Thanks to everyone who responded to my last post. Your comments were really helpful! Based on what I learned, I’ve planned a series of posts geared toward siblings who care for brothers or sisters with mental illness. I’m calling it the Sib Series but I think there is something here for all of you.
When I decided to step into the role of caregiver for my sister, it was unquestionably my choice. I had tried to hold Jerri’s hand, long distance, through a number of crises, including more than one hospitalization to stabilize her meds. The last one had involved convincing her to check herself in, enlisting one of her friends to drive her to the facility, finding a kennel that would board Max with an open-ended reservation, tracking down Max’s vaccination records, and enlisting my father to transport him to the kennel. It was exhausting, impractical, and I felt like I was just sticking my finger in the dike.
I realized over a period of about 2 years that Jerri’s local mental health system was failing her. That she had virtually no local support network and it was extremely unlikely she could get better on her own. I’m a competent person and because I work in the pharmaceutical industry, I understand healthcare better than most. The mental health system where I live, while imperfect, is still light years ahead of the one she was dealing with and I have the drive and initiative to navigate it. Jerri needed help and I believed I could help her, but only if I committed fully to the task. So I made the choice and moved her here.
In essence I asked myself, “Should you be your sister’s keeper?” and I responded, “Yeah, I think I should.”
Many siblings in similar situations never actually consider this question. Why? Because they don’t realize or acknowledge there is, in fact, a choice. If you think caregiving for a sibling with mental illness is in your future, if your parents plan to pass the torch to you, or if you’ve already assumed that role, an important question to ask yourself is:
“What is my motivation for caregiving?”
At Sibnet on Facebook, someone recently asked, “How did you get to be the primary caregiver for your sib in your family?” (My paraphrase.) If you don’t know about Sibnet, it’s an online support and information community for adults with siblings who have special health, developmental or emotional needs such as serious mental illness, autism, cerebral palsy, and Down’s syndrome. The responses fell into the following categories:
- “I’m the only sibling”
- “I’m the eldest/nearest in age/closest relationally to the sibling”
- “I’m the only female”
- “I’m the one who lives the closest”
- “I’m in the best financial position”
- “I’m the responsible one” or “I’ve always been the co-parent”
- “My other siblings didn’t want the responsibility” or “I’m the only one in the family who cares”
- “My parents expected me to do it” or “There has always been an understanding that it would be me”
Reading the responses, it’s clear that many siblings didn’t choose the role so much as get nominated for it. The lot fell to them for a variety of reasons including geographic proximity, financial stability, compassion for the special needs sib, and position within the family. While all of these are valid factors to consider, only compassion and depth of relationship with the sib are motivators that will sustain you through the really hard parts of caregiving.
Compassion was a key driver for me. I’ve mentioned before that Jerri and I were estranged for well over a decade when we became involved in each others lives again. We were also not close as children. Jerri hated me and I was, at best, ambivalent toward her – so there really was no emotional attachment to speak of. Despite that, it was impossible for me to witness her circumstances and not feel compassion. She was alone, lonely, being preyed on by neighbors and so-called friends, in and out of sanity, delusional, and often paranoid. This is someone I’d shared my childhood with. If our situations had been reversed, I’d have wanted her to intervene for me.
On Sibnet, several responders indicated they’d always known they would be their sibling’s caregiver. Their parents expected them to do it and had prepared them for the responsibility most of their lives. The desire to please your parents is not a sustainable motivator when it comes to caring for a sibling with mental illness. Trust me on this. I’m the Trophydaughter, Queen of the Parent-Pleasers. In this case, “desire to please your parents” is a breeding ground for resentment that will set you against your other family members, damage the psyche of your special needs sibling, and destroy all your personal dreams. That is, if you’re human. There aren’t a lot of people who will tell you this, and in particular, your family members. Fortunately, you have me 🙂
The second question to ask yourself is:
“Am I really the person best-equipped for my sibling’s caregiving?”
Let’s face it. Even the best parents planning for the future of a child with mental illness ask the wrong question. They ask, “What’s going to happen to Sissy?” They are mostly focused on the basics – they want to know Sissy isn’t going to wind up homeless or incarcerated or worse, that she will take her meds, get proper nutrition, and not get into trouble. It makes sense, from their perspective, that one of their other children step in. But these are just the basics.
The goals of caring for a sibling with mental illness go far beyond that. The right question to ask is “What is the best possible life scenario for Sissy?” The answer to that is always recovery and independence. In the case of mental illness, the caregiver’s goal is to help the family member achieve the highest level of functioning possible, despite the self-defeating decisions, choices, and behaviors that result from the family member’s disorder.
You have to be a friend, You have to be a coach. You have to be a care coordinator, a researcher of community services, a health and social system navigator. You need the entrepreneurial spirit required to explore, learn, fail, and try again. You have to be an advocate. You will encounter stigma and prejudice even within the medical community and you’ll have to demand equal treatment and quality of care. You may have to be obnoxiously persistent. This is not a job for the meek or faint-hearted. You may need to overcome your own deeply ingrained perceptions of mental illness or political opinions about those who utilize social services. This is the job description. So be honest with yourself. Are you the best person for the job? Shouldn’t your sibling have the best?
“But Trophydaughter, you don’t get it. There is no one else – I have to do it. I’m the only sibling.” Fair enough. This leads to my third question.
“What would happen if my sibling with mental illness was an only child?”
If your sibling lives with your parents, this is actually a great question to ask them. And it’s a valid one. There is no guarantee you or your other “normal” siblings will outlive them.
Your parent’s may picture a future for your special needs sibling where she moves in with you and you care for her like a mother. But what if you weren’t in the picture? Would they ask another relative or family friend to provide care? Would they establish a Special Needs Trust to provide ongoing financial support? Would they be more proactive about helping your sibling obtain disability and Medicare benefits? You see, the truth is, you are not the only option for your sibling’s care. You are just the most convenient.
Many parents subconsciously foster their adult child’s dependence on them. There are a multitude of reasons why. They may feel guilty or somehow responsible for the mental illness. They may feel protective or embarrassed. They may truly believe the adult child can’t function independently. They may not want to live alone themselves and enjoy the sibling’s company.
I believe our ability to take care of ourselves is core to our emotional well-being. There have been times on this journey when Jerri really wanted to be dependent. She would have moved in with me in a skinny minute. But I never offered because it’s not best for her or for me. Now, she would tell you she doesn’t want to live with anyone. She values her freedom. She wants to live her own life. It’s a gift.
Which brings me to the last question:
“What am I UNWILLING to forfeit to care for my sibling?”
This is a boundary setting question. I, for example, am not willing to forfeit my marriage. That comes first for me. Stan and I discuss potential changes in Jerri’s care that impact us and we make decisions together. Forcing him to be involved in ways he doesn’t want to or making decisions independently that will affect him would damage our marriage.
There are siblings at Sibnet who are contemplating dropping out of college to help care for their sib. And parents who are encouraging them to do so. This is wrong on so many levels. How can you take care of a sibling with mental illness if can’t even take care of yourself? Unless Mom and Dad are leaving you a huge inheritance and you plan to live with them until they are gone, you need a job, a good job, so DON’T give up college.
Other siblings decide not to have children because it just seems too hard to raise a family AND care for their brother or sibling. Don’t give up your dreams. If you want a family, have one, and put that desire first.
You CAN be a caregiver without giving up your life. There are ways to be involved in your sibling’s care to a more manageable degree – without being the live-in, full-time, primary caregiver. You don’t have to go it alone. There are group homes and assisted living. There are social supports like Assertive Community Treatment Teams.
As a last resort and depending on your situation, if your sibling is truly unable to take care of herself or is a danger to herself or others, you can pursue a competency hearing. This can be extremely traumatic for everyone involved. Your sibling will likely feel betrayed. No one wants to be stripped of their independence. But if the court determines your sibling is incompetent and you don’t want guardianship, in many states, a social service agency will assume the role. To me this is a drastic measure but there are situations when it needs to be considered. If your sibling is physically abusive, for example.
As a sibling who has already taken the caregiving plunge, you can tell I’ve put some thought into this. Whether or not you choose to care for your adult sibling is exactly that – a CHOICE. Your choice and no one else’s. You choose. No matter what your parents tell you, you are not the only option your sibling has. You may not even be the BEST option your sibling has. Caregiving is not a job anyone should assume lightly.