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