Personal Struggles

Common Caregiver Challenges

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Common Caregiver Challenges.

The words Caregiver and Challenge go hand-in-hand.  Here’s an article to shed some light on a caregiver’s predicament.

Examining our gratitude levels

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By the time you read this article, I hope you’ve already read the reblogged article I posted entitled “Up Your Gratitude,” published in a Parade Magazine article earlier this year.  That article was part of the inspiration for this article and can be found in this same Blog category.

I recently watched an Oprah Network special wherein Oprah visits families of Hasidic Jews.  One of the families had NEVER seen a television show in their lives and didn’t even know who Oprah was until her staff approached the family about this project of interviewing a Hasidic Jewish family.  This family consisted of the husband and wife and 9 children, the oldest of which was 17 years old and the youngest, 18 months.  If you can believe what the 17 year old son said – and I think I do – he has absolutely never watched TV and is an extremely happy teenager.  The couple’s 15 year old daughter loves not having the normal pressures associated with young teen girls.  “There’s no pressure” she explained.

Hasidic schoolchildren in Łódź, circa 1910s.
Image via Wikipedia

None of the children had ever heard of the names that Oprah tossed into their conversation: from cartoon characters such as Micky Mouse and Sponge Bob Squarepants, to Beyonce and other well-known entertainers.  Nope, they had no idea what or who she was talking about.  Considering they had never heard of Oprah, that’s not at all surprising.

And yet they were extremely happy and grateful people.

THIS ARTICLE IS NOT ABOUT RELIGION – it’s about the lack of wanting more,wanting better, and wanting bigger as it relates to consumerism.  Each person Oprah interviewed talked about the lack of pressure in their life to want, want, and want even more.  As a matter of fact, the wife in this family of 9 children, who is pregnant with her 10th child, said the only time she had a feeling of wanting more was when she was able to upgrade to a better wig when her earnings increased.  (At a certain age, Hasidic women must cover their hair as a gesture of modesty, be it a scarf or a wig.)  So when this woman was able to get a better wig she experienced an “Aha” moment – getting a better, more natural looking wig satisfied a want for something more that she hadn’t ever experienced.  Gratitude abounded in this household that most definitely doesn’t resemble our idea of a “normal” frantic-ridden, electronic guided, household.

Time to check my own gratitude level – and level of personal satisfaction.  When you receive not-so-good service at an establishment, do you trash its character to others so that they are aware of the establishment’s failings and will curtail their support of its business?  It’s easy to complain about something isn’t it?  It’s harder – but better – to compliment someone who does a great job:

  • Writing a note to the manager of a salon you frequent, complimenting the stylist who always does such a great job on your haircut and/or color.  It’s not enough that you tell the stylist how satisfied you are.  Tell the one who signs his paychecks and sets his schedule – that’s where the thank you also needs to go so that your favorite stylist receives something for his/her efforts.
  • Going out of your way to thank someone in person, or by thank you note, for their volunteerism at church or other community venue;
  • Calling or writing a note, not texting, not e-mailing, when you’re grateful for something you received as a gift;
  • When your coworker does a great job, or your child does something in the home without being asked, or when you are simply grateful for the commitment your spouse has to his or her job that assures constant financial support in the home – acknowledge their efforts instead of simply appreciating them in your own mind.

Who benefits from appreciative thoughts if they are not expressed to the person who inspired them?  Gratitude expressed provides more benefit than you can imagine.  Don’t you want to start a ripple effect of gratitude in your small corner of the universe?  Get that ripple going – you’ll be better off as a result, and everyone to whom that ripple touches will benefit as well.

Up Your Gratitude: ThankYou Notes Can Have Profound Effects | Parade.com

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Up Your Gratitude: ThankYou Notes Can Have Profound Effects | Parade.com.

The attached article, published on January 1, 2012 in the Sunday newspaper’s Parade Magazine section, had a great impact on me; so much so that I wrote my own blog article today, about the effects of gratitude on one’s life.  I hope you enjoy both articles.

10 Government Programs You Can Access for Your Elderly Parents

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10 Government Programs You Can Access for Your Elderly Parents.

This VERY comprehensive article is designed for a person’s elderly parents but guess what…us Baby Boomers need to be aware of these resources as well so I want to pass this article along to you!  It helped me – I hope it’s a great resource for you as well.

Alzheimer’s and other dementia: Advance Directives

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Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.

Auguste Deter. Alois Alzheimer's patient in No...
Image via Wikipedia of a patient for whom Dr. Alzheimer provided care. This patient became the model for diagnosing Alzheimer's dementia.

My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved.  My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died.  Think of an Advanced Directive or Living Will as a gift to your loved ones.  It certainly was a gift to my siblings and me.

An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia.  This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness.  This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness.  Bravo Washington State!!!

Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives.  The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.

What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?

Potential issues that might be addressed are preferences regarding:

  • care in and outside of the home;
  • financing of said care;
  • caregiver choices;
  • involuntary commitment;
  • consent to participation in drug trials;
  • suspension of driving privileges; and
  • any future intimate relationships.

To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816.  At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia.  Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver. 

That’s a priceless gift to be sure.

The Best Alzheimers Caregiver Tool of Them All, Harvey

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The Best Alzheimers Caregiver Tool of Them All, Harvey

There is no such thing as easy caregiving – anyone who has been, or is currently, a caregiver for a loved one with Alzheimer’s or other dementia can attest to that fact.  The good news, however, is that every once and awhile we’re fortunate enough to be exposed to glorious snippits of wonderfulness that help us through the day.  Here’s hoping that this link does just that for you.

 

Financial fraud against the elderly: it’s a family affair.

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A trusted family member would NEVER financially exploit their loved one – right?

WRONG.

All classes of people, and most age groups, become victims of financial fraud.  The elderly, however, have been hit particularly hard.  A recent Puget Sound Business Journal article (a Washington State publication) provides some astounding statistics for the state of Washington:

  • reports of elder abuse grew by 30% in five years;
  • 4,121 cases were reported to Adult Protective Services in all of 2010 and that number was already reached by November of 2011;
  • the Washington State Office of the Attorney General only receives a fraction of the financial abuse cases because many go unreported; and
  • the National Center of Elder Abuse in Washington, D.C. states that only one in 25 cases of elder abuse are ever reported.

So who are the perpetrators?  These thieves are neighbors, caregivers (family related or not), best friends, and  trusted financial professionals.

But nationally, nine out of 10 financial exploitation cases involve family members. 

This type of abuse begins innocently enough “let me help you pay your monthly bills mother.”   The adult child becomes a signatory on the bank accounts, keeps up with mom’s bills, but also pays him or herself a little here and there and before you know it, mom doesn’t have the financial means to live out her days.  Certainly most family members are trustworthy and respectful of their elders and look out for their elders’ best interests but the statistics certainly paint a horrific picture, don’t they?  And what’s worse, if the elderly victim has Alzheimer’s or other dementia, it doesn’t take much effort for anyone – family or stranger  –  to enrich their own bank account while draining mom and dad’s.

It’s virtually impossible for government agencies to monitor cases of elder abuse.  The local agencies that help the indigent elderly are strapped financially.  Budgets are being cut resulting in decreased staffing, and caseloads that are unmanageable and overlooked – but not for lack of trying!

So what can you do to protect those vulnerable adult victims that seemingly go unnoticed in our local communities?  I provide some suggestions in my blog article, Elder Fraud: a few things you can do to protect your loved one.  This article assumes that family members are trustworthy and selfless in their interests.  Fortunately, that’s probably you, but obviously, elder fraud is a national problem so it’s vital that everyone be reminded of how easily thieves can take advantage of the older generation.

I’m certain this topic affects many of you and at the very least, angers the rest of you.  I covet your input and look forward to your thoughts on this matter.

Voices of the bored retirees.

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  • “I’m trying to decide what to do with the rest of my life.”
  • “I’m a frustrated fish out of water since retiring two years ago.”
  • “I’m desperate to find something to fill my time!”
  • Woman in her 80’s: “What am I supposed to do with the rest of my life?  I feel helpless and hopeless without worthwhile connections.”
Are you living past the sunset in your life?

I attended a class four and a half years ago comprised of people in their 50’s through their 80’s.  This class was designed to make our Senior years count.  I just now stumbled on notes that I took in that class wherein each class member was asked to make a comment about their current state in life.  The above four comments are just some of those statements.

Desperation and sadness all around me.  I recall now that the mood of this class was one of desperation and sadness as those who yearned for retirement their whole working life found themselves frantically trying to fill their days.  Their feelings were summed up in these words:

  • depressed
  • lack of purpose
  • short-sightedness
  • emptiness
  • loss of self

Gerontologist, S. Barkin puts it this way regarding our responsibility to be actively walking through our senior years, and I paraphrase,

What do we want to do for the time remaining in our life?   We all should be mining our experiences and the wisdom therein to help with our present and future paths.

As I mentioned in my article, Retirement planning: it’s not what you think, all of us have a history of life skills that should not be put up on a shelf and never used again.  Instead we should be retooling those skills into something that is meaningful and enjoyable to us and beneficial to others.  The students in my class had many thoughts – mostly unfocused and therefore not very productive – but those thoughts had yet to turn into action.

The first step is to decide what is significant to you and act on it.

Aging well starts with the mind but it’s in the doing that makes it count.  We all have a choice when we find ourselves at a loss of purpose: we can stay stuck, or we can actively make a difference in the local community around us.  Baby Boomers are the first generation of peoples to have such a long life span.  We’re living longer so we have more time to pass our knowledge down to others and use our skills in a valuable way.  As the sports company Nike says in one of their ad campaigns:  JUST DO IT!

Greetings Baby Boomers! What’s on your mind?

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I love to write; I love to talk; but I also really, really, love to listen.

I placed this Blog entry in the Personal Struggles category of my Blog because I’m struggling to assure that what I’m providing on this Blog meets your needs and interests.

Sure, my ego would be stoked by having more Followers and more page hits – and I welcome all that have an interest – but that’s not my biggest concern.  What’s missing for me is reader input in the form of Comments.  A lack of comments is not the readers’ fault, rather, I think I’m missing the boat regarding the nature of my Blog entries because they don’t encourage Comments.

Are my articles too long?  Are they not sufficiently pertinent to your ongoing interests?  Is the subject matter too limited in scope?  If so, in what direction would you like me to go?  I’ll go just about anywhere with my Baby Boomer Content because I’m not an expert on a zillion topics but I am interested in at least that many.

If you have the time, I’d love to hear from you.  And I can pretty much promise that I won’t be offended by any constructive criticism you provide.  Society is like a bird.  It has two wings, and a bird can not fly when one of its wings is broken.  My wing isn’t broken, it just needs to be pointed in the right direction.  I hope you’re willing to help me do so.  I love what I do and cherish this venue where I can hone my skills and increase my knowledge because along with listening comes the benefit of learning something new.  I can hardly wait to hear from you.

Retirement planning – it’s not what you think.

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How do you define using your time in a meaningful way?  If you’re getting ready for retirement – or are already retired – how are you going to spend those 40+ hours you previously filled at your job?  “That’s easy!”, you say. “I’m gonna do whatever I want to do, whenever I want to do it: sleep in, read, play golf, travel; I’ll have no problem filling in the time!”

Now fast forward a year or two: you’re bored; your spouse is sick of you just hanging around the house; you’re feeling like there’s something more you could be doing; and even with doing whatever you’ve wanted to do, something’s missing. You wish there was more to this long sought after retirement phase of your life.

How do you envision using your free time?

You’re not alone.  The founding Director of the Stanford Center on Longevity, Laura L. Carstensen, correctly states in a recent AARP article, that “people are happiest when they feel embedded in something larger than themselves.”  As we all know, we are living longer.  In order to make good use of these added years, we need to ask ourselves what we can offer others in these bonus years of our lives.  Should we continue in what might be our restricted scope of the past: getting by, doing what we can for ourselves and our family, but rarely reaching out beyond that confined scope?  If you feel as I do, that’s not nearly satisfying enough.

What should our lives look like now that most people spend as many years as “old people” as they do rearing children?

How should societies function when more people are over 60 than under 15?

Ms. Carstensen is certain that today’s generations of older people will set the course for decades to come and that “change will happen, one person at a time.”  I personally think that too often we think that any “doing” that we do must be grandiose in scale; or remarkable and newsworthy in order to be worthwhile.  If I felt that way, I don’t think I’d even make an effort to give of my skills, my time and my passion to my community.  Why bother?  It won’t do any good, right?  WRONG!

“If every person over 50 makes a single contribution, the world could be improved immeasurably.”

Is this the sunset of your life or just the beginning?

Think about it: us Baby Boomers have a history of life skills that can benefit so many!  How sad it would be if the engineer, the lawyer, the CPA, the household family manager, the medical professional, and other highly skilled people put those skills on the shelf, never to be used again?  What a waste!  I’m not saying you continue to be that engineer, lawyer, and the like in your retirement.  What I am saying, however, is that your past experience, regardless of its nature, can be used for the good of others but perhaps reshaped into a different form.

The bulk of my employment experience has been in the legal field and the senior housing industry, but at this stage of my life I’m not specifically involved in being a paralegal, or a senior housing manager.  What I am doing, however, is combining those skills and directing them towards areas for which I am very compassionate, e.g. advocacy for older adults, and counsel for those taking care of a loved one with dementia.  You too can contribute to your local community by applying your skills in ways that benefit others and are meaningful to you.  I would be of no use to anyone if I didn’t believe my personal Baby Boomer motto:  Committed to strengthening my community one person at a time –  not one society at a time; not one State at a time, and certainly not the world.  But I can motivate myself to strengthen my community one person at a time.

At what do you excel and what do you like to do?  As an older adult, perhaps retired, you now have the luxury of doing what you LIKE and WANT to do, not just what brings home steady income and puts food on the table.  Whoo hoo!  What a luxury!!!

LET’S TALK ABOUT THIS SOME MORE:

What are you doing now to plan for a satisfactory remainder of your life?

How are others currently benefiting from your knowledge-base and how did you find the new venue in which to share your knowledge?

If you’re retired: How satisfied are you in this stage of your life?  If you’re satisfied: why?  If you’re not satisfied: why not?

Honesty is NOT always the best policy.

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Bear with me – don’t judge me quite yet.

You are not destined for Alcatraz just because of a little well-placed dishonesty.

If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies?  Do you stretch the truth a bit in order to keep the peace?  Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life?  Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.

How do you jump over the hurdles of negotiating with a loved one for whom you provide care?  Here are a few examples that come to mind.

Scenario one: the need to get creative in order to leave the house for personal business.  For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours.  Then make sure you’re back on time!  If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed.  Knowing that you’re going to a support group only confirms how miserable she’s made your life. Read the rest of this entry »

Life can turn on a dime.

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If ever there is an example of how life can turn on a dime, it’s Congresswoman Gabrielle Giffords’ tragic experience.  January 8, 2012 marks one year since Ms. Giffords was shot in the head while meeting with her constituents in Tucson, Arizona.

The bullet traveled 1000 feet per second into her brain and not only did she survive, even her neurosurgeons termed her recovery a miracle.  Is Ms. Giffords back to 100%?  No.  Will she be?  There is a strong hope that she will.  As her husband said to Diane Sawyer when asked if he’s holding out too much hope: “You can’t have too much hope!  That’s not practical!”  In her ABC special on 20/20 chronicling Congressman Giffords’ and her husband, Astronaut Mark Kelly’s journey, Diane Sawyer characterized their endeavors in this manner:

 The courage & love you bring when the life you live, is not the life you planned.

Life turns on a dime in many ways: in relationships; in difficult financial times; and in sickness and in health, to name just a few.

Some of you reading this Blog are in the midst of a life trauma that you certainly didn’t plan, and from which you wish you were released.  What challenge do you face?  Did you see it coming?

One story of life’s changes. I volunteer as a Facilitator for an Alzheimer’s Association caregiver support group.  Every member of our group has a loved one with some sort of dementia diagnosis.  Some are in the early stages, some are in the middle stages, and three in particular recently experienced the end stage.

RRRING!  A telephone rings in the middle of the night and life changes for caregivers gearing up for the Holidays with their family.

In the wink of an eye, life as they knew it took a sharp turn.  It’s the Holiday season and suddenly one set of caregivers hires in-home hospice care for their parent and another caregiver rides in an ambulance with her spouse to a local hospice center because of a terminal change in health.   Within days both sets of caregivers arrange memorial services for which they hadn’t planned at this stage of their loved one’s life.

BANG!  Six lives are lost, and Gabrielle Giffords’ and Mark Kelly’s lives change forever.

Congresswoman Giffords loved spending time with her constituents.  The night before she was shot, she took a long bike ride with a friend and was eager for the next day to begin.  A week later she and her husband were to undergo in vitro fertilization so they could start planning the birth of their first child together.  And those attending this gathering, both staff and general citizenry, hoped for a successful and enjoyable experience.  The bottom line is that you can’t plan for what you can’t see coming.

Oftentimes when we hear of tragedies such as those mentioned above, we naively say to ourselves, “Those are the types of things that happen to other people; not us.”  Well, the truth of the matter is, those types of things happen to people, and that’s us.

Congresswoman Giffords’ neurosurgeons stated that they don’t know where in the brain one finds charm, optimism, humor or charisma.  Certainly no where in the brain can one find sufficient prescience that allows us to see what’s coming around the corner.

No matter how hard we try; no matter how careful we are; life turns on a dime.  And sometimes, the life we live becomes the life we did not plan.

I received inspiration for this article from the caregiver heroes with whom I am acquainted, and from Gabrielle Giffords and Mark Kelly in their book: Gabby: A Story of Courage and Hope.

Negotiating to Yes

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Negotiating to Yes.

I really appreciate this article by Lark Elizabeth Kirkwood because teamwork is a theme/process that is applicable to so many areas of our lives.  Employed in a small or large company? Applicable.  Volunteer for non-profits?  Applicable.  Family members trying to play on their strengths in a caregiving situation?  Applicable.

Thank you Lark for showing us that teamwork isn’t just for sports teams any more.

Optimism amongst the chaos.

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In the book, Gabby, by Gabrielle Giffords and Mark Kelly, Congresswoman Giffords’ husband, Mark, provides statements about optimism that have greatly encouraged me.  Here are just a few:

  • “I saw how optimism is a form of therapy and hope is a form of love.”
  • “Doctors at TIRR, the rehab hospital, told us that our optimism and encouragement could make a great difference in Gabby’s recovery…”
  • “To be of help to a brain-injury patient, we were told, families need to find a way to balance pragmatism and optimism.”

In a Time Magazine article published December 13, 2011, Congresswoman Giffords addresses the struggles she and her husband have endured as they continue to adjust to the “new normal” brought about as a result of a bullet that pierced her brain on January 8, 2011 when she was reaching out to her Congressional district in Arizona.  So many of us have new normals as we walk, or fall, head first into Baby Boomerism.  This normal may involve a loved one who has a fatal or debilitating illness.  This new normal may be characterized as our own bodily/physical struggles inherent with our age.  Each of us have some sort of chronic something-or-other that inhibits our ability to function at 100%.

What is the chronic something-or-other that inhibits your ability to function at 100%?

The above question is a rhetorical one.  Neither myself nor the public need to know the specifics – but you know the specifics and you’re the one making long-term adjustments as a result.

What processes do you follow to unearth the optimism that exists somewhere in your psyche? How do you overcome your personal challenges so that you end most days victorious, rather than defeated?

My wonderful sister, on my left, and I at a Napa winery - tasting wine of course! Cheers!

For me, it’s acceptance.  For me, acceptance doesn’t mean giving in or giving up; rather, acceptance means being o.k. with how things currently are and finding ways to succeed within that new normal.  This mentality or attitude is more optimistic than you may think.  Again, for me, I  decided to allow optimism to nurture the hope that oftentimes is buried deep within me.  Things could very well change for the better –  which doesn’t have to be defined as being 100% problem-free.  Nope.  If I garner optimism at the start of each day, I’m making a conscious and aware decision to acknowledge and celebrate even the smallest of victories that might occur in the next 24-hours.  If I wait for a humongous, star-spangled mega-victory, I may wait forever.  Instead, I attempt to be aware of even the smallest improvements/goodnesses in my day so that my life is filled with many victories to celebrate.  The previous sentence says that “I attempt” to garner optimism throughout my day.  I don’t always succeed – but I try.

What small victory can you celebrate today?

What works for you? The rest of us would love to celebrate that victory with you.

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.

Caregiver Guilt

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Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.

The local caregiver.

Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.

Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.

At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.

Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.

Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life.  No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.

The long-distance caregiver.

One of many walks my father and I took around his facility

My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.

I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience.  I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.

As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be.  Cut yourself some slack and don’t be so hard on yourself.

Do your best – that’s all that is required.

Solo Caregiving.

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My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support.  When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.

Garage Sale fundraiser for the local Alzheimer's Association.
Garage Sale fundraiser for the local Alzheimer’s Association.

CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.

Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing.  Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance.  Now is the time to be very transparent with them and tell them what you need.

Having dinner with my dad and his late-in-life Bride.

DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.

There is no shame in inviting yourself to dinner.  If these are true friends/acquaintances of yours, they will welcome you into their home.  Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis.  Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so.  Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.

My wonderful Dad, circa 1960’s, being a jokester.

ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!

I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs.  Let’s look at the difference between the following offers of assistance.

  1. “Hey Sam, call me if you ever need some help.”
  2. “Hey Sam, could you use a little extra help around the garden?  I’m all caught up with my yard work and would like to help you in any way I can.”
  3. Hey Sam, we always cook for a crowd and always have some leftovers.  I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”

In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help.  You’re basically forcing him to ask for help.  In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out.  If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night.  How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”

Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs.  Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver.  If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.

Family dynamics that hamper caregiving success

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A team is only as good as its members.  If the playbook isn’t carefully followed, success is unattainable.

The scenario for this article centers around care for Mom.  It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home.  Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives.  What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal.  All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.

  • EGO. n. a person’s sense of self-esteem or self-importance.  Brothers and sisters, please check your egos at the door.  The exercise of one’s ego is so self-involved that the input of others, most likely controlled by their own egos, clashes with an individual’s perspective.  Acknowledge that egos are front and center, but either check them at the door, or put them high up on a bookshelf to be retrieved at a more appropriate time, and work together for the common good, not one’s own good.
  • SELFISH(NESS). adj. concerned chiefly with one’s own personal profit or pleasure at the expense of consideration for others.  I’m seeing a trend here.  Ego and selfishness go hand-in-hand and truly have no place in a team dynamic.
  • COMPETITION. n. the activity or condition of competing against others.  A successful sports team does not compete against its own members – it saves that for its opponents.  Your brothers and sisters are your allies, not your opponents, so you will all benefit from considering each other as such.  You want the same thing – the best care experience for your mother – so your common goal will be more effectively reached when all of you play on and for the same team.
  • SENIOR(ITY). n. a person who is a specified number of years older than someone else.  Just because you’re older than your sister doesn’t mean your input is more valuable than hers.  Your younger siblings are just that – they’re younger, not stupid.  I know that sounds harsh but I’ve seen this time and again where siblings maintain the same perspective of their childhood sibling relationships and it becomes a barrier towards moving forward as adults.  Once you reach a certain adult age, those differences no longer exist.  It’s hard to break away from the age hierarchy paradigm, but break away you must.
  • SHARED RESPONSIBILITY.  You’ll rarely find a family that carries the caregiving burden equally.  Some members will do more than others, either by virtue of their proximity to Mom, and/or due to their abilities.  But a greater percentage of tasks does not necessarily equate to a greater percentage of input regarding Mom’s caregiving.  Arguably one could say, “You don’t care enough to help out so we don’t care about what you have to say.”  One could say that but doing so is counterproductive.

I list the above traits because they can be very destructive when complex issues of aging and caregiving come into play.  Imagine trying to come to a consensus of opinion regarding an appropriate level of care for Mom at any given time, or managing the financial dilemmas often inherent with the caregiving process; or the emotion-packed subject of end-of-life issues.  Respect for each others’ opinions will go a long way towards paving the road with fewer speed bumps.

A caveat:  I acknowledge that some family histories are far more complicated, and more dysfunctional, than others.  Because of the unhealthy years that many children have experienced growing up, far more is on the table when working with one’s siblings.  In those circumstances, a third-party unbiased counselor can be a valuable addition to the care team.

My question to you wonderful caregivers out there who have wrestled with this caregiving team challenge: how did you iron out the difficulties, or did you?

If you do not have any family members, please look at my article Solo Caregiving.

Caregiving: The Ultimate Team Sport

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What’s a pitcher without a catcher?  A quarterback without a receiver?  A point guard without a center?  Individuals – that’s what they are.  They are not a team.  Caregiving should never be an individual effort because quite frankly, one person can not do it all.

Take a deep breath; think happy thoughts; and do your best.

Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get.  For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals.  As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever.  Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor.  He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care.  Getting on the approved list might involve one or both of the following:

  • Facility Care Plan/Residential Agreement.  Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition.  There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care.  Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns.  If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
  • Power of Attorney for Health Care.  This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own.  I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.

Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.

Alzheimer’s Walking Team: myself, my hubby and my brother

Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths.  Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks.  As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load.  The good news, however, is that the GM is not alone – there are additional members of the team.

FINANCE MANAGER.  Your older sister is a finance whiz who’s very comfortable crunching numbers.  She gets to take over the day-to-day system of bill paying, investment monitoring, and the like.  You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.

INSURANCE MANAGER.  One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare.  Congratulations, his strength will contribute greatly to the whole.  But you don’t have to work for an insurance company to excel at this task.  Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies.  The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid.  This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance.  But effective Finance & Insurance Managers can successfully get the job done.

TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month.  Terrific.

Anyone need a cab?

That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized.  Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way.  This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.

FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING.  Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road.  If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them.  My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.

A team’s success is attainable – but each member has to dedicate themselves to the task at hand  for that to happen.