It can be frustrating when you communicate with the medical staff your concerns regarding your loved one and for whatever reason they do not take the necessary steps to help you find out what is going on. For example, your loved one is experiencing "unusual symptoms" and you are trying to find out what is the cause. It could be unexplained pain, muscle aches, extremely loose stools, or a myriad of other things. You talk with the specialist to find out what to do and they may listen but the issue is still not resolved. There is no plan of care in place and you are left feeling frustrated.
Here are some steps to take to help you get the answers you need -
Stay calm - It is hard to talk with someone who is visibly angry and upset. Typically, it is also difficult to make decisions in the best interest of your loved one when you are focused on the anger, anxiety, and frustrations of the moment. If you find yourself ready to explode take a moment to step back, take a deep breath, and gather your thoughts.
Keep a time line of what your concern is - When did the problem start, how long has it been going on, who you have talked with, and options that you have already tried. When you are talking with the doctor about these things give them the highlights of what has been going on since your last visit. Give them a copy of the time line that you have put together for them to put in their files. If possible try to keep this to one page.
Bring someone with you - It is always good to bring someone with you to your doctor's appointment who can help you advocate your concerns. You can bring a spouse, family relative, friend, or even the home health nurse with you who can share their perspective and concerns regarding the problems.
Talk with another doctor - If you are taking care of a loved one who has critical care needs, multiple doctors to follow, and/or you are an inpatient or outpatient regular at the hospital then talk with one of your doctors who you have a good relationship with. Ask them for advice, guidance, and direction on what you should do.
Hospital patient advocate - Sometimes the hospital will have a patient advocate on staff that you can turn to and talk with regarding your concerns. They can then step in and advocate on your behalf.
Do not be afraid to speak up if you have concerns. Things can be missed or overlooked by the doctor, nurses, or medical staff. If things remain unresolved then you have the right to find another doctor who will address your concerns and help you come up with a plan of care that is best for you and your loved one.
Penny Hanlon
http://www.cominghomeguide.com/
Thursday, December 1, 2011
Wednesday, September 28, 2011
Decisions, Decisions, Decisions
When your loved one has chronic medical needs, you are constantly making decisions on their behalf on a daily basis. You need to decide what doctor to see, which medicine to take, when to have surgery, what type of medical equipment do you need at home, etc. The more medical needs you have the more decisions you need to make.
So, how do you make the right decision, and how do you feel comfortable with the decision you have made?
First of all, don't be afraid to make a decision. Decisions that involve the health of your loved one can be paralyzing. You may or may not have the luxury of time to carefully consider all of your options and their possible outcomes. Trust that you are doing the best you can with the information that you have available.
Research and gather all of the information that you can to make an informed decision. Whether you are looking at needing a wheelchair, ordering medical equipment and supplies to use in your home, trying an experimental treatment, or just finding resources specific to your medical needs take the time to gather information and see what options are available to you.
Communicate with the medical staff involved in your care. You may have one doctor or multiple specialists, nurses, therapists, and case managers involved in your plan of care. Talk with them; find out what steps you need to take to make the necessary decisions in the day to day care. This will help in building a solid foundation of trust.
Talk to your spouse, close family and friends, and your clergy. Oftentimes they can offer clarity and insight on an issue that you may be dealing with. Sometimes a fresh perspective is all you need when making those tough choices.
Penny Hanlon
http://www.cominghomeguide.com/
So, how do you make the right decision, and how do you feel comfortable with the decision you have made?
First of all, don't be afraid to make a decision. Decisions that involve the health of your loved one can be paralyzing. You may or may not have the luxury of time to carefully consider all of your options and their possible outcomes. Trust that you are doing the best you can with the information that you have available.
Research and gather all of the information that you can to make an informed decision. Whether you are looking at needing a wheelchair, ordering medical equipment and supplies to use in your home, trying an experimental treatment, or just finding resources specific to your medical needs take the time to gather information and see what options are available to you.
Communicate with the medical staff involved in your care. You may have one doctor or multiple specialists, nurses, therapists, and case managers involved in your plan of care. Talk with them; find out what steps you need to take to make the necessary decisions in the day to day care. This will help in building a solid foundation of trust.
Talk to your spouse, close family and friends, and your clergy. Oftentimes they can offer clarity and insight on an issue that you may be dealing with. Sometimes a fresh perspective is all you need when making those tough choices.
Penny Hanlon
http://www.cominghomeguide.com/
Saturday, April 24, 2010
Coming Home Event with Speedway Resource Fair
Coming Home participated as a vendor with the Speedway Resource Fair. This was a great opportunity to meet and share with families the importance of "organizing, planning, and managing" their families health care needs.
Saturday, March 13, 2010
Coming Home Event with Inspiring Abilities Expo
Coming Home participated as a vendor at FUSE's (www.fuseinc.org) Inspiring Abilities Expo on March 13, 2010.
* FUSE stands for Families United for Support and Encouragement.
* FUSE stands for Families United for Support and Encouragement.
Sunday, January 31, 2010
Renew, Refresh, Revive!
How do you find the balance between living life and living life with an illness or disability?
The difference between living life and living life with an illness or disability is living in the moment not waiting for the moment. Instead of waiting for things to fall into place, waiting for a cure, waiting for the next doctor appointment, waiting for the next test result, waiting for your child to learn the next step learn to enjoy your life now. Do not let the illness or disability be an excuse for you.
Here are some things to consider:
Renew -
Renew your commitment to your faith, your family, your finances, and your fitness. Too many times we look for excuses to not work out, to not spend time with your spouse, to not budget your finances each month, or to not stay grounded in your faith. Renew your commitment to yourself to stay committed to your life each day.
Refresh -
Refresh your mind and attitude with a positive, "I can do this" mentality. Your needs may be great or few. Your needs may be medical or behavioral. Whatever the case, refresh your mind with a positive attitude.
Revive -
Revive your goals and dreams of what you want to do, what you want to accomplish, where you want to be in spite of the disability or illness. Do not focus on what you cannot do but focus on what you can do. The challenge is to pursue life and live it.
The difference between living life and living life with an illness or disability is living in the moment not waiting for the moment. Instead of waiting for things to fall into place, waiting for a cure, waiting for the next doctor appointment, waiting for the next test result, waiting for your child to learn the next step learn to enjoy your life now. Do not let the illness or disability be an excuse for you.
Here are some things to consider:
Renew -
Renew your commitment to your faith, your family, your finances, and your fitness. Too many times we look for excuses to not work out, to not spend time with your spouse, to not budget your finances each month, or to not stay grounded in your faith. Renew your commitment to yourself to stay committed to your life each day.
Refresh -
Refresh your mind and attitude with a positive, "I can do this" mentality. Your needs may be great or few. Your needs may be medical or behavioral. Whatever the case, refresh your mind with a positive attitude.
Revive -
Revive your goals and dreams of what you want to do, what you want to accomplish, where you want to be in spite of the disability or illness. Do not focus on what you cannot do but focus on what you can do. The challenge is to pursue life and live it.
Thursday, December 10, 2009
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
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
Wednesday, November 4, 2009
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
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
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