30-day Family Caregiver Advocacy Series
Day 6 of 30: Warning: Self-Care and Advocacy are Mutually Exclusive
We are in day 6 of our 30-day family caregiver series on family advocacy. In the spirit of giving support and advice for caregivers, 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 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 to staying organized; (Day 3). I showed you ways to be an advocate and affirmed that sometimes it’s okay to upset the applecart on (Day 4). We covered the four things our lives depend on in (Day 5). Today, we’re tackling self-care and advocacy. Even typing these two things together still causes this body to twitch at times.
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.Click to tweet 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.
Part 3: The ultimate rollercoaster (Day 6 & 7)
· 1. Warning: Self –Care and Advocacy are Mutually Exclusive (Day 6)
· 2. Frustration, guilt and overwhelm: The ultimate rollercoaster (Day 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)
Day 5: Warning: Self –Care and Advocacy are Mutually Exclusive
I am responsible for my loved one’s care. What? Where the hell is my advocacy manual? They must have forgotten to give it to me. The same thing happened when I brought my kids home from the hospital! No parenting manual ~uuggghh .
Balancing your advocacy role with your already full life is quite the roller-coaster. As if that isn’t enough, you also have frustration, guilt – on some level, exhaustion and overwhelm. The tug of war within your body eventually wears on you; yet you don’t have time to sit around and wallow because you must stay on top of things. One oversight can create yet one.more.thing. to do.
“We have a responsibility to be a voice for our loved ones when they don’t have a voice. “ ~ Tandy Elisala
Balancing this role with your already full life responsibilities
Imagine having a conversation with a friend about how busy your life is and how you aren’t sure how you would fit something like school, exercise, volunteer work or time for a hobby into your already full life. Then, you get a phone call that changes your life. You suddenly find yourself taking care of a loved one. This could be in person or long distance. It could be in a hospital, in their home, in your home or in an assisted living facility. Suddenly, you find yourself in new territory. A life you thought was under ‘control’ now suddenly rips through your home, heart and body like a hurricane and you wonder what the hell this means for everyone in your life and your career/job, as applicable. What about your retirement savings? If you are raising a family and now find yourself caring for a loved one, overwhelm doesn’t even begin to underscore the changes in your life. If you are managing care from a distance, how do you know things are going as they should be?
Yet, you must figure it out. Your loved one’s care depends on it. Their life may depend on it. There are a few key things that will help you in your journey as an advocate and help you stay sane. They include:
a. Get and stay organized. Create a patient medical and life management system. My detailed organization checklist here is a good place to start.
b. Ask for support. Now, more than ever, is the time for help. Click to tweet
c. Be present, to the extent possible, when doctors and case managers visit your loved one. If your loved one is in a hospital, this may mean spending the night. I found 85% of our doctors visited and evaluated my dad between 5:00am – 6:30am.
d. Ask questions. Talk to the case manager assigned to your loved one at least twice weekly; if not more often, as the situation warrants. Talk to the nurses. Get to know the nurses and other professional staff involved in your loved ones’ care. Click to tweet
e. If you work outside the home, discuss your situation with your supervisor and the appropriate human resources staff. Depending on the situation, discuss your family medical leave benefits, alternative work schedules or anything else specific to your work place that can be done to help you during this time. NOTE: Many of my clients experience more absenteeism and reduced productivity during intense care giving phases. I realize all companies differ in their values, mission, management styles and goals. That said, it’s important to note that companies are in business to make money. They want to see a good bottom line. It’s important to be honest and work together through this difficult time. If you feel you can’t be open and honest with those that need to know your needs, you probably want to reevaluate your long-term outlook with the company.
These are just some of the basic things you’ll want to do. Consider it part of your advocacy manual!
Next Up: Part 3 ~ Frustration, guilt and overwhelm: The ultimate rollercoaster
Your Turn: Are you or have you been a family care giving advocate? What resources did you use to help guide you in this role? What do you think is the most challenging aspect of being a caregiver? Please comment below!
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