30 day Family Caregiver Advocacy Series
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.
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.
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?
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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