Managing: Rest of a Caregiver

I was reading an email from our son’s swim coach. Both of our boys are swimmers. Our oldest was on the high school swim team for four years. Our youngest is on the club swim team. All of our kids love the water and are like fish in the water; even our special needs daughter would get such joy and delight when she was in the shower or in the pool. I think they get it from Mike; he is a swim coach and was on the swim team in his high school and college days.

The article was “Three Reasons to Give Swimmers a Rest” by Dr. David Geier. The article talked about the importance of rest for an athlete.  Because of the physical demands of daily training a swimmer’s body cannot withstand the same physical stresses day after day without rest. Daily practice can also take a toll emotionally. The emotional exhaustion can lead to burnout and thus quitting the sport. The doctor prescribed rest.

Boy, I can so relate to this in regards to care giving! Being a caregiver is emotionally, physically, and mentally exhausting. It is important to take care of yourself while in the midst of the day to day care. These demands can and will bring burnout unless you take time for yourself.

Give yourself the rest you need so that you will be healthy enough to care for your loved one. Remember your health directly affects your emotional, mental, spiritual, and physical well-being.

Why is being a caregiver so demanding? I think it is because you are in essence sustaining a life for multiple people not just yourself. It is enough to plan your day, get yourself ready, eat healthy meals, and get yourself where you need to go.

Now, you are required to do that for your loved one as well. Before, it may have taken you 20 minutes or 1 hour to get yourself ready in the morning. Tack on getting your loved one ready, bathed, dressed, bathroom needs, brushing teeth, combing hair, medications, medical treatments, etc. Your morning routine has extended to 2 hours or more in just getting ready. Now, add this to a daily task. Every day this is on your to-do list and we have only gotten through the morning part of the day.

The life of a caregiver is not a sprint. It is not a race to see who can get done the fastest, who can get through the most doctors’ appointments in a week, or who can draw up the most medications in a day. There is no competition between who can do the most therapies in an hour or who has the most specialists on their care team.

Care giving is a marathon. An endurance test that overtime will develop and mature you in your season of care-giving. You will become better prepared to handle the time commitment that is required for your loved one.  It is a time where patience, prudence, and inner peace are always in the fore front of your mind.

Patience – the enduring resolve that is needed while you are waiting to see the doctor or waiting for test results.

Prudence – the cautious foresight needed to make decisions; the best decision for your loved one and your family.

Peace - the inner peace, that stirring of your soul that says breathe, you got this, you can do this, and it will be ok.

From one seasoned traveler to another… give yourself time to rest. Allow yourself time to step back and breathe in the intricacies, simplicities, and delicacies of life. Life is more than the chronic illness, terminal disease, or disability. Life can still be enjoyed and fulfilled. 

Planning: Your Health and Fitness

One of the most important callings that can get pushed to the wayside is the health and fitness of the caregiver. The physical side in caring for your loved one requires strength and stamina. The constant pushing, pulling, lifting, and moving that is required make the physical health of the caregiver that much more important and vital to becoming the best caregiver for your child, aging parent, or spouse.

As you plan out your weekly calendar it is a "calling of the important" to take time for you and schedule "ON PURPOSE!” Pencil yourself in for exercise, a work-out at the gym, a walk in the park, or even some simple exercises in your own home. Do not push your health to the bottom of the list thinking you will get to it tomorrow.

Have you heard the phrase, “ain’t nobody got time for that?” When you are moving and grooving, getting your to-do list done and knocking things off with a check mark it is hard to change gears and put ourselves in the mix.

For me, my schedule would involve getting Gabrielle ready and off to doctor’s appointments, therapy sessions, going to school and having home based school once or twice a week. I would have the appointments to run the medical tests and then appointments to follow up with the doctor on what those test results were and what that meant for Gabrielle. Time spent on the phone for ordering medical supplies, medications, insurance issues. You get the point. This was time just for one child not to mention our other 3 children, my husband, and myself.

I know this all sounds counter intuitive to caring for your loved one who is really sick. Your loved one cannot do anything for themselves and I am talking about you needing to take time for yourself. This is emotional guilt at its finest.

For me, our daughter was completely bed ridden and totally dependent on 24 hour care. She had a beautiful smile that would light up a room and an infectious laugh and that was about it. But, when I would take her on a walk or we would go to the park as a family, or take her to the pool you could see the joy on her face. I would feel a sense of normalcy and at the same time feel really good that we got out for some exercise and we were together as a family.

The reason why your personal health and fitness is so important to being the best caregiver for your loved one is because it helps to decrease the stress. In the marathon race of a caregiver stress and the neglect of yourself will suck you dry. It can drain the energy right out of you.

Each step you take to become the best caregiver you will feel less stressed, more energized in life, and more confident in yourself. These are the steps that will bring joy to your life.

Remember, keep yourself in the mix. As you work at making time for yourself and your health you also take a step towards taking back some of the control that chronic illness and disability can take away. Plan on purpose!

Organizing : The PHR (Personal Health Record)

One of the simple steps to take to become a better caregiver is in organizing the personal health information of your child, spouse, or elderly parent. This is such a simple step and yet it is so easy to forget. Here are some of the reasons that can trip us up:

• You may feel like you can remember all of the medical information
• You may feel like you do not have time to write things down because there is too much information and it is all a bit overwhelming
• You rely on the doctor’s office to give you copies of what you need when you need it.

Now, while these are all valid points, everything changes when you enter the world of chronic illness and disability. You will find a natural tendency to always be on autopilot, caring for the emergencies of the urgent instead of the callings of the important.

What do I mean by this?  For me, caring for Gabrielle felt like I was always urgently addressing her emergencies.  She would get another infection and I would need to go through the steps to get the script, order from the pharmacy, give it to her 4’xs a day, which would require putting it into the mix of her other medication schedule, keep an eye on her for any reactions, follow up with doctor if the medicine worked or retake blood tests to see if the infection had cleared up and then start the process all over again.

For those with chronic illness, infection is never a good thing.  Their body can decline quickly.

I would be urgently dealing with wheelchair issues or the medical equipment in her bedroom that glitches up like her feeding pump that fed her through the night.  These “urgent” issues are stressful situations that directly affect the entire family.  If her wheelchair breaks we cannot go anywhere. If her feeding pump stops working in the middle of the night then one of us is staying up through the night to feed her.

Over time, it begins to feel like everything is an “urgent emergency” and needs to be addressed immediately.  This type of constant stressful thinking is never good for anyone especially a caregiver.  Living in a constant state of flux can cause you to forget about what is important.

Organizing the personal health information for those with chronic illness and disability is a “calling of the important”!  Take the time to sit down and begin to organize all of the medical, disease specific, health information for your loved one.  Take the time to list out the medications, the doctors, nurses, and various medical staff that you work with, or what a typical day looks like in caring for them.

When I first started to get things out of my head and down on paper it felt awkward.  I was so used to mentally caring for her.  By putting things down on paper it caused me to slow down.  My head was not running through my mental check list.  I was beginning to take the first step in really being present and a part of her care.  It really did make a difference. I honestly felt a little bit of the load lift.

I did not fill out all of the forms at once or even in one day.  It took some time.  But, each step I took towards getting a handle on her disease, what it meant, and how I was to care for her brought me one step closer to the peace I was searching for and the confidence in myself to actually care for her.  And that brought me one step closer to her; pushing through the layers of illness and disability and seeing Gabrielle in a new light.

I encourage you to take the next step in writing down all of the critical health information.  To purchase one of our Coming Home Medical Organizer products, click on one of the links below:

• Downloadable Version
• CD Version
• Binder Version

Loving: The Caregiver

You can enjoy your life as a caregiver!
It will require a strong commitment, a positive attitude, and a compassionate heart.  Over time you will find a certain rhythm to the seasons of change, stability, and grief.  While scary at first, this rhythm, a balancing act of sorts, will open the door to confidence, hope, security, and peace of mind; and all the while you are learning to become their best advocate and their best caregiver.

I have found, over the 15 years of being a caregiver to our daughter, Gabrielle, learning to love her involved so many layers. When we brought her home from the hospital we did not have a tutorial on how to be a “caregiver”. There was no caregiver class 101 for us to take. Transitioning from our role as parents and my own role as her mama, to now physically, emotionally and medically caring for her 24/7, required a whole new mindset. My love for her was always there; just as warm, intense, and wonderfully amazing as it was for our other children. But, with her there were so many layers between us that I had to learn how to bridge the gap.

Layers of Loving
Layer of her illness and disability
There was learning to look past her illness and disability and see her in a new light. I had to look past her inabilities, not being able to walk, talk, or care for herself and see that she still was my beautiful daughter.

Layer of the daily grind
There is something to be said about learning to love the daily grind of physically caring for your loved one 24/7. It takes a strong commitment to get up each day and medically care for them; from the daily tasks of bathing, dressing, and feeding to the weekly tasks of working with them on therapy exercises or teaching them a new way to communicate.

Layer of the Logistics
There was learning to love the process of organizing, planning, and managing our daughter’s health and wellness and all of the logistics that came with it.

Layer of the Caregiver
There was learning how to love myself in this new role as her caregiver. In some respects it is an easy job to do. In other respects it is the hardest thing to get over.

As a caregiver it is easy to be hard on yourself.  You have feelings of guilt, shame, fear, and anxiety. It is easy to feel stuck in the unknown of the why’s, how’s, and when’s of it all.

Why did this happen?
How did this happen?
When will it end?

Remember, the love of a caregiver is the gentle reflection of the love in your heart.

For the mama who loves her child who cannot understand, who may have multiple disabilities and medical diagnosis’, who may never see their child reach their first birthday. The compassion, care, and sacrifice that it takes to love those afflicted with chronic illness, terminal disease, and disability is a good thing.

The journey will be long and challenging but it does not have to be full of guilt, shame, and pain. Remember to nurture your space just as much as you nurture theirs. Love yourself just as much as you love them.

As you realize the importance of loving yourself you will find ease in making time for yourself. As you do you find that a healthy you, a healthy caregiver will turn into a healthy loved one. The two go hand in hand.

Nurturing Your Faith

Being part of a community of faith is a critical aspect of your daily health. You need to be connected to a church family that can be there to help support, encourage, and care for you along the way.
Now you may think, "what does my faith life have to do with an illness?". It has everything to do with it! It has been shown that people with a positive outlook and good attitude about life are stronger mentally and physically which helps them with their daily health challenges. They choose to look at the glass as half full instead of half empty. In so doing, they cultivate seeds of faith into a life of beauty.  Here are some ways to nurture your faith.

Seeds of strength and courage

There is something to be said about being calm in the midst of a storm. Dealing with a chronic health issue can exhaust you in every way. Having strength and courage to walk through the fire will bring about an inner peace that is soothing to the soul.

Sow the Word

Reading and mediating on God's word will strengthen your faith during the ups and downs of the emotional roller coaster.

Start to change

As you develop your faith your perspective on life will start to change. The little things in life that used to cause you to worry won't be as important anymore. Choosing to see the glass as half full will begin to ease the fear and anxiety you have of the unknown.

Surround yourself

Surrounding yourself with a church family helps to create a circle of care for you and your family. Your church family will be there to help you along the way.

Serve others

Nurturing your faith in the church gives you an opportunity to help serve and minister to others. Helping others is good medicine for the mind, body, and soul! It is an opportunity to give back, reach out, or share your story with others. And with this opportunity brings blessings!

As you cultivate and care for these seeds of faith they will help to bring restoration and healing in you and through you.

For some great insights, support, and encouragement go to www.InclusionFusion.org. Coming Home is honored to be invited as one of their guest speakers. During the week of November 12-16 they will be hosting a FREE web summit. There will be a wealth of information that will help to nourish your mind and strengthen your community of faith!


Penny Hanlon
www.cominghomeguide.com

Things to keep in mind

It all begins with understanding and managing the information you already have.

Here are some key points to remember:

One step at a time
"Don't try to eat the whole elephant at once". It may take you some time to put together all of your medical information. Here are some forms that you will want to focus on and fill out first.
          Current Status
          Medications List
          Physicians

Baseline only
Do not carry a "filing cabinet". The forms are set up to be one page. Write down the most current information.This will make it easier for your doctor to read.

Set-up at home
Organize a real filing cabinet at home. As you add and change things along the way managing your health will require you to store your medical information in your home.

Using the Coming Home Medical Organizer will help to equip and empower you as a parent or caregiver in taking care of your loved one.

Penny Hanlon
www.cominghomeguide.com

History of Coming Home

We Were Unprepared
When we left the hospital we were not prepared to deal with the challenges of life at home. In our eagerness to get home we failed to realize how unprepared we were in caring for our daughter; especially her medical needs.

Then We Treaded Water
Once we got our heads above water, we realized it was time to tread. Treading was exhausting. She had multiple doctor visits, medications and changes to them, complex diagnosis' and the extensive information that goes with learning about them, and her vital statistics that appeared to be in constant flux. We needed to remember all of this information  at the drop of a hat. As time went on there was too much to keep track of; we could not go on this way forever.

We Started Organizing
Over time we noticed that we were answering lots of questions. Most of them were the same ones, day after day, week after week. What was her date of birth? What medications was she on? Did she have any allergies? Has she had any tests done if so when was the date and time? Who is her doctor? Almost like clock work, each doctor visit, every nurse phone call, medical and insurance forms, government agencies and organizations all requested the same information.

The Stress Was Decreasing
As we collected and organized our daughter's health information we noticed that we were not as stressed. We could now listen during doctor visits. Our organizer gave us a starting point to manage our daughter's health; while giving us peace of mind knowing that we had things under control.

Now We Collaborate
Instead of just listening we found that we were becoming more proactive in our daughter's care. We felt empowered to make more informed decisions and to work together as a partner with our daughter's medical team. Over time the Medical Organizer became our most important tool; making us confident, competent and secure in managing her care.

Penny Hanlon
www.cominghomeguide.com

Peace in the midst of chaos

Caring for your loved ones who have challenging medical concerns, yearly medical forms, and out of the ordinary doctor visits can oftentimes consume your entire day and/or week in some cases.

Recently, all of our 4 children had some medical issue going on at the same time. Each child was seeing a doctor, specialist, had a trip to the urgent care center, or needed to be on antibiotics. One child needed a sports physical, one had an infection and needed multiple antibiotics, one had multiple health issues that needed focused time and attention to, and one had a follow up appointment with a specialist and needed a copy of their current medical health record for another doctor visit.

Now in the past things like this would have tended to stress me out. I would have been searching for all of the correct doctor information, current health records, calling doctor’s offices to get copies of their health records, trying to remember the last time they saw a doctor, if they had any allergies, etc. It would have been very stressful, causing anxiety and worry. Usually I would try to do this at the last minute rushing to fill out all of the paperwork while I sat in the doctor’s office waiting to be seen. Each child needed my time and attention, needed me to be able to make important health decisions on their behalf, and I needed to be mentally present in talking with the doctor and understanding all that was being said.

At times it can be challenging to remember these things for my own health let alone anyone else; but I can tell you it was a different experience this time around. Because of my Coming Home Medical Organizer here are some steps that we took to help bring about peace of mind.

Because of our medical organizer we had the doctor’s information at our fingertips. I had a folder with our children’s medical health information; it was current and up to date. At the different doctor visits we just needed to hand the paperwork to the medical staff for them to make a copy of.

This allowed for my husband and me to tag team with the kids much more easily. He was able to take a couple of kids to their appointments and he had all of their information. I was not the only one in the family to have all of the information regarding our children’s health. It helped to work together and share the experience and the load.

With our special needs daughter we were able to have a timeline in place that charted the various changes in her care. This was helpful information for the doctor as we worked together to make decisions with her medications, follow up tests, and return doctor’s appointments.

Life happens. But when life happens with medical concerns stress and anxiety do not need to be a driving force throughout the process. With a little bit of time in putting together your Coming Home Medical Organizer you can have peace in the midst of your chaos.

Penny Hanlon
www.cominghomeguide.com

There is no place like home

Caring for your loved one in your own home can be a healing comfort for them. It may be medical care for a short term, long term, or a life changing illness. When you bring somebody into your home to help you care for your loved one there are qualities to look for that will help bring about a positive healthy relationship. Depending on how much time they will be in the home will dictate how quickly the bond of honesty and trust will occur. As you begin to have help in the home building on these qualities will help to create a positive healthy environment for you, your loved one, and those on your care team.

Here are 4 important qualities:

Honesty - Honesty helps to build a strong foundation between the patient, caregiver and the care team.
Sometimes there are multiple levels of care for the patient in the home. The more care involved the more critical it is to establish a relationship of honesty. The role of honesty opens the door and paves the way for trust, respect, and communication to begin.

Trust - Being able to trust those who come into your home is critical. Your home environment is a sacred place, your sanctuary. This is where you nurture and grow love, morals, values, discipline, character, integrity, respect, beauty, and grace. This is where the well spring of your life ebbs and flows. It is important that you build trust with those who help you care for your loved one.

Respect - The next step is respect. You must be able to respect each other as a person, each other’s job experience, and the expertise that each of you brings to the table. The value of respect will naturally bring about a sense of dignity and compassion both for the patient, caregiver, and those whohelp.

Communication - Communication helps to develop the relationship between the patient, caregiver and the care team. You need to be able to effectively communicate with those in your home. This could be a parent, siblings, extended family, friends, or those in the medical field. Good communication will help keep the stress level down during the day to day operations of caring for your loved one.

As you work to establish these foundations they will spill over into other areas; your marriage, children, work, activities, and life in general. All of this will help you to better organize, plan, and manage while loving.

Penny Hanlon
www.cominghomeguide.com

Steps to take to be the best advocate for your loved one

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/

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/

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.

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.

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.

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