Elder Advocacy Overhaul

Did an online search for  “patient advocate.”   My favorite description is found under the National Patient Safety Foundation site.  It lays out the basics of what to look for:

• Select a person you can communicate with & trust, someone who is assertive & has good communications skills
• Make sure the person is willing & able to be the type of advocate you need.
• Decide what you want help with and what you want to handle on your own.
• Be clear with the advocate about what you need them to know & be involved in. 

Do an online search for “elder advocate” and what do you find?  Mostly information about providing support in determining medical care.  Basically nothing about supporting the older person as a human being!   

The best I found was one on how to become an elder care advocate.  And all it focused on was “assisting seniors to apply for government benefits, such as Medicaid and Social Security disability, reviewing medical bills and insurance claims, and providing support after a hospital stay.”   Yikes!  Not a single mention – at least on the first couple screens – of an advocate helping an older person be the most he or she can be under whatever circumstances.

There was an excellent 2011 Forbes article,  Occupy Elder Care:  why caregivers are bad advocates.  Hooray & hallelujah!  An article that talks about the lack of support services for older Americans & their caregivers!

It’s not like people with limitations or other problems haven’t been able to mobilize themselves into action.  I think about friends of mine who have a child with multiple birth defects who galvanized themselves & their friends into action;  no one was a greater advocate for the dignity & rights of the disabled than their daughter, who became a small but mighty power for people ignored & rights denied.  She consulted with institutions on ways to comply with the Americans with Disabilities Act & was a highly successful fundraiser for the hospital she considered her second home.

She was able to become a visible, powerful advocate for policies to benefit the disabled.  Over the years, her parents & later Katie built & maintained strong support networks among others facing similar challenges & those who supported their cause.  Her reality became a rallying point.  

 It’s so different for the elderly & those who care for them, and it shows in how invisible they are when it comes to government policy, to societal support & cultural understanding.

In the interest of full disclosure:

My experience as an elder advocate is not the norm.  Unlike most people dealing with aging parents who typically have little or no experience with older people, my life was filled with them.  At 42, Mom was a lot older than the average mother when she had me.  Many of her friends were considerably older than she was.  “Grandma” Rose, Mrs. Ridgeway, Miss Cornelia – all three of the ladies with whom she shared round robin Friday night cocktail parties were almost old enough to be HER mother.  Since I was Mom’s chauffeur or co-host, I heard a lot about the ins & outs & round-abouts of aging.

Most people my age aren’t so lucky.  A shocking number of my contemporaries have very little experience with aging olders.  Many of their grandparents or older relatives sold off their homes & moved into retirement residences.  Few of them got to experience vacations at their grandparents’ place or at the family vacation house at the shore or lake. 

In my little hometown, we still have a semblance of community.  That makes a major difference when it comes to aging.  When I see an older couple, I see a friend’s parents, people who welcomed me into their house when I was a kid, who went to my high school graduation, who attended my wedding.  When I see an older woman, I see the teacher who helped me fall in love with Robert Frost or who tried her best to explain geometry or who taught me how to navigate the parallel bars.  That’s rare in many, if not most, American towns.

Five weeks spread between Mom’s fall while on a weekend bop to Alexandria, VA & her death in her own room.  While she was home, a steady stream of friends came by to give me time off, to keep her company.  My gosh - for the last week of her life, the woman was dictating answers to e-mails from the local college’s psych class about what it was like to be dying! 

That is NOT the norm.

The norm is for people struggling with aging loved ones to be facing the challenges alone, sometimes great distances from their olders, typically without anything that slightly resembles a support network.  There’s all sorts of information out there for developing a successful career, for nurturing relationships, for getting married, for starting a family, for building financial security.  Who reads about the challenges of aging before the crisis is thrust upon them?  Or continues talking about it about the crisis is past?   

A generation or so ago, when the wife typically stayed home, there was someone to provide care & support.  If grandpa needed extra care, grandma could usually count on a nearby child to lend a hand.  Careers have turned this natural family network on its ear.  Even when children live close by, most couples both work.  Their available time is limited, as are their energies.  And if they have children, they feel sandwiched between responsibilities.  It can feel like a lose-lose situation to everyone. 

It was my blessing to be married to someone with a close relationship to his own mother AND who was an artist, with his studio right next to Mom’s room.  He kept what would have been a huge burden from ever landing on my shoulders.  Not true with most other children of aging parents, who find themselves with no experience, little or no support, and no time.  

And just as some of them begin to get the hang of it, the older dies.  It tends to be a solitary experience, with at best a bittersweet ending, and a desire to get back to an earlier life.

For whatever reason, many – maybe most – people see olders' need for help as limited to  applying for government benefits, reviewing medical bills & insurance claims, providing post-hospitalization support.  

I believe Mom & “Grandma” Rose & Mrs. Ridgeway & Miss Cornelia would raise their whiskey sours to toast the idea that the world needs elder advocates who can communicate with olders & their families, who provide the support the olders want, can be a friend confidant ally, can help the older find additional support services if needed, can be a constant caring even fun presence.    

Here’s to an evolution – revolution! – in elder advocacy, one that engages, energizes & empowers ~ ~  all else is bosh!