Being a caregiver has been a life changing experience and a fulfilling one in so many ways. It strengthened the bond between my father and me. It opened my eyes to the confusing and antiquated world of long term care. It gave me an understanding of how difficult it is to watch someone you love deteriorate before your eyes.

Since my father’s death, I have gone from caring for him to being the father of a beautiful, healthy 19-month-old daughter, Avery. Being a father made me realize how many sacrifices my parents made for me when I was growing up. I am so grateful I was able to help my father enrich his life during his last years and like to think I repaid him for a few of the sacrifices he made for me.

After my experience as a caregiver was over, I was determined to help others by sharing the lessons I learned and bringing long term care into the 21st century. I have worked in healthcare for almost 25 years but was shocked at how difficult it was to navigate the world of long-term care.

It was difficult to find qualified and compatible home healthcare aides for my father. There was no information about the quality of services or reviews from customers about their experiences. We went through numerous aides as we struggled to find the right one for my father.

One of the most frustrating parts about being a caregiver was keeping track of my father’s appointments, especially as his Parkinson’s progressed. He had home care visits, doctor’s appointments and medication dosages every 3-4 hours. There was no centralized place to track all this information.

Obtaining specialty medical supplies like bathroom bars, bed liners and walkers was difficult. Many of these items were not available at the local pharmacy and had to be order via catalogs or the Internet.

I created eCare Diary to make life easier for caregivers. It was developed out of my personal experiences and has grown through the input of other caregivers. eCare Diary is the first centralized website that offers free tools, information and community to address many of the issues I faced. These include an appointment and medication management tool, a search engine of care facilities, a shopping portal and supportive blog communities for caregivers.

One of the major goals of eCare Diary is to be an interactive community where the needs and suggestions of caregivers can be integrated into the site. We have been so gratified by the feedback and suggestions we are getting from visitors. We plan to release eCare Diary 2.0 shortly and this will include a number of additions recommended by users.

Starting a new business has been exciting and scary. I worked for a startup during the dot-com boom but I have spent most of my life working in large organizations. eCare Diary does not currently have investment money so we are operating on a tight budget. It is difficult and takes a lot of hard work, but it has also forced us to be creative. We have found social media to be an excellent way to connect with caregivers and to publicize what we are doing. It was through Facebook that we connected with Denise Brown and learned of the terrific work she is doing here at Caregiving.com.

The most rewarding part of the launch has been the new people we are meeting. Since launching the site in September we have connected with many caregivers locally and online. We have found that many of them have the same thirst for information and feeling of isolation that I had. They are fortunate that there are resources available today that did not exist when I was caring for my father.

Related articles

• Part 1: How I Felt When I Heard my Father’s Diagnosis
• Part 2: Three Toughest Challenges I Faced As A Caregiver

Ken Mills and his children on his 80th birthday.

(Editor’s Note: This is the second of a three-part series written by John Mills, who we call a Godspeed Caregiver. In this series, John Mills discusses caring for his father and his decision after his role ended to launch a business, eCare Diary, to help family caregivers.)

Becoming a caregiver is an unplanned experience since we never know when or where it will occur.  It creates many challenges in terms of day to day care and the emotional needs of the patient and caregiver.  When I was caring for my father, Ken, who suffered from Parkinson’s disease, I faced many challenges and will discuss the three toughest ones.

Allowing My Father to Be Independent While Convincing Him He Needed Help

Parkinson’s is a degenerative disease so when my father was initially diagnosed the medications addressed many of the symptoms permitting him to live independently.  However, as the disease started to take its toll on his body and the medications were less effective, it became harder and harder for him to live without help.  He started to fall, had trouble making meals for himself, dressing himself and bathing himself.

My father’s way of coping with the disease was to deny that Parkinson’s prevented him from doing the things he wanted.  Since he was in denial, the toughest part was getting him to face the fact that he needed home care.

In most cases, the decision to seek long term care is a multi-step process that requires working with the patient and convincing them they need help.  This includes evaluating their ability to perform activities of daily living, talking with them about the issues they are having and finally coming to a consensus about taking action or, in the worst case, making the decision for them.

My father was very reluctant to accept any help because he saw it as an infringement on his independence.  We had many “heated” discussions about it.  He had an active life which he wanted to continue.

He began to realize it was not possible to do all these things without help and he reluctantly gave in to getting home care.  This worked out well because it allowed him to live the life he desired.

The Demands of Being a Caregiver

Throughout my experience as a caregiver I had a full-time job and was also married but did not have children.  While getting my father home care made his life easier and lessened the burden on me, I was surprised at how demanding being a caregiver was.

On top of the usual care demands, my father wanted to continue traveling, attending sporting events and participating in community activities.  As a caregiver, you know that the time with your loved one is short so you try to help them whenever possible.

Trying to juggle my father’s demands with everything else was extremely stressful.  I did my best to accommodate him and he, for the most part, was happy.  I, on the other hand, was constantly tired and stressed.

I began to suffer caregiver burnout.  I needed a break and someone to talk to about the issues of being a caregiver.  At my wife’s suggestion, I began to get counseling.

While I did not need major psychological help, I needed an impartial person with whom I could discuss this very stressful situation.  The advantage of talking with a counselor instead of a family member is that they are not emotionally involved and did not feel pressure to help.  My counselor had been through caregiving with his own parents and had many useful insights he shared.

It was one of the best decisions I made because it helped me cope with this difficult situation.  I realize that not everyone is open to counseling or has insurance that will cover it.  However, talking with someone who has an impartial view is very helpful.

The Rapid Decline in the Last Year

Facing the fact that a loved one is nearing the end of their life is difficult.  In my case I was in denial because you never want to say goodbye.  Nonetheless, I found my father’s rapid decline in the last 9 months of his life surprising and extremely challenging.

My father’s experience with Parkinson’s had been slight declines in health followed by long plateaus where little changed.  Towards the end he was on a straight downward slope.

A month before he passed away, I thought he had about six months to a year to live but I was wrong.  He had a massive stroke while on his annual vacation at the beach. It was a complete shock because we had been prepared for his death to come from Parkinson’s not something else.

Fortunately my father had planned for end of life with a living will, a healthcare proxy and power of attorney.  He had made it clear that he did not want to live if he had major loss of brain functions with no hope of recovery.  Based on conversations with the doctors it was clear he had reached this point.

We adhered to his wishes, placed him in hospice where he passed away peacefully surrounded by his family.  It has been 2 years, and I still think about how shockingly quick the end was.  It is still tough to deal with, but I take comfort knowing we adhered to his wishes and that he is at peace.

Related Articles:

• Part 1: How I Felt When I Heard My Father’s Diagnosis with Parkinson’s
• Part 3: The Impact Caregiving Had on Me
• Living Wills and Other Advance Directives: A Primer (blogs.wsj.com)
• Planning Your End-of-Life Care (usnews.com)

(Editor’s Note: This is the first of a three-part series written by John Mills, who we call a Godspeed Caregiver. In this series, John Mills discusses caring for his father and his decision after his role ended to launch a business, eCare Diary, to help family caregivers.)

My father was diagnosed with Parkinson’s disease in early 2001 and passed away from it two years ago at age 83.  His diagnosis was a life changing experience which resulted in returning to my hometown of New York City from the West Coast and eventually becoming his caregiver.

My father, Ken, started to have hand tremors in 1996, an early symptom of Parkinson’s and a number of other conditions.  He was referred to a neurologist who told him he did not have Parkinson’s but prescribed medication to relieve the trembling.  Incorrect diagnoses of this disease are common because there is no test for Parkinson’s.  Doctors are left to make decisions based solely on symptoms.

For most of the late 1990s my father lived a full and productive life with few signs that he was suffering from the disease.  In retrospect, there were signs my father had Parkinson’s long before it was properly diagnosed.  He had always had tons of energy yet he started to feel fatigued.  He began to shuffle as he walked and his posture became stooped.  These are all symptoms of Parkinson’s disease.

In late 2000, my father began to have balance problems due to the Parkinson’s.  Just before a World Series game between the New York Mets and the New York Yankees my father fell off a ladder in his apartment.  He didn’t know it at the time but he had broken a rib and punctured a lung.  A few days later my father was taken to the hospital where a collapsed lung was diagnosed.

This was when we learned that he had Parkinson’s disease.  During the hospitalization the doctors investigated his balance issues that were causing him to fall.  They suspected the disease and referred him to a neurologist who specialized in it.  After a few visits and examinations, the verdict came down that he was suffering from Parkinson’s.

I had a mix of reactions after the diagnosis.  While my father had not experienced major health problems, he was 77 at the time and had not lived a healthy lifestyle.  He had smoked heavily for 60 years and while not an alcoholic, he enjoyed his drinks.  I knew it was inevitable he would come down with some ailment, but I expected it to be either heart or lung related.  Parkinson’s shocked us.

Six months earlier I had made a decision to leave Washington, DC after 13 years and move to Portland, Oregon to join the dot-com revolution. Rather than being just a short plane or train ride from New York City, I was now 10-12 hours away when my family would need me most.

I was not prepared to uproot my new life in Portland, but deep down, I knew there would be a day when I would have to return home to care for my father.  I have two sisters and one lives in the New York City area.  During the time that we learned of his disease, my sisters both had children at home while I was single.  Additionally as the only son, my father and I were extremely close.  So consequently, I would become his caregiver.

In an ironic twist, fate intervened.  The dot-com company I worked for was going through financial difficulties and my old employer approached me about coming back to work for them in a different capacity in their New York office.  It was perfect in many ways.  It provided better job security than I had at the dot-com, and it allowed me to move back to my hometown where I could be close to my father and watch over him.

At the end of 2001, I came back to New York City which turned out to be one of the best decisions of my life.  It allowed me to serve as my father’s caregiver which was a rewarding although difficult experience that I will outline in my next article.  Soon after I moved back, I met my wife, and we now have a beautiful daughter who was born 10 months after my father passed away.

(Would you like to share your caregiving story on Caregiving.com? Send Denise an email with your story idea.)

Related Articles

• Part 2: My Three Toughest Caregiving Challenges
• Part 3: The Impact Caregiving Had on Me
  

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Last week, PsychCentral.com posted a helpful article on depression (7 Myths of Depression). I shared the link to the article on Twitter and immediately received responses. No surprise—depression and caregiving can go hand-in-hand.

I asked one of the family caregivers who responded, Heather Short, to write about her experiences with depression. What follows are my questions and her answers. Heather is 33-years-old and lives with her fiance and her mom, for whom she cares.

Caregiving.com: What was your first experience with depression?
Heather: My mom has had a stroke. She also has several other physical ailments. The one thing we share is depression. In what some might find strange, I believe I began to suffer the symptoms of depression and seek treatment first. My first episodes with depression originated around the time I was 15. I was an only child and never very sociable. I didn’t have a lot of friends and I didn’t spend hours on the phone or at my friends houses on weekends. I was pretty much a loner. I liked to read and do crafty things. From the outside, it seemed only right for people to say I was “depressed.” “She’s always alone.” “She never goes anywhere or does anything. All she does is stay in the house and keep to herself.” Oddly enough, I was quite content and happy. It just goes to show how deceiving looks can be.

Caregiving.com: How has depression affected you personally? How does your caregiving role play into your depression?
Heather: A lot of things have changed since my first being diagnosed with depression. I’ve grown up quite a bit in the last 18 years. While I’m not exactly the life of the party, I no longer hide myself away either.  Even when medicated, I still suffer some of the symptoms I did before being medicated. Being a caregiver, like any other responsible role (husband, wife, mother, father, human being) is tough. You feel the pressure to always be “on.” You have responsibilities to others and you feel guilty when you can’t hold to them. There are some days when I tell mom she can only expect the basics from me. I’ll do the things she needs me to do and all the wants and extras wait for another day. It’s learning to recognize the difference between just being down and what is a depressive episode. That’s the only way for me to know when to push through or when to let it be.

Caregiving.com: What’s the worse part about depression? How does it feel?
Heather: The worst part about depression is the word having become a colloquialism. Now any time someone has a day that gets them down, they’re “depressed.” While not wanting to diminish the needs of others, it is sometimes hard to hear the word bandied about so lightly when you’ve been crippled by it’s effects. I don’t think anyone with the flu would be so bold as to say they felt like they had cancer. The word has becomes so over and misused that it makes it harder for people to feel good about seeking treatment. As for what depression feels like, I can only answer for myself. Far beyond want, most of the time I can’t do anything. There is a complete lack of energy. Most activity has to be forced from me. I don’t want to go to the bathroom, I don’t want to want. Even the thought of most of those acts becomes taxing to me. I turn off all the ringers on the phones and lock out all of the world that I can. My body aches, similar to having the flu. If I start to recognize it coming soon enough, there are some things I can do to lesson the severity. There are, however, certain times when there is nothing I can do and I just have to ride it out.

Caregiving.com: Have you sought medical treatment for depression? What was that like? Have you found a treatment that works for you?
Heather: I have sought treatment for depression. I’ve been in and out of therapy since I was 15. I love therapy. If I could afford or had insurance to cover mental health I would be in therapy at least once a week. Seeking treatment was scary at first. Because of my age when I first sought treatment and what I was seeking treatment for, a lot of people in my life had opinions that weren’t so kind. People are scared. Scared of what seeking treatment might mean for me and for them.

Knowledge is power. There is nothing as important as educating the ones you love that depression, or any other mental health issue, isn’t contagious nor is it shameful. Suffering from depression doesn’t make you “crazy” or “insane” or scary. It makes you human. Don’t be afraid. If you need help, ask for help. Ask for help even if you aren’t sure you need it.  Get help. There is no need to suffer what can be an easily treated and very manageable disease.

Treatment for depression can come in so many ways. People who are scared of medication don’t need to be afraid that that is the only solution. There are many things other than medication that can help tremendously. I am medicated, but I also use other alternative therapies to supplement the medication. The medication I take works to help with depression and anxiety as well as some light OCD issues. I also try to get as much sunshine as possible. My future sister-in-law uses a light box that simulates the nature rays and energy of the sun. I have also recently taken up yoga. It’s amazing how much the simple act of moving your body around can change how you feel. With all that, I still feel the effects of depression. This doesn’t mean it’s not worth it. It just means that sometimes, no matter how much aspirin you take, your head is still going to hurt. This is true with depression, too.

Caregiving.com: What advice/suggestions would you offer to someone who suffers from depression?
Heather: SEEK TREATMENT. Do whatever you have to do to get yourself well. Don’t be afraid of the slings and arrows of others. If you need to, go to lunch with members of your family or friends and tell them what’s going on. Tell them you’ve noticed changes in your well being and you’re going to seek treatment. It might also be helpful to have a pamphlet to give them. It’s amazing how much it can help a friend to know you’re not avoiding them when you don’t answer the phone. Seek out mental health care facilities that provide outpatient single and group therapy. Many facilities offer a sliding fee scale so even if you don’t have insurance you can afford to seek treatment. Seek alternative therapies. Explore yoga or Tai Chi. Join a gym or get together a group of friends who will walk with you every day. Spend time in the sunshine. Be open to medication. Rarely is someone excited to taking a pill for anything. But if it can make you feel better, if it can make your life livable again, isn’t it at least worth considering?  If someone you know and love had any other signs and symptoms of a serious illness, you would urge them to seek all available treatments. Depression is no different and you should do everything you can to treat yourself.

(Heather designs our products for sale in our Caregiving Creations store. Her most-recent design celebrates Kiss a Caregiver Day, which takes place on Tuesday, November 24. Heather also designs products for her own store, The Laboratory 1975. You can follow Heather on Twitter.)

(Editor’s Note: On a regular basis, we invite healthcare professionals and family caregivers to write a guest blog. We asked Patty Kearns, who cared for her mom until her mom’s death last year, to share her thoughts about a concept to share her thoughts about a concept she’s been thinking about lately–the Caregiver Compassion Quotient (CQ) and how it can help us reduce our stress.)

It’s no coincidence that millions of our national family caregivers have been Leading by Compassion as we struggle to rebuild our economy and our world…

First it was I.Q., then it was E.Q. (Emotional Intelligence)…and now,
through our Caregivers, it’s the Compassion Quotient (CQ) that can give us
the confidence to keep moving forward.

What’s the connection between family caregivers and the world financial crisis? The two may be more closely linked than we could have imagined. In order to pull ourselves through this widespread financial crisis we’re in, we know we’ll need to make sacrifices and work together. Sounds like caregiving, which takes a lot of empathy and Compassion.

Sourcing the Power to Do: Out of the age-old story of Love vs. Fear, it’s our Compassion that stirs within us the necessary confidence. With Fear and pessimism, we’re frozen. With Love, we put ourselves forth to the task. Isn’t confidence exactly what is needed in an economic downturn?

Our Compassion leads us through the darkness to meet the day’s needs for our families. Like the woman who hoists up the car to save the baby, it’s CQ–isn’t it–that keeps us from the brink? This same life-saving instinct can bolster the muscle to bail us out. Certainly, we can endure a multitude of endless inconveniences and exhausting restrictions: caregivers are the pros. It’s our Compassion–or the lack of it–that makes or breaks us.

The Compassion Quotient is the spiritual component that offers you an art that can be practiced. In the worst of times, the higher your CQ, the better you feel. It strengthens your spirit! CQ eases caregiver turmoil (mental.) It helps dissolve stress (emotional.) It makes the hapless unending work load seem somehow possible if not lighter (physical.) Compassion beckons us to Be and to Become. For time-starved caregivers who are pushed to the max, a healthy level of CQ takes determination to maintain. Yet, is there a caregiver who wouldn’t benefit?

The Hidden Bailout: Family caregivers are living proof that Compassion can be quantified. Caregivers make up the largest-growing volunteer group in our country. In the face of disaster, America’s volunteer spirit has long been a beacon for our troubled planet. As our population continues to age, all of us will be needing care…or providing it. More than 54+ million caregivers are a prime example of an abiding love. Selflessly–and without pay–behind the scenes they provide ‘round-the-clock care to their loved ones FOR FREE.

According to Eric Joice, Executive Director of The Family Resource Network, this army of advocates is saving taxpayers a stunning $375 BILLION dollars! That’s more than half of our financial bailout package of $700 billion dollars!

Compassion by the Billions: Therein lies massive quantify-able CQ! To preserve the human race, we must take care of each other. Caregivers do that, but they need our immediate support, respite and resources to keep going: the care of the largest aging population in our nation’s history is upon us.

Here’s to Their Health–and Ours: It’s our compassion that defines us. The greed, loopholes, and economic land mines that dash parents’dreams for their children: that’s not the language of CQ. Compassion leans closer to tell us dearer stories–not the horrors in the news that rob us of our sleep. Without kind care and thoughtful good neighboring, life doesn’t work very well, nor is it happy. Right here, right now in our communities we have the power to select wholesome options for our families. What if our self interests were driven by the need for some cost-effective inner peace? The consequences of our impaired immune systems are rampant and cause severe adverse effects. Choosing Compassion–at home, in our supermarkets, on our highways– would soothe our souls, dissolve our stress, and smooth our paths safely toward better physical and financial health.

The Old Model and the New: Economic change will come through two of our national treasures: our old-fashioned ingenuity, and our remarkable blend of cultures and ideas. Raised on Compassion–not home grown hate–we’ll earn the pride of lifting ourselves up and out. Know that each of us–combined–will make the powerful difference as we take action to rebuild, re-think, re-define, reorganize, recycle, re-purpose, refinance, reconstruct, and reinvent our priorities.

But it takes higher energy than mere Change. Transformation is what shifts us from existing views or limits into a whole new realm–the dramatic difference. Infinite and expansive, CQ alters our former perception of what can be.

With Possibility Thinking like CQ, we boldly access something beyond what previously stopped us in our tracks. We gain sudden clear insights that zoom us past our comfort level toward amazing leadership, innovation, and unprecedented abundance. We actually now face Possibilities of measuring our legislation, our work–our thoughts–by their ability to transform.

The Shift to CQ: Within lies the transformational shift toward Compassion that frees us from the terrifying panic of Fear–the great destroyer of wellness and fortunes. Adversity itself walks us straight to the larger picture: like the caregivers, we’ll be moved to our grandest accomplishments by the very need for our love.

Today we have this actual turning point for turnaround. The nations of the world are learning financially how much we need each other. What we really need is the guts to muster all the CQ we can get…strategically-focused, unifying, stress-defying, contagiously-healing, health-cost-reducing, community-action kind of Compassion. CQ instinctively knows that all the wrongs have hurt too many, and that any kind thing done with goodwill can surely offer some ease.

What’s your CQ? For caregivers, growing in Love is the highest lesson, a divine calling. The sacred unconditional protection of another–caregiving–requires an unfathomable endurance that moves us boldly beyond self to the place where everything truly is fine. Caregiving–the opposite of terrorism–is fueled by Compassion, the engine of the great human change agents for feeding the hungry, curing insidious diseases, and keeping our planet and its inhabitants safe. But we hesitate, because CQ calls us to embrace the challenge of our lifetime armed with the intangible.

The glorious swell that turns the tide: Remember, when taking action in a crisis, it’s intelligent (I.Q.) –and a sign of leadership–to have mastery over your emotions (E.Q.) Such composure turns up your power to leap to the something more–the indefinable edge that can make all the difference in the world: (your CQ). Compassion is the signature of enlightened team building, sure to inspire. That’s the most appealing element of your CQ, the way you rescue others from trouble with such devotion.

How can you raise your Compassion Quotient? For caregivers, every hour harbors its challenges. But CQ has the advantage–a healing energy field all its own. Do you want a healthy feeling of Resilience…under any condition? It may simply be a question of how close you are to the quality conclusion about Becoming a Loving Presence. You’re making the connection when your idea about Having More Patience changes into Becoming a Loving Presence. Become a Loving Presence.

When we hold the best interests of all at heart, it stretches us to ever-nobler purpose. With CQ, you can streamline your every effort to create relief from desperation while growing stronger in the balance. And, what a useful tool for coping with the behaviors: who needs anger management when you’re responding with sincere concern!

Become a Loving Presence–and spread little daily pockets of unspeakable calm to your family and world. Then model a forgiving courtesy to any who can’t yet grasp how. CQ is a spiritual paradox perfectly aligned with immutable universal laws. It works one-on-one or en masse. Selfless higher love of one another (CQ) is both the spark that ignites transformation–and the transformation itself.

Try it. Practice merciful CQ everywhere you can–and with great tenderness–as if your wellness and our unaffordable healthcare system depended on it. They do. We have not yet mastered the control of our stress, but we can pull each other along. Therein lies the secret to our health, wealth and happiness. As we’re comforted, our spirits rise, solutions become apparent…and a nation allows itself to heal.

If you need a reminder of the goodness all around, think of the vast numbers of caregivers in our own hometowns who give their lives to provide ‘round-the-clock care while everybody else is sleeping. Leading by Compassion, they co-create a dramatic difference with their incalculable CQ and its remarkable benefits. These days everybody wants good benefits.

Whatever we focus on is what we have. Filled with CQ, we’d always have more to give–a great fix for any downturn. As Humanity evolves, we’ll savor with delight how our confidence and abundance keep growing in proportion to the more we care. Each time we acknowledge a fear and prefer instead the indomitable spirit of immeasurable love, we’ll be choosing the essential indicator of our next true success.

P. M. KEARNS is author of LESSONS IN THE DIVINE FOR CAREGIVERS© and creator of REMOVING NEGATIVE THOUGHTS© programs and CDs for dissolving stress. Find out how you can bring a Spiritual Buffet for The Totally Exhausted to your group or organization with speaker events, book signings, and programs for spirit building and accelerated productivity through a healthier, more peaceful inner life.

Join Patty and Denise for a special discussion about CQ on Your Caregiving Journey on Wednesday, April 29, at 8 p.m. Central. You can listen live here.

By Lori Palermo

(Editor’s Note: On a regular basis, we invite healthcare professionals and family caregivers to write a guest blog. We asked Lori to share how her dad’s death led her to a life of advocacy. Lori’s website is www.loveyourlungsbreatheforlife.com. You also can listen to Lori discuss her experiences on Your Caregiving Journey.)

On December 26, 2003, my dad passed away after a 13-year battle with COPD/Emphysema. Since that time I have become very involved in lung disease work and smokefree living. In June 2006, I launched my own website In Memory of my dad; I am now an Advocate For Lung Disease Awareness & Smokefree Living.

When my dad was diagnosed with COPD in the early 90’s, there was not much information available to the public about COPD, nevertheless being a caregiver. This may sound like we were very naïve, but my family had no idea what COPD was all about. We didn’t know that it was a debilitating disease that got progressively worse. Moreover, I had to surf the internet at work to see what “COPD” meant, Chronic Obstructive Pulmonary Disease. The doctors were of no help in explaining anything about the disease. The only thing they told dad was to quit smoking immediately, which he did. However after 40 years of smoking his lungs were quite damaged and there was no turning back.

Once the doctors put dad on the correct meds, you would never have known that dad had a lung disease. However, as the years went on, I remember noticing slight changes for the worst in dad’s breathing. Dad always wanted to protect my sister and me, so he never actually let us see how bad he really felt, or how bad his breathing was digressing. Only my mom knew how bad dad really was. However she always put on that “happy face” and said he was doing “good.” I believe this was the older generation’s way of dealing with life.

It wasn’t until a few months before dad passed away that a girlfriend of mine mentioned to me about a new research she heard about which involved resveratrol, a polyphenol antioxidant which is found in the skins of red fruits such as grapes.  I searched the internet and found an article linking red wine as a suppressant to this debilitating disease. I decided to let Dad read the article and even though he was not a wine drinker, just maybe he would start drinking a glass of red wine a day with the possibility of slowing down the deterioration of his lungs. Dad did agree to drink a glass of wine a day. This daily glass of wine was going to be A Ray of Hope.

Since I have become involved in lung disease work, I have also learned so much about caregiving, not only for a lung disease patient but for a person with any type of chronic illness. What I feel in my own heart is that if I would have begun researching COPD/Emphysema years earlier, I believe I could have helped my dad live a few more years with certainly a better “quality of life.” You see, my dad and I had a very special bond, and we were very much alike. That is why I believe I could have helped him; that is the one regret in dealing with dad’s death.

So, as I call it, “The Importance of a Caregiver and Patient Relationship:”

Whether you are a family member, friend or professional caregiver there are important facts that should be discussed, written down, and always readily available in case of an emergency or if the family caregiver’s back-up must step in.

1. Learn about the disease; family members and patient through books, internet, support groups.
2. Have family discussions concerning how to care for the patient.
3. The patient should be involved in all discussions.
4. Keep a journal of all discussions and have it readily available.
5. Medications/schedule of meds/pharmacy/what the medication is for should be annotated.
6. Needed equipment and where purchased. (oxygen tanks/tubing, nebulizer, special bedding, exercise equipment/toiletry needs) should also be annotated.
7. List of Doctors/Specialists, phone numbers/addresses, again annotated.
8. Family members should know about household finances/bank accounts/life Insurance & health insurance information/living will.
9. Learn about the patient‘s physical and mental state of mind.
10. Write down questions or concerns for each doctor’s visit and take notes!

Two months before my dad passed away, I printed out page after page of info about COPD/Emphysema. As my family read over it, we were shocked at the outcome. I then decided to go with my dad and mom to his next doctor’s visit. I had a list of questions for the doctor. Most of the questions I asked, the doctor skirted around the answers. The final question came with an answer that as a daughter who thought of her dad as “invincible” and “her hero,” was the last answer I expected to hear. “What stage of COPD/Emphysema is my dad in…?” “The end stage” was the answer.

On December 15th, 2003, Dad was rushed to the hospital with pneumonia. It was like a whirlwind, he was put on a ventilator. I never got to speak to him again. Two weeks later I received that dreaded phone call; Dad’s condition was much worse, we had to make the final decision. At 7:30 am on December 26th, dad passed away peacefully as we took him off the ventilator.

Patients, families, friends, and caregivers… please learn all you can, do all you can about your loved one’s disease. You don’t want to live your life with that one regret: “What if I would have…”