When your adult child has a chronic disease...

Parent Cafe
1

<p>What can/do you do to help? Do you provide emotional support, assistance getting medical treatment, research, physical caretaking, and/or financial contributions? </p>

<p>If/when the disease interferes with your child’s college studies, grad school or career, what then? Has your child faced employment problems due to his health? Has she dealt with job loss or applying for disability payments? If your child qualifies for disability, do you subsidize her housing, transportation or other expenses? </p>

<p>Would you encourage your child to live independently if possible, or would you suggest he live at home with you and your spouse (with or without his SO)? </p>

<p>If your child resists seeking counseling or support groups to help deal with the repercussions of her condition, what do you say or do?</p>

<p>If the condition makes it impossible for your child to follow his expected career path, but he could do limited and flexible work from home what options are available and how does he avoid work-from-home scams? What happens when your former honors grad/ career fast-tracker finds herself able to only get a customer service job working from home? If she managed to launch a career, how does your child deal with the loss of both prestige and ready cash that accompanied her previous career?</p>

<p>That feeling of euphoria from surviving the initial crisis is long gone…now the reality of a chronic disease has set in, and it’s not pretty. I’m struggling to find ways to help. Any advice?</p>

2

<p>Silpat- my thoughts are with you and your child. My wife was struck wit a chronic illness her last year in grad school. It has been very difficult for her parents. Her mom especially who happens to be a worrier. I do not think there is an easy answer. Individuals with chronic illnesses face a real burden. It is sad to say they give up a lot. My wife has had to recalibrate her life in so many ways. I think it is important for everyone to realize that there is a significant loss and find some way to live as fulfilling a life as possible. Your child’s life has changed they can still enjoy a full and happy life. It will just be different.</p>

3

<p>silpat, I wish you and your child luck.</p>

<p>A friend of mine has a chronic disease. He wound up having to drop out of college because he was in and out of the hospital so often. He finally has it under control now… He’s been living with his parents throughout the whole ordeal. He started his own business about two years ago and it seems to be going really well. He’s recently talked about buying a house. He seems scared about the thought of taking on a mortgage because he’s worried his condition will flare up again. That being said, he’s convinced himself that he will pay cash for a house and not have to worry about it… apparently has about 100k so far. I wish him luck in that… I told him he may be better taking a loan and keeping some of that money in the bank in case his condition flares up again… I guess we’ll see what he decides.</p>

<p>A girl that I work with came down with cancer right after she graduated college. She is about 26 or 27 now and has been in remission for about two years I believe… Stared working with us soon after. She moved in with her parents throughout the whole thing but just recently moved out and got her own apartment again.</p>

<p>There are many work at home jobs that are legit. My company has about 25 percent of it’s staff telecomuting. Typically they hire you to work in the office and allow you to TC after x amount of time but right now they are piloting a group that they will be hiring to TC right off the bat from home. If that’s sucessful they will roll it out in the future. Just because she was offered a work at home customer service job doesn’t mean thats a dead end (and I don’t think you should look down on it). You have no clue what amount of education people have when you talk to them on the phones. A very large majority of our customer service reps at my company have bachelors degrees and quite a few are working on masters degrees paid by the company and are making more then 40k per year. Some of them were promoted to manager and they manage a group of people who work from home as well. There is room for growth. It also looks good in the future for other jobs because it shows you are an independent worker.</p>

4

deleted

5

<p>Silpat, I am so curious, what is the chronic disease? Every one is different and yet alike. Cancer? Diabetes? *I’m struggling to find ways to help. * How you help relates so much to that particular disease. Best wishes for your daughter as she copes with these changes.</p>

6

deleted

7

<p>I would agree with limabeans that these things vary from illness to illness and even within illnesses depending on how well or poorly a person is doing. My daughter was diagnosed with a chronic illness five years ago, at the end of her sophomore year of college. Her illness made her quite ill before medication got it somewhat under control. However, she was able to stay in school and managed to excel and graduate with numerous honors and obtained what is widely considered a very demanding job and has just landed a very difficult-to get job that she really wanted. During the first year out of college, her treatment regimen failed and she had to switch to more aggressive treatment. She’s not in remission and contends with some pain, anemia and occasional flares, but her symptoms are controlled enough that she can work and function. If this was 15 years ago when this medication did not exist, she probably would not be able to work. </p>

<p>So that leads me to the first thing I do for her – I give money for research, I raise money and I advocate for funding for research. There is currently no cure for what she has, but treatments have improved dramatically and many people, like her, who previously would have been unable to work or face a higher chance of surgeries, lead rich and and complete lives. I’ve helped her by helping her find physicians both when she was in college and even now. I keep my ear to the ground, I have gone with her when she sees a new doctor (I don’t regularly go unless there is a big decision to be made and she wants me there). I’ve helped her become savvy about the medical establishment and insurance plans and, at 24, she can hold her own very well in medical settings. I was the one who discovered that the secondary insurance provided by the drug company that reduces her co-payment for medication from $150 a month to $5. </p>

<p>There is a wonderful organization for what she has, and there is a lot of education available at conferences, etc. and they are for all family members. I sometimes go and she has gone with me on occasion. We had an unspoken agreement for a while that she’d deal with being sick, and I’d be the worrier, by which I mean I would read the literature, get e-mail notifications, raise money, and do some of the thinking about it. As she’s getting older and now a full-fledged adult, some of that is changing, but I still try to stay informed, just as I do for my husband who has some health issues. She is very appreciative of what I do and expresses it. I try not to overstep and she tells me if I do and I back off if she says I’m overstepping. I think that’s very important.</p>

<p>I’m probably one of the few people she tells when she’s having a bad day or when she wishes she could be like her friends who never have to go to the doctor or worry about health insurance. I’ve also learned to keep my mouth shut when she works too hard, doesn’t sleep enough, etc. If I want to worry, I can, but it’s not fair to put that on her. </p>

<p>I’m not clear how long it has been since your child was diagnosed but I found it took me a very long time to wrap my mind around all of it. I’m a psychotherapist and had already worked with people who deal with chronic illness, but it was a hugely life-altering experience for me when she was diagnosed. It changed who I was as a parent. It was disruptive to the natural process of autonomy that is supposed to occur in the young adult years. I wondered how I had missed it (even though three doctors got it wrong for about two years). It was frightening to read the literature, it was frightening to read about the side effects of treatment. It was difficult to realize that all the love in the world and all the good intentions, which had always stood me in such good stead as a parent, could only go so far and that much of this was beyond my control. Now, five years later, I rarely think about it unless she’s having a bad day or when she’s figuring out insurance plans, etc. and wants to discuss it. </p>

<p>She’s doing well; no, she’s thriving. She does more in a day than many people do in a week. Part of that is modern medicine, part of it is that she’s fortunate that she’s not sicker than she is, which, of course, could change, part of it is her drive to do all the things that she wants to do. But again, her situation could change, every illness is different and the course of a chronic illness can change.</p>

8

<p>I reread the original post. My child lives independently. She has also never attended a support group and does not seek out people who share her condition. She has met a few people with the same illness, traded stories, I’m sure, but she has no real interest in picking friends for that reason. I think it’s because she doesn’t want to give the illness any more time or energy or claim on her than she has to. I think, in her case, that this has been a healthy choice. I’m sure she confides in her closest friends.</p>

9

<p>Silpat- feel free to share my message with your family. Now let me do a little bragging about my wife where she was and where she is now. My wife was a scholar athlete at a major university. She played two college sports. We are of the generation when Title IX came about so in HS my wife ran on the boys winter track team and beat all the boys except one. Their mothers made sure there was a girls track team by the next year. She graduates undergrad with one C (freshman year) and A’s in every other subject. She was accepted at every grad school she applied attended a major university designed the weigh lifting program for the football team and coached track. A month prior to graduation she got sick and began a roller coaster of various medical diagnosis for years. Lets say she has never really received a true -you have this diagnosis- but she has an immune system disease. Some say lupus although her doctor says mixed connective tissue disease. MCTD was a diagnosis on House once we got a kick out of that. Bottom line her description of her disease is “she feels like she has the flu everyday”. After she graduated she obtained a very good job that actually paid 3 times what I earned at my first job. We did not know each other yet. She finally had to quit working. This was tough for her. Being young and sick with no visible signs of illness cause some people to question if you are really sick. Make sure your child has your support here because this is a real issue for people with chronic illnesses.
After leaving her job she found less stressful physical work and that is where we met.
We were lucky that her disease went into remission during her pregnancy, not so lucky that it came back more severe. My wife stayed home to raise our D and has now just begin to look to go back to work. She has started a personal training business (she is 53 looks 32 5’3" 100 lbs) and is doing fairly well. She wants to go back to a career with a workplace and all the other things she has missed but I think she should stay with building her own business because of the flexibility. My w has an upbeat positive attitude although there are times it is hard. She has frustrations because there is loss and things you missed but she is happy.</p>

10

<p>Silpat, I totally respect your privacy concerns. Just know, I hope all the best for your daughter. It’s so hard on us parents to see our kids struggle.</p>

11

deleted

12

<p>I have a severe, progressive chronic disease I was diagnosed with 11 years ago. AFTER diagnosis, I have changed my career three times, loving each of those switches. My current career involves travel to international conferences and being an advocate as well as going into the community to offer free testing, counseling and resources. I created it and started a non-profit corporation because no one in our state was doing much for folks with my condition.</p>

<p>My kids are young adults and both have chronic health conditions. S was able to graduate with honors in his chosen field, EE, and has secured a job across the country. We hope that it will work out for him & plan to apartment hunt with him next month. D is now a junior in college. Both of them missed 1/4 to 1/2 of their HS due to illness frm their condition but since puberty seem to have improved somewhat and not missed much school. Their stamina is still much lower than it was before they became ill but they are able to figure out how to pace themselves and SO FAR are able to function much better than we had dared hope.</p>

<p>One of the reasons S chose his major after a lot of consulting with his dad is that it tends to lead to jobs that are “cleaner” and wouldn’t have him around a lot of messy environments that would tend to set off his multiple allergies, like a lot of other engineering specialties.</p>

<p>We are crossing our fingers that S’s employer will allow him the flexibility that works well for him, so that he can do his job but be able to rest so he doesn’t have his condition flare up. Time will tell, but so far, to our great surprise, he has found many employers willing to be flexible with him about his work hours and days, because of the great value he brings–he is extremely bright and able to solve/resolve problems quickly.</p>

<p>I too have fears–for myself and my kids, but most of the time just count my blessings that we have come this far and seem to be able to lead decent lives WITH our health conditions while we know many who have had to live MUCH more compromised lives.</p>

13

<p>Silpat, you’re right that the fear has to come out somewhere. I found people I could let it out with, in my case colleagues, and other parents whose kids had the same illness. You might be able to find some support through CC. You can PM if you want.</p>