Finances - Working/Alternatives/Finding Caregivers

[TangieC]

Not sure if my title covers what I'm asking...

I need input! My husband is the only one working at this point in time. I had intended to go back to work this fall, only to have my 4 year old diagnosed with Crohn's back in July. He is still not officially in remission (hoping to hear that this week from the doctor), but he isn't on 7 or 8 meds anymore, just three. He isn't fully toilet-trained, will often have days where he has up to 5 or 6 BMs, will break out in a rash on his rear which gets bad enough to bleed at times, low energy, days where you can tell he feels bad, and possibly some joint pain (new symptom). So he really is a lot better considering how bad he was before.

We really need extra income at this point, but I am afraid of taking him to a sitter/daycare. I would want to be sure they gave him his meds like they are supposed to, and frankly I don't know if I trust anyone else to do that other than family. I also would be afraid that I would miss out on something critical and it would cause him problems. His GI also said that he needed to avoid people who were sick, especially with the flu. Another concern is having to miss work if he gets sick or is hospitalized. I feel it wouldn't be fair to me (worrying about missing) or my employer if I had to take off frequently or for extended periods of time.

We are not in terrible financial shape, but we do have some debt we really need to get rid of, and unexpected things that have come up. I'm really torn; I don't mind going back to work, but I don't know if it's worth it. We can pay our bills, but it's tight! Just wanted to get some feedback on how other families deal with it. If he were older and in better health, I wouldn't worry so much. But this is still new to us and I have no idea how it's going to affect my B in the near future. I appreciate any advice! Can I say how much I love this forum? It has been a tremendous blessing to me!

 

[Farmwife]

Same problem my friend. I'm a proud full time mom. I tell people if I want to take a break I'd go do there job. However things get tight. Before becoming a mom I was a pre-school teacher. I loved it but no way would I do that now. All the sickness and such. I'm thinking on-line business of some kind. I love to sew.
Perhaps start thinking about what you could do out of your home.

 

[Clash]

I don't have any answers but we are in a similar situation. I was going to go back to work recently and C has started having issues again. It doesn't seem to be easier if they are older and having issues though I know what you mean about being older in general. I feel if he was in remission or doing well I wouldn't have any issues with it and actually applied for and obtained employment during this time but he started flaring(or whatever is going on) two days before I was to start and I had to give up the job. I knew there would be upcoming dr. appts, tests and meds and I felt it unfair to the employer.

 

[Tenacity]

Someone I knew, has a daughter with crohns, and qualified as disabled and received around $600 a month, and as her primary caretaker, the mom also received $600. This was 2 years ago in a different state, but it may be worth your while to find out if a chronically ill pediatric patient or the caretaker receives any financial aid in your state.

I would try to avoid having to go back to work as it will be hard for you. Can you cut some expenses or dip into a retirement account to pay off all ur old bills and unexpected expenses?

 

[my little penguin]

I work full time but do put out smoke signals to family if needed for help.
All companies offer FMLA after a year of employment . This gives you up to 12 weeks you can take one day at a time if you need to .
Granted even with 5 different specialist I just take half day vacations and so does DH so it works out without any FMLA . Some employers permit you to buy extra vacation days that helps.
A site called care.com lets you look for sitters who have experience caring for kids with gtubes etc...
I wake DS in the am to give him his meds before work.
We have a rule if he isn't vomiting or having a fever he goes to school.
It has to be that way. His Gi is good with that. DS knows if he is really having trouble at school he can go to the nurse and I would get him if a nap didn't help.
Never easy and last year I did not think it was possible but it is.
Fwiw DS has not gone more than 6 weeks without seeing the Gi .
He has had 2 scopes. 2 ct scans and an mre plus a slew if other tests.
We just juggle and keep going since this is life now - we no longer get the bubble.
Not to mention my insurance covers all the formula .

 

[Tenacity]

I also wanted to add that if a flare up is really bad, you can arrange with his school, free of charge, to have a teacher come to your home a couple days a week to home school him.

 

[Tesscorm]

That's a tough call... would it be possible to find only a part time job? It would allow you to earn some extra cash but minimize your son's time at a sitter.

But, honestly, it is tough to juggle. I work full time and Stephen is, for the most part, fine but I still find it a bit stressful with GI apptmts every three months, random regular doctor apptmts for things that come up plus the odd ultrasound and MRE (and then there's my daughter! )

As MLP said, I often take 1/2 day vacation days for apptmts and offered to 'buy' time so that I wouldn't feel that I was always asking for 'another' favour.

Hugs to you, it's tough to juggle it all! :ghug:

 

[TangieC]

Thanks for the input! I thought about doing things out of my home, but I'm not exactly crafty. I thought about tutoring kids, but I don't know how that would work out. My MIL tells me about jobs with our local school system and how that would work out, but frankly, I don't want to be around a bunch of other kids and risk bringing something home to my B. His GI suggested he get a flu shot and to try to keep him away from illness as much as possible. I know I can work from home because of some previous job experience, but I'm afraid the hours will be ones I can't work with. I've praying and I know that something will work out. Again, thanks for all the replies so far!

 

[DustyKat]

Ugh TangieC, it surely is a tough road to hoe trying to manoeuvre a job and kids. :hug:

Not being from the US I can't offer any advice about what programs and benefits may be available to. Can you enquire at the department that pays social security? Do they also process other forms of payments like carer's pensions etc?

I know it isn't always ideal but could you get a part time job that offers work outside the hours your husband works? That way no baby sitters would be required.

I well understand how hard it can be working and juggling illness and appointments.

Good luck hun, I hope you are able to find a balance that works for you.

Dusty. xxx