About Alzheimer's and Dementia: The Heart of Darkness

Tom and his brother

“The most beautiful experience we can have is mysterious.  It is the fundamental emotion which stands at the cradle of true art and science.”  (Albert Einstein)

I spent the last several weeks in my hometown, Peterborough, Ontario, where beautiful experiences occurred which Einstein might describe as mysterious.  I was visiting my brother, John, who lives in the heart of darkness called Alzheimer’s. We met often and regularly and naturally, given the affliction of Alzheimer’s, not everything was beautiful. But it was better than previous visits -- and I take what I can get with thanks.

He has been in three different care homes over the past months but neither his wife nor children were satisfied with the first two.  John was often depressed and angry but things are so much better now in his new location Centennial Place in Millbrook about 20 miles from Peterborough. I have heard that finding a good humane place is a bit like winning the lottery. Don’t quote me on that, but the family has lucked out. Centennial Place is great and the staff incredible.

My wife’s mother, Adeline, lived to age 103 and was also in several homes. Some were depressing. Residents spent their time sitting in halls staring at walls when we arrived and were still there hours later when we left. No mental stimulation and little even in the way of physical movement. What a downer. However, Adeline continued bright, alert, and cheerful right up to the end.  Reason:  My wife has three sisters living in Peterborough who were with her every day for years: morning, afternoon, and evening.  They took turns feeding, caring, reading and talking to her. It’s a kind of a dream situation.  Not easy to come by over a period of years, but a remarkably encouraging and almost mysterious indication of our potential for goodness. I think Einstein would agree.

Alzheimer’s disease and dementia are real problems in our aging society and they will worsen as baby boomers grow older. But it is not just a problem for the elderly.  Today some 71,000 Canadians under the age of 65 have dementia. The Alzheimer Society also reports more than 500,000 Canadians have dementia and that number steadily increases. Not much in the way of good news. Of course research studies are underway all over the globe so there is hope. However, I am not confident about a cure. There will be progress undoubtedly and we are definitely living longer -- but that just adds to the problem.  We’re not meant to live forever.

So where is the good news?  Well my brother is happier than he has been in a while. He and I really sang up a storm on several occasions at the Centennial. He’s often lost and doesn’t recognize friends, me, or his children. But he remembers song lyrics. I began bringing my guitar with me to see him, and as it turns out he remembered the words of an unbelievable number of songs including: “Wake Up  Little Susie,”  “Heartaches By the Number,”  “Did She Mention My Name,”  “Bye, Bye Love,” and  “Folsom Prison Blues.”  The list goes on, and he wasn’t just filling in occasionally -- he had the words down pat and clapped hands in perfect rhythm. He caused a bit of a sensation with the Centennial Staff and on several occasions they asked me to return and sing with John in a “Centennial Has Talent” show they are planning. 

How amazing and mysterious it seems. He doesn’t know who I am, and probably doesn’t even know he has a brother. He doesn’t know where he is or how to find his room, but somewhere in his brain he has this incredible storage of lyrics that he draws on rather easily and improves singing rapidly with a little practice and repetition.

It is sometimes a little sad but there are sweet precious memories too. One day in his room he observed, “It’s nice here.  I’m so glad they didn’t put me in a home.”  Our conversation is limited but we have fun singing. It is really special although sometimes it’s hard to stop him.  But then again, why should I want to.  No one is complaining. So far.

With prompting, John can draw on songs he once knew well. To repeat he does not know me as his brother and at times sees me as one of the Centennial staff. But – and this is important – somewhere in his mind there are implicit memories of me as someone he knows, likes, loves, trusts.  Someone he wants to stay, walk, talk, and sing with. When parting we hug and he tears up and always says he loves me. He doesn’t know I’m his brother but he does not hug the staff nor tell them he loves them when they’re leaving.

I count my blessings.

Written by Tom Cavanagh pictured right, with his brother, John.  A bit more about Tom: I taught at all levels and retired as a college dean in the nineties.  I write and play the guitar and have worked in ten different countries including Russia, Bolivia, Armenia, Sri Lanka,  and six years in Africa. Rosemary and I celebrated our fiftieth wedding anniversary a couple of years ago with our five children, grandchildren and others.  Some days I feel so lucky I fear I may get arrested.

Comments

I was delighted to read Tom Cavanagh, as it supports the immense wellness factor  that  music provides as we age, especially for people suffering from dementia. I recently retired after many years in long term care working in many roles from educator, director of resident care and finally as executive director of a state of the  art   long term care facility with specialized Alzheimers bungalows.  In those years,  it became very clear that music, especially live performance captured the imagination of people  with dementia.  Residents  who were so isolated in their illness would light up with a smile and many would sing every lyric for  the tunes the recognized. Residents who lost the ability to speak would move whatever part of their body they were able in an effort to  stay in  time with the music. Often it was little movements of the fingers tapping or the head bobbing,  it was a always a truly beautiful to experience to watch.  For family members it gave a sense of relief that the person they knew, even if that  person didn't recognize them or know their own name the person they love was in there somewhere.  These event also bring back family memories, as well as help ensure families that care providers do know how to provide appropriate social activity  in a very respectful  way.I  learned so much from residents with dementia and their families during my long and wonderful career.   My return gift now that  I have retired is to bring live performances by professionally trained musicians  to our residents isolated in nursing homes.   I have  been involved with the Health Arts Society for a year now, as the Executive & Artsistic Director of the Health Arts Society of Atlantic Canada. We are not for profit, chartitable organization.  I have organized performances in 30 long term care homes across Atlantic Canada working with musicians  from each of the Atlantic provinces  symphony orchestra.  Each experience continues to support the need for consistent  live music programming  in long term care.  The reationship that develops between the residents and musicians  is part of the tremendous social fabric of this  kind of programming.  Instead of just putting my feet up in my retirement years, I'm doing this because we all know as we age that  it may be us in a nursing home.  I do not want to have only my radio turned on or to be plugged into whatever device is on the market at the time. While all these options are fine, I would still be alone, and if, I have dementia I will most likely pull off headsets or become  upset because I don't know where the sound is coming from.  Therefore, we must do eveything we can to ensure that we have intelligent and respectful LIVE  musical programmes to keep us from being  totally  isolated from  the communities we helped build.Noreen Langdon 

Ms. Langdon, 

Thank you for your thoughtful comment.  It is wonderful to hear of the great work that you are doing.  

Still Alice by Lisa Genova provides an iuftghisnl, realistic portrayal of early onset Alzheimer's. It's a book that will change you, and one you won't want to put down. This novel reminds us that we MUST meaningfully engage those living with this disease. Tissues not included.

 Some may not appreciate or find the importance of exercise in ones life. For the information of many, exercise - whether basic or extreme, this physical activity not only can strengthen the physical body but also mental health. Exercise can also prevent dementia. Know more about  Midlife Exercises & Dementia.  

We've just launched a state of the art, UK standard nursing home in Sri Lanka, specialising in dementia care.Owned and managed by a British healthcare professional with over 30 years UK nursing home management experience. It's the first and only one of its kind in Sri Lanka and aimed at Western expats looking to retire to sunnier climes. With the end of the civil war, a booming economy, stable government and significant investment in infrastructure and amenities, Sri Lankan was voted the number one destination by British Airways for 2013.  http://www.independent.co.uk/travel/asia/where-to-go-in-2013-sri-lanka-8219292.html It truly is the gem in the Indian Ocean with miles of golden beaches and a comfortable inland climate, it’s quickly becoming a destination of choice for those looking to retire to a tropical paradise. Please see our web site for more info and do let me know if you'd be interested in visiting us/publishing an article to raise awareness of lower cost UK standard retirement options available to the British public. www.cinnamoncare.com or www.cinnamonsl.com Please contact me on info@cinnamoncare.com

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