How to Be the Best Caregiver/Care Coach You Can Be (Part Two)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

Remember my recent blog post about being a terrific caregiver and care coach?  Here are some more tips based on my professional and personal experience.

Remember, Actions Speak Louder Than Words

You may not be an individual’s primary caregiver or care coach. You may just want to show you care. We all have people in our lives we really care about who have received some type of life-threatening or life-impacting diagnosis.  It could be anything from experiencing a hip fracture or a stroke, or a cancer diagnosis requiring treatment or palliative care management (comfort care).

It is hard in these situations to know how to respond and what to do.  Personally, I am a big believer in “actions speak louder than words.”  It never hurts to reach out to someone you care about who is undergoing treatment or who needs help and support coping with a long-term illness or disability.

Never be afraid to just DO or SAY something. Don’t be afraid to let the person know you heard about their illness and wish them well.  Show you care in any and every way.  Don’t hesitate because you are afraid you are intruding on the person’s privacy. If you heard about their illness, it is no secret!

Avoid Useless Gestures

Personally, I recommend against saying things like “let me know if I can do anything” or “call me if there is anything I can do.”  Essentially, when someone is ill they are not likely to pick up the phone and call for help.

Instead of empty gestures, provide words of encouragement that may have helped you in the past. For example, when I first started my course of radiation and chemotherapy, a colleague sent me a quote that Christopher Robin said to Winnie the Pooh:  “Promise me you’ll always remember that you are braver than you believe, stronger than you seem, and smarter than you think.”  I put this on my desktop and read it daily to help me through my own challenging treatment.  Continue reading

How to Be the Best Caregiver/Care Coach You Can Be (Part One)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

As someone who is generally the caregiver—professionally and as a woman, mom, wife and daughter—I have had the opportunity to learn recently what is most helpful when being on the receiving end of caregiving. My thoughts combine my professional work as well as the personal experiences I have had with the health care system and with some challenging health care issues.

There is a difference between short-term caregiving events (such as helping someone after a joint replacement, fracture, or cancer treatment), compared to long-term caregiving events (such as caring for someone who has had a major stroke or who has dementia or Parkinson’s disease).  The approaches recommended here can be used for both short- and long-term caregiving.

My most recent thoughts come from going through an extremely aggressive course of radiation and chemotherapy.  In this treatment, the health care team is focused on destroying cancer cells and not necessarily on helping the individual undergoing treatment cope.  Therefore, a caregiver, or what I like to think of as a “care coach” or “care champion,” is essential.  That role generally falls on family, friends, or co-workers.

Based on my experience, here are some ways to be a terrific care coach. Continue reading

Decisions, Decisions (Part 1)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

A cancer diagnosis, particularly a second cancer diagnosis, is difficult at any age. Bordering on being a geriatric patient (in Maryland older adults are defined as those 55-years-old and older), I was diagnosed with my second cancer. The first one was 18 years ago when, at the age of 41, I learned I had breast cancer.

At that time, with teenage children and much of life (hopefully) ahead, the decision was not so much whether or not to go for treatment but rather what treatment to endure….the options for me being removal of all breast tissue (also known as a) mastectomy with the possibility for reconstructive surgery, as well as chemotherapy (the medical term used for treating cancer with special types of medications). The chemotherapy was actually based on clinical research into effective options for my type of cancer. A researcher at heart, I of course consented to that study—and 3 others!

Almost twenty years later I was faced with a new decision around a second cancer and whether or not to undergo a diagnostic workup, pursue treatment, or to crawl into bed and call Hospice (a type of supportive healthcare given to people with serious or terminal illnesses). I started developing difficulty swallowing, and after being diagnosed by multiple providers with a digestive disorder known as gastroesophageal disease, I finally was sent for an Esophagogastroduodenoscopy (EGD, or a procedure to diagnose and treat problems in your upper gastrointestinal tract).

I was told, quite bluntly, I had esophageal cancer. I was neither a smoker nor a drinker and had no risk factors short of a very strong familial history with both parents having multiple malignancies. Decisions needed to be made this time, as I was not particularly anxious to endure treatment and worried about what we see all too often in geriatrics: treatment just making things worse.

On the flip side, my quality of life was not particularly pleasant given that I couldn’t eat or engage in the social activities that go with eating (going to dinner meetings or lunches, going out socially, etc.). I had significant pain and gastroesophageal symptoms associated with the tumor and I feared what death would be like if I let nature take its course. I wrestled with that thought along with my age, almost 60, and the value of using health resources on me at this point in time.

I further wondered how I could progress toward the end-of-life (aside from starving to death), since I was otherwise healthy—a lifelong vegetarian, runner, far from even a moderate drinker, and a non-smoker. Weighing the pros and the cons, I did follow medical advice and the push of family, friends, and colleagues, and I connected with an oncology group that has expertise in esophageal cancer.

Additional decisions needed to be made as I went through a work up for metastatic disease (which refers to a cancer that has spread beyond the original tumor), as initial scans showed a spot on my liver. Pending the results of this additional testing, I would need to decide if I would pursue palliative treatment, or healthcare focused on helping me manage pain. For anyone who has gone through this period of limbo or has friends and relatives that have to endure it, you know what I know: it’s extremely difficult.

I knew (having been through chemotherapy before) that I was not going to consent to palliative treatment, so I made a decision, engaged my resources (I have a daughter who is a nurse!), and planned for a death with dignity. I might add I cleaned closets, organized who would teach my summer course, and took over several ongoing and some new research studies, as well. I decided, took charge, and planned in the event that the spot on the liver was confirmed as metastatic disease.

(Stay tuned for Part 2 next week.)

2016 Medicare Open Enrollment Is Underway – Don’t Miss Out!

Shah headshotKrupa Shah, MD, MPH
Assistant Professor
University of Rochester School of Medicine & Dentistry

Medicare open enrollment only comes once a year. It is important that you mark your calendar and consider enrolling or reviewing your plans, especially if your needs have changed. Are you fully satisfied with your current medical care? If not, this is the right time to consider your options. Choosing the right healthcare providers, hospitals, and other care settings can make all the difference in your health and satisfaction with life. You can’t stand still, though.

Who is eligible for Medicare?

  • You are eligible if you are:

1) a US citizen 65 years old or older, or

2) a permanent resident of the US for five continuous years and 65 years old or older.

  • Individuals younger than 65 years old can be eligible for Medicare under certain circumstances; the Medicare Eligibility Calculator can help determine if your situation qualifies you for Medicare.

Open enrollment for Medicare runs from October 15th to December 7th.

  • Your demand for health care is constantly changing. It is important for you to review your coverage and see if you need to make any changes to your coverage for the upcoming year.
  • If you are happy with your current coverage, there is no need to do anything.

Continue reading