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I was reading a thread under caregivers where elderly parents had cared for a disabled child (adult) in their home his entire life. Now that the parents are getting too old to do that they had planned that the siblings would continue, as they did, providing care in their homes for their disabled adult sibling (rather than in a group house or assisted living facility).
Parents in this section are probably just beginning their caregiving journey. I have wanted to share this sad story for some time.
This is not meant to make any of you readers, feel depressed, but to just think about all of the alternatives. Sometimes parents can be so "single minded" in their determination to provide for a handicapped child that it sometimes results in the detriment of their other children.
I knew that one of my co-workers needed to leave for home right after work to care for a handicapped sibling. My coworker was very nice, hardworking but rather quiet and shared few details about her home life. One time during a wedding shower she shared that she had a steady boyfriend in college but her parents refused to allow her to get marry. Everyone was surprised and shocked and asked "Why?"
She reluctantly explained that she was born a twin and was born first. There were complications and her sister was born second and was handicapped due to brain damage/lack of oxygen during birth. My coworker explained that her parents blamed her for her sibling's brain damage and told her that she could never marry as it was her responsibility to care for her sister when she was older (and after the parents were dead.)
Of course, I probably do not know all of the details or the full circumstances, but her story appears to be accurate. My coworker retired a few years ago and we talked about the things that we had been doing recently. My friend said that she and her sibling went to the park last month for an outing but basically she just spent time at home cooking, cleaning, and caring for her sister.
Well, most retirees spend time traveling or vacationing. Maybe this is how my coworker truly wants to spend her final years but I wonder if it was just because she was "brainwashed" her whole life that she was "destined" to do it because she was the twin born first & healthy.
I have five beautiful Daughters and count my lucky stars that none of them were born handicapped or disabled. However,if one of them had been,I NEVER would have made any of the siblings feel;that after my death,they were responsible for tending to the one who was handicapped or disabled. In my opinion,I feel it should be left up to the siblings to decide what path to take with their brother or sister who is unable to tend to them self. I think it is a selfish act for a parent to do such a thing. Your coworker,for sure,has a heart of gold to give up her own happiness to tend to her sister. What a sad story!
I have a close childhood friend, whose 4th child is severely handicapped. This girl is now 22, and has three older siblings. One of those siblings opted out of a family trip to Europe at the age of 12, in order to stay behind with her sister and the hired(but well known to the family) caregivers. She pointed out that her sister would not be able to communicate should she be mistreated and therefore wanted to stay behind as an extra set of eyes.
Yes, this is a family of considerably means, which may be why this handicapped child is still alive despite numerous medical emergencies. The sister is getting married next month, and will have her sister "serving" as MOH. I am in awe of the young woman who is not only able, but completely willing to see to her sister's needs should it become necessary.
Every so often, you hear of someone who just blows you away with their selfless acts. They do exist.
We have a son with DS who is 26 years old so that is why I decided to read this. This is not about parents planning for an adult child with a disability, this is is a story about a family that needed counseling not to mention that the adult daughter desperately needed therapy. Services are available through every state and that the daughter, without the disability although I consider much more disabled than the other sister, chose not to get help and I cannot believe that no one encouraged her to seek assistance. Our older son will take guardianship of our younger son. We are working on getting residential services. We were on the waiting list for 5 years and then the services in our county were unacceptable so if you don't take them, you go to the bottom of the list again. You can only get services in a crisis situation so a lot of people make up lies and move ahead of the line, we do not lie but this makes those that are honest wait longer.
There is a lot of abuse, neglect and exploitation of people with disabilities. And, some people might be surprised to learn that siblings actually do want to care for their siblings with disabilities. Many states, if not all, will pay a relative for a certain number of pre-determined hours if they are caring for a family member with a disability for the supportive homecare. Many are then able to stay at home or work part-time depending on whether the person with a disability attends a day program. Some states offer respite care also, ours not being one of them.
We can never know the real reasons that people make the choices that they do but they do make the choice.
What I am writing pertains to MY family and our thoughts on our situation. Everyone must do what works best for their families.
My children are twins and one has a disability (dyspraxia) which manifests itself in speech & severe motor delays with yet unknown but probable learning disabilities (based on what we've seen in their 5 yrs of life) as well as social skills 2-3 yrs behind her peers. It is unlikely that she will ever be able to drive a car or take on certain tasks we more or less take for granted. She is a beautiful, intelligent girl but her speech and delayed skills have already led to her being bullied in pre-school and play groups. Her twin, on the other hand - everything comes easy to him.
We are not a family of wealthy means so it's rather nerve-wracking to think about DD's future if she is unable to sufficiently provide for herself. DS is already very protective and nurturing of her. Since age 3, he has - on his own - helped her with her numbers and letters. He has never called her slow (unlike the neighbor kids) nor does he ridicule her when she can't perform simple tasks without creating some kind of mess. He understands to a certain degree that she has limitations but at the same time, DD is also responsible for her own actions. We don't cut her any slack where we know she has the ability to do better. Neither does her brother cut her any slack. They fight like cats & dogs but their is an unmistakable bond is beautiful and amazing.
Is it fair to expect that he take care of her in the future or at least be there for her? Maybe but I don't really know what others expect should be done. Leave her to the care of strangers so her brother has no responsibility for her? In our family, many of us have made sacrifices for other family members out of obligation AND love. I guess I don't really see the difference or the wrong here especially when it comes to someone who is disabled through no fault of his/her own and expecting a sibling to look out for his/her best interests. If we had more children, I would expect ALL of the siblings to do their fair share in helping with their disabled sister.
If you do not have a disabled child, you will never really know or understand how we worry about the future happiness and what is best for our healthy child as it relates to our disabled child.
I strongly believe that parents of a disabled child have an obligation to ALL their children to have a discussion about care-taker responsibilities once the parents are deceased. These responsibilities, IMO, have to be laid out in advance so that there are no misunderstandings. We write Wills stipulating who gets what money and furniture. We have to do the same for something even more important - our healthy children as they relate to our disabled children!
My daughter is not disabled to the point where she wouldn't understand that no one wants responsibility for her. That would absolutely demoralize and devastate her.
I agree that people would be surprised by how many siblings DO want to take care of their disabled siblings. I belong to a group in our community of special needs kids/families. I can't think of one family where the disabled siblings would not have at least one healthy sibling willingly taking on the responsibility of their brother/sister with special needs.
Last edited by Sampaguita; 07-08-2013 at 12:04 AM..
I can speak to my father's situation. There are 7 siblings and the middle child is severely disabled. While he lives in a group home (and is now in his late 60s) my aunt is his legal representative and all of the siblings visit and spend time with him. While he has never lived with any of the siblings he continues to have a relationship with them.
My youngest had Down Syndrome. His sisters range in age from 11-26. We joke that they will have to fight the custody battle when we are old or gone. All have said he can live with them, but we have no set plans in place as of yet. He is already pretty self-sufficient and who knows,maybe will be able to be on his own someday, as some people with DS are, but we are hoping our girls keep their word and take care of their little brother.
I had a co-worker many years ago whose youngest sister was severly delayed. When her mom passed, the sister continued to live with Dad (was actually step-dad) and my co-worker said they had it worked out that when he was no longer able to care for her, she would move in with them-there were 4 siblings, but she agreed to be the caregiver.
SOme families do not have someone willing to take on that responsibility, so they do need to make other plans. I would feel terrible if my son had to live in any type of institution. Just last week it was posted that an adult with severe autism was left in the care van for over 6 hours-forgotten about. A current co-worker's mom was recently moved to a nursing home and they are so short staffed that she pays an aid daily to go in and feed her mom her meals because her mom wont get fed otherwise. What about people that can't afford to pay someone to come in daily?? There are not enough support services out there for people with disabilities as they age.
Sometimes obligations come up for siblings that they don't expect. I would want to discuss a backup plan. Siblings will have lives of their own and families to care for and some people with DD become more difficult to manage as they age and develop additional issues.
I won't pressure my younger daughter to be her sisters caregiver when I leave this world. I could die a happy man to hear her make the choice to care for her sister. My younger one is only 10 but she wants to become a doctor so she can find a cure for her sister.
Our oldest child will be conservator after our death and it is our goal to have her two Autistic and very high functioning siblings living as independently as possible once they reach adulthood. They improve as they mature and continue to surprise us so we aren't sure yet what that will look like? Could mean in their own place, could mean in a supported group home? Whatever the final decisions are our eldest plans to be very involved.
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