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 2)

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

Let’s recap where we are in my story: When I last wrote, I talked about learning my diagnosis with esophageal cancer and working through the process of making care and treatment decisions.  I opted for additional scans to test for metastatic disease (cancer that’s spread beyond the original tumor), and I was able to do so for several important reasons: I decided, took charge, and planned for the possibility that a spot on my liver could be confirmation of metastatic disease.

Much to my amazement, I was informed that, in fact, the liver spot was simply a hemangioma (noncancerous growth due to an abnormal collection of blood vessels), and the oncology team was recommending a full blast treatment approach with a way more optimistic outcome than I believed possible. Thus, I weighed the possibility of better quality of life against the risk of treatment just making things worse.

I decided to go forward with treatment—a combination of 5 weeks of daily radiation, chemotherapy, and then surgery if the response to treatment was good. Surgery being the reward, as it is only done when cure of current disease is noted.

This entire process at my age (a few months from 60) made me realize that, no matter what age one is when diagnosed with a potentially life threatening disease, decisions around treatment are tough. Did I have things to look forward to? Of course: a recently awarded research project grant from the National Institutes of Health, a fourth grandchild on the way, and many other professional and personal goals I still wanted to achieve.

Many older adults have an equally expansive list of things they’re looking forward to. They will tell me they still enjoy playing bridge, want to finish a professional paper or book they are working on, and want to continue going to dinner with friends and seeing family. I will never again assume that an older adult does not want to pursue a treatment option when faced with a new and what might be life-ending diagnosis.

I have always believed my responsibility to patients was to inform them of the pros and cons of treatment options to help them decide on an approach most consistent with their goals. For older adults, cancer treatment or surgical interventions for cardiovascular disease may make their quality of life worse and even hasten death, but the decision to forego the treatment may still be difficult.

Whether you are a healthcare provider or a friend or relative of someone having to make these decisions: be open and supportive. and try to empathize. I still don’t know the outcome of my decision…but I am living with the consequences, doing the best I can to cope with the daily challenges, pulling on my own resilience and the resilience I have learned over the years in doing geriatrics, and hoping that I will come out on the other side and say it was a good decision!

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.)

Aging and Hearing Loss

Alice Pomidor & John Reynolds

Palmer MH high(8) res

Alice Pomidor, MD, MPH, AGSF
Professor
Florida State University School of Medicine

Mary Palmer, PhD, RN, FAAN, AGSF
Helen W. and Thomas L. Umphlet Distinguished Professor in Aging
UNC School of Nursing

You may find yourself turning up the volume on your favorite TV shows. Conversations in restaurants or other public places may become harder to understand—and you may find yourself wondering when these places got so loud. During a chat, you may ask a friend to repeat herself because you couldn’t hear words, or you may even find yourself “cupping” your ear in order to hear her better. If you, or someone you care for, has these experiences, they can be signs of possible hearing loss.

Older adults can experience hearing loss that ranges in severity from minor to major. It is the third most common chronic health condition affecting older adults—about 1 in every 3 people aged 65 or older has some degree of hearing loss. By the age of 85, as many as 70 to 90% of people will have some hearing loss. The condition tends to be more common in men than in women.

Hearing loss can lead to symptoms of depression and lead to feelings of isolation.What’s more, research suggests that older adults with hearing loss can also have cognitive problems. In fact, in one study of people aged 70 to 79, hearing loss was linked to faster cognitive decline and impairment, whether or not they were having other symptoms.

Finally, in a recent study published in the Journal of the American Geriatrics Society, researchers found that when older people with hearing loss wear hearing aids, their mood and social interactions improve, which might slow cognitive decline. Continue reading

Aging and Vision Changes

Alice Pomidor & John Reynolds

Palmer MH high(8) res

Alice Pomidor, MD, MPH, AGSF
Professor
Florida State University School of Medicine

Mary Palmer, PhD, RN, FAAN, AGSF
Helen W. and Thomas L. Umphlet Distinguished Professor in Aging
UNC School of Nursing

In our previous blog post about eyesight, we discussed a number of vision problems that people may experience as they get older.  However, many people will experience age-related changes that are not eye diseases.  For example, you may begin to notice changes in your night vision—such as having trouble seeing stars on a clear night, or finding that it’s more difficult to navigate in a dark movie theater. Your eyes may also adjust more slowly to sudden changes in light. Glare and bright lights may trouble you, and that may make it harder to drive at night.

What’s more, working on the computer, reading printed material, or doing close-up projects like sewing, knitting, or woodworking may become more difficult as you age. Often, you can correct these problems easily by using brighter lighting or getting reading glasses.

Vision changes can lower your quality of life and increase your risk for having household accidents, or even car crashes. That’s why getting a yearly check-up with an eye specialist is important.  (See our previous blog post for a handy guide to eye specialists.)

Here are some tips on how to keep vision as sharp as possible for as long as possible:

  • Schedule yearly visits with an eye specialist.
  • Regularly check all medications for any side effects they may have on your vision. Common vision-related side effects include dry and irritated eyes. Antihistamines, allergy medications, antidepressants, tranquilizers, and some high blood pressure medications can cause dry eye.
  • Make sure that items on your floor (such as electrical cords, throw rugs, and knick-knacks) are removed or rearranged so that they are out of the way and you don’t trip over them. Also watch out for pets who can have a way of getting under your feet!
  • Brighten your home and make objects more visible. Here’s how:
    • Use adjustable desk, floor or table lamps close to your working area to shed more light when you’re reading or doing close work.
    • Avoid clear glass light fixtures to reduce glare.
    • Minimize window glare with opaque blinds, curtains or shades.
    • High-quality fluorescent light bulbs make it easier to see colors than conventional incandescent bulbs. What’s more, fluorescent bulbs spread light over large areas without glare, use less energy, and last 10 to 20 times longer than incandescent bulbs.

Just a few steps can make a big difference.  Check out our online resource on vision problems for even more suggestions!

Drs. Pomidor and Palmer are the Chair and Vice Chair, respectively, of the American Geriatrics Society’s Public Education Committee.