FAQs for Focus on Caring for Others
Originally aired on WUNC-TV, January 8, 2003, 10-11P.M.
Common Questions From Family Caregivers With
Lisa Gwyther, MSW, LCSW, Director
Duke Aging Center Family Support Program
Duke Employee Elder Care Consultation Service
Duke University Medical Center
1. How do I get my mom to see a doctor? She’s
just not herself, but she says she’s in a lot better shape
than most people her age….
She may resist seeing the doctor because she is afraid a new diagnosis
will mean a loss of valued independence or that her control of decision-making
will be limited without her consent. Listen to her physical complaints
during casual conversation – (digestion, back aches, no energy,
poor vision) and suggest that there are “new” treatment
options available that are worth exploring. Be confident that she
can feel better. Suggest a new doctor, perhaps a specialist in geriatrics,
if she distrusts her current physician. Offer to go with her. If
you are concerned about her memory, be sure to let the doctor know
about the memory problem in advance. Do NOT discuss your mother’s
loss of ability in front of her, and be sure not to talk ABOUT her
with the doctor as if she wasn’t there. Refer to these
tips on choosing a doctor or on choosing an Alzheimer's care team for assistance.
2. I’m alone in caring for mom, and
I’m a single working mother. How can I get my brothers and
sisters to help?
In many families, one person becomes “it” when it comes
to care for aging parents. Being a responsible concerned daughter
just means making sure that your mother’s needs are met. It
does not mean doing everything yourself. It may not be practical
to have each of your mother’s children spend equal time and
effort in helping her, but equity or some sharing of responsibility
is certainly a desirable goal. Fill a jar with single tasks required
for your mother’s care. Ask your siblings to take on those
tasks that they are able and willing to do. Don’t waste your
emotional energy trying to convince an unwilling brother or sister
to come forward. Perhaps your brother who lives away can make phone
calls or go on the web to find services for your mom? Can a sister
handle your mom’s health insurance, bills or taxes? Can your
brother take care of her car or the sale of her home to reduce the
number of things on your plate? Can your sister move in with your
mom when you are away on vacation? A brief family meeting with an
experienced counselor may help your family focus on “what’s
best for Mom”, and avoid re-hashing old relationship problems.
family caregiver support specialist for your county.
3. How can I convince my wife that I’m
not having an affair every time I leave the house or that our children
are not stealing from her? She was never like this before.
People with memory disorders often have delusions (false beliefs),
especially about spousal affairs and family stealing. These false
beliefs are not based on previous behavior, and it is NOT helpful
to argue or offer rational explanations about missing items, money
or infidelity. Memory disorders like Alzheimer’s are also
“thinking” disorders. People living with these disorders
can’t follow logical explanations and they forget what was
just said. All they know is something is missing or they are afraid
of being abandoned in a world that doesn’t make sense. The
way to respond is to acknowledge the fear, reassure and re-direct
the conversation to less threatening topics. “I know you’re
scared, but we’re in this together. I will stick to you like
glue. I’ll make sure your money is safe, but now it’s
time for our dessert…”
4. Do y’all know any Christian ladies
looking for a good home? My grandma lives alone, and she keeps firing
all the ladies we send in to help her.
There is a mistaken assumption that home care is provided by homeless
kind women looking for free room and board. Most live-in helpers
are hired through agencies or recruited, paid and supervised privately
by family members. Often, well-meaning families send in a paid companion
to stay with a memory-impaired older person who is having difficulty
living alone. People with memory disorders aren’t always aware
that they “need” help, and they frequently resist strangers
invading their privacy and offering unwanted help. She may continue
to “fire” any volunteers, paid private or agency helpers.
Consider an adult day program offering structured activities, meals
and social opportunities as a less-threatening alternative to a
stranger in the home. Call the national eldercare locator at (800)
677-1116 for referral to local aging services, refer to the
National Adult Day Services Association for national links
to adult day programs, or use your own contacts to find the right
person to help – e.g. church newsletter ads, or local family
caregiver information nights, seminars or support groups (good source
for local consumer information on available help).
5. Are there any volunteer or sliding scale
home care services? We can’t afford much.
Volunteers generally offer limited companion or sitting services,
but little hands-on care, help with housework or transportation.
Aging services programs generally have some cost-sharing option.
Many families, however, find help privately, at less cost than agency-trained,
supervised and licensed helpers. For an overview of local services
and volunteer groups, call the eldercare locator at (800) 677-1116.
For an overview of service eligibility and benefits for a specific
disabled adult, try Benefits CheckUp
for prescription assistance program eligibility.
6. Is it true what I read about husbands
dying while caring for their sick wives? I’m afraid I’m
going to lose both my parents to my mother’s illness.
Research findings suggest that the strain of caring for a memory-impaired
husband or wife increases one’s risk of depression, worsening
of health problems, less time for oneself and even premature death.
However, few committed family members are willing to “give
up” responsibility or care for a beloved spouse or parent.
What the primary caregiver needs is support and help in honoring
7. Where can my parents live if I move them
near me from up north? Their neighborhood is changing, and their
friends say they aren’t making it on their own anymore. I
read that moves cause old people to die early.
Moves are upsetting and disorienting at any age, but particularly
for frail, disabled or memory-impaired older adults. If the move
offers more options for help and support, closer or more meaningful
connections with valued family members or greater quality of life,
then it is worth coping with the relocation trauma. Housing and
housing with services options vary with location. It helps to talk
with an aging services professional. Ask for the Information and
Assistance person at your county office on aging. A good review
of housing and long-term care options in NC can be found at Full Circle of Care
or North Carolina Division of Aging and Adult Services.
8. What does the assisted living director
mean by “they can’t meet my mom’s needs?!”
She’s only been there two weeks, and they want me to find
someplace else for her to live!
Non-nursing home residential care is not as strictly regulated
as nursing home care. Services vary and even the facilities are
called by a variety of confusing names – assisted living,
adult care home, rest home etc. If a new resident is disoriented,
confused or behaving strangely in response to a change in environment,
the facility may face complaints from other residents or staff about
your mother’s unreasonable demands of them. Perhaps your mother
was forced to move there quickly in response to events, without
fully understanding what services were offered. Assisted living
facilities may charge extra for help that is routinely offered in
traditional nursing home care. Unfortunately, this scenario is quite
common. Take your time to explore all options, including bringing
in private help for your mother in the assisted living setting.
Check out your options with a
long-term care ombudsman.
Also, check the NC Friends of Residents in Long-Term Care
9. Do hospitals make old people worse? My
aunt is so demanding, helpless and ungrateful since she came home
to live with my mom after her fall.
Hospitalization of a vulnerable older adult is frequently followed
by a decline in function or independence in routine self care, particularly
if she experienced delirium or a period of acute confusion in the
hospital. In general, people don’t exaggerate dependency –
the need for help is real, but too much “helping” can
be counter-productive. We know that being sick, vulnerable, in pain
or recently disabled does not necessarily mean the person will become
nice, grateful or resourceful. Depression and anxiety are also common
following acute illness or injury, and depression limits a person’s
energy for self-care and her ability to concentrate on rehabilitation
goals. Ask her doctor for a referral to home health for a nursing
evaluation of her current needs and how best to meet them.
Refer to the Home Health Care Compare web site
for information on agencies by state and county.
10. How can we get Dad to go to a support
group? He says he doesn’t need a bunch of meddling women telling
him what to do - God will show him the way.
Although a strong faith or belief system helps many people cope
with adversity, that’s not what a support group offers. First,
your dad may be more receptive to a seminar or information session
on your mother’s illness or care needs. Some disease groups,
like the Alzheimer’s Association
and Alzheimer's NC offer classes, seminars or workshops for families with no commitment
to attend an ongoing group. The couple featured in this public TV
special joined the Bryan Alzheimer’s Disease Research Center’s
Patient/Caregiver Group which offers an opportunity to continue
to participate in life as a couple, while participants have a chance
to share good consumer information on –
local sources of help Some
people form their own support groups while waiting for treatment
or participating in clinical trials of experimental medications.
Some people turn to familiar groups for support, like Al-Anon, Sunday
School Classes or their AARP chapter. Be sure your dad understands
that support groups are not therapy or encounter groups –
he can keep secrets, just listen, and there is no commitment to
attend so many sessions. For some people, it is just comforting
knowing that groups are out there “when they are ready.”
11. How can I get Power of Attorney for my
mom away from my sister? She’s taking all Mom’s money
and Mom’s bills aren’t getting paid.
It’s often surprising how quickly family conflict escalates
around elder care. Individual family members have different perspectives
on what and how much help is appropriate. If your mother is confused
or memory-impaired, she may not be aware of her financial situation.
Financial exploitation is a real risk, and the perpetrators are
not necessarily limited to family members. Your mother gave her
power of attorney to your sister, and only she can take it away.
If you believe that your mother is at risk of financial exploitation
or neglect, you should seek legal assistance from an attorney knowledgeable
about mental health law or elder care. Check with your county aging
information and assistance specialist or try this NC elder law clinic
web site—NC elder law clinic.
12. Aren’t churches supposed to help
their members in need? My mom has tended to the sick of the church
all her life and now no one from the church offers to help her.
People in NC coping with illness or disability may turn first to
familiar church communities. Many people express surprise and disappointment
when the congregation or church leaders don’t respond as expected.
This is particularly true when a church member has a long, progressive
or chronic illness rather than an acute hospitalization, short recovery
period or brief terminal illness. Some families are successful using
email or letters to key church or Sunday School friends, alerting
them to an individual or couple’s situation and needs. This
indirect strategy is much preferred by older church members who
just expect their church community to respond without being asked.
Also, the disabled older person and family caregiver may be afraid
of rejection if they ask for help. In NC, some churches are forming
“care teams” of up to 20 members who all agree to help
a family in specific ways during a serious or terminal illness.
For more information, see the Carolinas Center for Hospice and End of Life Care.
13. Do you have a list of nurses or people
who sit with older people?
Most older people don’t require the skills of an RN or licensed
practical nurse, and most families are unable to afford such care.
Some county aging services keep lists of people who will provide
companion services while the primary family caregiver has a break
or “respite” from caring for a relative who cannot be
left alone. There are also home care agencies and home health agencies
offering staff with varying qualifications depending on the need.
The advantage of agency services is that their staff have security
checks, training, supervision and they can often provide a replacement
if a given staff member is out.
Locate your county aging information specialist,
or call the national eldercare locator at (800) 677-1116. You may also
try the yellow pages under aging, health department, home care or
county adult social services department.
14. How do you get older people not to spend
so much time visiting the nursing home? Mom finally got Dad into
a nursing home, and she’s still with him every minute. The
nursing home doesn’t like her hanging around.
Family care and family responsibility do not end at the door of
the nursing home. In general, regular family visitors enhance the
quality of personalized care. But your mom may need to be there
to meet her own needs to stay connected to your dad. Open visiting
is her right as his wife, unless she is unintentionally harming
him or putting him at risk. Perhaps she would feel less compelled
to visit if she knew other friends or family could be counted on
to visit in her absence. She may feel like she is in social limbo,
feeling uncomfortable with old couple friends and groups. Encourage
the facility staff to introduce your mother to other regular visitors.
Many family visitors develop friendships and offer to visit each
other’s family members when one regular visitor is away. Focus
your efforts on supporting your mother and reassuring her that you
and others will not abandon your dad or her. See The National Consumer Voice for Quality Long-Term Care
15. Isn’t there something on the web
about how to take care of sick people at home? I don’t have
time for workshops, seminars or support groups.
See our Links / Resources page.
Try these sites for care tips and links to email discussion groups,
bulletin boards and chat rooms:
www.alz.org and www.alznc.org
anywhere in US
Elder Care Online
Family Caregiver Alliance
Group purchasing program for home care supplies
prescription drug assistance and compare nursing homes
North Carolina-specific care
National Family Caregiver Support Program
16. Who decides about feeding tubes? The
hospital wants to send my dad back to the nursing home with a feeding
tube, but I’m not sure my dad would want it.
There are no cookie-cutter approaches to decision-making about
care at the end of life. You need to know why the tube has been
suggested, and for how long it might be used. Are there alternative
feeding strategies? What has your father said or written in an advanced
directive that would suggest his wishes? Are you his health care
power-of-attorney? Perhaps a consultation from the local hospice
agency would be helpful to you and the nursing home? Refer to Carolinas Hospice and End of Life Care.
17. How do you get a really stubborn man
to stop driving? He gets lost and has had some fender benders, but
he says he’s a better driver than any doctor who tells him
not to drive.
Ask families of people who have had to stop driving, and you will
find as many “right” ways to do it as there are families.
If he has a memory problem, his last memory is that he is an excellent
driver and you will not convince him otherwise. A family member
can call (anonymously) the DMV and suggest that your dad be re-tested,
but it is unlikely he will agree, show up, abide by their decision,
and he may even pass the test! Taking his license away won’t
stop him from driving. Some people respond to a doctor’s direction
to stop driving “temporarily, or while you are having some
tests or treatment”, and others stop driving if someone in
authority tells them not to drive – a sheriff, minister, boss,
or trusted family member. Sometimes it is necessary to be indirect
– replace the key with one that doesn’t work, remove
the distributor cap, take the car “in for repairs”,
move the car or even sell it. Join your dad by telling him, “I
don’t like this any better than you do, but we’re in
this together and I’ll see you through.” Make certain
he has adequate transportation to reduce the risk of isolation and
frustration. But don’t cave in – he and his family could
be held liable for accidents.
18. Do you have someone who can help my husband
and kids understand why it takes so much time for me to care for
my mom? I’m trying as hard as I can, but I’m not satisfying
anybody in this family.
As we age, we take on a larger package of responsibilities and
commitments to a larger number of family members. It is impossible
for you to give equal time to all your family members. It is also
true that people with chronic illnesses often get worse and need
more help over time. But even adequate or “enough” help
won’t guarantee that anyone is “satisfied.” It’s
much easier to suggest solutions than to live those solutions. Try
a caregiver support group, seminar on self care, a book or go on-line
and talk with other family caregivers. In NC, each area agency on
aging has a family caregiver support program specialist.
19. Why am I so sad when my momma’s
still here with me? My husband says to save the crying for Momma’s
funeral after she’s really gone.
Many chronic illnesses are progressive – they get worse slowly
over time. Although you may be familiar with the grief following
death of a loved family member, no one is prepared for the grief
that accompanies loss of the person as you knew him/her while they
are still alive. This anticipatory grief, bereavement and loss is
painful, often prolonged and generally not acknowledged by close
friends and family. It is different from what you will feel when
she is actually gone. Talk to someone in a support group, a trusted
clergy person, counselor or therapist. It may be a common reaction,
but grief accompanying anticipated loss does respond to understanding