We have 5 children - all girls. Our 4th daughter is now 4 and was diagnosed with type 1 when she was 22 months old. We have been pumping for nearly 2 years. I also have LADA and pump as well. I currently (and have for many years) work full time as an RN and am feeling completely overwhelmed trying to care for my family, my diabetes, and her diabetes. My husband goes to school, works part time, and cares for the kids. He is good about giving insulin and checking her blood sugar, but isn’t really interested in managing her numbers or altering her settings, etc. The reality is that I manage hers reasonably well but mine not well at all…my time is so limited and i’m so tired.
I have asked for a part time position at work, but being as though i’m the main breadwinner, am nervous about the loss of income. Does anyone know of any assistance available for parents of diabetics?
I know how you feel. Working FT myself, husband disabled and having a tough time even caring for himself, I do all the diabetes management for Eric. Off the top of my head I don’t know of anything but would sure love to hear it if you find a source… could use that myself. I suppose we could look into SSDI… I just don’t have the time, since I’m struggling to find immediate relief for my underinsured husband’s medical debts. But keep your chin up, you’re not alone in this!
Sounds like you need some help with the basics; laundry, housework to free up some time to handle the diabetes issues. Since you’re in nursing, is there a contact through a nursing school (college?) or hospital where you can find an extra pair of hands to come in once or twice a week and just help out? Maybe a nursing student who may take an interest in the diabetic care of your youngest and help with some of the daily grind and make a few extra bucks? Just a suggestion.
It helps to know i’m not alone…I suspect there isn’t much help available, i just feel totally overwhelmed sometimes, as i’m sure you do too. I think it’s very difficult to get SSDI, though i don’t know for sure and am not sure i’d want that anyway, for lots of reasons. I also know I could do a better job of prioritizing - tending to her management before housecleaning, etc.
thanks for the comraderie! take care,
Yes, there are some, but we don’t need child care. My husband is home when I work, and manages her day to day. However, I’m the one that maintains the medical records, makes the appts, reviews her data and changes her pump settings (as well as my own) and manages most other aspects of our home and finances. My hubby has not demonstrated that he is willing to do more. This is the original of my overwhelmed feeling.
thanks for sharing your story, I know time will also make some aspects easier.
You are totally right and I hadn’t thought of that. We have a nursing program in town. I’ll give it some thought.
I"m not sure what’s available in your area, but you might want to see if there is a support group for parents of kids with diabetes or for adults. If nothing else, it would be person-to-person support though they might be more informed about what’s available to you locally for assistance.
If you belong to a church you can also ask for help there with day to day kind of stuff, which could free up time.
You might also want to check with the various pharmaceutical companies that you recieve meds and supplies from to see if they have patient assistance programs for people who can’t afford their medications and what their eligibility requirments are.
Sorry I couldn’t be of much help, but hope you keep strong!
I don’t imagine there are any assistance programs. But I do think that hiring help will be easier than taking a pay cut. Also, it shouldn’t (ideally) take too much time to adjust her settings, though I imagine that with 5 kids it takes up what little time you have left. I would also suggest working regularly with your CDE. Instead of trying to figure it out yourself, I would fax regularly to your clinic to have them help with some of the work. That’s part of why you pay them!
Also, if your husband is unwilling to help with the health of his daughter, that sounds like a bigger underlying issue. Family counseling may be needed in order for him to get the fact that this is his daughter’s health too. He may feel that you are better at it because you’re the one with diabetes. He may be scared of screwing up, and most men don’t like to discuss their fears! But it’s necessary… don’t give up!