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What it's like for your children when their parent has chronic pain

I've been thinking about writing this for awhile, but usually do most of my posting on my phone while lying down, & this will be long. Another post talking about drinking while taking meds, & being very depressed spurred me to share my experience.

I grew up with a Mom who had chronic pain, she had pretty much every disc issue listed. I also recognize the names of many of the meds she took including soma, neuranton, (sp), flexiril & methadone. And oh yeah, lots of valium.

She also suffered from depression, and IMHO, had a small degree of biopolorism that was never diagnosed. For a time, she was also a pretty heavy drinker too. Not a good mix with all the meds.

I really had no understanding back then of what it was like to live with chronic pain, and here I am now, in the same boat as my mom. My mom truly was a "drama queen" so it was hard to know if the pain was really that bad, or she was exaggerating for attention,(she was a very needy person) & which was what most of us thought was going on. She lost her home, her (idiot) boyfriend, was on permanent disability, and had strained relationships with much of her family, especially her 3 kids.

This stuff started when I was maybe 11 or 12, and as the oldest, much of the caretaking of my 2 younger brothers & her, fell to me. She was a single mom with no spouse for "back-up" & was incapacitated much of the time. We had money for groceries, but many times there wasn't food in the house because she was either in too much pain or too depressed to go to the store. I don't know how many times we ate cereal for dinner!

The hardest part was her "woe is me" attitude. She was always down in the dumps, unless she had a new man in her life, but that's a whole nother story for another forum. She also blamed the world for her problems, & felt everyone "owed" her something. She complained CONSTANTLY about her issues, & my brothers & I would cringe if we were in a store & the clerk said "how are you today", because she would stand there & tell them everything that was wrong in her life! Quite honestly, & sadly, when we were out of the house, we did everything possible to avoid seeing or talking to her, because we were so tired of hearing about all her problems.

She made me her "therapist" (even though she had one) at the age of 5, and would have long conversations with me about all kinds of adult problems, including her health issues which were often way over my head. She also threatened to kill herself many times, & when I was in high school, I would tip toe in her room after school with a knot in her stomach, wondering if she finally made good on her threats, or it happened accidentally because of the mix of pills & alcohol.

As I got older, what became so literally maddening, is that for every complaint about her pain & how it was affecting her life, myself & other family members would offer suggestions to deal with it, & it seemed she would never take them. For example, with a lot of our meds, we have to eat with them right? My mom had a serious weight problem, & I remember once when she was blaming all the weight on the meds telling her that if she needed to eat with her meds, she should eat yogurt or a handful of crackers, not ice cream or brownies! Now I understand that it was more the depression about the chronic pain she was in, & her inability to cook healthy meals that caused her not to eat healthy.

I found out later that she resisted some of the Dr's recommendations like surgery (I don't blame her, I'm right there with her on that one, & I think it would have been disastrous for her). She also would not try the steroid epidurals, or any of the other stuff like that, which was her choice, but might have made a huge difference in her quality of life. She did have some interaction with a PM, but from what I could find among her papers, all he did was prescribe her methodone.

Speaking of meds, some of them made her so drugged out, it was hard to have a conversation, & her memory was a mess. After taking neuarontin for awhile, I now get that, & refuse to take it anymore.

And of course, with a chronic pain parent, do I even need to mention how many events she/we missed or were extremely late too?

Pain was so much a part of her life, that when I said her Eulogy & wrote her obituary, I included the fact that now she is pain free, and will able to dance to her heart's content (something she loved to do). She passed away on my daughter's 4th birthday almost 9 years ago of heart failure.

My mom really did live a sad existence due to chronic pain for a long time, & I am sorrier than I can say that I wasn't more understanding. It makes me cry every time I think about it, but as I think we all have experienced, people who don't live with chronic pain don't understand it.

For those of you who may be wondering how I could talk about my mom like this, let me tell you she'd want her story told if it helped someone else, so please don't think I'm disrespecting her memory, because she would not think that.

So here I am, floating in the same boat that my mom did, with 2 children of my own (10 & 12), trying desperately not to make the same mistakes my mom did with us, so my kids don't end up not wanting anything to do with me.

God knows, I'm not an expert, but here's a couple of things/ways I treat my situation with my kids, based on what I learned. I'd sure love to hear your thoughts & what you do, because I could use all the help I can get.

1. I'm blessed beyond words that I have an amazing spouse who picks up a lot of slack. If I was single, I'd make sure I had friends/family to help with whatever needed to be done, so that they weren't forced to grow up too fast. I HATE asking for help, I have a lot of pride, but for my kids I would do it if I have too.

2. No matter how bad it gets, I never, ever, talk about suicide in front of my kids. I think we've all had a thought or two about that (I'm sure 99% of us would never do it, but sometimes it gets so bad the thought of it flashes through our minds).

3. My door is always open. Meaning, I spend a lot of time laying down in bed, but my kids know they can always come in my room and lay down with me & talk about whatever is on their mind, or watch TV (we watch way more than they should, but at least we are spending time together), or I try to help them with their homework when I can. Of course, the big joke in our house is that Mom has a Master's Degree & can't do 4th grade math!

4. I am teaching my daughter to cook; not necessarily because of my pain, but at almost 13 it's a skill she should start learning anyway (as I'm typing this, she just burned some kielbasa, oh well, that's how you learn) . Hopefully as she gets better at it, she will be able to make full dinners. She enjoys it very much, & does not consider it a "chore" (yet, anyway).

5. No matter how bad the pain gets, I make sure to go grocery shopping. I've had to really change my "style" regarding that; first of all, I'm one who does not believe in taking pain meds & driving, so guaranteed I'm going to be 'dying' when I get home. Please, no debate about that, there are plenty of other debates about this issue all over the board. I also make sure that someone goes with me, so they can bend down to pick up the low stuff, unload the cart, & put the bags in the car. Also, when we get home, they have to carry the bags inside & put at least the perishables away, because by the time we get home, my back is toast.

I could have my husband do all the shopping, but, well, you know how that can go :) He doesn't cook at all, except maybe eggs, so I really hate to send him to the store by himself. Plus, I'm not willing to let go of the control of that. I try to go shopping with him more than the kids, so all the burden doesn't always fall on them, but sometimes that's the way life goes. Since hubby doesn't cook & I often can't, they eat way more frozen stuff than they should, but at least there is always food in the house.

6. As far as what they know about my condition, they can't really understand the in's & out's, but I did show them a picture of a spine & explain that some bones are on top of each other because the stuff in between is gone, etc.

7. They have obviously seen me in pain, but I do my best not to complain about it in front of them. I'm nowhere near as successful as I'd like to be, but I do try.

8. They do know that my condition will never go away, but that I am trying get to feeling better so I can do more activities & things with them. Sadly, I have missed out on way too much this past year.

9. I also try not to be depressed around them. I went through a whole menopausal depression that was hard on the whole family, & they have dealt with more than their share of that.

10. If I am talking about my health to friends or family, I try not to do it within earshot of the kids. My daughter has already expressed that she finds it embarrassing if I do, & I remember that all too well...

Well, this is a really long post, & my back is really hurting from sitting at the computer so long. I really shared my story with everyone in case you are doing/handling some things similar to my mom, so you know how it might affect your kids. Believe me, I'm not judging, because there is certainly no handbook on how to make sure your chronic pain does not traumatize your kids, we are all doing the best we can. But maybe, someone out there might see themselves in some of the behavior and the affects it can have, & want to make some changes.

Best to you all. Susan
We can't always control the cards we are dealt in life, but we can control how we play the hand


  • One of my biggest fears as a parent in chronic pain is that my children will never understand the pain that I have been in and will eventually in time grow angry with me for not being able to do the things with them that a normal mom would do. My children are still young, only 7 and 2 (as I am only 25) and they are already starting to grow weary of "mommys bad back" and why cant mommy pick us up and hold us and they get angry that I cant go to the park and play with them or get down on the floor and play with them. I hate to think that they will grow up and be angry with me for not being a good mom to them. I try my best, I always cook for them, I always put them to bed and they sit with me or lay with me when im having a particuarly bad day. I just hope and pray that my kids dont grow up and have bad feelings towards me because of my pain issues :(
    (12.24.13) L2-L3 Laminectomy, Discectomy and Coflex insertion. DX'ed with Ankylosing Spondylitis on 5/13/14
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 03/12/2014 - 11:35 AM
    I share your fears. My kids are 7 & 4 and already 'different' because of their accents. I don't want them to be the English kids with the weird Mum! I try to remind myself that all parents say no! If I were perfectly healthy I wouldn't be constantly running to the park or rolling on the floor whenever the whim came over them but we all know it's more than that. There's the missed school functions, the 'wait until Daddy gets home' because I can't do that, etc. I too hide my pain & depression from my kids. I concentrate on activities that we can do together. I have briefly explained my condition to my kids. They need to understand why Mummy can't do all the things that other Mum's do. We have a lot of 'Movie Nights' so I can lay on the sofa (with my TENs & heat) together. We have an extra deep sofa so we can all snuggle. ;-)

    I'm very lucky. I've been with my husband for nearly 25 years (for anyone doing the math, my parents were equally horrified when I announced that we were moving in together after 48 hours!) and he's incredibly supportive. Being so far away from my family & friends often makes life very hard for us. I wish I had a support system but the acquaintances you make later in life are far more likely to drift away when the going gets tough. Mostly my little families doing ok so far. I have my dear husband to thank for that. Without him to 'take up the slack' I truly fear they could be living MSG's childhood. I had him read the original post & he assured me that I am not & will never be like your mother but chronic pain warps & changes us fast if we don't keep ourselves in check. I too wonder what she would have been without the crippling pain.

    I've posted here about my Dad's saxophone playing & his golf. An honest eulogy will have to mention his sense of humor, his intelligence & drive. His strength & devotion as a husband & father. His spine & pain simply wouldn't come into it (other than just another hurdle, & there have been many, that he has overcome in his life) he's very proud & doesnt often mention it. He has his faults like all of us but I think who you are deep down inside is magnified by chronic pain. He's made of stronger stuff than me! I still struggle daily to be positive & happy for my family.

    As the poet Philip Larkin said,

    They f**k you up, your mum and dad.   
        They may not mean to, but they do.   
    They fill you with the faults they had
        And add some extra, just for you.

    But they were f**cked up in their turn
        By fools in old-style hats and coats,   
    Who half the time were soppy-stern
        And half at one another’s throats.

    Man hands on misery to man.
        It deepens like a coastal shelf.
    Get out as early as you can,
        And don’t have any kids yourself.

    All we can do is our best & start again the next day & the day after that and try not to f**k them up too much! ;-)
    Osteoarthritis & DDD.
  • philnoirphilnoir Posts: 52
    edited 03/16/2014 - 10:39 AM
    Many times I’ve heard adults reflect on their childhood with the observation: “we didn’t know that we were poor.” Not by accident are children fascinated by the genuinely wonderful in life, leaving the droll details for adults to worry about.

    My three sons, now grown men with careers and families of their own, have reported that they were mostly unaware of my disabilities during their childhood. Only in their adult years have they had to come to terms with a chronically ill father who has difficulty performing activities a normal 60-something takes for granted.

    It’s not that I hid my condition from them as children – I was too busy to worry about appearances. I began to work out of a home office when they were quite small, indeed, before our youngest was born. They got to experience having a father around most of the time, but they also learned that even though dad was home, he was not always available. I could have been working behind that closed door, or I could have been lying down to deal with a pain flare – an activity that I’ve performed daily for the past 25 years.

    But being physically present -- the outward sign of caring -- is only half the job. Being emotionally available to your children is the complimentary inward manifestation of giving to your children, and is perhaps the most important aspect of the first 12 years of fathering.

    I tried to be present for those important moments – the recital, sporting event, science fair, or other big event in a child’s career – but like all parents, could not make them all. Of course, as a chronic painer, I felt very guilty for missing them, and negative toward my illness, blaming chronic pain for my poor performance of parental duties. And predictably, all of my sons as teenagers confronted me for missing a particular event that was important to them. Teenagers read a great deal into the simplest slight, and are especially good at the kind of emotional manipulation that twangs their parent’s heart strings into playing songs of guilt. (I’ve even been accused of missing events that I remember attending.) However, I’ve learned that as they mature into adults, they’ve forgotten all about these absences. Emotional healthy people develop the knack of remembering a majority of the positive experiences and tend to forget the negative.

    Like the majority of chronic pain patients maintained on opiate-based analgesics, I’ve had problems around medication resulting from both over and under treatment of pain. Methadone for me presented a “two edged sword” of benefits vs. side-effects – it was the most effective pain medication I’ve ever used and could bring pain down to level 1, but methadone was also the most debilitating of all the opiate-based analgesics. Although I slept for what seemed like 12 hours a day during the years I was maintained on methadone, I was always tired and no doubt, not the most effective parent on the block.

    My sons, as children and teens, were oblivious to my medication issues. They were pleasantly unaware that I was on medication, and frankly, as children, couldn’t care less, even under the influence of police propaganda programs like DARE. Only now, as an adult with responsibilities of his own, is my oldest son concerned about my medication – he won’t let me drive his children knowing that I am on opiates. I’ve shown him the data that demonstrates a definitive lack of impairment in drivers who are also chronic painers on medication, but I don’t believe fact has much to do with my son’s decision.

    I feel this irrational attitude against opiates by both my son and his wife’s is part of the prejudice against “drugs” shared by many in the American collective unconscious, which is reinforced almost daily in the media, but our politicians, and by specific interest groups. I’m sorry they feel this way, but I do understand. (What he doesn’t realize is that my need for pain medication is much less now than it was 20 years ago when he was strapped into the child car-seat. That’s when I was a real menace behind the wheel :#).

    Many of my former fears about how my illness has had a negative effect on my children’s emotional well-being have not proven out. However, some of my pain and struggle has resulted in an unexpected positive outcome in their lives. For instance, unlike me, their first instinct does not move them to seek a chemical solution for discomfort. All three sons are reluctant to self-medicate a headache with aspirin. This is progress!

    These boys, who have grown into men in the flash of a lifetime, impress me with their resourcefulness, skills, and talents, as well as their successes and failures in life. My sons seem to have thrived in spite of my best blunders in parenting, an outcome that continues to surprise, delight, and amaze me, giving me an opportunity to be forever grateful.
  • terror8396tterror8396 Posts: 1,832
    edited 03/16/2014 - 10:43 AM
    kids are very intuitive and accepting. i have not witheld any information from my son for the 13 years of chronic pain and numerous back surgeries. he has come to the hospital and visited, has helped me get dressed and knows all. trust your kids and the worse thing is to withhold things from them. be honest and forthright with them is my advice. iit is no big deal to let them know even meds.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dilaurodilauro ConnecticutPosts: 9,859
    I had my first spinal surgery when I was 28 , my son was 4 and my daughter was about to be born. When they were young, I made every effort to be with them, to share in their fun, their fears and just growing up. I started to coach youth sports because I could no longer play sports myself at the level I felt I should be doing.

    My kids, now 35 and 39 and have always been there supporting me, even at a young age. They 'knew' that there were things their dad couldn't do. They just picked it up. Still to this day, they help out with chores they realize I can not do.

    We have talked about this a lot. They always told me that there were always happy that I was involved with them. Even if it meant me limping, grimacing in pain, slowed to a snails pace, I was there. But most of all, they have always told me that it was much more important for them to know I loved them more than anything that made them always happy.

    Children understand. You dont always have to state it, they know it. I know I may be making this seem more simple, but it is simple. Those that shy away from their children because of the pain, not going to their events, missing out on special occasions, will be the ones that lose out, because those are the memories the children will never forget.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • terror8396tterror8396 Posts: 1,832
    edited 03/16/2014 - 5:42 PM
    it is hard for my son because of the fact that i have problems with mobility and going to boy scout meetings is not as frequent as it was in the past. he gets sad because of this but very important meetings like him working for his eagle scout , i will always be there. same with school events. but he understands that sometimes i have problems going. he gets sad some times but ;he understands and is accepting. he was 3-4 when back issues started, now he is almost 18. he has lived with it good and bad. he looks at it as a non issue.i also used to coach his little league but as back got worse so did my time with his sports etc. but he was accepting and now considers it a non issue with him
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • My kids know that I will always attend all there extra curricular activities, even if I'm pain. To myself, I think of them as a "suck it up day", because I know ahead of time that I am going to be on major pain when it's over. Yesterday was definetley one of those days! My daughter does competitive dance, & had a competition yesterday. For me it involved all the things I can't do like I used you; walking several blocks, up & down the stairs several times, bending down to get several pairs out of her shoe bag that is on the floor, sitting in uncomfortable chairs for extended periods of time. By the time we hot home I could barely move. But it's ok, the pain will eventually subside a little, & I know how important it is to her to have me there (even if she is turning into a surely teenager! :). So if I have to "suck it up" for my children. Besides, seeing her & her duet partner get invited to New York for a dance week is a huge honor, & seeing the look on here face made it all worth it!
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • Im from the child perspective to this article and i was wondering if you had any coping methods.
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