Spread the word! The National Private Duty Association (NPDA) is hosting a consumer/family caregiver educational web conference, Depression and Older Adults – What Every Caregiver Should Know. The live and interactive consumer-oriented event will be offered March 13, 2012, at 8 p.m. ET.
When faced with life altering issues such as illness, death, and depression, seniors may find themselves in an unfamiliar position of dealing with heavy feelings and how to move forward. Perfectly capable adults who are distraught like never before may suddenly wonder what to do when confronted with overwhelming emotions.
Today’s seniors grew up in a time when people often didn’t share their feelings openly. It was not socially acceptable to disclose secrets of life-threatening illness or feelings of hurt or depression. However, today’s society is not only accepting of a person in a vulnerable state, but it also offers avenues for guiding that person to many types of support groups. Isolation is no longer necessary. Others are experiencing similar issues and are willing to share and provide a safe place to show up and ask for help.
Adult children or caregivers may often be the first line of defense when a senior is struggling. Family can be a good place to start to find support. Even seniors who are reluctant to share their emotions or feelings may seek help from their adult children or caregiver first. While that may be a good option for some people, it may also be a relief to find support outside the immediate circle of contacts.
When the adult child or the caregiver is ill-equipped to counsel the senior, or if they themselves need help, support groups may be the answer. Support groups are available for any ailment or situation. It just takes the willingness to participate and a little research to find the right one.
What is a support group?
The good news is that support groups exist for all kinds of ailments and situations. While many groups hold meetings in hospitals, churches, schools, homes, libraries, or community centers, others are available online. The Daily Strength website offers immediate access to anonymous support groups who meet online. People who are dealing with common types of issues come together and strengthen each other by sharing their feelings, experiences, and suggestions related to those issues and their own situation. Participants can relate to what others in the group are going through and therefore don’t feel alone.
Group leaders may be professional facilitators, such as nurses or psychologists, or peers may lead. It is up to the group members to decide what they are seeking from their leader. Trained facilitators offer a more professional approach to dealing with the issue at hand, while peer groups tend to offer more emotional support and a shared experience approach.
Additionally, support group participants often benefit from information shared during meetings. Genetic Health says that oftentimes people in support groups easily share information about medical treatments, research, and strategies for dealing with an ailment. Other helpful information can also include public policy, legal resources, privacy laws, protection from discrimination, and connections to financial assistance and scholarships. Uncovering this information on one’s own could take months with a concerted effort, but in a support group, that information is shared readily.
Tips for finding a support group
Characteristics of a good support group
While each person will seek something different from support groups, participants must ultimately feel comfortable attending meetings and sharing their thoughts, feelings, and experiences. The common characteristics that generally create a well-functioning group are:
The Mayo Clinic says that the benefits offered by support groups are unmatched and unlimited for a person struggling with an issue. People get something different out of the same meeting, depending on where they are in their experience and how willing they are to accept help. Benefits from joining and participating in a support group are:
Seniors who are dealing with new issues or issues that continue to plague their daily lives and hinder them from enjoying a productive life should investigate support groups. An adult child, caregiver, friend, or doctor can help find the right place for the senior to engage in getting help through the unique opportunity of support groups.
Adult children and caregivers also have access to support groups. Being responsible for a senior’s care can be frustrating, emotionally and physically draining, and overwhelming. People often need help, and sometimes that help is just a support group away from changing a life.
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More than 70 percent of adult Americans do not have any form of an estate plan legally filed, according to Good Morning America financial contributor, Mellody Hobson. Yet, the process of setting up an estate plan is actually less complicated than one may think. Seniors come from a generation where it was inappropriate to discuss money and death, and therefore, many adult children may find that their parents do not have the appropriate paperwork in place to manage their estates. Or, the senior may not have formal paperwork because they feel that they will just hand down their belongings to their children so there is no need for it.
What happens to an estate without an estate plan
Without an estate plan, decisions about an individual’s property, medical, and final arrangements will be made without input from the individual. Attending doctors or the hospital will make medical decisions, family members will decide on burial arrangements, and state law will dictate the distribution of assets. These considerations alone may be enough to convince a senior that now is the time to formally organize their wishes for the treatment of their medical care and property.
Becoming proactive toward estate planning
Getting started may feel overwhelming, but keeping it simple and enlisting professionals can help streamline the process and bring peace of mind for the whole family. The conversation about estate planning can be a tough one to start with a loved one, but one that is well worth it in the end because of the time and money it will save the estate and the family members who must sort out the details. Caring.com suggests these initial considerations for anyone who is looking at his or her estate:
These questions all guide an individual to begin to set up an estate plan. Estate planning is a process where an individual indicates in writing how his or her money and other property should be managed while he or she is alive and after death, and what should happen in the event that an individual becomes mentally incapable of making financial or health-related decisions.
The basic documents that experts recommend that an individual have in an estate plan are a will or a living trust, a durable power of attorney for finances and health care, and advanced medical directives. Depending on the complexity of the estate, other documents may be necessary. Ask professionals, such as an estate attorney, an elder law attorney, a financial planner, and a physician, for guidance with these documents if you are not sure.
A will and a living trust
A will is the most basic estate planning tool and may be all the planning that someone needs. It is a document that names one or more people to manage a person’s estate and declares specific transfer of property. It could be made public and go through probate. A living trust is a more common estate planning document these days. It allows people to control their own assets during their lifetimes and then change ownership of the property in the trust to a named trustee at the time of death. The property is not processed through probate or made public.
Family Education cites three basic reasons why people write wills or create trusts. They want to:
Each state has laws regarding setting up wills and living trusts. MetLife has a booklet that helps guide people in creating a will. Download a copy of MetLife’s free booklet on “Estate Planning: understanding distribution of assets and estate taxes.”
Power of attorney for finances
With power of attorney document, an individual names a trusted person to handle their financial matters if they become unable to handle them on their own. In the event that this document is not on file when a person becomes mentally incompetent, a judge will then appoint someone to manage the finances for them, even if the person appointed is unfamiliar with the individual or their money matters.
If your parent wants to appoint you as their power of attorney, they should inform you of their decision and share with you their financial situation and specific wishes.
Advance medical care directives and power of attorney for health care
These documents are crucial when the individual is no longer capable of making decisions about life-prolonging treatments and medical care in a hospital, whether because of a lengthy illness or a sudden unexpected accident.
Advance medical directives specify your treatment wishes, such as a “do not resuscitate order”, tests, surgery, medication, and organ donation. This document clearly indicates which course of action the doctor, hospital and your appointed power of attorney for health care should take with regards to your health if you are unable to communicate that yourself.
The power of attorney for health care, or health care proxy, is someone that is named by the individual who is trusted by the individual to carry out the advance medical directives and to make medical related decisions that would align with the individual’s wishes should the advance medical directives not specifically cover that issue.
The person who is appointed as the power of attorney for health care should be very familiar with the wishes, any religious and cultural beliefs of the individual that could affect health care decisions. It is best to talk at length about all aspects of a potential medical crisis and the types of decisions that the individual would favor.
General rules of thumb apply as an adult child approaches estate planning conversations with parents. Always include as many of your siblings or other appropriate family members as you can, so no one feels like they are being left out of the process. The family may appoint one person to discuss all these estate planning documents with the parents or decide that working as a group would be best.
Keep the discussion focused on how to protect the assets the parents have worked so hard to acquire and how to protect their wishes when their health and comfort is at risk. Ultimately, the goal of estate planning is to allow the individual to feel like they have more control over their assets and their health/medical planning than they did before the creation of documents. Legally that is true, so the approach taken with the senior parents should reflect just that. Once the documents are drawn up, they need to be reviewed and revisited periodically or when there has been a life-altering event, such as a death or divorce.
Make your parents and their goals and wishes the primary focus of every discussion and the estate planning will move forward and provide peace of mind for the whole family.
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The American Cancer Society notes that approximately 1 in 4 seniors over the age of 70 are dealing with some form of cancer or have dealt with a cancer in their lifetime. When trying to put together the cancer treatment and recovery puzzle, especially as a senior, rehabilitation is an important piece. Medical professionals agree that rehabilitation aids in successful cancer recovery and helps patients achieve their highest quality of life. The goal of rehabilitation for cancer patients is to obtain the best possible physical, social, psychological, and vocational functioning.
As advances in cancer treatments, such as chemotherapy and radiation, extend lives, cancer often becomes a chronic – rather than terminal – condition. As a result, patients need to perform ordinary activities so that they can care for themselves for long periods of time. Rehabilitation makes this need a reality.
To garner the most out of a cancer rehabilitation strategy, patients must communicate well with their doctors and the other professionals who are involved in their recoveries. Rehabilitative support is most effective when the patient and the medical professionals collaborate and work out a recovery plan. Senior patients may have other health issues that can further complicate rehab, so it is even more important for seniors to talk candidly with their doctors about their limitations.
The National Cancer Act of 1971 first recognized the implications of the rehabilitation approach on the effects of cancer. This legislation declared cancer rehabilitation to be significant on a person’s successful recovery, and it funded the development of training programs and research projects. In the 1970s, the National Cancer Institute (NCI) cancer-control program created and supported many models for cancer rehabilitation.
Surprisingly, there is still a lack of formal cancer rehabilitation protocol in the medical community. A 2008 study of 202 cancer patients at the Mayo Clinic showed that patients may not be receiving proper guidance to get appropriate rehabilitation. Researchers observed that 66 percent of cancer patients reported some kind of functional impairment, mostly with walking or balance. Only 6 percent of these patient deficiencies were documented in the patient’s medical chart by physicians, and only two of those patients received referrals to rehabilitation services.
Similarly, a 2008 Mayo Clinic study revealed that only 21 percent of 150 patients who were impaired by metastatic breast cancer received physical or occupational therapies for weakness, swelling, muscle scarring, or shoulder pain.
“We need to raise awareness of the functional problems that cancer patients experience, and our obligation to address them,” said Julia Rowland, director of the Office of Cancer Survivorship at NCI, noting that there are now 12 million cancer survivors in the United States.
Why the gap between treatment and rehab?
Medical experts believe that rehabilitation continues to be widely underused because oncologists do not routinely ask patients about their ability to perform everyday activities and Activities of Daily Living (ADLs), nor are they in the habit of ultimately referring cancer patients for rehab services.
Additionally, while insurance plans typically do not place a limit on a cancer patient’s doctor visits or tests, the plans will often restrict coverage for physical, speech, or occupational therapies.
What is rehabilitation for cancer patients?
Cancer rehabilitation focuses on the most common problems that patients experience after treatment. These include fatigue, pain, balance issues, muscle weakness, swelling in arms and legs, difficulty swallowing, numbness in the hands and feet, and any changes in cognitive condition. Seniors are more at risk for experiencing these problems, and a weakened condition can exacerbate other health issues.
The best approach is one that involves many professional specialties, essentially a rehabilitation team that supports the comprehensive rehabilitation plan. Initial assessments of impairments and disabilities are crucial data for establishing a baseline that professionals can then use to create a rehabilitation plan and goals that are most beneficial to the patient. A treatment plan initially emphasizes restoring independence with ADLs, mobility, cognition, and communication, and subsequently gets the individual back into the community and the workforce as required.
The following professionals typically play a role in the cancer rehab team:
Physicians – Consists of several specialties such as primary care physicians, surgeons, and radiation and medical oncologists.
Care coordinator/case manager – Assists in overall organization and management of the team. The initial evaluation of the patient is usually the responsibility of this professional. Care coordinators or case managers may be nurses, social workers, or professionals in rehab fields.
Oncology and/or rehabilitation nurse – Plays a large role in supporting the patient and the family throughout rehab. He or she is responsible for frequently assisting with the treatment regimen prescribed by the physical, occupational, or speech therapists. Nurses typically have the most contact with the patients and families and therefore are the most in tune with the family’s emotional and adjustment issues. Nurses are also responsible for skin care, bowel and bladder management, and patient and family education.
Social worker – Provides patients and families guidance about community resources, financial options, and lifestyle changes, and they encourage participation in treatment. Involvement varies depending on the patient’s situation and the medical institution.
Psychologist – Helps patients and families deal with the multitude of emotional and psychological issues related to having and dealing with cancer, its treatment, and any resulting disabilities.
Physical therapist – Evaluates the patient’s muscle strength, mobility, and joint range of motion (ROM). Physical therapists also prescribe therapeutic exercises to maintain or increase ROM, endurance, and mobility.
Occupational therapist – Evaluates and assists in increasing patient’s ability to perform tasks related to self care, including ADLs such as dressing, bathing, and meal preparation. Occupational therapists can evaluate home environments and recommend necessary modifications.
Dietitian – Works with patient and family to establish a proper and nutritious diet for ultimate recovery. A healthy diet is crucial in the patient’s ability to participate in a therapy program and is essential for radiation therapy and chemotherapy.
Speech therapist – Evaluates and treats communication insufficiencies, dysphagia, and cognitive dysfunction in cancer patients. Help to train patients to adapt to alternative means of speech and communication.
Vocational counselor – Helps patient adjust to how cancer and its treatment will affect employment. Performs an evaluation of the patient’s suitability for employment and for training, if necessary. Vocational counselors can serve as liaison between patients and their employers.
The healthcare team, patient, and family must develop rehabilitation goals that are realistic within the limitations of the patient’s illness, environment, and social support. Patients and family members are expected to be active participants in the rehabilitation process. Rehabilitation services must be available throughout all stages of illness, treatment, and recovery. Successful treatment plans are individualized to meet each patient’s unique and specific needs. For seniors, many times, that means the rehabilitation team may include other physicians who are addressing other health issues of the senior.
Communication among specialists on the team is a fundamental part of an effective plan. Because of the complexity, communication may not occur as quickly or smoothly as it should and can either delay or hinder the start of rehab all together. As the number of people involved on the team grows, the value of having an appointed leader on the rehab team becomes more essential to help coordinate the many kinds of rehab needed. The patient or the patient’s family may have to appoint one of the professionals as the designated leader.
Improvement to cancer rehab has arrived
“We don’t systematically screen for functional problems,” said Andrea Cheville, director of cancer programs in the department of physical medicine and rehabilitation at the Mayo Clinic. Therefore, medical professionals don’t often initially address cancer survivors’ issues that could benefit from rehabilitation. Opportunities for improvement are most significant when functional problems are attended to early on.
Research is just starting to document how much improvement potential exists when cancer patients are prescribed adequate rehabilitation.
Hospitals are also strengthening their efforts to provide patients with better rehabilitation. In fact, Johns Hopkins Medicine has even started a formal cancer rehab program.
“Although we did lots of cancer rehab in an informal way before, we’re offering more structured services and have arranged much more extensive training for staff,” said R. Samuel Mayer, Hopkins’s medical director of cancer rehabilitation. “Without exception, we’re seeing tremendous improvement among cancer patients who take advantage of these services.”
Four hospitals in Rhode Island have recently increased their offering of cancer rehabilitation services for patients. The Rehabilitation Institute of Chicago is introducing access to more formalized rehab for cancer survivors, and Allina, which operates 11 hospitals, is planning to do the same in Minnesota and Wisconsin.
Under guidance from therapists and specialist, patients can learn special exercises, practice walking or maintaining their balance, get deep massages that loosen scar tissue, and obtain devices that help with ordinary activities. That kind of help can mean the difference between surviving cancer and being able to return to work and live independently.
Seniors need to work closely with their assigned rehab team. Communicating often and honestly about the limitations they are experiencing will help create rehab that has the most advantages. Family members can act as advocates by sharing their observations and concerns with the rehab team.
Rehabilitation after cancer and its treatments is fundamental for improving physical, emotional, and psychological functions that were lost or compromised, and for creating the best possible long-term results and independence.
Here is the story of one patient’s cancer rehab experience: Vonda Jones, 41, was grateful that her oncologist referred her to a cancer rehab specialist after undergoing surgery, chemotherapy, and radiation for breast cancer. First, the rehabilitation specialists tackled the fatigue that would overcome Jones after going to the grocery store or taking a morning shower by helping her revise her schedule and prescribing low-impact exercises. Next, they helped her address range-of-motion problems that had developed during her treatment by having her lift a weighted broom handle repeatedly.
After getting advice about proper nutrition and additional therapies for balance issues, Jones didn’t feel so limited by side effects of her illness and treatments.
That was Jones’s goal. “I was so determined to not have this cancer be a major life change for me,” she said. “I’m a very active person at work, at church, and with my friends, and I wanted to have as much of a sense of normalcy as possible. And that’s what I’ve got.”
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