What it means to be a family advocate: Day 1 of 30 day Family Caregiver Series

30 day Family Caregiver Advocacy Series

 

PEACEimagesfamilyhand_TandyELisala 

When I became an unexpected family caregiver overnight, everything swirled around in my head. I knew I had a responsiblity to be a voice for my parents when they didn’t have one. I assumed the caregiver role for both parents simultaneously for different reasons.  How exactly was I going to do that? Who was looking out for us? How was I going to keep them safe? Who should I talk to about what? What exactly do I look for? What kind of care would they receive? I couldn’t be in three places at a time! How in the hell was I going to handle everything when my life was already overflowing!?! Over the next 30 days, we’re going to cover a very important aspect of family care giving: advocacy.  This series includes the following 7 parts:

 

 Part 1: What it means to be a family advocate  (2)

 Part 1:  3 reasons why advocacy is a BIG deal

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

 Part 3:  The ultimate roller-coaster (2)

 Part 4:  The 3 C’s that make all the difference (3)

 Part 5: The surprising truth about who needs an advocate (3)

 Part 6:  5 ways you must keep your loved ones safe (5)

 Part 7:  What? I have how much time to decide where they go? (12)

 

The corresponding ( ) after each item is the number of posts per part – say that really fast 10 times – kidding🙂.    I am going to give you the nuts and bolts. You’ll walk away with specific things you can do in each area. In 30 days, you will have what you need should you become an advocate for a loved one. 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 one, this is also for you. This is for you is you think you will need care one day. So, let’s get started!

 

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

I’m a family advocate, now what?

 There are lots of different types of advocates in the world. For purposes of this blog series, we are talking about family advocacy in the realm of physical, emotional, mental, spiritual and financial areas of life.  Typically, the first aspect that a family advocate handles is the immediate health matter(s).

“I think that a caregiver has to ultimately be the advocate for the person
with the illness and that means being their ears. I think it’s fair enough
for the caregiver to be there with the pencil and the paper and asking
the questions because when you’re the one with the illness, it’s so
overwhelming sometimes that you don’t hear what’s being said to you.”
~ Meredith Vieira

When your loved one asked you to take on this role should it be necessary, you probably said, sure and a little voice in the back of your head said, it’ll be okay, nothing is going to happen. I pray you are right. For 75 million people, the reality is ‘they’ are an advocate for a loved one due to illness, injury or aging. Unfortunately, this job doesn’t come with a manual. I am changing that!

Whether it’s gradual or sudden, whether it’s due to illness, injury or aging and whether you are an advocate close to home or long distance, here is my Top 10 list of what it truly means to be an effective advocate:

 

           1.     Take your responsibility seriously. Making the right decisions at the right time for the right reasons.  Sometimes, you may want a  certain outcome or you simply want what YOU want; not necessarily what they want or what is in their best interest.

2.     Be organized. Be very, very, very organized.Communication_Tandy_Elisala

3.     Rally the troops. Regularly communicate with all who need to know what’s going on. Call on your support system to step it up and assist where possible.

4.     Balance independence and safety. It is difficult to make changes to a loved one’s life and routine; particularly when they don’t think they have limitations.

family_support_Tandy_Elisala

5.     Be in constant communication with all medical providers. Visit, stay, rotate visits or call. You must be available at all times; particularly in a fragile health situation. Be visible and assertive. It’s your loved one’s life you could be talking about.

6.     Treat them with the dignity and respect they deserve.  

7.     Balance this role with your already full life responsibilities. You had an already full life before becoming a loved one’s advocate. How do you integrate everything and remain sane?

 sandwich_generation

 

8.     Working through all the frustration, guilt, exhaustion and overwhelm… while still staying on top of things.womanstress_Tandy Elisala

 

9.     Mediating or being strong enough to tell family or other interested parties ‘how it is.’ Money and tragedy can do interesting things to people. 

10. Be on top of everyone involved in your loved one’s care. There are several aspects to this. Thus #5 may look similar to this but we’ll cover many other aspects off care giving advocacy.

Over the course of 30 days, we’ll cover each of these 10 items in detail and then some!

Next up in part one: 3 reasons why advocacy is a BIG deal.

 

Your turn: Have you been or are you a family advocate? If so, what else would you add to this list? If not, which of these 10 things do you think would be most difficult to do or manage? Please comment below!

 

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 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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Tandy Elisala

Family Caregiver Coach, Cancer Empowerment Advocate and Chief Inspiration Officer at Center for Inspiring Greatness | Empowered Family Caregiver
Tandy Elisala is passionate about helping family caregivers go from being overwhelmed and stressed to empowered and calm. Tandy went through cancer four times and learned how to heal using conventional, complementary, and alternative therapy. Tandy left her corporate career to take care of both parents simultaneously while raising three kids as a single mom. She took care of both parents for 2 1/2 years until their respective deaths. Tandy now teaches what she learned on her journey. Tandy is a family caregiver coach, a multiple best-selling author, inspirational speaker and mom to three adult kids, one angel dog and one diva cat.

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20 replies
  1. Dawn Lanier
    Dawn Lanier says:

    What a wonderful idea to do a Family Caregiver Series Tandy! It is bound to be a valuable resource for so many people suddenly thrust into that position. I am sharing this. Keep up the good work – and much success with your book!

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Thanks so much Dawn! Thanks for your support, sharing and comments. I am excited about this series, my book and all my caregiver related work out in the world!

      Reply
  2. Rena McDaniel
    Rena McDaniel says:

    Great series! I am fairly new to being a caregiver. But want to do the best possible job. I think the hardest part for me is being a caregiver to someone who thinks they don’t need one. My mom has Alzheimers and I also have a hard time knowing when to let her have her indepence and when I should step in. Like with her medication, I know she sometimes forgets but when I try to be in control she doesn’t allow it. Also with finances she lives on a fixed income and I know she isn’t writing everything down but once again she hides what she is doing. How do I get her to let go. Also, I noticed you were sick while being a caregiver, I have Feltys syndrome a rare form of RA and sometimes I when I’m feeling bad I feel so overwhelmed, how did you cope?

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Hi Rena, thanks so much for stopping by and sharing your experience. Caring for someone with Alzheimers or dementia certainly ranks HIGH on the stress scale. My dad suffered severe Traumatic Brain Injury and often had memory loss accompanied with personality shifts making him ‘challenging’ to be around at times. With his medication, one thing I did is put all his medications together in AM/PM/Daily plastic containers for the week and I put all his medication bottles out of reach. I had a monthly calendar out and we had a process where he would check off the calendar day when he took his medication. We were using a diary for awhile but that got lost… A calendar seemed easier to display and was a great visual for him. This allowed him some independence in taking his medication and helped us rest easy knowing he was on track. If you haven’t tried this approach, I recommend trying it out. Let me know how it goes! If you have already tried this approach, let me know that too and I can give you some more ideas.

      Finances can be a sticky wicket:-) The questions I would ask before knowing how to proceed include: Do you have a durable power of attorney in effect that includes money management? What stage of Alzheimers is she in? Do you have siblings and do you all agree on a course of action? What conversations with your mother have occurred? Is she living at home, in a home, with a relative/you? Do you have access to her account or statements to verify her accounts aren’t in jeopardy? Are her financial decisions causing a negative impact on her short or long term living expenses? How you help you let go depends on the answers to these questions. I will say that the short answer is if you have the authority to do so, you can physically take her resources away and take care of her finances. *However*, I wouldn’t recommend this approach unless there are serious consequences and/or you haven’t discussed the situation with her. Often times, having s.o.m.e.t.h.i.n.g. to be responsible for helps give care receivers purpose. We need to tread lightly when removing any perceived independence or her behavior could manifest negatively in other ways.

      Self-care is a whole separate issue! I did write a few articles about the importance of self-care and how caregiving can make you sick if you don’t take care of yourself. In my book, Healing Through the Chaos, I dedicated a whole chapter on self-care. The short answer on how to cope with caregiving when you feel ill as a care receiver is to have boundaries, have and use your voice, recognize that your needs are just as important as your mother’s needs are, you MUST get enough rest and remember that you can’t give to others effectively if you aren’t taking care of yourself. Easier said than done, I know… I have a practice of taking 10 minutes a day, at minimum, to sit with myself and check in with my body and notice what’s going on. I then do breathing exercises to help release pain and tension from the body. There are a whole host of specific things I do in this area but there’s one idea for you.

      Let me know if you have any questions or want to chat further!

      Reply
  3. Nancy Kay
    Nancy Kay says:

    What a valuable and insightful series you are offering! As a former news reporter, I believe that knowledge is power and the more we can find out and learn about, the more we are able to provide guidance and support for our loved ones.
    My brother is currently a full-time caregiver to our father and he has so much on his plate that he often gets overwhelmed and depressed. I have encouraged him to create a timeline of what needs to be done and then check into whatever resources can help make things easier over the long term.

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Hi Nancy, thanks so much for visiting my site and for your nice words:-) Having been a full-time caregiver for my parents simultaneously, I understand what your brother feels. Sometimes, taking things an hour at a time is all you can handle. Because I encountered the issues of overwhelm, depression, exhaustion and stress on top of having to figure out what to do next, I wrote a book called, Healing Through the Chaos: Practical Care Giving. I walk family caregivers through the care giving stages with tips, lists and questions along the way. I did things the hard way and I don’t want others to have to go through it the way I did. Your brother may benefit from this resource and help lighten his load:-)

      Reply
  4. Peggy Nolan
    Peggy Nolan says:

    Hi Tandy! Care-givers often become co-survivors – at least in the realm of a serious illness, like cancer. Unfortunately, the care-giver cannot do the other person’s mental and emotional push-ups (as much as they’d like to) and that often leaves a care-giver feeling helpless. From my perspective, when I went through breast cancer, I ended up supporting my co-survivors, especially my sister. I had to find my voice, speak up, and let others know what I needed and when I needed it. They couldn’t fight my fight and I had to teach them how to become cheerleaders.

    When it comes to other types of caregiving – you are spot on. Caregiving can lead to burnout very quickly. Since I help others with the overwhelm in their life, who knows, you and I could have something synergetic here. So glad you connected with me on my website!

    xo
    Peggy

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Hi Peggy, thanks for stopping by! You are 100% right on target about caregivers often becoming co-survivors in the case of serious illnesses. When I was going through cancer and care giving for my parents, I had to lead the way with the positive mind set. Finding your voice and speaking up is such a delicate thing, isn’t it? If you aren’t accustomed to speaking up, learning to do so when life is really rough can be that much more difficult to do. I love synergy! When I was on your site, I thought, ya’ know, I bet there is a way for us to do ‘stuff’ together. Let’s stay connected! Thanks for your comments.

      Reply
  5. Francene Stanley
    Francene Stanley says:

    What a wonderful, informative post. I’ve never taken this responsibility. However, my husband cares for me. I have a walking disability. From my point of view, the most important thing is for me to maintain my dignity.

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Francene, thanks for your feedback on this post. I hope you are able to follow the entire 30 day series. Your husband will thank you:-) I agree with you that maintaining your dignity is so wildly important yet it’s something that not everyone thinks about or places a priority on. It’s the one thing that can create tension and all kinds of issues among the care receiver,their family and health care workers. This was one issue I paid close attention to with both of my parents.

      Reply

Trackbacks & Pingbacks

  1. […] We kicked off this series with a top 10 list of what is 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 […]

  2. […] We kicked off this series with a top 10 list of what is 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 […]

  3. […] We kicked off this series with a top 10 list of what is 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 […]

  4. […] We kicked off this series with a top 10 list of what is 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 […]

  5. […] We kicked off this series with a top 10 list of what is 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 […]

  6. […]  We kicked off this series with a top 10 lists of what is 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 […]

  7. […]  We kicked off this series with a top 10 lists of what is 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 […]

  8. […]  We kicked off this series with a top 10 lists of what is 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 […]

  9. […]  We kicked off this series with a top 10 lists of what is 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 […]

  10. […] 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) […]

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