Being the Caregiver

Posted by Nurse Linda in Life After Paralysis on May 07, 2021 # Caregiving

Many individuals with significant healthcare issues rely on others to help them with personal care and support. Individuals often mention spouses, mothers, fathers, other relatives, and friends who have made a huge difference in their success as they transition to a new, unchosen phase of life. Grateful does not begin to describe their thanks.

If you are new to caregiving or have been doing it for a while, you know there are challenges. A great deal of your time, a lot of effort and challenges to your wellbeing are encountered. Getting started in figuring out what must be done and how to do it can be overwhelming. Later, after you have a routine, you might want to revisit what you are doing and if the status quo needs to be adjusted.woman in wheelchair outside holding hands with a man walking

There are several entry points to caregiving. Becoming a caregiver may begin with an illness that affects you emotionally but does not require a lot of physical care. Responsibilities may be shifted as the disease progresses. This can happen suddenly or slowly over time, giving you a little more time to adjust to changing responsibilities. However, the slower induction can be wearing as more and more falls to you.

Trauma, on the other hand, is a sharp change. At first, you are just worried about the survival of the individual. Your emotions are completely raw, and you begin to delve into how life has changed. This is an intense adjustment.

These sudden changes can be due to disease, or the trauma that affects your daily life and wellbeing. You do not get to choose which process you will go through or even that this change is happening at all. It is not unusual for individuals to look at people with another type of onset and justify what you are going through as the better or worse transition. It is also not unusual to wish it were the other way around. It is mostly not uncommon to wish the life-altering situation never happened at all.

But here you are in this new world. Words cannot make things go things back to the way they once were. But you can care for yourself, which will help you care for the individual going through the process of adaption. Today, we are just going to focus on you.

If you are bringing someone home from the hospital, there is a big challenge ahead. Follow the advice of healthcare providers about house arrangement, equipment, and supplies. Ask questions, understand why. They have done this before, so they have a good idea of what is needed.

Being in control of your home is a safety net; however, let this drop just a bit for now. You have been under the direction of healthcare providers during the time in the hospital. Allowing them to direct you in your own home can seem like the last threshold of invasion. But for now, ask questions, get an understanding but let them provide some direction.

Learn all you can while your individual is in the hospital and from home care professionals. There is a lot to learn. Take it step by step. Take notes. Take pictures or videos of equipment on the person, how to position, how to transfer, suctioning, tube feeding, anything. Little nuances will become more critical when you are on your own. Looking at a photo might help you understand where to place your feet or how to apply a splint, or 'I just forgot all about that part.' Write down the daily schedule so you can follow it at home.

All the flurry of activity will soon be over, and it will be you and your person. You will become co-drivers of care. It is critical to include the person needing care as well as impacts on other family members in care decisions. Some decisions will fall just to the person needing care. It is their body, and they should be in charge of it. However, as a caregiver, your input is important, too. You both might agree not to begin the day at 5:30 am, or 6 am. At home, you can start the day with whatever is practical. If you need to work around your schedule, that should be included in the plan. You must set times for activities that cannot be adjusted without health consequences. The bowel program must be done at a specific time and day. Catheterization must be done on a schedule. Turning must be done on a schedule. Use those times as a framework. Other activities can have optional scheduling.

If a disease is progressing slowly, you have a bit more leeway in the organization of time. There might be a length of time when you can get used to doing some tasks before a new one is added. The incremental changes might be easier to adapt to over time. However, with each addition, allow some time for flexibility if possible. With the person involved, decide together if it is easier to do a bowel program in the morning or at night. It is also essential to choose how you want to manage your catheter and the best turning method.

Starting suddenly or gradually adding caregiving activities is a process. Life changes and evolves. Periodically, review tasks and schedules to ensure care is being provided safely and what is best for health for both of you. Again, some of the task's timing cannot be changed, but what about other activities? Allow time to be outdoors or to do something fun. If you are doing catheterization, learn to do it discretely so you can be out for longer than a few hours. Work together to build sitting tolerance. There are all sorts of adaptions that will allow both of you more freedom, even if you are the sole provider of care.

If you are the sole provider of care, think about anyone in your family or community that can provide a respite for you. This will need to pause until it is COVID safe. Perhaps someone can visit while you run to the grocery or get your hair cut or just a trip to wherever you want to go for an hour or two. Volunteers do not typically do personal care, but they can provide some alone time for you. At first, it is hard to leave your responsibilities with another. If so, sit in the backyard during the visit, then a short drive. Eventually, you will become comfortable with your volunteer.

Being the sole provider of care brings up another point. Can the person who requires care do some of the tasks on their own? Encourage independence. They might not have learned to do a bowel program on their own in rehabilitation but can learn bowel program techniques even with minimal hand function.

Use the resources from the Christopher & Dana Reeve Paralysis Foundation. These include information about all points of care for individuals with paralysis and information specialists at the Paralysis Resource Center for help and direction. Talk with others on the Reeve Community. These are people who are in similar situations as you. Peer mentors can assist individuals with navigating within their community because they have done it. There is also assistance to navigate through ups and downs. There are so many resources available at no charge.

There may be a time when you need more help in providing assistance. Check with your healthcare provider about requesting a home health aide. They will know the terminology that is needed to discuss this option with your healthcare payor. If this is not an option with your payor, think about if you can arrange payment out of pocket. This is often a difficult decision as resources can be scarce. You might find a student in healthcare that needs the experience or someone with a few hours a day that can help. A volunteer or other family member might be available to assist with the night shift or other activities, even if just a night or two a week. These little collections of assistance help you get a moment.

Remember, if you have extra people helping or not, you can get just a moment to yourself by going into another room and just closing your eyes for a while. This is such a refresher. Such a little thing can empower and motivate you.

Keep up with your own healthcare appointments, medications, and needs. Also, there is help for your mental wellbeing. There are mental health specialists that work with families who have individuals with extensive healthcare needs. Working together can bridge the gap of feelings from doing well to guilty thoughts.

Mostly, remember to enjoy the person for who you are caring. They have emotions, adaptions and all the roller coaster feelings you have. Take delight in moments from the funny to the absurd. Learn to laugh again. Nurse Linda

Pediatric Consideration:

A child with health issues creates new concerns for parents. It is typically not what anyone expects. Guilt can be overwhelming even though there is no fault. There are differences in caring for a small child with health challenges. Society deems that parents should care for their children. With healthcare needs, you may find you need help to ease the 24/7 challenge. Pediatric healthcare professionals are experienced in providing care while ensuring your role as a parent.

There are funds in most states to assist with your child's needs. These can have challenging paperwork but like any payor, keep at it. Typically, your first request will be denied. Know that you will have to keep working up the chain of command until success can be reached.

Adaptions in school may be needed. This can be accomplished through an Individual Education Plan (IEP). Be sure to provide your insight and knowledge about your child into the process. Sometimes, parents can be overwhelmed with a group of professionals providing thoughts and opinions. You know your child best, so be prepared. Review each item and process to make sure it fits the individual needs of your child.

Children grow and develop at differing rates. Your child will not be different. They may soar in some areas and are challenged with other skills. This is how children are. Encourage your child, set them for success but understand every child develops at their speed. 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.