6 replies to this topic

[Arizona1060]

Hello All, I'm still fairly new to this forum....I've been reading a lot of the posts on here so I can learn and gain some insight... I now find myself needing a little advice of my own.

Brief summary: My stepson, 22 y/o, was in a motorcycle accident in Sept 2010, it's almost been a year. He was released from rehab in Feb 2011 and came to live with us. He initially was doing very well, he was even driving himself all over town....being somewhat independant. Within a month or so of being home, he developed several bedsores, two healed...however, the third graduated to Stage IV. That being said, he was admitted to the VA hospital again to care for the wound...after a month they sent him back home (with a wound vac) to get his protein levels up so he can have surgery. He's been home for two months on the wound vac and has taken a turn for the worse....he doesn't eat, he lays in bed all day/night, and he doesn't take his protein. He started feeling ill so he went back to the VA for a routine appt last week to check on his status to see if he was ready for surgery....come to find out he now has developed another bed sore on his side and the original wound now has an infection....bone infection. We went to see him in the hospital yesterday and he was not "happy" to see us. Let's just say it was a battle.

I believe he is severely depressed. He refuses to research his condition or how to care for himself...he said "it's not him"...he would rather ask the nurses....by that time, he's health is already at risk from complications of not taking care of himself...I don't think "trial by error" concerning your health is the right way to go.....we have let him do things "in his own time"....but it is counterproductive to his health....and now with the bone infection....this is even a bigger set back. So we've tried to push him a little bit by giving him reminders to take his protein, to eat, to get up and "blow the stink off"...to check himself for sores....not a constant nag but every few days to ensure he takes care of himself....well, he pushes us away. We told him to find a support group or come onto this forum...he said it's not him.....what can we do? My husband and I even want to find a support group (caregivers or with other sci patients); however, we live in a small town so there may not be one available. We are worried he has given up!!

There is a lot more I could go on about, but I wanted to brief....how do we help him? how much do we push? right now, letting him "take care of it himself" is not the answer....especially since his health is in jeopardy...i know everyone is different but he won't even talk to us about how he's feeling...he won't seek any help....any advice would be helpful....thank you in advance and God Bless!!

[pinkcloud]

Hi Arizona

Its hard to say a definite answer I'm sorry.

I dont care for meself as well as i ought to, i am supposed to use a catheter i wont. I supposed to take better care of me feet I dont. I was meant to go for follow ups but didnt as i got so sick of going to hospitals.

I think of it like this, society knows to eat less, take more exercise, dont smoke, dont drink, dont take drugs, dont go over speed limits....and many still do and these are just simple habits - dont start..ya dont have to stop. People stop because they recivee bigger gains by stopping doing these things.

With sci its..do this...do that..so we do and..we still get another loads of symptoms in other areas. Its a full time job to us. And sometimes, just too much bother. We just want to pretend and forget it exists. I feel sooo much for our loved ones as they see the outside of us - we dont. Even in mirrors we can have selected eye sight.

if hes not on meds for depression maybe he would try them? Nothing to be embarresssed of, its simply brain chemical changes. It can be a kick start for him. And go on from here maybe.

Thank you, God bless you and your family too

[jscott92064]

Arizona1060, on 23 August 2011 - 05:42 PM, said:

Hello All, I'm still fairly new to this forum....I've been reading a lot of the posts on here so I can learn and gain some insight... I now find myself needing a little advice of my own.

Brief summary: My stepson, 22 y/o, was in a motorcycle accident in Sept 2010, it's almost been a year. He was released from rehab in Feb 2011 and came to live with us. He initially was doing very well, he was even driving himself all over town....being somewhat independant. Within a month or so of being home, he developed several bedsores, two healed...however, the third graduated to Stage IV. That being said, he was admitted to the VA hospital again to care for the wound...after a month they sent him back home (with a wound vac) to get his protein levels up so he can have surgery. He's been home for two months on the wound vac and has taken a turn for the worse....he doesn't eat, he lays in bed all day/night, and he doesn't take his protein. He started feeling ill so he went back to the VA for a routine appt last week to check on his status to see if he was ready for surgery....come to find out he now has developed another bed sore on his side and the original wound now has an infection....bone infection. We went to see him in the hospital yesterday and he was not "happy" to see us. Let's just say it was a battle.

I believe he is severely depressed. He refuses to research his condition or how to care for himself...he said "it's not him"...he would rather ask the nurses....by that time, he's health is already at risk from complications of not taking care of himself...I don't think "trial by error" concerning your health is the right way to go.....we have let him do things "in his own time"....but it is counterproductive to his health....and now with the bone infection....this is even a bigger set back. So we've tried to push him a little bit by giving him reminders to take his protein, to eat, to get up and "blow the stink off"...to check himself for sores....not a constant nag but every few days to ensure he takes care of himself....well, he pushes us away. We told him to find a support group or come onto this forum...he said it's not him.....what can we do? My husband and I even want to find a support group (caregivers or with other sci patients); however, we live in a small town so there may not be one available. We are worried he has given up!!

There is a lot more I could go on about, but I wanted to brief....how do we help him? how much do we push? right now, letting him "take care of it himself" is not the answer....especially since his health is in jeopardy...i know everyone is different but he won't even talk to us about how he's feeling...he won't seek any help....any advice would be helpful....thank you in advance and God Bless!!

What does he do for fun? You have to remind him to have fun. My husband had a similar type of setback. Came out of rehab doing fine and then a pressure sore happened. I think having the pressure sore forced him to deal with his grief about his new body.

So for the last two years I have bought him more "toys" than ever before. Try getting him one of those remote helicopters so he can fly it indoors from his bed. Horizon Hobbies (you can find them on the web) can help you. I was able to call them and tell them about my husband's experience levels. There's other types of "toys" too -- my husband built a remote-controlled truck while in the hospital. There's remote-controlled cars, motorcycles, boats --you name it - these toys are out there and the prices are reasonable these days.

You can purchase a "real-flight" simulator at Tower Hobbies, if he's excited about flying, and he can do that from his bed. It has everything you need to "simulate" flying a real helicopter or airplane and is a good start to flying. (My dad who is 76 loved it --never seen him laugh so hard and enjoy himself!)

You can go to the Academy of Model Aeronautics and see if there's a flying club near you. You might be surprised --there's alot of clubs out there.

That might be in the future, once he's back moving around independently on his own again.

The point is that these "toys" got his mind working again and he had fun playing with them. Also, before he found a club, he would just roll outside and fly these planes around (or drive the remote cars around). Talk about a "male magnet" --so many boys and guys around the neighborhood would stop by just to watch him play and to talk to him about.....his toys --not his paralysis!!

Just a few thoughts for you. Hope it helps. Good luck!

[wheeliebear75]

Well....being that I was a 14yr old kid AND that I had the luck/misfortune of having my Mom being a certified OT....I say misfortune cuz I got my very own 24/7 PT-SS(Nazi). It was done in LOVE....and in HINDSIGHT I'm glad she did the RoM's & other exercises even on the weekends....although at the time I was often aggravated by them & I was kinda embarrassed by the looking/feeling of my skin when she'd come in during the night....but again....I know WHY & I'm GRATEFUL in the end. Have you brought any of this stuff up with the staff at the VA? I'm sure they've had this sort of thing happen more than once & can DO something.....but they have to know EVERYTHING that is going on with him.

Edited by wheeliebear75, 24 August 2011 - 08:15 AM.

[Arizona1060]

Thanks for the replies! As usual there is always some good information coming from those that understand...very much appreciated.

I understand (at least try to) that even taking all the precautions and being proactive concerning your health may still lead to complications....I guess in our instance, I don't see him taking any approach....and that what worries us. He has been home since Feb and we have had one "serious" discussion....and only recently started "reminding" him every few days that he needs to take care of himself....since we've seen the problems get significantly worse with the bed sores and his health. I took a lot of what wheeliebear said to heart...in that it's both a blessing and little bit of a pain when you have the nagging done out of love...we hold on to that in hopes that he might think we're pushing too hard now (i don't think we push enough) but one day he will be grateful and LIVE life. We know we don't want to nag him because I know he has enough to worry about and I'm sure at 22 y/o, parents still don't understand ;o) I just worry if we don't say anything he will totally ignore his health. Yes, I brought one of nurses out and talked to her the other day regarding my concerns of his depression. She indicated she suspected the same thing as he's not really eating at the hospital either....she said she would contact the social workers so they can refer him to get some assistance....hope he takes it....when we suggested support groups or letting it out in a forum he refused.

As far as hobbies, those are great suggestions. He actually has a remote helicopter....he built his own computer when he got home, he bought a new game system, he took up origami...all great stuff to keep his mind occupied...I guess I wish he would get out into the sunlight more....all these things he does in his room. He'll come out for an hour in the evenings when we have dinner.....the other issue is that I've done some research on his current infection....I guess with the bone infection they will need to keep him on antibiotics for at least 4 to 6 weeks....then he still has the two bed sores to deal with...one of which he's been waiting to go to San Diego to have surgery on....that means once he's "healthy" enough for surgery he will still need to be in the hospital for 4 to 6 weeks recovering....so we're looking at about 2 to 3 months or more in the hospital. i worry that will make him more agitated, angry and depressed.....

All we can do is still be as supportive as we can...and hope he realizes it comes from a place of love...my hope and prayers are for him to be able to LIVE life not to just exist..I admire many of the people in this forum for all they have accomplished and overcome through their experiences....I want the same for my stepson...

[jscott92064]

Arizona1060, on 24 August 2011 - 03:17 PM, said:

Thanks for the replies! As usual there is always some good information coming from those that understand...very much appreciated.

I understand (at least try to) that even taking all the precautions and being proactive concerning your health may still lead to complications....I guess in our instance, I don't see him taking any approach....and that what worries us. He has been home since Feb and we have had one "serious" discussion....and only recently started "reminding" him every few days that he needs to take care of himself....since we've seen the problems get significantly worse with the bed sores and his health. I took a lot of what wheeliebear said to heart...in that it's both a blessing and little bit of a pain when you have the nagging done out of love...we hold on to that in hopes that he might think we're pushing too hard now (i don't think we push enough) but one day he will be grateful and LIVE life. We know we don't want to nag him because I know he has enough to worry about and I'm sure at 22 y/o, parents still don't understand ;o) I just worry if we don't say anything he will totally ignore his health. Yes, I brought one of nurses out and talked to her the other day regarding my concerns of his depression. She indicated she suspected the same thing as he's not really eating at the hospital either....she said she would contact the social workers so they can refer him to get some assistance....hope he takes it....when we suggested support groups or letting it out in a forum he refused.

As far as hobbies, those are great suggestions. He actually has a remote helicopter....he built his own computer when he got home, he bought a new game system, he took up origami...all great stuff to keep his mind occupied...I guess I wish he would get out into the sunlight more....all these things he does in his room. He'll come out for an hour in the evenings when we have dinner.....the other issue is that I've done some research on his current infection....I guess with the bone infection they will need to keep him on antibiotics for at least 4 to 6 weeks....then he still has the two bed sores to deal with...one of which he's been waiting to go to San Diego to have surgery on....that means once he's "healthy" enough for surgery he will still need to be in the hospital for 4 to 6 weeks recovering....so we're looking at about 2 to 3 months or more in the hospital. i worry that will make him more agitated, angry and depressed.....

All we can do is still be as supportive as we can...and hope he realizes it comes from a place of love...my hope and prayers are for him to be able to LIVE life not to just exist..I admire many of the people in this forum for all they have accomplished and overcome through their experiences....I want the same for my stepson...

If he's going to San Diego, maybe I can have my husband visit with him if you think that would make a difference? The injury level is very close. Let me know and I will ask my husband and see if he is up for it. I don't know if he would or not. As I said, my guy went through a journey very similar to your stepson's. At the very least, they can talk about their "toys". My husband has lots of them --ha ha. Will you be in San Diego with him? Why don't you privately pm me.

[airart1]

well, its pretty tuff being so new to the chair and being down a long time getting surgery so soon, i went 12 years before my first sore and was up working 14 hours a day, and it will sure take it out of you after having to be so immobile for such a long time, but i wanted to get it fixed and be back up living, i hope he gets better and decides to get the problem behind him so he can get on with life, there is life after pressure sores, but its a hard road, and he will have to make some more even tuffer lifestyle changes, i wish him the best.....sounds like wheeliebear has about hit the nail on the head, depression is tuff also to conquer, almost as bad as the sci.....

Edited by airart1, 24 August 2011 - 08:08 PM.