Our Bodies, Ourselves (123 page)
Read Our Bodies, Ourselves Online
Authors: Boston Women's Health Book Collective
Recommended Reading:
For more on this topic, see
End-of-Life Choices: Who Decides?
a report released in 2010 by OWL, the Voice of Midlife and Older Women: owl-national.org/Mothers_Day_Reports.html (capitalization is needed).
SALLY AND BETH
When Sally Gabb and her partner of twenty years, Beth Grossi, wed in 2005 in Massachusetts, they expected to be together, finally married, for many more years.
In September 2009, Sally, sixty-six, felt her body undergoing changes. “Bladder control,” she said to herself. “I'm just getting to be an old lady.” She was later referred to a urologist, who took a urine sample and called her in for a ureteroscopy.
“The first one to mention the C-word,” Sally recalls, “was my urologist, who said, âYou definitely have a growth that is pressing against your bladder, and it's probably cancer.'”
Sally was scheduled for a biopsy that December. The same month, two large lumps appeared on her neck, requiring a second biopsy. Both came back malignant. Sally, who had no other health conditions, learned she had Stage IV uterine cancer.
“It's very scary. I think in some ways the person who you're with has to deal with the possibility of being left behind,” she says, thinking back to her initial conversation with Beth about the diagnosis. “And whereas the person with the diagnosisâyou're kind of going off into the unknown. So it's different unknowns.”
Beth, too, feels the weight of the unknown. Sally's illness serves as a reminder that cancer, which took Beth's brother's life, can happen to anyone.
“It has made me aware that we weren't as Teflon as youth leads you to believe,” says Beth. “It has put a lot of fear and reality inside me, and makes me realize that we have to live every moment and not take things for granted.” Even though their home state of Rhode Island does not recognize their marriage, Sally's health care providers have treated them as spouses. Beth stays with Sally in doctors' offices and emergency rooms. If there's a meeting with Sally's oncologist, he always asks Beth to attend.
“There's never a question,” Sally says, emphasizing the support she feels that she and Beth have had through her treatment.
But because the state treats them as separate individuals, Sally has taken care of property and financial matters. She and Beth own their house together, so to keep Beth from having to go through probate court, Sally placed the property in a joint trust. She also signed a living will.
“Starting to deal with that stuff is really odd,” she says, “but after a while it normalizes, and you start thinking practically. It isn't something that upsets me anymore. I just want to make sure things are taken care of for her.”
The couple has avoided talking about assisted living facilities because Sally has remained healthy through treatments. Sally wants to remain at home, but if she experiences a widespread recurrence and Beth is unable to care for her, they would try to find a facility where both women could live.
“If we decide to try to look for something in Massachusetts, could we even afford it?” Sally asks, referring to the state that would recognize their marriage.
“Beth would do anything she could to keep me in a place where she could be with me all the time.”
Sally and Beth have been talking more about some of Sally's other wishes.
“I tell her I want her to have a wild party, something to celebrate my life,” says Sally.
“As for aging,” Beth says, “I realize how lucky you are to get old.”
We rushed my husband to the hospital with a stroke, and it was a medical miracle. Now I am not so sure it was a blessing. He is not always rational and cannot be left alone. . . . I had to give up my job. Financially, we are in terrible shape, but disaster will strike when he dies. I am 57 and won't be eligible for anything. I can't see my way out
.
THE NEEDS OF PAID CAREGIVERS
Women make up the vast majority of workers in long-term care occupations such as nurses, nurses' aides, personal care attendants, and home care workersâand are grossly underpaid for their services. Many of these jobs are held by women of color and recent immigrants. These jobs require a great deal of standing and lifting, and workers are more likely to develop chronic conditions such as leg and back pain. Yet these same workers are also more likely to lack adequate health care insurance to pay for their own care.
All women concerned with caregivingâwhether as family caregivers, as paid workers, or as care recipientsâmust join together to affirm the value of this work and advocate for decent wages and benefits.
One of a caregiver's greatest challenges is to balance self-care with her multiple responsibilities. The need for support for family caregivers cannot be underestimated.
People often think of caregivers as looking after spouses, forgetting that many of us are single. The essayist Margaret Nelson writes with great compassion and insight about taking on the care and end-of-life decisions of a friend, called “Anna,” who was diagnosed with what turned out to be terminal cancer. Anna was single, lived alone, and had no close family. She asked Nelson and another friend to share the role of exercising a durable power of attorney.
A few weeks after Anna's death, Nelson ran into a colleague, who wanted to acknowledge Anna's death with a card of sympathy:
Did I know to whom it should be sent? When I responded that he could send it to me, he missed my meaning, assuming that I meant that I would forward it to her family. When I tried to explain that I would keep the card myself, he again misunderstood
.
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With increased numbers of women in the workforce, fewer siblings to share extended years of caregiving, and increased geographic distance between family members, it is often difficult for primary caretakers to get help. Yet we cannot do it alone.
Resources exist to help caregivers, but waiting lists can delay services for low-income families. The National Family Caregiver Support Program, the first universal federal program created in 2001, provides information, counseling, respite care, and other services to all family caregivers. For information in your area, visit
www.eldercare.gov
or call the Eldercare Locator at 1-800-677-1116. Other resources include:
Family Caregiver Alliance
(caregiver.org) offers information, services, and advocacy for caregivers.
National Alliance for Caregiving
(caregiving.org) is a nonprofit coalition of national organizations focused on family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
Rosalynn Carter Institute for Caregiving
(ro salynncarter.org) establishes local, state, and national partnerships committed to building quality long-term home and community-based services. The website offers a good list of caregiver resources.
Share the Care
(sharethecare.org) offers information about a creative model in which neighbors help family members with caregiving.
Many of us accept and even expect that others will depend on us, yet many of us fear becoming dependent ourselves. We need to learn how to accept help without feeling diminished, and others need to learn to provide help as our relationships change and become more dependent. Chronic illness or a new disability may be a blow to our pride and habits of self-sufficiency.
ELDER ABUSE AND NEGLECT
Older women and individuals who are dependent on others for care and protection are at increased risk of abuse, neglect, or abandonment. The overwhelming majority of abuse and neglect cases occur in home settings, and in more than half of all reported cases, a family member is identified as the abuser. Many elder abuse cases involve spouse/partner violence.
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Financial exploitationâthe illegal or improper use of a person's funds, property, or resourcesâis considered abuse and is a growing concern. According to the U.S. Administration on Aging,
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an estimated $2.6 billion or more is lost annually because of elder financial abuse and exploitation.
More specific data on elder abuse and neglect are woefully inadequate; state statistics vary widely, as there is no uniform reporting system and comprehensive national data are not collected. The National Institute on Aging funded a series of grants starting in 2003 to develop survey methodologies for abuse and neglect surveillance. A new indicator is being included in the Healthy People 2020 initiative (healthypeople.gov), increasing the number of states that collect and publicly report incidents of elder maltreatment. A national study of elder abuse and neglect would increase public awareness of the problem.
Though one sign does not necessarily indicate abuse, the Administration on
Aging lists these possible warning signs
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that there could be a problem:
⢠Bruises, pressure marks, broken bones, abrasions, and burns may be an indication of physical abuse, neglect, or mistreatment.
⢠Unexplained withdrawal from normal activities, a sudden change in alertness, or unusual depression may be indicators of emotional abuse.
⢠Bruises around the breasts or genital area can occur from sexual abuse.
⢠Sudden changes in financial situations may be the result of exploitation.
⢠Bedsores, unattended medical needs, poor hygiene, and unusual weight loss are indicators of possible neglect.
⢠Behavior such as belittling, threats, and other uses of power and control by spouses or partners are indicators of verbal or emotional abuse.
⢠Strained or tense relationships or frequent arguments between a caregiver and the care recipient are also potential signs.
Sexual assault and nonconsensual sexual contactâincluding unwanted touching, suggestive talk, forced nudity, and forced exposure to sexually explicit contentâare possible at any age. Service providers may overlook signs of assault, and we may feel embarrassed to discuss it. This fear can contribute to the underreporting of sexual assault among older women.
We may encounter particular obstacles to leaving or getting help including wanting to keep the family together. It may be difficult to leave because the abuser depends on you financially or on your care. Many of us face poverty or diminished income as we age; we may lack the financial resources or affordable and appropriate housing we need in order to leave. Complex health care needs, mobility issues, or disabilities may combine with a lack of accessible community services to make living on our own difficult or impossible. Abusers have been known to damage assistive devices or prevent medical visits, further limiting mobility and access to help.
If we try to tell family or friends what is happening, the abuser may try to discredit us and persuade others that he or she is looking out for our well-being. Some caregivers (family or others), claiming to be unraveled by the stress of caregiving, use stress as an excuse to continue abusive behavior without intervention by social services or law enforcement.
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If you experience or suspect elder abuse, neglect, or exploitation, call 911 or contact the national Eldercare Locator at 1-800-677-1116. The National Center on Elder Abuse (ncea.aoa.gov) offers a list of state reporting numbers along with information on all forms of elder abuse, including domestic violence. Other resources include the National Committee for the Prevention of Elder Abuse (preventelderabuse.org) and National Clearinghouse on Abuse in Later Life (ncall.us).
This may be our first time accepting assistance, and doing so without resentment or loss of pride may be challenging. If helpers provide choices when possible, it may be easier to accept that help graciously.
As a widow at age 80, I had been living alone, and it was becoming harder for me to get around. A lot of my friends had died. . . . The solution for me was to relocate to a long-term care community close to my daughter. This gave me independence with family support nearby. My move has enabled my daughter and me to renew our relationship. We have built up a friendship based on a deep understanding of each other. I truly treasure this in my old age
.
Another woman remarks:
Whether we have our own grandchildren or not, being in connection with babies, children of relatives, friends, neighbors, or clients puts life in perspective. I think about my grandson's vulnerability and how his overwhelming needs will be met. Wouldn't it be nice if we lived in a world where dependency in older adults would be met with such care and love?
From the bottom of my heart: Life gets greater and more surprising after 40, 50, 60, and, yes, 70
.
âGloria Steinem (at age seventy-six)
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The recipe for good health reaches beyond the basics of physical and emotional health. It includes having a sense of purpose and an enthusiasm for life. The strengths we develop by navigating the challenges of adulthood provide the foundation for successful living with meaning and fulfillment during our later years.
Getting old can be wonderful if you're not imposed on by other people's rules about how you should be when you're old. I consciously break as many as I can, because then I'm breaking through oppression
.
We deal with less time left, we clarify our priorities, and we figure out what really matters to us. As we develop a sense of purpose, we may find we have the freedom to open up to more creative expression than we had time for earlier in our lives.
Recommended Reading and Resources:
As you make your transitions, a book you might find useful is
Project Renewment: The First Retirement Model for Career Women
by Bernice Bratter and Helen Dennis. The first part of the book addresses the challenges women may face when looking to retire. The second part teaches readers how to start and maintain their own Project Renewment group for support and connections. See projectrenewment.com for more information. Other resources include:
The Transition Network
(thetransition network.org) is a community of women over fifty who join forces as they navigate the transition from one career to another or whatever is next.
WomanSage
(womansage.org) provides support for women in midlife through educational programs and social philanthropy.