posted
My daughter just turned 20. She has been mostly bed bound for 5 years. She just finished a year of IV and most symptoms are gone.
Except not having a life! No friends, except one.
Her Dad died from Lyme and Cancer last year.
She is depressed. On meds.
Today she tells me she is sick of her life and wants to move and start over all alone.
She tells me she won't get well and feels that she will be stuck in bed forever if she stays here. Out of necessity I have waited on her hand on foot through her illness. She thinks its easier to move and HAVE to support herself than to try and create a life here.
It breaks my heart. She's missed so much of her life. There is nothing more i want than for to be happy and healthy and thriving living her dreams.
She hasn't even graduated high school yet. She was a 4.0 student, had tons of friends, very athletic and had tons of interests. Then Lyme hit hard. We've battled it and I really think that she's mostly well.
She tells me if she stays here she feels like he won't make it. That whether or not I support her she is leaving ASAP.
What di I do? Let her go? Everything we've tried here hasn't worked as far as finishing school. Etc.... She needs some personal successes. I am scared. If I make her stay, what if she gets even more depressed? Kills herself even? What if I let her go?
I feel like I should let her try it. I can only imagine how hard this has been for her. I am lost. Nobody to talk to. Please sound in.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
The sad thing is that she can't run from her problems and her life. There is no magical place that's going to make everything all better...but, the even harder thing is that she has to learn that for herself.
I thought that for years myself...and I'm 39! If I could only get out of this miserable state, I would be able to heal. Wrong. I would still be sick...just in another state.
Are you guys able to go on a short vacation to just forget about the serious stuff for a little while? I know that sounds silly, but you guys have had some major, trauma in this past year.
My own daughter is 16 and she spends most of her time at her dads because my house is just too much like a nursing home. It breaks my heart, but it's hard on teenagers when everything around them is about sickness.
posted
Wow. I can imagine your fear is strong!!! But you know, neither of you will know if she can do it unless she tries.
Can you arrange for her to be within a few miles of you so that if she gets sick you check on her more easily??
She may need to make the break and then ask for help if she needs it.
But .. I'm not a parent!!!! So maybe I am clueless.
This may be her breakthrough. Has she had counseling??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Not sure what to say except that I will keep you in my prayers.
Lax mom and tutu both gave good advice.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Heart breaking lymemom, what this disease can do to a family. I am so sorry for all you have been through. You have done well caring for and protecting your daughter. It is such a tough call.
But it seems your daughter is reaching out for the opportunity to be independent and to see if she can manage on her own. I like Laxmom's idea to try to go somewhere together on a vacation if you are able. I also like Lymetoo's advice to encourage her to get out on her own but nearby, so if she needs your help, you are not too far.
See how her first year out of the house goes... It is difficult letting them leave the nest even when they are well. This has to be so hard.
Chances are your daughter has watched how hard you have worked to keep her well and she wants to do more for herself now, hopefully feeling stronger. And she doesn't want to lose you too.
I hope you can go on that vacation together. You both deserve it... Maybe she will blossom into a very independent adult who surprises you with her resilience. Good luck with this.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Hi everyone. Thanks for the ideas and support. I didn't mention in my post that she wants to go 1500 miles away. Chase her dream as an actress. OMG! Says she's going whether I help her or not. My first suggestion was a local apartment. Graduate high school. Then if she does well, move next fall. She is feeling disparate and nothing I say is getting through to her. This is really scary!
It just dawned on me that she is treating Bart really hard right now, which includes Flagyl. Really hoping that this is a herx and her brain dealing with toxins and die-off. We see our local LLMD Tuesday. Hoping she can help.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Maybe you could somehow communicate with her LLMD before her visit on Tuesday to let her know what is going on.
This could very well be a symptom of her illness/herxing and the doc might be able to explain some of this to your daughter so she doesn't do anything too drastic.
She might also make some med or supplement recommendations such as lithium orotate to see if it might stabilize your daughter's mood and behavior...
This can't be easy! Please keep us posted.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Oh, that is not good! I can tell you that flagyl caused terrible depression for me. Few escape its clutches.
Doesn't sound like she is thinking rationally. A healthy person would have a difficult time being on their own 1500 miles away from family and little to no income.
Has she had ANY acting experience locally??
How about her father? Can he help convince her to slow down?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the lyme social worker SB does phone consults. when my kids wanted to make their own medical decisions i said they each had to sit down with her first. i needed to know they were getting good info "not from mom" and then i knew i had to back off.
even if she gives limited help to your daughter i bet she could really help you.
i agree some of the decisions your daughter is making seem a little off-unrealistic. but shes 20. is she considered independent? do you really have any say? SB is great.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Sounds very, creepy, similar to my daughter...it could be because she has been ill with no young-person-type life.
My daughter did the same thing...went on adventures half-cocked...but I believe if things had been more "normal" she would of been a bit less impulsive...like a kid who was denied candy and then gorges when the opportunity arises.
We didn't have much choice but to let her go...it was soul-crushing...the fear for her tangible...the uncertainty life-draining.
Scared that she wouldn't take care of herself and she would relapse...and that happened...was she rational?...was her illness going to effect her reasoning...it did.
It was a extremely difficult time...she came out on the otherside, though...wiser, sicker, and understanding that she needed to take care of herself or else she would have zero life.
Fast forward seven years...she is now 27...healthy, married, working and very mature and thoughtful.
Yes, she had to go to the school of hard knocks and we had to let it happen...what made it an extreme exercise in growing up was the Lyme...that brought it to a whole new level.
I totally feel for you..I have been there.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Thanks everyone! I wish her father were here. He passed away last December from Lyme and cancer.
Mom- can you PM me your email? I'd like to hear more if you don't mind.
lP- can you PM me SB's contact info?
Good idea. Yes. I am calling before her appointment to give the lowdown.
I appreciate the ideas and support. More than you know. For the first time since we started this dance 5 years ago I don't know what to do or where to turn.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That's tough. We went through tough times with our daughter as well. We were open with her and told her that she would have to support herself if she moved. We told her we just couldn't afford to support her outside of our home (rent, insurance, etc), but that she was welcome to live with us. Eventually, her desire for independence made her run.
Girls at a young age desperately need to feel independent so that they can feel strong and confident. It's normal to want to start living their lives away from their parents. It's a healthy goal, but in her case, she's ill. It's not really rational at this point in time with her being so sick.
Part of wanting to be an actress and become famous is also something a family member of mine wanted. It turned out to be a sign of bipolar/schizophrenia--not that your daughter has either, but it is something to be aware of. I think bart triggers it for some people (genetic component).
You might take your daughter to her lyme doc and tell her doc that she wants to move away to become an actress, and ask how will the move affect her lyme. His response may dissuade her. He might also suggest it's bart flaring on her, and suggest she stay put and rest.
If she resists, I probably would tell her a metaphor that relates to her situation (ignoring real issue, grass is greener sort of thing). Maybe think of a movie you saw where it didn't work out. Then I would tell her that running from her illness or any problem never works for anyone. If she still fights it, then at least you planted the seed.
Hopefully between you and her doc, she'll realize it's best to stay put. If not, you will have to let her go and wish her the very best. It's sad, but it's her life to live even if she has to fall down or slide backwards with her health.
Hang in there.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
LymeMom... I'm so sorry that I asked about your husband. I'm getting senile and totally forgot. Read it .. forgot.
My apologies.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"Fast forward seven years...she is now 27...healthy, married, working and very mature and thoughtful."
momindeep...i guess we have both been thru similar situations. i have a boy 29 and girl 28 that did what yours did. they are still struggling in some ways...its hard to work enough to get by now...or one job requires 60 hrs a week...but they are stronger than me, smarter than me and with really good spouses...so many of my fears are gone.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Are there any local theater groups? Maybe if she could get involved locally she could see if she really has the skills and focus needed to become an actress that would help.
You may have to compromise and maybe get her an apartment close by if she would agree to at least take her GED and give acting in local theater a try first before making such a long distance move.
Also maybe there is some other family member she would listen to such as a favorite aunt or a cousin that might be of help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
This has to be a difficult situation for both of you. For her she has watched her friends go off , begin their lives and pursue their dreams . Naturally now she wants to do the same.
After losing your husband I am sure it is very hard for you to let her go . If she does, is there anyone else a home? If not you will need some support as well.
It is hard enough to let a child go off but much harder with all you both have been through. This may be a new beginning for both of you. Perhaps as much as she needs to pursue her dreams, you also need a chance for new beginnings. Being a caretaker may also have helped to fill a void with the passing of your husband . Your daughter may need to see that she can do this. That she is able to function on her own. It is too bad she has to do this so far away. Is their an acting school near you that she could enroll in some classes, while going for her GED? Maybe if you both could sit down and discuss each others concerns as well as your hopes for the future it may help.
Posts: 1748 | From United States | Registered: Dec 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Kellye, as a mom of sick kids myself, my heart goes out to you. And for some reason, you having a very sick child just wasn’t enough. You lost your husband/her dad on top of that.
And now, not even a year after such a tremendous loss to your family, your young daughter has decided that she needs to move on with her life. And I am sure you are reeling from it all. After years of taking care of her, I am sure you didn’t see this coming. I bet you figured she’d just move on to the community college and maybe get a little job and find some way to socialize and make new friends and even meet a nice boy.
Then, whammo, you got hit with this. I really understand that your daughter needs to have some sense of accomplishment and independence, especially given her age and the length/severity of her illness. I also completely understand your fears and concerns.
So what to do? Lots of good suggestions have been offered by others. I would definitely reach out to S who was recommended by kayak.
In addition to that, if you can't go on a mini-vacation, I would take your DD out to lunch/dinner and have a “logistics” conversation with her. You could begin by telling her that you completely understand where she is coming from and that you know how very difficult her illness and her dad’s death has been on her and how you know that she needs a change and needs to pursue her dreams.
Then you could express that the two of you need to figure out finances and that it will take some time to do that (you are borrowing time here). If you have a finished basement or a spare room, you could suggest to her that she take that space and spruce it up with new bedding, etc. to get a change of scenery. If by some good fortune your parents or in-laws are supportive (doesn’t seem like it) and have a spare bedroom, maybe she could go live with them temporarily.
I would also encourage her to join local theater groups as someone else suggested. And maybe she could get a part-time job somewhere.
The other thing to do is to determine if there is a boy involved. You might not necessarily be aware if there is or not. I have found that girls who have been very ill are prone to falling for a$$hole$ because they are just happy to have someone pay attention to them and tell them how beautiful they are.
So a girl’s judgment can become cloudy when she gets involved with a moron. You will have to do some investigating to see if this is the case. You could ask her questions like, “so have you been talking online to anyone new?” “have you joined any online support groups?” “what are some characteristics you’d like to find in a potential boyfriend?” At her age it will be like pulling teeth to get some answers so you might have to resort to measures other than discussion.
During this difficult time, give your daughter as much love and support as you possibly can. Learn how to bite your tongue when she says something silly or tries to pick a fight. Try to remember that this won’t last forever and that ultimately she will come to understand just how much you love her and will appreciate everything you have done for her. Hang in there and take lots of deep breaths. I wish you and your daughter all the best.
Posts: 1885 | From here | Registered: Jul 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi LymeMom Kellye, First I'd like to say how sorry I am to hear of the loss of your husband, he must have been very young!
You got so much good advise about your daughter so I don't have much to offer.
I just hope everything works out for all of you, it's always tough when it comes to making chooses for our kids.
Good luck, I hope she stays safe and well....Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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