done while i was out with my dad. i had my job for another year attempting to rebuild my portfolio in a dead market before being layed off, which frankly was merciful for me as my boss was just a really sad actor that made a bad situation worse.

but here's the bright side: i'm pursuing my dream as a glass artist. planning during my dad's palliative care stage is NOT any easier, but i can work my own hours. i "planned" to retire in 10 year, but life had another idea. frankly the work and time with my family is more rewarding than any contracts i won.

think about what you really want and need, it did work for me, and i never ever expected it could, fwiw.

An update, at long last. Things did work out. I was able to get intermittent leave through FMLA. The intermittent leave allows me to take time off only when I need it for up to a year. I had no idea it was even an option until I pressed the HR person at my company. It worked out really well, and I could even accrue paid time off and reserve bank time during while taking FMLA.

The oncologist's Nurse Practitioner filled out the form so well that no one ever questioned me about it again, and my team at work has been very supportive.

For others going through this, please don't underestimate the shock and complete life change that happens after diagnosis. I was such a mess that I had a hard time communicating the situation with my company and colleagues, but that was partly because I had no idea what the situation was. They asked me how much time I needed off from work, and I had no idea. We were still deciding on the treatment and had no idea how mom would tolerate it. I also completely underestimated the emotional toll that it would take on me. Doctor's visits are exhausting, physically and emotionally, for both patient and caregiver.

PS: I'm interested in the long term implications career-wise of taking time off, but it is what it is, I guess.

Littlebird - so glad to see your update and that you and your Mom have come through so well. I was a mess, too - when I first became my son's caregiver. Sometimes help comes in unexpected places. Your oncologist's Nurse Practitioner sounds like a real jewel to have helped you out so well with filling out the form and it's good that your work team has be so supportive. Thanks for updating us!