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