A Life Lesson from Aunt Berda – Coping with a Chronic Illness

My Aunt Berda was diagnosed with Multiple Sclerosis when she was 31. She was amazing as she didn’t even use a wheelchair until her late 70’s. I asked her about her symptoms one day and she explained to me that she had constant numbness and tingling. I was shocked. If you met my aunt, you would think that she didn’t have any physical suffering with her MS. But she did. I asked her about how she handled the symptoms while keeping her good nature. Here is what she told me.

She said that when she was first diagnosed as a young woman, she spent 30 days in the hospital paralyzed. She made a decision at that time that if she had to be a patient, then she would be a good-natured patient. She didn’t need to make life miserable for those who were caring for her. She said that every day she wakes up and “Chooses to be happy.” That it is an active choice. Maybe two days a year, the symptoms got the best of her but most of the time she kept to this decision. Did the MS affect her? Of course, but she kept her good nature and chose to give to others everyday. She was a wonderful listener and provided a supportive ear to all that interacted with her. I knew she was special but I was still surprised when a nursing assistant said to me, “Look at this.” I looked at the cell phone she held out to me and a picture of my aunt and this caregiver was the main picture on the phone. This caregiver said that my aunt was her best friend. And I didn’t even know about it. It was a powerful lesson in knowing that no matter what the circumstances we find ourselves in, we have a choice. We can choose to make a difference. We can choose to be happy. My aunt died last year but her lesson lives on.

Choose to have a kind and respectful day.

Choosing the “Least Worst Option”

Sometimes we have to choose between, not a good option and a bad option, but between two terrible options. I have been in this situation before when making decisions for my dad with his worsening dementia, and what helped me was something I read. Sometimes we have to pick the “least worst option.” What does this mean? It means you don’t have a good answer or a good choice. All you can do is to pick the least terrible option. Because that is your best option. I know this is terrible, but sometimes we have to make peace with this dilemma. Of course, we first have to work very hard to figure out if there are other better options available and ask other people for help. But sometimes it comes down to a decision that will never feel right or good. Just do the best you can and pick the least worst choice.

Have a kind and respectful day.

Jacqueline Marcell, Author of Elder Rage, May 19th, 5PM pst, on blogtalkradio.com/kindethics – “Strategies for Dealing with the Difficult Aging Parent.”

I will be interviewing Jacqueline Marcell, Author of Elder Rage, May 19th, 5PM pst, on blogtalkradio.com/kindethics – “Strategies for Dealing with the Difficult Aging Parent.”

It is my pleasure to introduce you to JACQUELINE MARCELL – (949) 975-1012

JACQUELINE MARCELL was so compelled by caring for her elderly parents, both with early Alzheimer’s not properly diagnosed for over a year, that once she figured everything out she gave up her stalled career as a television executive to become an advocate for eldercare awareness and reform. She is the devoted daughter in her best-selling book, Elder Rage (www.ElderRage.com) a Book-of-the-Month Club selection being considered for a film. Over 50 endorsements include: Hugh Downs, Regis Philbin, Johns Hopkins Memory Clinic, and the National Adult Day Services Association who honored her with their Media Award. She also received “Advocate of the Year” from the National Association of Women Business Owners at their Remarkable Women Awards.

Jacqueline is a sought-after international speaker who has spoken at hundreds of events including to the National Security Agency and Florida House of Representatives. She’s been interviewed on the TODAY SHOW and CNN, and was featured on the cover of the AARP BULLETIN. Jacqueline also hosts a radio show, Coping with Caregiving on wsRadio.com, where 7 years of her interviews with healthcare professionals are archived for free listening-on-demand: www.wsRadio.com/CopingWithCaregiving. She also writes columns for AgingCare.com (www.agingcare.com/Experts/1108/Caregiving) and ThridAge.com (www.thirdage.com/expert-voices/jacqueline-marcell), and as a breast cancer survivor, Jacqueline advocates that everyone, especially caregivers, closely monitor their own health. Her website is www.ElderRage.com.

JACQUELINE’S MISSIONS ARE TO: encourage long-term care planning; enlighten healthcare professionals how they can better help the families they work with; empower caregivers with solutions and hope, and to always put their own health first; encourage funding for Alzheimer’s research and heighten early diagnosis awareness; expose elder abuse and exploitation; advocate for funding for Adult Day Care Services; and to help improve eldercare laws.

KEY POINT: The importance of EARLY diagnosis and treatment of Alzheimer’s–and that there can still be a good life after a diagnosis of dementia, if it is properly balanced medically and behaviorally.

STARTLING ELDERCARE STATISTICS

• There are 78 million US Baby Boomers (those born 1946-1964) among 300 million. Every year, more than 50 million Americans provide care for a chronically ill, disabled or aged family member or friend.

• The average life expectancy at the turn of the last century was 47. With advances in medicine, in 2008, average life expectancy is 82.1 for males and 85 for women.

• By 2025, there will be over 62 million Americans over the age of 65–almost double in 25 years.

• The fastest growing segment of our population is the 85+ group–and half of them need some help with personal care.

• Over 5.1 million Americans have Alzheimer’s–more than double since 1980. 1 in 10 say they have a family member with Alzheimer’s, and 1 in 3 say they know someone with the disease.

• Alzheimer’s does not happen overnight. It begins to attack the brain 10 to 20 years before the first symptoms. A person will live an average of 8 and as many as 20 years from the onset of symptoms.

• Increasing age is the greatest risk factor for Alzheimer’s. 1 in 8 over age 65, and nearly half over the age of 85 are afflicted. Rare, inherited forms can even strike victims in their 30’s and 40’s.

• More than 7 out of 10 people with Alzheimer’s live at home, where their family and friends provide 75% of their care. The remaining 25% is paid-for care costing an average of $19,000 per year–which families pay mostly all out-of-pocket.

• By 2012, 75% of Americans age 65 and over will require long-term care–an estimated 43% to spend time in a nursing home. Half of all nursing home residents have Alzheimer’s or a related dementia.

• The annual cost of Alzheimer’s care in the U.S. is at least $100 BILLION. With 78 million Baby Boomers reaching their Golden Years soon, our health care system will be overcome, bankrupting Medicare and Medicaid.

• The estimated annual value of all types of informal caregiving is $257 BILLION.

• Medicare expenditures for people with Alzheimer’s are nearly 3 times higher than the average for all beneficiaries. Half of all Medicare beneficiaries with dementia also receive Medicaid because they have exhausted their own resources.

• Alzheimer’s Disease costs American business $61 BILLION a year–60% of that is the cost of the lost productivity and absenteeism of workers having to take time off to care for their sick loved ones.

• By delaying the onset of Alzheimer’s Disease in individuals for five years, we could save 50% in annual health care costs. Even a one-month delay in nursing home placement is estimated to be able to save $1 BILLION a year. Early diagnosis and treatment is the key.

Doctors could get paid to listen to patients about their end of life wishes. Help is on the way with H.R. 1898 being proposed in the House.

H.R. 1898 is being proposed in the United States House of Represented. What this bill does is to provide financial support for doctors to have meaningful end of life conversations. This is amazing. Right now, doctors get paid to take action. Now they could get paid to stop and spend time talking to patients and families about important end of life decisions. And I will tell you, doctors do what they get paid to do. If they get paid to go to surgery instead of allowing physical therapy to work, then they will go to surgery. This proposed legislation is historic. Being paid to listen and respect the patient’s wishes while designing an appropriate end of life care plan would be great. This is a great beginning to shifting the culture of medicine by changing what priorities will be paid for by Medicare.

Say Thank You To A Nurse Today. May 6th – 12th is National Nurse Week.

May 6th – 12th is National Nurse Week

I want to say thank you, thank you, thank you to all of the nurses. Whether you are a hospital nurse, a home health nurse, an office nurse, a nursing home nurse, a surgical nurse, a hospice nurse or some other type of nurse, thanks for everything you do. And thanks for putting up with the doctors. And thanks for putting up with the patients and their families. We all don’t make it easy for you. But you still show up and take care of us.
I truly appreciate you and hope you will keep being a nurse. We need you. I encourage every one to do something nice for a nurse today. Maybe send a thank you note to the nurse that works at your doctor’s office or drop off a healthy treat. If your loved one is in a care facility, do something nice for the nurses there. Maybe offer to volunteer one day a month and help with meals at the skilled nursing facility. Anything you can do will help. We already have a shortage of nurses so if we want the future to be safe for us, be nice to a nurse today and remember to thank them all year long.

Are Mixed Messages Harming Your Health?

When you are in the hospital, you are vulnerable to the problem of “Mixed Messages.” What this means is that each of the specialists come in and give you information about the part of the body they take care of. So the pulmonary doctor will say, “Your lungs are doing better.” The cardiologist will say, “Your heart is failing.” And the internist will say, “Your infection is getting under control.” But nobody is giving you the big picture. Nobody is telling you how to interpret all of these pieces of information about your health situation. So here is what happens next. The next day your internist comes in to talk to you about end of life issues. You are shocked and ask, “How can I be dying when my lungs are doing better?” You have just done what most people do. You latch onto the best news and forget to take into account the worst part of the news. Yes, your lungs might be better, but you can’t live without your heart and your heart is failing. But nobody is explaining this to you.

Nurses do the same thing. Each day, different nurses are assigned to you. And each nurse has a slightly different view of how you are doing. Or they say, “You are doing better.” What does “better” mean? It doesn’t mean better and you are going home, it means you are doing better than the worst moment you have had in the hospital. Lots of people die in hospitals that are doing “better.” Better doesn’t tell you the whole story.

So what can you do? You can ask the main doctor, called the attending, to give you an overall update about how you are doing. Not just a part by part explanation, but a “big picture” explanation. And if you are getting mixed messages, make sure you listen to the good and the bad. I know that this can be difficult but it is necessary so you can make appropriate decisions about your health. The only way you can have informed consent is if you understand all of the information, not just the news you want to hear.

Have a kind and respectful day.

Is Your Patient Being Harmed By Mixed Messages In The Hospital?

When you and your colleagues are rounding on the patient, each of you gives the patient/family an update on the patient’s condition. The pulmonary doctor will say, “Your lungs are doing better.” The cardiologist will say, “Your heart is failing.” And the internist will say, “Your infection is getting under control.” These are all true statements but the patient gets confused. Patients tend to focus on the good news you have given them and forget the bad. So when you come in later to talk about a DNR, they are shocked because patients don’t understand how the organ systems work together. This is one of the primary reasons people don’t want to sign a DNR. They don’t understand the big picture about their health. They don’t understand that your lungs can be better and you can still die because your heart is failing. And I am not even talking about the miscommunication that can occur because of language differences, medical illiteracy, language illiteracy, cultural differences and differing levels of capacity. All of these make things worse.

But you do have power when it comes to mixed messages. Make sure the attending is speaking to the patient or the family every day and giving them the big picture. The attending needs to explain how the overall view is for recovery. Some hospitals are creating a, “Captain of the ship” policy to mandate these big picture updates. This can become especially important when the patient shifts from being a surgical patient to a medical patient. It the captain of the ship needs to change, make sure the new captain now knows that they are in charge.

Nurses can do the same thing. Each day, different nurses are assigned to the patient. And each nurse gives a slightly different evaluation of the patient. Or they say, “You are doing better.” What does “better” mean? It doesn’t mean better and the patient is going home, it means that they are doing better than the worst moment they have had in the hospital. Lots of people die in hospitals that are doing “better.” Better doesn’t tell you the whole story. So, please be careful and give clear information. And you may have to give the information multiple times, especially if it is bad news. It takes much longer for bad news to sink in than good news. And it would for you too, if you were the patient.

Have a kind and respectful day.

On Monday, May 11th at 2PM PST, blogtalkradio.com/kindethics, I will be interviewing Frances Shani Parker, author of “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

On Monday, May 11th at 2PM PST, blogtalkradio.com/kindethics, I will be interviewing Frances Shani Parker, author of “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

She is an award-winning writer, consultant, and former school principal, Frances shares insights and experiences about her years of hospice volunteering in Detroit nursing homes. Using stories, poems, and general information, she has written a groundbreaking book that is an inclusive and literal guide for becoming dead the right way. Topics include hospice, caregiving, dementia, death, bereavement, and strategies for improving eldercare and nursing homes. While universal perspectives are presented, the often missing views of people of color and residents in urban nursing homes are examined.

Frances’ background as an educator and her upbringing in New Orleans, LA add interesting layers to her problem solving in nursing homes and to her descriptive storytelling. She uses her writing and public speaking skills to advocate for senior citizens and promote conversations empowering others to have dignified death journeys. Her favorite anonymous quote is “If you think one person can’t make a difference, you haven’t been to bed with a mosquito.” Visit Frances in cyberspace at www.francesshaniparker.com and at her blog titled “Hospice and Nursing Homes Blog.”

She welcomes your questions and calls. You can call in to listen or to ask questions at (347) 945-5152.

Have a kind and respectful day.

Wash Your Hands or Use Hand Sanitizer – And make sure the medical professionals who are touching you are doing the same

I just finished reading, Complications: A surgeon’s notes on an imperfect science by Atul Gawande. A fascinating read into the world of surgery and the recovery process. In this time of swine flu, he brings up an important point. Wash Your Hands or Use Hand Sanitizer. And more importantly, make sure your doctor and all the people who are touching you in while you are in the hospital, wash their hands or use hand sanitizer. It was interesting to read about how diligent surgeons are in the operating room about keeping you safe from germs. But when they visit you in your hospital room, they are less cautious and sometimes forget to wash. And it is not just surgeons, it is everyone in hospitals. I think what I might do the next time I am a patient in the hospital or visiting someone in the hospital, is to make sure I bring in a large bottle of hand sanitizer to keep by the patient’s bed. That way, the patient can take charge and make sure that everyone that touches them has cleaned their hands. And that also includes the visitors. I hope that a long term side effect of the swine flu scare is that people keep washing their hands even after the scare is over. It is one powerful thing we can do to protect ourselves and the people we love throughout our lives.

Have a kind and respectful day.

On Wednesday, May 4th, 8AM pst, blogtalkradio.com/kindethics, I will be interviewing Dr. Mark Apfel, “Having the POLST Conversation With Your Patients”

On Wednesday, May 4th, 8AM pst, blogtalkradio.com/kindethics, I will be interviewing Dr. Mark Apfel, “Having the POLST Conversation With Your Patients”

Dr. Mark Apfel is a physician champion working with the California Coalition for Compassionate Choices, finalchoices.org. He will be discussing how the POLST form will be helping physicians and patients. He will also be answering questions about how to use the form with your patients as well as how to discuss these end of life issues with your patients.

To listen or to call in dial (347) 945-5152. Or go to blogtalkradio.com/kindethics or go through the blogtalkradio link on the right side of my blog.

Have a kind and respectful day.

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