Be an advocate for your aging loved one.

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If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?

In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility.  Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job.  By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.

I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests.  It’s easy to have a perhaps unwarranted laid-back attitude because:

  1. mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
  2. mom is living in a ritzy/expensive place so it must be the best option for her; and/or
  3. this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.

I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom.  Let’s take each point separately.

  1. Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one.  However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year!  There’s a reason why caregiver turnover is so high.  This job is TOUGH and the pay is unconscionably low.  A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years.  This report is worth your while to read.  Learning is power – right?
  2. Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided.  Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great.   Sometimes what I call “generic” buildings oftentimes provide as good or better care.
  3. The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care.  So a waiting list does not necessarily represent quality.

So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.

SPEAK UP.  You don’t have to be a squeaky wheel to get the grease.

  • Be persistent yet respectful.
  • Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
  • Be present: in person if you live nearby or by phone if you are a long distance family caregiver.  Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.

OBSERVE.  When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance.  How does it differ from visit to visit?  Is her room tidy, clean and uncluttered?  One way to observe staff members in action is to accompany your mom on facility outings.  Observe the staff’s interaction with the residents.  Do they speak respectfully to them?  Are they patient with them?  Do the residents enjoy their outings or do you get the impression that these outings are forced upon them?  All of these impressions are important towards discerning what goes on in your absence.

ADVOCACY RESOURCES.  Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident.  Each state in this country has a LTC Ombudsman program.  Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.

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Speaking of Doctors…here’s some medical humor.

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A doctor is talking to his patient one day and he says, “I have some bad news and some terrible news.”

The patient asks, “What’s the bad news?” and the doctor says, “You only have 24 hours to live.”

The patient says, “Oh no!  What news could possibly be worse than that?”

And the doctor says, “I’ve been trying to contact you since yesterday.”

 

Senior Health Specialists? Geriatricians? Where are you?

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The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.

Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health.  “What about geriatrics?” I ask them.  “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!”  They don’t buy it, especially since Geriatricians are  one of the lowest paid medical specialties amongst the medical community.

Square Dancing class at my town's Senior Center.

Ugh!  Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us?  Not very many according to the linked article above.  According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older.  No wonder people can’t find a doctor who specializes in Senior Health!  I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients.   Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia –  as they do their patients in their 20’s thru 70’s.  That just won’t cut it.

Older patients have more complex conditions – and more of them.  If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment.  “What can you expect at your age Mrs. Jones?  Be glad that you’ve lived this long!”  I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.

My wonderful Dad, pre-Alzheimer's, on my wedding day.

Think about it my fellow Baby Boomers.  Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing?  I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment.  The vulnerable adults among us might not realize that they have choices.   They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives.  Who loses in that equation?  We all do.  If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?

Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us.  What are your thoughts about this glut of Senior Health professionals?  How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?

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.

Senior Citizens are NOT children!

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An epidemic has taken hold of this Nation.  Adults 70 years or older are being infantalized.  Adult children have decided that their parents can’t do anything without their guidance.  Service employees, e.g. restaurants, retail store clerks and the like, feel compelled to talk down to their Senior customers.  Caregivers in long-term care (LTC) facilities further degrade the residents with baby talk.  These residents downsized their living space; don’t downsize who they are by treating them as anything other than who they are: intelligent adults.

Only you can put an end to this epidemic.  If it is not eradicated by the time you reach the Senior Citizen age, you too will be subjected to its horrors.

Adult children.

Mom moves into your house because of a financial or medical reason, and suddenly Mom has no say in what goes on in her life.  Everywhere she turns, her son and daughter-in-law are bossing her around in the guise of trying to do what is best for her.  Mom wants to stay up late reading or watching TV and she’s told she should go to bed.  Mom wants to do this activity, or that activity with friends outside of the home and she’s told not to leave the house because the son and daughter-in-law want to make sure she doesn’t get into any trouble.

PA-LEEEEEZE!!!!!

Your Mom raised you and somehow you turned out o.k.  She must have been a good parent, teacher, guidance counselor, child supporter, you name it.  Just because she is living under your roof doesn’t mean she’s lost her right to have a say in matters that go on in the household.  Ask her opinion from time to time.  Let her somehow contribute to the functioning of the household, e.g. day-to-day participation in household functions, helping you with decisions you’re making about your own lives.  Doing so will restore her pride and make her feel less superfluous.  It’s quite o.k. to be concerned about her well-being – you should be – but you can do so without suffocating her.

Service employees.

My mother with my daughter Erin, circa 1976.

Why is it that wait-staff, retail sales clerks and the like feel an immediate need to speak super loudly to a Senior citizen customer?  In my work with the elderly, I made this very mistake by talking loudly to a LTC resident I had just met.  She finally interrupted me, put her hand on my knee and said, “Irene, I’m old; not deaf.  Please stop yelling at me.”  So simply lower your voice and don’t call her a pet name such as “Sweetie,” “Hon,” etc.  I’ll never forget my mother’s phone call to me many years ago when she was barely over 70 years old.  She went to the Dept. of Motor Vehicles to renew her driver’s license.  After filling out the paperwork and getting her photo taken, it was time for her to leave with her newly issued license.  The DMV clerk then said quite loudly, “Now Sweetie – before you leave, make sure that you have everything with you that you came with.”  My mother called me that evening, both angered and in tears, bristling at the way in which she was treated.  In my mother’s eyes, the DMV clerk downsized her intelligence and abilities and that thoughtless act forever changed my mother as a result.  Please treat your Senior consumers with respect and with dignity.  They know they are older than you are – you don’t have to remind them of that fact with your ill-placed attitudes and gestures.

An aside:

Here I am, 58 years old, with my hubby. Only HE is allowed to call me Dear.

When I was 58 years old, a couple years ago, I picked up some items at my local grocery store and used the self-checkout counter to purchase my groceries.  As I was leaving the store, the retail clerk said, “Thanks Dear!”  A male customer who was older than me also went through the self-checkout at the same time but that retail clerk didn’t say a cutesy name to him!  Oh Boy – she didn’t know what she had just started.  I didn’t make a scene.  I left the store, wrote a letter to the manager and included this blog entry/article with a suggestion that he update his store training to include my suggestions about how to treat Senior Citizens.  He wrote me back to thank me and stated that he planned to provide updated sensitivity training to his staff.  BRAVO!

Professional LTC caregivers.

Oh boy – I see this a lot.  Caregivers who, God bless them, have a job that not many of us would willingly perform – especially at the low hourly wage at which they are paid.  I admire you and I respect you.  You’re a better person than I because I don’t have what it takes to do what you do.  But please address your patients/residents by their given names.  I would even go so far as to suggest that you call them by their surname until they give you permission to use their first name.  “Good morning Mrs. Smith.  It’s so good to see you today!”  That’s a far more respectful greeting than the following:  “Good morning Sweetie Pie.  Let’s get you ready for breakfast, shall we Hon?”  YUCK!  God help the person who addresses me that way when I reach my Senior years.  I’m a friendly person at heart, but I too would bristle at any condescending treatment directed towards me.  (And considering how I reacted to the cutesy name directed at me in the supermarket a few years ago (above) I may not be quite as civil in my later years.)

BOTTOM LINE FOR EVERYONE CONCERNED.  These Senior Citizens with whom you have contact survived the Great Depression and at least one World War.  Surely they have the ability, and the right, to be treated with respect and given the benefit of the doubt when it comes to making their own personal decisions.  Don’t take away their ability prematurely.  Eventually they may not have the ability to function independently, but it doesn’t do them any good for you to hasten the time in which that may happen.

After my most recent post, I decided that some humor was in order.

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These guys rob a bank wearing gorilla masks.  As they’re getting away, a customer pulls off one of the robber’s masks to see what he looks like.

The bank robber says, “Now that you’ve seen me, you have to die,” and he shoots the man dead.

The robber looks around the room.  Everyone is looking away or covering their eyes.  “Did anyone else see my face!?”

An Irishman in the corner slowly raises his hand.  “You saw my face!?”  “No, but I think my wife might have got a wee peek.”

When your loved one with Alzheimer’s no longer recognizes you.

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Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you.  As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room.  Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you?  Why are you here?”

You can’t imagine this scenario unless, of course, it’s happened to you.  I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.

Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church!  Kind of funny, right?  But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.

My dad's final resting place - one month after my last visit.

I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.”  Needless to say a) I’m his daughter; and b) my name is Irene.  My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.

Did it feel weird for him to call me a name not mine?  You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first.  Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer.  What I would have given for many more opportunities to have passed off as his friend Jim.  It was not to be.

The loss we experience with non-recognition.  I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history.  No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique.  Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same.  Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive.  That’s a difficult pill to swallow to be sure.  There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.

I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive.  A caregiver can’t take your place; a well-intentioned volunteer can’t take your place.  Only you can transmit the familial love that will make a difference in your loved one’s life.

Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life.  If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.