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Sibling Caregivers Find Responsibilities A Struggle


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About half of adult siblings of those with developmental disabilities either are or plan to be the primary caregiver for their brother or sister, but many are unprepared for the responsibility, a new survey finds.

The national poll released Wednesday indicates that among adult siblings of those with a disability, 23 percent are currently serving as primary caregivers while 1 in 3 expect to take on that role in the future. And many are finding the experience to be daunting, fraught with emotional and financial challenges and little support.

The survey conducted by the market research firm Ipsos on behalf of Easter Seals solicited feedback from 351 brothers and sisters of people with developmental disabilities from across the country. A control group of nearly 1,400 adults with typically developing siblings was also polled.

Overall, in cases where a disability was present, siblings were twice as likely to report being involved in their brother or sister’s day-to-day life, whether or not they currently served as the primary caregiver, the poll found.

For those who are the primary caregiver for their brother or sister, three-quarters said the role is a full-time job. Meanwhile, 30 percent said they don’t get emotional, physical or financial help from others.

The caregiving responsibility brings increased stress and puts strains on family life, the survey found. And, about 1 in 5 siblings said that dealing with a brother or sister with a disability has negatively impacted their relationships with other family members or their quality of life.

Despite the hurdles, however, adult siblings also said in many cases that their relationship with their brother or sister is a strong and rewarding one. More than half said that having a sibling with a disability had a positive impact on their quality of life. And, about 80 percent reported that they are close with their sibling and that the bond enhances their life, a figure that was much lower for adults with typically developing siblings.

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Comments (16 Responses)

  1. Sharon says:

    Fact! Wouldn’t change my role as my brother’s caregiver for anything, but it is exhausting and thankless, with little to no assistance or support. It can really be draining. I’m so glad they did this study, hope this is the first step into more resources for sibling caretakers!

  2. DJ says:

    Best thing for parents of children with disabilities to do is to put a special needs trust into place for the child with disabilities so that the adult siblings who may some day end of caring for their sister or brother with disabilities will have addtional funds with which to support the sibling. You don’t have to have alot of money to set up a special needs trust, a life insurance policy can be taken out for the child and upon your death the money can go to the special needs trust for the child which does not affect their disability income benefits. You would make that child’s siblings the trustees of it so they can use the funds to care for their sibling.

  3. Lisa in Virginia says:

    Interesting article, however I didn’t see any resources or helps for these individuals to navigate their way through being a sibling caregiver to a disabled brother or sister. Just stating the percentages and problems is only a start, and what about the parents of these developmentally disabled adults and the toll caring for them has taken on their lives, marriages, relationships, health- physically, mentally, emotionally and spiritually? The system is so flawed. I have a son who is profoundly disabled, cognitively, with developmental disabilities, autism, and daily multiple seizures and other medical concerns. The idea of having these individuals cared for in their homes by their parents who themselves are aging, may be good in theory, but the services are so limited, it is a joke and facilities available to house or care for them are non-existent, unless you can afford private care facilities and be fortunate enough to find one or one with openings and without a tremendous waiting list. The toll on the parents for this type of full time, constant supervision, and vigilance required every minute of every single day and night is unimaginable, indescribable and frankly dangerous. It is a crime that the pendulum swung to thinking that disabled individuals would be better served in their own home, by their family, mostly their parents. Anyone who knows this for themselves, understands the extreme strain and drain that comes with this responsibility and changes your life forever. It is a dis-service to the disabled individual and very much a dis-service to the parents of these affected adults. There has to be something done to bring back facilities to care for and at a minimum provide respite care for the exhausted caregivers- be it parents or siblings. They need to be safe and effective, clean and maintained and staffed by those who are qualified to do such demanding work. Just because some institutions were found to be in violation or lacking in the proper care, does not mean they should be shut down, but rather fixed and improved upon and as new and different ways are discovered, implemented. Every day that goes by where the overworked parents have little to no relief is a day with many lives in jeopardy and that is unacceptable.

  4. Glen S says:

    Thank you DJ for your words of wisdom! Unfortunately, many will find the legal fees for setting up such a trust cost prohibitive, and this is before looking for funding sources for the trust itself. Others will neglect this relatively simple idea as they want to force society to continue to dole out services for which budgets around the nation have no money.

    Lisa in Virgina: As a SAHD for six years with a son with multiple severe disabilities, I empathize with your situation; but ardently disagree with your conclusions. Yes, parents of children with severe disabilities are tired and distraught; and I could give you a really spiritual answer. But government is not your answer. The government will always give you far less than you need and will require far more to demonstrate the need than is necessary. Unless of course you can afford the lawyer then you will be able to get far more than you need and deprive others of what they need.

    There are many charities (including some churches) which are itching to help families dealing with disabilities. Currently, a large amount of good will continues to exist for families dealing with and individuals with disabilities. (This is in direct contradiction to what others on this forum would have you believe.)

    The government is not the only provider in town, and should not be your first source of relief.

  5. cbtambien says:

    Most respondents reported a positive impact on the quality of life, with 80% reporting that the bond enhances their life. So why does the headline emphasize the struggle? Yes, anyone who’s supporting a person with developmental disabilities should get more help than is generally available. But let’s not overlook the fact that most people in this position, for all their needs, enjoy and celebrate their relationships! Disability Scoop, we depend on you — please be more careful about what your headlines project, especially about the value of people with disabilities in our everyday lives.

  6. robyn says:

    I would be so happy if my adult son with special needs had siblings. I don’t know what will happen to him when something happens to me. As a single parent with no financial resources to set up a trust, and no family that can take him if something happens to me, I live each day trusting that God will have a plan. I’m sorry there aren’t supports for the siblings, but there are very few supports for parents that are beginning to age, either. My support is in my faith.

  7. Malinda says:

    I am the sibling of a sister who has Down’s Syndrome. We are 16 months apart in age. I have been her care-giver for the past 9 years. I have also recently had to take on the care-giving of my 91 year old mother. I agree with Lisa in Virginia. I don’t see why facilities are not covered by the Waiver. I am being forced to send my sister to “live in the community” because she has recently been “granted” a Medicaid Waiver (NOW/COMP) in the state of Georgia when she would be better served and taken care of in a special residential facility called Annandale. The waiver will not pay for the services at Annandale. The state of Georgia basically forces siblings and parents to turn over everything to these group-homes and hired caregivers who are nothing more than contractors for the State. It is wrong on so many levels. I want to take take care of my sister and I want to take care of my mother, and I have to work full-time to take care of myself, and the State interferes with that by issuing ridiculous mandates because “they” feel they know more than we, the family members and caregivers. How can we change this practice?

  8. Tom F says:

    I have a 14 year old son with severe Cerebral Palsy. He is non-verbal and non-ambulatory. He does have 3 siblings. My wife and I are blessed enough to have a trust in place for our son. He also receives nursing care paid for by Medicaid. We are seriously involved in our son’s care and in our local church. Without all of these pieces in place, I doubt we would be able to care for him at home. That said, I disagree with “Lisa in Virginia”. Our home care is in no way dangerous for our son or for us. I’ve given this a lot of thought and prayer as I’m sure most of us care givers do. We realize we are getting older and he is getting bigger, heavier, and just generally harder to manage as he enters puberty and eventually manhood. I still believe the best quality of life for my son is to keep him at home. We have discussed this at length with his siblings too. They are fully aware that they will have the choice to decide whether to keep him at home or place him in a home of some sort after his mother and I die or are unable to care for him. I have to accept that someday he may be best served by being in an assisted living home, but for this stage in his life, he is staying home. As for church, I mentioned that on purpose too. My son attends church with us and he knows many people there. More importantly, they know him and our family. Should some accident happen to me and my wife (or even, God forbid, the whole family), we have many good friends that would help in any way possible to give my son the care he needs.

    I think it’s critically important to have as many social connections for our disabled children as possible. The more the better and from many different sources. That will help to ensure that they don’t fall through the cracks. Like “Glen S” said, we can’t trust the government to take care of our loved ones. Especially today with our national economy crumbling. The help is great, but no one knows how long it will last or if it may be reduced. Don’t rely on the State or Federal government to be your sole source if you have any choice in the matter.

  9. Heidi Jackman says:

    As my sister’s care giver I could not do this without the physical and emotional support from my husband. The three of us live together and we coordinate supports via NH area agency and home health. The stress has NEVER been about my sister, but about coordinating supports to ensure my sister’s needs are met.

  10. Suesan says:

    My sister-in-law is 38 and has Downs. She lives with our family for 8 months of the year and her other brother’s family the other months. We live in different states and the transistion is often hard for my SIL, but the rewards to both families is worth it, as neither of is capable of carrying the burden of her care year round. That said, the parents in this case did not do enough to prepare for their death. Yes, they had a trust set up and that helped, but getting the funds in the trust is still an ongoing process a year-and-a-half after my MIL’s death.
    In our case, Katie (my SIL) was already living with siblings about a year prior to her mom’s passing so that transition was already made. During that year, though, getting her set up on programs, having paperwork that shows her prognosis prior to age 18 (like Downs could be contagious!), having all necessary documentation (immunization, prior medical records and names of doctors, SS card, birth certificate, State issued ID card, insurance information, list of medications) to get her enrolled in programs is so vital to the sibling caregiver as they may not know this information. Parents can ease the way for the siblings but also be willing to understand that plans they make now may not work down the road as the parent ages.

    For example, it was always my in-laws plan that Katie live with her older sister. The brothers were told this during their whole childhood. Yet, as the sister married and had a disabled child of her own, this plan never changed. No one questioned whether or not the sister would be able to take on the additional burden of her sister. Since the sister was involved to some extent with things, they left it to her to decide. However, only when the sister was burned out to the point of utter exhaustion by caring for her aging mother and two disabled people did she finally break down and realize this plan was not going to work. In ended up with an abrupt dumping of Katie onto her brother’s family. The sister did not have all the documentation that was needed to assist the brother in his care role and it was a nightmare for my other SIL to gather all that information to get Katie the assistance she needed in a new state.

    Parents: Be thoughtful of the future and PREPARE all siblings for the role of caregiver. You don’t know what the future will hold and the more you can prepare and plan, the better the transition will be when the time comes.

  11. MsKim says:

    I am an adult sibling of a sister with Down Syndrome. I appreciate this article referring to the struggle because there are few safe places for those of us that DON’T feel rewarded to express our frustrations. I love my sister, and I promised both my patents on their death beds that I would take care of her, and I am fully committed to her care and quality of life. However, the quality of my own is severely hampered with the lack of support and vision for the future. My children are nearly grown and are leaving the nest, but sister will always be dependent. As a single person I find it difficult to even date because of the lack of assistance, not to mention the fear of bringing someone into a very demanding situation. I love my sister dearly, and do any and everything for her, however I feel it’s necessary to speak for those who deeply struggle with their obligations and are looking for balance for themselves.

  12. Mary Massey says:

    I am fifty-two,with PTSD,Short term memory loss and anxiety disorders. I am being made to give care to another,when I sometimes cannot take care of myself It is only three half days per week and I am responsible for all doctor visits.And her basic hygiene. And she is not the nicest person in the world.Their is alot more to it,but I am having a really hard time sibling understanding I can’t do this much longer

  13. Renee says:

    My sister is currently in a nursing home though I’d love to find some time of supportive or assisted living facility. Unfortunately those are almost exclusively reserved for seniors and my sister is still 13 years from being eligible. I feel obligated to do what I can but not to sacrifice my own life. Too often the disabled are painted as joyful “children” with permanent smiles and that is certainly not the case. All involved must have realistic expectations – with realistic caregiving options available.

  14. Joann says:

    I sisters caregiver she’s 33 she’s blind an diabetic has alot of health issues. She hasn’t always been this way I think within like 2 or 3 yrs she got like this went blind an has had a lot of issues. We’ll I can’t get s job cause I watch her plus she lives with me my husband an 3 daughters a 10,2, an a almost 1 yr old. It’s very hard an stressful. We just moved into a bigger home an have alot more bills. I heard that in ok that dnt not pay a family member to be a car egiver I wanna know why? Or wat can I do to get payd some way to help pay our bills. They won’t send a nurse to help cause I do everything for her. So is there anything we can look into to help us. I’d really appreciate your help with this my sister doesn’t want to go to a nursing home cause she says it’s lonely an she gets depressed. Help me please figure something out.

  15. louise neves says:

    I have had my sister for 15 years now since my moms passing. I have just be en given the ultimatum choice between my girlfriend of five years or my sister. Absolutely not I say…now we need a place to go. What are my options? I’m a little scared.

  16. struggling says:

    It’s an absolute nightmare to care for the disabled. I’m sick of people saying they are a delight, when the reality is endless tantrums and a life of misery.

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