Eternally 12 Syndrome

My friend Colleen and I are both national speakers on issues related to caregiving

and aging. While in Washington D.C. to speak at the Aging In America conference we shared a similar challenge in our family dynamics. Though both of us are experts in our fields and have helped hundreds of families connect with resources, as well as speak nationally on issues related to caregiving and aging, we both struggle with an affliction within our families that I have termed the eternally 12 syndrome.

While we both have impressive qualifications in our own families we are not only perceived as having no influence but, at times, as if we are still 12 years old. In speaking with family caregivers throughout the United States, I have come to the conclusion that Colleen and I are not the only ones afflicted with this condition. Adult children all over the country (and I would imagine the world) are looked upon by their elderly parents as children who are not possibly experienced enough to assist in making educated decisions about their family members care (not even when you have been working in the geriatric field for over 20 years!)

So what can the afflicted do to assist their elderly loved ones while in a continuous prepubescent state?

Some tips to assist:

  • Ask for help: If there is someone in the family who they relate to on a different level ask that person for help. Sometimes you have to look at the perceived hierarchy and work with whoever is at the top to help make decisions.

Examples: In my family, my dad will listen what my sister says in a different way (even if she says the same thing as me) because she is the oldest child. My Aunt will listen and accept help from my husband before me, my sister or my mother. You see even my mom struggles with the eternally 12 syndrome as she is the youngest child in her family so my aunt who is only a year older than her still sees her as her “little sister”)

  • Call in a professional:There are professional called Geriatric Care Managers who are trained to facilitate family meetings and discuss care options. They can make sure the conversation stays calm and moves forward.

Example: When discussing with my grandfather, the option of moving from our home to a retirement community in order to increase his socialization, I asked a friend who is a geriatric care manager to facilitate our family meeting. Though she said the same things that I had said, she was seen as an authority figure to my family. My friend Colleen hired a mediator to facilitate family meetings between 8 siblings, regarding her mothers care.

Millions of family caregivers grapple with this syndrome as their parents’ age. You are not alone.

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Me, Mom and Dancing with the Stars

1337674858_dancing_with_the_stars_logo1_0Today is a big day for me.  Nope, it’s not my birthday (that was yesterday)…tonight is the premiere of Dancing with the Stars.

For many fans of the show this is exciting, however; for me and my Mom it’s an event.  Anyone who knows me understands that when Dancing with the Stars is on the air they need not bother calling or stopping by because I will not be available, not even during the commercials. (We are such fans that we have attended 2 of the Live Dancing with the Stars tours.)

Since the first few seasons of the show my Mom and I call each other during every commercial break to share our assessment of the previous dance routine, song choice, as well as, the judges’ scores and comments.  It’s our thing.

I’ve always enjoyed dancing (some Sue trivia, I even taught ballroom dance for a short time back in my 20’s), however; what I really like is that it is something I can share with my Mom.  Over the past few years through health struggles (see One Word Can Change Your Life ) and loss of loved ones (see For Aunt Josie), watching Dancing with the Stars has given us the opportunity to discuss something that we both enjoy and doesn’t involve doctors, hospitals or any medical jargon.

As caregivers we can sometimes get so caught up in the tasks of caregiving that we forget to find ways to connect with our loved ones.  I am blessed that I have always been very close to my Mom, however; I too can get caught up in the health needs and forget to foster the relationship outside of the health issues.

  • Find ways to connect with the person you care for beyond the health care needs. Go to a movie, lunch (not tagged onto a doctor’s appointment).
  • Have conversations that do not involve scheduling the next appointment or how they are feeling. If the conversation starts to go in that direction bring it back around by saying something like “we can talk about that more tomorrow, right now I want to hear about blank”
  • Schedule “fun time” with your loved ones!

Caregiving is hard and the time we have with those we love goes by so quickly.  Take time today to reach out and connect with those you love.

For more support visit CaregiverLife.com

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On the Edge Part 2: When Things Don’t Go as Planned

Recap: I in my blog On the Edge Part 1, I shared my favorite scene from the movie “It’s a Wonderful Life”, is where George Bailey (played by Jimmy Stewart) & Mary Hatch – later Bailey (played by Donna Reed) are at the high school dance caught up in the Charleston contest.  In the scene a jealous rival (trivia moment: played by the actor who played Alfalfa in the Little Rascals) finds out that the gym floor opens up to reveal a pool and that George was dancing right over the opening and that the button to open the floor was right in front of him.  As most of us know, the rival presses the button and after several dance moves the couple finds themselves in the pool.

What happens next is such a classic move, after the initial shock; George grabs Mary and continues to dance!  This move inspires the watchers who take a leap and join in.

Points to Ponder:

  • How do you react when things don’t go as planned?   Do you adapt and make the best of where you end up or do you bemoan and complain about where you are?
  • The only constant in life is change.  How flexible are you to what life throws at you?
  • How does your adaptability or lack there of, affect those around you?
  • What have you put in the way of creating more flow in your life when things don’t go as planned?

How we adapt to what life throws at us unexpectedly can make the difference not just for our life and health but for those around us as well.  We have a choice about how we react in the face of conflict, trials, unexpected twists and tragedy.  However; it takes the presence of mind and the ability to step back and take a breath and adapt.  So what will you do; keep dancing or stand on the sidelines and watch?

“Life is 10% what happens to you and 90% how you react to it” – Charles Swindoll

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On the Edge: Part 1 Standing on the Sidelines

One of my favorite movies is “It’s a Wonderful Life”.   I love the scene where George Bailey (played by Jimmy Stewart) & Mary Hatch – later Bailey (played by Donna Reed) are at the high school dance caught up in the Charleston contest.  In the scene a jealous rival (trivia moment: played by the actor who played Alfalfa in the Little Rascals) finds out that the gym floor opens up to reveal a pool and that George was dancing right over the opening and that the button to open the floor was right in front of him.  As most of us know, the rival presses the button and after several dance moves the couple finds themselves falling into the pool.

As the couple is dancing they continue to get dangerously close to the edge and can see the reaction of those around them, however; they have no idea it’s because of pending misfortune for the couple.  George thinks that they are being watched because of the great job they are doing.

Points to Ponder:

  • Why didn’t someone tell this couple about the potential harm that was coming their way?  Here is a large group of people standing around this couple just watching and waiting for them to fall in.  Not one person made a move to stop them from falling. (OK, don’t get all goofy about it, I know it’s a movie but it can have real life implications)
  • How many times in our lives do we stand by and watch friends and family on the edge of harm and say nothing because we don’t want to interfere?
  • What would it take to step out of our excuses and at least caution someone of potential harm? I want to be clear, I know it is uncomfortable to step out of our comfort zone and share our concern with them, I also know that there are risks involved such as conflict, loss of relationship as well as the potential to be blamed for some bad outcome, however; there is also the opportunity to help someone move in a healthier direction.

I’ve spoken with hundreds of families and I can share with you that a recurring theme is: we knew something was changing but we didn’t know what to do.  Unfortunately, many times, that led to the family doing nothing.

When you see someone headed for potential harm, whether it is the effects of medication, increasing depression or potential addiction, standing by and watching can lead to the need for re-active decision-making, guilt and unnecessary pain.  Certainly. there is always a chance that we say something and the person still goes down the same path, however; we will never know unless we take that step.

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Strategies for Communicating with Multiple Doctors

Years ago I met a woman at a rehab facility while visiting a family member.  She was recovering from a stroke and looking forward to getting back home.  I acknowledged how well she was doing considering the circumstances.  She said “It all comes down to being in the right place at the right time.”  She went on to explain that she was actually in her doctor’s office, located in the building attached to the hospital when she had the stroke, within minutes they had her in the emergency room.

She then added “It’s my own fault I had the stroke, I went off my blood thinners in anticipation of a procedure with a specialist and didn’t talk to my primary doctor before doing it.”

Unfortunately her story is not unique.  Even though there are more systems in place than ever before to support continuity of care and communication between physicians, I wanted to share some pro-active tips when you or your loved one have multiple care providers.

  • Don’t assume that your doctors communicate with each other (or view updates on your electronic record).
  • ALWAYS bring an updated list of your current medications to EVERY appointment, noting when they are taken and dosage, better yet bring the actual bottles to each appointment.  This way nothing gets lost in translation (including your dentist/chiropractor). 
  • Along the same lines, ask each doctor for a list of the medications they have on file for you to compare to your list. 
  • If you have scheduled a test or procedure with a specialist call your primary doctor’s office to make them aware of it. 
  • When having any tests run, ask them to send a copy of the results to your primary doctor as well.  If they say it’s available on your e-record, politely ask again that they make his office aware of it.
  • You have the right to get copies of your medical records and tests results.  Make sure to ask for a copy for your personal records or understand how to access them from online portals.
  • When it comes to your health, NOTHING is too small to share.  If there are ANY changes in how you feel should be shared with ALL of your doctors/specialists. 
  • ASK QUESTIONS! Many times our visits are a whirlwind of information, however, you have the right to ask as many questions (even if they are the same ones over and over) until you FULLY understand the information being given to you by the provider!
  • You have the right to refuse treatment of any kind until you fully understand why it was ordered and what possible outcomes/side-effects are.

We can’t all be in the right place at the right time when a health emergency occurs.  Making communication with your primary doctor and/or specialist (in the case of an Oncologist) a priority about upcoming tests and procedures, you may be able to steer clear of potential life threatening issues.

For more resources visit: CaregiverLife.com

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Hang onto your Joy

I was listening to a Joel Osteen message about Joy and how nothing can take our joy from us.  This means that no issues with a spouse, illness, loss of job or abilities or challenges associated with caring for an elderly loved one can take our joy away from us. We can however, give it away.

This is quite a revelation!  Even though I have a conceptual understanding of my control over my reactions to people and situations in my life, I was daily giving my joy away to inconsequential events such as being stuck in traffic, fear of running late for a meeting, worry about personal and family health issues.  Now you may think that worrying about health issues is not inconsequential.  Any health issue that you or a loved one is facing is most certainly of consequence.  What is not, however, is the act of worrying about these challenges.

Worrying does nothing to change the traffic pattern, fear doesn’t change what time you get to your meeting and most importantly, worry does nothing to change the outcome of the test to see if the cancer has spread.

Worry and fear can negatively affect your personal outlook, relationships with loved ones and health (which is ironic as that is the very thing you’re worrying about).  We allow worry and fear to steal our joy from us and for what?  Something we have little to no control over.  The test results will be what they will be, worry and fear will not change them, but could hamper our ability to make good decisions about next steps and treatment options.

Studies have shown that there is a strong association between positive health outcomes and people with strong social well-being (happiness & joy that comes from within).  This is great news!  This means that you can have a positive effect on your health by adjusting your focus to things that are positive and joyful!

I’m not saying it’s going to be easy to change your focus to become joy-filled, but there are some steps that can help you start your joy journey today!

  • Focus on the positives – spend time with people who fill you with joy :family, friends, children, grandchildren.
  • Disengage from “drama” people in your life – you know who I am talking about. The people who can turn any story into drama (i.e. – a dog jumping on their leg becomes a vicious attack).  These people especially focus on the potential negative aspects of your situation.  Politely turn down their offers to hang out and focus attention on positive people.
  • Create a Joy Journal – get in the habit of writing down positive experiences EVERY DAY! At the beginning you may have to really stretch to find them (i.e. – I got out of bed today).  After a while you will start to notice that there are more positives in your life than you realized!

I heard this saying “Worry does not change tomorrow’s burdens, but steals joy and power from today”. SO TRUE!

Take hold of your joy TODAY!  Don’t give it away no matter what the circumstance.  Things may be stressful, life can be challenging, but you have the power to find the joy in life no matter what else is going on around you.

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Let Go of the Guilt

What is Guilt?

Unwarranted response to an imagined offense

Unless you actually killed someone (which I’m assuming 99.9% of my readers have not) then you are imposing this idea of having “wronged” someone else.  Caregivers feel guilty for many reasons, however; if you take time to look at the needs and circumstances at the time of your decisions you will find, more often than not you did the best you could with the information you had.

Based on impractical expectations we put on ourselves

Caregivers tend to be over-achievers which means that we have the tendency to put unrealistic expectations on ourselves when it comes to caring for someone we love.  Remember, you are human and as a human you are not capable of being perfect.

(See Mistakes Will Be Made)

A story we have created about a situation

It has been said that hindsight is 20/20, however; in many cases hind sight can be skewed by perception and emotion.  Focus on the facts of the situation as opposed to the emotional response to the circumstances.

Setting the Stage to Let Go

  • Trying harder isn’t working – you can try as hard as you want, however; it really is an exercise in futility.  Base your evaluation on facts vs emotion.
  • Guilt destroys people emotionally and physically – letting go of guilt is the best thing for your mental and physical well-being.  The pressure that carrying around guilt causes can affect your physical health, emotional health and cause stress in your relationships.

Evaluate

  • Did I purposely set out to harm my loved one? – Most likely the answer is a resounding NO
  • Did I make decisions as best I could under the circumstances? – Hind sight may be 20/20, however; we don’t have the luxury of this insight while making sometimes major life decisions for others.  Evaluate your decisions based on what you knew to be true at the time the decision was made.

Most importantly the only person who can make you feel guilty is you.  Make it a priority to forgive yourself (see Forgiving Myself)

For more support visit CaregiverLife.com

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