Establishing a Schedule

Posted by Nurse Linda in Life After Paralysis on July 14, 2021 # Health

Setting a plan for your day can be a new challenge if you have a recent onset of mobility and health issues or if you have been dealing with them for a while. Trying to find your ‘groove’ can be hard to figure out. Sometimes, it feels like all you do is catheterize, turn, and take medication. If you rely on caregivers or must be hospitalized, getting others to understand the importance and timing of your care needs can be a challenge. A simple schedule can help. Others can see what needs to be done and when to do it, so you might not have to ask for assistance all day. It can also help you see when you should be doing something and have free time. Sometimes, seeing a finished schedule is a reminder that you are not always doing self-care but have plenty of time to do other things.Day Planner

Of course, most people do not need a schedule as they or their caregiver know what is needed to be accomplished and when. Occasionally, your life gets altered for a variety of reasons. A schedule can be a huge asset. I recently had a family member hospitalized. Working in healthcare, I know that nurses work on a priority basis and therapists work on a schedule. This can become a challenge for your personal scheduling needs.

In the rehabilitation setting, all staff is aware of personal care issues, but the focus of care in the acute care setting is urgent health needs. At home, you may have a routine set with your regular caregiver. If something happens, causing you to have a different person, they might not know your regular schedule. We saw a lot of this happening, especially during the pandemic.

A basic schedule can help relieve some of the challenges of working with new or different caregivers. It does not need a huge amount of detail but will provide an overview of your healthcare needs so the new caregiver can organize your day within their schedule, especially if you happen to be hospitalized.

For example, if it is time to catheterize, you use your call light to notify the nurse. But the hospital nurse is prioritizing all the care of her patients. The nurse will know the importance of your catheterization time, but another patient who is having pain or a seizure will take priority. The therapist is working with a schedule where they must provide therapy to a certain number of patients per day. Your scheduled time might be right in the middle of your bowel program, which is not ideal. It may be difficult for the therapist to rearrange patient treatments. A schedule provided ahead of time can help the hospital staff organize for a successful day.

To start a schedule, title it with your name. The reader will know this is yours and not the next guys. Then create a brief statement that explains the importance of this care. It can be as simple as, ‘my body requires adherence to a regular schedule to maintain health and avoid complications. Thank you.’ You do not have to explain your diagnosis for everyone to see unless you choose to do so. If in the hospital, that information is kept on a private record. You can post your schedule and provide a copy for your caregiver, so they can have a better picture of your day or explain it to someone else.

To start the schedule, think of the big three self-care activities: bowel, bladder and skin. Bowel care is typically every other day, bladder catheterization is every four to six hours depending on your schedule, skincare typically includes turning every two hours in bed and pressure releases every 10 minutes when up.

Begin your schedule with hourly time slots. Start at midnight and list the hours through the night and day. Then note in the appropriate time slot where your schedule your bowel program, keeping your timing consistent. Add in your catheterization schedule, if you have one, and then note when to turn during time spent in bed and to do pressure releases when up if assistance is needed. If you are doing these activities independently, you might not need this information on a written schedule but making one can help if you have caregivers or if you should suddenly find yourself in the hospital or unable to care for yourself independently.

There are some other care activities that you might want to include in your schedule. Add needs that are unique to you. The focus should be on what you have to accomplish at a specific time. The big three- bowel, bladder and skincare- are critical. Add in other critical activities as needed.

Assistance in eating may be needed if you are unable to have your adaptive equipment with you. Add mealtimes to your schedule, so the caregivers will see you need assistance. It is shocking to me to see individuals with a tray put before them but no way for the individual to get to the food and no one asking why they did not eat. You might need to be assertive by asking for assistance to be fed. Having this need on your schedule can be a clue to the caregiver.

If in the hospital, medications may be different from what you take at home. The hospital generally has a time schedule for medications that can be slightly different from your independent life. They will follow the hospital schedule as that is an efficient process. If you are in the hospital, you will not need the medication schedule as that is a part of routine care.

At home, the use of a pill organizer will lessen the time spent on taking medications. Pill organizers typically are one-week dispensers. You can get a single row if you take medication daily or up to four rows for medications taken four times a day. You fill the pill organizer once a week. This saves a lot of time in organizing your medication at every administration time.Alternatively, pharmacies offer medications to be packaged by time rather than by pill bottles. This has an additional fee but is helpful for some. Your schedule might include your medication time schedule if you have different individuals as caregivers.

Hopefully, you are providing activity to your body. If you are at home and like to exercise or have movement provided to your body at a particular time, add it to your schedule. If you are in the hospital, you will need to schedule time with your nurse for a range of motion or therapy sessions. Timing will need to be negotiated with the caregiver. If in the hospital, be sure your healthcare provider writes an order for this treatment, ensuring it will happen.

Other activities that could be included for at-home care are dressing, transferring to your mobility device, application of splints and braces, hygiene, mouth care, or anything that you require or want done for you. In the hospital, you will not need to dress, but other daily hygiene should be offered. The amount of detail to include in your schedule is up to you.

This is your basic schedule. You will see that there are many open slots with nothing listed to do. This can be a boost if you are feeling like your schedule is ruling your life. At first, it is a challenge to think about all your care needs, but this can help you visualize your day as well. When your care becomes second nature to your day, it is not as overwhelming as it might be in the beginning.

The key to a good schedule is to keep it simple. Just list the activities to be performed. The how to do it can be explained by you, or you can have a separate page for the ‘how to.’ Refer to your discharge manual from the rehabilitation setting for step-by-step instructions for bowel program, catheterization, skincare, and other treatments. The Christopher & Dana Reeve Foundation website also has an abundance of information about these subjects that you can print at no charge. Keeping the schedule simple makes it easy to follow. When the how’s and why’s are detailed into the schedule, it becomes complicated, resulting in important activities being missed or mistakenly overlooked.

When you have a spare moment, create your schedule. It may change over time, so be sure to update it occasionally. You may want your schedule handy for new caregivers that come to your home. It can also be a helpful reminder for your usual caregiver. If you are hospitalized, you may want to bring a few copies, which can smoothen the day for your numerous caregivers. You can keep it in a folder in your room for privacy and refer people to it, have it placed on your chart, or if you feel comfortable- have it taped to your overbed tray table where it is immediately accessible to your caregivers.

It can be challenging to have to repeat your care needs over and over. A schedule can assist in breaking the ice on this topic. It will not solve all care need issues, but it is a gentle start to a conversation about your needs. Just remember, you are responsible for your body and what happens to you. This is one way you can let caregivers know upfront what is needed. That is helpful for everyone. Nurse Linda

Pediatric Consideration: A child might not be able to be as assertive in directing their care as an adult. A schedule of their care has many benefits. The caregiver can see what needs to be accomplished and when. It also provides a certain amount of structure and routine that children need. A schedule lets them know what is happening next. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.