Many of us who are caregivers for someone with paralysis are also family members. In my case, I am the caregiver for my husband. As caregivers who are also family, we have a unique opportunity to assist our loved ones in situations where a hired caregiver might not have the privilege to do so.
If you are a caregiver who is also a family member, chances are pretty good that you were not a caregiver before your loved one was injured. Most of us learn about caregiving as it directly applies to our loved one which means we become experts in their care. If any of you have ever been with your loved one while they were in the hospital after their initial paralysis event, you know that being with them while they are in the hospital is crucial.
Doctors and nurses are experts at their job (for the most part) but they are by no means experts at dealing with your loved one’s specific paralysis and/or the great number of issues that come with that diagnosis. Early on I would trust medical staff 100% with my husband when he was in their care. Starting with inpatient rehab and continuing on to out patient rehab, neurologist, urologists, x-ray lab techs, etc. However, it didn’t take long before I started to realize that I was taking way too much for granted in assuming that all medical staff understood how to care for someone that is paralyzed from the chest down.
The turning point for me was the day I took my husband for an x-ray of his knee. The x-ray tech that came out to get him assured me that they could handle everything and I could just stay in the waiting room. Big mistake! This well-meaning tech had no idea what “paralyzed” meant. He figured my husband could bear weight and just need help making the turn from wheelchair to x-ray table. He nearly dropped my husband and ending up injuring his injured knee worse than when he got there. That day was a turning point for me. I will now no longer allow him to go through any medical procedure without me by his side. I get some push back at times but usually more from the “paper pushers” than the actual doctors and nurses.
My husband was recently in the hospital for 4 days undergoing some elective surgeries that make life a little easier for both of us. I was with him from the moment he checked in. The first stop after that was to get him changed into a gown.
The paper pusher didn’t want to let me go with him because no family was allowed past that point. I smiled sweetly and told her I would be accompanying my husband every step of the way until surgery for his safety and my peace of mind. She wasn’t happy with that reasoning but she at least stopped trying to get me to leave him and go to the waiting room.
I was with him for preop and help to get him turned on his side when pre-op was taking too long and his back side needed pressure relief. My number one goal was to make sure he did not develop a pressure sore during this stay (FYI…my efforts were successful!). I asked every nurse and doctor I spoke with to make sure he was on a pressure changing air mattress as soon as he left surgery (and he was).
I asked the surgeon to get me before my husband was taken to his recovery room and the doctor made sure that happened. I slept on the lovely bed provided in the hospital room every night. I was there to turn him on his side and get his pillows positioned just right before bed. I was there to help him get his teeth brushed while he was in bed. I was also there to make sure he was able to eat all of the “food” he was given post op. There is no way a single nurse in charge of 6 or so other patients could have provided the level of care and attention my husband needed while recovering from his surgery.
The nurses were more than happy to have me there and they were all truly appreciative of all I did to help my husband. My husband was truly appreciative that he felt as comfortable as possible while recovering in the hospital and my nerves were calm because I didn’t have to worry about anything going wrong.
If you are a caregiver that is also a family member, you are an amazing blessing to your loved one and invaluable to their safety and care on a daily basis. I hope you feel appreciated and loved for all that you do, and if you don’t, please hear me when I say, “You are an amazing person to selflessly serve your loved one at the sacrifice of your own comfort and preferences most of the time. Keep up the good work and know that what you are doing makes a difference and it is noticed…if not by any man, by God above.”
“Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.” Matthew 5:16
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