What should I realistically expect from my parents as support?

I'm 25 and finally can't work anymore because of my condition. My family hasn't been too financially stable for years now due to several reasons. We're just lower middle class. We get the bills paid and could live comfortably if Lyme wasn't a Healthcare disaster.

They have the greatest of intentions and would do anything to see me well, but I guess I don't see them trying hard enough. They will pay for anything I need if they have the money. But their problem is useless spending and not saving. I won't go into details, but I'm basically having to eat junk food because they honestly don't know how to eat healthy. Or don't care. I've stressed that my diet is important but it's like they can't grasp it.

They know how much I suffer, but they don't understand why I worry all the time. I guess you must have Lyme to truly understand when you can't provide for yourself. And a lot of Lyme treatment is a money sink. But at what cost do you put on your life and well-being. I may be surviving but I don't feel "alive".

I've tried to educate them as much as possible but it just doesn't seem to click in their heads. They know all the basics of Lyme and how uncertain things can be. They're just not efficient with money and it affects me.

My parents are good people but cant comprehend the big picture of what I'm going through. I understand they must live their lives and I would be homeless without them. Ultimately as parents, they don't go out of their way to make life easier for me despite loving me unconditionally. I guess I just expect more since they brought me into the world and now I'm at my wits end. It's putting a strain on our relationship.

I don't resent them, but it hurts me to see how things could be easily better.

Is it unreasonable to expect more since they are my parents? Maybe I am being unreasonable. I appreciate everything they do for me but sometimes it's not enough, when it can be better without TOO much effort.

Maybe Im just trying to blame someone for my suffering. Idk. It's not right, but I don't exactly think too straight these days.

Each generation does the best they can, and you hope that the next will do better! It's funny/ironic, how I often hear the other side of this here with LD parents trying to get their kids to eat right, and having them rebel!

Anyway, you are right that dumping sugar/etc in the gas tank will make the car run crummy! Can you accompany your folks to the grocery store, & throw a few things in the grocery cart?

Or perhaps, can you write it down in a very personal way (like you did here, but without blame), & express how very important it is to you, & for your healing to have________ items. Writing it down, along with expressing gratitude, could make it more understood(?).

Post Edited (happyjo) : 6/2/2015 6:10:41 PM (GMT-6)

If they see you eating mostly what you can, protein and vegetables, they may start working around what you can eat. Maybe you can share with them a few new items that would be good, like making cauliflower potatoes instead of real mashed potatoes. Some dietary changes do not take extra money, just some switches.

I think it is hard for anyone who has not had Lyme to realize how multifaceted the disease is. Nothing like they have experienced ever. I thought I was dying for the first 6 months. I had been in the hospital at first with only 3 days IV antibiotics but was not diagnosed even though my PCP called in an ID doc for possible RMSF and I showed him my bullseye rash.

I went back to work self-employed after those 6 months, one day working, two days in bed. It was hard but I needed to work to supplement our income. I became stronger and was up to 4 days a week when 2 years later I was diagnosed and briefly treated. After you heal more maybe you could do a bit to help with purchasing the food and supplements you need.

I feel for you, Lyme is really hard to live with and it is frustrating that the ones right under your roof love you but can not understand what you are really going through. My husband and adult children love me but still after all these years don't really get Lyme. That is why I come here for information and support. And mostly have self treated for many years.

I feel for you, I'm 27 and have had some pretty rocky times with my parents because I've been financially dependent on them. Fortunately I got disability a year or so ago so that's helped a lot - they still help out with a lot, but it's eased some tension.

I've had a lot of issues with their spending/lack of saving as well. Nothing too extravagant but it stings to have your parents go on vacation when you can't get out of bed when that money could buy you IV nutrient therapy...and it stings to have your mother complain to you about not knowing which new place mats to buy when my clothes have holes in them! Each person has their own issues and reasons for drawing their lines where they do. My mother's got her issues...I personally think she would be just too angry if she had to sacrifice any more for me. I know she loves me and she wants to help me, but our parents are people too, and as much as they'd do anything for their kids...it's got to be incredibly hard to have to make sacrifices you never thought you'd have to make. It's a really delicate subject, but this disease affects the whole family.

At one point I got in a huge fight with my mother over money and moved out - they'd just gotten a government buyout for their house because it was in a flood zone, I asked if they could give me a small portion of the money for treatment since they could easily downsize their house with just the two of them, since they didn't NEED a spare bedroom or a built in pool...

As far as the food...how independent are you able to be with preparing your meals/getting your own groceries? I pretty much had to prepare all of my own food once I started eating healthier - if you're not able to do that much on your own could you maybe research a few recipes and ask your family to make them?

I know there are no easy answers, but do what you can not to let the emotional toll of this situation wreak havok on your body.

Another suggestion would be see if you can help out in the kitchen with the food prep? That might put you in a better place for making suggestions on how food is cooked and might get you away from the greasy foods a bit more.

I agree with Happyjo about asking for some specifics and then going along with them to the store too.

It's more likely they don't know what to do or how to make the changes. Of course, they may not wish to eat that way, so you may have to take up cooking for yourself. I frequently fix different dinners for hubby and myself.