National Invisible Chronic Illness Awareness Week

How To Shamelessly Get What You
Need When No One Seems To Care

Carmen Leal, Author
Twenty-Third Psalm for Caregivers
Coordinator, Someone Cares Christian Caregiver Conference

Carmen Leal knows first hand the stresses and the joys of caregiving, as she served as her late husband's caregiver for twelve years.. Out of her experiences God birthed a ministry to families with Huntington's disease and those in a caregiving situation. She is the author of nine books including The Twenty-Third for Caregivers, The Twenty-Third Psalm for Those Who Grieve, Faces of Huntington's, and Portraits of Huntington's. Her writings have been featured in Guideposts, Focus on the Family, Decision Magazine, the Orlando Sentinel, and numerous national and local publications. Her personal experience stories have appeared in dozens of compilation book series.

Her wit, humor, and poignant personal observations, coupled with her down-to-earth style and common sense approach to dealing with life, inspire her audiences. Through her transparency, she has the ability to encourage and bring hope to all. Using songs to enhance her message, Carmen weaves music into her presentations using a rich clear voice. Carmen lives with her family on the island of Oahu in Hawaii. She is currently organizing the Someone Cares Christian Caregivers Conference in October. See http://www.someonecaresonline.com .

About the workshop: How To Shamelessly Get What You Need When No One Seems To Care This workshop focuses on creative and positive ways to cut through the red tape facing caregivers and their families. This interactive brainstorming session will help families understand how to effectively interact with church, social services agencies, and medical decision makers to get what they need to provide the best level of care for their loved ones.

Visit her web site

How To Shamelessly Get What You
Need When No One Seems To Care

Host_Laura_LRae(P) --- Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Laura (a.k.a. "LRae" to many of you), and I'll be your host for this hour. We will open in prayer; then our guest will present the topic, after which there will be a question and answer period, then I will close in prayer.

I'm excited about our sesssion this hour, "How To Shamelessly Get What You Need When No One Seems To Care" with Carmen Leal. Carmen Leal knows first hand the stresses and the joys of caregiving, as she served as her late husband's caregiver for twelve years.. Out of her experiences God birthed a ministry to families with Huntington's disease and those in a caregiving situation. She is the author of nine books including The Twenty-Third for Caregivers, The Twenty-Third Psalm for Those Who Grieve, Faces of Huntington's, and Portraits of Huntington's. Her writings have been featured in Guideposts, Focus on the Family, Decision Magazine, the Orlando Sentinel, and numerous national and local publications. Her personal experience stories have appeared in dozens of compilation book series.

Carmen will spend some time sharing with us and then she'll do her best to answer as many of the questions you have as possible.

Let me pray and then I'll turn the floor over to Carmen. Lord, than you so much for this opportunity to hear from Carmen. We thank you for this week and all the opportunities we have to learn and grow and be stretched, strengthened, and encouraged. Please fill Carmen now with your perfect peace and speak through her as her heart desires to be a blessing to us. Give us your ears to hear and hearts eager and ready to obey what you have for us. In Jesus' name...Amen.

Carmen, welcome. The floor is yours.

[Carmen(P)] Thank you for coming. I expected like 5 people. This is great! I will do my best to make this technology work for me during this chat. And I hope each of you gets something out of our time together.

Okay, so I figured I could cut and paste into my box and it's not letting me. First glitch so this will be slower than I had hoped.

Good morning from sunny Hawaii. Today we are going to talk about how to shamelessly get what you need when no one seems to care.

Do any of you feel as if no one cares? Trust me, I can see your hands waving frantically in the air. I do not have an invisible illness, but for years I was married to a man with a brain disease. He didn't look sick for a long time but he couldn't work and people couldn't figure out why I needed help.

We actually did Huntington's Disease with no insurance and moved to a new state with zero support.

As I look back on what God did for me during my cargiving years I am amazed at how he helped me through others. And the key to shamelessly getting what i needed was to ask.
Now I know that sounds easy, but how many of you have a heard time asking? Probably everyone of you. Why? You got tired of being told no. You don't know who to ask? You don't know how to ask. The list goes on and on. We've all heard that it is more blessed to give than to receive and by not asking we are robbing someone of the blessing of receiving. Correct? So the first thing I want to share is the art of asking.

It's good to ask for help. You need to not be embarrassed. Don't worry that people will judge you. Don't wait till it's too late. Think what might happen if you don't get help. Think what will happen if you do!

Decide what the problem is and what help you need.
Think about whom you can ask for help
Think about what you'll say when you ask for help
Finally, as Nike says, Just DO It!

One thing I constantly had to tell myself is that getting help when I needed it was part of being responsible -- to myself and to those who depended on me. So, now that we know you need to ask for help, what do we need to realize?

PEOPLE TRULY DO WANT TO HELP!

Yes, I am yelling because sometimes we hear no so often we no longer believe people want to help. Why do people want to help? Helping others makes people feel good. Programs are out there and their success lies in attaining program goals. So whether you are asking relatives, friends, church members, or government programs, remember we have to think outside of the box.

Let me give you an example. My husband was on a feeding tube. The cost of his 5,000 calorie a day diet was huge. I had teenage boys and their food was costly. I tried to go to government programs, remember we had no insurance, but he was too young for seniors programs. We made too much money to qualify. What I ended up doing was calling the largest local hospital and asking them what they did with their Ensure when it expired. When it expired it was actually still good. I was told that on a certain day of the week all of the Ensure went to the loading dock to be taken to the dump and thrown away. Thrown away! I asked her if someone drove there and picked it up was that a problem. Nope. So for two years that is how I fed my husband.

I thought outside of the box. A little shameless? You bet. Did it work? Absolutely! I think we all need to be SMART when asking for help.

S = Specific/ Requests need to be straightforward and emphasize what you want to happen. Specific si the WHAT, WHY, and How of the SMART model. Next is M.

M= Measurable. If you can't measure it you can't manage it. Establish concrete criterai for measuring progress toward the attainment of your request. Often what you need can't be gotten immediately or it might take going through a number of people or departments or doctors. Understanding the progress, and measuring the steps, will help you stay on track.

A = Attainable. Sometimes we set goals that are so out of reach that they will discourage you. The key is to continuously ask for and receive help by having a positive outlook and believing you can succeed.
Attainable? Asking your church youth group to come over and clean house because you know they are looking for service projects.
Unattainable? Asking your in-laws to pay for a cleaning service when they have proven over the last 1o years to think you are lazy, not sick, and they are skinflints.

R = Realistic It goes back to what I said about cleaning. If your church has a youth group of 7 kids the request might not be attainable and therefor is unrealistic. But if they have 100 kids it might be both attainable and realistic. Remember that people and organizations have limited time and resources just like you. Understand what they are capable of doing before asking something unrealistic.And the last letter is T which = Timely.

T = Timely . Give a timeframe for when the task needs to be completed or the request fulfilled. Putting an end point to your request gives you a clear target to work towards. And if someone doesn't meet your request by the deadline that frees you up to ask someone else. (P)]

I had planned on doing more today but I value your time and we got a late start. I am going to open up for questions. You can ask very specific or broad and I'll answer as possible. Just know I am a slow typist!

Host_Laura_LRae(P) --- I have several comments/questions in the que so we'll do our best to get to as many of you as possible

[Carmen(P)] The question on my screen says that when she asked people to help is when she lost friends. I understand exactly what you mean! The same thing happened to me. What I had to realize is that some friends are fair weather friends. That to me means they are not real friends. After the first few times of being rebuffed I realized I needed to expand my circle of friends. Honestly, I got more support from people in disease focused support groups, charities, and non church friends. Really sad, but true. The other thing to remember is that some friendships have a timeline and maybe it's time to move on. I always asked God to help me know who to ask. And I always asked small things and then built on them as I felt comfortable.

The question is about rejection. You are 100% correct. Rejection hurts. Here you are in physical pain and then you get rejection heaped on you on top of that? Not fair? The way I was able to handle it, and i know it sounds cliche, is to tell myself that Jesus too was rejected. In fact I have rejected Him do often in my life! And again I have to say that by expanding your circle to other people it might help. Let me give you an example.

When I was at the height of my caregiving woes, no money, no job, no family, no friends, no church. I cried out to God. And this is what he told me. And, trust me, I wanted to lash out at him for the answer. The answer was, "Help someone else." What? But what I did was I got a church directory and started praying for others. And I started calling and sending notes. I just prayed and started. A funny thing happened. I met people on the phone I didn't know because it was a new church for me. And my asking them how I could pray for them opened up a whole new circle of friends. and when I felt comfortable I could ask for and receive help. Maybe I called one person and left a 30 second message. You can do that. Ort I sent a card. You can do that. Reach out to others because someone else needs help. You can not out give God. And when I starting giving in small ways God led people to me and I was able to ask and receive help.

Great question on the floor! From the time we were babies we have been trained to do it ourselves. Now, all of the sudden we are supposed to ask someone to do something we mastered and did 10 years ago? I'll tell you what I had to say to myself over and over. Get over yourself! I had to reassess myself and what God wanted of me and wanted to do THROUGH me. Whether it's pride or feeling no one else can do it better or any other thing, get over it. And remember, someone else is waiting for the blessing you will give them because people truly do want to help. Not everyone every time, but lots do.

Host_Laura_LRae(P) --- Our hour is almost up. Carmen, thank you so much for sharing and blessing us with your experiences and words of wisdom.

[Carmen(P)] I wanted to share that I have a handout that didn't make it to be posted for some reason. If any of you would like a handout please email me at carmen@carmenleal.com and I'll be happy to pass it on.

Host_Laura_LRae(P) --- Carmen has offered to stay a little longer, but remember, the next session is only an hour away....Don't BE Invisible: Workplace Success with INVISIBLE Chronic Illness

[Carmen(P)] Wow, sounds like our time is over.
I want to thank you for being patient with me through the technical problems. Evidentally this chat room is not Mac approved. and so I couldn't cut and paste as I normally would.

Host_Laura_LRae(P) --- Let me close in prayer and then Carmen will stay as long as she is able to. Lord, thank you that You are our Jehovah Jirah that provides for all our needs. We thank you for how you've shown Carmen how to get help and we ask that you would teach us how to ask and who to ask. Show us what we need to do in order to glean the lessons you have for us from this session. We pray that you would give us great love and grace for those who just don't understand us and show us how to love them and when and who we need to "move on" from. Teach us how to be a blessing when we're often the ones who so often feel the need of blessing. We love you and thank you for taking care of us and being there for us. In Jesus' name...Amen

[Carmen(P)] Thank you again for your patience. I truly know what it's like to be in need and have no one respond or, worse yet, ridicule you.

Host_Laura_LRae(P) --- Transcripts of this session and all the rest should be available on the site in 2-3 weeks

[Carmen(P)] Thank you again and if you have individual questions or would like the handouts please email me at carmen@carmenleal.com Aloha

Host_Laura_LRae(P) --- Thank you again everyone for coming! We're so glad you came and we hope and pray you experienced blessing during this time. Please join us for as many sessions as you can this week. There are so many good ones!