its been a year since i've been to this site.  my son is now in a powerchair full time and is 12 yrs old.  I find myself physically and emotionally exhausted.  It has been such a change in how we help our son.  How do you get through it all?  My husband and I now do almost everything for our son.  I find myself getting overwhelmed!  Help!

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Hello Dina,

I'm sorry to read your message about your son and the affect it is having on you and your husband.  I have two sons who have DMD and use powerchairs for mobility.  I realize each situation is different and family dynamics play a role in how our sons act, so my comments are based on our experiences and in no way should appear as anything different.

Once my sons began using wheelchairs for mobility they actually gained independence as they were able to get around on their own.  My wife and I need to retrieve things for them, but once they have their books, computers, game devices, cell phone or homework, they are fine.  My older son (19) needs more help than his brother (17), yet I wouldn't say we do everything for either one and expect our sons to do the things they can. 

There are many nights I get up many times to turn my older son, but I realize this allows him and my wife to get some sleep.  We also try to break tasks up, do things together and give each other time to do things we like to avoid becoming overwhelmed. In my opinion one big challenge parents face is finding balance.  No one parent can do it all and each of us needs time to rest.  Can you and your husband look at finding times when one person takes responsibility for your son and gives the other a break?  Is there family who can take over a few hours while and give you time to get away?  Have you tried speaking with people at the Department of Human and Family Services to see if there is respite care or in home care for which your son might qualify?  Are there things your son is asking that he might be able to do himself if things were arranged in a manner where he can get things?  

I know it isn't easy caring for a son with DMD.  I hope others will add their input and provide you some ideas based on their experiences.

Brian

 



Brian Denger said:

Hello Dina,

I'm sorry to read your message about your son and the affect it is having on you and your husband.  I have two sons who have DMD and use powerchairs for mobility.  I realize each situation is different and family dynamics play a role in how our sons act, so my comments are based on our experiences and in no way should appear as anything different.

Once my sons began using wheelchairs for mobility they actually gained independence as they were able to get around on their own.  My wife and I need to retrieve things for them, but once they have their books, computers, game devices, cell phone or homework, they are fine.  My older son (19) needs more help than his brother (17), yet I wouldn't say we do everything for either one and expect our sons to do the things they can. 

There are many nights I get up many times to turn my older son, but I realize this allows him and my wife to get some sleep.  We also try to break tasks up, do things together and give each other time to do things we like to avoid becoming overwhelmed. In my opinion one big challenge parents face is finding balance.  No one parent can do it all and each of us needs time to rest.  Can you and your husband look at finding times when one person takes responsibility for your son and gives the other a break?  Is there family who can take over a few hours while and give you time to get away?  Have you tried speaking with people at the Department of Human and Family Services to see if there is respite care or in home care for which your son might qualify?  Are there things your son is asking that he might be able to do himself if things were arranged in a manner where he can get things?  

I know it isn't easy caring for a son with DMD.  I hope others will add their input and provide you some ideas based on their experiences.

Brian

 

Hi,We all are in the same situations where sometimes you look at our kids,you try to do your best, but the reality is harde.All we can do is pray for them and for our selves also.asking God to give us the streinght and the courage to face the reality.Be strong,have faith on the CREATOR.

Thanks for the encouragement, My husband and I do take turns helping my son.  It is just hard lifting him from bed to chair.  I have a hoyer lift but you still have to get him on it.  I guess i just wanted to know that i was not the only one going through this. What kind of bed do you have your son in?  Is it a hospital bed?  I try to make things easier for my son to get to.  I have arranged his room so he can get to things.  What other ideas do you have for his room?  What do you do, that maybe i have not thought about?  Because he has moved to the wheelchair permanently, should i  be doing anything in particular?  Thanks for the help,

 



djamel fathi said:

Hi,We all are in the same situations where sometimes you look at our kids,you try to do your best, but the reality is harde.All we can do is pray for them and for our selves also.asking God to give us the streinght and the courage to face the reality.Be strong,have faith on the CREATOR.

 

My faith gets me through it, i just need to know I'm not alone in this journey with my son.  Thanks for the encouragement.

 

I am not yet near this point, though I can empathize.  Hang in there.  I wonder if there would be any benefit to a service dog?  Sometimes I can imagine that might add more work and doesn't help with transferring your son from one element to another.  But there are other things these wonderful pups can do.

 

Dina, hang in there and I think Brian gave some great advice.  He has gone through it already with two boys, so imagine the challenges.  It is not easy, but recognizing it as a challenge and talking about it and asking for help is the first step.  Good luck!  Hang in there.  Carolyn 

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