Not so Foot Loose these days–A Journey into and out of Normal Pressure Hydrocephalus

I started this blog to celebrate my freedom to travel, to set my own schedule, to see the world and my own backyard at my own pace, with minimum encumbrance of outside responsibilities.  To be sure, I still had responsibilities–but I could plan my travels around them and hire help to manage them while I was gone.

All that changed a year ago–just as I was starting this blog, in fact–but I didn’t know it at the time.  Literally as Hubby and I were boarding a plane to visit the wandering daughter in New Zealand, we learned that Mom had fallen in the middle of the night in her home.  She was in the hospital, banged up and bruised, with a dislocated shoulder and a stretched nerve that deprived her of the use of her left arm and hand.  We consulted by phone and FaceTime with Mom, my nieces who were with her, and my brothers, all of whom encouraged us to continue with our trip, as Mom was safe and being well cared for.

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~Mom was banged and bruised but in good spirits–this made it much easier for me to travel~

We had a great trip to New Zealand and a fun visit with the wandering daughter, complete with lots of FaceTime and phone calls with Mom and other family members.  As soon as I got home, I organized my affairs for the short term, and flew off to be with Mom.

By that time, nearly a month after the fall, she was in rehab in a nursing facility.  It really looked like things were improving over the next couple months.  She regained the full use of her left arm and hand, the bruises on her face and shoulder faded away, and she moved into an assisted living facility where she continued with rehab and therapy.  I found myself spending about 1 week a month with her, managing her house and her bills, taking her out for visits with friends and back to her house.  She even started to play the piano again.

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~Mom went to Ft. Indiantown Gap for the burial ceremony for a friend.  It was one of her better days at the beginning of the back-slide~~

About four months into her recovery, she stopped recovering and started back-sliding.  At first it was slow and almost imperceptible.  She was less stable in her walking, had more difficulty with writing and memory, and became less able to manage her own affairs.  She spent three days in the hospital with a raging infection.  By eight months after the initial fall, she was using a walker, could barely write her own name to sign a check, and could not remember day to day activities.  She had frequent minor falls, and was increasing less stable, less mobile, less balanced and more incontinent.  By ten months after the fall, she was in a wheelchair and back in the nursing facility, struggling to remember where she was, barely able to walk the few steps from her wheelchair to the bathroom, and unable to manage even basic personal hygiene by herself.

It all happened so fast.  It was so hard to believe that only 18 months before, she had traveled with me to the Outer Hebrides of Scotland, and been hiking (well, sort of).

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~Mom at the Callanish Stones on the Isle of Lewis, Outer Hebrides, Scotland, just 18 months earlier~

Her primary care physician suggested seeing a neurologist, and even gave us a tentative diagnosis–normal pressure hydrocephalus (NPH)–essentially water on the brain.  We scheduled an MRI; one neurosurgeon looked at the images and said that wasn’t her problem–she was just declining as her brain atrophied.  My brothers all but gave up on Mom.  They talked about calling hospice, and one doctor suggested her prognosis could be measured in months.

We pressed on and got her into to see a neurologist, who ordered another battery of tests.  The results of the tests were positive in the sense that they pointed to the high likelihood of NPH, and we made an appointment with another neurosurgeon, who agreed with the tentative diagnosis based on the test results.  I spent half my time with her from month nine to month eleven, taking her to all the doctor’s appointments, and ultimately to a scheduled surgery to have a shunt installed in her brain, to drain the excess fluid.

In the process of all the tests, the surgery and her recovery, I learned a lot about NPH in older persons.  It affects 1 in 100 elderly, and is not diagnosed in about 80% of those people.  It’s symptoms–reduced mobility and stability, impaired memory, and incontinence–mimic Alzheimer’s disease and other forms of dementia, Parkinson’s disease, and other chronic neurological conditions of the elderly.  Unlike those other conditions, if promptly diagnosed and treated–with a brain shunt–the symptoms can be reversed.  The only way to know if a shunt will work is to install one.

In Mom’s case, the results were initially quite dramatic, at least to start with.  A day after the surgery, she was happy, alert, chipper, and ready to leave the hospital.  Literally 5 minutes before she was ready to walk out of the hospital, she crashed with an infection–trembling, vomiting, feverish, delirious, unable to walk, or even remember her own name–all in less than 20 minutes.  Needless to say, she stayed in the hospital.  Hubby and I thanked heaven that we were not in the car on the way home when that happened.

Mom is back at the nursing facility now, recovering both from the surgery itself and the sepsis she suffered in the hospital.  She is improving in all areas–cognitive, mobility and incontinence–although not as fast as we had hoped.  The doctors did say the improvement could be spread across 3-4 months, and we are not quite there yet.  I am still spending about one week a month with her, now managing all her bills and her house.

The upside to this adventure in healthcare has been that I have spent a lot of time with Mom, including Thanksgiving, Christmas, her birthday and my birthday.  I have spent a lot of time with Hubby as well, as he has been with me and Mom every step of the way.  I am a silver medallion frequent flyer, and I know my way around multiple airports pretty well these days.

As Mom gets better and needs less day to day attention, maybe I will get a chance to use all those frequent flyer miles, and resume my foot loose ways again.

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