How do i motivate my son

[gzarnke]

guess i haven't been on here for awhile, i just feel like all i do is talk about our problems.  I just do not know what to do for my son.  His injury is now 1 year and 5 months and he does not want to leave the house or go to rehab or to any doctors. He is a T9 & T10 he still has so many problems with his bladder but he will not try to do anything about it.

We did go to his Dr. a few weeks ago and they told him that if he does not take his ditropan he will be dead in 5 years!!!   I think that the whole problem is he is still self cathing and not using any lubricant. He just has given up.  He was very down a few weeks ago so i have been staying close to him every day sitting with him as he plays his computer games and watches movies. 

He does have so much that could be going on but this Dr. so mishandeled him a year ago that he has lost all respect for the medical comunity. I know i have to get him going he is 22 years old and stuborn as they come.

I have heard from some people that they know others who do everything they want to now but they did not leave the house for 2 years and others for 4 years.  With this information i just do not know if i should give my son all the time he wants or if i should keep pushing for him to move forward with his life.

He gets mad as soon as i even say anything about going outside on the deck!  If i try to discuss this issue with him it turns into a big fight and he gets very upset and yells and falls apart.

I just do not know what to do.

Gzarnke

[Catucci]

Hiya Gzarnke

So sorry to hear it's not going so well.  It's such a difficult subject as we're all so different and problems very complex.  Is there any way you could get a counsellor in to see him?  As physical problems are all to obvious to the naked eye, when our emotions and thoughts are injured it's not obvious to everyone but VERY obvious to you and others close to him.  I think coming to terms (if ever) with such a huge change will take years and years of therapy, whether it be professional or therapy from family.  My hubby Nico suffers bouts of depression, one of his main worries is the added pressure his sci has put on me.  However much I try to assure him, he still is wracked with guilt.  I wonder if your son is feeling a bit like this?

I know you've mentioned the bladder situation being a real concern.  Couldn't he use indwelling caths for 6 months or even a year or more to ease that particular burden.  I know using indwelling caths isn't ideal for long term use but if it's going to improve his self esteem and encourage him to get out surely it'd be worth it?  Nico's used indwelling caths for more than a year now and his specialist is quite happy.

Sorry I can't be much help but I really think the therapy route would be worth a go but I do appreciate it's going to be hell on earth for you to get him to accept it.

Best of luck and keep us posted.

LOL xx Cat xx

[gzarnke]

Hey cat,

I have missed talking to all of you.  If i could get my son to see the urologist an indwelling cath just might be the very thing that would help him fell better.  I have to be very carefull about how i approch the subject and i will see if my husband has better luck trying.  We have both tryed to talk to him. 

I am wondering if the fact that his last visit with that Doctor a few weeks ago did not help to put him in such a depressed mood, she told him he would be dead in 5 years if he did not start doing somthing!!!!   She is the same person who said he would never walk again and did not help him get into a rehab program!

So we have back-stepped a few paces and it is back to the drawing board.

I have been spending all the time i can with him when i am not at work, i do as little as i can get away with around the house so i have time for him.  He is doing better then a few weeks ago but still seems very fragile so i will have to wait awhile before i start up with the bladder thing.

How is Nico doing?  He was having a hard time for awhile there, and you i am sure also.  I would say yes my son does fell guilty about how we have changed our lifes for him. But there is nothing more important to me then my son and i am trying to convince him of that and spending my time with him i think he gets it.  I even called in to work one night so i could sit up with him and watch movies all night till he fell asleep.  After that he did start to come around alittle.

I do feel guilty when i am not with him, but there are times i just want to sit and read or watch t.v. by myself i need to be alone sometimes and he used to be that way too.  I think he may be afraid to be alone right now, he is just going through somthing right now that i do not understand.  I really would like to ask him but being a guy and me being his mom he just does not always open up.

Now talking to you has given me some ideas and i am going to talk to my husband about them.

thanks so much,

gzarnke

 

[cate]

Hi Gzarnke
Sorry to hear about your son, and that you cannot get him motivated.  I also think perhaps a councellor route would help.  It  would perhaps help you all ( your husband and yourself).  As you also need support.  Can you not try another Doctor, did seem she was not a lot of help, and perhaps some plain talking directly to her would help things along.  Why would she not help with the rehab? I do know that depression  is a big problem, ask some pretty straight forward questions,
I am not a lot of help, as my daughter is able to walk with crutches, and lives alone and also works part time.  I of course do worry,  as she also has BSS and  a few other problems, but is so independant,  that I really am thankful for,
Like all mums I do try to go round her house and do jobs for her, ,that she cannot do herself,  but also must make sure I do not overstep with my help. 
Do you think that with your son, perhaps you must step back a bit, so that he will try and help himself, (cruel to be kind).   Hope you get some help for you also.  Cate

[wheels5894]

Hi! I think the question of motivation is one that can be quite hard to solve. Things are so obviously different and nothing works like it used to that everything is tough. Mind, rehab ought to be about this as well as practicalities.

Now, I agree with the replies before me and don't really have much to add except that a supra-pubic catheter would be much better than an ordinary indwelling one. A tiny procedure is done to insert the catheter through the lower tummy into the bladder. It needs changing only every 12 weeks and can have a valve or a drainage bag for free drainage. I settle for the latter and with an 800ml bag can 'last' some time. See if something along those lines might make him feel he can cope with the world.

[gzarnke]

Thanks everyone for the input.  I am slowly working my way into getting my son to see the Urologist, he is dead set against it and i have been working on him. I think that a councellor would be helpful, i need just the right one.  I will have to start interviewing people and see if they will come to our home at first.

My son has agreed to see our family DR. I got my husband to talk to our son and he has gotten him to agree to this. I have spoken to my DR. regarding my son and he is very interested in seeing him!!  I am so glad.

I just have this feeling that my son is staying away from all DR. so that he will just get sick and die.  I know my son and in know in my heart that is what he is doing.  He has not changed his cath he is using all month and i have several for him, he keeps his cath in alchole and he has not added any to the container or changed it in days.  I keep a close eye on the container and keep it full or new when i get into his room.

I need his dad to help me more with getting through to him.  I think my husband just does not know what to do and he does try to avoid any stressfull or unpleasant situations.  My son listens to him and will talk to him about this subject where as with me he gets very upset, it is a guy thing after all.

I just know that he will do so much better if he could get out and i know that he has such a full life ahead of him.  everyone here has gone through every phase a life could go through and each and everyone has a rich life.  Maybe not all of you feel that way every day but by losing you have gained a very different path in life then what you would have taken and have much to be proud of.

Gzarnke

[cate]

Hi Gzarnke
I am sorry  that you seem still to be having a tough time with your son.  I know you only want to do the best for him, but he must also need to help you with this.  Once he came home from hospital etc,  were there not any home visits from Your GP and PT and OT
I know things are different in America, but here  there is usually some follow up.  If we are able to get the clinics or hospital etc  we go there for out patients, but if not we do get home visits,   My daughter was under to hospital for sometime, after her ops.  and also for many years I looked after my mother in law, who had MS, I had the district nurse every day for her, and also GP came home visit about every 4-6 weeks,  and if any problems the district nurse would ask him to call sooner.  Will say our after care may not be quiet so good now with all the cut backs.  but help is there if needed and we pull the right strings,  Do think you son needs more help, and I think you must give him some tough love, also your husband,  is there any other siblings who could help, I know you have a daughter,  but  perhaps you need a male for these problems.
You will wear yourself out with worry, so do a bit of leaning on other people for help
cate

[gzarnke]

Hi cate

when he first came home from the hospital he was still in pretty rough shape so a nurse did come once a week and he had a pt for a short time so that once he was able to get in and out of his chair she was done and did not come any more.  I really want to get the glider attachment for his stander and i just talked to my husband to have him speak with our son about using the glider.  The glider will work his arms his legs his whole body will get a work-out and he can do it at home. 

My husband says he is afraid to push him too far or he will tune him out,  i know my son and he really does need to be pushed he turns me out as he knows his father is there!  I can have my daughter talk to him about trying to work at getting in better shape they are very close in age so have always been friends.

My daughter has said in the past she wants to just be his friend, well i think that being a friend means that you have to step in once in awhile and speak up. I will work on her too.

I go to work and when there i try to have a good time and not think of anything, i have been working saturdays too alot so i do get some time out.  And i stop at a place right on my way home from work called "curves for women" to work out for 30 minutes 3 times a week.  I am trying to take care of myself.  I want to live to be strong for as long as my son needs me so i am being carefull and trying to get healthier.

This forum is where i come to talk about my feelings and concerns and there is so much good information here and great people to talk to, like your self and Gary. I love gary he is just great.   i have to say there are times when i do feel like i want to scream and all of a suden i get this punch in the stomach that says hey this really happened to my son and it is not a dream and we are really going thourgh this tough time.

I can't explain it but it will just come over me all of a suden and it is like a shock.  Then i feel bad because it should not be such a big deal and we should get on with it as he could still do what ever he wants just sitting down,  then i think well that is not right either.  kind of just mixed up about things yet.

i am just so glad that i can come here and have people understand.

gzarnke

[wheels5894]

Hi, again! I hate to see how this is taking so much out of you when it is your son who needs to get moving, but as a dad myself I know the problems.

It just occurred to me that there might be another source of help not yet tapped - his friends. I presume he knew various people before his accident so is there any chance of getting any of them to come a svisit him and try and motivate him? What he won't talk about to you might just seem OK to talk about to friends. It may be a long shot but  maybe worth a try.

Has he looked at any of the SCI forums at all? It could be worth a try to see if he would. I wouldn't mention this one because of your posts but you could try http://www.apparelyzed.com/forums/index.php?&CODE=00 which is a big and very peopled forum and he would get replies quite quickly from then.

Well, sorry, but I can't think of anything else at the moment though I'll give it more thought. It is just that he could be leading a very full and active life if he could get out of his obviously depressed state. Has the GP seen him or considered depression as a diagnosis? It is a serious possibility and treatment could make a huge difference.

[gzarnke]

Hey Wheels,

he has a friend that comes over every week-end, one or two days of it and they play cards and such.  This friend has tried to get my son out and did tell him that he does not expect to be coming over to our house forever to visit and wants my son to come to his place too. My son in-law comes to visit and they talk and there again my son in-law does not want to push my son as he had cancer when younger and knows what it is like to be depressed???

I most certainly think my son is depressed he was on an anti-depressant but he did not like them and stopped taking the medication, it also helped his nerve pain!!!

He always was one stuborn guy.  there was just a phone call this morning for my son from someone, i am not sure who, sounded young and i am hoping maybe a contact that can talk to him!  My son is still in bed yet so i will have to wait and have him call the number back when he gets up.

I really hope this is some one his age with a sci that can talk to him.   

thanks so much for all the ideas and being a parent you understand, i will give him the address to the other forum. 

gzarnke