Advice for Mom Suffering from Multiple Sclerosis (MS) with a 17 Son in Denial

Hello there,

I picked up on the MS because my mother-in-law was diagnosed in August of 2003. What I think intrigued me was the trouble you are having with your son helpig out. In January, my mother in law was also diagnosed with lung cancer and just passed away this last week. My family of five were the main caregivers for her during this process and it was difficult to keep up with the care for her, the care for our 3 kids (15,11,9), all while working a full time job.

What I noticed is the difference between all three of our kids. All of them have trouble coping with the idea of starting their chores without being asked. Even though 2 are boys and 1 is a girl, they all dealt with the stress, grief, and denial in their own way. I attribute it to the way that each one communicates. Last fall, I attended a class to learn about the basic four differant ways that each of us communicate. We are all differant, we all approach life differently, and the best way to reach us it to "talk" in our own language.
I also think that you might find a "good" example for him to follow. Maybe they could come and stay with you for a while. It should be someone that your son can talk to and respects. With good examples, I am sure that your son will see things that need to be done and do them. It is hard being a parent even without MS. We all need help to get things done. And it is our job as parents to teach our children responsibities while still letting them be kids.

Our Middle son is probably the least responsible. One night while my Dad was here briefly for dinner and my husband was caring for his Mom next door, I heard our middle child starting the dishwasher. In our family, each kid is responsible for putting their plate and silverware in the dishwasher. I didn't think much about it at the time, but was inwardly please that he had taken the initiative to start the dishwasher. As I was busy talking to my Dad, I wasn't paying full attention, but later as I walked into the kitchen I found it odd that there were so many dishes in the sink. So I sneaked a peek inside the dishwasher. It was half empty. I closed the door and thought, okay, do I yell at him for running the dishwasher when it was half empty? Or do I praise him for taking the inititive to start it when it was half full. Based on his communication style, I chose the later.

One other thing to remember, not everything needs to be done right away. Blessing your son and spending time with him talking his day, will help him feel loved and with that he will give what he can.

I watched my mother in law want things done to perfection so many times that she lost sight of what was really important. Time with loved ones. . . . .

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A.,
You have received lots of good advice. Last year both on TV and at our church I heard a pastor speaking about the differences between male and female brains. It was both hysterical and very informative. Don't get mad at your son (or husband) for not seeing what needs to be done around the house, they (with a few exceptions) literally don't see it! The Pastor gave the example of a wife putting a laundy basket full of clothes down right beside her husband and asking him to fold the clothes. In order for the husband to leave the room, he had to step over the basket. Several hrs. later, hubby is in the garage and the laundry is still not folded. Wife is fuming, husband says "what laundry?". He niether heard the request nor saw the basket. If you want the typical male to do something you have to ask at least 3 times and write a list. They hear what you say and almost imediatly forget it. I have 3 mostly wonderful sons and a husband who fit this discription to a tee. My kids have been raised with Saturday chores so they are used to not leaving the house until their jobs are done. If your son has never had this kind of structure, he really doesn't see the obvious messes and won't remember what you have asked him to do after he walks out of the room!
My suggestions:
1)Write a daily list of jobs that you need his help with.
2)Remind him several times a day, without nagging to check his list and get his jobs done.
3)Be thankful, let him know how much you need and appreciate his help.
4)Don't forget to let him be a teenager, he is stressed and needs to be able to leave his pain at home occassionaly and go do some fun things with his friends.
5)go out to a movie or an ice cream with him. You can't rollerblade any more, but there are other fun activities you can do together.
6)If possible hire a housekeeper to help out.
7)Have him come with you to a doctor's apt. or ask your Dr. to meet with him privately to discuss your illness. Most teens don't want to go to a shrink and they really don't want to talk to an adult stranger about their problems. If he gets a better grasp of what you are going through, he might be more understanding.
8)Be patient, your son is not lazy, he just doesn't see what needs to be done.
This is not a perfect system. My 15 year old is very slow about getting his chores done. When it doesn't matter, I let him take all day to do them (they could be done in less than 2 hrs). He doesn't get to watch TV or play computer until they are done. When it does matter, I give him a time deadline and a consequence for not meeting that deadline. Usually he looses computer for the day. Sometimes my husband will offer to take the kids out to lunch or buy them a slurpy if the are done before noon. Occassionally, he will bribe them with extra $. I don't know many adults who will work for nothing, why should we expect our kids to always work for nothing? The reward system always works better than the loss of privledges does.
Finally, many teens have no clue what they feel and why. When you ask him to open up and talk to you, he draws a complete blank. He can't put a name on his emotions because he doesn't even know what they are. Focus on maintaining a healthy relationship with him and ask for his help in a practicle, concrete way that doesn't involve nagging. (write lists!).
B.

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Hi A.,
My husband's DR is thinking of diagnosing him with MS, he just wants to get a second opinion before he does. So, I think I can understand your situation somewhat. My husband can not do much around the house (he has a back injury, fybromyalgia, peripheral neurophathy, MS?, etc...) and that puts a lot of pressure on me, as I'm sure both you and my husband understand. We have 2 boys that tear our house apart daily. We've already accepted fact that the house will never be as clean as we'd like, but what I've been doing lately is trying to simplify anything I can to make things easier on myself and my husband. For example, my husband feels he should be responsible for some duties around the house, such as taking out the trash and keeping the litter box cleaned. Both of these are hard on him so I bought a trash compactor off of Craigslist and a catgenie (self cleaning litter box) off of ebay, so he doesn't have to over-extend himself, or feel guilty for not being able to do his "self assigned chores ". What I hope for him to do is try and be more creative in coming up with ways he can help that are not so physical, but are creative and simplified solutions. Our boys don't think it's fair that they have to do more, because Dad can't. And they are somewhat right. I know life is not fair, but if my husband and I can come up with alternative means then my boys can have a more "normal" life. It's already hard on them that their Dad can't do what many of the things their friend's dads can do. If the work around the house is your son's mess, then just give him set consequence so you can say it was his choice to (lets say) loose your ipod because you chose not to clean blah, blah, blah...
If it's just the regular type house cleaning (dusting, vaccuming, etc...) seriously check into a housecleaner. Molly maids and such are pretty expensive, but there's usually a lot of stay at home moms who would love to earn some spending cash while their kids are at school. $15-30 an hour is pretty average and depending on the size of your house 3-5 hours is pretty average. Many people only do it every other week to save money. Think of the sanity it would give you and your family. It might be worth cutting cost somewhere else to afford a house cleaner. Ask your friends and co-workers if they know anyone, spread the word that you are looking for someone (word of mouth usually gets you someone you can trust and trace back to someone you know ;) Or maybe use Mamasource to find someone. Best of luck, I hope things become easier for you and your family...stay positive!

1 mom found this helpful

Hello, I am A.. I have raised 8 kids and all of them at 17 years are slobs including my daughter. They are not aware of what they do and that is because at this age most of them have themselves on their minds. How do I look? What will everyone think? Was that cool?

Start talking to them about how they are doing in school , What they did(not home work) with their friends . Did they do anything to help anyone at school? Praise them if they did help someone. Then tell them about what your day was like and how you helped someone. Then lead it into picking up and then praise them. Let them hear you praise them to your friends and their friends. It will help. Remember they need lots of support growing up . Their life is the new experience as they see it. Take your time. Say that would be great if you could pick up . Thank you. I really appreciate your help . You are great kid.

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A.:
I am a mom with a 13 year old son. I, too, have Multiple Sclerosis. My diagnosis came two years before my son, so I have had alot more time to think about MS even before getting pregnant. I am so glad I have him, even though at times it can be tough to deal with a teen and the MS.
My son doesn't talk much about the MS, even when I try to prompt a conversation. I have come to realize, this is the nature of a boy. Plus, being a teenager is tough enough, then pile on a parent who is sick. This is scary to them, and seems so unfair. All they want is to have a normal life like every other guy their age. They would rather pretend our MS doesn't exist, than to deal with it.
I have a good friend who grew up with a mom who had a severe case of MS from the time she was very small. Her mom was in a wheel chair and eventually needed around the clock care. I learned alot of the "kid's" point of view by listening to her stories. She basically did not have a carefree childhood, and took on huge responsibilities at a very young age. She had anger and resentment about this, but still loved her mother dearly. I believe this is just as hard on our kids, as it is for us.
About your chores around the house, maybe posting a list of specific tasks to be done each day could work. That works best for me with our 13 year old son. Then he knows exactly what is expected of him. Perhaps it could work with your son, too. And I am very fortunate to have a very supportive husband, who is great with helping around the house.
Good luck with everything --- I wish I had a magic wand for you -- try to keep a positive outlook --- and get rest when you can. When our weather gets nice, get some sunshine --- good old Vitamin D sure could not hurt the cause.
Best wishes to you, N.

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Hi A.,

First of all, let me say I'm sorry this is so long, and that you have to go through this illness. I don't know anything about MS, but I'm positive that this is probably the hardest thing your family has gone through thus far, yes? That being said, I'd like to share my story, having been with a parent with a chronic/fatal illness, and having two teens myself.

My oldest children, of course are like your son, in that they expect things, but don't seem to want to earn them. Despite having been raised not to expect everything on a silver platter, and not getting everything they see and want just because everyone else has it, plus the expectation that they live here and make messes too--they need to help clean up, they still are teens in today's world with that sense of entitlement with very little effort. They're not bad kids, they're just lazy kids most of the time. Need to be reminded what's really important in life.

They have chores that they do daily, but it's been a back and forth battle with them to get them to understand that if they're going to do something, they have to do it well. If they held a job, they just couldn't halfway their duties and expect to keep a job. This is preparation for real life, and sadly, they don't seem to "get it" most of the time. I think they're in for a a bit of a rude awakening whe they're out on their own, but sometimes, I have to pick my battles and work around them, or try and compromise, with some grounding and taking away of priveledges and pleasures when the issue is important, just so they know there are still consequences, and that they need to roll with the team. My point: is that with some teens(not sure on the exact statistics), it's just the way they are these days. Pick and choose your battles wisely, especially since you're sick and he'll be "of age" soon, and try and compromise with him.

You work, and I'm sure he's a busy kid with school, any activities he has, plus having some time to be a kid, so you both need to come to some sort of agreement on how and what duties to split up.

That being said, I'm getting that you're single? My mom was single from the time I was about two years old. When I was 14, I found out she was terminally sick with cancer, and they had given her 6 mos. to live. My oldest sisters would call and come around when they wanted something, but all of a sudden, when she got sick, they couldn't be expected to come help take care of her when hospice ran out. They still came around for money and the car all the time, though, and they were in the early/mid twenties.

My mom was raising one of my nephews, and I had a younger brother--guess who ended up "doing it all?" Uh huh, me. I missed so much school, and of course, got into trouble for that, plus here I am taking care of my 13 year old brother and 2 year old nephew, cooking, cleaning, doing laundry, PLUS caring for my terminally ill mother. I didn't ask to be put into that situation, I just ended up there. I changed ostomy bags, bandages, fed her, gave her medicines, bathed and clothed her, and anything else a nurse/capable adult family member should have to do. It was all about her and doing everything *she* should have been doing, and at 14, I was a little resentful, especially since no one ever consulted with me on how the rest of life was supposed to go. "Oh, you're just a kid" they'd say. "You don't know what's best for you." Well, I was good enough to care for her and stay all day at the hospital with her everytime she went in, and be the one watching her waste away day after day, and suffer in pain. I would have done all this anyway. I loved my mother, and our family was raised that you care for family when they're sick and in need, and I would have done anything for her anyway, but I was overwhelmed, and scared, and too young to have it all on my shoulders.

She died a year later, so we had some time to bond and connect, but it was also an exhausting, scary year, and I wouldn't wish it on my worst enemy.

My point, is please try and understand how hard this has to be for your son. Not only is he the man off the house(?), but he also is probably scared, and unsure about things, and maybe even feels a little bit trapped because he doesn't know what to think or do or whom to ask or even how. Plus, like others have mentioned, he's a boy. They internalize and don't show emotions like females do.

You both should get into some counseling, and he should probably be in some for family members of those suffering with MS, so he can get support from others in HIS situation, not just see it from your point of view. Once he firgures out how to deal with what he's going through and learns how to help you, then I'm sure he'll get better at it.

I'm sorry this is so long, but I wanted to share this with you and hopefully help you realize that I'm sure your son loves you and would do ANYTHING for you. But he needs some understanding too.

Take care of yourself as best you can, and I hope he sees his way to helping you with that very soon.

Big ((((hugs)))) to you both.

K. W

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Dear A.:
I don't have MS but I do have teenagers and I know what it's like to not be able to do the things you use to do with your kids.
From reading your letter I can see the two things that are obvious to me. You have become disabled with MS and having developed a disability has a profound effect on how you live your life as it does to everyone who developes disabiling malaise. You have all your own emotions to deal with. I think what's happening to your son is first off he's scared. His mother who has always been the "provider" and "protecter" for him is faltering, and this is terrifying for him, and I think his own fear is, perhapes, making him angry. (of corse I could be wrong.) Have you tried writing him a letter? I think this would be a less confrontive way for him to let him know how your feeling, what your fears are, and to reasure him that even though you need more help, you'll always love him and be there for him.
You also mentioned that your a member of the MS Society. Do you go to any support groups? You should if your not. The other members would know better than I what your going through.
Good luck with your son, and your MS.

A. O.

I personally would ask him to accompany me to a doctor's appointment if I were you. Maybe hearing a doctor describe the help you need will get through to him. If he's a reader then perhaps you could give him a pamphlet or book about MS so he will understand too, or have him look up a website about MS. My uncle has pretty bad MS as well, I feel for you and will think about you when we do the walk again this April!

Dear A.,
My name is A. Swift and I live out of The Dalles on a ranch. I have worked for years in the nutrition industry and have always been excited about improving the quality of life through nutrition. Six years ago i was introduced to a company that has patented balanced nutrition. I said, "we are already taking good nutrition". But I am always pretty open to try safe quality products. My husband (Rod) had dealt with degenerative disk and then had an accident and ruptured his disk. Right after that happened, while he was waiting for his MRI, he was introduced to a doctor that had been using this nutrition for years and told my husband to "flood his body with this good nutrition as it had no warning labels and would just give his body the building blocks it needs to repair itself". Rod did just what he had suggested, was able to avoid the surgery and was pain free in 2 months and has remained so for over 5 1/2 years. you are wondering how this applies to MS? Basically I had to find out more about this amazing product that had so helped my husband! I shared it with friends, family and watched the wonderful changes in their health, that caused me to fall in love with the product and have been able to help many people with many issues over the last few years. In the process i met a number of MS people that had their life back. Over the years since i have met many MS people and have talked to them and seen them improve. My heart went out to you when you talked about the quality of of life you are losing with your son. i would happy to introduce you to as many MS people over the phone that you would like to talk to and ask questions of as you like. What would it mean to you to be able to bike, rollerblade and all things your son loves to have you do with him? Call me ###-###-#### and we can help get you some information! A.

Have you considered counseling for him? It sounds like kind of a role reversal in your home (helping mom off the floor when she used to go rollerblading with me...). The two of you have a rough situation.

Giving him clear expectations will help. You might think that he "should be able to see" what needs to be done, but it probably doesn't even enter his brain. The household chores are not a priority in his young life.

If you make a list of things that he has to do every day/week -- with consequences if they're not done -- he will see it as more of a priority. Kids don't assume responsibility very often for things like this.

Good luck.

About the MS - I know a doctor in Everett, Dr. Jodi Berg, Naturopath in several different disciplines, who works with people with autoimmune diseases, including MS - who actually reversed a friend of mine's MS and she says that none of her MS patients get permanently disabled. She also helped cure my chronic fatigue syndrome. Try her for your illness.

As for your son, let him go hungry if he doesn't help, or let him take the natural consequences for his actions. I have a now 20 year old son who I have taught this way, and yea, he still forgets, but he helps a LOT!

Aexis,

M.S. can se resolved by what i am willing to share with you.
If you are interested email ____@____.com the subject line as m.s. help. We will talk! education is importan as well as moslty nutrition. km

I was diagnosed with a neurological condition (CMT) when I was a kid. Even though I HAD the symptoms I was still in denial during my teenage years, too. The more anyone wanted to talk about it, the more I pulled away and the more deeply I went into denial and I was a GIRL. Boys tend to be less likely to want to open up and talk about things as a general rule. Teenagers darn sure don't want to have to face or deal with their parents' debilitating conditions. I really don't think you should push your son into talking about this. He knows what's going on - he's just not ready to face it. Unfortunately, teenagers are self-centered little monsters - they usually have a hard time empathizing with others. As he matures, he'll develop more empathy and consideration for your situation . . . just hang in there and give him some space.

Tell him what chores he is required to complete. Don't blame it on your disease. Don't even mention your disease. Just tell him that he is young man, and men have certain responsibilities. These responsibilities are now his. (If he chooses not to fulfill those responsibilities, perhaps you can cancel something that he enjoys (cable, Internet service) and use that money to hire a cleaning service to come into your home once a week. I would give him the option.)

I am sure this is extremely difficult for your son as well. It might be worth seeing a family counselor with him (if he would). He'll be up and out soon if he's 17.

This is kind of off topic and I don't want to insult you at all, but I recently went to a Naturopathic Doctor for some issues I'm having and she put me on an Anti-Inflammatory Diet. In telling me about the diet, she said that she had one patient who came to her with a diagnosis of MS, and she put her on the diet, and when the lady came back a month later she was 99% symptom free. That may or may not be useful info for you, but I thought I would throw it out there. There's so much that is worth trying outside traditional medicine, and I've certainly seen people helped by "alternative treatments" (or more like what was used for the history of the world until about the last 100 years). Good luck!

Hi there,
I totally understand how hard it is to have a chronic condition as a mom! (I have fibromyalgia)
I don't have particular advice- but just wanted to say that I really get how hard it is when people, especially our family, don't get it!!!

I am not able to do very much with my kids and my husband often doesn't understand. But one thing I've figured out the hard way is that if I try to please all of them and end of fatiguing myself, then everything gets worse, especially my pain. My house isn't as tidy as it used to be. I have to egnore the judgements of others. My husband doesn't pick up after himself either! argh!

Hopefully someday they will mature and realize the reality through a compassionate lens.

Wishing you well~
Megan

Dear A., First let me say - I am so sorry about your MS, that is just an awful turn of events. What you need is a gaggle of girlfriends who come and help you on a planned schedule or just be supportive. Have a Saturday 2pm group to come for tea and crumpets and just talk or help you fold clothes or something. see if you can get a friend to organize it.
Second, your son will probably never "see what needs to be done" don't expect that. He will probably never tune into your MS either.....men and boys aren't made that way.

Possibly the best thing is to make some kind of a game of it, similiar to a chore sheet with check off places and lots of smiling faces. When one of my sons and I needed to communicate over a summer when he was home from college, we had a message drawer. I would leave him a note and he would leave me a note and there was no discussion. "hi, Son, welcome home! today after school please vacuum the living room and put the washing into the dryer. Thank you so much!! I love you, Mother, and I so appreciate your help what would I do without you" Maybe put a chocolate bar in the drawer sometimes and ask him to leave you a surprise some times. Hope this works. Lovingly, Mom- Barb

If it doesn't work at first get together with him on a plan and be creative.

I haven't read all the responses, but I can certainly see that a lot of people in our area are affected by MS. And I'm no different.

My husband was diagnosed with MS when he was in college but he acts like he doesn't have it. It's not that he's in denial it's just that he doesn't want his life to change. Okay, he may be in a denial a little bit.

I think it's the same for your son. He doesn't want his life to change. He's a man. But he's also a boy. Nobody at that age likes to think of their parent as being vulnerable. Your his pillar and he doesn't know how to be yours.

I don't know what sort of communication you've had with him, but being open and frank about needing him is important. Although he's 17 and it's time to grow up, this situation is something most people don't have to deal with until their parents are elderly.

I dread the day I have to discuss my husband's health with my daughter. I wish you so much luck with your health and your son.

Teenagers (and indeed, most of us) don't like to be told what to do. Better results often come when we discuss what needs to be done, then ask, "What can you see that needs to be done? What are you willing to do?" and get some agreement about that. (you can also ask, "Do you need to be reminded? How do you want to be reminded? If you don't keep your agreement, what do YOU think the consequences should be?")It's also important to be explicit about what our expectations are for that task.

"Teaching moments" don't happen in the midst of emotional upset. (like when your son is picking you up off the floor, when you are frustrated because he isn't helping, or when he is being rebellious) Any agreements that you make or conversations that you have need to take place when things are calm and the atmosphere is friendly.

If your son is in denial about what is happening with you, he may need a lot of acknowledgment and validation about his feelings. It's probably pretty scary for him to see what is happening. There is probably some grief for him as well about losing the active lifestyle and relationship that he had with you before you got MS. Acknowledging his feelings about that might be a way to open the door to further communication about what is happening and addressing what the future might hold. ("It must be really hard for you that I can't do the things I used to do. It must be pretty scary not to know what is going to happen in the future with my health")