When the dreams are gone, then what? Have to make some choices this week.

[The Straight Story]

My x has been really sick of late - she has Parkinson's, two brain cysts, and asthma already but it has gotten a lot worse. She has rheumatoid arthritis as well and her lung capacity is 50% at best. Several doctors have told her she has obvious genetic related issues, but being she is adopted she has no medical history.

She just turned 40. She is now on Methotrexate, a very powerful cancer drug that may well help her in 6-8 weeks - but the side effects are terrible (being out of commission for 3-4 days, losing your hair, etc). This is in addition to all the other meds she is on, not to mention the problems those drugs cause (although they keep her able to move, not throw up, etc).

Right now, our daughter (who turns 10 tomorrow) is home schooled. She does not really get how sick mommy is (and has no idea of recent events). Later this year she will be in a regular school, her mom cannot do it anymore (she has been in public school before). There will be days at a time her mom cannot take care of her.

I have a decent job, my company loves me. Won employee of the month when I was a temp. I am now the lead programmer in our dept (they could not afford a full time coder and one of the reasons they hired me in was my coding experience - I do phone support mainly). I have missed several days this year, and most of all last week - because I had to be here to take care of my daughter. They have, and continue to do so, worked with me.

She is not going to get better. I know it. She does too. It seems so easy to type out - but the reality is things for my x are not going to be pretty.

Once baby girl is in a school it might get easier to manage, that is just not the case today. I can, most likely, take off up to 6 months at half pay for family emergencies.

Just last week I was thinking about all the things we would do this year. Going to the creek, feeding the geese and fishing. Wading out to 'zombie island' as Hannah and I call it. Maybe, if all went well, her mom would come with us too. I thought about buying baby girl a new computer or an x-box, so that she could just relax and play her games. Daddy was going to make it all ok- work hard, provide as best I could, mommy was just going to be sick the 'usual' way (with her parkinson's).

Now - well I don't what the hell to do. If I just go back to work and something comes up and I have to miss work I could lose my job and all of my income. If I take off now I will have barely enough to survive on, and a big part of that pay will go to help her mom pay her bills just to keep the lights on.

Like it or not I have to make a decision. I know there is a whole world out there besides me and my problems, folks in Japan are going through a hell I don't even like to think about. We have wars going (and my son is in Iraq right now, so it is on my mind - but not always because of political reasons, to be honest right now is mainly for personal ones). Hell, there are people here way worse off than me - and I say that because I want others out there to know that even though I am going through a lot, you are not forgotten and you have friends out here who do understand - even if we cannot fully understand or feel what you are going through.

I am rambling at this point, probably because I don't know what to say anymore or do. I try - I have my daily routines, including posting here, things that just help me make sense of each day. Take a shower, put on your socks, check email, post some stuff on du, answer calls, make dinner, etc - things were finally getting to be 'routine' for me. And then, it all just got fucked up - and I am not even talking about feeling sorry for me. I know her, my X.

She wanted to raise her little girl, have b-days, make cookies, do normal things. All pretty much gone. Hannah was supposed to go home tonight, be all ready for her b-day tomorrow. Her mom got worn out making cup cakes. So baby girl is with me (not that she minds that, we made some chicken, had some fun, etc).

I have to call work tonight/tomorrow and let my boss know what is going on (I have his home #). If I don't return to work Monday I will have to take a long term leave. If I do go back Monday and then need to leave later in the week because the X cannot care for my daughter it could work against me (just being practical from an HR view) as I have used up all other time off options.

I am sorry friends. I just needed to rant about it. I am watching a woman I loved going down hill, a woman who still loves me really as well. I don't know what to do but know I have to do something. I can't be everywhere and everything all at once. I can't be mr. good employee and the dad that is there as a little girl's mom suffers.

Guess I answered my own question. Just needed to talk it out with my friends.

Lastly, here is something for Chris in her time of need. She loves this poem and often feels like 'The Lady of Shalott' locked in a tower (her body) while watching the world go by. And then, when she leaves the tower...

http://www.youtube.com/watch?v=Vw_cZGrVFqw&feature=related

[CaliforniaPeggy]

1. Rant all you want, my dear Straight Story...

Alas, I have no answers for you...

All I have are these: :hug: :hug: :hug:

K&R

[KittyWampus]

2. Is the main issue- you could use help caring for your daughter for the next... 8 months

while her mother is incapacitated while going through cancer treatments etc?

There may be social services available through your state or charities.

[The Straight Story]

3. Right now, the main issue is

it all sucks, and I have not fully been in this situation before.

I don't want my daughter being cared for by some person in social services. Not sure I know anyone who would want that.

just going to leave it there (nothing against you, and you bring up something I have thought about, but right now I don't want to go there).

[roguevalley]

18. put her in school now and have afterschool activities help with her

care until you can go get her. This is a tough thing, my dear heart. You are caught between all the loves of your life. But now you are the strong back that keeps them all going. You have to do the hard thing. You have to work and your daughter needs care. So you need to strip all of the rest away and focus on these two things: 1) I have to work and 2) my daughter needs care.

Take the simplest steps to making both happen. Your daughter needs to go to public school so that you have a set number of hours where she is cared for and learning and with friends and happy. Then there are programs after school that can help manage your daughter and the activities can be fun. It could be that you can do this and string things out until you can get her. Or, school will be enough hours away from home that going home to her mom will be okay because it will only be a short time later that you can come home and help.

This economy doesn't forgive. You have a good thing going that protects you and your family but it requires you there. Take the simplest steps to protect that simple fact because it is the one thing that will protect all your interests until things get easier or you have decompressed and can think about what you want to do with less pressure on you.

Anyway you go, we love you and want you to know we are here.

RV, been there, done that with two sick parents.

[The Straight Story]

4. Sorry. Just lost 4 out my 5 kids over the years

And I really don't want to have someone else raising my daughter. She is my last child. The only one I have any chance of watching grow up and being a part of her growing up.

I sure as hell, no matter what, don't want to cede that to some social service person. No offense to them.

[Frustratedlady]

5. Please give your daughter a DU birthday hug,

The hoops you and your X must jump thru are mind-boggling. Parkinsons would be enough without the rest.

Do you think your boss is compassionate enough to work with you until you can get the situation under control?

Bless your heart for trying to make it easier for your X. I hope you will find a path to take to keep contact with your daughter and ease the burden for all.

[patrice]

6. I hope you don't mind me mentioning that this is PROOF that we should have

not only Universal single payer Health Care, but also that, in addition to options for long-term and specialized care, there should also be free, optional, day care for those who qualify/need it, maybe even including sliding scale day care for health care employees, especially lower-paid ones. There should be really good community centers with the kind of care that people need, including mental health care and day care.

Sorry, I used your story as a soapbox, TSS, it's just such a perfect example of the way that what benefits you, your x, and your daughter, actually also benefits everyone else, like your employer, too.

[CTyankee]

7. I'm presuming that you've said to your boss essentially what you've said here.

Laid it out in explicit, and very human, terms with her or him. I think any human being would respond the way those of us here reading your tremendously moving post would respond. Put it out there in those stark, human terms: a disabled mother, a 10 year old child, a hardworking father trying to fulfill two roles at once.

Work out a plan. Think it through (altho I am sure you have done LOTS of that). But do it with the boss, or human resources, or perhaps call a meeting with all 3 of you. Since you are a valuable employee they won't want to cut you loose so quickly. Also, you come to them with a human story and that is the strongest story of all.

You have been thru a lot and I applaud you for your being such a good father and strong example of caring. I am so sorry to hear of this situation. I hope for the very best for all of you. BTW, I have a beloved granddaughter named Hannah so that name has a special place in my heart...

[ohheckyeah]

8. Have you asked your employer

about working from home? Is there any way that could be worked out? You could at least have your daughter at home with you and while not ideal it could be better than the situation is now.

My sister is a computer programmer and she works from home....telecommutes. She only goes into the office once or twice a week and that's because she likes to stay in touch with her coworkers.

[northernlights]

9. is there any chance your daughter can come to work with you?

I know things suck in most companies these days. But I remember the old days when I still had my career at the now-defunct Digital, sometimes parents would bring their kids in with them for a day or week or extended period. I remember meeting with clients, who's small children were playing quietly or coloring or something, in a corner of their cubicle or even under their desks.

That could work out better for the company as well, than having you take a leave...:hug:

[eilen]

10. Can you enroll your daughter in school?

And find an after care for until you get out of work? Plenty of people are like you, (virtual single parents) and work something like this out. Maybe you and your ex can share living accommodations (expenses) while she is going through this-- you could be roommates and then your daughter won't be between 2 households. Also, if the school knows what is going on at home, they will provide some extra support for your daughter. You can enroll her anytime during the year. Also there are often summer day programs at a school or town/county park system you can enroll her in when school is over (I don't know what state you are in). I would take advantage of the Big Brother/Big Sister program, Boys Club or Teen Clubs, -- stuff to give your daughter outside stuff to focus on. Ask some of your coworkers what they do with their kids in the summer. You have more options than you think. I think your job is important to you and you should try to keep it and maintain your professional life. It is not a choice of either/or.

From there, explore being home 1-2x a week to telecommute if necessary-- like if your daughter gets sick or your ex needs help getting to a doctor appt.

If your spouse is on medicare, she may be able to get a home care nurse to check on her while she is receiving the methotrexate.

It is doable.

[The Straight Story]

11. She is enrolled for next year

So it won't be a problem then. Problem is finishing out this year.

[eilen]

12. Just enroll her for the rest of this year.

Your family is in a crisis situation right now. They will have the opportunity to test her ahead of the next year which will be better for your daughter as a quarter of the year won't be wasted figuring out the best instruction levels for her. Plus she will meet kids before the first day of school next year and maybe new friends will have some plans for summer she can also join in. She has just as much right to go to school as any other kid-- I don't think they can refuse her.

[Bunny]

13. Very good advice.

:thumbsup:

[roguevalley]

19. I agree with Eilen. I taught for 27 years. Go with the school, hon.

give yourself a break. truly. its okay to do this. Your daughter already knows you are her hero. She will be fine.

[bettyellen]

22. best advice on this thread- it will do her a world of good to be around other kids and also

for you to have a break. other parents and the school maybe able to help w/ after school, carpooling, plans for the summer. You should be taking advantage of whatever support comes your way right now. Your salary and ger education make a significant difference in the quality of life you'll have now, and in the future and regular routine keeps you in touch with a support system, can provide a sense of normalcy to at least part of her daughters life. You owe it to her to create as much stability in her life as soon as possible. She needs a break from this focus on her Mom's illness as do you. Giving up on your job and isolating her from other kids is not going to make this easier down the road. Try not to let your own sense of helplessness guide you right now. I am sorry you're going through this.

[adigal]

14. How about a live-in helper?

I am looking for a caretaker for my doggie rescue dogs and some other animals I want to add to our farm, and I advertised for a caretaker, with free room and board, but no salary. I got a ton of responses, from some very nice and capable people with great references. Things are bad out there, and some great people are not able to find work, and someone may be happy to help out with chores and babysitting. I know, of course, that dogs are not the same worry as your daughter and wife, but I also hired babysitters for my kids when they were babies, and I was blessed to find two wonderful ones who my kids loved like grandmothers.

I am thinking of you and your family in this tough time,
Adigal

[pacalo]

15. Where is your ex's new husband?

Re:

Now - well I don't what the hell to do. If I just go back to work and something comes up and I have to miss work I could lose my job and all of my income. If I take off now I will have barely enough to survive on, and a big part of that pay will go to help her mom pay her bills just to keep the lights on.

Knowing your side of the story & how this is affecting you emotionally, I can't help feeling anger toward her new husband &, honestly, at your wife not doing more to cut off the emotional strings that pull at you. She made a choice between you & the other man while she was sick. She knew at that time -- & so did her new love interest who became her husband for better or worse -- what her future was going to bring. Now that it's here, she should be able to see your anguish in regard to her situation & reassure you that it's not your place to pay her bills, that her new hubby has it under control (whether it's true or not).

Get on with your life, hold on to that great job with all your might, & concern yourself with your daughter's future. What good will you be to her without a job & with the added emotional strain of trying to find another job in today's job market?

[Ilsa]

16. I'm so sorry you and the X and your daughter are going through this.

:hug:

I think getting her into a "permanent" public school, the district where she'll most likely be long term, would be best for your daughter. She can make friends and have some continuity through everything else that is changing so dramatically. This helps teachers form mentoring relationships more easily also, and she can see the same school counselor. Look for a place that has a good after-school program. (if such things are even available where you live.)

If you think you can handle it, and if it doesn't mess up your X's financial situation, maybe becoming roommates might be best for all of you, except when your X is at her sickest. I think you have to consider whether your daughter can handle seeing all of that as it unfolds at her tender age.

Please, always know that you can vent here.

[bvar22]

17. All I can do is recommend your post...

...so that others may read.
You reached across the darkness and touched me.

bvar22

[Catherina]

20. Where are you Straight Story?

My heart goes out to you so much I'm racking my brain trying to come up with possible solutions.

:hug:

[BR_Parkway]

21. Would your employer let you work from home? Seems a bigger "win"

for them than paying you half salary to not be working at all during this time - and phone support along with coding should be things that can be done from home as well.

Good luck with all this, I know it has to feel like it's swallowing you up constantly

[elehhhhna]

23. I get you. My 14 y/o just went to detox for 2 weeks -- abusing a med her doc put her on --

and I have had to miss some time -- not a lot, a few days when we fougt CIGNA to get her in (could I leave a terrifed 14 y/o in withdrawal home alone while this insurance torture/drama was playing out? Fuck NO.)And a few days last week when she was (abruptly) stepped down to outpatient rehab? (Last week she came home for overnights and it's been hellish. She and we were not prepared for it. Frikkin insurance only extends treament for 2-3 days at a time, and we have no idea what's next...and I may have to have her finish the school year via internet. The sucky Charter "recovery" highschool here will not even return my call, and she's not wanting to go back to her HS to finish this year - and her therapists don't advise it either.

My employer has been wonderful...do what you must, etc. but now they're pushing my taking a leave. Forcing a leave, to me, feels like a free layoff. I'm worried about what tomorrow will bring. I'm so raw right now -- it feels like my nerve endings, not to mention my whipsaw emotions, are so close to the surface that I may just lose it. I work my ass off at this job, but having run companies in the past, I GET that this is a pain in the ass for my employer.But I'm really disapointed at the prouting of the typical republicanchristian bullshit: we say we care and we're supportive because talk is cheap and it enables us to pat ourselves on the back. But we're lying. Don't bother saying it if it's horseshit. The office is understaffed anyway --they've just lost 2 good people in 2 months to a non-producing drama queen manager who they FINALLY fired last month after she violated every labor law and anti-discrimination rule that exists -- but, yanno, that's not my responsibility,or my fault.

If we have to bustout the 401K to keep me home for the next few months, so be it. If they ask me to take a leave again, I'm going to tell them that if they want me gone, they need to lay my ass off.

Rambleing here, but I'm terrified. You are not alone.