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Dead Inside

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What a horrible title for an article.

It’s also a horrible concept, don’t you think?

But many with dementia are dead inside without any means of engaging with others in meaningful conversation.  Heck, they might not even be able to talk to themselves: a practice I engage in quite frequently.

What an isolating state to be in: you’re there, but not there.

My daughter & I outside the Varsity Theatre, Seattle, after viewing the documentary.
My daughter & I outside the Varsity Theatre, Seattle, after viewing the documentary.

Fortunately, those with Alzheimer’s, dementia, or other cognitively restricting illnesses, have a chance to awaken their memories – and therefore their history – but not without the tools to do so.  Alive Inside, the 2014 Audience Award winner at the Sundance Film Festival, is a one and a quarter hour documentary film that touts the benefits of personalized music therapy for those who are living dead inside.

Dan Cohen, social worker, Founder and Executive Director of Music & Memory, started this awakening project several years ago.  Here is a description of the project, taken from the film’s website: “Music & Memory … promotes the use of digital music players with individualized playlists to improve the quality of life for elders, regardless of their cognitive or physical status … Dan has spent most of his career helping individuals and organizations leverage technology.  Music & Memory operates in hundreds of long term care homes across the U.S. and abroad.”

Watch the 2.15 minute trailer on the provided Alive Inside website to witness a few of the individual awakenings spotlighted in the film.

Even if the film is not scheduled to appear in your area, you are still able to help awaken the millions of people in the United States and abroad by your participation in Mr. Cohen’s project.  Whether it’s feet on the street or a click of a mouse to donate funds, each of you can become a part of these efforts.

Additionally, if you know someone, or are caring for someone with cognitive decline, put together a personalized database of music for that someone in a digital music storage device, then connect them to it with a set of headphones.  You might be able to awaken him or her with that simple effort on your part.

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Caregiver: put on your oxygen mask first.

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passenger-362169_640The airline flight attendant gives pre-flight safety instructions:

“In case of a loss of airplane pressure, oxygen masks will drop from the overhead compartments.  Put mask on yourself first before assisting children or those not able to help themselves.”

Why?  Unless the able-bodied person is fed oxygen, he won’t be able to help any one else.

Whether you are actively providing care to your loved one or you are the point-person managing that care, you are stretched thin.

Your reserves are low.

Your tank is nearing empty.

You’re on the path to caregiver burnout – or you’ve already arrived.

You love to think that you can do it all:

  • have a full-time job, and a full-time family;
  • have numerous duties in your own household that obliterate any “idle” time during your day;
  • you’re on the community board or other volunteer activity; and, oh yah
  • you’re responsible for your aging parent’s, or spouse’s, day-to-day maintenance.

Not only are you burning the midnight oil; you’re burning the candle at both ends and about to self-destruct.

“But I have to do this.  I have a lot of people counting on me to take care of dad.  If I don’t do it, who will?  I won’t be a dutiful son/daughter, if I walk away from all my responsibilities!”

Oftentimes what happens in these situations is a person ends up being of no good to anyone.

  • You’re taking more and more time off from work either due to your own illnesses or to attend to the needs of others;
  • Your spouse and children are suffering from the constant stress that your over-extension of commitments places on the household;
  • The project for which you volunteered at the PTA or Boy Scouts, or FILL IN THE BLANK, is dead in the water because you don’t have the time or energy to devote to the cause; but
  • Your loved one for which you provide care is doing just fine because he/she is receiving all of your attention.

Keep this up and you’ll be no good to anyone because a vehicle doesn’t run on an empty tank and neither can you.  It’s time for you to attend your own “care conference” to come up with a realistic plan of how to direct your own health and well-being.

The “To Do” List vs the “Don’t Do” List:

You weren’t put on this earth to help everyone and despite your well-meaning belief that you can do it all – you can’t, and you’ll never be able to do so.

  • Write a list of everything you currently feel obligated to do each week.  Now cross out a third of that obligation list.  Do what you can to delegate duties and/or designate other willing people to carry a third of your burden.  You should already start feeling better.
  • Now eliminate – or temporarily withdraw from – another third of your obligations. You won’t offend others by doing so if they know you well enough to understand your reasons for stepping back a bit.  I’m certain they know that they will be able to count on you later when your life situation isn’t so acute.  You’re not dropping out, you’re just putting yourself on pause.
  • Reconnect with the family in your household. Don’t risk losing your family.  You need them on your team and they need you.  They will be around long after the loved one for whom you’re providing care passes away.  You want your family with you now, and you’ll want their support later.
  • Assemble a caregiving team. In my blog entries: Caregiving: The Ultimate Team Sport and Solo Caregiving I address the importance of reaching out to others and tapping into resources that will help you stay sane and healthy while on this caregiving path.

You owe it to yourself, and your loved one, to start taking care of yourself.  So place your own well-being at the top of your priority list.  I can pretty much guarantee that you won’t regret it.

Advocacy starts with the smallest effort to make a difference

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I was touched by the following quote that appeared on Lark Kirkwood’s Elder Advocates site a few years ago:

Do all the good that you can, in all the places you can, in all the ways that you can, at all the times you can, to all the people you can, for as long as you can.  – John Wesley

I want to add the following sentiment which has become a sort of mantra for the way I conduct myself:

We can begin by doing small things at the local level, like planting community gardens or looking out for our neighbors.  That is how change takes place in living systems – not from above – but from within, from many local actions occurring simultaneously.  – Grace Lee Boggs

It only took 3 people to raise $100’s at a garage sale for the local Alzheimer’s Association.

I’m so encouraged by the different types of advocacy that I’ve witnessed across this nation.  Some advocate for the elderly, some the disenfranchised or marginalized, others advocate for the humane treatment of animals.  Whichever the focus – it’s all about advocacy.  The good news is that whether a person lives in Redmond, Washington, like myself, or Washington, DC – we are all making a difference in each of our small corners of the Universe.  Imagine if everyone did just that.

Instead of having the mindset that the only things worth doing are those which are grandiose and news worthy – and therefore believing that you have nothing to offer – do what you can, with what you have, and your impact will be grand.  Many small, positive actions add up to great advances in the betterment of our world.

Regardless of your age, you can make a difference in the lives of others.  If you’re looking for something to do, consider helping an elder or two.  Let’s face it, unless death comes early for us, we’re all going to enter the elder category at some point in the future.  You may someday benefit from someone else’s tender loving respect and care.

Greetings from Redmond, Washington!

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I’m a Baby Boomer – are you one too?

No doubt you have already faced some challenges in your 21st Century age grouping called: Baby Boomers.  I think you’ll agree, however, that along with those challenges we’ve also experienced delightful times that can only be experienced by us Boomers fortunate to have grown up in the 1960’s and 1970’s.

My hope in starting this blog is that you and I will be able to provide some sort of content that benefits our age group, but not our age group only.  Let’s face it, our children and/or our grandchildren need some sort of resource that adds to their understanding of what we’re going through.  They too will enter a Baby Boomer-Like age grouping when they reach our age so perhaps we’re doing them a favor by getting their feet wet in this wacky aging world in which we live.

Some of this blog’s content will be humorous; some of it will be inordinately sad.  My hope is that one way or another, we’ll all be better off because we’ve entered this “Baby Boomers and More” blog site.