I never realized I was becoming a caregiver. My fiance a L4-5 paraplegic and I have been together a year now. He is my rock, a wonderful, funny, strong and independent man. We always have open and honest communication and have achieved a good balance in our relationship as sometimes I need my quiet time for reading, yoga, etc, and he needs his space for sports, guy stuff, and the cooking and cleaning he enjoys.
Three months after he moved in with me as we were adjusting to living with each other, making my place accessible, planning to get hand controls for my car so he could get out and about more, and planning for this years holidays, he had a flare up. Severe neck pain from a fall two years ago returned. At the time a surgeon in his home town had tried every test and conservative treatment yet refused to operate. He had lost all use of his hands and arms from he fall but did a month of inpatient rehab, worked, struggled hard, and got some use back.
Now he was in agony again, with a loss of sensation and shooting pains – including in his legs which he hadn’t “felt” since his initial spinal cord injury in 2002. He dropped everything he touched. Even a plate was too much weight. This from a man who worked out with 40 lb free weights every morning prior to that.
Overnight, the man who did all the cooking, cleaning, his own showering, etc and who loved to pamper me, and oh so please me intimately, was literally stuck in bed except for trips to the bathroom. No more movies out, the laughter dimmed as his pain increased, and our dynamic changed.
Having worked in the medical field I have never advocated for a spouse to be a primary caregiver for many reasons. Not because I was unwilling to do the work, but rather to separate the roles. Was I the fiance/lover or the nurse? I have seen many couples struggle with that to the determent of their relationship. I have seen many caregivers burnout. And the one they are caring for get frustrated with the caregiver/partner for being able to do things they no longer can do – even in a short term situation.
We waited a long six weeks to get in to see a surgeon. In that time I was very surprised how rapidly his condition deteriorated. I later learned for every day spent in bed it takes approximately three days to get the function back. And that is before adding in the toll surgery takes and the rehab required after that. I love this man deeply and knew I did not want to lose him or make him feel badly because of something outside his control, but I didn’t know what to do.
I realize anyone’s life can change on a dime and we aren’t guaranteed anything, but we were having so much joy making a life then… snap. I knew whining wouldn’t help and I’m not a whiner. I wanted my man to know he was loved, that I do care for him and that he was still my knight in shining armor, yet I was wearing down. I started to panic because we weren’t even post op yet and I was exhausted mentally and physically as a carer.
I also noticed that I suddenly had no “alone” time. We weren’t sleeping due to his pain, he was basically glued to the TV just trying to ride the pain out, and I was getting snappish. Cognitively I knew none of this was his fault, he didn’t want to be in this situation, relying on me for everything any more than I did, and yet here we were with no one to understand or talk to about what was happening, me becoming a caregiver. He was new to the area with no friends of his own yet and I didn’t feel “right” about discussing what we were going through with friends. I looked for an online carer support group but most seemed to want money or were geared toward specific conditions or the elderly. I was trying to anticipate and be proactive rather than reactive, but it didn’t appear services were in place for this to happen.
Carer Burnout Setting In
One day I felt exhausted from a long night of tossing and turning and then I heard the TV next to me start up and I wanted to scream, “can I please please have just a moment to myself to wake up, gather my wits, and be “me” before I immediately have to turn you, get your medications, get your breakfast, shower, lift you, etc etc.” He’s is over 150 lbs heavier than me. I suddenly felt as if I was losing myself. What made “me”, “me” ( selfish of me I know).
I scrambled through the caregiver morning routine, ran to the grocery, only to have him call with a question about something he saw on a TV show that confused him and I had only been away a mere 10 minutes. My cell rang and again I panicked, thinking he had fallen, only to be asked a question about a TV show! I thought, “couldn’t this have waited”. He asked where I was, I said in the checkout line… It felt as if he was checking up on me.
We have always been very open and honest with each other and great at communicating so I was shocked to realize I had become afraid to mention how I felt. It left me feeling a terribly selfish, weak person for wanting some sleep, wanting to read a book, wanting to have some silence in the house without the TV continually blaring what I consider “mindless” TV. On one level I knew given the pain medications he was taking TV was probably the only thing he could focus on. Rationally, I knew that I did, but I noticed I was snapping and acting like a shrew. Which isn’t like me and I sure didn’t want to lose this man or ruin what we have.
The irrational part of me just wanted a break from being the carer. I was tired, tired of managing medications, managing doctors appointments, getting prescriptions, doing all the tasks around the house, bathing him and so on. It felt as if every time I sat down he would say, “can I have this, can you get that.” I knew I was becoming selfish. Started wondering if I was enabling him not to do things. My thought patterns just weren’t linear. I finally snapped and said, “did you notice I just sat down and was going to read, just for a minute, silently.” It didn’t work, as I opened the book and he began to talk. Probably more the pain medications than anything but my one single moment of peace in weeks was gone.
Finding The Balance
We tried to talk it out before surgery, but the doctor wouldn’t give us any information at all about what to expect post op so I tried online research about post op care but most was geared toward an able bodied person having a cervical fusion C5-7 and not an L4-5 paraplegic. I realize it sounds like minor surgery but at the time it felt like a big one. Mostly because we were both frustrated tired and ready for improvement. We communicated, determined he would need his rest post op, and I would need mine for when he came home. I thought, a ha, problem solved.
Immediately post op, I discussed safety issues with the surgeon. I knew that with a fusion an able bodied person would need high protein for the fusion to heal, would have limits on lifting, etc.. so how did that play in when you are lifting yourself for mobility? I asked the doctor to make sure his transfers were safe before sending him home. I advocated for them to evaluate his strengths and weaknesses after the surgery to develop a plan of care prior to discharge so I could have everything ready. Hoping to have a smooth sail back into our happy intimate relationship so we could move forward pain free. With more mobility and sensation for him.
His post-op pain was intense for weeks, continual 9-10, his neck swelled so he could only tolerate liquids. His neck collar became the bane of his existence as he couldn’t shower – much less transfer into a shower, and his functional level was determined to be T12. His bladder went into spasms so he had to begin self catheterizing, something he did not have to do before. It became one incidental finding after another. We tried to laugh, hold each other, and remain a kind, loving, grateful couple.
The Gentle Approach
They moved us to the rehab floor and I was allowed to stay overnight. I was also required to participate in his rehab as a team approach, which I thought was wonderful as I would be able to learn how to move him safely. Learn range of motion exercises I should have been doing all along and be an integral part of his rehab. The problem once again became how to get any rest when in PT/OT/RT class all day. Taking to the P.hD (he’s a funny story unto himself. Especially his perceptions of intimacy for people with SCI and their partners – to think he counsels new SCI patients scares me). Running home to do our laundry as he went through many outfits per day while his bowels and bladder adjusted. Managing my meals, continuing my search for employment, all the while not sleeping as he was unable to get more than a half hours rest at a time, which might total two hours a night.
Once again I was trying to appear upbeat and chipper but he could see it was wearing on me and knew neither of us had rebounded yet from how tired we were before we even got to the surgery. He began to feel he was a “pain” to me, to feel guilty he couldn’t do more, to beat himself up for things outside of his control and to notice I had no “me time”. Unfortunately the no “me time” may go on for an extended periods even after discharge home. So at this point we really need a balance. I do not want to become a snappish person once we are solely one on one again. All I can think of now is communicate, communicate, communicate but I’m not sure that is the entire solution.
He’s now working with a 1 lb weight vs. 40 lbs, has restrictions of no bending, lifting, twisting, will wear the hard collar at least 12 weeks, etc. Some days it feels like three steps forward and five steps back. Today they told us they will watch him transfer into my car tomorrow and practice that. The team from OT/PT is to come to our home on Wednesday to advise on grab bars, toilet commode and anything else they feel we need. Thursday is a holiday in the US but they want us to spend the night in the “apartment” on the rehab floor to see how we do and discharge home Friday. Somehow assuming elves will get the equipment to make the place accessible and install it all. Medicare/medicaid won’t reimburse for grab bars etc.
We are sleep deprived, pain is not controlled, and we have been told he won’t get back functionally where he was before the surgery. I will need to stay close by and they may get health care in once or twice a week and OT/PT in once a week. I love this man more than anything in the world and I do not want to jeopardize our relationship or make him feel bad for things he can’t control. I don’t want to whine but am I wrong for wanting some quiet time, alone time for me? Would anyone be interested in sharing thoughts, ways to help each other, a place to vent?