Caregiver working while EC spouse is at home

Lotsa Helping Hands
Hi Judy,
I was lucky enough to be retired for 3 yrs before Greg was diagnosed so I didn't have to worry about having to maintain another job along with my full time caregiver duties...thank God!! Personally, I don't know how some of these folks can do it all with jobs and kids to raise. My hats off to you all!
Because Greg suffered a stroke just 9 days after his EC dignosis, once he was discharged from the hospital, he still needed to go back and forth for speech, physical and occupational therapies in addition to cancer treatments. My daughter found a website called Lotsa Helping Hands where she could post whatever help was needed and friends and family could sign up to help out when it worked for them. We were so lucky to have so many friends and family who all really WANTED to do something to help us and this website was a Godsend. Friends signed up to bring meals, drive Greg to appointments, mow the lawn, heavier home projects or just visit with him so I could run errands or get a little time away (he couldn't be left alone).
She found out about the site from a friend who also utilized the site while getting cancer treatments. Maybe you could have someone come while you're at work to help Don and to put your mind at ease just a little. Check it out, nothing to lose and possibly much to gain!
I hope Don's treatments go well and you're able to take some time for yourself too.
Hugs,
Rita

forme said:

Chemo
Hi Judy

Just a thought on chemo and nausea. I don't know what Don's chemo or cocktail consists of, but every one reacts different.

I am sure that he was prescribed anti-nausea meds. Most should be taken on chemo day and for the next few (3+) days. Even if he has NO nasuea, he should be taking them, round the clock. It is almost impossible to get rid of the nausea once it has started. Also most anti nausea meds will cause constipation, so taking senekot or miralax or something like that is a very good idea.

There are lots of different meds available. If the one Don has is not working, please be sure to ask the Onc for another one. Some of the better ones are Emend and Zofran. There are a few others that work well, but these two come to mind as really helpful.
Keep trying till you find one that works for Don.
Also, be sure that he stays hydrated, even if he does not want anything to drink. It helps to flush the chemo out faster. It also helps to lessen any nausea if he is hydrated.
If he is able to swallow, small frequent meals help while on chemo. It is much better to have some food in the tummy while receiving the infusions.

Hopefully this will be a one time side effect.
Positive thoughts to you both.
Lisha

working
Hi judy,

I did work for almost the entire time that Lee was sick. I do, however, have fantastic co-workers, who were very understanding and kind. I was 'on call' for Lee, all he needed to do was call me at work, and I was able to leave. I was given standing orders at work that any time I needed to leave, just to give someone the nod, and out the door I went. This only happened once or twice though. I also took one day every 3 weeks off for his in hospital chemo session. I also took off every appointment, scan and test day, didn't want to miss any information we'd be given. Since he did not have radiation, that made it a bit easier for me to work. We always had volunteers to drive and stay with him for his chemo sessions, but I insisted on going to all of them. I am also sole caregiver for Lee's mom, who has alzheimer's and took sick days to get her to her appointments as well.

My work does offer a 3 month short term caregiver disability program (at 50% pay) which I fully intended to use, when the time was right. Since Lee's illness worsened so quickly I only used 3 weeks of my banked sick days to stay with him at the end. I never ended up having to use disability. Fortunately, I work at a school, and had 2 months in the summer off, which was a big bonus for me.

I did feel terribly guilty some days, leaving for work, and him lying there in pain, misery and suffering, but his response was always that other than being a comfort to him, there was nothing I could do to make him feel better. So, off to work I went. In retrospect, I do wish that I had taken advantage of the 3 month disability, but as I said, things went downhill so fast that I just didn't see it coming. I was sure that we had many months left.

I wish you well,
Chantal

Home Alone
Hi Judy,
It's so difficult to know what is best, I felt bad if I missed work but if I was at work I worried. Once my hubby starting have dizzy spells from low blood pressure I knew it was time to leave my FT job, he actually passed out and I wasn't here. This was a seasonal job so I should be able to go back this yr once things settle a bit. I still have my PT job which is very flexible. I have 4 wks vacation time and I think I will take 2 once hubby comes home from hospital, will play it by ear after that.
Just take it day by day and ask Don what he wants, mine hated me seeing him sick and wondered why I wanted to be home watching him sleep. Just another delicate balancing act!
I went to all drs appts but only chemo/scan days for the 3rd and 4th cycle when BP was low. Didn't want him driving!

Julie

I worked...
My office is fewer than 50 people so FMLA wasn't available to me. I wish it were. I would have taken most of Nick's treatment off. They also don't believe in working from home, so my work days were at work.

My boss' father had Stage 1 or 2 EC 15 years ago, so he understood my priority was Nick. I was able to be at every doctor's appointment, off for the 1st day of both inpatient chemo weeks (both Nick & I lived at the hospital during his chemo, munchkins to my parents), and out early as needed for rough days. We had just taken a Spring Break vacation with the littles prior to diagnosis, so I had little free time left for Nick's treatments. For most of my work absences, I was able to put in enough extra time each week to cover that week's appointments.

Was leaving for work easy? NOT AT ALL! Especially not on Nick's rough days, but it had to be done. No options. I carry the insurance. Nick has been a "stay at home" dad since losing his job in 2008. The littles - 11 & 9 at the time - were a great help to me. They watched over Nick closely and made sure to wait on him as needed. My daughter knew enough to call me when she worried about Nick or his mood of the the day. And thankfully they understood that I had to work.

There's little that's "easy" about EC. But thankfully it IS managable!

Love & Hugs to all

Terry

still trying to work
Hi my name is Ida and my husband was diagnosed with this cancer in July. He was miss diagnosed in Jan 2011 so his cancer is in the late stages. When he was diagnosed I was scheduled to return to work I have summers off. I stepped down from my current full time position and took a four hour position. I have had to take numerouse days off of work to be with him. It is a rough road he started with chemo and moved on to 28 radiations. the radiations kicked his but and he has been very sick not eating at all. I continue as much as possible to work my four hours but some days I feel I just can't go on. I hate leaving him, but I have no choece. Money is very tight as he has to wait till Feb for his disability. The goverment put him on ssi which wasnt much but they did give him a medicaid card. Now we recieved a letter stating when his disability comes in Feb we loss medicaid. I dont have insurance thru my work so now I am wondering how we will get his medical bills paid.

As for the chemo he had his good days and bad. So that was not a prob leaving him alone. The radiation really hit him hard in his last week and I took a week off. I have no more sick time so just delt with it. I am now back at work and keep my cell phone on me at all times and pray he will be ok for the four hours I am away. He sleeps alot now, so while I am gone he mostly sleeps. Working the four hours has helped me also to maintain some normal in my life. I am in the process of seeking counceling for my self as this has taken a toll on me.

Don't know if this helps at all but this is my story.

godd bless
Ida