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Saturday, November 26, 2016

Caregiving: A Promise We All Make When We Take Our Vows

Recently I attended a wedding where I ran into a friend who I went to nursing school with. My friend is one of the nicest people I know - always happy and vibrant. When I saw her, I went up and gave her a big hug, she did not respond as I expected. I looked at her husband, and he looked at me with a sad face and said 'she is not herself anymore'. He explained she was diagnosed with early Alzheimer's a few years ago. In talking to him, I learned her symptoms started when she began forgetting things and making mistakes at work. He also noticed slip-ups at home. Eventually, he took her to see a doctor as she was not herself. After a series of tests, the diagnosis of Alzheimer's was made.

Over time she has declined significantly and now requires full-time care and help with all of her activities of daily living. Her husband has assumed this role and stopped working to take care of her. She goes to an adult day care center during the day, but the stress of caregiving has been hard on him and his entire family.

During the Mass, I listened to the priest as he led the couple in their wedding vows; “I, take thee, to be my wedded husband/wife, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part, according to God's holy ordinance; and thereto I pledge myself to you." I realized how important those words are, especially when one of the two people become sick, and one assumes the role of the caregiver.  It is a promise we make when we say our vows before family and friends. I don't thin we really ever realize what those words really mean till we are faced with being a caregiver for a loved one. 

After the ceremony as we said our good-byes, I asked my friend if I could call him from time to time. He said he would like that, as so many of their friends have stopped calling or coming around. 

My heart was breaking as I watched them both walk to their car.

I could not stop thinking about them and how their lives have changed due to this terrible disease. I was so proud of my friend's husband for being there for his wife. You could tell by looking at him how much he loves his wife. 

The experience left me sad but with a desire to do something positive to help my friend and others who are caregivers. As I thought about it and what I could do, I recalled how important social media was for me when I was sick. Facebook helped me stay connected when I felt disconnected and lonely. Being able to go online allowed me to gained support from family and friends who would respond to messages I sent. When I felt up to it, I would respond to posts from my connections that helped me feel that I still was part of a community.

As I thought about it more and more, I decided to start a Facebook Group and called it Caring for the Caregiver. It is my hope that the site will go viral and attract caregivers who will use the site to share thoughts, experiences and support each other.

Please feel free to go onto Facebook, and join the group Caring for the Caregiver. If you know someone who is a caregiver, please encourage them to go to the page and become part of the community.

Thanks for reading Nurse Advocate! Have a good week. 

Sunday, November 20, 2016

I’m Still Standing

November 24, 2016, marks the anniversary of an event that interrupted my life in a way that I could never have imagined. 

November 24, 2014 was a clear sunny day. I was returning from an appointment and made a right turn, hit the curb, and blew out a tire. As I could not drive the car, I called my husband. When he arrived, I explained what happened and he said that I did not look right. I told him, I felt ok; but he thought something was ‘off’. He said he wanted me to go to the hospital, so off we went. After explaining to the Emergency Department physician what happened, I was sent for a CAT scan. Once the results were back, the doctor explained I had a mass in my head and would have to be admitted to the hospital for further testing. 

I honestly don’t recall my reaction to those words…and to this day have very little recall of the events that took place over the next few weeks. My husband, family, and friends have filled in some of the blanks. In talking to people over the past two years, most have said that the gaps in my memory are a blessing. In a way I agree, but feel sad that I don’t recall such an important time in my life.

During the early stage of my journey, I underwent a number of tests to determine if I had cancer in any other part of my body. Fortunately, I did not and it was determined that the brain was the primary source of the cancer. Once the tests were completed, the medical doctor overseeing my care, said he asked a neurosurgeon to see me.  As I was not myself, my husband felt that he needed some help in understanding the plan of care. He asked two of our friends and colleagues of mine to be present when the neurosurgeon examined me. Marilyn Van Houten, a nurse case manager and Cathy Bowers, a social worker/patient advocate came to the hospital to hear the Neurosurgeon explain his plan of care. He was not happy to see my two friends in the room, and wondered if they were attorneys. My husband explained they were our friends and my colleagues and we asked them to come so they could help us understand the plan of care he was going to lay out. He agreed to let them stay, but said they could not take notes. He went on to tell us that the tumor was not operable, but I would need a biopsy to determine the pathology. I recall asking the doctor who he would have perform the biopsy if this was happening to his wife, daughter or mother. He responded with an answer that scared me, saying that he would do the biopsy as he is the best! 

Those who know me, know that I would not like that answer or the fact that I was going to have a major procedure in a small community hospital. So once the doctor left the room, Marilyn and Cathy said they were going to collaborate and explore options and would get back to my husband as soon as they could.  

Later that day, Marilyn called my husband to tell him she had reached a Neurosurgeon at the University of Miami who agreed to see me as a second opinion. My husband talked to my treating physician the next day. He was not happy, but agreed to discharge me so I could go to the University of Miami. 

I visited the neurosurgeon a few days later. The doctor was sensitive and took his time explaining what they saw on the CT scan to myself and my husband. As expected he recommended a biopsy to determine the pathology which would dictate the course of treatment.  The Neurosurgeon recognized the severity of my case and scheduled the brain biopsy for the next day. The biopsy reveled that my tumor was a Primary Central Nervous System Lymphoma. Being at the University of Miami allowed the Neurosurgeon to coordinate an appointment with a hematologist/oncologist through the Sylvester Comprehensive Cancer Center who specialized in the type of tumor that I had. As I was showing signs of pressure from the tumor a stat consult was made with Dr. Lossos, the Hematologists/Oncologist. After seeing him, he admitted me to the hospital so I could be stabilized and started on chemotherapy. 

This course of care continued for the next few months. I was admitted every two weeks for 10 sessions of chemotherapy. I had to stay in the hospital for a few days after receiving chemo to ensure my blood levels reached a safe level for discharge according to the protocol. I did respond to the chemo and became more and more alert.

There is no doubt in my mind that because I had two advocates who helped me and my husband find a center of excellence where I was seen quickly, had a biopsy to provide the doctors with the information they needed to diagnose me, was seen by an expert in the type of cancer I had and was able to start treatment quickly, I am alive today.

Today, I am tumor free. My life is not the same as it was on November 23, 2014, but I am still standing! I had a very good outcome, but did have complications from the chemotherapy; bilateral foot drop and neuropathy in both feet. As a result, I need to wear braces to walk, use a cane for stability and am not able to drive. These complications have been challenging but I have not given up hope on further improvement, and I am working toward acceptance that these problems may be permanent. Today, I am focusing on my abilities vs. my disabilities.

I learned a great deal over the past two years which has allowed me to heal and gain some perspective on what happened to me. The one lesson that stands out for me the most is that being a patient is very difficult. As a result, I have focused my goals on using my experience and expertise as a nurse/case managers and patient advocate to educate people, caregivers and all members of the healthcare team on how to better navigate the complex world of healthcare.  I have done this in various ways over the past two years that include writing my Blog, Nurse Advocatesharing information on various social media sites and helping those in need to have a voice and find resources to meet their needs. 

As I celebrate Thanksgiving, I reflect back over the past two years and recall the things I am most grateful, the short list includes:

I am grateful to my husband who was by my side every step of the way and continues to support me as I move forward.  

I am also grateful to my family and friends who prayed and supported me during my journey. Each was there in their own way and continue to support me as I heal. They reminded me of the importance of remembering people in my life who are sick or challenged in some way. I have tried to ‘pay it forward’ by sending a note, making a call or visiting a friend or family member who is sick, displaced or having a difficult time.

I continue to be grateful to my healthcare team. Specifically to Dr. Lossos and his counterparts who treated me, supported me and continue to monitor me in case of re-occurrence.  

I am grateful to the clinical and administrative team who supports Dr. Lossos. Specifically Keisha, Dr. Lossos office manager who continues to be responsive to my questions and request and always get back to us in a timely manner. I am grateful to the nurses, the pharmacists, aides, housekeeping staff, food service team, Chaplin and so many others who cared for me on the Oncology Unit at Sylvester Comprehensive Cancer Center. Each made an impression on me and did their part to help me through a very scary and difficult time in my life. They were professional, caring and responsive to my needs and I am forever grateful.

When I was not in the hospital, I utilized the outpatient clinic services through the satellite centers that are part of the Sylvester Comprehensive Cancer Centers. Each center functioned professionally and provided the care that allowed me to progress and improve,  and for that I am grateful.

I am equally grateful to the team at Health South Rehabilitation Hospital in Sunrise Fl. where I received physical, occupational and cognitive therapy both as an inpatient and then as an outpatient. The experience allowed me to gain confidence and improve physically as well as mentally. Today, I am finished with formal therapy but have continued to exercise by swimming and doing water aerobics at Central Park Aquatic complex in Plantation FL. I have enjoyed the exercise as well as the support I have gained from the men and women who are part of the water aerobics program. 

My healthcare journey has allowed me to meet many people that have educated and empowered me along my journey. They have included oncology professionals, other cancer patients and support staff in the various settings who supported me and my husband at various times. In general people have been kind and supportive and for that I am grateful.

As I have improved, I have tried to use my personal experience to help improve the system. Examples include being asked to be a member of the Patient and Family Council at Sylvester Comprehensive Cancer Center. In addition, I have reconnected with many of my professional and community groups that are important to me. These include the South Florida Case Management Network where I am a member of the Board of Directors, The Patient Advocate Certification Board where I am part of a dynamic group of professionals focused on developing a national certification in patient advocacy. I have re-activated my membership in Quota International of Plantation FL, and joined a group of women that make up the Heroines Choir. Each of these organizations have allowed me to move forward and regain my professional confidence.  

In 2017 I look forward to continuing to make progress and remain healthy. I also am looking forwarding to continuing to contribute as a healthcare leaders by mentoring and educating those interested in patient advocacy and case management. I look forward to returning to work with a renewed vision that will allow me to assist those in need to successfully transition through the broad and complex healthcare system.

As I look back on the past two years, I realize my world was turned upside down but I am still standing and for that I am grateful. 

I know I am not alone as so many people are thrust into the complex world of healthcare in the blink of an eye. If you or a member of your family has had a medical challenge that has rocked your world, know that you are in my thoughts and prayers. 

I am grateful to be here, to be recovering, and to have family, friends, and colleagues who support me unconditionally. For all of these things, I am most grateful.  

None of us know what the future will hold for us, but I am looking forward to the ride!

Thank you for reading Nurse Advocate and I wish you and your family, a Happy Thanksgiving. 

Sunday, November 13, 2016

Moving Forward

With the election behind us, we now know who the players will be for the next four years.  Now we await to see how President-Elect Trump will implement the talking points that got him elected. I for one, hope he does well and will be watching closely as he chooses who will be in his Cabinet and the advisers he surrounds himself with as he transitions to be the 45th President of the United States.

As an ‘outsider’ he will need the advice of thought leaders to assist him in understanding the current status of laws that govern our country as well as the implications of making changes. This is especially true in regard to healthcare. 

One of his key talking points from the campaign was the promise to repeal and replace The Affordable Care Act. The Affordable Care Act was passed in 2010, but many of the pieces of the Act are still being implemented.

I think all would agree that the ACA is not a perfect piece of legislation, but it did accomplish several important goals that are fundamental the welfare of the country. These include:
Helping over 20 million people who did not have healthcare coverage, purchase affordable healthcare covergage.
The Act, took away the challenges that those who had pre-existing conditions faced in obtaining healthcare insurance.

Third, the Act also started to change how healthcare is provided, by helping to put into place strategies that allowed the healthcare to move from a sick system to a system that encouraged prevention, early detection of conditions, and guidelines physicians and others could use to ensure treatment is based on evidenced.  

Since the implementation of the ACA, a great deal of work has been done and gains have been made throughout the healthcare system that has slowed escalating healthcare costs and improved the delivery of care. In addition, changes to the reimbursement rules have helped providers and organization refocus strategies to improve the quality of care provided and demonstrate value for the dollar spent. These changes are just starting to produce the results that will allow healthcare to be sustainable for our country.

With the US Healthcare system spending reaching 3 trillion and 17.5% of the GDP there is a call for all stakeholders to demonstrate value for the dollars spent. The implications of making changes that reverse the current path of the ACA will have major repercussions throughout the healthcare system as well as on the US and global economies.  It is my hope that the President-elect and his team carefully exam the current law and see what is working and what things in the law can be refined now that we are this far into the implementation of the law.

I will continue to take an active role in following health policy and will continue to share information that all consumers of healthcare can use to understand how these challenges impact them. I ask all readers of Nurse Advocate to stay informed and to use your voice and expertise to educate and empower our President-Elect, our legislative leaders, fellow consumers and all members of the healthcare team as we move forward.

Here is a link of some of the top leaders views on What's Next: 

Thank you for reading this post. I look forward to your comments.

Have a good week!