A Positive Perspective

It is important to maintain a positive perspective while living with a chronic illness or disability. Life still happens; you have a family to raise, a marriage to nurture, work to be done both in and outside of the home. Here are some ways to help you stay focused on the positive.

Keep things in perspective
It is easy for the illness or disability to become the main focus of your family's life. Work on keeping the illness as only a part of your life. Do not let your life be defined by the illness or disability. Keep up with family, friends, activities, and everyday life.

Keep the family routine
Work to maintain your family's "normal" routine as much as possible. If you used to coach your son's basketball team continue coaching. Go on vacation, go to family gatherings, have the birthday parties. Schedule time together, as a family, that is not involved around the illness. Schedule time away with your spouse. Stay connected with your other children. Talk with them, listen to their needs and concerns; help them to learn how to deal with their sibling's illness. Have fun and laugh together as a family. What you do and how you act, as a parent, will be a great example for your children.

Manage the illness
Work on ways to manage the illness as you learn to cope with the day to day challenges. Stay organized with your medical information. The Coming Home Medical Organizer is a great tool to help you organize and maintain all of your medical information. Communicate with your family, doctors, schools, what your needs are. Work on things that you can control, meetings, doctor appointments, activities with your children, taking a day off. Let others help you. Create a network of support from extended family, friends, your church, and neighbors.

Helping Others
Go outside of yourself so that the illness does not eat you alive. It is easy to become so wrapped up in the "illness or disability" that you can lose sight of everything else around you. Helping others will help to take the focus off of you and put it on someone else. Make a meal for someone, volunteer at your church or school, give of yourself to someone in need.

Take care of yourself
This is a must! Talk with other parents, do something you enjoy, find someone to vent to, take breaks, spend time with your spouse. It is important to renew, refresh, and recharge your batteries so that you have the strength to carry on.

Be thankful!
Be thankful for your life and what you have. There will even come a time where you will be thankful for the illness or disability, what you have learned from it and how strong you really are. Show appreciation to others. They may have helped you through prayer, encouragement, gifts, or their time but thank them for how they have helped and supported you.

Penny Hanlon
www.cominghomeguide.com

Are you packed yet?

Sometimes, your doctor's appointments can turn into a prolonged day of unexpected waiting, more tests, or even hospitalization.

You have worked your schedule out to be gone for a typical doctor's appointment; you get your other children off to school, your spouse is off to work, and you have changed your work schedule for the morning so that you can take your child to their appointment. You get to the doctor's office only to find out that they are running way behind. After waiting, you see the doctor and find out that your child will need some additional tests to be done, more lab work, and another appointment with another specialist to go over the last test results. A two hour appointment has now turned into a six hour appointment and you have had nothing to eat, drink, or read to occupy your time. All of this waiting can become frustrating and stressful.

There are times where waiting is unavoidable, things happen that are totally out of your control. One way to help you pass the time, and stay calm, is to pack a bag ahead of time to take with you to the appointments. These are items that can easily fit into your child's backpack, or in your bag.

You will always want to bring your Medical Organizer. This will have your child's most current and up-to-date medical information. Also, pack bottled water, reading material, a good book, magazine, or crossword puzzle, a healthy protein snack, and note cards. You can probably think of some other things as well.

Another idea to help pass the time while you wait is to enjoy the extra time with your child. Read a book to them, draw with them, play hang man or tic-tac-toe. By the time you are through with the appointment your child will remember the time you spent with them.

Penny Hanlon
www.cominghomeguide.com

The Caregiver

Are you the primary caregiver? Is your loved one a child, elderly parent, or friend?

Taking care of your loved one's medical needs can be challenging at times. Living with a chronic illness, where your time is not your own, can easily lead to anger, frustration, and exhaustion.

But, also being in the position of caring for a chronically ill, terminally ill or disabled loved one can be one of the most beautiful blessings in your life. The daily task of brushing their hair, helping them get dressed, or helping them to eat creates an open door of trust, respect, and love.

As you take the time to care for their medical needs, no matter how severe, you begin to create a bond of faith, hope,and love. Faith says to them, I believe in you. Hope says to them, don't give up I am here for you. Love to says to them, I love you and I will care for you.

Indeed, the blessing is yours!

Penny
www.cominghomeguide.com

Am I on First?

Do you ever feel like "Who is on third?", "What is on second?", Am I on first?"

Here you are managing your illness. You have taken the time to put together your list of doctors, medications, what to take and when. You have put a schedule together of your upcoming doctor's visits, therapy appointments, etc.

Then all of a sudden life happens. Work gets busy and you go into overtime. Your children's activities increase. You and your spouse have yet to have a typical conversation over "Honey, how was your day?" let alone a kiss good morning or good night. And to top it off your doctor has ordered another medication for you to try, another round of tests for you to take, and another specialist for you to see.

Don't worry, it's ok. You are not alone. You are learning how to create a new normal. Instead of a life without "medical stuff" you now have a life that includes doctors, therapists, specialists, and medications on a daily basis. You have a new surrounding of doctor's offices, hospitals, medical staff that become a part of your daily routine.

It takes a little getting used to but you soon realize the importance of communication between you and your doctors, and organizing and managing the illness.

Penny
http://www.cominghomeguide.com/

Who is your Doctor?

One of the key steps in managing your medical needs involves your doctor. Who is your doctor? Do they care about you? Do they listen to you? It is important to surround yourself with a good team of doctors and medical staff that care about you and your family.

You may have one doctor or you may have a team of doctors, therapists, nurses, and caseoworkers. It is vital that you feel comfortable with them to be able to voice your concerns, and communicate your needs. Your comfort level, with them, creates a firm foundation that will help you trust your doctor and the care they are giving you.

Here are some questions for you to ask yourself the next time you see the doctor:

Does your doctor listen to you?
Do you listen to your doctor?
Does your doctor have compassion and understanding?
Are they knowledgeable in their area of expertise?
Do you have a good relationship with your doctor?
Do you trust your doctor?

Creating a relationship of trust and honesty with your doctor opens the door for you to feel confident not only in the care you receive from them but also the care you give to your family.

Penny
www.cominghomeguide.com

Where are you?

Where are you at in managing your health care needs? Are you the one with the illness? Are you a parent or caregiver managing your child's chronic illness or disability? Maybe you are taking care of your elderly parents or grandparents and you need to help them organize their health care needs.

Where do you start? It can be very overwhelming when you start to manage the health of your family. Especially, if you are managing a chronic illness, or disability. Your days may consist of medications, therapy schedules, doctor's appointments, ordering medical supplies, medical tests, lab work, the list goes on. And this is just for one person in your family. We are not even talking about managing your household, your work, or your marriage. It can certainly feel neverending.

I remember when we entered the "medical maze" when our daughter was diagnosed with a chronic illness and severe disability. Our world was turned upside down. The constant medical care that she needed was emotionally, physically and mentally exhausting. I felt I had no control over anything.

I began to stop focusing on the illness and I started to become more involved in our daughter's care. I became a proactive parent instead of always feeling like I was on the defense. I began to organize my time in scheduling her various medical appointments. I made a list of her medications, the strength, the dosage, the form it came in, how often she received it, the doctor who prescribed it, and the date when she started and stopped it. I did this with every area of her medical needs.

I realized that once I had things written down and organized the stress was gone. I was ready, I was prepared, and I felt confident that I was doing the best job I could to take care of her. The peace of mind that comes when YOU are managing you or your loved one's health care needs is priceless!



Penny
www.cominghomeguide.com

Welcome!

So you are home...now what? What can you do to empower yourself, educate, and train you and your family to manage your healthcare needs on a daily basis?

Whether you are home recoverying from a hospital stay or you have a loved one that will need constant 24 hour care one of the first things to do to begin to manage their medical needs is to "Get Organized"! Organizing all of the medical information helps to prepare you and your family for the medical changes that will take place within your home and in your life.

Do not get overwhelmed by the illnes, disability, or how many doctors, therapists or medications you have to write down. Take one step at a time, and begin today managing you or your loved one's health!

Penny
www.cominghomeguide.com

Coming Home attends UMDF Conference 2009

Coming Home participated as a vendor and attended the United Mitochondrial Disease Foundation (www.umdf.org) 2009 Family Symposium. This was a great opportunity to network and share with families the importance of "organizing, planning, and managing" your health care needs.

Coming Home Event with Inspiring Abilities Expo

Coming Home participated as a vendor in the Inspiring Abilities Expo on March 7, 2009.

Coming Home completed pilot program with Hendricks Regional Health

Coming Home completed the pilot program with Hendricks Regional Health in March 2009. The Coming Home Medical Organizer was given to patients at the time of discharge. The organizer allowed them to utilize the provided forms (and accompanied CD templates) necessary to maintain all of their medical information. The program was a huge success!
Click here to read the entire Pilot Program Summary