Difficult decisions...( don't know if this is a vent or a cry for help~Oy...

[minkydog]

DH and I have come to the conclusion that we are not going to be able to keep Christian home much longer. He's a full-size 15yo now, with the mind of a 1yo. I won't belabor the whole thing other than to say it is a LOT of physical work to keep him safe, dressed, clean, and entertained. DH is very disabled with heart/lung disease and I'm battling depression again. Ever since we got back from vacation, when Christian went to a respite provider for 5 days, I've become more and more unhappy. I think on the vacation I really had a good look at my life, how constricted it is. How much we all give up, especially DD17. Every decision we make is made depending on whatever Christian can do. Go out to eat? Need to make sure there's something Christian can eat. Wanna go to the movies? Oh, that's right. Christian can't sit through a movie. How about the beach? One of us has to literally be standing behind him within arm's length, in 18 inches of water because he can't keep himself upright in deeper water and has no sense of danger. Even camping, the one activity we have left, has become a chore because we can't get a minute's rest for trying to keep him from falling off a cliff, gettin lost in the woods, or stepping out in front of a car.

We have known this day was coming for a very long time. Our plan has always been to move him into a group home eventually. When he was little it was "when he's 25 or 30." Then in his pre-teens it was "when he graduates HS at age 22." Then it was "maybe when he turns 18." Now it's "Lord, let me just get through another day." Last night, DH wrote an email to our two social workers, their bosses and the head of Georgia DHR. We have to get some relief before one or the other of us falls off a cliff ourselves!

I'm really hoping they can help us. And I'm REALLY hoping they don't take this email and decide we're unfit to keep him safe at home. I don't want to reliquish guardianship, I just want to have a life. If we could even get him a place to go spend the weekends, when we don't have school to occupy him and only limited nursing care. Weekends are completely exhausting for us. If one or the other of us tries to go do something with a friend or even with DD17, the other one takes the full brunt of the responsibility. WHen I leave Christian with DH I feel terribly guilty because I know that DH has limited physical resources.

I sure hope this doesn't come back to bite us...

 

[Sparx]

 

[ilovejack02]

I don't have anything to say, but I will be thinking about you. Been on the Dis for a few years now and I don't ever really comment on your threads much, but am always impressed with you and how much you care for your family .

Hugs to you!

 

[TheZue]

((((hugs))))

Can you get some sort of respite? I really hope your case worker comes through for you. For what it's worth I don't think you sound unfit, just tired.

 

[RitaZ.]

No advice to offer. Just to you.

 

[disneybound2010]

No advice, just lots of

 

[LUV4EEYORE]

 

[swald91]

Wow. Sounds like you have alot on your hands. I can't say that I've ever been in your shoes, but making a decision like this sounds heartbreaking. We give up so much for our children and sometimes it's not fair to the other children-always hoping they understand....stay strong

 

[pixiefairy]

I can't even fathom what you are going through right now...no matter what you decide, know you have a whole bunch of shoulders!

 

[abdmom]

 

[golfgal]

 

[pigletgirl]

Many many blessings to your family! I hope you can get this all worked out and that a good plan goes into place. You have on your plate.

 

[Bluestars]

It's obvious that you love your son very much. I can't imagine the stress you must be under daily. I think working on a plan where you can get some help is a very good idea.

 

[minkydog]

Christian keeps coming over and sitting on my lap, giving me hard hugs. Do you think he knows? We haven't talked about it in his presense. Could he sense our upset, you think? Or maybe he's trying to say "it's okay, mom."

 

[Lisa loves Pooh]

I just wanted to say that I have enjoyed the updates of your family. Being a parent is no easy walk and with a disabled child--it makes it that much harder. I have never witnessed such grace.

 

[C.Ann]

DH and I have come to the conclusion that we are not going to be able to keep Christian home much longer. He's a full-size 15yo now, with the mind of a 1yo. I won't belabor the whole thing other than to say it is a LOT of physical work to keep him safe, dressed, clean, and entertained. DH is very disabled with heart/lung disease and I'm battling depression again. Ever since we got back from vacation, when Christian went to a respite provider for 5 days, I've become more and more unhappy. I think on the vacation I really had a good look at my life, how constricted it is. How much we all give up, especially DD17. Every decision we make is made depending on whatever Christian can do. Go out to eat? Need to make sure there's something Christian can eat. Wanna go to the movies? Oh, that's right. Christian can't sit through a movie. How about the beach? One of us has to literally be standing behind him within arm's length, in 18 inches of water because he can't keep himself upright in deeper water and has no sense of danger. Even camping, the one activity we have left, has become a chore because we can't get a minute's rest for trying to keep him from falling off a cliff, gettin lost in the woods, or stepping out in front of a car.

We have known this day was coming for a very long time. Our plan has always been to move him into a group home eventually. When he was little it was "when he's 25 or 30." Then in his pre-teens it was "when he graduates HS at age 22." Then it was "maybe when he turns 18." Now it's "Lord, let me just get through another day." Last night, DH wrote an email to our two social workers, their bosses and the head of Georgia DHR. We have to get some relief before one or the other of us falls off a cliff ourselves!

I'm really hoping they can help us. And I'm REALLY hoping they don't take this email and decide we're unfit to keep him safe at home. I don't want to reliquish guardianship, I just want to have a life. If we could even get him a place to go spend the weekends, when we don't have school to occupy him and only limited nursing care. Weekends are completely exhausting for us. If one or the other of us tries to go do something with a friend or even with DD17, the other one takes the full brunt of the responsibility. WHen I leave Christian with DH I feel terribly guilty because I know that DH has limited physical resources.

I sure hope this doesn't come back to bite us...

Your decision is one that everyone will benefit from - even Christian - although you may not feel that way right now.. I'm sure that you and your DH will find a place that is safe, able to handle his needs, and allow him to be in a group setting where there are people he can develop friendships with..

You have a very ill DH.. You have another child.. And you are coming apart at the seams.. You're human - and you can only do so much.. You have done so much already.. Now it's time to take care of yourself as well as it appears that you are the "glue" that is currently holding everything and everyone together..

I know this is heartbreaking for you - and your entire family.. But I think it's time - and I think you know that in your heart as well.. Please don't feel bad.. You have done an amazing job.. I would be very, very surprised if anyone thought otherwise..

 

[minkydog]

Sorry you are dealing with this - but didn't you want to do this?

If I remember correctly, you were advised to abort because of the severity of Christian's problems. You made the decision to have a severely handicapped child.

I just cannot feel for a person who decides their path and then 15 years later can't deal. You had options.

(this is not intended as a debate on abortion)

Actually, no, we didn't know that Christian would have a disability, let alone a profound mental disability. We were not advised to abort and I wouldn't have done that anyway. Christian falls into that very small category of people in this world who will never be able to care for themselves in any way. We had no idea--it took two whole years of extensive testing to even get him diagnosed.

I don't think anyone who finds themselves dealing with a handicapped family member thinks in the beginning "I need to ditch right now because I just don't want to deal with this." Disabilities don't just happen at birth. My DH didn't become disabled until he was 47, through no fault of his own. He just got sick with an autoimmune disorder. Do you think I should disown him now that he's not a fully function member of society? I certainly didn't sign up for a disabled husband. But I love him, so I will do what I can to keep him going. What about elderly parents with alzheimers? It's not uncommon for them to became so debilitated that they need round the clock nursing home care. Should we maybe lace their jello with antifreeze? Should we punish their daughters and sons for making the decision to place their full-care parent so that they can have a life of their own?

My issue is that I'm getting older and I have chronic health issues of my own. Not as severe as DH, but they do impact my life. The constancy of Christian's care just never goes away. It's wearing us down. Would you say it is okay for us to work ourselves into a early grave for this child, after which time he will go to a group home anyway? Are parents required to give up themselves for their children? I think everyone here understands that "some day" our children are going to grow up and move away. Why would you think that older parents of a severely, profoundly handicapped child should be made to keep their child home to the detriment of their own health? That just doesn't make sense.

But thank you for your comments. You weren't the first with that particular nugget and I'm sure you won't be the last.

 

[ugadog99]

I'm so sorry. I can't imagine having to make this decision.

 

[EveDallas]

Sorry you are dealing with this - but didn't you want to do this?

If I remember correctly, you were advised to abort because of the severity of Christian's problems. You made the decision to have a severely handicapped child.

I just cannot feel for a person who decides their path and then 15 years later can't deal. You had options.

(this is not intended as a debate on abortion)

I had a long response to this typed out, but it isn't worth the points. Let's just hope you never have a difficult choice to make.

 

[minkydog]

Your decision is one that everyone will benefit from - even Christian - although you may not feel that way right now.. I'm sure that you and your DH will find a place that is safe, able to handle his needs, and allow him to be in a group setting where there are people he can develop friendships with..

You have a very ill DH.. You have another child.. And you are coming apart at the seams.. You're human - and you can only do so much.. You have done so much already.. Now it's time to take care of yourself as well as it appears that you are the "glue" that is currently holding everything and everyone together..

I know this is heartbreaking for you - and your entire family.. But I think it's time - and I think you know that in your heart as well.. Please don't feel bad.. You have done an amazing job.. I would be very, very surprised if anyone thought otherwise..

Thank you, C.Ann. You put that so eloquently and I know that everything you say is true. He *will* benefit from being in a place where they have more help than we have at home. And we will enjoy our times with him when we're not so worn down with the 24hr care and keeping of him. You're right. I *am* the glue that holds the family together. When I go down in flames the whole family suffers greatly. And I just can't allow that to happen. Thank you for your kindness.