In fairy tales and made-for-streaming movies, siblings are presented in a, well…less-than-realistic way. Sometimes, you have a brother or sister who is differently-abled. This, of course, shifts your relationship in some ways. For your parents, things can be far more intense. They take on the often grueling work of managing their child’s special needs. As the child ages, those needs evolve. As their parents age, their ability to meet a child’s special needs wanes. This is usually the point where a sibling is asked to step up and fill the void.
By the Numbers…
One in 4 U.S. adults has a disability. Many of them require caretakers. This role is usually filled by their parents — until their parents get too old or pass away. That’s when the responsibility will often become that of a sibling.
A recent survey of people with disabled siblings found that 80 percent of them expected to eventually become the primary caretaker for them. This may be more common than you realize. About 29 percent of the U.S. population — over 65 million people — care for a family member. In many cases, that family member is an adult sister or brother.
If you are the caretaker for an adult sibling, you know this difficult work takes place while the rest of your life continues to make its normal demands. You may be married, have kids of your own, and perhaps your elderly parents are still alive. Adding to that are career obligations and the need for your own self-care. Obviously, this is a demanding and relentless position to be in.
Some of the Challenges a Caregiver Will Face
1. Financial
Remember that 80 percent of people who expect to become primary caretakers mentioned above? Well, that same study showed that only bout one-third of them felt prepared to financially handle that role.
2. Juggling
As touched on earlier, your plate is not just full. It’s overflowing. Things will inevitably fall through the cracks. Sometimes, those things will be the needs of other loved ones and/or your own needs.
3. Emotional Labor
Maybe you’ve become adept at time management and also have the economic side of things under control. You still have to handle the intense emotional workload. Don’t underestimate it.
How to Manage Your Sibling’s Special Needs
1. Learn From Example
If one or both of your parents are still around, pick their brains for input. They’ve made mistakes, learned from them, and adapted their approach. If your parents have died, seek information from other caregivers. Also, get in touch with experts in the fields, e.g. social workers.
2. Start Slowly, If Possible
If you’re fortunate enough to go slowly at first, please do so. Your sibling may have a current caregiver. If so, progressively take on more tasks and responsibilities so you have time to better comprehend what will be expected of you.
3. Get Financial Advice
Again, this topic was highlighted above. There are a lot of moving parts involved here. Don’t assume you know more than you do.
4. Get Legal Advice
It may be guardianship or it may be other forms of legal rights. Do your research, attend to all the paperwork, and consult an expert.
Take Care of YOU
This begins with self-care, e.g. a daily regimen that includes healthy eating habits, regular sleep patterns, sufficient exercise and activity, and stress management. Beyond this foundation, you will likely need a safe space where you can work out your emotions as they pertain to the massive new role you are playing. Weekly therapy sessions will help you process the changes and prepare for a new kind of future.
For more information on Family Therapy click here.
