The Diagnosis

“I don’t need to go to the doctor!  There is nothing wrong with me,” she spit the words out very emphatically. 

“But, Mom, you are seeing people that aren’t there, and this morning you didn’t recognize your own clothes.  Don’t you agree that’s odd,” I asked. 

My question was met with icy silence and blank eyes.  This was before I knew better than to confront her with the strangeness of her behaviors and before she was declared incompetent and moved into an Alzheimer’s unit in the senior community where she lived. 

She had just been released from the hospital where she was treated for dehydration… and tested for dementia at my request.  Mom had come for Christmas and something about her was very, very different.  After refusing to eat Christmas dinner, or anything else for that matter, she quickly became dehydrated and I took her to the ER.  While she was being admitted, I poured out my concerns to a charge nurse who suggested that it might be a good time to have her evaluated for memory loss.   

The week she was in the hospital was one of the most stressful in our already strained relationship.  Deep down, Mom knew that I knew she was having difficulty, but she was afraid to find out what we both suspected… that she might have dementia.  She repeated herself many times in the same conversation, could no longer read a calendar, and forgot how to make Jell-O.  Paranoia had taken over her usual sweet and kind disposition and she was convinced that I had added poison to her cereal bowl.   

Yes, Mom had a problem and spent the week in the hospital doing her best to prove her sanity while the doctors did their best to return her to physical wellbeing, all the while testing her for this kind and that kind of dementia.  After six very long days, the neurologist stood at the foot of her hospital bed and said, “You have more than ordinary memory loss for someone your age.  You have dementia,” he said as gently as he could.  She looked blankly back at him as he turned to me and said, “...and it will only get worse.”  He handed me the clipboard on which he had written the word “Alzheimer’s.”   

I flew with her back home to Texas where we met my sister.  The plane ride had been very quiet, as Mom refused to speak to me and sat as far away as the arm rest would allow.  Sister greeted us joyfully, putting on an overly happy face to gloss over the uncomfortable atmosphere.  It was soon evident that she had joined ranks with Mom in fighting the idea that this was anything but normal forgetfulness and only acquiesced to a follow-up doctor’s visit to prove me wrong.  They both discounted the diagnosis delivered by the hospital’s neurologist and chose to seek refuge in the gentle hands of Mom’s primary care physician.  I didn’t argue the point, happy that she had finally agreed to see a doctor.    

The primary care physician questioned Mom, who answered with great surety that the doctor in the hospital said the only thing wrong with her was her family.  My heart sank and my eyes burned to hear these words, but I said nothing as she quickly agreed to take a memory test.  A few minutes later, the test was scored and the kindly physician told her that she had mild cognitive impairment - a gentler way of saying, "You have dementia."  Mom’s eyes glazed over as the doctor told her to curtail her driving, hire a home healthcare aide, and consider letting a family member help her with paying bills.

Mom never went back to the doctor that she had been seeing for nearly twenty years and switched doctor's each time he or she even mentioned memory loss.  It was another two years before she had declined so severely that Sister – who could no longer ignore the symptoms – and I were able to quietly usher her into the office of a psychiatrist who diagnosed her with Alzheimer’s, Stage 6.

He signed the papers the next day declaring her incompetent and supported us wholeheartedly as we established a guardianship and moved her into an Alzheimer’s unit.  He wished that we had brought her to see him years before, as he believed that he could have helped make her life easier.   With proper treatment and care, Mom might have been spared the anguish of paranoia, wandering away from home and becoming lost, and the estrangement of her friends.

   

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Alzheimer’s is but one of over fifty different dementias, some of which are treatable and even reversible.  Dementia is an umbrella term for a group of symptoms and the importance of an exact diagnosis is crucial, as medications that are helpful for one type of dementia can make individuals with another dementia much worse.  Many medications and caregiving treatments are the same for all dementias, but there are a few critical differences that are important for the patient.

Diseases which can mistakenly fall under the term “dementia” include thyroid problems, side effects of medications, depression and some vitamin deficiencies, all of which are treatable or curable.  Other more serious dementias include Alzheimer’s, which has medications and therapies that can improve the quality of a patient’s life for a while; and vascular dementia, which can be slowed with the proper medications.            

While Alzheimer’s accounts for 70 percent of dementias, the remaining 30 percent are usually vascular dementia, Lewy body, alcoholic dementia, primary progressive aphasia, or frontotemporal lobe.  It is not uncommon for a patient to have mixed dementias at the same time, reinforcing the need for an accurate diagnosis.    

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A Bandaid for theCaregiver is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love. 

Journey with courage,
Elaine