Tips for parenting with chronic illness

November 18, 2008 10:49 AM

What are your tips for parenting small kids when you have a chronic illness?

It looks like my chronic illness is coming out of remission after 3.5 years. I have children aged four and one. I'm a married stay at home mom and I have a successful, growing side business. My Crohn's Disease appears to be coming out of remission and it is probably at a 2/10 right now, in terms of how problematic it is (and compared to it's worst, which would be the 10). But it's been three weeks of this and I'm starting to get exhausted and my kids are tired of it. It's very difficult to be even a slightly attentive parent when you're running to the washroom for 10 minutes of every 30-60, if not more. And it makes getting out and doing normal things a bit of a challenge.

If it was just me, this flare up would be a downer, but not unbearable. It's just that learning how to manage this as a parent is the tricky bit. I try not to think about what I'll do if I become sicker. I try to focus on getting well and being the best parent I can be.

My husband and I do not have family nearby. I don't have any childcare, other than a couple of hours of preschool. I don't really want my kids in daycare or with a nanny. That's why I'm at home. But I recognize that I cannot control my illness and that I may need to consider child care if it gets worse or even stays like this for an extended period of time. (I am #300 on the waitlist for daycare and it is *incredibly* difficult to find a part-time nanny where I live.) So let us assume that, while I will explore child care options, it's not really something I can consider further. All my friends are either working or run their own businesses and can't really do more than provide very occasional emergency baby sitting.

So, ignoring child care, what are your tips for parenting small children when you're dealing with a chronic illness? I recognize that Crohn's is not the only or worst thing out there and that people parent while managing difficult health conditions all the time. But I'm new at this. So your tips are welcome. Thanks.

posted by anonymous to health & fitness (10 answers total)

Not sure if my anecdote is going to be what you're really looking for, but here goes.

Growing up my Mother had chronic bouts of illness that would keep her in bed for days at a time. Thinking back, the most comforting thing she did for me was just explaining that she was going to be okay, and letting me stay around -- rather than shipping me off somewhere and frightening me further.

The time I remember being the most worried were when I was sent to a relatives house for the day. I found ways to entertain myself; books, documentaries and the like. I think it helped me become a more self-reliant person, if only in a small, still-controlled, way.

Hope that helps somewhat.
posted by aleahey at 11:06 AM on November 18, 2008 [2 favorites]

One of my best friends has Crohn's Disease and three children under five years old. She is an amazing mom, and it blows my mind that she is so amazing even with the Crohn's (which I don't believe has been in remission at all since she had the kids). I know she works very hard not to let her illness effect her parenting, and I think her most painful struggle has been to control her mood swings around them when she is taking Prednisone. As for the running to the bathroom, that has absolutely been very tough for her at times. Although her kids, particularly the older two (who are twins) have grown up understanding that sometimes mommy has to go to the bathroom lots and that they need to be patient and behave when that happens, it's still difficult to take the kids out somewhere alone sometimes, as she can't just leave them in the car and run into a McDonald's to use the bathroom if nature calls.

I don't know if any of this is helpful, I just wanted to let you know that it's possible to be a great mom even with a chronic illness. My friend is a wonderful example. If you have any specific questions that you think she could answer, send me an email and I'll be happy to pass it along to her.
posted by amro at 11:33 AM on November 18, 2008

Oh, and she works a full-time job as a teacher and spends as much time with the kids as possible when she's not working.
posted by amro at 11:35 AM on November 18, 2008

But You Don't Look Sick is a website run by and for people with "invisible illnesses" such as Crohn's. The founder has lupus and is a mom. Check out the postings and forums - there are loads and loads of parents in your same boat.
posted by Rosie M. Banks at 12:21 PM on November 18, 2008 [1 favorite]

I don't have a chronic disease, but I am currently immobile with a broken knee, and have a two year old.

The two biggest things I've learned are a) don't try to hide the issues or be coy. Be upfront about what's wrong (in an age appropriate way) and try to find ways to involve the child(ren) in finding ways to make this the "new normal", and b) having in-home childcare help while you are there (ie: a mother's helper) is totally different from having a nanny or having a child in daycare (my son is in daycare full time, but right now we have help in the evenings when my husband is at work, since in my immobile state I am not adult supervision). You remain the authority figure and the caregiver in this situation, and the helper is just there to ... help. If things get worse (say up to a 5 or so) getting some inhome help while you are home could help ease the "oh my god what is the toddler getting into" stress.
posted by anastasiav at 1:27 PM on November 18, 2008

Another idea is to develop a community of other SAHM's to get together with i.e. Mom A comes Monday mornings, Mom C comes Monday afternoon... when things are rough. Kids like the company of other moms and kids, and it takes the "what are they up to while I'm in the bathroom" stress off you.
Places to look for such moms: drop-in centers, kids rec programs, church groups/MOPS, a local Crohn's group/website. Post something on Craigslist or your local/neighbourhood newspaper. Make your needs known so people can step up to help. No apologies/excuses needed!
posted by winston at 7:26 PM on November 18, 2008

My best friend has a chronic illness/disability and two young children. She has done an incredible job being present and loving during the more limited time she is available to them, and has arranged good care for the times she is incapacitated. She found that a responsible teenage "mother's helper" type person was a great help and more affordable than a nanny/day care. An au pair might also be a solution for this - basically having an extra pair of hands and someone to share responsibility with you while you're less available to the kids. Best of luck during this difficult time.
posted by judith at 7:32 PM on November 18, 2008

Based on my experience as a busy mother (although not with a chronic illness).
- You can probably find a middle school student who would be delighted to play with your children for a few hours a day while you supervise (rest, do housework, deal with your illness).
- If you don't already have help with housekeeping (and you can afford it), that will take some of the pressure off of you. Also check out home delivery of groceries.
- Keep some baby toys in the bathroom so you can bring the 1 year old in with you if needed.
- We had a TV/video player in the bedroom - obviously there are limits on how much you want to use it as a babysitter but if it might help if it is somewhere where you can keep on eye on the kids with bathroom door open.
- Realize that most SAHM mothers don't spend all that much time giving focused attention to the children - they are either taking care of the child or doing housework. Make a list of small activities (say 10 minutes if that seems like safe window) that your 4 year old would like to do with you - read a story, draw pictures together, play a game, have adventures with dolls or stuffed animals. PIck times when you are available and the baby is napping (or with the mother's helper) then let your kid pick what to do with you. (Using a timer makes it more predictable for the child and clearer that you are committed to pay attention during the time.
posted by metahawk at 10:01 PM on November 18, 2008

I am a SAHM who also works about 20 hours/week both in and outside of the home. Some of my work is accomplished when my 6-month-old is asleep, but I also have a babysitter come in two days a week so I can have some face time at the office, go to doctors appointments, etc.
I don't have family around and all of my friends either live far away or have busy lives, so I looked up my local MOMS club. It's an international organization of moms. Most in my area are SAHMs, but some work too. We have a good support system and people are always willing to jump into action to help out. There's a babysitting co-op and a Helping Hands service, which provides whatever you need when you need it (illness, injury, new baby, etc). We don't belong to a church, so this is a good way for me to meet other moms and form a support system.
I would urge your husband to take time off when you feel you are unable to care for your children to the best of your ability. I am assuming he has sick time--that's what it's for, to care for sick people, whether it's the employee or a family member.
Also I was able to find good sitters at sittercity.com. And having a professional housekeeping service come in, if even once every couple of weeks, will be a lifesaver.
Don't feel guilty about this. You may not be able to control your condition, but you can decide if it controls you. Make your needs known. You can't be the best mom for your babies unless you take care of you first. Good luck.
posted by FergieBelle at 5:34 AM on November 19, 2008

Have you tried VSL 3? It's a very high dose probiotic that has done so well in studies of people with severe bowel disease that many doctors recommend it. It even sent a lot of people into remission. It comes in both prescription and non-prescription dosages. Google it!
posted by serena15221 at 9:20 AM on November 29, 2008