Pressure ulcers (also known as pressure sores, decubitus ulcers, and bedsores) are localized damage to the skin and/or underlying tissue that usually develop over a bony area on the body as a result of unrelieved pressure. The most common sites for people living with paralysis are the skin over the sacrum, coccyx, heels or the hips but they can sometimes develop on the elbows, knees, and ankles.
There is a high risk for people living with paralysis to develop skin problems. Limited mobility along with minimal or even no sensation can lead to pressure sores.
To anyone who is not the caregiver for someone living with paralysis, the idea of whole-body skin care might seem strange. But if you have been part of the paralysis world for any amount of time you have most certainly been told about the necessity of protecting the skin of an individual living with paralysis. We learned about skin safety the hard way, but never the less, we learned a lesson that has stuck with us for 7 years.
My husband Bill spent 31 days in the ICU after suffering his spinal cord injury. I was there most of the daylight hours almost every single one of those days. I witnessed the nurses coming in and turning him every few hours. I saw them put pillows between his lifeless legs and feet to be sure they weren’t pressing into each other. However, no amount of turning and pillows could make up for the extreme loss of 40 lbs. over that 31 days in a man who didn’t have even 10lbs to lose.
The most important factor that was overlooked somehow by the ICU doctors, nurses and staff was the fact that my paralyzed husband who had no movement below his chest was on a regular standard issued hospital mattress. Jump ahead 7 years, when I read stories like ours now, I gasp and ask myself how any ICU could keep a paralyzed man with such rapid weight loss on a standard-issue hospital mattress.
On day 31 of being in the ICU, the morning nurse changed Bill’s sheets and as she turned him to do so, she saw it. The dreaded pressure sore on his coccyx. The new vocabulary word that was introduced to my world was one that brought months of challenges, frustrations, tears, and depression...for both of us.
Day 31 in the ICU thankfully turned into day 1 at the rehab hospital. When we arrived at the rehab hospital the nurse who checked us into his room showed us the no air loss pressure changing air mattress controls and how to work them. I asked her why he needed this kind of mattress. She looked at me like I must be crazy, like how did I not know about this mattress already. She explained that he needed this bed because he is not able to move his body and the changing air pockets help relieve pressure on his skin. So, I asked her why he wasn’t on one of those air mattresses in the ICU for 31 days and she could not believe what I had just told her.
I truly had no idea. Of course, now I know that every single person who has a spinal cord injury and is unable to move their body needs to be on a pressure changing air mattress to prevent pressure sores from forming. I would have paid good money for that piece of information when Bill first got hurt. I had no clue about spinal cord injuries, pressure sores or about a hundred other things that I have learned over the past 7 years. The sad thing is the doctors, nurses, and staff in the ICU should have known. But that is an entirely different blog post.
If you are reading this and your loved one is newly injured and still in the hospital, demand (I mean make the biggest stink you possibly can until they listen to you and don’t take no for an answer!) that they are put on a pressure changing air mattress immediately. Bill has been on a pressure changing mattress or mattress topper every day since he arrived at rehab over 7 years ago and he has not had a single pressure sore since. The great thing about the mattress topper we use is that is can be easily packed up and taken on vacation with you when you travel. We have my husband’s on top of a regular mattress and it works great. Here’s a link to the one we use if you are interested.
Dealing with a pressure sore from the very start of his recovery was not ideal, but it did force us to learn a lesson that we have taken to heart and therefore helped us prevent additional pressure sores. Let me share with you some of the ways that we have learned to prevent pressure sores as well as some important things you can try to help them heal once they develop.
It is so much easier to prevent a pressure sore than it is to treat one. The first and most important preventative measure is the pressure changing air mattress. Next would be turning regularly while in bed. In the hospital, this should be done by nurses but once you are home, this becomes the caregiver’s job. I remember when Bill got home, we would wake up every 3 hours and turn him, even with a pressure changing mattress. When a person is newly injured their skin is especially susceptible to pressure sores. While Bill’s skin is definitely tougher now that he has put back on the weight he lost, he still has to be very careful. He learned how to do pressure releases in his wheelchair. Using his push rims with his chair locked he lifts his body up off the seat and holds it for a few seconds. He also leans from side to side in his wheelchair which has a special seat cushion that allows air to flow from chamber to chamber. When he simply moves back and forth on the cushion, the pressure changes. Good nutrition, drinking plenty of water and exercise like standing if possible (my husband stands in his standing frame daily for 45mins to an hour) are also great ways to help prevent pressure sores by encouraging good circulation and plenty of nutrients that the skin needs to be well.
Trying to get a pressure sore to heal is something I wouldn’t wish on anyone. Often times a person living with paralysis can’t feel the discomfort that would warn an able body that a sore is forming. Once that sore appears, the person still can’t feel it, but the caregiver can see the effects of the sore. Pressure sores start from the inside so, by the time you see them on the surface, there is already some major damage underneath. They like to form tunnels that make cleaning and packing them challenging and just gross. The smell that can emanate from an infected pressure sore will burn your eyes and trigger your gag reflex. They can take months to heal even if you do everything the wound doctor tells you to do.
Here are some things that might help speed up the healing process. Consume a lot of protein! I make my hubby protein shakes every morning, even 7 years later. The protein we use also has collagen which is really great for skin so it’s a win-win to have both helpful ingredients in one great product. I have included the link to both the protein powders that we use. I personally use the multi collagen in my coffee each morning because let’s face it, I need both coffee and collagen for my not-as-young-as-it-once-was skin. I am not a smoothie drinker or really even a breakfast eater, so being able to add this product to my morning coffee makes getting protein and collagen into my body easy. I am a super picky coffee drinker so the fact that I can add it to my morning joe without interrupting my coffee experience is really saying a lot about the quality of this product. Also important for healing is regular visits to a wound care doc and following their instructions, and most importantly (and often the hardest one to make happen) stay off the wound!
It is so important to stay off the wound because every time you sit or lay on a pressure sore you prevent blood from getting to the sore. Without blood flow to the damaged area the body can’t heal the sore and not only will it not heal, but it will also get worse, possibly going to the bone and even causing sepsis.
In talking with other caregivers, the number one frustration they have with their patient is keeping them off the sore. The person they are caring for that has a pressure sore refuses to stay off of it. Caregivers say that the person in their care can’t feel or see the sore so they don’t worry about it. Then the burden falls solely on the caregiver who is having to clean, pack and change dressings on the wound daily as well as deal with the horrible smell and oozing that can come from an infected sore. Unfortunately, if the patient refuses to follow the doctor’s orders to stay off of the sore, it will get to the point that hospitalization and even surgery are the only options to get it to heal.
Pressure sores are very preventable if the proper precautions are taken. Here is a video about skin care that has some great tips for caregivers and would also be great to show an individual living with paralysis that doesn’t quite understand how important it is to take care of their skin.
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