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

[KatieA]

Sorry, I don't know how to include previous post. So in response to previous question. Yes we did set up a special needs trust and yes we did fund it with life insurance. Minkdog, I appreciate you bringing up the topic. I don't post much but I do read alot of the posts and it is nice to see that I am not the only one dealing with some of these issues. Sometimes it seems like you are.

 

[autumnpalm]

Minkydog, you have already gotten better advice from other DISers than I know how to give but I don't think anyone who has followed your family's journey could doubt how much you love and care for your son. He is so, so lucky to have you in his life.

You and your family are in my prayers and I hope you will be able to find a solution that gives you peace, comfort and precious time with Christian. You sound like such an amazing mother and I hope you never feel guilty for doing what is best for your family.

 

[TheRatPack]

I just wanted to say I applaud you for parenting him the way you have for the length of time you have. I feel like such a loser parent when I sit here thinking about my 6 year old the same way. We adopted him when he was 3 and sadly he has a lot of attachment issues. Not exactly what you're dealing with...well not really even close LOL But I fear as he gets older (and bigger) that we are going to have to seek out placement for him We've been to doctors after doctors for the 3 years he's been home with us, tried just about everything we knew how and some we'd never even thought about LOL The normal (whatever normal is) realm of parenting skills (and the few 'non-normal we've learned through therapist) just do not work on him....and he gets worse every year.

It has to be one of the hardest decisions ever....I cry just thinking about moving mine in to a residential home. But I know that if it comes to the safety of my other children and my husband and myself....we have to make that decision. I love him more than he knows....he may never really realize it or embrace it.....and I think that kind of hurts too, almost like moving him to a residential home is giving up on him and that he'll bond with the caregivers, forget I was his momma....etc.

You have to do what is best for you family though....parenting is just hard isn't it You never envision ever making these decisions.....but again, you do what you have to for your family and Christian is at the age where this is just another phase of his life, of growing up

 

[golfgal]

Sorry, I don't know how to include previous post. So in response to previous question. Yes we did set up a special needs trust and yes we did fund it with life insurance. Minkdog, I appreciate you bringing up the topic. I don't post much but I do read alot of the posts and it is nice to see that I am not the only one dealing with some of these issues. Sometimes it seems like you are.

To quote another post, select the "quote" button in the bottom right hand corner of the post. If you want to quote more than one, click on the " next to the quote button and it will highlight that, when you have selected all you want to quote, hit quote or reply at the bottom.

I am glad you funded your trust. I know of too many people who have not assuming that the county will just pick up the tab.

 

[minkydog]

I just wanted to say I applaud you for parenting him the way you have for the length of time you have. I feel like such a loser parent when I sit here thinking about my 6 year old the same way. We adopted him when he was 3 and sadly he has a lot of attachment issues. Not exactly what you're dealing with...well not really even close LOL But I fear as he gets older (and bigger) that we are going to have to seek out placement for him We've been to doctors after doctors for the 3 years he's been home with us, tried just about everything we knew how and some we'd never even thought about LOL The normal (whatever normal is) realm of parenting skills (and the few 'non-normal we've learned through therapist) just do not work on him....and he gets worse every year.

It has to be one of the hardest decisions ever....I cry just thinking about moving mine in to a residential home. But I know that if it comes to the safety of my other children and my husband and myself....we have to make that decision. I love him more than he knows....he may never really realize it or embrace it.....and I think that kind of hurts too, almost like moving him to a residential home is giving up on him and that he'll bond with the caregivers, forget I was his momma....etc.

You have to do what is best for you family though....parenting is just hard isn't it You never envision ever making these decisions.....but again, you do what you have to for your family and Christian is at the age where this is just another phase of his life, of growing up

This has to be soo soo hard. Even when you know you're doing the best thing, it feels so rotten. My heart goes out to you.

 

[Jynohn]

Parenting is exhausting even under the best of circumstances, but most of us know that there's a light at the end of the tunnel and the time will come when the emotional and physical toll of catering 24/7 to the needs of our children will come to an end. I can't even begin to imagine how difficult it must be to face an entire lifetime of having someone 100% dependent on my constant care and supervision. You've done an amazing job so far and have dealt with most difficult situation I can imagine with more strength than I could ever hope to have.

I worked at a group home for many years, and the families of all our residents stated that the primary reason they were placing their child was out of concern for their other children. Most of our residents had normal life expectancies and were expected to outlive their parents. The parents felt that it wasn't fair to place that burden on their other children, especially as they had already spent the majority of their childhood (out of necessity) taking a backseat to the needs of their sibling.

It sounds as though taking care of Christian has begun to take more and more of an emotional and physical toll on your family. There's only so much one person can handle, and accepting when you've reached your limit is not a sign of failure. I don't think anyone who has read your past posts doubt for a moment how strong your love is for Christian. You and your family are in my thoughts and prayers while you make this difficult decision.

 

[C.Ann]

I don't think anyone who has read your past posts doubt for a moment how strong your love is for Christian..

This bears repeating..

 

[cabanafrau]

I am fortunate enough that neither our children or our parents are disabled & require care. I do have the ability to understand that placing a child, parent, spouse in residential care doesn't preclude being the parent or still deeply loving your loved one.

Often residential care can be the most loving and caring thing you can do. When it's impossible to handle things at home, residential care can provide a level of care an individual or a family cannot on their own.

I pray never to have to make a decision like this & I certainly wouldn't look down on someone who does.

 

[Myothername]

First off my heart just aches for you. I can't even imagine making such a decision. That said you have to think of your son's safety first. One thing I always go back to in situations like this or placing a parent in a nursing home is what would you do in the case of a fire? Could everyone get out safely? My SIL who is a nut case wanted to let my FIL go back home from the nursing home. The man could barely get around in his room much less find his way out of his house in the dark with smoke all around. Same situation when my mother was trying to place her sister in a nursing home.

Do not feel guilty in any way. Your son will be just fine and your daughter will too. And like others have said it is not like you are abandoning him.

 

[arminnie]

Minky - I have several friends who are 60+ (and unfortunately some deceased) who have had children with pretty major development problems.

You are SO DOING THE RIGHT THING by seeking placement for Christian now. I have watched what my friends have done to make sure that their children have a secure future. In virtually all the cases it has meant placement - sometimes as early as 10 and up to 20. In every single case it has been a positive step for the child.

None of us will live forever. A very sad situation that has been unfolding this past year is a woman who took care of her daughter at home until the mother died in her late 80s. Now the disabled daughter is facing living changes for the first time in her 60s. It is extremely traumatic for a 60 year old disabled person who has never lived anyplace else to have to make this transition. And there are wonderful siblings stepping up to the plate - but it has been so hard. Unfortunately sheltering the daughter for so many years was not really in her best interest.

Not a child - but a parent with Altzheimer's situation that a friend of mine went through. She wanted to take care of her mother, but was wise enough to realize that one person cannot provide appropriate care 24/7. She was the BEST daughter ever - visited her mother sometimes multiple times a day. But the mother needed the skilled care (and backup) provided by a nursing home.

I watched my uncle try to take care of my aunt for about a year or two longer than he should have. He did her no favor (although that's what she thought she wanted). We finally had to get social services involved during one of her hospital stays. He did the best he could. Everyone including my aunt was happier when she got appropriate care.

Some people tend to think of a "placement" as the same thing that used to be shipping a child off to an "institution" and out of sight. Nothing could be further from the truth with today's social programs.

I wish you the best.

 

[Wishing on a star]

This post from just above says it all, so much better than I could...

I don't think anyone who has followed your family's journey could doubt how much you love and care for your son. He is so, so lucky to have you in his life.

You and your family are in my prayers and I hope you will be able to find a solution that gives you peace, comfort and precious time with Christian. You sound like such an amazing mother and I hope you never feel guilty for doing what is best for your family.

I can only send

and,

 

[beck0321]

I wanted to second ARMINNIE's post since my family is going through a similar situation. My grandparents (my mom's parents) had a disabled son that they took care of until the day they had to be placed in a nursing home. My grandmother was extremely adamant about not getting any kind of social care for him, I don't know if she thought she was doing right by him, but it ended up that wasn't the smartest thing to do.

As soon as MY parents became empty nesters and bought a new place to enjoy their time alone, my mom and dad had to take in a 56 year old child, basically (he is higher functioning than most, but he isn't of sound mind and can and has caused some serious problems). They have their good days and their bad days of course, but I just don't think it's fair that this was put on my mom just because my grandmother wouldn't accept help when their son was younger.

He is currently on a waiting list that is like 12 years long just for respite care and assisted living care. The only other option really would be to put him in a nursing home (where my parents live there are no homes for disabled people, they have to go to "nursing homes" where they are pretty much mistreated as we are seeing with my grandparents). My parents have decided they are not going to do that and have accepted that my uncle is just going to live with them until they physically cannot take care of him anymore.

It just concerns me for my parents health and marriage that they have this on them now. To the OP, think about what YOUR daughter might have to do once you and your husband are unable to care for her brother. Is it fair to put this on your other child?

Man, this topic just depresses me to no end. It hits too close to home and I worry about my parents all the time because of this.

 

[sparklynails23]

If Christian were not DD, he would be transitioning to spending more time with friends and moving on with his life living apart from you. He is just doing this in a different way. You have done your job as a parent, now that role will change. It's a natural progression.

 

[Eeyore'sthebest]

Just wanted to send hugs and prayers your way.

 

[scottishduffy]

None of us will live forever. A very sad situation that has been unfolding this past year is a woman who took care of her daughter at home until the mother died in her late 80s. Now the disabled daughter is facing living changes for the first time in her 60s. It is extremely traumatic for a 60 year old disabled person who has never lived anyplace else to have to make this transition. And there are wonderful siblings stepping up to the plate - but it has been so hard. Unfortunately sheltering the daughter for so many years was not really in her best interest.

.

Currently have a very similar situation with my Uncle. He is mentally disabled and is intellectually a 10-11 yr old boy. My grandmother has cared for him his entire life and refused most therapy/care for him.

However the fact remains my grandmother is 89 yrs old. My Uncle was recently hospitalized due to an acute psychosis. We are now in the process of actually getting him therapy, hooking him up with a day program, and doctos who can help. His medication has been adjusted for the first time in god knows how long... but this is sooooo hard for my Uncle. This is a process which should have been started when Uncle was still a teenager. He is 56 and had never been away from my grandmother for a single day.Psychiatric care was sporadic at best, and this is someone who should have had regular monitoring. The transition has been tough to say the least. It would have been so much better for my Uncle if this had happened WAY earlier and not just sudden changes when my gramma is sickly.

We are currently trying to get him adjusted to going to therapy and socializing a bit with other people. He actually really enjoys it! He looks forward to getting picked up for his Day Program each day. Though my gramma is upset that he has people outside of her.

 

[dzorn]

I totally get it. We had our health too, about 15 years ago. Things change as we age, often through no fault of our own. Don't count on living forever. I understand the difficulty naming a guardian, too. Nobody will ever be as good as a parent, ya know? When we were going through this process someone said to me, "Who would you want called if you suddenly died and the choice was your GUARDIAN or FOSTER CARE?" Holy cow! That put in in a whole new light. The guardian we ultimately chose is not the warm, fuzzy person that I am but she will be diligent about his care and I have no doubt that Christian will always receive the attention he deserves.



This is great advice. We made our wills about 7 years ago, about the time that DH first got real sick. My father died intestate(without a valid will) and it was a mess. It really opened my eyes to the REAL MESS we'd have if both of us died without establishing guardians, and such.

For our situation, we decided to have separate guardians for our chidren. Christian is such a lot of work that I really felt it would be unfair to expect someone to take on our other kids plus him. Now that DD17 is almost an adult and DS23 has his own place, it's not as big an issue. However, we still have a guardian for Christian. We do not expect this guardian to be able to physically take care of him and we have talked with her about placement(*assuming he's not already placed) She will have the power to manage his finances too.

The elder law attorney that we used helped us set up a Special Needs Trust for him and it will be fully funded at our death. We have changed our beneficiaries on our life insurance to "Special Needs Trust Fund for Christian___". The other kids will get smaller amounts, plus the house. We've tried to explain our decisions to the kids, but I'm not sure they really understand it. I don't want them to think we loved them less. In fact, because we love them so much we don't want to leave them financially or physically responsible for Christian. Since they wll have he ability to make their way in the world and he will not, we want to make sure that it doesn't fall to his sister and brother to pay his way.

We have a special needs DD with a special needs trust for our DD it is so important that it is funded.

And speaking as a sibling of a sister with special needs. My sister will get 50% my parents estate and I know that they love me just as much as my sister and other siblings. The rest of us get 10% each. All of us would rather have the piece of mind knowing our sibling is taken care of.



Everyone was giving you so I thought you could use some flowers to go with it.

I know it is not an easy decision. I hope you get the rest you all need and your son transitions to his new placement with ease.

Denise in MI

 

[minkydog]

First off my heart just aches for you. I can't even imagine making such a decision. That said you have to think of your son's safety first. One thing I always go back to in situations like this or placing a parent in a nursing home is what would you do in the case of a fire? Could everyone get out safely?

Actually, I have thought of this often. The answer is, with great difficulty, if at all. This realization came to me this spring,in fact. We were having tornadoes and the sirens were going off. We have a safe room in the basement that we go to. But when I ran into Christian's room, I realized that there was NO WAY I could get him safely & quickly down 2 flights of stairs in the middle of the night. So I covered us both with blankets and I sat beside him, covering his body with my own and praying that a tree didn't land on the house. God help us if we ever have to evacuate from a fire. We could never get him out the window.

I wanted to second ARMINNIE's post since my family is going through a similar situation. My grandparents (my mom's parents) had a disabled son that they took care of until the day they had to be placed in a nursing home. My grandmother was extremely adamant about not getting any kind of social care for him, I don't know if she thought she was doing right by him, but it ended up that wasn't the smartest thing to do.

As soon as MY parents became empty nesters and bought a new place to enjoy their time alone, my mom and dad had to take in a 56 year old child, basically (he is higher functioning than most, but he isn't of sound mind and can and has caused some serious problems). They have their good days and their bad days of course, but I just don't think it's fair that this was put on my mom just because my grandmother wouldn't accept help when their son was younger.

He is currently on a waiting list that is like 12 years long just for respite care and assisted living care. The only other option really would be to put him in a nursing home (where my parents live there are no homes for disabled people, they have to go to "nursing homes" where they are pretty much mistreated as we are seeing with my grandparents). My parents have decided they are not going to do that and have accepted that my uncle is just going to live with them until they physically cannot take care of him anymore.

Unfortunately, this is way too common. We have been on the waiting list since Christian was 7 years old. That's 8 years now. We have been told that he could be placed quickly if we were to put him somewhere in South Georgia--5 hours away. Um,no. I mean, yes, we need the help but I'm not moving this non-verbal man-child that far away from me unless we have a real emergency, like one of us dies or something. We'll just have to suck it up awhile longer, if we have to.

I really appreciate all the encouragement and advice I've received. I especially appreciate that you didn't let this thread degenerate into something hateful. You know how controversial the DIS can be, sometimes. I was worried about being flamed, but it has been really wonderful to know that I have the support of the DIS community.

 

[SandrA9810]

My mom didn't have any plans for my brother. When he was taken away, he was "lost" in the system for about a year. She seriously did not know where he was or what home he was in. She kept getting calls that he was in the hospital sick with something. Eventually she contacted a caregiver that took care of him on a daily basis before all this happened. She managed to get him into her private home.
My mom can visit and stay over as long as she likes (since she's two hours away). I wish he was closer to her, and she spent more time with him. But the time was coming, and she did nothing to prepare for it. I guess she never thought she'd get old, or fall and break her hip, or not be able to take care of him, maybe she though she'd out live him. Who knows. But thankfully he stayed on the smaller side, only about 4ft tall, and even though he was strong he still did as my mom asked of him. And he could crawl as fast as you walking.
When he was younger, and in a group home. We could visit as often as we'd like, and we could bring him home for visits. Maybe something like that?? Give Christian a transition, starting on weekends, then 3-4 days, until he's ok with being there all the time.

One thing you'll enjoy, is you can leave the "daily care" to the aids of the home and just enjoy Christian's company. And don't ever feel like you're not making the right choice.

 

[terri01p]

 

[Nancyg56]

Minkydog- I have been "listening" to you for several years now and have felt as though you were a friend and neighbor, just down the street. Sometimes you have made me laugh and other times I have cried as you shared your lives with all of us. I appreciated your approach to every adventure you have had with Christian, realizing that you were as open and honest with us as anyone could possibly be, even knowing that some of your posts could be misconstrued by anyone who has not been part of your DIS family. I believe that your trust that we would not "flame" you for sharing your thoughts has been so helpful to anyone else who is living with a beloved child who is no longer a baby and whose needs are quickly outgrowing a Mother's strength.

Please know that your decision to help find a loving and safe home for Christian is one of the most unselfish decisions a parent can make. I understand that you already know this and have been preparing yourself for the time when you needed to entrust the daily care of your beloved son to another, but I just needed to add my support to those DIS friends who are also here to lend a shoulder and a good listening ear. Sending you .