My sister Nancy and I were born a mere 15 months apart but our lives evolved as if we were born on different planets. I took the road less traveled, writing and exploring the world and marrying into a different culture while Nancy took the more traditional route of marrying young, having two children – the requisite 3 years apart – and dedicating herself to her family above all else. She was smart, compassionate, loyal and supportive to her family and friends. I always admired – to be honest I was jealous – of that quality in my sister that attracted friendships. Everyone she met wanted to be her friend even from a very young age her company was always in demand. She was dedicated to her synagogue and spent years serving as a member on their board and after that, volunteering her services as secretary in the office.
We had had a difficult childhood losing our father at a young age and circumstances denied us the Jewish education that Nancy determined her kids should have, so when her son and his son became steeped in Judaism and followed the orthodox path she was absolutely delighted. She doted on both of her children and grandchildren and could always be counted on for wise, loving and supportive guidance without judgment… a true woman of valor.
Even though Nancy and I lived very different lives, we shared a loving bond and remained close. I visited her and her family frequently and was there through all the holidays and celebrations and yes even the sad times and so when she began to act a bit differently I just chalked it up to getting older. We laughingly complained to each other about memory loss and the curse of aging that brought so many physical and mental changes. We complained about hearing loss because it ran in our family and we both put off getting aids out of vanity for longer than was prudent. Sometimes when we would talk to each other we would lose words or forget why we went into a room and came back empty handed, but we laughed and chalked it up to getting O. L. D.
When she began to shuffle instead of picking up her feet when walking, I chalked it up to arthritis pain. When she began to complain that she didn’t have much to talk about and stopped reaching out to her many friends, I shrugged it off as a passing phase because she had recently lost two of her best friends and was grieving. When she didn’t notice her clothes were covered in food stains, I thought she just needed cataract surgery since she had always been a fastidious dresser. When she stopped cleaning her house, I just chalked it up to exhaustion from being a balaboosta for so many long years. And when she stopped cooking, I was shocked but applauded her taking a well-deserved break.
When she got confused and embarrassed about it, I did not correct her but changed the subject and complimented her on the things that were clear to her like driving directions. She always knew which direction to go in to reach our destination. She remembered birthdays and anniversaries. She knew the names of all of her nieces and nephews so I convinced myself a bit of confusion now and again was normal after all, I experienced it as well.
That was a big mistake! It finally hit me like a punch in the stomach when a family member called Nancy to say she had cooked her famous brisket for Passover and it was a big hit and Nancy didn’t remember having made her well-loved dish for 50 plus years nor that she had generously shared her recipe with all who asked for it. Out of fear and denial we watched my sister’s mental deterioration and even after finally visiting a neurologist for evaluation, nothing was done to address her diminished capacity for engaging in life’s normal activities. She was diagnosed with “mild dementia” told nothing can stop the progression and to come back periodically to be re-evaluated.
Amazingly, she managed to hold it together all during the move to assisted living – leaving her home of 50+ years – and the slow decline and death of her beloved husband of over 66 years. Tragically, the sudden unexpected death of her son shortly thereafter finally catapulted her over the edge and she suffered a series of mini-strokes that put the finishing touches on an already damaged brain.
She is now in the throes of full-blown dementia and it is frightening and painful to watch her struggle to pull words out of her scarred brain. Her frustration and fear tears my heart apart because at this stage I have been told that there is little that can be done to ease her anguish except massive doses of dulling medications.
I recently attended a presentation at Senior Source in Riverside Mall presented by ACT NOW Foundation, a dementia resource service in Bergen County and learned that every one of the behaviors we watched my sister go through over the years were classic examples of early stage dementia. I learned that “Dementia” is an umbrella term for many different forms of the disease, of which Alzheimer’s is only one, and that each form presents different symptoms that can be successfully treated once the type of the disease is diagnosed.
I am sharing this story so that if you, or one of your loved ones, exhibit any of these actions you should not “chalk” it up” out of fear and denial but reach out for early intervention. Currently, dementia cannot be cured but it can be delayed and the symptoms treated so you or your loved one can live a more fulfilling and less painful life. Perhaps in the future a cure will be found for this disease that affects so many families so tragically but for now early intervention is the best hope and no action is the worst action that you can take.
For information contact [email protected] or visit www.actnowfoundation.org
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