3 reasons why family advocacy is a BIG deal: Day 2 of 30 day Family Caregiver Series

30-day Family Caregiver Advocacy Series

Part 1: What it means to be a family advocate:   3 reasons why family advocacy is a BIG deal

We are in day 2 of our 30-day family caregiver series on family advocacy. This is such an important aspect of family care giving and we are putting all aspects of this into bite size chunks. By the end of this series, you will have the tools, checklists, and information needed to effective serve as a loved one’s advocate.  We kicked off this series with a top 10 list of what is means to be an effective advocate. (Day 1)

If you are an advocate or know someone who is an advocate, this is for you. If you anticipate you will make health care decisions for a loved PEACEimageshelpinghand2one, this is also for you. If you would like to avoid the care giving mistakes I made, this is definitely for you. Lastly, this is for you if you think you may need care one day.

 

This series includes the following 7 parts:

Part 1:  What it means to be a family advocate.

  • I’m a family advocate, now what? (Day 1)
  • 3 reasons why family advocacy is a BIG deal ( Day 2)

 Part 2:  3 smart ways to be a voice for loved ones  (Day 3-5)

  • The ultimate guide to staying organized
  •  Don’t be afraid to upset the applecart
  •  4 things your loved one’s life depends on

Part 3:  The ultimate rollercoaster (Day 6 & 7)

Part 4:  The 3 C’s that make all the difference (Day 8-10)

Part 5: The surprising truth about who needs an advocate (Day 11-13)

Part 6:  5 ways you must keep your loved ones safe (Day 14-18)

Part 7:  What? I have how much time to decide where they go? (Day 19 – 30)

 

 

Part One: What it means to be a family advocate

 

3 reasons why advocacy is a BIG deal

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Here are 3 reasons why advocacy is such a BIG deal:

  1. Their lives are in your hands…literally.

 

In situations where your loved one can’t physically (or effectively) communicate, you are their eyes and ears. It is your responsibility to proactively and effectively communicate with all persons involved in their care, ask the right questions of the right people and ensure they get proper care. You must stay on top of everything.

 

This includes making sure all treating medical personnel understand your loved one as a whole person; including any cultural influences affecting care. It’s important everyone understands your loved ones’ habits, personality and their limitations!  It is also vital you share what your loved one’s non-verbal commands or habits are, how you know they are in pain, etc… to facilitate effective communication.

 

For example, in the case of my father, he could look you straight in the eye and tell you something and if you didn’t know it, you would take it as truth. What people didn’t know is my dad had severe traumatic brain injury resulting in short term memory loss. He may have been able to tell you where he was or what his name was but he couldn’t tell you what he had for breakfast!

 

The bottom line is that you are the one who ultimately makes their care decisions.  Family members can argue and say what they think should happen. The bottom line is it isn’t about them. It isn’t about you. It’s about your loved one and what he or she wants and needs.

We have a responsibility to our family to be a voice when our
loved ones need it most; when they are unable to do so
themselves…Being their
voice, eyes, and ears is the best way to get full information,
minimize concern, and ensure consistency of care. ~ Tandy Elisala, Healing Through the Chaos

 

 

2. Your attitude can affect your loved one’s health.

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I strongly believe in the power of our minds to do, be and have anything.

When a loved one is seriously ill or injured, they need reassurance, positive and uplifting energy around them. Even if they have a tendency to be negative, by you putting out negative energy through your thoughts, words and behavior, you are impacting your loved one’s subconscious mind on some level.  Whether good or bad, this can impact their well-being.

3.  Unnecessary time, tests and money can be spent.

Your life involves being on call 24/7.   This can mean answering calls at 2:00am. Now more than ever it is important to exercise self-care and life balance. I know this can be easier said than done. Care giving can be one of the most overwhelming jobs; both physically and emotionally.  The advocacy part of care giving, in my opinion, is what creates ‘tension’ between caring for your loved one and caring for yourself.  We need self-care yet if we aren’t on our game, surprising things can happen.

For example, after being up close to 34 consecutive hours, I was in the ER with my father. I communicated everything to the medical providers and they started down a path of correct tests. Thinking he was in good hands, I left to nap for a few hours. By the time I returned, my dad had thousands of dollars worth of unnecessary tests completed.

Without going into details, two things happened: first, during their shift change, some information wasn’t relayed. For the record, this was a RARE instance. Typically, medical personnel were and are fabulous…and one of us was almost always with him. Second, the staff listened to my dad talk with a straight face (my dad truly believed everything he said), didn’t consult with others and this was the result.

One time my mom was hospitalized for a physical condition. She had an established mental condition that was well controlled with medication. While with her, I talked to the staff about ensuring all her medications were administered and thought everything would be okay. At the time, both my parents were in different hospitals at the same time. I left my mom to go visit my unconscious dad thinking that my mom could at least physically speak for herself and all would be okay. It wasn’t okay. She didn’t get her psychiatric medications and they talked of transferring her to a different ward.

Things don’t have to be this ‘drastic’ to cause unnecessary time and money. My point is integrating patient advocacy into regular life and care routines is not as simple as it may seem. You MUST find a balance of patient care and self-care. This is a topic for an entirely different series all together!

SOSHealth_Tandy_Elisala

 

 

Here are some assumptions I’m making about advocacy:

1.   You have written instructions of your loved one’s wishes.  If not, contact those you know you are a Power of Attorney (POA) for, ensure their wishes are in writing and you either have a copy of the POA or know where it is. If you aren’t sure who the POA is for a loved one, contact them to discuss.

2.   You at least have verbal instructions of their wishes.  It’s best to have it in writing for many reasons. I can’t stress this enough.
3.   You have demonstrated the ability to be objective, be compassionate, be honest, make tough decisions, and honor your loved one’s wishes.  Because you found this article, you rock! In some way, shape, or form you wanted to get more information on the topic. This means my last assumption is correct and you are an awesome person!

Next up:

Part 2:  3 smart ways to be a voice for loved ones  (Day 3-5)

  • The ultimate guide to staying organized
  • Don’t be afraid to upset the applecart
  • 4 things your loved one’s life depends on

 

Your turn: Have you been or are you a family advocate? If so, what has been the most difficult part of this job for you? Is there something you are struggling with and would like some help? Please comment below!

 

Order my new book

 Healing Through the Chaos: Practical Care-Giving is available at http://www.tandyelisala.com Tandy_Cover_HealingThroughTheCHaos300dpi  Healing_Through_the__Cover_for_KindleTandy_Cover_HealingThroughTheCHaos300dpi

 

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9 replies
    • Tandy Elisala
      Tandy Elisala says:

      Hi Sue, thanks for stopping by! I’m glad you find value from this series. My goal is to make things as thorough and organized as possible for caregivers… particularly when they need it most.

      Reply
  1. Rena McDaniel
    Rena McDaniel says:

    Thankyou again for this series. I am taking takihg your advice on my previously stated problems. We’ve been snowed in for the last three days but we are going shopping for medicine divider (sorry temporarily braijdead and can’t remember what is called but I know what it is). Still trying to figure out my best approach with my other issues. As far as the taking care of me part, I try to incorporate it when I can. Usually we all retire to ourvrespective rooms in the evening. My husband goes to bed early for his shift so I get a couple of good hours me time, which I spend reading everthing I can find on Alzheimers or rheumatoid arthritis and taking notes. I’ve turned into a very boring person lately. Lol. Beacuse we are new to tye area and I haven’t madeva single friend here I became depressed for awhile and things went downhill quick. I started writing all my crazy stories down about how we deal with mom’s Alzheimers and my RA . My SIL told me I should start a blog (I didn’tbeven know what it was, heck I didn’t even have a facebook) so I got my daughter to help me, first I joined the 21st century and got FB, then I started my blog. It has done remarkable things for my mental state writing these stories and seeing the humor. My first one January 14th and I’ve written one everyday since and I even had one of my stories published on alzheimerreadingroom.com. I was so proud. If you get bored and want to take a look it’s at rm29303.blogspot.com.
    Rena McDaniel recently posted…SNOW IS OVER BUT CABIN FEVER REMAINS!My Profile

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Hi Rena,
      Thanks for your comments. It’s great to have you back. I am SO incredibly proud of you for starting a blog to document all of your experiences. This is so healing. When you talk about humor, I smiled because humor is so important. Finding humor in the little things helps with well-being and can help put things in perspective. I’m sorry you are in the part of the country where you are snowed in. Positive and sunny thoughts coming your way. Stay safe and warm. I’m going to check out your blog!

      Reply
    • Tandy Elisala
      Tandy Elisala says:

      Thanks so much Sharyn. I was thinking the same thing about another book:-) Actually, I’m getting ready to launch a family caregiver coaching program.

      Reply

Trackbacks & Pingbacks

  1. […] means to be an effective advocate. (Day 1) then, I gave you 3 reasons why advocacy is a big deal (Day 2).  Then, I shared the ultimate guide to staying organized; (Day 3).  I showed you ways to be an […]

  2. […] means to be an effective advocate. (Day 1) then, I gave you 3 reasons why advocacy is a big deal (Day 2).  Then, I shared the ultimate guide to staying organized; (Day 3).  I showed you ways to be an […]

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