Let me preface this with saying I am extremely grateful that my husband is out of the hospital and home. My heart was filled with joy on Christmas Day, this is all I needed. We’ve had some pleasant days, some good moments in most days. But then reality hits.
Despite all of our efforts over the past week, so much is still out of our control. The C. diff, such a nasty gastro intestinal infection, would be difficult for anyone. The abdominal pain is excruciating and the result of the pain would be hard to live with in an ambulatory person, let alone someone wheelchair bound. He has very little strength. I have never seen him so weak.
Just to try and sit up in bed or better yet lie done. He cannot do it alone. His legs are so swollen and heavy from edema; they are weeping puddles of water. His upper body strength which used to compensate for lack of legs is nearly gone. Once he strains to transfer from chair to bed, usually an easy maneuver, he needs me to lift his legs one at a time and put them on the bed. Getting up is practically a gym work out for him; I can do little to assist here.
After a few days of the home health treating the wounds on his legs and not addressing the cause, I called the nephrologists today. It’s not my first rodeo. His instructions upon discharge were to eliminate the water pills he normally takes. By mid week he had water blisters soaking the gauze dressing the nurses put on. This new doctor is good, really good. He called back nearly immediately and after our discussion my husband is back on the max dose of furosimide until the swelling and weeping subside.
A few weeks ago, @bobmarcotte, who cares for his wife, compared aspects of caregiving to combat. Building on his excellent analogy, my husband and I are both suffering from combat fatigue. Entirely too many battles this past year. He naps a lot and is unable to resume any of his daily activities except for cooking. I see him out on the porch staring at our two new porch rockers waiting to be assembled. I watch and hear the discouragement he is feeling. It hurts me to the very depth of my soul that I cannot ease the pain, the recovery process.
In the meantime, thoughts run through my head. Thoughts that make me feel so very guilty. I am tired. Physically, mentally and emotionally exhausted. Will this ever end? I need a break; I need a haircut! I want to go check into a hotel with room service and massages and spend a night. A night without worry, a night with uninterrupted sleep.
I am humbled and embarrassed as I watch my husband in combat mode once again. So I put my big girl pants back on and get to work trying to keep him as comfortable as possible as he bravely fights yet another battle.
Yes, this is where I want to be. This is what I want to do. I choose him each and every time.