When my husband’s mother lived in an excellent assisted living community, we found severe weather to be a challenge. Huge storms, no matter what the season, made it difficult to stay in touch.
Gail Sheehy’s November 3, 2012 article about elder and medical caregiving during Hurricane/Superstorm Sandy is posted over at Caring.com. It’s a must-read for adult children whose elder parents live in caregiving settings or if a senior parent expects visits from visiting nurses or other home care assistants.
In How Assisted Living and In-Home Care Providers Responded to Superstorm Sandy, Sheehy explains that senior caregivers and visiting nurses went to great lengths to ensure the safety and health of the people in their care. She also describes efforts to remain in touch with adult children and other family members.
Up and down the northeast corridor dedicated and caring individuals continued to provide care during the storm, sometimes even moving in with a patient for the few days so they could be sure no lapse in care occurred. Other nurses and caregivers waded through water, talked themselves through police roadblocks, and found novel ways to charge their portable devices.
We’ve all had experiences trying to accomplish a task that is way too hard — and one reason it’s so difficult is because the environment is not designed to help a person function and work efficiently. Many of us have watched our aging parents grow frustrated, especially in medical settings, where equipment and furniture is overly complex and where even simple things, like light switches, sometimes look like they belong in the complex control panel of an airplane. And it’s not just elders, but patients in general. In the biography by Walter Isaacson, Apple Computer’s Steve Job, then seriously ill and hospitalized, noted that hospital equipment needed dramatic redesigning.
To learn more check out Empowering Patients Through Design, a short article at Wired Science reporting on a speech at the Wired Health Conference. The October 15, 2012 article describes Michael Graves’ presentation, explaining how he became a hospital patient and then discovered that he could no longer function efficiently — even in a rehabilitation setting. The medical rooms, equipment, and other materials were poorly designed for people with disabilities.
Graves, a renown architect, found a new calling, combining his professional knowledge with his experience as a patient and becoming a proponent of human centered design. This type of architecture aims to make health care environments, as well as other settings, more comfortable and user-friendly. “I decided that since I was a designer and architect and a patient, I have the credentials to do this,” Graves said at the conference.
In health care human centered design focuses on every part of the patient’s care experience from hospital and patient rooms to floors, light switches, and even signs. Graves and his group have designed hospital furniture that takes the specific needs of patients into consideration.
Adult children who help aging parents should check out the Washington Post article At End of Life, Medicare Beneficiaries Spend Thousands Out-of-Pocket. Reporter Sarah Kliff explains that a recent study, Out of Pocket Spending in the Last Five Years of Life (abstract), published in the Journal of General Internal Medicine, examined the amount of money that aging Medicare recipients spend on health care during the last five years of life. The abstract leads to the first two pages of the study, freely available.
According to the Post article, “The average Medicare beneficiary spent $38,688 out-of-pocket during the last five years of life.” This is in addition to the portion that Medicare covers. The Post article also features two excellent charts.
Researchers studied people who died between 2002 and 2008 using data from the Health and Retirement Study (HRS), based at the University of Michigan. HRS is a large nationally representative study funded launched in 1992 and funded by the National Institute on Aging.
These tips for adult children and their families look like common sense suggestions. Often however, when family members seek an assisted living community for an elder parent, they need to make decisions quickly without much time to read all of the fine print and ask the less obvious questions. Sometimes time constraints can put common sense at the bottom of the list.
Check out item number eight in the Smart Money list, “We pay people to put you here.” A family needs to know a lot about the placement service itself before considering its recommendations for an assisted living community.
Our family was most fortunate to discover Chesterbrook Residences in Northern, Virginia, where my husband’s mother lived for nearly two years. Their policies were transparent and clear.
This short article over at Caring.com reminds us that Alzheimer’s is not just a disease for older and elderly adults. Moreover the story reminds us that our stereotypes and dysfunctional thinking, when it comes to people who are coping with serious diseases, can do much harm.
After a successful day of treatment at the University of Virginia Health System we were relaxed. We thought that we had considered every detail of Mom’s surgical adventure. Then at 4:00 a.m. a fire alarm went off in the hotel on the night after my mother’s surgery, and we had to evacuate the hotel immediately.
The evening after Mom’s surgery, glad that we were finished, we drove the two blocks back to the hotel. We ate lightly, cleaned up a bit, and went to bed early so that we’d be ready for the next morning’s 60-mile drive home. Around four in the morning we awoke to alarms blaring and fire lights flashing.
The four of us took more than eight minutes to get to the stairwell — way too much time. We pulled on jackets and pants, looked for shoes, locating three out of four pairs, helped my mom, grabbed purses, mobile phones, and a briefcase, and left the room (only some meds, no laptops, only one watch, etc.). With my mother hobbling along we made our way slowly down three flights of stairs, but she was a trooper. We left a lot of important things in that hotel room, but the most important goal is to get out, so that’s what we did. Fortunately, when we travel, my husband always checks out the locations of stairwells. Read more »
Tomorrow morning my 84-year-old mom — a woman who volunteers in election campaigns, walks or swims most days, consumes countless books and newspapers, power uses her computer, and has boundless energy — is having some serious surgery. We are spending the night in a hotel near the large medical center, which is also a teaching hospital. Mom spent most of the day today doing extensive preparation for her surgical procedure.
She will check into the surgery unit mid-morning, and our hope — if the best outcome occurs — is that she will leave the same day. We plan to return to the hotel for another night rather than driving the 60 miles home on the same day as the surgery.
There are two other possible outcomes, and both involve more complex surgery with possible nights as an in-patient at the hospital. My mom is not at all fragile, but we want to be sure to prevent as many age-associated hospital complications as possible
My husband I are both here with my parents. During the surgery we plan to wait together with my dad, age 89, and then, when the surgery is over, figure out our next steps. Read more »
Over the past several years we’ve heard a lot about the effectiveness of medical treatments. It’s frustrating to put together the puzzle parts on this issue, but especially so when a family member is ill with a serious disease. Sometimes going forward with a treatment feels better than seeming to do nothing. When aging issues are added to the thinking mix, decisions become even more complex.
In her New York Times Well blog column, When Less Treatment is More, Pauline W. Chen, M.D., points out that it’s often necessary for a physician to figure out when less treatment is better than more. Although quite a bit of research provides evidence and identifies treatments that are less effective, patients continue to receive those medical treatments, sometimes at great risk, because they or their doctors believe those are better care.
A medical treatment or surgery is considered effective if the desired outcome is achieved.
Dr. Chen describes research at Yale University School of Medicine that investigated whether radiation treatments after surgery were effective for women over age 70 with less invasive breast cancers and whether the patients lived longer. After examining the records of 13,000 women, the researchers found that the addition of radiation therapy to their treatments made little difference in their survival rate. Read more »