What you need to know when you don’t know what you need!

Having a family member move into a different stage in life that requires care can be a confusing and complicated process

Having a family member move into a different stage in life that requires care can be a confusing and complicated process.  How do you navigate the complex and overwhelming amount of information available and find out what is right for you? This can be one of the most stressful stages in the journey when care needs are changing. You are not alone!

When I experienced this with my own family I was numbed by how little I really knew, even though I was a practicing Registered Nurse at the time. Thankfully, elder care concerns are now much more important to many of us.  And it shows. The internet is full of countless websites providing free information to help you determine your course of action with realistic tips from people just like you all the way to experts on eldercare. Your head may be spinning and you may need to make a decision quickly, but first you need to know where you are!

Many people have an understandable desire to avoid this topic or try to paint a more optimistic picture about what they are experiencing based on misperceptions about the end result.  Many of us can empathize with the desire to avoid thinking about our needs until we or someone in our family is in crisis, but to help you avoid this pitfall I suggest that you begin by taking a moment to take care of yourself. As the airline flight attendant always says, “please place the oxygen mask on yourself first and then help
your…” you get the point!

Second, take a deep breath and find your sense of self-compassion and humor!
I found that these two things can go a long way in the process of deciding what is right or wrong for you and what is just plain absurd! The more objectivity you can bring to the situation the easier you will find it to enter into critical thinking instead of being pushed into the place of making simple reactive choices. Since these are major decisions that will affect the quality of your life, we want to make sure you are engaged with the process
and have the ability to choose wisely.

Now spend some time writing down what the problems are and what you would like to see happen. Keep that image! You may get bombarded by the many different labels and descriptions of different services and truth may be, you aren’t exactly clear what the difference between them is. I found it helpful to educate myself on the specialized language of elder care.

There are many options to consider as you explore community based options and/or long term care facilities. Do not be afraid of asking “stupid” questions. Remember that the only stupid question is the one you didn’t ask!

Article Provided by:
HomeWell Senior Care

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Care for Terminally Ill Individuals – What is Hospice?

Hospice programs are available to help terminally ill individuals live their remaining days with dignity. These programs can assist the family (or other designated caregiver) in making the patient as comfortable as possible, and assistance is available around the clock, seven days a week.

Hospice is primarily a concept of care, not a specific place of care. Hospice care usually is provided in the patient’s home. It also can be made available at a special hospice residence. Hospice is a combination of services designed to address not only the physical needs of patients, but also the psychosocial needs of patients, their loved ones.

Hospice combines pain control, symptom management and emotional and spiritual support. Seniors and their families participate fully in the health care provided. The hospice team develops a care plan to address each patient’s individual needs. The hospice care team usually includes:

  • The terminally ill patient and his or her family caregiver(s)
  • Doctor
  • Nurses
  • Home health aides
  • Clergy or other spiritual counselors (e.g., minister, priest, rabbi)
  • Social workers
  • Volunteers (if needed, and trained to perform specific tasks)
  • Occupational, physical, and/or speech therapists (if needed)

When is Hospice Care Appropriate?

As with many end-of-life decisions, the choice to enroll in a hospice care program is a deeply personal thing. It depends almost as much on the patient’s philosophy of living and spiritual beliefs as it does on his or her physical condition and the concerns of family members. The following case study shows how one patient decided that hospice care was what she wanted and why it was right for her:

A Case Study of Hospice Care

Lynda was 57 years old when she was diagnosed with liver cancer. In spite of the best medical treatment her doctors could provide, her cancer proved incurable. Although the prospect of dying frightened her, Lynda wanted to receive professional assistance to prepare herself and her family for her death.

She realized that she wanted to be cared for at home by her sister, Sara. The local hospice service made the arrangements so that this would be possible. Hospice staff made sure that Lynda’s family would have the equipment they needed, and trained Sara in how to administer medications to relieve Lynda’s pain.

The hospice program also sent a registered nurse to the house to oversee Lynda’s care, and the nurse consulted with a doctor to make sure Lynda was as comfortable as she could be during her final weeks. In addition, the hospice service sent a personal care attendant to bathe Lynda twice a week, and a social worker and a clergyman to provide spiritual and grief counseling for Lynda and Sara.

Lynda lived the last six weeks of her life at home before she passed away surrounded by Sara and the rest of her family.

  • Empowering adults as they age with reliable information and access to the care they need
  • Enabling individuals who are at high risk of nursing home placement to remain at home
  • Building disease prevention into community living through the use of low-cost, evidence based programs

How Can I Pay for Hospice Care?

Medicare, private health insurance, and Medicaid (in 43 states) cover hospice care for patients who meet eligibility criteria. Private insurance and veterans’ benefits also may cover hospice care under certain conditions. In addition, some hospice programs offer health care services on a sliding fee scale basis for patients with limited income and resources. To get help with your Medicare questions, call 1-800-MEDICARE (1-800-633-4227, TTY/TDD: 1-877-486-2048 for the speech and hearing impaired) or look on the Internet at www.medicare.gov. Additional information about how to pay for hospice care can be found at the Public Policy Institute of the AARP.

Want to Learn More About Hospice Care? Visit these websites:

Hospice Foundation of America

Hospice Foundation

The Hospice Association of America

Hospice Net

The Eldercare Locator

To find out more about hospice programs where you live, you can contact your local aging information and assistance provider or area agency on aging (AAA). The Eldercare Locator, a public service of the Administration on Aging at 1-800-677-1116 can help connect you to these agencies.

Other Family Counseling and Support Services

Seniors and family caregivers facing end-of-life decisions often must deal with very difficult issues of grief and loss-both before and after their loved one dies. In addition, they may have practical concerns about their legal rights and how to pay the bills now that an important member of the household is gone.

Americans for Better Care of the Dying

Family Caregiver Alliance

Source: Administration on Aging, Build the Future of Long Term Care, www.AoA.gov
Provided by: The Staff at www.RetirementConnection.com
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