10 Hospital Stay Survival Tips for Caregivers
Recently, an unexpected medical emergency landed me in the hospital with one of my girls. A common childhood illness led to surgery and a longer than expected hospital stay. It was quite an experience to be back in the same hospital, in the same surgical unit, with a different child so many years after Our Girl had last been admitted.
I found that, in this circumstance, there were positives and negatives to being an experienced parent caregiver of a child with complex medical needs.
On the one hand, I did not experience anywhere near the level of anxiety I have in the past. I did not have any hesitation in what I could ask for, or advocate for, in terms of my child’s care. I have enough medical knowledge to be proactive.
On the other hand, I took my experience for granted. I assumed that I had been through “more serious” surgeries before and so I expected that, by comparison, this time would be “a piece of cake”. I was wrong. I took on more than I should have and it took its toll.
This recent hospitalization was a good reminder of how important it is to actively prioritize my own self-care in order to successfully manage a hospital stay as a caregiver. Through my children's many hospital stays, I have learned several hospital survival tips to safeguard my well-being in these physically and emotionally challenging situations.
Here are 10 hospital stay survival tips parent caregivers can use to maintain their strength and well-being while caring for their child through a hospitalization.
#1 Stay hydrated:
It sounds so simple but staying hydrated isn’t always as accessible as one would expect. When you are consumed with your child’s care, you may be afraid to leave them alone, for very long. You may even hesitate to leave the hospital room long enough to get a good drink of water.
Our kids are often getting their hydration through an IV and so we can easily forget about our own need to stay hydrated. You might assume that when a nurse or care partner asks if they can get you anything, they mean only for your child. However, in these circumstances, you need care as much as your child. Supporting you is a way to support your child’s care.
Whenever a nurses asks if they can get you anything, ask for a cup of ice water. If you have the access and opportunity to get it for yourself do so, frequently.
#2 Watch what you eat:
Just like staying hydrated, eating well and often can have a significant impact on your comfort and endurance. It is important to be intentional in making sure you are getting the nourishment you need.
Accessibility can be an even bigger issue for food than it is for water. It can be difficult to eat well when you are confined to a hospital room with your child. If your child can’t or won’t eat, you may need to avoid eating in front of them. Hospital rooms are not set up for food storage and it can be difficult to get away to retrieve food elsewhere.
Some hospitals will deliver meals right to your room. Take advantage of those services. You can also plan to pack, or have a friend bring you, healthy snacks that do not need to be refrigerated. Trail mixes, granola bars, packaged fruits or apple sauce are all great options to hold you over, in between meals.
It is also common to crave comfort foods when you are feeling anxious and stressed. Hospital cafeterias make it easy to find greasy, sugary, carb filled options. However, most offer salad and fresh fruit choices, as well. Sugary drinks can be replaced with real fruit juice or flavored waters.
It is important to be proactive in making food choices that balance between comfort foods and healthier options. Smart dietary choices help to keep digestion moving and energy levels up.
The round-the-clock nature of the hospital makes it one of the hardest places to rest. Staff are always coming in to check vitals, administer medications and change shifts. Morning rounds are always way too early and monitors always seem to alarm, just as you drift off to sleep.
The illusiveness of sleep can feel like pure torture sometimes but there are ways to promote rest even in the disruptive hospital environment.
Bring your own pillow and blanket. Hospital pillows and linens are ok in a pinch but if you are in for a long stay, having your own can go a long way in making you feel comfortable and provide the warmth that encourages deeper, more restorative sleep.
Light and sound can be particularly irritating when you are trying to settle down to rest. Block out bothersome light with an eye mask. Similarly, sound can be minimized with good old fashioned ear plugs. If you are concerned about not being able to hear your child, noise canceling ear buds can minimize background noise while still allowing you to hear your child’s calls. You can also let the nurse know that you are blocking out noise and that they should wake you, if necessary.
#4 Don’t try to go it alone:
The biggest mistake I made during our recent hospital stay was to think that I could go it alone. I had been there and done that many times before, under more difficult circumstances, and so I thought it would be no big deal to try and manage this one on my own. The difference was that I had never done it alone before and I underestimated how demanding the circumstances would be. Fortunately, when I reached my breaking point, I was able to call on my husband for support and he had the flexibility to be there for me and our daughter, for the rest of our hospital stay. It made all the difference!
Not every family will have the resources and flexibility to allow both parents to be there for the entire stay. However, if at all possible, sharing the load will not only benefit your overall well-being as you navigate these difficult circumstances, but will nurture the relationship you have with your partner, as well.
Under Ideal circumstances, both parents will be able to stay. If not ideal, grandparents, family members and friends can be called on to provide respite. Having someone who can stay with your child and share the responsibilities, especially at night, will help to prevent you from becoming overextended and burnt out.
Note: If it is work related responsibilities that are preventing you from being with your partner and child during a hospitalization, make sure that you have accurate information in regards to employer provided benefits, your rights as an employee and access to family leave, before you assume it is not possible.
#5 Get out of the room:
We often fear leaving our child alone and so we try and stay with them as much as possible. It might feel unfair to leave them, when they don’t have the freedom to leave the room themselves, or we worry that they will feel afraid, when we are not with them.
However, when your child is in pain or suffering in any way, it is normal to feel constantly on alert and attentive to their needs. This becomes emotionally and mentally draining. Our mind can only stay in this state for so long before it burns out. We begin to lose our patience, and become short tempered. We may start to experience the effects of exhaustion or feel physical pain, headaches, etc.
Just 30 minutes away from the hospital room can be enough of a mental break to alleviate your stress and allow you to come back to your child refreshed.
If your child is critical or you just don’t want to be that far away from them, you can still get a break while staying close. Just a walk in the hallways outside her room can make a difference. Children’s hospitals often have a lounge “on floor” where parents can grab a coffee or get a shower. Find a sitting area near your child’s room and read a magazine, listen to an audio book, listen to music, people watch, or call a friend.
Try to escape for a bit when your child is asleep. Let the nurse know you are leaving and that they should keep an extra attentive eye on your child, for a bit. You may also want to prepare your child that if they ever wake up and you are not in the room, they shouldn’t worry, you will be right back. Older kids will likely be ok with you leaving the room for a while if they know you are close by or will be back soon. You can also request for “Child Life” to pay a visit to your child’s room, while you step out for a bit.
#6 Go outside:
If you have the opportunity to get out of the hospital room for a longer period of time, make the most of it by getting outside. Fresh air can do wonders to clear our head, alleviate stress and ground our emotions.
Hospitals often have green spaces on their campus specifically to provide a convenient and safe place for parents and patients to get some fresh air. A quick walk around the block can provide a mental escape from the hospital environment while boosting energy through physical exercise, at the same time.
#7 Invite a visitor, or two, for you:
Having loved ones visit during a hospital stay can be a wonderful source of distraction and comfort for both you and your child. Visits break up long days, help you to feel connected to your life outside the hospital and provide opportunity for adult conversation you may be missing. While you do not want to miss these visits entirely, do not hesitate to take advantage of the opportunity to get some time to yourself.
Ask visitors to spend a bit of time with your child reading, playing games, watching movies etc. so that you can get away for a walk, a shower, a meal, or just to sit alone without demands, for a little while.
Even better, invite a friend to visit you specifically. Ask them to take you away from the hospital campus for a meal, a walk or some retail therapy. During our recent hospital stay, a good friend came to visit and took me out to a Mexican restaurant, my favorite, for lunch. It was such a nice break from the hospital room and cafeteria food. It was also a great mental break to catch up with a friend, talking about everything other than our current medical crisis.
#8 Pack comfort items:
I always feel a little relieved when I have the opportunity to plan ahead for a hospital stay, as opposed to an emergency admission. I know how crummy it is to be admitted with nothing but the clothes on my back, so I really appreciate being able to pack a few of my favorite comfort items and go into a hospital stay prepared.
My go to items include thick, warm socks, and casual clothes that are comfortable enough to sleep in but presentable enough to leave the room. Having comfortable, warm and versatile clothing makes a big difference in my ability to cope and focus on my child’s needs.
Most of us have a daily self-care routine that makes us feel presentable and, therefore, more comfortable in public. Having makeup and toiletry items on hand, gives you the opportunity to refresh and feel better in your own skin.
Essential oils for aroma therapy are gaining popularity in hospitals for helping patients deal with anxiety and pain but they are great for caregivers too. If you have the opportunity, pack your favorite oils to promote sleep, reduce feelings of anxiety, alleviate headaches and other forms of physical pain, etc.
Some people find the smell of the hospital to be unsettling, essential oils, sprays or other scents, that remind you of your home environment, can help you to feel more comfortable, as well.
READ MORE: Hospital Stay Survival Kit for Caregivers – Comfort care items to make your next hospital stay more comfortable.
#9 Express your feelings:
Experiencing a medical crisis, where our child’s life and well-being is at risk, is intensely traumatic. There is a lot to process and it can be difficult to work through our fears, worries and emotions on our own. Sometimes, the only way we can find clarity and peace is to express our thoughts and feelings. There are several ways we can do this.
One of the easiest ways to deal with difficult and overwhelming emotions is to write them down. Write out the events of the day to prevent your mind from replaying them over and over. Write down the information the doctors have given you or the questions you have, to alleviate some of the anxiety and stress that comes from trying to remember it all.
Journaling provides an outlet to pour out the worries, frustrations and fears that are swimming around in your head. Don’t worry about what others would think if they read it. Don’t worry if it makes sense. Use it as an opportunity to express yourself in a healthy way that allows you to process and mentally prepare for what is next.
Caringbridge is a great way to record your journaling online. Caringbridge has the added bonus of keeping family and friends up to date, as circumstances unfold, eliminating the need to repeat your updates, over and over.
If you find that you are struggling to manage your feeling and worries on your own, reach out and ask your nurse if there is someone you can talk to. Hospitals typically have a social worker or counselor on staff to support parents as they process and cope with medical crisis.
Alternately, you can also request to speak to the hospital Chaplin. Or, if you belong to a house of worship, contact your religious leader and request a visit. If they are too far away to visit in person, they can request a local pastor, priest etc. to come to you and provide spiritual guidance and comfort.
#10 Look for distraction:
Long days in the hospital can fly by or crawl along. The more days you spend inpatient the longer they seem to get. Make sure you have something you enjoy to help you relax and pass the time.
If you did not have to the opportunity to plan ahead and pack items of your own, hospitals often have family resource rooms with books, magazines, and movies you can borrow. Hospital gift shops also supply puzzle books, craft kits and adult coloring books, journals, etc.
These days, we have the benefit of an endless supply of entertainment right in our back pocket. Use your smart phone to access apps, games, audio books, videos, etc. Your device can also help you to easily stay in touch with your support system. Online visits with family, friends, your spouse and kids, at home, can help to pass the time and provide encouragement for you and your child, as well.
If feeling up to it, you and your child can entertain each other by spending some time watching movies, reading books and playing games. Child Life may be able to provide these, as well as, craft projects and educational materials for you and your child to do together. Ask your nurse about programs and services the hospital may provide to entertain their young patients.
Note: If available, I highly recommend reserving a room at the Ronald McDonald House. This fantastic resource will help to provide you with support you need to carry out many of the survival tips discussed above. The House will provide you with a place you can escape to too get a break from the hospital room, and a comfortable and quite place to get quality rest whether you grab a short mid-day nap or stay the night. Many houses offer volunteer provided meals and facilities to shower and refresh, among many other things. You don’t have to spend every night there, for it to be worthwhile.
Whether planned or unexpected, the demands of a long hospital stay with our child can dramatically drain your physical and emotional resources. It is important to be mindful and purposeful in using these small, but effective, hospital stay survival tips, to maintain and replenish your strength and energy.
It is also important to allow yourself the time and opportunity to recover after a hospitalization. No matter how attentive you are to your self-care needs during your stay, you will come away from the experience depleted. Allow yourself, and your child, at least a couple of days at home to rest and readjust to your normal environment. It is often more difficult to do than you might expect.
Hospitalizations are traumatic for our kids and for us, by default. It can take several weeks or even months for them to process their experience. It is common for there to be some fall out. You may observe changes in your child’s behavior and strong reactions to everyday things that used to be routine. This extends the challenges we face as caregivers because even though the hospital stay is over the experience may not be. Continue to practice self-care throughout this time and build up the resources you need to support your child, and yourself, throughout the recovery process.
Self-Care Action Discussed in this Post:
Keep these self-care tips in mind, the next time you are faced with a long hospital stay, with your child. Choose one or two areas you most struggle with, and pick one strategy for each. Focus your attention on those self-care strategies to help maintain your strength and safeguard your well-being through a long hospital stay.
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