Some individuals with spinal cord injury (SCI) from a medical cause or trauma might require assistance in carrying out their activities of daily living. Generally, more independence remains the lower the injury. Still, individuals vary in the amount of assistance they need even within injury levels.

You might be in a position where caregiving has fallen to you. This position can be extremely rewarding but it can also be challenging. The relationship with the person providing care and the person receiving care makes all the difference.

Some issues with being a caregiver include knowledge about the situation and how to provide care, the importance of timing in providing care, and if something does not go well, who is going to fix it? That would be you, the caregiver. Because of your responsibilities as the caregiver, the situation can sometimes feel quite overwhelming. This column contains some thoughts gathered through the years from caregivers. There are many books, blogs, and articles about caregiving so hopefully, these points will be some less discussed, thought-provoking insights for your consideration.

Often people think of a hospitalization as a respite for the caregiver but that usually does not happen. Hospital staff, outside of rehabilitation facilities, are rarely educated about the intricacies of spinal cord injury care. They have been educated about spinal cord injury and basic needs but not the detail of a bowel program or the need to be super vigilant in turning. Hospitals work on a priority structure. The person with the most acute need will be attended first. Care requirements like bowel programs are low on the priority list.

As a family member, the position of caregiver may fall to you. Some family members will volunteer to be of assistance but mostly caregiving falls to the spouse, partner, significant other, or children. Others might join in occasionally. Many people do not have the resources to hire someone to fill the role.

Don’t rush yourself into adaption to this challenge. For some people, caregiving comes easier than for others. Some don’t like the idea of dealing with intimate care especially involving urine and stool, others don’t find it so awkward. Ease into it in your own time. You might still have to do the bowel program but allow yourself time to mentally adjust. You never have to like doing it but accept that it must be done. This can take time. Anything done repeatedly becomes less of a challenge as you deal with the activity. With time, the activity will become less unusual and just a part of the day.

Give yourself time to develop your new caregiving role. At first, it will be a challenge to adjust to the many activities that must be accomplished. Added to the adjustment is the tight time scheduling of bladder elimination, bowel program and turning. It will take a while to create a workable schedule for your family member as well as for you. The schedule should be a combination of both of your routines. Find solutions that work with both of your schedules.

Bathing, dressing, exercising, and transferring someone else takes a lot of time and physical energy. Remember your loved one has been exercising and building their bodies in rehab, but my guess is during that time, you have not. Even if you are into fitness, it will take some time before your body is able to accommodate the new movements of the required physical activities.

Your loved one has been through a lot both physically and emotionally. They might be afraid of getting hurt again or damaging some other part of their body. You might be feeling the same way. There is a lot of information to take in while your loved one is so sick. Getting a home routine established is a challenge. You might opt to start with following the hospital schedule. However, there were a lot of people to help and fresh people every shift. Now, there might just be you.

Sleep must be a priority for both people in the caregiving relationship, the receiver, and the provider. Until skin tolerance is built up and catheterization schedules are regulated to the home schedule, the caregiver can be awake almost around the clock. Hopefully, schedule adjustment was discussed at the rehab center. If not, work with your healthcare provider, a home health nurse, and the family member to see how new activities can be altered for everyone to get a good night’s sleep. Create intermediate steps to get to the goal.

Now you are at home, modify the day to your schedule not the hospitals. Change catheterization times for your home life. You still might need to get up at night, but can that be arranged to one time vs. two or three? Cath at bedtime and then ask the healthcare professional if the times at night can be stretched to five hours and eventually to six hours. Intermittent catheterization should be done between four- and six-hour intervals depending on the needs of the individual with spinal cord injury.

Figure out how to turn quickly and easily so you can go back to sleep. Have your person learn to turn themselves if they are able. Keep supplies available such as incontinence pads if changes are needed, and pillows for positioning.

Set the standard that your loved one should do what they can for themselves. This must be through the development of goals with input from your family member. Your priority might not be their priority or may not meet their present ability level. Rehab stays are short. Independence achievement might fall to you. Also know that independence does not come overnight. Work on independence in one area before moving to other independent activities. Moving too fast with too many different activities is overwhelming. Too many goals at one time can make progress slower.

Any person who has been through a significant trauma will get tired quickly. This can include you, the caregiver as you have been through a significant trauma as well. Even a ride in the car, although pleasant, can be exhausting.

Changes in activities and the time of day can affect a person’s abilities. Perhaps the person for whom you are providing care can catheterize in the morning or even during the day but at bedtime, they are wiped out and need help. Overtime, both of you will strengthen and find your rhythm for when to stress independence and when to give a break by helping.

Typically, you want the person with spinal cord injury to become more independent as they are able. However, people with progressive medical conditions might need more help as their disease progresses. In this case, you might find yourself providing more assistance as time goes by. Both the person with SCI and the caregiver will require additional assistance with aging.

Everyone needs a break now and then. As a caregiver you need some time to yourself. This is recommended by every expert in the caregiving field. Get away, but how, especially if there is no one to take your place. Start with five minutes of just closing your eyes and let your mind float away. This sounds sort of silly but give it a try. It feels wonderful. Both caregivers and non-caregivers find success with this technique. It may take several attempts and time before finding stress relief with this process.

As you become more comfortable in your role as caregiver, step outside for a short break. Breathe some fresh air. Get some sunshine. Be sure you can still hear what is happening inside. This provides a change of scenery and a break. Little things can really recharge your own mental status.

It will be very important to find a good sounding board in a friend, someone who will listen, not try to solve your issue, and not judge. You might connect with another caregiver you met at the rehab center, health professional’s office or even in an online chat room. The Christopher and Dana Reeve Paralysis Foundation has a community designated location where you can interact with individuals in the same caregiver role as you. This is really a wonderful resource because it is compassionate and real.

Being a caregiver can change your role in the family dynamic. Set times for providing care and times for interaction as people/spouse/family member/child. Some people will even put on a smock or some other physical signal that they are now in caregiving role. For adults, separate intimacy time and personal care time.

Involve the person to whom you are providing care in decision making. It is so easy to slip into the role of ‘boss’ rather than caregiver. A person with spinal cord injury is in charge of their own life as you are in charge of yours. Be sure you discuss all matters with them from their personal care to major healthcare decisions. These are their issues, not yours. You may have a role as caregiver but the decisions about their body and their life belong to them. You can provide your insight for consideration but not determination of choices. Remember their role in the family as well. Be sure that role continues.

Someone volunteering to sit with your loved one is different that someone providing care. People love to volunteer to visit or to read because there is no personal care involved. First sit with them, then leave the room but not the house, then go outside, then go to the store or park or whatever you choose. You do not have to just leave because someone else has come to visit.

These are just some ideas about caregiving. People who have experience with this process will have more thoughts. Please feel free to add your experiences to the community so others can benefit from your experience. Nurse Linda

Pediatric Consideration: It is important to keep family members involved in the lives of children. Some family members might be hesitant to engage with the child as they might be fearful of inadvertently harming the child. This comes from a lack of education and understanding about needs.

Privately, have a frank discussion concerning the abilities of the child. Do not let your child think that they are an issue. It is the family member’s lack of understanding that is the source of the discomfort. Slowly, integrate family members into the life of the child. This will help the family member adjust. As the family member becomes more comfortable, the relationship with the child can flourish.

Some extended family members will want to be actively involved which can be a great help to provide some respite time for the family caregiver. Other family members might want a relationship with the child, but physical care might overpower them, or they might not have the physical ability to do so. Accept what people are prepared to do. Bonds can develop with physical care but even more so with strong relationships. 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.