View Full Version : Managing your kids and your ailing spouse

08-11-2011, 07:25 PM
Wondering if anyone here's gone through this...DH's cancer came back, after 20+ years of hiding out (we though he was in the clear). He'll do 2 months of chemo and then go into the hospital for 3 weeks for a stem cell transplant. After that he's at home for 2 more months while we wait to find out if the transplant engrafted (if it "took").

We still don't have diagnoses for DS (he goes to the developmental ped on Monday, at long last!) but he's probably ADHD, lots of anxiety, super impulsive, aggressive, maybe on the autism spectrum, maybe bipolar, plus the cleft and adoption issues on top of all that. With a regular kid I would just let them sleep with me, eat extra treats and watch lots of movies to keep them occupied and help them feel more secure, but that's not going to work with DS1. Or will it?

I did let some rules lax a bit when we brought DS2 home last year, such as letting him sleep with us, but moved him back to his bed when he started getting aggressive towards DS2 (DS2 was sleeping with us too, but moved to his own bed shortly thereafter). I just don't know...I want to do everything I can to help him while Daddy is sick, but I don't want to exacerbate any of his current challenges by making too many exceptions. KWIM?

08-11-2011, 07:56 PM
I have no advice other than to follow your gut about your kids, but I just wanted to say I'm sorry and :hug:.

08-11-2011, 07:58 PM
I am also so sorry, many hugs for you and your family. :grouphug:

Is there anyone you can talk to at the hospital for add'l help at home - a social worker or similar? Otherwise I really have no ideas.

08-11-2011, 08:02 PM
Oh, I'm so sorry. That is so much to try and juggle.

Can you hire someone to help you with DS some during the week that can help with a set routine/ structure? That way there is some real consistency throughout the day and someone to help you when you need to take your DH to the doctor, etc?

08-11-2011, 08:18 PM
I'm so sorry your DH and your family are going through this. :grouphug:

ITA that someone to help with structure and consistency from day-to-day might be good.

Do you qualify for services from EI or other support (like schools)? Given your situation, I'd talk to the dev ped about whether you can get support as part of the services package.

08-11-2011, 08:22 PM
Can you hire someone to help you with DS some during the week that can help with a set routine/ structure? That way there is some real consistency throughout the day and someone to help you when you need to take your DH to the doctor, etc?

I am sorry your DH's cancer is back. Best wishes for a full & easy recovery. I agree with the above. You've got a lot on your plate & getting a steady person to help you out might be very helpful. :grouphug:

08-12-2011, 08:32 AM
I don't have any advice, I just wanted to say that I am so sorry you are dealing with all this.

Hugs and prayers for you and your family.


08-18-2011, 07:59 PM
I am sorry your DH's cancer is back. Best wishes for a full & easy recovery. I agree with the above. You've got a lot on your plate & getting a steady person to help you out might be very helpful. :grouphug:
So sorry your husband's cancer has returned!!! :hug: Lots of p&pt!!!

ITA with a steady person. My dh has had some major medical stuff in the last couple years (injury though, not cancer) and I found that for the most part providing consistency made things run more smoothly for all of us. It provided the rhythm we needed to make it through. It doesn't always happen, but as a goal it does iykwim. The more I let things slide or be out of routine, the more I set dc up for issues.

08-19-2011, 08:50 PM
Yeah, you are all right - I need to get a steady person who can bee there every week. So many friends have offered to babysit, which is wonderful, but I need to get someone in place who can be here when DH is hospitalized and later during his recovery too.

It's been a rollercoaster week - first chemo appt went well until DH had a reaction to one of the drugs, which they got under control quickly but it left him wiped out. Then he felt great for two days and terrible the next two...checked in at the clinic and all looks good, the drugs are working remakrably well but that just leaves him tired.

Monday we go to the developmental ped for the results from last weeks evaluation...I am so curious to know what diagnosis they will finally make. I feel like it's Diagnosis Week around here...kind of like Shark Week but not nearly as much fun, lol.

Thanks for all of the kind words & thoughts!

04-12-2012, 09:24 PM
Thought i would post an update (tho I can't figure out how to change the thread title to say "Update in #__").

DH needed a lot more chemo than we originally thought/were told that he would need. It took four different regimen of chemo drugs to finally get the tumor burden down low enough to move forward with his transplant. He is doing the pre-transplant stuff (I get to inject him with the stem cell mobilizing drugs, oh joy) and is scheduled to go into the hospital in a couple of weeks.

Lots has happened with DS1 too, some of which I've posted elsewhere inthe forum. But to sum up, he's definately ADHD, probably not on the autism spectrum, but may have some kind of mood disorder possibly bipolar. We've been trying out different meds for the ADHD and more recently the mood. On top of that DS1 has a lot of anxiety about DH, especially when DH is wiped out from chemo but DS1 wants Daddy NOW. In some ways it think it will be easier when DH is in the hospital - easier for DS1.

I'm tyring to think if I can offer any sage advice for anyone else who may end up inthis situation (special needs kids/sick spouse)...but the last few months are such a blur. I did get a couple of babysitters, and that helped a lot. I tried to get some more help but had such a hard time tyring to find someone who could handle DS1 (whi still directs most of his aggression toward DS2), then a friend suggested that I send DS2 to daycare and just deal with DS1 myself after school. Now why didn't I think of that? :-)

Anyway, I know I'm rambling, sorry. In short, parenting SN kids while your spouse is sick really sucks. We have wonderful friends who have been tremendous with support and helping out. But sometimes I wish I could just plop the kids in front of the tv and put on a movie. They're all in bed now, though, so I think I'll go plop myself in front of the tv and put on a movie!

04-12-2012, 10:35 PM
What a hard road. I hope things ease up soon. Best wishes for Dh's upcoming transplant.


04-13-2012, 12:54 AM
Oh Pepper, I missed all of this! What a lot. What a lot. I'd say that you're obviously amazing and a great mom and wife...but that seems inadequate. I'll just wish you super human strength!

(btw if you wanted to edit the title, you can click advanced edit.)

04-13-2012, 07:15 PM
Thanks ladies. I did think of something on the positive side....it's been good that DS1 is already in a separate classroom & sees the school counselor. Both his teacher & his counselor have been great. When DS mentioned that he'd had a bad dream where daddy died, the teacher called the counselor & they took him in for a session. They even called us here at home so DS could talk to daddy for reassurance...maybe the school would be as accommodating in a regular classroom, but it seems like DS's teacher has a lot more flexibility. Anyway, it was nice that DS already had a relationship with the counselor. I'm really glad that he is comfortable talking with her.

04-13-2012, 08:41 PM
That is great that the school is so tuned in and helpful. :hug:


04-26-2012, 12:02 AM
I don't read this sub-forum much, so I have missed all of this, but just wanted to offer hugs and say how sorry I am for all you are going through. take care.

04-26-2012, 06:01 AM
Count me as another who also missed this but couldn't read without offering hugs and prayers.

04-27-2012, 10:44 PM
Thanks again....DH has been in the hospital now for 4 days, and DS1 is having a really tough time. His anxiety is really high and all of his "difficult" behaviors are on, almost all the time, here at home. But he's doing mostly OK at school, and his teachers are being just awesome with him.

Even DS2, who is only 3, seems to be affected. He keeps saying I Want Daddy in that way the 3-year-olds do, thinking that if they keep asking it will come true...we are watching lots of videos of Daddy, and skyping somewhat although DH is on Day 3 of 4 days of chemo and not feeling all that great. So thr timing is tough, so have the kids available when DH is feeling perky enough to skype with them.

We are also using a website called familiesnearandfar.org. I foud it in some parenting magazine..it was set up for military families, for parents to stay in touch when they're deployed, but I figured that it would be OK for long hospital stays too. DH and the kids can draw pictures and post them, as well as text messaged, make music etc. So the kids can see that Daddy did something for them.

Another resource that I want to mention is a book called "Someone I Love Is Sick." You can get it through Amazon, it's published by The Gathering place. They have a parent and a grandparent version...it's looseleaf and comes with a binder, so you can select the pages that you want to include for your child. I had looked at a lot of books about cancer for children and not really liked them (a friend had breast cancer 2 years ago, so I was looking at books to explain to DS what was happening in their family). This book is just simple statements with an illustration, like "Daddy takes strong medicine to help him get better." I found out about it through the school counselor at S's school...the cancer center also gave us a big list of books but I haven't looked at those yet, since DS1 was already reading this one with the counselor and seemed interested in it.

04-28-2012, 12:25 AM
Wow, sorry to hear this latest update. PTs to your family. :grouphug:

Thanks for the book recommendations! Those do seem like particularly good ones for families having to deal with this difficult situation.

04-28-2012, 08:38 PM
Oh, man! I can only imagine how this is. DH had Thyroid Cancer two years ago. I didn't have to deal with anything on the level you are. I only had DS and he was 1.5 at the time, but I was going crazy when he did his radiation treatment and was not allowed to be around anyone for 10 days.
It is great that you have a support system and I love the site you found. I know it helped a lot with DS to have a consistent person that took over when I went and visited DH. Also, make sure to take time for yourself. Don't be afraid to ask someone so you can do something for you. I am sending lots of P&PT.