My Time as a Caretaker of Someone with a Spinal Cord Injury

When people think of the word “quadriplegic”, they almost always go to the image of Christopher Reeves prior to his death. But Christopher Reeves had an injury that was very high in the cervical spine and caused some of the most notable effects of a spinal cord injury. Which was no use of his arms or legs, he was dependent on a ventilator because his diaphragm no longer worked, and he used what is commonly called a “sip and puff” wheel chair. This was the image that people saw because he was arguably the most high profile person with a Spinal Cord Injury. That is what I also thought, until I met my ex-wife. When we met, she told me that no two spinal cord injuries are the same over the years I learned how true this was.

What is the Spinal Cord, well it is the main highway that your brain uses to send signals to the rest of your body. It sends these signals voluntary and involuntary. To take a step is an example of a voluntary movement. But the constriction of your blood vessels when you work out is an example of an involuntary impulse. The spinal cord runs from the base of your brain, also know as the brain stem and runs almost to your waist. Branching of the main cord are groups of nerves that send and receive impulses from your brain. The severity of an injury depends on the part of the spinal cord that is affected, and how it is affected.

For years quadriplegia has been the term used for people with loss of muscle strength in all four extremities. However, over the years the term has been replaced by Tetraplegia, which refers to injuries that originate in the cervical region of the spine. Paraplegia, is the term used for people with injuries that originate in the thoracic or lumbar regions of the spine, and they typically only cause a loss of muscle strength in the lower extremities. Along with the location of the injury, it depends if the injury is a complete or an Incomplete injury to the cord. As it sounds, a complete SCI is when a total lose of all motor and sensory functions below the injury site. This type of injury accounts for almost half of all SCI’s and is typically caused by a contusion or bruising to the spinal cord, or a lose of blood at the site of the injury. Even with complete SCI’s the spinal cord is rarely cut or transected. The other type of SCI injury, is called an incomplete SCI. Which simply means there is some form of sensation or movement below the injury site. Within this injury pattern there is numerous other classifications that I will not get into now. This information is given as a back ground as I discuss things going forward you can have a basic understanding of some of the challenges that a care taker has.

A little background on myself, I was married to a woman with a SCI, and was her primary care taker for most of the time we were together. Outside of my time at work, I was there helping her get through the day. This included showers, catheter changes, emptying urinary bags, and numerous other things on top of the normal day to day things of raising a family and maintaining a home. I write this not from the point of view of “poor me’ but to give someone who is new to this world and honest look into the daily life of being a caretaker and to offer some tips and explain some of the adaptive things out there that can make life a little easier.

I want to start with my normal day and what it included, this started with just getting out of bed in the morning, which was a 20-30 min process. The first thing that needed to be done once it was time to get up, was to first switch her night time catheter bad to her day time “leg bag”. Both of these bags have to be kept very clean to cut down the risk of getting and urinary tract infection. We did this by filling both of the bags when not in use with bleach, and thoroughly cleaning them of any bleach prior to being used. This was very important because due to the lack of sensation she could not feel the bleach on her skin and would cause burns if not cleaned very well. And this did happen from time to time no matter how hard I tried. The next thing would be to get her dressed, which due to her injury level she was little help with. She had little strength in her arms and no use of her hands, so I had to undress her and dress her. This involved a lot of rolling her back and forth to get pants on and making sure her Leg bag did not open and spill all over the bed. From there I would finally get her out of the bed and into her chair to finish getting her dressed.

When it came to transfers, there are a lot of different options, depending on your physical abilities or your financial situation. For me, being in my mid 20’s when we met and 34 when we ended up divorcing, I opted to just lift her from the bed and place her in her wheel chair. However that is not an option for every one due to age or physical limitations of the caretaker themselves. Some options out there include manual and electric Hoyer lifts, roof mounted lift systems, which include options for use in the entire home. But the Hoyer lift is the most common, and are also used in most hospitals and nursing homes across the country to reduce the lifting healthcare workers have to do and reduce back injuries. We did have a hydraulic Hoyer lift, which the few times we did use it was more cumbersome than just lifting her to me. To use the lift, you have to place a sling under her and them attach it to the lift using the straps attached to the sling. From there I had to pump the hydraulic up to lift her up and off the bed. Once she was in the air, I would have to either move the lift or her wheel chair under her and then lower her down into her wheel chair. This would take about 10-15 min to use this device, where I would have her moved on under a minute by just lifting her myself. The electric Hoyer works just as the manual, except as you guessed, it electric and you do not have to pump it. Also with some of the electric lifts, they do have an option to help you move and position the lift. As for the roof mounted lifts, they work almost the same as a Hoyer lift, but they are mounted to the roof of your home and do make the transfer easier. This last option and in my option the best is the while house track system. I was looking at adding the SureHands lift system to my house at one point, this system would have been able to add overhead track that can be run through out the entire home. For me I was looking at mainly from the bed to the shower, which would have made showers much easier than trying to move her into the shower while in her shower chair. For more information check out Surehands.com.

So this has been the first 20-30 minutes of my day, just getting out of bed and getting dressed. From there she still needed to brush her teeth and hair. She could brush her teeth on her own, but still needed help getting her tooth brush and toothpaste. We figured out quickly that the Sonicare tooth brushes worked best for her. Due to her limited arm strength they allowed her to thoroughly clean her teeth even though she could not brush like someone without an SCI. To hold her tooth brush, she used and adaptive hand brace that would wrap around the tooth brush and would hold it for her.

At this point we are ready to finally start the day, which included getting medications, a tea, and maybe cook breakfast. Over time we did learn that she was able to get her medication herself with the use of a large pill dispenser, but it was trial and error until we found one that worked for her.

As the day went on I would have to empty her leg bag, which was connected to her suprapubic catheter. This is very similar to a Foley Catheter but instead of being placed in the urethra it is placed in a small hole that is created in the pubis area and goes directly into the bladder. Again, depending on the injury site, this might or might not be something that you have to deal with. Other options for people is to self cath if their bladder is able to hold urine and they are able to sense the feeling of a full bladder. Along with the emptying of urinary bags during the day there is the issue of catheter changes and care that needs to be considered frequently. We would change the catheter about every two weeks, or with any sign of possible infection. This included foul smell, redness of the site, foul smelling urine. Again this was key in keeping risk of urinary tract infections low, however they will always be a problem with long term catheter use. We also used the Rusch Antibacterial catheters, which cut down the frequency of her UTI’s.

Other things that were included in her daily care, was showers and her bowel program. This was done every other day and on average took an hour and a half to two hours. This included getting her from her normal electric wheel chair and into her shower chair, which is a PVC chair with a mesh back and an opening in the seat so her bowel program could be bone. By now you are wondering what a bowel program is, and its just like it sounds it was what was needed for her to have a bowel movement. Once in the shower chair, I placed a bucket under the chair that was filled with water. I would then use Fleet liquid glycerin suppositories to stimulate her bowels to have a bowel movement. This part would take about an hour on average. Once that part was done, I would clean up and then start her shower. Due to her lack of mobility and not being able to bend over. I would do all her shaving that she required, wash the parts she could not reach of her body and also wash and condition her hair. Once that was done it was the normal dry off and get dressed all over again and get her back in her electric chair and clean up. On shower days this would eat up a lot of time in the day.

Threw out the day numerous small things would come up, that help would be needed with due to the limited mobility and strength, I wont get into those here because they are really very minor.

Some of the things that are making huge changes in the life of people with SCI’s are the options for home automization that are on the market today. My home was based on the Amazon Echo, and the Echo dots. We also used the Nest thermostat, which was connected to the Echo so it controlled either from the echo or the nest app on her Iphone. This would be one of the biggest recommendations I can make to someone when dealing with a new SCI. The options today for home automization can make a huge difference in the daily life of a person living with a spinal cord injury. Because as I found out, unless you remodel your home, most homes built today are not with someone who is wheelchair bound in mind. Light switches are not in reach, counters are too high, doors can not be locked due to limited mobility of the hands.

This was the life at home, but I bet your wondering what we did to leave the house. Well when we first started dating she would use a manual wheel chair that I would place in the bed of my truck, and towards the end I had a large rack that we had build that was placed on the back of my truck that would allow me to load up the electric wheel chair and bring it with us. This did allow her more freedom when we were out in public. I never purchased a wheel chair van, which would have allowed her to stay in her chair and ride up the ramp to get inside the van. For us I would lift her into the truck and then load whatever chair we were using. This again could be an issue for some just like getting out of bed, because a Hoyer Lift would not be able to be used in this situation and if the person is not able to transfer themselves they will have to be transferred. For me I also found it easier to transfer her into a larger and higher vehicle than something smaller like a small SUV or a car. But this is what worked for me and might be difficult for someone else.

Now that you are out of the house and going about your day what are some things that that you need to be thinking about? Well besides all the things that can go wrong with a catheter that can not be addressed in public, you will need to remember medications that they are taking, hand braces or any adaptive equipment that they will need to eat or get through the day. I kept a bag that was full of all the extra things that we needed to get through the day. Also, you need to keep in mind what the weather will be like. A person with a SCI, can not regulate their temperature like you and me, and this can become an issue if it is too hot or cold. Living in Florida, it was almost always too hot and becoming over heated was a everyday concern. This was an issue that would come up quickly and once it happens the day was over and she had to be cooled down as quickly as possible.

Another thing that you will learn is that most stores and business are not set up for a person in a wheel chair, it will frustrate you but unfortunately you will have to live with this. Yes there is the ADA rules but they only cover the basics and you will see this quickly. But like everything you will have to learn what works for you in these situations.

So this was my day, and only included some of the major things that were included in my day. Along with these things, I also maintained the house and took care of our kids. There was laundry to do and meals to be cooked, yard work to be done and groceries to get. This was a full-time job on top of my fulltime job. I was on my feet from the time I got up to the time I finally got to sleep. It was hard and it was frustrating at times. Your going to get angry, and fed up and want to quit at times. My best advice to you is find a way to make time for yourself and make that a priority. I know it sounds mean, but you can not provide the care they need day in and out if you do not take care of yourself. Being the person who is responsible for so much is taxing both physically but also emotionally and if you do not keep your well being a priority you will burn yourself out. Reach out to support groups, because while the situation might be different you are not the only person providing fulltime care to a loved one. Keep in contact with friends and spend time with them, keep your hobbies or find new ones. I can not stress these things enough. I hope this helps you in these trying times as you adjust to you new life as a care taker. And just remember that you can do anything that you did before, it just might take a little more planning than in the past.