30ish pumpers - your point of view?

My adult son (32) was dx at 6, started minimed pumps at 18 as he began college. He is now 32, happily married for 2 yrs, great job for the last 10yrs, no discernable diabetes complications after 26 yrs. Never been hospitalized for any lows or highs or illnesses.

So the problem: his fairly new pump broke a week ago, he put on his last one (also broken, plastic he glued together himself) and keeps putting off calling minimed to send him a replacement. He knows HOW to do this, just is NOT doing this. His wife is mystified as to why he won't just call. She is concerned his cobbled together pump will malfunction but she knows this is his issue.

I am too much past parenting to get involved, but do any of you have a perspective on what the feelings are behind this kind of behavior? Diabetes burn out? He doesn't much care for his endo but dutifully goes to get his prescrip for insulin renewed every 4 months. He takes reasonably good care of his management but has never been a fanatic about his control, though he excercises, knows a lot about nutrition, and has never been overweight.

Any insights appreciated.

Thanks -

beenthere

 

First of all, Let me give you credit for not trying to "take over" and get this done for him. (Because I know my Mom would have!!)  

It could be burnout, or it might be like you said, he doesnt get along well with his endo... who knows.  Maybe he just doesnt want to get "yelled at " by others about how to take care of his pump.  I have had T1D for 34 yrs also dx'd at age 6, but I was never put on the pump until this past year.  I too use the Medtronic pump.  They are excellent with me anytime I have an issue with the equipment or even stupid questions that I call them with 24/7.  Im sure if it doesnt work, he will call and get it replaced.  Be strong Mom and know that he will do the right thing.. you brought him up that way!!

my first impression "so he's 26 years into a life sentence, with no chance of parole.  "

I suppose this impression hit me for a reason, I am just not 100% sure what it is =)  to tell the truth, unfiltered:  I hate my pump.    I hate having it tied to me, I hate sleeping with it, I hate that it costs 7 grand I hate the alarms, I hate the low reservior warning, I hate getting jabbed by rolling over, I hate when it jams between the seat and the seatbelt, I hate tubing, I hate no tubing, I hate battery indicators, I hate infusion sites and sticky tape.  There are times when I am just plain angry with my pump.

I snapped the belt clip once and I laughed.  no one was around to hear but I still said. out loud.  "you deserved that". Another time, I was cleaning the crud off my pump and I had the vision of hurling it at the wall.  I didn't, because at that very moment I remembered that I hated manual injections even more.

misplaced anger?  yes. but who on earth are we to be mad at, once in a while?  I guess it's burnout, if it needs a label, but in my life, my exhaustion, frustration, paralysis, anger, acceptance, "compliance", and gratitude are all cyclical.  every once in a while when the planets are aligned just right, I get the urge to fling my meter out a window of a 50 story building... or at least off a boat, because it's a blood sugar meter.

anyway, even though I might get moody -  I'll still show up for work.  and after (for me) 34 years into a life sentence with no chance of parole, I will not only get testy once in a while,  but I'll also put off the cardio visit, or not go get that dumb thyroid sonogram, or reschedule my endo visit for the following month, or wait until I am completely out of zocor, or whatever.  These things happen.  It might be confusing for a parent or primary caregiver, but for me I get it, it's hard to keep it all up, perfectly,  forever.  

Well said Joe!!!  

I thought for a moment of "doing the corona commercial" and whipping mine across the pool or out into the ocean on NUMEROUS occassions!

I think you might have take a script out of my book lol

*Taken

Thanks, Dawn, Joe, and Valerie, for being there so quickly and replying. I DO understand that anger: it makes so much sense to me, even as just as a bystander all these years.

And here's what you did for me: you reminded me that my son is handling this just fine right now. No matter what it looks like, he's been immersed in this 24/7 with no time off. Ever. Through sickness and  in health, he's been doing it all since he went away to college. I will continue to keep my diabetes distance but be kind and supportive to my son and daughter in law in other ways.

I spent a lot of years running support programs for parents of type 1 kids; today you made me feel llike I really got paid back! Thanks so much - a little realistic perspective goes a long way towards calming me down.

 :~}

Maybe heis worried he did something to break the pump and doesn't know if it's covered under the warranty.  I had that concern a couple years ago when I dunked my pump in the pool; wasn't sure if Minimed would send a replacement because it was my fault and I didn't have $5,000 for a new pump.  Thankfully the Minimed warranty is generous and they understand that pump is worn 24/7 and gets abused.  

Like you all have said, we all handle diabetes differently.  Nobody does it perfectly, but we figure out what works for us.  Your son is just doing it his way, as frustrating as it may be.  

Think every parent and adult child has this issue, whether it's about diabetes or something else.  My mom always says, "Your hair looks terrible!"  and tries to recomb it like I'm a child.  Used to bug me until I saw my grandma do the exact same thing to my mom a couple years ago.  Guess we never stop being moms.  =)  

Your son will do the right thing according to him, when the time is right. My mom would always ask "Did you test today?". That proved to be very comforting as I grew older. When a teenager, and young adult, "yes mom". Perfection with this is not a possibility as far as I am concerned. But I do try the best I can, most of the time. And the best, is what I think it to be, and no one else. A good relationship with any Dr. is important. Can't say I have ever had one that simply just pissed me off. A little push from my CDE is always welcomed. I actually look for that, so I may avoid a deep burn-out period. With no vacations, it can get hard, and I have come to terms with the fhis fact, and accept things for what they are. Even yesterday when my BS sky rocketed to over 500, probably due the stress from putting our family dog down the day before. made me feel like crapola, and I still needed to get to work. Be confident with your upbringing, and things will work out in the end.

Jed

I see this is an older post but just reading this is a sigh of relief for me.  I've been T1 since 1991, age 11.  I've been pumping since 18, started when I went away to college too.  The burnout, frustration, stress, anxiety and anger from this full time lifestyle has gotten to me lately and just reading these posts helped me realize that I'm not the only one.  It seems like there are times that anything I do doesn't help and I always run high.  Then there are times it seems that no matter what I eat and do, I'm in my range.   Those are the periods I always enjoy and feel the greatest!   This disease just takes so much energy and time, that it's good to read that others deal with this too!

My mom has stepped back too, but she will still text me to ask what my a1c is and how my endo appointments are!  It always helps to know that mom is still connected to what she helped me learn how to control years ago!

I am beginning to think the infusion site has a lot to do with how our BG's run. I had a couple of weeks of being about 200 no matter how much insulin I took or what I ate. then I decided my favorite sites were no good even though I rotated etc. I am now using my butt, which I never used before and my BG's are under 100 no matter what I eat (not really-but almost).

I agree!  I've been told that after awhile, scar tissue develops and that affects insulin absorption.