8

THE FUTURE

“How do I know how much I am supposed to give? I really wish I knew.”

—ELIZA

AS SIBLINGS MOVE INTO ADULTHOOD, new issues emerge. They might ask questions such as: What will happen when my parents die? Will I need to care for my brother or sister in my own home? Will he live in a group home? Who will manage her finances and medical needs? Will he be able to be employed? Will I find a future spouse who will accept my brother or sister? Do I want children of my own? How will I cope if one of them has special needs?

LIFE CHOICES

Regardless of a sibling’s emotional well-being, there are issues that affect all siblings and their choices about the future. Josie, in her early twenties, sums up the concerns of many siblings.

I guess that those from a “normal” (whatever that is!) family would be thinking of their future: Where are they going? Where do they want to be in five, ten, fifteen years? Are they going to have children? How many do they want? Will they get married? Where do they want to live? Far from their parents, near their parents? And the list goes on. And then take sibs like us and on top of all those questions we are also thinking: Where do I want to live, and how can I make sure I make the right decision regarding my brother or sister? Do I want kids? What if my child has a disability? Can I handle that along with taking care of my brother or sister? If I move away from my parents, am I a bad sib because not only am I leaving them, but I am leaving my brother or sister too? Not only am I thinking of my own future, but I am also worried about and planning for my brother’s future.

With all the issues involved, it can be difficult for siblings to make life choices. In addition, they often feel pressure to consider their parents. Sometimes that extends to not making decisions without parental approval. Siblings can grow up lacking confidence about making decisions or going against their parents’ beliefs or wishes.

Even though parents may encourage their children to make decisions themselves, often siblings will continue to be influenced by their childhood. As Nance says:

I can’t help myself. I am always conscious of trying to be the best I can, not only for myself but for the family as well. When you are the sibling of someone with a disability, you basically just can’t help taking everyone else into account, rightly or wrongly, when you are making decisions. Because it’s something you’ve just had to grow up with. It’s a hard habit to break.

I don’t know if other “normal” siblings are affected so strongly by their brother or sister, but I know I can look back on the major decisions of my life and know that my brother is a major factor in almost every one.

Choosing a Career

Many siblings of people with disabilities enter the caring professions. They have been influenced by their experiences in ways that develop their sense of social justice and social equity, resulting in a desire to support disadvantaged groups within the community. They generally understand and appreciate the differences between people, are able to show empathy and compassion, and are drawn to special education, occupational therapy, social work, and similar vocations. Siblings also learn a variety of caregiving skills in early life, and it seems natural to put these to use in a helping profession. A myriad of factors influence career choice, of course, but for siblings the overriding one is often their family situation.

Tara says:

I am a social worker. I was always going to be a social worker, watching out for others, providing a compassionate ear, problem solving difficult situations. I love my job, and my childhood experiences have certainly helped me in the role.

Rachel was drawn to working with people with disabilities.

I became an occupational therapist because of my sisters and growing up with them, and I love my profession.

Some siblings might go into the helping professions in an effort to appease their guilt, which is not unhealthy if siblings are able to consider their own needs as well. Carly acknowledges this influence on her own decision.

As an adult, I have a career, which I began at the age of eighteen, working with people with disabilities. I think part of this career choice was due to guilt over my feelings and thoughts toward my brother; but I enjoy what I do and am successful at it.

Others suggest that siblings have spent much of their time having contact with service providers while growing up and so feel comfortable in that environment. It seems likely, however, that the majority of siblings who move into such service careers do so because they have acquired a sense of social justice as well as a range of appropriate skills.

Where to Live

Siblings can feel torn between being supportive of their family and creating their own life. Many assume that they will care for their brother or sister in their own home and so find it hard to think about moving to an area distant from the family. Even if a brother or sister is in supported accommodation, these siblings experience a lifelong sense of responsibility to provide company or other supports to all the family.

Sometimes this comes easily; other times there can be confusion about choices. Opportunities that arise farther from home can leave siblings grappling with feelings of guilt and a fear that they are being selfish. They might feel conflicting loyalties to friends or a spouse and their original family and resentment that others can fly the coop without these same pressures.

Nance talks about her decision to move away to another state as part of her career development.

Making the decision to move was agonized over, at least partly because it meant I would not be able to keep up my weekly or biweekly visit routine to my brother. It seems silly to have to take that into account when planning your career, but I knew the impact it would have not only on him but on Mom and Dad, and that they would have to take on a greater burden of time with him. I know I have to make decisions for myself, but I can’t help feeling the guilt of leaving. Every time I go home for holidays, I spend about a third of the time either seeing my brother or trying to arrange volunteers to spend time with him, to take up at least part of the role I feel I have abandoned.

I know other “normal” brothers and sisters never need to make those kinds of decisions—in fact it is fine if they go for months without seeing each other—but it is not clear-cut in my case and I do feel guilty.

One sibling, in her early twenties, had moved to another state for a year. She told me it was wonderful to get away from the family for a while, but she added that expressing that thought brought enormous guilt.

Relationships

Many siblings are conscious that they need to choose a partner in life who can accept a brother or sister with special needs. Nance says:

I realize I have to be extremely careful who I choose for a lifelong partner—that he is fully aware of my brother, respectful of him, and gets on well with him. Not only that, he needs to be aware that at some stage, when my parents are no longer here, a degree of responsibility is going to fall on me. These, I realize, are added impediments to the already difficult task of finding the person you want to spend the rest of your life with. But then, I sometimes think that in a strange way, I’m actually lucky to have my brother to help me choose the right person. I wouldn’t want to live with someone who couldn’t get along with my brother and didn’t understand his needs. To me it would show him up to be a selfish kind of person I wouldn’t want to be with anyway.

Siblings talk of judging not only dates but friends, too, on the basis of how they relate to their brother or sister. Nance continues:

All my life I have used my brother as a bit of a litmus test for my friends. The ones who passed into the realm of close friends were always the ones who accepted him well. I realize this was sometimes cruel, especially for people who have never met an intellectually disabled person before and were naturally wary. But the people I really wanted to get to know were those who treated my brother with respect and didn’t talk down to him.

Others feel fearful about taking friends home, often waiting until they know someone well before disclosing information about their family situation. This can stem from fears of being judged badly themselves or even being rejected completely.

Having Children

Decisions about having children can be fraught with difficulty for siblings. Some feel they will be better equipped to handle any difficult situation, even if they were to have a child with a disability themselves. Others are terrified of the prospect. I was thirty-five when I became pregnant with my first child and was full of fear about what might be. Because of that fear and my age, my husband and I decided to have an amniocentesis evaluation, where a sample of amniotic fluid is tested for abnormalities. It provided no real guarantees, as it eliminated only certain problems, and besides, my sister’s disability was not genetically based. However, we certainly felt some reassurance when the test ruled out major genetic problems.

Where a disability is genetically based, siblings can now seek genetic counseling as a way of assessing their own risks. Again, though providing no guarantees, this can be a helpful step in making the decision about having children. A doctor can refer you to the nearest genetic-counseling service.

Marsha, whose sister has cerebral palsy and intellectual disabilities, took quite some time to feel comfortable about starting a family.

Whenever I saw kids or thought of having one, I just cried and cried. The fear of a disabled child was too much to handle. I went into counseling, came to terms with my grief over my sister, and was able to overcome the fear and had two wonderful boys.

Rachel had similar difficulties.

Having kids must be one of the biggest issues for us sibs. From sixteen years of age I started telling myself, “I don’t want kids, I don’t want kids,” because I knew that when I was older I might think I really did want them. I was essentially trying to brainwash myself at a young age. After meeting my husband and knowing he wanted a child, it took me about eight years of counseling and self-discovery before I was ready.

Most people are aware of the chances of “something going wrong,” but siblings have a more acute realization of the risks. They know something went wrong before, and it is easy to believe it will again. Some choose not to have their own children because their fears are too great.

Tara says:

The question of children or not is so big for me that I totally avoid the kinds of relationships where the issue may arise.

Victoria felt that her own problems would have made mothering difficult.

While I would have loved to have children, I realize how many psychological issues I’ve had to deal with, and I am glad I did not burden any children with my emotional scars.

Some siblings don’t want to take on the responsibility of their own child because they know that they will ultimately have responsibility for a brother or sister. Others find that after years of feeling neglect and finally feeling that their life is their own, they don’t want to give up that freedom.

It is clear that there are a range of concerns for siblings as they look toward the future. For many it can seem a heavy burden. And it is easy to feel that no one understands. As Josie says:

No one really tries to understand what it has felt like to be me. They acknowledge that my parents have a lot to think about regarding the future—but I never hear support about what my future will be like when my mom and dad are older. I’m the only “normal” child, and I have a younger brother who is twenty-two but functions at the level of a one-year-old. It would be nice to hear someone say, “Josie, how are you dealing with things? How has your brother affected you?” No one asks that because they assume he has affected me in only positive ways.

He’s made me caring, nonjudgmental, responsible, mature, aware of societal injustices, and empathic. Everyone sees those qualities because they are easy to see, but not many people take the time to look at me and also see the not-so-good traits, like my “good daughter” complex, my insane expectations of myself, my insecurities about the future, my worries about having my own children one day, about how my brother will affect my own family one day, about what happens when my parents need assistance with their daily living—along with my brother—and me being the only other sibling!

MY BROTHER’S KEEPER

“I am the designated person to care for my sisters after my parents are gone! Gasp . . . I am the only one! My mom has extended family I can at least use for support. So I better start talking to them about all this stuff!”

—RACHEL

Most siblings are acutely aware that they will need to take over when their parents are no longer able. For some, that involves caring for a brother or sister in their own home. Where a brother or sister lives in supported accommodation, siblings are often active in providing other support. They may provide social contact, management of finances, and medical care. Siblings often need help to understand issues such as guardianship, as a legal guardian may be required to make decisions for their brother or sister. (See chapter 10.)

Some siblings say they have used marriage, travel, or other commitments as an escape from the pressures they feel as they reach adulthood. The burden can be even greater for siblings who have no able brothers or sisters. They may need to distance themselves for a short period in order to gain some independence. Often they are then ready to face their increased responsibilities.

Other siblings, however, stay away for good. During the writing of this book, at dinner one night I met a man who has a sister with Down’s syndrome. He admitted he has totally distanced himself from his family, as he finds the whole situation too difficult. He initially agreed to an interview with me, but it became clear that he preferred to avoid thinking about it, as it caused him distress. When family members move away like this, other able siblings can be left with the full responsibility, leading to resentment and eventual family breakdown.

Tara struggled for some time with her attempts at independence.

I was twenty-four when I finally left my family. I had moved out some time before but remained a daily caregiver. I had to move to another state to escape and collapse in private. I felt so guilty I had run that I called every day and flew home every couple of months for three years. I am in so much financial debt and am still exhausted.

Missi has a number of fears for the future.

I am the only other child in the family, so that’s kind of a pain. I’ve always wondered if things would be different if I had someone to talk to about the situation. I sometimes wonder what will happen when my parents die. What will happen to my sister? She’s always lived with us at home, and it would be so hard to let her live in a group home but equally hard on me to be her carer, knowing how much work she is.

Julie tends to put off thinking about the future and what it holds.

When it comes to my responsibility when my parents aren’t here, I think I have an “ostrich” attitude. I won’t think about it until it is necessary. Our mother’s anxiety about different problems concerning our sister pulls me and my two brothers together. We talk about it and so we share it, but we’re all hiding it under the carpet at the moment. We’re all busy. I know that being the female, when the time comes, it will be me who does more of the everyday things. I’ll need to clean her house, and she will need more help as her mental faculties diminish even further, as they inevitably will with age.

Eliza also grapples with how much she should give of herself.

I work hard to believe that my life is my own and not feel guilty that I have my own time, money, and pleasures, even though my mentally retarded brother cannot have them. How do I know how much I am supposed to give? I really wish I knew.

Josie, whose brother has multiple disabilities and requires considerable day-to-day care, talks of a conflict of loyalty.

There is one part of me that feels like no one would take care of him with the kind of love and patience that I would, and then there is a part of me that feels like I also need to take care of myself and my future family, and I just don’t know if a husband, children, and brother all in my home would be too much for me to handle. I go back and forth on this issue, never sure how to feel or what to do . . . always happy that I haven’t had to make the decision yet. My parents had over thirty years of their lives without the responsibility of him, and I just have to remind myself that I have a right to that freedom too. But the guilt gets me. If I decide that I cannot take care of him every day for the rest of my life, am I a terrible, selfish sister? I do know that whatever happens, I will always make sure that my brother and I live a very short distance from each other.

Siblings are more likely to remain involved in the life of a brother or sister with special needs if they have received support themselves. It also helps if there has been some preparation for the future. Providing support and planning for the future are discussed more fully in the next section of the book.

SUMMARY

Siblings face a range of life choices as they move into adulthood, which include the following questions:

STRATEGIES TO DEAL WITH THESE ISSUES