Help for the Caregiver
It’s
a typical scenario: You start by caring for your parent, spouse, or sibling an
hour here, an hour there. But once your loved one’s Alzheimer’s disease has
progressed beyond the initial stages, that’s no longer
possible. Pretty soon, you are devoting full-time to watching over your
patient. Presto — you’ve become an
around-the-clock caregiver!
Most
often, the progress of Alzheimer’s disease requires significant changes to the
family’s schedule and commitments. A caregiver trying to do most of the work
alone will soon find it an impossible task. Even with several caregivers taking
turns, it’s not uncommon for everyone to feel frustrated, depressed, and
despairing. Generally, when these feelings get out of hand, it means that something
ought to be done to make care a more manageable process for all concerned.
The
emotional stress of watching your loved one go downhill cannot be overestimated.
Do not be ashamed or embarrassed to seek relief. Even the physical demands can
be exhausting. Lifting, bathing, dressing, toileting, and feeding your loved
one must be performed carefully in order to prevent injuries to both your loved
one and yourself. However, when you get pressed for time, trying to care for
your loved one and your household, being careful could easily become the
last thing on
your mind.
Sooner or later, caregivers realize they need help. But where do
you look?
To
get started, it is suggested that you make contact with a social worker
connected to your local hospital, county or state agency on aging, or local
religious or charitable organizations. You can find these in your yellow pages
under “social services” or “human services.” Another route to pursue is your
local department of health. These agencies can help you with financial advice,
assistance with tax or Medicare forms, locating special-needs housing, and
services that provide transportation and meals.
What are the sources of information about available services?
The
Eldercare Locator is a nation-wide service to help families and friends
find information about community services for older people. The Eldercare
Locator gives you access to an extensive network of organizations serving
older people at state and local community levels. The Eldercare Locator
can connect you to information sources for a variety of services including:
• home delivered meals
• transportation
• legal assistance
• housing options
• recreation and social
activities
• adult day care
• senior center
programs
• home health services
• elder abuse prevention
• nursing home
ombudsman
The
Eldercare Locator is a resource to help you find these community
services for seniors through a national toll-free number (1-800-677-1116).
Occasional Needs
If
you already spend most of your time at home, you may wish to have someone
step-in so you can run errands — or simply take a much-needed rest. In many
areas, volunteers organized by religious, local government, or community groups
will step-in for a few hours. Adult day-care programs offering personal care,
meals, recreational activities, and some therapies should be available for
short and long periods. Not all of these are expensive — often churches,
synagogues, YMCAs, and hospitals run such programs on a sliding scale, based on
your ability to pay. You may even find one that’s free!
Part- and Full-Time Help
If
you need more than occasional help, you may want to look into hiring a health
care aide to come to your home on a regular basis. These aides can bathe,
dress, and feed the patient, administer medications, and even shop, cook, and
do light housework.
Aides
can be hired directly or through an agency. The advantages of hiring one
yourself are that you have greater control over who
you choose — you do the interviewing, screening, and you pay them
directly (no add-on fee from an agency). The biggest disadvantage is that, if
the person doesn’t work out or fails to show up one day, you’re stuck with no
help. Home health agencies spare you the search and much of
the hassle. They’re also equipped to send you a replacement aide immediately.
In
the later stages of the patient’s Alzheimer’s, you might consider a hospice
program, which can take place in your home or in a nursing facility. Hospice
programs are designed primarily to manage (ease) the patient’s pain and to help
patient and caregiver cope with impending death. Home hospice care can be given
by a visiting nurse, social worker, home health aide, clergy, and volunteers.
Durable medical equipment like hospital beds, medical supplies such as
incontinent pads, and medications are also covered in such a plan. The National
Hospice Helpline at 1-800-658-8898 can give you information on hospice
locations in your area.
Institutional
care ranges from residence centers for ambulatory patients who need only
limited assistance to nursing homes for bed-bound
patients with continual needs. Your agency on aging should have a list of
licensed facilities. It is recommended that you visit several facilities to see
how staff interacts with patients. You may want to make a point of coming
during visiting hours so you can talk to residents and their family members and
see how they like the facility. (Another suggestion: If you like what you see
during the day, come back one night to see if the night staffing is adequate to
meet the needs of all patients.)
Help for You
The person most often overlooked in the caring process is
the caregiver. It is critical not to neglect your
own needs. You’ll be a less effective caregiver in the long run if you cannot
admit your own limitations and play to your strengths. Here are a few tips:
• Learn as much as you can
about your loved one’s medical condition up front, so you know what to expect
and can anticipate problems. You’ll be better equipped to
organize the home environment and set up a routine to minimize disruption and
maximize the quality of family life for all members.
• Don’t try to play the
martyr and take everything on yourself. Let other family members and friends
know that you can’t do it without their help. You’re not doing the Alzheimer’s
patient or your family any favors by trying to isolate them from one another.
Get a commitment from all family members to contribute to the care in whatever
ways they can. This begins with a firm, spoken consensus that you are all in
this together, and that you all agree on the best course of action. Decisions
that are unanimous — or as nearly unanimous as is humanly possible — spread the
responsibility among family members more equally.
• Get appropriate legal
and financial advice from the start. Make
sure every detail is nailed down, so you can concentrate on the
important business of caregiving.
• Seek out other
caregivers for information, comfort, and a “reality check.”
Look for a caregiver support group, which can provide you with much needed emotional
support, as well as help in finding the right resources.
• Make sure you get
regular breaks to restore your energy and sense of self, so you can better
carry out your duties as caregiver. Allow yourself the time to do
whatever it is you like to do. You should also consider taking a vacation, even
if it’s only for a few days. Hire a home health aide to cover for the times
you’re gone.
• Accept changes in the
patient’s behavior. Your control of the caregiving situation will be frequently challenged. Remember
to simplify, reassure, and reinforce things for the patient.
• Use your body wisely.
To prevent back injuries, never bend at the waist to pick up or move the
patient. Instead, flex at the knees and hips and push up using the upper leg
muscles. Try to work at waist level as much as you can. When transferring the
patient from bed to chair, point your feet in the direction of the move; this prevents the twisting
of your spine, a potentially hazardous movement.
• If you have to put your
loved one in a nursing home, try not to feel unduly guilty.
You’ve done everything in your power for your loved one, and it is no longer
enough. Thousands of families with a loved one who has Alzheimer’s have made
this wrenching decision.
• Try to keep your
pleasures in your life while you are a caregiver. Research shows
that a healthy leisure life can buffer the effects of stress. Try to arrange to
have some time to pursue your hobbies, spend time with a friend, go out to
dinner with a loved one, or just plain read a book. You are entitled and it’s
good for you. Being a caregiver does not mean that you should give up things
you enjoy. If you make a point of doing things you enjoy, you will be a happier
and more content person.
Resources for the Caregiver
Wendy
Lustbader has produced a DVD (60 minutes) on caregiving entitled: A Prescription for Caregivers. Filmed
in front of a live audience of caregivers, this presentation is packed with
humor and stories from real life. Topics include: heeding resentment as a
warning sign of doing too much, the many varieties of guilt, options for
self-care, and figuring out how much care is “enough.” Both caregivers and
professionals who assist them will find ideas on how to make life better for
the giver and receiver of care. The video normally sells for $85.00, but Ms. Lustbader is giving our readers a special price of $30.00
for home use only.
She
is also the author of two books: Taking Care of Aging Family Members
($16.00) and Counting on Kindness ($14.00). To order these resources, mail
your check or money order to Wendy Lustbader,
Innovative
Caregiving Resources has developed a series of 13
different videos designed to provide short periods of respite time from caregiving responsibilities while providing enjoyable
interaction for the care-recipient. Each video presents a simulated visit with
the care-recipient with pauses, music, props and appropriate techniques to
capture and maintain the attention of an individual with moderate to advanced
staged Alzheimer’s disease. Titles include, Gonna
Do a Little Music, Remembering When, Sharing Christmas Cheer, Sharing Favorite
Things, Sentimental Sing-along, A Kibitz with David, A Visit with Maria. Additionally,
Innovative Caregiving Resources has videos developed specifically for the
caregiver to facilitate exercise, relaxation and ideas for cooperative
activities with the care-recipient. To order or to get a catalogue, contact:
Innovative Caregiving Resources
801-272-9806
800-249-5600
AARP Webplace on Caregiving
http://www.aarp.org/family/caregiving
This website has information on caregiving,
resources, publications and
links
to other caregiver websites.
Making the Moment Count: Leisure Activities for Caregiving
Relationships - Joanne Ardolf
Decker (1997).
Failure-free Activities for the Alzheimer’s Patient
- Carmel Sheridan (1995). Dell Books, ISBN: 0440506050. This
book offers simple activities which are enjoyable for the care-recipient and
the caregivers.
Today’s Caregiver Magazine
800-829-2734
Caregiver Connections
Maintaining
a good relationship with a caregiver is vital. Here are
some reminders to help keep that relationship healthy and helpful.
Stay
connected. Don’t allow isolation to create a forum for depression,
anger and helplessness. Send e-mails, make phone calls, invite
small groups of friends and family to visit. Revive the art of letter writing.
Join a support group. Develop your own hobbies. Become a self-styled expert on
something.
Don’t
depend on one person. It is easy to get in the habit of
relying on just one person to provide support. This contributes to the
caregiver’s burnout and loss of patience. Involve family members as early as
possible, and share tasks. Not everyone has the ability or the talent
for around-the-clock caregiving, but they may be
willing to assist with particular needs. Be specific when you ask for help.
Encourage
time away. If you have a caregiver, make sure he or she takes
breaks. Be willing to go to an adult daycare or be cared for by others to give
the caregiver time to recharge. Take a break. For a few
minutes, for a day, for a week. Recharge your physical and emotional
energy by
getting away from the stress of care, even if only for brief periods.
Say
thank you. Caregiving can be a stressful job. Expressing
consideration, emotional connection, and appreciation are ways you can help
your caregiver care better for you. Recognize the positive. Look for
opportunities to celebrate when things go well. Recognize caregiving
as a way to show love and serve. Cultivate your sense of humor.
It’s there, even in facing a dementing illness. Look
for and create opportunities to laugh.
Take
care of your physical needs. Eat well-balanced meals. Improve
your fluid intake. Get the rest you need. Get periodic checkups. Stay
physically active. Try to involve your loved one in swimming, walking, or
biking.
Where to turn? Your local area Agency on Aging can
link you with
resources. Also, try the Alzheimer’s Association at 1-800-272-3900, Alzheimer’s
Disease Education and Referral Center (ADEAR)
at 1-800-438-4380, National Family Caregivers Association at
1-800-896-3650, Alzheimer’s Disease Sharing Care at 1-866-736-4695.