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Crohn's Disease Forum » Parents of Kids with IBD » Financial planning for your sick kid


 
03-28-2013, 08:51 PM   #1
Amy2
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Financial planning for your sick kid

We're very middle class, yet I feel a tremendous desire to set my young son up for life. Now that he's sick, I don't ever want him to 'have' to work.

We're planning on downsizing in the next few months and have changed our retirement plans in order to make that happen.

When he found out our new plans, he was relieved and incredibly grateful.
But, nothing means anything to me, if he isn't taken care of.

Anyone else doing something similar?
03-28-2013, 11:15 PM   #2
DustyKat
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I must admit that I have never thought of doing this. I have always thought of things a bit the opposite way...ensure they have an education that will allow them to pursue the type of employment where their disease has a lesser impact on their ability to fulfil their responsibilities.

What do you mean by...taken care of...as in what sense, financial, medical, both? Or am I reading this all wrong?

Good luck with your plans! I hope all works out as you wish.

Dusty. xxx
03-28-2013, 11:26 PM   #3
Clash
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Dusty, my concern is what you described. I find my mind swirling with different educational/career paths that may lend to more flexibility. I read about so many members' kids being so driven and motivated. C strives for A's but he rarely looks past the next Friday night! He's out and about doing his teenage strut and I'm at home wondering if I could convince him medical illustration is a wonderful career! The careers get more imaginative by each glass of wine!

Amy we have tried to start a fund for expenses related to medical and such for him when he is out on his own.
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
8/2014 ileocecectomy
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03-28-2013, 11:37 PM   #4
DustyKat
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Keep drinking Clash! Who knows what fab ideas you could come up with for us to steer our kids toward!

Sarah became very calculating and towards the end of high school she had everything worked out to the last little detail. In other words she did not do once ounce more than she absolutely had to to get into uni and the course she wanted! Hence there was plenty of socialising along the way. So don't despair Clash! Sarah was very casual, it was only me that was having a litter of kittens everyday!

I was wondering if this had something to medical expenses and the like.

Dusty. xxx
03-29-2013, 05:14 AM   #5
Amy2
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I can't protect him from the disease, but I can protect him from having to pay for it and I can protect him from having to work when he is feeling bad. We're just going to have to live very frugally in retirement, so that we can leave him enough to live on.

His education has suffered because of Crohn's, but I'm sure that if he continues to feel good, that will all work out just fine and he will have some nice career choices. He is a very compassionate person and is considering becoming an R.N., like his big sister.

He wants to finish school and have a career, but I want him to know that should he need to take time off or stop working entirely, it will be an option because he will have $ in the bank.
03-29-2013, 05:36 AM   #6
rollinstone
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I wish my parents could assure me the same haha but as I'm 24 I'd feel too guilty, if they were millionaires it'd be a different story, I hate the uncertainties of the disease, but I'm really hopeful of the future years in regards to better treatments, all I know is once I'm better I'm not gonna let anything hold me back
03-29-2013, 06:01 AM   #7
AZMOM
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I love that you're planning. Im just getting one foot in front of the other and trying to pay a mountain of omnipresent doc and hospital bills.

J.
03-29-2013, 09:03 AM   #8
QueenGothel
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We have downsized greatly! This all happened before Rowan was symptomatic. We have ditched our mortgage and dipped into the 401k to pay for our house outright. We have to pay ourselves back with interest but rather pay ourselves the interest than a bank. It has defiantly been a struggle finding funds when we need it though. But owning our home is a step in the right direction. Sometimes though I think about hindsight and if we didn't uproot Rowan from her childhood home if we could've avoided that first flare. I was so stressed out doing the short sale and when the house sold it, the bank was like get out you have 10 days. In the end I know we are all better off. Before long we can start setting our money aside for education and their future as well. But I am not willing to just hand it over. She will still be required to do some work for it so long as she is well.
03-29-2013, 09:21 AM   #9
Amy2
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I love that you're planning. Im just getting one foot in front of the other and trying to pay a mountain of omnipresent doc and hospital bills.

J.
I sympathized with your situation. My son is newly diagnosed and so the bills are relatively small, but they could certainly become an obstacle to our plans. We can't save for him AND pay out $20,000 every year for his medical care.
03-29-2013, 09:47 AM   #10
my little penguin
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WE just save for education and have since birth so he can chose to study whatever he wants.
WE have not planned to fully support him without working the rest of his life.
WE will help later if he needs it but he will have to work.

There is no reason for him not to work. His current job is school which he attends even when he is not 100% - just how it is since as you said he will have this for life and we are putting coping mechanisms in place for later.
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03-29-2013, 12:23 PM   #11
izzi'smom
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^^ Agreed. I don't even plan on paying for dd's education.
I think that taking out loans with the intention of going into a career that will allow her to pay off her student loans will set her up for financial planning for the rest of her life.
As a single mom, if I am able to help her, either while in college or with her loans after, I will. It can't, however, be at the expense of my retirement.
I paid for my own college. Twice. The first time I lost a lot of money due to my own stupidity, and I had to make up for it the second time. I am planning on going back to school again.

If I was wealthy, it would be a different story. But for me, her having a wonderful childhood (with a few trips and a decent house) is just as important as her future.

Besides, one of us will find a cure soon.
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03-29-2013, 01:36 PM   #12
Tesscorm
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I have thought about medical costs when Stephen is an adult but thought more than we would help with medical costs rather than living expenses. I am hoping that he will always be able to work and that his work will allow him some flexibility. He is interested in finance/business and working from home/home offices are becoming more and more acceptable, making it easier to accommodate when not feeling 100%.

What I am hoping to do though, is leave some sort of medical trust (that I suppose could be used for living expenses?? hmm, have to think about this! ). But, what I've become concerned about is the ability to obtain necessary treatment for a loved one if that treatment is 'not covered'. When Stephen was prescribed his EEN formula, it was not covered - neither by our provincial plan nor our insurance. We were lucky that a regional agency picked up the cost but, otherwise, it would have been quite expensive. I don't ever want my children, grandchildren, etc. to not receive medical care they need because they can't afford it.
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July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
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03-29-2013, 05:38 PM   #13
Jmrogers4
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The boys have a small college savings plan certainly not enough to pay for college but enough to help.
I have to agree with Tesscorm, I don't want my children to not have or put off medical procedures because they can't afford it.
I'm also with Izzi's mom, with all these brilliant children they will find a cure.
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Husband dx Crohn's 3/1993
currently none due to liver issues
03-30-2013, 01:12 AM   #14
Amy2
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Our mortgage is nearly $3,000 a month and since our other kids have moved out, my son, husband and I are going to move down into our very nice, 2 bedroom, 900 square ft basement and rent out the top 2 stories for $1,700 a month, which will be the majority of what we can save for him. We will also continue to save for our retirement every month and take the occasional trip and hopefully, we will find some nice, responsible renters!

That's my only plan so far.
03-30-2013, 02:43 PM   #15
DanceMom
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I can only hope and pray that whatever diagnosis A receives in addition to asthma does not interfere with her ability to work. At this point she wants to be a first grade teacher and a judge for dance competitions. She's a hard worker.

A is used to going to school, church, gym, and dance when she isn't feeling 100%. It is what she knows and I've never allowed her to make excuses for her illness. She's had her number held while she quickly ran to the backstage bathroom and it didn't phase her performance. She's competed between breathing treatments and while on a clear liquid diet. She's vomited on the way to school and insisted that I keep driving because she had work to do when she got there. She may have a better work ethic than I do at 8! lol She's a determined little thing and I don't see too much stopping her.

That being said, she will always be my baby no matter how old she is and we will help her financially if the need arises.
03-31-2013, 03:12 PM   #16
Amy2
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I was inspired to start this thread, after reading in the adult section, here. So many adults with degrees, cannot work, or are miserable at work because they are sick.

And my youngest is the sensitive type. I think the disease may be all he can handle, at times.

I was looking at those tiny homes - the ones that are 100 to 300 square ft. and they can be purchased for under $30K. If he's interested, when he decides to move out, we would like to buy one for him. Not having rent to pay, would be a stress reliever. He likes the idea now, but who knows if he will in a few years?

If we can, we'd like to provide all of the basics: Housing, food, clothing and medical care for life. Nothing fancy.
03-31-2013, 04:05 PM   #17
LJS
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How old is your son, Amy? My son is 9, and I guess I feel a bit differently... while I am a single mom, struggling with being the sole support for my 2 kids, I cannot imagine my son not living a full, productive life, which includes having a job, family, etc.... Crohns is a horrible disease, and I know how it ruins lives, in so many ways (financial just being one of those ways). Yet, I tell my son every single day that everyone has "something" they have to deal with, be it Crohns, cancer, whatever.. and while his stomach hurts, he has to put that pain in a box and move on. I think it's too easy to let the disease control your life if you let it. I won't let his disease define him - or what he can do with his life. I wish I could make it all right for him, and make it so that he would never have any financial worries.. on the other hand, that is all part of life, and living a full, productive one at that...

I admire your ability to be able to plan for that future, however.. more power to you!!
03-31-2013, 05:34 PM   #18
Amy2
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My son is 16. When I was 16, the idea of supporting myself was daunting and I was healthy. Before my son was diagnosed, he'd expressed similar concerns. And it seemed to really make him feel better about his situation when we told him of our intentions. It's almost like he didn't realize what he meant to us. And along with feeling better physically, it seemed to help him become enthused about school, friends and life again. I just hope that we can pull it off!

I know this isn't a choice everyone can or should make. I grew up with a single mom and 3 siblings.
03-31-2013, 05:58 PM   #19
rygon
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Personally I would hate it if my parents tried to give me a free ride. They certainly helped me throughout life by giving advice and bit of money here and there, but I think the purpose in life is to learn and stand on your own two feet.

I love being independent and accomplishing things on my own, as Im sure you are. If you get everything in life you do not get to learn value of things, which will not help him in later life.

I dont think moving out would be a stress reliever either as im sure you would allow him to live with yourselves until he can afford a place. I think the best thing you could do is lend him the money for a place at a smaller interest rate than the banks (or interest free). This will help him a lot whilst realising he does have to look after himself through thick and thin (what will happen when you are not there?)
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03-31-2013, 06:34 PM   #20
DanceMom
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I really get what you're saying LJS and I agree. It is easy to feel sorry for my little one as she goes through countless tests and medications, spending hours in the bathroom feeling yucky. But my pity won't take her very far in life and she must learn to deal and move on. I think keeping her very involved in dance helps her to focus on each day and realize her true potential. This past competition both of her dances placed first overall and just a few days earlier she spent all night in the ER after a cleanout failure and several days on a clear liquid diet. She's never been more proud to accept a trophy. And while I realize that school, church, and dance at 8 years old isn't exactly holding down a full-time career and managing a household, I do feel that I'm helping her build a strong work ethic and a determined personality that will hopefully carry her far in life.
03-31-2013, 06:59 PM   #21
LJS
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DanceMom,

I totally agree.. and while I believe each of us, as parents of a child(ren) with Crohns would do everything in our power to take this horrible disease away from our children, we cannot change it. All we can do is give them the tools to deal and let them know they are expected to live a full and productive life. That their disease does not define them, nor can they use it as an excuse to not achieve their potential.

I expect my son will get through elementary school, middle school, high school and go on to college (and maybe post-grad) - and work and be responsible for his own future, etc.. I will help him in any way I can, but I do not believe in enabling my children so that they feel entitled.. I'm horribly sad about this disease, but I refuse to allow my son to "give in" to it..

Now, this is just how I believe, and I respect each and every one of our decisions to do what we feel best for our own children.
03-31-2013, 07:08 PM   #22
Amy2
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When we aren't here anymore, he will have his house and some money for his basic needs. And I think independence is a complete illusion. We all got help getting where we are and there is so much luck involved in life. I'd hate for him to suffer materialistically, to the point that he has to worry about meeting his basic needs on top of everything else he may have to deal with. I certainly don't see this as giving into the disease anymore than I see sleeping in a tent, giving into the weather.

I would have loved it if my parents would have set me up. I have had to make some bad choices in life due to a lack of $.
03-31-2013, 08:28 PM   #23
my little penguin
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I think it is a personal decision .
We look at it differently since DS has more than just crohn's going and had a lot if these things a long time before his Ibd dx.
None of his medical stuff has altered our plans .
One doc put it best
You can either have a sick child or a child with xyz
Sick child you pity / feel sorry for make excuses for etc.
A child with xyz you comfort and make plans on how they will learn to cope and survive as close to normal as possible.
Amy2 I know what you are doing is with the best intentions .
Just as many parenting decisions what works for one child may not work for another even in the same family.
I am glad you found a way to give yourself and your child some peace .
Has your son seen a counselor to help him deal with the anxiety side you are seeing ?
04-01-2013, 01:27 AM   #24
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Amy, I understand where you are coming from. My 18 year old has PANDAS, an autoimmune disorder that attacks the brain. He has lost 50 IQ points, developed Aspergars, Tourettes, ADHD, severe fatigue, and now this stomach issue. He will always need some kind of oversight to live independently. I'm terrified that something could happen to me and my husband. We are his court-appointed gaurdians and conservators.

It may not be fair, but we have communicated to our 2 other younger teens that they are to look after their brother when we are gone. We have gone out of our way to give the healthy children a normal childhood and plenty of individual attention. They will tell you that they never felt slighted because of their brother's health issues. Family has always come first--that's how they were raised. We expect them to live that out as adults.

Our healthy teen plans on becoming a dentist. We are saving money to put him through college so that he does not start out his life in debt. We don't believe in debt. We are solid middle class living within our means. Hopefully, our son's siblings' finances will be such that if our struggling child ever needs help after we are gone, they could help out.

Now, that said, our struggling teen wants to live on his own but within 10 minutes of us. He expects to work, but doubts he could manage full-time. He has missed 75% of high school due to illness. There is no cure for PANDAS when it has gone on for as long as it has with my son. This is his life.

We encourage independence, but realistically even the state of WV agrees that he will need oversight. Beyond helping him maintain some self-sufficiency, and asking his sibs to step in when we are gone, we are hoping to start a trust fund for him. It will grow very slowly while we put out for college, but I hope to be around for decades to fund it.

One more thought, it is very likely that your son will find a mate to go through life with. This person will be there for him when/if times get tough. The burden may not always be on you to pick up the slack.
04-01-2013, 01:15 PM   #25
Amy2
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Yeah, it is a personal decision.

We didn't do similar for our oldest. She was 24 when she was diagnosed and we paid for good health insurance for her, as she hadn't graduated college, yet. I know it gave her a sense of security, though she hardly used, she stayed so healthy.

But, we didn't set her up. We did what we could for her, at that time.
04-02-2013, 06:52 PM   #26
CarolinAlaska
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I really get what you're saying LJS and I agree. It is easy to feel sorry for my little one as she goes through countless tests and medications, spending hours in the bathroom feeling yucky. But my pity won't take her very far in life and she must learn to deal and move on. I think keeping her very involved in dance helps her to focus on each day and realize her true potential. This past competition both of her dances placed first overall and just a few days earlier she spent all night in the ER after a cleanout failure and several days on a clear liquid diet. She's never been more proud to accept a trophy. And while I realize that school, church, and dance at 8 years old isn't exactly holding down a full-time career and managing a household, I do feel that I'm helping her build a strong work ethic and a determined personality that will hopefully carry her far in life.
This gave me the chills. I'm in total agreement that your daughter earned that trophy and I'm very happy for her.
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
04-02-2013, 10:04 PM   #27
Brian'sMom
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Our son says he's going to be a 'Good GI'! (Out of the mouths of babes...sorry current GI's!! ) I told him, study hard...get a good job with good insurance!!
All our crohn's kids are fighters!! I agree one will find a cure and we can say, "I knew them when they were so young!"
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symptoms 2005, official dx 6/2010

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04-02-2013, 10:10 PM   #28
my little penguin
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Cool Kathy
DS wants to be a pathologist so he can get dx right
Maybe they can go into business
04-03-2013, 09:34 AM   #29
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These are the most amazing kids, I think they can do anything they set their mind to!
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04-03-2013, 09:54 AM   #30
Amy2
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I'm sure the parents of many of the adults on this board thought their kids were amazing, too, but now their kids want to quit their jobs because they are suffering so much. Or they have already been fired, due to missed work.

I just read a heatbreaking story about a man who has to take meds that make it harder to remember things and so he forgot to do something at work and got screamed at by his boss for several minutes!

I'm going to hope for the best, but prepare for the worst. Some of our kids are not going to be able to work, just as some of the adults on this board cannot work. Until they find a cure, that is just a sad reality.
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