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

[golfgal]

To go along with the college analogy, you will probably see Christian more then you will your DD when she goes off to college. I expect to see our DS maybe every couple months once he goes off to school where as I would think you would see Christian several times a week.

 

[Tracy Savage]

God bless you and your family Minky. I hope it all works out for you.

 

[charming23]

No advice here just :hugs: and prayers that you can find a solution to best suit everyone's needs.

 

[Tinker'n'Fun]

Minky may you be guided through this journey with compassion and love. I am sure you are making the right decision.


**As a sidenote, since that "comment" has been removed by a mod, maybe we could have the compassion to also remove them from our posts. I know it goes against the "rule", but would be the proper thing to do for Minky....

 

[Fizzgigmt]

I have worked in Case management of elderly and disabled for 13 years, first as a CNA and now I am a Social worker. I teach classes on how to care for yourself while caring for a loved one. I am telling you that you are doing the right thing. By putting Christian in a group home you are placing him somewhere that he can be cared for and the time you spend with him can be enjoyable and full of love, not despair. Your daughter will be leaving home soon and you need to spend what time she has left with her and caring for yourself. I am the same type of person as you, I care for everyone else before myself. Just know that anyone who really understands what it is like to be a full time caregiver would never question your motives. If your social workers that you have to work with don't know that then they are either very new or not in it for the client and the family. You are making the best decision for your FAMILY-- ALLL OF YOUR FAMILY, not just yourself or your son. God's blessings upon you and I hope you have many wonderful visits with your son and many amazing years with your husband and daughter. You are an amazing person and a wonderful mother.

 

[EllenFrasier]

We have a learning disabled son who is 20. I often find myself sleepless at night with thinking about what will happen to him some day. How will he take care of himself, where will he live, how will he survive? I can empathize with what you are feeling and hope that all goes well for your family.

 

[Eeyores Butterfly]

Minky...

I used to work at a residential center for people with profound disabilities (most of our residents were completely nonverbal, had little to no independent movement, etc). The company I worked for was very caring. They went out of their way to make sure our reisdents had community interaction. We made sure their rooms were decorated in things that they loved, and even put posters on the ceiling since that is where most of them looked.

We did have a few school aged kids. I will never forget the time we got a new resident. It was a similar situation to yours. It absolutely broke the mother's heart to do it, but they had reached the point that you are talking about- physically they could no longer take care of her. They got to visit her whenever they wanted. The workers took very good care of her, and in the end it was best for her family. Group or residential homes don't have to be as scary as people think of them. And in the end, they can be a lifesaver for your family.

I wish you all the best. I'm sure that you will be able to find a home that fits your needs and Christian's needs, and in the end it will be right the decision for your family, even if it is a hard one.

ETA: We also did respite care at our home. Maybe you can find one that does respite care so you can "test it out" to help you decide if it is the right place. That way when you go full time, you will all be more comfortable with the choice.

 

[minkydog]

I wish to say thank you to you all who have been so encouraging. I know it's a difficult subject for a lot of people. And thank you for remaining civil when someone had a difference of opinion. There is still free speech in this country and it's alive and well on the DIS. Seriously, several of you have given me ideas to consider and I will be discussing this further with my husband. There will be no quick cure in this situation. Rather, I'm hoping for a gradual, positive transition for all of us. I'll keep you posted as we get new information. Thank you so much. I'm feelin' the love tonight.

 

[4nana]

Minky, my heart and prayers go out to you and your family sweetie. Your threads are testimony to the wonderful, loving, devoted, wife and mother you are and above all sweet Christian's well being has been first in your family's hearts and lives.

I can't imagine being in your place having to make this heartbreaking decision . You have devoted your life to your family and it's many health crisis' some of us can't imagine. I could only hope to be as strong and courageous as you, day in and day out, but there comes a time when something must give and you must do what is best for all concerned.

As all your Dis friends, I send prayers for finding the proper care that Christian's needs be met. Then, you will no doubt enjoy each other's company as much or even more without the stress of 24/7 care and worrying 'what if' something happens to you or your DH and what will happen to your sweet boy. Know your friends support you in your decision and send you {{hugs}}, prayers, a peaceful heart, with hope that you and the higher powers help find the perfect solution. Godspeed and take care of yourself too.

 

[EMom]

I had an aunt and uncle who had one child. I think they only had ONE because once she was born and they realized the extent of her issues, they knew it was all they could handle. I'll call my cousin Ann.

Ann was born around 1930. Back then, they didn't even give you much of a diagnosis, but my best guess would be something like SEVERE cerebral palsy. She never developed physically (ability-wise) past about 6-9 months. She grew to adult size, but was petite like her mother. We think she was bright enough, but since she couldn't talk or communicate except through some limited facial expressions, that was more our feeling than a medical certainty.

In those days, the advice would have been to have put her in a state home (in which case she would have died young....think of the conditions back in 1930) or keep her home and enjoy what time you have with her. My aunt and uncle kept her at home.

I cannot begin to explain the awe those two inspired in everyone because it defied all probability that they were able to take care of Ann the way they did. But I'll be blunt. No one in our family had much money.......Except them. They were loaded. And they spent a fortune on her care. If you put it in today's dollars, over her lifetime it could have been in the low millions. My aunt didn't work and my uncle had a ranch and oil interests....in other words, lots of free time. They devoted their entire lives to her. A big adventure was taking her for a drive. And as they got older and couldn't manage the lifting, they were able to hire help 24 hours a day.

But seriously.....How many people could do that? Precious few! Had Ann been born into another family, she would never have done as well or lived as long as she did. Not because my aunt and uncle loved her more than other parents would have, but because they were blessed with the resources to take care of her in a way that almost no one else could have.

She lived until her early to mid-60s and even her doctors were amazed. Her parents outlived her, dying at 85 and 95. I cannot tell you how many times my mother and father (remember, we had NO money) thanked God that my aunt and uncle HAD money so that Ann could be taken care of. We all knew the money made the difference. Normal, everyday people have JOBS. Normal people cannot pay for 24 hour care when their backs start to go out. Normal people cannot have help cover them so they can have a break. Normal people don't have maids and if they need them, cooks and .....you name it.....a hired worker to do whatever other job needs to be done. Because normal people are DOING all those things THEMSELVES! And on top of that, they are taking care of a child that is an extraordinary drain on them.

I don't tell you about my aunt and uncle to make you feel bad..... I do it to let you know that our family soberly realized that had they NOT had that much money, they simply could not have physically taken care of Ann they way they did. It would have been impossible. And we often thought of all the families that were NOT as fortunate. Heavens, it was hard for them even WITH all that money.


You have done the best you could for as long as you could. If it has come to a point where you are no longer the best caregiver for your child, then placing him in another setting is not a bad thing. If you put yourself in an early grave caring for him, what would happen THEN? There is no easy, nice, clear answer here because this is not an easy, nice, clear situation. But please don't feel guilty if you've reached your limit.

I truly feel for you. Actually, I had a cousin on the other side of my family who was profoundly mentally disabled. When both parents died, another relative took him in. When they died in their 90s, yet another took him in. He was in his 70s when he died. But growing up watching those two cousins, and always seeing my parents worry about what would happen to them, made me keenly aware of how hard it is for parents of severely disabled children. The constant worry about what will happen to them if something happens to you. And so many other things. Until people have lived this, perhaps they cannot understand the fear and worry that comes with such a situation. Thankfully, MOST posters here have at least tried to be empathetic. Life has handed you a rough deal and you've handled it the best you could. I'm sorry you have to make this decision now, but know that you're still a good parent.

 

[ead79]

minky, please know that prayers are being said for you and your whole family. May the Lord give you wisdom, peace, and comfort as you make these decisions and look for the best option for Christian.

 

[wdwfan16]

You have to do what is best for Christian. Since your DH is very ill could you do this all by yourself? What about when your DH needs more care, what would you do? Now maybe the time to do this.

 

[Happy Mom2]

I just wanted to say that I can not imagine what you are going through. My thoughts and prayers are with you and your family.

 

[N&B'smom]

 

[FireDancer]

Minky, I have no advice or anything like that but from what you talk about here with your son's problems you seem like an amazing woman who should be proud or herself for what you have managed to do for him thus far. I imagine that many of us wouldn't be able to cope with what you are dealing with even in perfect health.

I'm sure whatever decision you come to will be made after a lot of thought and will be the one that works for everyone.

 

[3prettyprincesses]

Minky, I have no advice or anything like that but from what you talk about here with your son's problems you seem like an amazing woman who should be proud or herself for what you have managed to do for him thus far. I imagine that many of us wouldn't be able to cope with what you are dealing with even in perfect health.

I'm sure whatever decision you come to will be made after a lot of thought and will be the one that works for everyone.

Perfectly said. None of us without a disabled child (to the same extent as minkydog) can understand the everyday difficulties there are in caring for her son.

I've followed some of your posts too Minky and you are a wonderful mother and wife. I'm sure that whatever decision you make will be the right one, one from a mother's heart doing her best for her son. Christian is blessed to have a mother like you and I'm sure he knows that.

 

[JOCAmom]

Minky, I have no advice for you but lots of hugs. My SIL is in the same sort of situation as you. Her daughter is severely mentally handicapped and has turned violent. Her last thought has always been not to find alternative living arrangements for her daughter. But now things have changed so much that she is facing the same decision as you. My prayers to you and your family. I know in my heart you will make the best decision possible for everyone.

 

[EeyoreEma]

No advice, but hugs and prayers coming your way. You'll make the decision that is right for all of you.

 

[Buckalew11]

I agree! I never would have thought anyone would say anything that horrible on here. I think that was probably the worst thing I've ever seen on these boards.


Minkydog, you are an amazing person. I'm sorry it has come to this for you, but I know you are doing the right thing. I hope you are able to find the perfect group home for Christian. As with most parents and their kids, you won't be able to be there for him forever. I think it's good for you to get him settled somewhere while you are able to make sure he's safe and happy, and while you can still spend time with him. I imagine that will be much easier on him than it would be if he suddenly lost you and then his whole world changed.

Minky, I've shared with you in the past how well I think you and how you inspire me because even my worstdays aren't as stress filled as yours surely are just in day to day activiities. God Bless You.

 

[Stitchfans]

do not know what to say