Coping with Hospital Stays

If you have hydrocephalus, the hospital may be a very familiar place. Whether you’ve needed to visit several times or just a couple, you’ve probably learned that every hospital stay varies. The reality is that every visit will be different for every — every time. This means that the time spent there, the events (tests, surgeries, decisions made), and the overall ease and experience will change every single time, as it evolves to meet the current situation at hand. Understanding and accepting this simple fact can make a world of difference in how you feel about hospitals, which are a necessary part of the care of a patient with hydrocephalus.

When you arrive, naturally you are already going to be anxious and stressed, because either yourself or a loved one is suffering from a suspected (or known) complication. As a result, much of the process and order of procedures can seem frustrating or confusing. Perhaps it’s taking longer than you expected to receive your test results. There might be seemingly long periods of time waiting for doctors to make a decision, or for pain control to kick in before or after a surgery. However, there are a lot of ways you can ease the stresses of a hospital stay, both before and during your admission. We compiled some ideas and tips that we hope will help you prepare physically, mentally, and emotionally for future (or current) trips. From distractions to comfort items, we hope this information will help to make your hospital stay a bit easier to navigate.

Physical Preparation and Logistics

Unfortunately, some hospital visits are going to be sudden and unexpected. With hydrocephalus, things can change quickly. If you have the opportunity to use these tips to prepare for any future event prior to it happening, it can really help the process, especially in an emergency.

• Download and use the Hydrocephalus Association’s mobile app, HydroAssist®. HydroAssist® is the first mobile app that allows you to store and record all of the vital information you need for your care in one easy spot. This includes the contact information for your healthcare team, emergency contacts, current and past hydrocephalus treatments, and images from your MRI and/or CT. If you have a shunt, you can store the information for what type and who the manufacturer is, as well as the current setting if you have a programmable valve. This amazing tool is offered at no cost. If you don’t have a smartphone or access to a computer or laptop, it’s important to have all of these things written down and carry them with you always. Since the hospital staff will ask for all of this information, having it handy will reduce the stress of trying to remember everything.
• Know where the nearest hospital is, and what your overall game plan will be if you need to make a trip there. This includes logistics such as childcare, travel (if your hospital is not nearby), and arrangements with family and employers. Since each patient will have a unique set of circumstances, make your own checklist of things to do (even as simple as turning off the lights when you leave the house!) and people to contact if a visit to the hospital is necessary. Keep this list somewhere where you can find it because it will really help when you’re in a panic.
• Many patients, parents, or caregivers keep a “hospital bag” packed with basic items. If you feel like this will ease your mind (even if you haven’t had a hospital visit in a very long time), then it’s definitely worth doing. Just knowing you can grab that bag on the way out the door might make you feel more prepared.

Whether you pre-pack a hospital bag or not, when you’re deciding what to take to the hospital, consider items that’ll make you comfortable and help you take your focus off of your stay. Listed below are a few suggestions:

• • Your most comfortable blanket(s) and/or pillow(s)
  • Comfy clothing, underwear, and preferred toiletries
  • Your favorite stuffed animal (You would be shocked how many adults — especially young adults — find comfort in them)
  • Headphones to listen to music and/or help block out noise
  • Books if you enjoy reading
  • Pictures of family members, pets, or anything that will make you smile.

Once you have been admitted to the hospital, you may or may not know what the doctor’s decision is for your treatment. Often, hydrocephalus patients are admitted to the hospital due to their symptoms, but a decision is not immediately made about surgery until further observation or tests are performed. Patience is really important. If you are in pain, ask your nursing staff what plans the doctor has made for your pain management. Try your best to rest, even if it’s hard.

• One commonality among individuals living with hydrocephalus seems to be that once a doctor, PA, or nurse leaves the room, their mind is flooded with questions that they wish they would’ve asked. A solution to this is to have a notebook handy. If a question pops into your head, write it down. Or you can take notes on your phone. That way when they come back, you’ll be ready.
• If you are able, get up and move periodically! If moving is difficult for you, you may need a nurse or tech to assist you – but they are always willing to help, and it is well worth it. Staying in bed all day is not only extremely boring but if you’re stuck in a hospital bed for even a couple of days, your muscles may not totally cooperate with you when you finally do get out of bed. Moving around can also boost your mood — in a way, reminding yourself that whatever your situation may be, it isn’t going to control you.
• Remember that you have to advocate for yourself. Clear communication is key, and this often means asking questions. Want to know why a certain test needs to be done? Don’t understand exactly what the results you were given mean? Ask! No doctor or nurse should get mad at you for asking questions. They understand that, as obvious as this sounds, you want to know what’s going on with your care. And remember that there is nothing wrong with asking for a second opinion if you feel it’s necessary.
• Hospitals have special agencies and individuals that are there for the advocacy and protection of their patients. If you ever feel like you are mistreated physically, verbally, emotionally, or otherwise – look for the phone number or contact information that is often posted on the wall in your hospital room or in the packet of information you received when you were admitted. If all else fails, tell a staff member, doctor, or nurse that you need to be connected to this department. You will be connected to a hospital social worker or patient advocate who can help to protect your safety.
• If you are a parent or caregiver, ask about the sleeping arrangements and other logistics for your stay. Make sure that you have a good understanding of all guidelines, curfews, and any restrictions that are in place due to COVID-19 or other current events. Remember that it is crucial that you stay healthy and calm during the stay of your loved one, so ask about the availability of healthy meals, coffee, and a place where you can get some fresh air. Make sure to take breaks and/or shifts if that is possible. If you aren’t sure when a good time for you to take a break would be, ask the nursing staff. They will help you make a plan to break away and get some physical and mental rest.

The Mental Game

A hospital stay is challenging for everyone involved. On top of the physical aspects of it, the whole event of surgery or hospitalization is mentally taxing for the patient and the parent/caregiver. Here are some things to consider in regard to keeping your thoughts positive and calm:

• Understand that perceptions of hospitals are generally driven by societal preconceptions and fears, and are fueled by the news, movies, TV shows, etc. Yes, hospitals are feared because they are the place you visit when you are having an awful physical crisis, but don’t miss out on the fact that they are an amazing place where incredibly talented and caring individuals are always there, trying their best to help you heal and feel better. Simply processing this fact helps so much! Practice saying positive things out loud to people whenever you are asked about your care. Even if it seems counterintuitive, it will make you feel more confident and at peace when you have to visit the hospital or your care team.
• Know how your cultural and spiritual beliefs may impact a hospital stay and ask for these needs to be accommodated. The staff will always do their best to meet your requests and make you feel as comfortable as possible.
• Consider techniques and practices that help to keep your mind calm, such as meditation, mindfulness, affirmation, and visualization. If you have a smartphone, there are lots of free apps that can help. Your local library is also a good resource for learning more about these modalities.

Emotional Support

If you are in the hospital and you find yourself feeling anxious, depressed, or upset, please ask for help. If you don’t have a loved one or family member there with you, let the nursing staff know how you are feeling. Just talking to someone can often help, and a nurse will also know if there are other resources available to ease your anxiety and emotional pain.

• Know who your emotional support system is. Do you have a family member or a friend who will be accompanying you for your stay, or visiting you while you are in the hospital? Even though there are currently some restrictions in place for COVID-19 (these vary depending on location), it’s important to know what the visiting arrangements are for your hospital, and who you might be able to count on to come to see you. If no one can physically visit you, have a list of phone numbers of people you can call or text when you are feeling down.
• As mentioned before, your hospital will likely have resources for emotional support. You might request a visit from a chaplain, social worker, or an emotional support volunteer. These visits can do wonders for lifting your spirit, especially if you are alone in the hospital. Remember, these people are also available to visit a parent or caregiver who is feeling distressed.
• Does your hospital have therapy dogs? This could be an excellent question for one of your doctors or nurses, especially if you’re a dog person. Therapy dogs have proven to lighten the mood of many patients and make them feel more at ease. Though some hospitals will actually ask you if you would like to see one, it could be better for you to take it into your own hands just in case they don’t ask. You may be surprised how easily one of these furry friends could make you smile.
• Social media such as Instagram, Facebook, etc. can be a way to communicate with friends and stay connected to your social circle and family while you are in the hospital. Using these tools, you can even connect worldwide with other patients experiencing similar challenges, and that can be greatly encouraging.
• If you like to write, keeping a journal can be helpful. Not only is it a way that you can express your feelings and emotions, but it’s a way to document your journey.

In Closing

As we mentioned before, remember that hospital stays are difficult for everyone, no matter what your unique situation is. Remember to keep your head up and be proud of yourself even during difficult moments. Whether this is your first treatment or complication, or you’ve done this dozens of times, know that you’ve been a warrior ever since your hydrocephalus journey started. Knowing that every day brings the possibility of complications, you’ve battled time and time again. A hospital stay may seem like a mountain to climb, but you can do it.

This article was written by HA volunteers, Amy Thomas, and Ian McDonough.