Over the years Jason and I have come up with a system to deal with life while Ellie is inpatient.
We have to split responsibilities. Here is how it works...
I go with Ellie to the hospital and stay with her basically 24/7. I leave her room (but not the hospital) to eat/shower/go to the bathroom/maybe exercise. There have been times I have left and frankly things have happened while I am gone and/or I worry the whole time. It is hard leaving my non-verbal child that I can communicate with, but it is difficult/impossible to train a nurse in 5 minutes how to communicate with her.
Jason stays home. He tries to go to work as much as possible. Which he is able to do mostly as long as we have childcare.
I am in charge of all things at the hospital and Jason is in charge of all things at home.
So Jason takes care of the kids, arranging childcare, the house, meals, homework, lessons, extracurricular activities, etc...
I think I have the easier job...don't you? He is amazing!
Once Ellie is discharged from the hospital is when the real work begins (for me). If you think about people who have been in the hospital you may realize that they get sent home before they are completely better. There are still treatments/therapies that need to be done as well as additional monitoring.
We are never back to baseline when we go home. I usually have to watch her/monitor vitals more vigilantly. More suction. More breathing treatments. More wound care. More of everything on top of all that I regularly do for Ellie. This usually takes a week or 2 until we can get back to normal.
This is all in addition to now having the responsibilities of the house and kids back on my plate. I am not trying to get sympathy, just let you know how it is.
So that brings us to...how can you help while Ellie is inpatient?
(While inpatient...all offers of help should be directed to Jason)While she is inpatient...contact Jason and tell him which days you are available to watch the kids. Especially Sabrina while the kids are at school (approx 7 AM-5 PM Mon-Fri). *See note about specific help
Ask Jason if you can come in and clean the house or clean a room or do the dishes, etc. Yes, I will probably be embarrassed (I am not the greatest housekeeper)...but I will not look a gift horse in the mouth. It would be appreciated. *See note about specific help
Ask Jason if you can come pick up the laundry and take it home and wash, dry and fold it for him and the kids. *See note about specific help
As far as dinners go... A lot of the time Jason and the kids either eat with his parents or my parents if the kids have been staying there. Or they are busy at night coming down to the hospital to visit.
Dinners are MUCH MORE HELPFUL once she gets home. Remember that 1 or 2 week recovery period at home where Ellie needs a lot more help. This is where dinners are really really really really really appreciated. I think people often feel like once you are home then you are good to go. This is not the case. This time period is just as hard if not harder than being in the hospital.
We are OK with food for Mikael in the hospital and gas money to travel back and forth. We do not need help in those areas.
We do not need help with medical bills. We have private insurance and medicaid. Ellie's medical bills are covered. When I write on Facebook to email or call your legislator and ask for money for medicaid or DSPD or other things to help people with disabilities...that is when I need your help.
Adults can come visit Ellie in the hospital if they are healthy. If anyone at home is sick, we would prefer that you don't come.
Mikael would love to eat lunch or dinner in the cafeteria with you or walk up to the Point with you and eat lunch.
You can send a note to Ellie (Eleanor Stansfield) through this link. It will get printed off and delivered to her room https://intermountainhealthcare.org/locations/intermountain-medical-center/hospital-information/contact-maps/email-a-patient/
If you make or buy a card etc, Jason can deliver it for you.
Of course normal hospital type gifts are never refused! (Cards, Mylar balloon, stuffed animals, blankets, etc...) Latex balloons are not allowed and live plants are not allowed. Here is a link to the hospital gift shop https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/gift-shop/
How can you help once Ellie comes home?
(Once home all offers of help should be directed to Mikael)Once again, dinners are much more helpful once she comes home. This allows Jason and Mikael to take care of the extra responsibilities going on with Ellie and readjust to life. Anytime in the first 2 weeks, we would love to have a dinner brought. (We don't need meals every day for 2 weeks...but feel free to reach out and bring a meal one night)
And I will never ever turn down cleaning and laundry offers either.
How to offer specific help
The offers I will turn down are ones that sound something like this, "call me if you need anything." Those are vague, we don't know what you are offering and to be honest they seem like an empty offer.Here are some ideas of how to phrase specific offers of help...
- I can come pick up the laundry on Wed and return it on Thur, will that work for you?
- I would love to take the other kids swimming on Fri, can they come?
- I have 2 hours on Monday between 9 and 2 can I come listen for Ellie's monitors while you take a nap?
- I am running to Walmart, can I grab anything for you?
- I would love to come clean your bathroom (or sub any household chore) at 9 AM on Tues, would that be OK?
- Can I help TK with her homework on Thur night?
General ways you can help
Ronald McDonald House- Donate to the coin collection boxes at McDonald's
- Save and donate your pop tops (Mikael can bring to SLC for you)
- Put a collection bin at your work for pop tops (Mikael can bring to SLC for you)
- Prepare and serve a meal to inpatient families. Sign up at https://www.rmhcslc.org/get-involved/adopt-a-meal/
Donate blood or plasma
- Donate Blood to the Red Cross (Put zipcode in upper Right-hand corner) https://www.redcrossblood.org/
- Primary Children's only uses blood from ARUP (if you care). You can find an ARUP blodd drive on this link https://www.arupbloodservices.org/
Donate to Primary Children's
- This link has an Amazon wishlist of things to purchase for Primary Children's and also items that you can make to donate https://intermountainhealthcare.org/locations/primary-childrens-hospital/giving-volunteering/intermountain-foundation/service-projects-donations/
- Financial donations to Primary Children's can be made here https://give.intermountainfoundation.org/primary-childrens-hospital
1 comment:
I LOVE this post. It is so nice to be reminded and re-educated about what we/I can do to truly be helpful for you and your family. I need to print this! Thank you Mikael.
Post a Comment