I apologize for waiting a full week before posting something new. But, as John Lennon wrote, "Life's what happens to you when you're busy making other plans." And life has certainly been happening a lot around me lately.
In the interest of full disclosure, I should let you know that Jeanne was in the hospital (UCLA Medical Center) for 3 weeks until this past Thursday, 8/16. She had become very symptomatic, and when her breathing became a bit labored, I contacted one of her doctors and they suggested I take her to the emergency room. It was determined that Jeanne was suffering from a very serious infection and she was admitted to the hospital. In treating her infection, doctors gave her such high doses of a very potent antibiotic (vancomycin) that she lost most of her kidney function and she eventually became non-responsive (how's that for being euphemistic?). Just to make sure she had our attention, she proceeded to suffer a seizure.
After about 10 days in the hospital, Jeanne opened her eyes. By then she had a NG tube down her throat, 3 IV lines, leads going to and from her heart and a partridge in a...but, I digress. By this time, she had also added "hospital-aquired pneumonia" to her list of ailments. Another 10 days of treatment seemed to tame the pneumonia, and her kidney function continued to return to her. Meanwhile, Jeanne's white cell count indicated that the original infection that hospitalized her seemed to be getting better
When Jeanne's doctors began planning her discharge, they talked to me about putting her in a skilled nursing facility, as she still required a significant amount of care (3 antibiotics to be given by IV, blood to be drawn every few days, etc). One of my long-standing promises to Jeanne has been that I would not allow her to be placed in a nursing facility. No judgement here...just something she asked of me and I agreed to many years ago. I convinced Jeanne's doctors that she could be discharged to our home -- provided I created a clinic-like environment. So in came the hospital bed, IV stand, suction device, cases and cases of supplies...and a registered nurse that would be visiting every day to augment the care that Jeanne was receiving during the day by our full-time caregiver (a "Certified Nurse's Assistant") and at night by yours truly.
If you think it's taken a long time to read through this description of how things are at our house, believe me when I tell you that living through it is a million times more complicated than reading through it. And that's where I am right now. Living through a situation that's so far from ideal on so many different levels that it makes my head spin. The anxiety that I thought I was dealing with while Jeanne was hospitalized? That was just a short coming attraction of the main event that I'm dealing with now. Defining my role as Jeanne's caregiver? Trying to manage my desire to give her everything she needs while remembering not to burn myself out in the process? I'm still not very good at that. Waking up from a night's sleep feeling more exhausted than I did when I closed my eyes? It's become a daily occurance.
The good news? I'm learning what faith and friendship really mean. And to those of you who know me and Jeanne...who continue to selflessly demonstrate one or both of these all too elusive qualities that helps define our very humanity...I can never say "thank you" enough.
So that's my story tonight...but everyone has a story. What's yours? When have your limits as a caregiver been tested, and where did you reach down to get whatever it was that let you keep going one more day?
Dear Jon,
I read with interest your "blog", and wish you well with the wonderful care you are giving you wife. In a different way I loved and cared for my wife throughout the time she was at home and continue to love and care now as she stays in a skilled nursing facility.
My wife Carol was first diagnosed with MS some thirty years ago and as a caregiver I have been through many challenges, and "survived".
My offer to the "blog" is to (in future comments as I am presently limited for time)to share how a caregiver may keep on going when all seems to be against you.
I can offer little to the medical care of the patient as medication was not available when we needed it most.
Sincerely
Roy
Posted by: Roy walford | August 30, 2007 at 12:45 PM