Living Independently

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    Independence with Hydrocephalus: Possible or Not?

    If you are teenager or young adult with hydrocephalus, or a parent of a child with hydrocephalus, the question, “Can people with hydrocephalus live on their own?” has likely crossed your mind. Transitioning from living at home to living independently is an exciting stage in your life. However, it can present unique challenges when you have a chronic medical condition such as hydrocephalus. Hydrocephalus can affect your independence and day-to-day needs, and there are additional considerations to keep in mind.

    Did you know, it is estimated that 40% of infants and 60% of all children diagnosed with hydrocephalus will lead independent lives? With sufficient assistance and social supports in place, many go on to enjoy different opportunities and liberties in their everyday lives.

    Independence means something different for everyone. A transition to independent living can be defined as moving away from home to live on your own, with family, or with friends. Sometimes, this transition may include a more structured or supervised living arrangement. Independence can also simply mean learning to manage your life, condition, and day-to-day needs with less assistance or without any assistance at all. Some may be able to handle daily activities and tasks on their own, while others may need help with more complex issues such as financial planning. Deciding to move out on your own will largely depend on your ability to manage your health and daily needs with little to no assistance from others.

    There is no right or wrong decision. Every person is different, and no two people feel exactly the same. Before taking the first step, it’s important to assess your needs and decide what is the right choice for you.

    Questions to Ask Yourself

    Prior to moving into your own residence, consider the following questions:

    • Can I handle the day-to-day management and needs of my hydrocephalus and/or other conditions?
    • Can I schedule appointments and follow-ups with my medical team?
    • Do I feel confident advocating for myself at doctor appointments?
    • Can I order, organize, and properly take my medications?
    • Can I drive? Or, do I have access to readily available transportation to get to and from school, work, doctor appointments, or the grocery store?
    • If I am not feeling well, will I be able to clean, shop for groceries, prepare meals, and pay bills?
    • If I am not feeling well, am I comfortable asking for help or assistance when I need it?
    • Have I recorded and can I refer to my monthly expenses and income? Do I have a set budget that I can follow?
    • Can I prepare my yearly income tax return? Or, do I know who to contact for assistance?
    • If I have a complication or an emergency occurs, will I be able to get assistance from others? Do I have an emergency plan in place?
    • Should I begin with supportive living and then move towards increased independence?

    Whatever you decide, it is important to prepare for this life-changing event.

    If you decide to move far away, we strongly encourage you to establish a plan for local care in the event of a medical emergency. The first step is to ask your neurosurgeon to recommend a neurosurgeon near your new home. You can also visit our Physician Directory for additional contacts. Once you move, follow up with a personal visit to your new neurosurgeon and make sure that he or she receives a copy of your medical records and scans.

    Preparing for an Emergency

    Hydrocephalus is unpredictable and a complication can arise at any time. While the circumstances will differ for each person, it’s vital that you are prepared for an emergency. If you or your loved one goes into shunt or ETV failure, time is critical and preparation is extremely important.

    It is essential that you have all your medical information close at hand and in a safe place. Most people also give a second copy to their parents or another personal contact. Listed below are tips to help you prepare in advance.

    • Download and enter your information into HA’s mobile application, HydroAssist™.
    • Set up a Medical ID on your cell phone.
      • iPhone Instructions: set up your Medical ID in the Health app. Medical ID helps first responders access your critical medical information from the Lock screen without the necessity of entering your passcode. First responders can access information such as medical conditions, allergies, and current medications, as well as who to contact in case of an emergency. To learn more, click here.
      • Android instructions: download the Medical ID app. After setting up your Medical ID, make sure you go to: Settings > Accessibility > Medical ID and select Turn On. This will ensure emergency personnel can access your critical medical information from your Lock screen without needing your passcode. For Frequently Asked Questions, click here.
    • Have a printed copy of your medical history and medications. Download our template.
    • Have a copy of your health insurance card.
    • Have your photo ID.
    • Have a medical durable Power of Attorney (POA) for Healthcare. Make sure you, your doctor, and power of attorney have a copy.
    • Keep a copy of your recent imaging. We suggest having both a baseline and images taken during a complication. Remember, you can store your images in HydroAssist™.
    • Consider purchasing a Medical Alert ID.
    • Consider purchasing an Emergency Communication Device, also known as a Medical Alert System. These can provide both peace of mind and security for yourself and your loved ones. For more information, click here.
    • If feasible, consider purchasing an Apple watch. Not only can you set reminders to take medications, but the Emergency SOS feature can also allow you to quickly and easily call for help and alert your emergency contacts. For more information on the SOS feature, click here. To learn more about the Apple Watch Series 4 Fall Detection, click here.
    • Many young adults with chronic conditions gain their independence by choosing to live with a service animal. Ask your medical provider if this would be beneficial for you.
    • Have a “go bag” ready that you can grab on your way out the door. Pack a few days of clothes, basic electronics, toiletries, your prescription medicines, and any other important items.
    • Consider giving one of your parents, close relatives, or friends a spare key to your house.
    • Know who to contact for help. It can be difficult to ask for help, but when an emergency arises, it’s critical to have a list of people you can rely on.

    Communicating with Your Parents and Support System

    Whether you have hydrocephalus or not, many young adults say their parents want them to check in way too often. While parents’ demands can seem overwhelming, their support is important, and so is their comfort with your safety. So, do your parents a favor, and work out a schedule for communication. Technology makes this easy. It’s not hard to send your parents a text every few days or leave them a voicemail to let them know what’s going on in your life.

    Since hydrocephalus can sometimes make parents overprotective, striking a balance between their concerns and yours is crucial. Open communication is not just a good idea: it’s essential for your parents’ sanity, and for yours. We encourage you to demonstrate your independence by sharing what you’ve done to effectively manage your hydrocephalus and ensure your safety. If your parents are confident that you’ve put an emergency plan into place, and if they know the details of that plan, they will be more comfortable letting go.

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