terminally ill senior

Caregiver Roles When Caring for a Terminally Ill Senior

Any one of us could find ourselves needing to care for a terminally ill parent or close relative at some point in our lives. Regardless of your family connection, as the caregiver of an elderly and very sick loved one, you will fill many roles that are important to their dignity and quality of life.

we will cover in this article

Terminally Ill elderly

What Roles are important to improve the life of an Ill Senior

  1. Promoter of well-being
  2. Helper
  3. Manager of rapid changes

Here’s a look at what each role entails.

Promoter of Well-Being:

Initially, you may be the person who promotes your loved ones’ overall well-being [i] as they come to terms with being terminally ill. Their state of well-being often impacts how they view their lives at this stage and how well they accept needing a primary caregiver.

The health of a senior with a terminal illness will be directly affected by their sense of comfort and happiness. An attentive and nurturing caregiver contributes greatly to a positive outlook for a senior that needs the help of a caregiver.

Actively providing all that is possible for their comfort and happiness will forge a necessary bond between the caregiver and the terminally ill senior. In turn, that bond helps the caregiver to fulfill other important roles.

Helper:

In the role of helper, [ii] an effective primary caregiver develops a patient-servant attitude. Performing small duties may seem insignificant, but they’re incredibly meaningful for seniors who can no longer do things for themselves.

Be a helper by:

  • Bringing in the newspaper
  • Preparing meals
  • Performing light housekeeping duties
  • Assisting with personal care
  • Caring for pets and plants
  • Offering friendship and companionship
  • Any other things the senior needs within reason

Manager of Rapid Changes:

An important aspect of promoting a terminally ill senior’s well-being is managing the rapid changes that sometimes accompany terminal illness. [iii] People with terminal illnesses can quickly transition from relative independence to complete reliance on a caregiver.

These changes are difficult to accept for someone who is accustomed to self-reliance. Caregivers can ease the transition by educating their loved ones that these changes are to be expected and working through making necessary adaptations for their care together.

Terminally Ill Elderly

As loved ones progress through the stages of terminal illness, caregivers fill additional and slightly more difficult roles including:

  • Organizer of Care
  • Moral and Ethical Decision-Maker

Organizer of Care:

When caring for a terminally ill senior, you will be the primary organizer of the care they need. This can range from meal preparation to medication management to protector and advocate. As their needs change, your flexibility and timely responses will be crucial.

Medical care, palliative care, and caring for the home can place stringent demands on the family, especially the caregiver.

Moral and Ethical Decision Maker:

Perhaps the most difficult role of the primary caregiver is that of moral and ethical decision maker. [iv] Too often, important questions regarding end-of-life scenarios are left unanswered by the terminally ill loved one, and the family is forced to make decisions they would rather not make themselves.

At times, the loved one in question cannot be consulted to ascertain their wishes. In those times, the wishes of family and the advice of trained palliative care specialists are invaluable.

Taking Care of Family Members at Home

Hospice services [v] make it possible for terminally ill seniors to live out their final days in the comfort of their own homes or the homes of close family members. Physicians usually recommend hospice services when a person is living the last six months of their lives or when the goal switches from curative care to palliative care.

Palliative care means helping to relieve symptoms of a serious illness. The goals of hospice and palliative care strive for improvement in the quality of life for the patient and family members.

During the last six months of life, it helps terminally ill people and their families to change their emphasis on getting well to providing a comfortable and pain-free time for the ill person. Hospice workers help family members to focus on their loved ones social and emotional needs during this time so that they can create special memories together in the final days of life.

As much as a family member wants to be a caregiver, providing care for a terminally ill loved one can create a financial hardship for some family members. Various organizations have programs for family members to be paid as caregivers for their loved ones. [vi]

Look for paid family caregiver programs at the following organizations:

  • Medicaid
  • Veteran’s Administration
  • Long-Term Care Policies
  • Formal contract with family member

Supporting Family Caregivers in Providing Care

Family caregivers often provide caregiving services for years. The demands of caregiving sometimes place heavy social, emotional, and physical burdens on caregivers making them susceptible to fatigue and burnout.

Symptoms of caregiver burnout [vii] include:

  • Depression
  • Withdrawal from social situations
  • Irritability
  • Feelings of hopelessness and helplessness
  • Changes in weight or appetite
  • Sleeplessness
  • Chronic physical illness
  • Exhaustion
  • Feelings of wanting to hurt themselves or those they care for

The heavy toll of personal caregiving means that regular caregivers need a range of support. Studies have shown the following benefits for caregivers who receive ongoing and adequate support:

  • Delays or prevents nursing home placement
  • Defers placement in facilities for people with dementia [viii]

One of the best ways that others can support family members in providing care is to provide respite care. Family members can provide respite care for a few hours a day, a few days a week, or on a weekend.

It’s important to remember that regular caregivers need time off to take care of their own health and their families. When caregiving continues for many years, caregivers also need an elongated break like a restful vacation.

If family members aren’t able to step in and take on some of the responsibilities for caregiving, they might help to find other ways to support the primary caregiver such as offering to pay for substitute care or finding day facilities or other types of services that let the caregiver take a break.

Family members that don’t provide direct caregiving services should encourage caregivers to accept help for self-care. [ix]

Some suggestions for support include:

  • Support groups
  • Caregiver and family counseling
  • Home modifications
  • Assistive devices

Each community offers different services. Look for assistance through government agencies, service organizations, faith-based organizations, and nonprofits.

Do you think an in-home elderly care specialist might be right for you? Call or contact Caring People Inc. to schedule a free in-home consultation. Qualified homecare specialists will meet with you, assess your unique situation, and match your needs to the right services.

Sources:

[i] http://www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx

[ii] https://www.caregiving.com/2017/05/caregiving-task-list/

[iii] http://healthywa.wa.gov.au/Articles/U_Z/Understanding-the-dying-process

[iv] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947968/

[v] https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/hospice-care/art-20048050

[vi] https://www.aarp.org/caregiving/financial-legal/info-2017/you-can-get-paid-as-a-family-caregiver.html

[vii] https://www.webmd.com/women/caregiver-recognizing-burnout
[viii] https://academic.oup.com/gerontologist/article/50/5/623/560315
[ix] http://www.caregiverslibrary.org/caregivers-resources/grp-caring-for-yourself/hsgrp-support-systems/support-for-the-family-caregiver-article.aspx