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Hearing aids or just one more risk factor acknowledged

February 5, 2014

I sometimes think we should have been an advertisement for Lewy Body Dementia identification.  Honestly, my hubby has so many of the risk factors or early indicators including such things as REM sleep disturbances that I think we should be poster children for Lewy Body Dementia!  Over 10 years ago (maybe closer to 15 years ago), I began to notice him talking more in his sleep and at one time he flew out of bed while “catching a basketball” in his sleep.  High cholesterol had been a problem, he has had almost no sense of smell for years, he has had problems with depression and anxiety for years and a bevy of relatives on both sides of his family with diseases in the same spectrum (Parkinson’s, Restless Leg Syndrome, Alzheimer’s Disease). In addition, although he has never had a visual hallucination, he has often heard things that no one else heard (barking dog, rock and roll music) which is called an auditory hallucination.  For the past several years our daughters and I have complained that he couldn’t hear well.  The TV was always louder than we found comfortable and he seemed to be uncomfortable understanding conversations in crowded venues.  I finally convinced him that he should see an audiologist.  Yes…you guessed it.  His hearing was below normal in every single tone from the lowest to the highest in both ears.  Hearing aids ordered (ouch $5200) but well worth it if we can listen to the television at a normal volume and he can visit with others in a crowded restaurant.  And yes, you guessed it.  For some reason dementia patients have a history of hearing loss.  The connection?  Unknown, but it has been studied and identified as putting a person at higher risk for dementia.

So what are we doing these days to keep our life meaningful and to hold Mr. Lewy at bay?  It takes a lot of work….physical therapy 2-3 times a week and on ALL other days we go through the entire exercise program ourselves.  Limiting situations which increase anxiety.  We find that most people have problems understanding how anxiety exacerbates the symptoms of Lewy Body.  If you can’t understand, simply be willing to take my word for it.  An anxiety producing situation brings a deteriorating ability to find words, participate in conversations and think clearly.  What is an anxiety producing situation?  It can be any situation where he finds himself “put on the spot”….having to simply order off a menu can be difficult if it is an unfamiliar restaurant.  Even family members can sometimes be anxiety producing if they have a history of critical or unkind behavior towards him.  Trying to eat healthier….always….and he does love sweets.  I try to always offer apples and oranges and limit the M and M’s and cookies. Reminding him to stay hydrated, encouraging him to work on puzzles designed for patients with dementia, making sure bedtime is a ritual.  Warm shower, light snack, quiet conversation, cool bedroom.   

Comfortable clothing, temperatures comfortable….turn up the heat or the fireplace is his hands are cool or turn on the air conditioning if he is too warm…..temperature regulation is one of those problems that often accompany folks with Lewy Body Dementia and is considered a problem with autonomic function.   It is a constant job for the caregiver.  Anticipate, be ready to improvise, try to be ready for any situation. Carry extra things you may want with you in the car anytime you are more than a mile or two from home.  Medications, snacks, water, paper towels, garbage bags.   We have bought the deluxe walker that we will probably need at some time in the future…..we have created a safety zone on his side of the bed which will allow him to fall out of bed and not hit any sharp edges. And now each morning I help him put on his hearing aids and each evening at bedtime, I take them out for him and clean them as his fine motor skills no longer allow him to work with such tiny brushes and wires. 

All these things being said, it seems we are muddling along quite well.  He tells me that he thinks about his death every day….wondering when he will slip down over the ledge and be unable to get back to me.  He is very aware of his cognitive decline and the need to stay active and engaged.  He knows that the day will come when he will no longer be conversant and mobile.  He hates the thought of being dependent on me or others, so he fights the cruel hitchhiker, Mr. Lewy along with me.  Each hour, each day, each week, each month we continue to push Mr. Lewy back.  It is exhausting at times…..just anticipating the future.  But although it is part of our life and we need to be constantly vigilant, we can’t allow it to be our only focus.  Our grandchildren, our children, friends, our faith, our relationship with each other, these are the things that mean the most to us. We must focus on maintaining and enjoying these things as well.  For life is not meant to be a sour lemon, but rather to be the sweet nectar of the lemonade that we make with those lemons.

We encourage you to evaluate your risks and change those things you can.  And more than anything else, enjoy your relationships and count your blessings.  Make lemonade out of the lemons life hands to you.  Be well and enjoy life whatever your situation.

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  1. Susan Mazique permalink

    I always marvel at your courage, but this time you made me see things from Gary’s viewpoint. You two are an example to all of us!!!!

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