When is helping really hurting?

[Sci Mom]

Okay, let me start off this new forum (great idea! Thanks for following through Dr. Young!) I'm the parent of a SCI daughter. She's 20 years old, and a little over two years post. Lots of complications in the last two years; lots of pain issues (that are BEGINNING to be resolved, thank goodness!) While she was having problems, I was helping her out a fair amount. But now that she's improving every day...well, I'd like to throw this question out, and hear everyone's thoughts. [You don't have to be a parent to face this problem, either]
How can you tell when "helping" is really turning into "hurting?" Do you think you can hinder someone's progress by leaping in to do things? How do you pull back without creating bad feelings, or the wrong impression? And are mothers the worst offenders?

[martha]

I can't speak from a mother's perspective, but I've wondered the same thing as a wife. Sometimes it's easier to do things for him than to struggle through watching and waiting for him to do them. When we left rehab, they listed virtually everything as "min assist" (I think they do that to make themselves look better) but I'm not seeing the "min" part. Pretty much everything seems to me to be "mod" to "max". I'm very curious about how you know when to back off and either let (or make) them try to do more for themselves. Like you, I want to do what he needs, but I want him to gain some independence as well. Where is the line and how do you find it?

martha

[Bear1019]

(I hope i dont post this twice b/c i dont know where the 1st copy went)
I found it amusing reading ur post, seeing as 20 minutes ago i was storming out of the house back to work after an argument with the mom-dearest!
I am a 22 year old C6-incomplete that has been in a chair for 7 years (since 15). I know exactly what you guys are thinking. Everyone asks me "whats TOO much help?". my reply to everyone: I will ask. Help is always appriciated, but i compare helping to one thing: if you are running somewhere, and getting tired, does someone swoop by and lift u onto their backs without asking? no. so same thing with "us" (SCI). We do what we can, and as best we can. I will admit i'm a very open and friendly person, so i have no problem asking people for help. But you need to tell the people around you (or if youre around an SCI), "hey, if you need help, i'm always there for you, but you need to ask."
I have had people come up behind me (strangers), grab the back of my chair (that has no handlebars so somtimes they hold my back) and finish pushing me up a hill WITHOUT asking or sayin a word.
To an end, let me say we all do what we can. If you dont let them try (even if it hurts you watching), they'll never speed stuff up. Heck, i can get my wheelchair into my car in 45 seconds flat. However, with practice, from 7 1/2 minutes!
Moral of my long winded story:
ASK.... no one can get mad if you ask. and if they do, dont be upset, its not ur fault!!!!!!!!!
hope thisa helped somewhat...
-Torsten

[Sci Mom]

Martha--sounds like you're in the same boat, to an extent. Reading your post was like listening to my own thoughts!
Torsten--[cool name, by the way] I know what you mean about complete strangers pushing you up hills! My daughter and I went to a concert at an open-air pavilion...very hilly. She WOULD NOT let me touch her chair, which was fine. Then this young woman out of nowhere breezes in, pushes Bri up the hill, and looks at me like, well, like Mommy Dearest! I know they want to help...but you're right, no one swoops down and carries me. I guess my bigger concern is that my daughter and I have developed some habits of things she does---things I do, and that I think maybe we should begin transferring more "things" to her column, and out of mine. But, being a mom, this is hard to initiate, and at the same time, I don't want to hinder her progress by continuing to do things that she should now be working on herself. Whew! This is longer than I thought; but if you have any input on this, I would love to hear it! Thanks, Vicky.

[Sci Mom]

What had your mom done? Was it a helping too much issue, or something else?

[Raven]

SCI Mom,

I agree, helping is done better when you let the sci'ed person know that you are there in case of need.

My parents and I used to have a lot of problems after my accident with this issue also.

I can understand that they wanted to help and protect me but it is not good for us to get everything done for us. Since we need to be independent, we also need to find out for ourselves how much we are able to do. One thing I always tried was to find out by myself if a particular thing was possible for me to do before I would ask them for help. It wasn't and isn't pride or rebelliousness on our behalf. It is something we need to do for ourselves and to become as independent as possible. It might hurt you to see the person you care for how they are struggling to do those things or taking so long to do them but it is well worth the effort.

My mom said to me before she passed away that she was very proud of how independent I had become and able to live like anyone else.

Encourage the sci'ed person to try out things first and then if unable to do so, to have you help them.

40+ years in this w/c has taught me that.

Good luck and hope things work out for you all.

Raven

[Bear1019]

[QUOTE]Originally posted by Sci Mom:

<<Torsten--[cool name, by the way]>>
thanx... but u try telling that to some drunk person at a bar with loud music... Torsten becomes Turtle, tourture, tristen, anything BUT tors-10 (ten)...

<<things I do, and that I think maybe we should begin transferring more "things" to her column, and out of mine. But, being a mom, this is hard to initiate, and at the same time, I don't want to hinder her progress by continuing to do things that she should now be working on herself.>>
everything u help her w/ is part of a puzzle that ultimately shows the picture "Independant" (wow that was cheesy ;-) )... but if something slows her down, she WILL start to compensate for that and it will become quicker and easier. My parents stopped helping me get my wheelchair into the car. YES! i was pissed-off... why? it took 7 minutes!... 1 month later i was down to 2 minutes... now, if its raining, i can get it in around 25-30 seconds. they stopped helping - i found better, quicker ways of doing it...
will she/Is she going to college? My biggest incentive for getting more independant was goin to college(i didnt want a nurse around, so my only option was to get independant... so now, in my last year of school, i hardly need help)... u can use that as getting "things" to her column...
but there is something you wont like to hear: this process WILL hurt you. you need to tell her to try things herself, and that, to a mother who cares and doesnt like to see a child struggle, hurts. My mom pushed me REALLY hard. But it wasnt easy to see her (then) 15 year old son struggling w/. stuff like eating and putting on a shirt. Well, thanx to mom (and others), i drive a tiny car, tie shoe laces, and am mistaken as a para and not a quad b/c i am 99.9% independant. But it was b/c my mom made me. Not in a mean way. But firm. And as a kid it kills me to say "I'm glad my mom was tough on me"
Just think back to times when she was small. You had to let go and let her try it herself. I bet she cried and was mad at you for not helping. Then a few tries later it was really easy. That is what you have to get used to again.
I hope that helps. If its not getting too personal (or you want to email me so not everyone can read it), what are some of the "things" you want her to do? I might have some tricks that can help her, or even help you to get her to do it. I understand if you dont want to share that much. Just keep in mind, we're all in the same boat here... We should help each other stay affloat.
-Torsten, the long winded-one ;-)

[BJ]

Looking back from the perspective of meeting my hubby 22 years ago (6 years following is accident) and watching his mom then and now as we have all gotten older and I hope wiser, is interesting.

Following the accident when mom was the primary caregiver she made all decisions - hard thing for a 19 year old who'd been on his own for a year. He started college 300 miles from home dealt with aides etc scheduled his own up time and down time. Making the change when he was home for the summer was hard for them both she wanted to be the decision maker and so did he.

Then heaven forbid I came along - I married the son that according to her was going to stay home forever, he got a job 385 miles from home - we left and started our own lives. Mom got left out, was very hard on her. Son making decisons on his own, buying a house she is still in shock.

Now that Mom is having health problems and not moving the same at 72 as she did at 44 when he got injured, when we go home she immediate snaps back into Mom mode. The first few years we fought her taking charge. Now we let her take charge and go ahead and do our own thing. Hubby politely ignores her and gets up when he tells me what time, and goes to bed when he's ready. We follow their schedule when we're there and don't stay up til all hours but 9:00 is a little early for us.

Although I still quietly chuckle at her cutting his toast into bite sized pieces, he hasn't eaten toast that way since the original hospitalization.

We just tell ourselves she want's to help and just work around her. She did alot the first few years and is still wanting to be involved but is having trouble moving past the origianl first few years

[jjs]

The best advice I got during the early days of my husbands SCI was to not do everything for him. I have firmly stuck by the rule that he will ask when he needs help. Sometimes I watch him struggle and I want to help, but I know I will be doing more harm than good. If I think there is something I am doing for him that he could try to do on his own, I will sit and talk to him about it and tell him that I will help him along the way while he is learning to do it and I will give advice on how to get started. That has worked for many things with him. He is extremely independant and I am so proud of him. It's funny because there has been times (I hate to admit this and I would not tell him this) when I had my doubts about him being able to do something on his own. When he accomplished that task, I was amazed and it made me realize that when you really want something and you put your mind to it, you will achieve your goal.

[martha]

jjs, thanks for that word of encouragement. I've been seriously wondering about what my husband will and won't be able to do eventually. I've been afraid for him and for me frankly and it's encouraging to hear that given a strong will,they can learn to do more for themselves. Please don't misinterpret -- it's not that I mind doing things for him, it's just that I know we'll both be happier as he gains more independence. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

martha

[Sci Mom]

Wow--I've gained quite a bit from reading everyone's posts. Tag---YIKES! I think I'll print yours out and hang it on my fridge or something! My "Things to not do list" http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

Torsten--[yeah, I can see where loud bars would be a problem!] you are very wise for one so young. I think we're at the point where, on some tasks, we have to break a habit. Other tasks are impossible until the home remodeling is done. So..I do her laundry because the washer and dryer are in the basement [but she can fold and put away]. So some tasks are directly related to accessibility issues, but are going to be addressed in the coming months. I guess I'm looking ahead, and planning these moves so it doesn't seem so jarring to her. Not that she doesn't want to be independent [yes, she's attending a community college right now, but her goal is to go away to school and live in the dorms] but she's had so many physical set-backs that, after two years, it's like we're just starting! Gosh, I make it sound like she's completely dependent; she transfers independently, caths on her own [except I still wake her up in the morning because she's afraid she'll oversleep...this is the first chore to move into her "column"], etc. Household chores are coming next; she still doesn't drive, having been in four car accidents in four years, she's still a bit gun shy. You get the picture. I just need to sit with her, go over her daily routines, and outline exactly what she can and cannot do...and DO IT. I appreciate your comparison to when she was little; but this is much harder...Anyway, thanks for all the feedback! Torsten..how do you get your chair in the car? I could use tips on that!

[Bear1019]

<<you are very wise for one so young.>>
oh, if only my mother could hear you now? She would have a good laugh ;-) ;-) ;-)

<<Not that she doesn't want to be independent [yes, she's attending a community college right now, but her goal is to go away to school and live in the dorms] but she's had so many physical set-backs that, after two years, it's like we're just starting!>>
i'll be honest that i did NOT want to learn how to cath myself and transfer myself and other things for the main fact that that meant *I* had to be resposnsible. And with such a new and different scenerio, it scared me.

<<[except I still wake her up in the morning because she's afraid she'll oversleep...this is the first chore to move into her "column"]>>
lol... i know EXACTLY what she is thinking... but do what i do: i have the LOUDEST alarm clock AND a stereo, set 3 minutes appart. so when i hit the alarm, i go back to sleep, then before i'm really asleep, hear the stereo....

<<I appreciate your comparison to when she was little; but this is much harder...>>
I know... I didnt want to make it so simplistic... Just didnt know what else i could compare it to

<<how do you get your chair in the car? I could use tips on that!>>
I drive a two door VW GTI (now called GOLF) for the main reason: big door that opens very wide... I hope in, pop off the right wheel, put it in the back seat, turn the chair, take off left wheel, put in back seat, lift up chair over my body and put it on the passanger seat...
a factor that helps: having a drivers seat that automatically reclines and goes forward and backward (makes distance from body to stearing wheel bigger so chair can fit)...
If you have any questions or need brouchures (i drive a german hand control which i like a LOT better), feel free to email me: TGross@tgandco.com
-Torsten

[martha]

Torsten, I'm amazed that you seem able to do so much on your own. If I'm not being too nosey, how long after your injury were you able to take your chair apart and get it in the car by yourself.
thanks,

martha

[Bear1019]

<<If I'm not being too nosey>>
no worries about being nosey. I used to speak professionally at companies, colleges and high schools about this, so i'm VERY open and very used to sharing. If people didnt share with me, i wouldnt be anywhere close to where i am now...

<<how long after your injury were you able to take your chair apart and get it in the car by yourself.>>
well, technically 3 years. But i lived in germany the 3 years after my injury, and the driving age is 18, so i didnt get the chance. But i doubt i would have been physicaly ready anyhow (i'm a quad, so it took a while to get to my "para-like" condition). The norm that I see is 1-2 years for para's. Most Quads use a ramp/mini-van, so i'm not too sure how long it takes Quads. Its hard to say for quads b/c our hand function is all different.
-Torsten

[martha]

This is all still so new, and of course everyone progresses at a different rate. But, like most things in life, we keep looking for a "yardstick" to measure these things. I know that's not reasonable, but it is human nature. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif And, reading of successes such as yours is a definte encouragement to all of us. Thanks!

martha

[Sci Mom]

Well, I did it. I told my daughter that this weekend [when I'm finally done with "hell week" at work http://sci.rutgers.edu/forum/images/smilies/frown.gif ] we're going to sit down and list her morning routine, her evening routine, and what she does during the day, and begin moving everything into the "It's YOUR responsibility" column! She was completely cool with this! We are also going to list "Things that need to wait until the house is finished", because that does make a difference with some things, but I feel like we took one giant step. Thanks to everyone posting here---especially Torsten! I'm so glad you posted here, to give us the perspective from your side. [Yeah...I laugh when people tell me how mature my daughter is too ;D ]
I'll keep everyone posted on our progress...Vicky

[jjs]

sci mom, its great to hear that your daughter took it so well. I'm not surprised though. I really believe that those who are SCI really want to be independent. I think maybe they are unsure about how to do it or maybe have doubts about being able to do it. Once given the chance, they will make it all happen.

Martha, I completely understand your situation. Only being 5 months post. When we were only 5 months post, I wasn't sure how far Jeff would go or how much he would be able to do. I also didn't mind doing things for Jeff, but I knew that there was a time when he needed me to be loving, like a wife, and there is a time to be tough on him, like a therapist. He has amazed me and his doctors on how well he has come along for being a C5. He does chores around the house like sweep and mop the floors, fold laundry, dust everything at his level, load and unload dishwasher, clean the bathroom, put clothes away, etc., etc., etc. He also can mow the lawn (with help to get on), pull weeds in the garden, independent with all transfers, and drives. Everyday, things get better and better and he learns more and more things. He has also stained and painted wood projects like desks, clocks and benches. He continues to strive to learn new things. Although we are only 2 years post, I feel we have come a long way from the complete independence we started with.

[Scorpion]

Family is all about give & take, and once we're teenagers, the balance begins to shift. I was injured at age 20, still living at home and going to college and working. I had been ready to move out for a while, just didn't have the money. It's not that I didn't get along with my folks, I was just ready for independence.

To go from that to being dependent like an infant was devestating. My Mom was better equipped to deal with it as I'm sure most moms are due to msternal instincts. But there was a lot of stress on everyone.

My parents excercised tough love, and it was great for me in the long run. They probably could have been tougher. http://sci.rutgers.edu/forum/images/smilies/smile.gif If you can get short vacations away from your son or daughter with SCI, it'll do wonders. My aunt is a long-time nurse, so helping me with bowel care & stuff wasn't a big deal for her, and while it was a big deal for my pride, I had to swallow it, because I knew my folks needed--and deserved--the time away. Realizing this made me fight for independence even more, and I was taking care of myself after about 2 years. About 4 1/2 years post-SCI, I moved out on my own and have been on my own since (over 6 years now). It's been tough, and I've got debt up to my eyeballs, but I'm doing it and swear I won't ask my folks for help unless absolutely necessary. I'll call my brothers up for cash first, if I need to. http://sci.rutgers.edu/forum/images/smilies/smile.gif

Anyway, I live 11 hours away from Dad & Mom, and my closest relatives are 10 hours away. I moved so far away in a concious effort to get out of my comvfort zone and prove even moreso that I could be independent.

It gives everyone in the family great satisfaction when the one with SCI does as much as possible for as long as possible, whether that's using a mouthstick to design on a computer like my friend, or living independently.

SCI-Mom, you obviously have a good relationship with your daughter. The more you express your emotions before they well up inside tyou to the point you explode, the better it is all around.

To answer your original question, yes, helping can be harmful. Just like spoiling a child who has no disability, you can spoil a child with SCI (even if that child is grown). But it sounds like you're on the right track. Good luck to you & your daughter!

~Rus

[marmalady]

I think everyone's thoughts/ideas/suggestions are great! Helping your family member achieve as much independence as possible is the best thing any of us could do - even tho it's painful for us to watch the struggles.

One comment I have, is defining what an SCI person is capable of doing, by the level of their injury. Everyone's injury ( complete/incomplete, crush injury/subluxation or torsion, etc.) is so individual, and functional recovery is so individual, that I don't think we can compare one C5 to another C5, and say, 'well THAT C5 is doing this, so why can't I (or my family member). Everyone recovers function at their own rate; what some people at a certain injury level may be able to do, might be impossible for another to consider.

Being supportive of what our family members are able to do, and 'noodging'(sp?!) them to always try more, and recognizing their individuality, is what I feel is important.

Jackie http://sci.rutgers.edu/forum/images/smilies/wink.gif

[musik0102]

I am so thankful I picked up that Time magazine that day and read about Dr Young and found this website!! My boyfriend is a T4 incomplete T5 complete, 18 yrs post accident. He is very independant and has found ways over the years to "make" things work for him. He knows I would do anything for him but I don't help out unless he asks.. And I know how you feel, there have been times he is struggling up a ramp or hill and someone comes along and helps and looks at me like I am so cruel! When we met he made sure I understood that he was quite capable of handling things on his own and if needed he would ask me for help.He left Europe 8 yrs post accident to make a life for himself here and because of his stubborness and hard headedness he has accomplished more than most "able bodied" men I know. I think knowing that someone who Loves you is there for you and is willing to take a step back to give you your independence is the best thing you can do. I'm sure you will be amazed at what can be accomplished....

[Scorpion]

Excellent point, Jackie.

~Rus

[BJ]

I just re-read all of this again, thought of one important thing. We all need to encourage as much independance and self responsibility as possible. But the person with the disability has an important decision to make as well - the more independence that gain the more physical energy it takes. So for example a c5/6 quad off to college who has been using a manual chair - yes they are capable of self propultion but is using the physical energy for that better used to study? That is a decision they will need to make for them selves.

Hubby brought this up in a discussion with a new quad the other day. He was at that point when he started college. Yes he could dress himself but it too 2 hours, yes he could use a manual chair but it took 1 hr to go the 4 blocks from the dorm to campus. His question to himself was Do I want to use my time and energy this way? His answer was no - got the powerchair and an aid to help with dressing, routine and showers. Gave him about 5 more hours in the day to study and enjoy the college experience.

So for the people we care about if they make a decision based on energy and where they want to spend it - it needs to be their decision and we need to respect it.

Now from my side - after him making that decision 27 years ago - I see some benefit, in talking to some of the folks we went to college with - they stayed with the manual chairs and minimal attendant care they have blown out their shoulder and have significant pain from over use of joint, my hubby has no pain, still uses a manual when we fly and has lots of energy and time to enjoy life

[Sci Mom]

Thank you Tag! You make an excellent point in your post. I've been trying to explain this same philosophy to our insurance agent :0

[Rbyrd2531]

It is so easy to get into a habit of helping too much. When you have watched someone you love go through a devastating injury that tendancy can be even stronger.

Steve was in the hospital for 6 months, then in rehab hospital for 5 months. When he was in icu , we almost lost him several times. For the longest time, I did everything for him. Getting him a glass of tea, shaving, drying his hair etc:) I never saw anything wrong with it. He became very dependant but also his self esteem was very low.

One day I came home and found that he had found a picture of my dog, (a beautiful Husky:) and had custom framed and matted it with some of his old art supplies. He was so proud of it and it looked so perfect. Also, an emotional reaction stirred in me that I had not expected. I almost lost my composure. I had never thought that he would recover to the point to where he would be able to do things for ME again!

Since that time, I encourage him to do everything he can and ask for help only when he definitely needs it. He is happier and more at ease with life. I still help too much with personal care. My feeling is that If I can help with dressing getting ready for the day I have saved us some time .As long as he KNOWS how to do these things in case i ever get hit by a truck or something.

It probably depends on the person and their relationship with a caregiver .

Russ Byrd

[martha]

Russ, that's so wonderful for both you and Steve! Congratulations on all of his "victories". I know you've told me before, but what level is his injury?
all the best,

martha

[Rbyrd2531]

Hi martha, nice to see your name again:)
Steve's injury is at T-3...
You take care!

Russ Byrd

[Sci Mom]

I'm just a Copy Kate, I know....

but I remembered this old thread when recent discussions came up. Maybe some of this information can help shed light on this age-old problem! http://sci.rutgers.edu/forum/images/smilies/smile.gif

Vicky

[marmalady]

LOL - a 'copy-Kate'!!! http://sci.rutgers.edu/forum/images/smilies/smile.gif

Thanks for bringing this up, too, Vicki - We have so many new members I can barely keep track of everyone now, and it's good to bring up some of our 'old' http://sci.rutgers.edu/forum/images/smilies/eek.gif discussions to share with them.

Anyone who was around for the 'oldies' seen how far we've all come since then? We should be proud - of us and our family members!

_____________
Tough times don't last - tough people do.

[Stacey]

I went back and read all those posts. I'm struggling with those issues now. My husband and I have gotten into a routine, and now that he can do more for himself, I' not sure how to change that routine. When I suggest that he do things for himself( very nicely, btw), he'll get angry and deny that he can do them. Or he'll say that he's just waiting to get a little more hand strength back then he'll do it. He has been consistently getting recovery, so I think he's just waiting around to see exactly what is going to happen. He tells me (and his therapists) all the time "why should I learn how to adapt when I may be able to do it the old way in a couple of months". It makes me insane to hear it, but I don't know what to do about it. Can you make a grown man do something he doesn't want to? I never could before his injury. I have found that if I suggest something then he refuses, but there have been days when he'll want to try something on his own and I'll just "stand by" in case I'm needed.
So, now that a couple of years have passed since the original posts, any words of wisdom? Anyone else out there with a spouse like mine?
Stacey

[marmalady]

Stacey - Words of wisdom 'you can lead a horse to water----------------'! Great to hear he's getting recovery, but he may be 'blue-skying' a bit, and not dealing with what's here now. And now is where he is - well, now! I'd maybe suggest - softly, sweetly! - that he can learn 'adaptive' ways to do things now, to make his life easier, and when he gets recovery back, he can go back to the old way. Did that make sense?!!

We used to do sneaky things to Matt like not put his glass right in front of him, so he had to reach for it; stupid little mind-game things, but they worked, and he soon started trying to do more.

Hang in there, lady, you are doing great; don't ever forget you're still in the first stages of dealing with all this; people always think they'll 'bounce back', but this isn't a broken leg that's going to heal in a few months. The knots in your stomach may not go away, but they'll get to the point where you can function with them.

_____________
Tough times don't last - tough people do.

[Stacey]

Thanks for the advice. He's hard to get through to sometimes, very hard-headed. I just try to put the "idea" in his head and hope that he picks up on it and makes it his own. I know what you mean by mind games, I'm getting to be a pro at them.

He talks about the future all the time. A future in which he can walk and be independent. I hope that time comes for him, but I wish that he could live in the here and now. I guess it is just too painful for him, and I would never dare take away his hope. I just try to be there for him when he needs to let go and get those feelings out of his system, and let him know how much he means to me and the kids.

Stacey

[carl]

I need to point out one common thread in this discussion which should make many of us pretty happy. A great deal of what is being discussed is common no matter what the injury level and is also common to parents with able bodied adolescents. IMHO, an adolescent is somewhere between the dependency of childhood and the independence of being an adult. Do you help or do you push - you've got to find the answer in your heart, your brain, as well as by really listening to your child. The injury makes this much harder for both the "child" and the parent, but many of the the issues are the same as with AB's. Each one of us is different and each adolescent is also different and the answer is frequently somewhere in the middle. There is also pretty good professional help available. Everytime that I have a conflict of these sorts with my son I say thank goodness that is the biggest problem. Oh, and thank goodness that my son does not read this forum... hopefully.
Carl