Caregivers - What did/do you do about work?

[LolasDaughter]

A quick update - we are still awaiting the biopsy results and scheduling of the PET and MRI for my mom - but we were told Friday it looks like Mom has inoperable LC (8 cm mass - no official type or stage yet), with possible lymph node involvement, questionable lesions on the liver and a 5 cm mass on her adrenal gland.

I am her daughter (live in the same town) and work 30 hrs/wk from a home office as a fundraising consultant. The job is good but demanding. I am married and have two sons (4 and 9) and have in the past questioned if I should be working and how our family life would change (for the better) if I did not.

With this with Mom I am again questioning the fact that I work. I was feeling I had minimal 'margin' before we got this news and now I'm wondering how I'm ever going to 'do it all'. I am fortunate to be in a situation where working is a choice and not a necessity. My husband has a good job and we could certainly live on his income with making some adjustments.

And so my question is - have any of you taken a leave of absence or stopped working after getting the news of a loved one's diagnosis? I would love to be available to take mom to her chemo and radiation appts (doc said will probably be her course of treatment) and simply just be available for whatever. Not to mention the benefits to my immediate family. Something about getting this news re-adjusts the priorities and work has just gone to the bottom of a very long list of what's important. But I also don't want to make a decision at an emotional time that I may later regret.

Has anyone else dealt with this? Any thoughts/additional points of view would be appreciated!

[JB]

No experience here, but I can offer some points of view. One, if it was AT ALL possible for me not to work and spend time with Col, I would do it in a heartbeat and never regret it. I don't want to work anyway. lol.

My parents best friends dealt with LC as well. When she was DX he only worked literally 1 block from home and could be flexible. Her sister who lived over an hour away quit or took leave, as her husband continued to work, and spent every available hour she had with her sister. Ask her about it, and she'll tell you it was the best decision she's ever made, and she actually lost some "family" time because of the distance her sister was from her own husband and children.

One other close friend of my parents had the same thing happen, unfortunately the husband was deceased. Her daughter, who lived within a mile, stopped working and spent every available minute with her mother as well. Again, same sentiment, no regrets, best decision she could have made.

These are just examples and everyone is different. This is by no means a glamorous role. It is challenging mentally and physically, but it is also rewarding and cherished time spent together.

As you said, these situations force us to re-evaluate our situations, and in some ironic twist, make us focus on the things that are truly important. All that babling that I did above aside, given the chance, i would do it in a heartbeat.

Best of luck with your situation regardless of your decision.

[Barbara Lea]

My husband was diagnosed 2 years ago. Unfortunately I have to work to help with bills and I carry our much needed health insurance. We also have 2 children in college. I have taken time off here and there to go to dr. appts., even if just a few hours at a time. When he had surgery I took a few days. My business partners growled at first, but then one partner's wife had a heart attack and by-pass surgery. He is now more understanding. Jim is now stage 4 and under Hospice care. he is still able to be alone during the day. I only work 1 mile from home so I can run home at lunch or if he needs me. His siblings stop in and spend time with him when they can. As his disease progresses I'm sure I will have to take a leave but will also have help from his sibs. If my income wasn't necessary I would take leave now, but it just wouldn't be financially feasible. I spend my evenings and weekends with him as much as I can, have cut back my outside activities. If you can take the time to be with mom now cause you never know what's around the corner. Take care. Barbara Lea

[Nick C]

I never had to make the decision to stop working, but I was ready to.

I was going to go with whatever I felt at the time.

My job was flexible with appts and time I needed for Mom, so I was blessed with that.

But if things went bad and mom needed LT care, I felt comfortable leaving.

[RandyW]

My boss was so flexible he Let me work while Deb was in chemo and then went to pick her up and take her home. His thing was Family First and work second. He ios also a Leukemia survivor so that helped. I never missed an appointment no matter thet ime of day or Day of week.

[angelofcharlie20]

My supervisor was pretty flexible. She let me take sick time to let me take my Father to doctor's appointments. (Her mother passed away from LC March of 2005) I was also able to switch days off too which was great.

[recce101]

As you said, it's fortunate that you have a choice about work. Here are some random thoughts to put into the mix:

At this point you don't know how your mom is going to do. She could do quite well and need very little assistance from you other than going with her to appointments to lend a second set of ears and to keep on top of what's happening.

The initial weeks are hectic with multiple tests and consultations, as you've seen. After treatment starts things will settle down, especially when the radiation phase is complete and she has only the chemo and an occasional scan.

Your two boys will continue to need you as much as ever.

If you have enough control over your workload, you might consider cutting back instead of stopping entirely. That would keep you up to speed on new developments in the fundraising business in case you want to continue doing this type of work into the future.

But, if it's more of a job than a career, and you can make do on your husband's salary, and you're already spread pretty thin, quitting completely probably sounds very attractive. Your own health is important too and has to be one of your considerations.

Best wishes and Aloha,

Ned

[Nova]

I was happy to read that you have a choice as to whether or not to work. That way if you decide to quit for a while, you won't feel pressured.

I'm going thru the opposite thing myself. After being a "stay-at-home" mom for 15 years, I'm having to go back to school and work. Yuck. Not something I'm looking forward to, but I still feel thankful that I am able to.

I'd say to do whatever you feel most comfortable with, and I'm really happy that you can choose. That makes it much easier.

Best wishes for your family,

Nova

[Brandyswa]

Well, I haven't had to take a leave of absence but I have taken alot of time off of work. I have the attitude that my grandpa won't be here for ever but work will be. I have worked very little and I have had to learn to cut back on certain things but we have managed. I have used alot of savings but I have enjoyed all the time with my grandpa. The moments that my 2yr old & granpa spend together is worth everything to me. I have enjoyed the time. Good luck with your decsion. Luv, Brandy

[chloesmom]

I've been through the surgery and the chemo myself, and I'm grateful that I did very well throughout the whole ordeal.

I just wanted to say that you really don't know how she's going to do, and hopefully, she will have the same type of experience I did, which means that she really won't need much in the way of your time.

My husband worked through my whole adventure with all of this, and he has driven me to my appointments with my surgeon, which involved a 10 day post-surgery visit, and then every three months for two years. Now I only go once a year. I was capable of this myself, but the anxiety of it all was the reason he went too.

I've gone to all my oncologist and chemo appointments myself, which was my choice. He would have gone had I asked.

Of course, he was there for my surgery and was at the hospital to see me all three days I was in. When I came home, he was home a lot the first week, but after that I was up and around really well.

Your mom is still young, and barring any other health issues or serious complications, I don't think I'd get ahead of myself too much with thinking about making any drastic lifestyle changes yourself.

Just my thoughts for what it's worth.

Cindy

[dchurchi]

Like some of the others, if I had the choice, I would have quit work in a minute to be with Alan.

I have been very fortunate, in that I am able to come

and go as Alan's appointments need me to. I did take

family leave when the cancer went to his brain. We have been bleesed in the fact that Alan is doing well

enough to be on his own while I am at work. I need to work to cover our bills and keep my insurance

which Alan has always been covered under. But again

my choice would not to work at all given that opportunity.

My prayers to you and your family.

[overtherainbow]

I was living in North Carolina at the time of my Dad's diagnosis and my entire family was in CA. I was all set to start at Duke nursing school. But the further we got into dad's treatments and the more I traveled home to steal time, the more I realized that I needed to be there for good.

So I deferred at Duke and moved home and had 2 1/2 amazing months before Dad passed. I was able to live with my folks and got a job nearby that was extremely flexible (I still had a mortgage back in NC so the bills had to get paid).

It was a drastic decision but looking back I am SO glad I made it. I would not have done anything differently.

My dad's friend, a cancer support psychologist, gave us the concept of "windows". She said you have a window of opportunity to live life to the fullest and with cancer you don't know how long it will last. So make decisions as though you have one day left...if time is limited you'll have no regrets and if you get more time than you thought, you'll have a host of wonderful memories!

Dad's window was 6 months long and I got to be there. Despite the pain and the grief, coming home was the right choice. We all have different circumstances but I think when and where possible, we should take advantage of the precious gift of time.

[karenlaureti]

I was lucky enough to work for a company that gave me a lot of time I needed. If I were you, i would take the Family Leave Act. That way, you can take time you need now, and go back when you are ready. I was so glad I had time with my Dad. Not as much as I wanted, as he lived in SC, and I lived in PA, but I was able to do some things. Good luck!

[moorech3]

Before quitting to stay home with my twins I was a Human Resources Director. If your company is large enough, they are required to provide a minimum of 12 weeks unpaid FMLA leave. It can be taken all at once or intermittantly for appointments.

If you do decide to quit altogether, I do NOT believe it would be looked at negatively when you decided to go back to work. In fact, I personally would see it as a positive showing you are a responsible, caring, compassionate person with your priorities straight who is dedicated to the task at hand.

It is a tough choice and scary to leave a job, expecially one you like. I can say I feel blessed to have been able to be there for whatever my mom has needed through this battle she is waging and not feel torn by work responsibilities. Best of luck with your decision and prayers for you and your family.

[chesney]

Luckily I also work for a company who has been very supportive about giving me time to spend with Mom and take her to her appointments, etc... But I do feel that there may be one day that I will have to take some sort of leave. I have talked with all the powers that be at work and they have made me a back up plan for the day that I may have to take leave.

They are definitely about family first. And there is no way that I could every repay them or thank them enough for giving me this time.

It's definitely a tug-of-war situation with balancing work, bills, house, etc... plus a ill family member.

[LolasDaughter]

Thank you to all of you for your replies. I appreciate all of your experience and opinions. I do know I will not do anything drastic right away but I am leaning toward cutting back my hours to 20/wk instead of 30, if my boss will okay it. Just reading through all of your replies is so helpful.

And Cindy (ChloesMom) you remind me of my mom! Driving yourself to chemo and appointments sounds like something my mom would do. I had to chuckle when I read that! I think it's that spunk (secondary to the Good Lord, of course!) that will get her through this.

[janehill]

My mom lived over an hour away and I was there all the time to help her. But when she was no longer able to live on her own I moved her into my house - it was difficult but certainly the right thing.

There is no way on earth I could have imagined my mother living on her own somewhere battling this disease and me in another state making calls but being unable to physically help. To say that treatment is taxing on the body is a gross understatement.

I know there were people who thought I was nuts to take on so much. They would tell me how much they adored their parents more than anything in the world but couldn't do the same for them for one reason or another. And I would say, If it was one of your children, would you do it? They'd say yes, of course. And I'd say, See - when you love someone that much, you figure it out but you do it because you can't imagine not doing it.

You'll figure it out if/when you need to, don't worry. That you're even asking the question shows where your heart is.

[Don M]

Welcome. Things will generally move faster and communication between doctors is better at a major comprehensive cancer facility.

Here is a list of the comprehensive cancer centers approved by the National Cancer Institute (NCI). There are other fine cancer centers not on this list. The point is to go to a facility that has all the specialists in one system. They have a team approach and talk to one another and you can usually have a shorter turn around for appointments, especially at the diagnosis and treatment planning stage.

http://cancercenters.cancer.gov/cancer_ ... names.html

Don M

[Steph74]

my office let me go part time - 20 hrs a week, and once I couldn't afford that anymore, let me work from home twice a week, they should be flexible - she moved in with me, so that's was a little easier, my husband is around to help as well.