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My Caregiver JOURNAL As a caregiver, people rely (Superior HealthPlan)

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My Caregiver
JOURNAL
As a caregiver, people rely on your strength,
your understanding, your knowledge and your
dependability. But mostly, they count on your care.
This journal will give you valuable tips and a place
to record vital information, as well as a journal to
write down your feelings and concerns.
DISCLAIMER: This book provides general information about
caregiving and related issues. The information does not
constitute medical advice and isnot intended to be used for the
diagnosis or treatment of a health problem or as a substitute for
consulting with a licensed health professional. Consult with a
qualified physician or healthcare practitioner to discuss specific
individual issues or health needs and to professionally address
personal medical concerns.
The power to care.
Caring for someone is rarely easy. The balance
between taking care of a loved one’s health, safety
and emotions can be overwhelming. This workbook
will give you some tools and resources to help you care
for a family member, a friend, a relative or patient.
The key is that when providing care, YOUR well-being
should be top of mind. With your health, safety and
emotions in check, you’ll be better prepared to care for
another. So, take care of yourself, give of yourself and
define yourself with the power to care.
What’s Inside
Health Plan Information ......................... 3
My Care Recipient’s Information ..................4
The Basics of Caregiving ........................ 5
Signs of the Times ............................. 7
Roles of a Caregiver ............................ 7
Relationship Issues ............................8
Why We Do It ................................. 8
Communicate ................................ 10
Respect Privacy .............................. 10
10 Ways to Make Things Easier ...................11
5 Ways to Keep Yourself Healthy ..................12
Keep Safety in Mind ............................16
Safety Check: At Home Safety Checklist ...........17
Keeping It All Together ..........................19
Medication Log ..............................
19
Health History ............................... 22
Lifestyle .................................... 22
Allergies .................................... 23
Advance Directives ........................... 24
Fitness for You ............................... 25
My Exercise Log .............................. 27
Dealing with Stress ...........................29
Rest, Relax, Recharge .........................30
Ask for Help ................................. 31
Take a Break ................................. 32
Calling the Care Manager/Service Coordinator ..... 33
Managing Caregiving & Work .................... 34
Legal Matters ................................ 36
Support Groups .............................. 38
My Journal ..................................40
Resources for Caregivers .......................50
3
Health Plan Information
This is your workbook. Use it as a guide and
resource for your general caregiving routine.
Make the workbook your own by filling out this info.
Primary Health Insurance Provider Type:
Private Medicare Medicaid Other
Company (if private):
Member Number:
Group Plan Number:
Member Services Phone Number:
Care Manager/Service Coordinator Name:
Care Manager/Service Coordinator Phone Number:
24/7 Nurse Advice Line Phone Number:
Secondary Health Insurance Provider Type:
Private Medicare Medicaid Other
Company (if private):
Member Number:
Group Plan Number:
Member Services Phone Number:
Care Manager/Service Coordinator Name:
Care Manager/Service Coordinator Phone Number:
24/7 Nurse Advice Line Phone Number:
4
My Care Recipient’s
Information
Street Address:
City/State/ZIP:
Phone:
Email Address:
Date of Birth:
Employer:
Employer Phone:
Primary Care Doctor:
Primary Care Doctor’s Phone:
Specialist Doctor:
Specialist’s Phone:
Specialist Doctor:
Specialist’s Phone:
Attendant Care Provider:
Attendant Care Provider Phone:
Respite Care Provider:
Respite Care Provider Phone:
Pharmacy Name:
Pharmacy Phone:
Non-emergent Medical Transportation Name:
Non-emergent Medical Transportation Phone:
Emergency Contact Name & Phone:
Secondary Emergency Contact:
5
The Basics of Caregiving
CAREGIVER:
Caregivers are broadly defined as family
members, friends or neighbors who provide
unpaid assistance to a person with a chronic
illness or disabling condition.
Maybe you’ve trained to be a caregiver, with completed coursework
and professional certification. You may have a healthcare background
and have made it your working life to tend to the needs of others.
Most likely you’re new to the role of caring for a family member or
friend who can no longer care for him or herself. If so, we hope you
find this workbook helpful as it guides you through some of the
concerns you might come across.
Providing care for a person is rarely easy. The time spent caring for
someone who can’t care for him or herself can drain you physically
and emotionally.
But if you’re the type of person willing to give of yourself to help
someone else, this book might help.
Who can be a caregiver?
» A parent for a child
» A child for an older or
disabled parent
» A spouse
» A niece, nephew or grandchild
» A family friend
» A neighbor
» A hired professional
healthcare worker
» You or anyone else
6
Caregiver Basics
As a caregiver, you may share in the
responsibility of someone’s well-being.
You may provide basic functions for a person
in need, such as making meals and feeding,
bathing, grooming, walking or other daily routines.
What is the care recipient’s primary disability or chronic condition?
What supportive services or accommodations are needed?
7
Signs of the Times
If you suspect that your care recipient may
be at the point where he or she needs some
extra care and attention, keep an eye out for
these possible warning signs:
» The house is messy and in a bit of disorder
» Bills are unpaid, and mail is piled up
» Dirty dishes are piling up in the sink
» Food is spoiling or has expired in the refrigerator
» Trash is piling up
» Plumbing issues are causing odors
Issues like these could signal early signs of depression,
dementia, vision and mobility problems. Look for these signs
on your visits and get involved if any exist.
Roles of a Caregiver
As a caregiver, you wear many hats: doctor,
nurse, lawyer, secretary, accountant,
chauffeur, cook, housekeeper and social
worker. Your duties may include:
» Keeping track of information on your loved one’s
condition, treatment and care
» Monitoring your loved one’s health
» Helping your loved one with his/her needs
» Helping your loved one make choices about his or her health
» Handling your loved one’s emotional needs
» Keeping track of financial dealings on behalf of your loved one
» Planning for your loved one’s future care and treatment
8
Relationship
Issues
Getting to know your care recipient is important in providing
the kind of care he or she needs. Your relationship may
intensify during this time, in good and bad ways.
The secret to success is that it is really about the two people
taking care of each other during a difficult time. It’s all about
give and take. Realizing this will lead to a relationship that
thrives. Be gentle, be caring and be understanding.
Why We Do It
Caregiving provides many positive experiences for the
caregiver. We feel good about ourselves when we are useful,
especially by helping others who cannot care for themselves.
We may also see this care as a way of paying back our parents
for taking care of us as we were growing up. We’re motivated
by the belief that we’re doing the right thing. And we are.
Use the journal in the back of this book to explore your own
reasons for caregiving and the feelings that go along with
those reasons.
9
Caregiving isn’t without challenges.
When asked, caregivers give
examples of stress like these:
» Loss of privacy
» Limits on free time or a social life
» Less time for other family members
» Giving up vacations, hobbies or favorite activities
» Physical and mental exhaustion
» Frustration with not making progress with care recipient
» Financial strain
What do you think could become a problem
for you during caregiving?
10
Communicate
Your care recipient may worry about being
a burden, taking up your time and asking
too much of you.
Create productive communication by doing these things:
» Show respect
» Watch what you say – try not to use phrases like “You never...”
or “You always...”
» Listen to the feelings of your care recipient with compassion
» Build and encourage two-way conversations
» Allow him or her to show independence – your loved one has a right
to his or her dignity, so allow him/her to do things in his/her own way
» Speak in ways that support the abilities of your loved one
» Be reassuring when talking to your care recipient
» Notice fears and react in a positive manner
» Work through disagreements to reach a solution
» Set aside time each day when your care recipient knows you have
the time and energy to listen
Respect Privacy
Imagine having to bathe and dress the person who bathed and dressed
you when you were young. This role reversal can be hard when you’re
caregiving for your parent. Your elder may withdraw or become angry
over the situation. You both may be embarrassed. Have a professional
attitude when touching your older family member’s body. Slow down
and describe what you are about to do. Taking a more relaxed approach
will feel less like you are invading personal territory.
11
Ways to Make
Things Easier
1
GET READY: Learn what is expected of you. Figure out
your schedule and how much time you can devote.
2
GET ORGANIZED: Organize medical and legal info and
keep it up-to-date, in order and easy to find.
3
GET SUPPORT: Seek information and advice from other
caregivers and support groups.
4
GET TALKING: Learn the best ways to communicate with
the doctors and healthcare team.
5
GET HELP: Take help from others who offer it. Don’t be
afraid to ask for specific tasks.
6
GET HEALTHY: Take care of your own health so you are
strong and well enough to care for another person.
7
GET REST: A good night’s sleep every night and regular
breaks during the day will help you concentrate and have
the energy to provide for others.
8
GET HAPPY: Depression can be an issue when caregiving for
another. Watch for signs and seek professional help if you need it.
9
GET THE LATEST TECHNOLOGY: Caring can be easier if
you’re open to using technology. Personal computers, tablets
and smartphones can keep you connected to information,
healthcare teams, pharmacies and the health plan.
10
GET TO KNOW YOURSELF: You’re now doing one of the
toughest jobs there is. Figure out what makes you tick and
how understanding yourself can make you a great caregiver.
12
5 WAYS TO
Keep Yourself Healthy
Without guilt, you must take care of yourself. If you are not
well-rested and healthy, you cannot tend to the healthcare
needs of others. The people who count on you want you to
be fit and well. Follow these steps to keep your own health
and well-being as an important part of your caregiving plan.
»
1
SLEEP WELL
Don’t cut back on your sleep schedule. Trying
to get more done by sleeping less rarely works.
You need more sleep than you think you do.
Eight hours a night is normal. Cheating yourself
of this precious downtime means:
» Your mood could change
» Your energy level may reduce
» Your productivity could go down
Your stress may
be greater
» Your ability to handle
stress may weaken
Sleep Chart:
DAY / DATE HOURS SLEPT
HEALTH / MOOD
the following day
Make copies of this chart or use a journal page to continue.
13
2
EXERCISE & STAY ACTIVE
Exercise has many benefits. Relieving stress
and making moods better are a couple of the
benefits. It may be hard to motivate yourself to exercise
after a demanding and stressful caregiving shift, but it
will help you feel better. Regular exercise will boost your
energy level and may help you be less tired.
Try to exercise for at least 30 minutes each day. Find time
in your schedule. It may be when you get up in the morning,
during a lunch break, before dinner or later in the evening.
3
EAT WELL
Fuel your body with the best things to give you lasting energy:
» Fresh fruits
» Vegetables
» Whole grains, like brown rice or oatmeal
» Lean proteins, like fish, chicken, eggs or beans
» Healthy fats like nuts and olive oil
Sugar and caffeine may seem like they provide energy, but they
don’t last. The energy rush crashes quickly, leaving you more tired.
Healthy Foods Chart:
DAY / DATE TIME HEALTHY FOODS EATEN
14
4
SEE YOUR DOCTOR
Make it a point to keep all of your doctor appointments,
follow his or her instructions and take your prescribed
medicine and vitamins. Know your boundaries and don’t try
to do too much. To care for a loved one, you first have to get
your own health in order.
Work with your doctor to fill out this
wellness chart. Compare your current
numbers to your ideal numbers and work
toward getting closer to those ideals.
Wellness Chart:
My ideal blood pressure: My current blood pressure:
My ideal LDL cholesterol: My current LDL cholesterol:
My ideal HDL cholesterol: My current HDL cholesterol:
My ideal triglyceride level: My current triglyceride level:
My ideal weight: My current weight:
My ideal amount of time
staying physically active:
My current amount of time
staying physically active:
My ideal number of fruits
and vegetables each day:
My current number of fruits
and vegetables each day:
15
5
RELAX AND MEDITATE
Setting aside a time to unwind and meditate can be
a great stress reliever. If you don’t have a block of
time, even just a few minutes in the middle of your
day can get stress levels under control. Practice a
routine of deep breathing, clearing your mind and
focusing on positive thoughts. Consider adding yoga
or stretching to relax even more.
Repeating phrases or mantras may help you
reduce stress and bring yourself back to calm.
Here are some examples to get you started:
» In every moment, peace is a choice.
» All is well.
» I did well. I don’t have to be perfect.
» I will stay calm and carry on.
» I surrender and let go.
16
Keep Safety in Mind
Safety for your care recipient and yourself should
always be a main concern. For frail older adults
and those with Alzheimer’s disease and
dementia, everyday things can pose problems.
Check that elderly care recipients are wearing appropriate
shoes with non-slip soles.
Help your older adult prevent falls by making sure he/she:
» Exercises regularly.
» Asks the doctor or pharmacist to check for medications that
may cause side effects, such as dizziness or drowsiness.
» Sees an eye doctor at least once a year and updates his/her
eyeglasses prescription.
» Takes out all tripping hazards from the home.
» Improves lighting in the home and adds grab bars and rails.
Getting calcium and vitamin D from food or supplements,
doing weight exercises and getting screened for
osteoporosis can help lower the risk of hip fractures.
BRIGHT IDEA
Put in motion-sensor lights in the bathroom,
hallways, stairways and bedrooms.
17
Safety Check
AT HOME SAFETY CHECKLIST:
All Rooms and Hallways
Electrical cords out of the
way and secured to walls
Walkways free of furniture
and clutter
Carpeting and rugs secured
with non-slip backing
All light bulbs and
switches working
Bathroom
Grab bars mounted in shower
and near toilet, if needed
Shower/bath has non-slip
bathmat, secured with suction
Nightlight
Bathroom rug or mat with
non-slip backing
Free of clutter with enough
room to move around
Shower bench or chair
Bedroom
Bedside table with a
secured lamp
Clear walkway from bed to bathroom
Sturdy chair to sit in
while dressing
Kitchen
All needed items reachable
without using a stool
Place to sit when
making food
No cracks or edges in
kitchen floor
Electrical cords away
from water sources
Stairs
Free of clutter
Room to move at top of stairs
All carpeting secured on steps
Handrails secured and at
the right height
Well-lit stairways with
switches at top and bottom
18
Other Safety Tips
» When not in use, store clothing, bedding and
other items where they can be reached with ease.
» Place brightly colored tape on the edge of each step.
This will signal you’re at the drop-off point.
» Make sure all floorboards are even.
» Put a liquid soap dispenser in the shower. Slips and falls
can happen when trying to pick up a dropped bar of soap.
» Make sure the water is set at a safe temperature
(120°F or lower).
» Make sure items used often are placed within reach.
» Lock up cleaning supplies or flammable liquids.
» Keep a first aid kit in an easy to find place.
BRIGHT IDEA
Make sure a lamp and phone are
beside the bed of your care recipient.
19
Keeping It All Together
As a caregiver you will need to keep all forms and info
organized and at your fingertips at all times. Fill out
these forms and keep them with you. Keep this info
private, to be shared only with your care recipient’s
healthcare team and close family members.
MEDICATION LOG
Use this log to keep track of your care recipient’s medicine schedule.
Share this list with your loved one, family members and healthcare team
so all know of the medicines taken and the schedule for taking them.
Patient Name:
Date of Birth:
Local Pharmacy Name: Phone:
Pharmacy Address:
Mail Order Pharmacy:
Mail Order Pharmacy Phone/Website:
Over-the-Counter Medications
Allergy Relief/Antihistamines:
Antacids:
Aspirin/Other Pain or Fever Relief:
Cold/Cough Medicines:
Diet Pills:
Herbal Supplements:
Laxatives:
Sleeping Pills:
Vitamins/Minerals:
Other:
20
Prescription Medications
MEDICINE 1 MEDICINE 2
MEDICINE NAME
DOSE
WHEN TO TAKE
WHY IS IT TAKEN?
START DATE
END DATE
PRESCRIBED BY
SIDE EFFECTS OR
DANGER SIGNS
MEDICINE 3 MEDICINE 4
MEDICINE NAME
DOSE
WHEN TO TAKE
WHY IS IT TAKEN?
START DATE
END DATE
PRESCRIBED BY
SIDE EFFECTS OR
DANGER SIGNS
21
Prescription Medications
MEDICINE 5 MEDICINE 6
MEDICINE NAME
DOSE
WHEN TO TAKE
WHY IS IT TAKEN?
START DATE
END DATE
PRESCRIBED BY
SIDE EFFECTS OR
DANGER SIGNS
MEDICINE 7 MEDICINE 8
MEDICINE NAME
DOSE
WHEN TO TAKE
WHY IS IT TAKEN?
START DATE
END DATE
PRESCRIBED BY
SIDE EFFECTS OR
DANGER SIGNS
22
Health History
Check the items that apply to your care
recipient’s past or present state of health.
Alcoholism
Asthma
Diabetes-Type I
Emphysema
Heart Condition
Hepatitis A
High Cholesterol
Kidney Disease
Rheumatic Fever
Stomach/Intestinal Problems
Thyroid Disorders
Tumor
Arthritis
Cancer
Diabetes-Type II
Glaucoma
Hemodialysis
Hepatitis B
High Blood Pressure
Intellectually Disabled
Seizures
Stroke
Tuberculosis
Other:
Lifestyle
Smoking: Yes No
Packs per day:
Number of years:
Alcohol: Yes No
Drinks per week:
Number of years:
23
Allergies
List all food, medication, environmental and other
factors to which your care recipient may be allergic.
ALLERGEN REACTION
LAST
INSTANCE
TREATMENT
The most common allergy triggers:
Animal dander
Dust mites
Mold
Certain foods
Insect stings
Pollen
Certain
medications
Latex
24
Advance Directives
Explanations of these terms can be found on
pages 36-37.
HEALTHCARE PROXY
Name:
Phone: Cell: Work:
Agent Address:
Agent Work Address:
Document Location:
Document Contact Name: Phone:
LIVING WILL
Document Location:
Document Contact Name: Phone:
POWER OF ATTORNEY
(Fill in the information for the person with Power of Attorney)
Name:
Phone: Cell: Work:
Agent Address:
Agent Work Address:
Document Location:
Document Contact Name: Phone:
25
Fitness for You
Caring for someone else can be time-consuming
and exhausting. Spending your free time exercising
might seem like the last thing on your list. But it just
might be the best thing for your body. Exercise can:
» Keep you from getting sick
» Help you sleep better
» Give you energy to last through the day
» Lower blood pressure and cholesterol
» Lower stress
» Make you a better caregiver
If exercising feels more like a chore, you’re much less likely
to do it. The good news is: exercise can be easy and fun.
It doesn’t have to be a full gym workout five times a week.
FIND A FITNESS FRIEND
Pick a friend who has a lot of energy and you enjoy being around.
Motivate each other to develop a fitness routine and stick to it.
Have fun while you walk, jog, bike or work out.
TRY A GROUP FITNESS CLASS
Many parks and community centers have fitness activities.
Look for classes that teach yoga, tai chi, swimming, step
aerobics and even martial arts. You’ll meet new people,
learn new things and improve your overall wellness.
26
DANCE
Dancing can keep you active and fit. Try ballroom dancing,
square dancing or salsa dancing. Dance helps your balance
and builds your endurance. And it’s fun.
GET ACTIVE WITH THE KIDS
Grab your kids and go for a hike, play basketball, get to the park
and be active. They need exercise as much as you do. Hold
friendly competitions each week and get everyone involved.
TRY A TEAM SPORT
Softball, bowling, volleyball and tennis teams form regularly.
Join one and stay active as you compete.
TURN CHORES INTO FITNESS
Activity comes in many forms. Gardening, raking leaves,
mowing the grass, shoveling snow, grocery shopping and
washing the car burn calories and keep you active and moving.
REMEMBER: Exercise is vital for caregivers.
Set a goal of 30 – 40 minutes of moderate exercise
three or more times a week.
Always talk to your doctor or healthcare team before
starting any exercise program.
27
My Exercise Log
DAY / DATE
TIME
OF DAY
EXERCISE
LENGTH OF TIME
(REPETITIONS)
28
My Exercise Log
DAY / DATE
TIME
OF DAY
EXERCISE
LENGTH OF TIME
(REPETITIONS)
29
Dealing with Stress
As a caregiver, there are a lot of demands on you physically,
mentally and emotionally. You may feel the pressure and
stress of your situation, and think you are in over your head
with little or no control. Watching for the signs of stress can
help you better handle it.
SIGNS OF CAREGIVER STRESS
Check the ones you’ve experienced yourself since serving
as a caregiver:
Anxiety
Irritability
Sleep problems
Problems focusing
Drinking more
Eating more
Health problems
Depression
Tiredness/run down feeling
Short temper
Resentful feelings
Smoking more
Neglecting duties
Cutting back on free time activities
What other signs of stress have you experienced?
30
Rest, Relax, Recharge
It’s essential to switch off your caregiver mode
and relax. Stress and burnout are real risks.
It’s easy to find ways to relax that won’t cost a lot of money. There are
many little things you can do to reduce caregiver stress:
» Take a long bath
» Take a walk
» Bake a favorite dish or dessert
» Read a relaxing book
» Browse the library
» Go see a movie
» Plant some flowers or do some
gardening
» Practice yoga
» Talk to a friend
» Listen to soothing music in a
low-lit and comfortable place
What other relaxing activities do you enjoy that serve to de-stress you?
31
Ask for Help
You can’t do this alone. And you shouldn’t have to.
Trying to tackle all the duties and burdens of caring for
a loved one on your own won’t work.
» Let those around you know you need help.
» Spread out the duties and get as many family members
involved as you can. Delegate duties: someone to shop for
food; someone to see to the finances; someone to set up
appointments; someone to oversee medical concerns, etc.
Set up a schedule and assign times and tasks.
» Don’t say no to help when offered by a family member or friend.
Many people will want to help, and you’ll feel better by taking it.
» You can’t control every part of your care plan. Let people help and
don’t micro-manage their efforts. That can harm their desire to help.
» Make a contact list of those you think will be willing to help.
» Create a schedule and document your loved one’s likes and dislikes
and regular routine.
My helper resources:
NAME PHONE TASKS
32
Take a Break
You owe it to yourself. Your loved one most likely needs
the break, too. Add breaks to your schedule and see
that you take them. You’ll be a better caregiver by giving
yourself rest and time to do the things you need and want
to do for yourself.
» Set aside at least 30 minutes of “Me Time” each day. This is time
to do what makes you feel good, relaxed and unstressed. Enjoy
this time without guilt and make it a priority in your day.
» Raise your spirits while you lower your blood pressure. Take a
long candle-lit bubble bath. Read a magazine. Anything that
relaxes you and makes you feel special will go a long way in
defeating stress.
» Laughter is a known stress buster. Watch a funny movie or TV
show. Read a funny book. Talk to a friend who knows how to
bring out your smile.
» Go shop with a friend. Go for a walk or a drive while others are
caring for your loved one.
Make a list of places close by that you enjoy visiting:
33
Calling the Care Manager/
Service Coordinator
The Care Manager/Service Coordinator is there to support you
and is an important part of your care recipient’s care team.
While there are many reasons to call, here are some to keep in mind*:
» Change in condition or available support needs
» ER visit
» Hospital admission
» Fall
» Urinary tract infection (UTI)
» Significant injury
» Attendant Provider not providing the agreed upon services
» New diagnosis or medication
» Assistance with finding a provider or changing providers
» Difficulty getting an appointment with a provider
» Potential change in living or work arrangement for the care recipient
» Need for additional caregiver task training
» Durable Medical Equipment (DME) broken or in need of repair
* Nothing within this book should be viewed as medical advice. In the case
of a medical emergency, contact your healthcare provider or call 911.
34
Managing Caregiving & Work
Millions of Americans juggle the challenges of caregiving with
a full-time or part-time job. This struggle for balance can lead
to emotional fatigue, physical exhaustion and distraction.
This reality of life has led many employers to be more
generous with allowing their workforce to accommodate
these demands. Some companies even help with finding
community resources, counseling, legal and financial aid
and support groups for caregivers. Many offer flex time or
leave for their employees caring for a family member in
need. If you have a full or part-time job, look into the options
your company offers.
Tips for Managing Work
and Caregiving:
1
LEARN THE COMPANY POLICIES
Read your employee handbook or speak with someone from
Human Resources (HR) to find out the company’s policy
regarding time off for caregiving. Your company may have an
Employee Assistance Program (EAP) that provides benefits
for caring for an elderly parent or relative.
2
KNOW YOUR RIGHTS
The federal Family and Medical Leave Act (FMLA)
provides eligible workers with 12 weeks per year of
unpaid leave for family caregiving. You can’t lose your job
security or health benefits during these times. Ask your
HR department for more info.
35
3
TALK TO YOUR MANAGER
Tell your manager about your caregiving duties and
demands. Ask about changing your work times if your
caregiving calls for being away from your job. Be honest
about this demand on your time and let your manager
know you’re willing to work other hours to make up for
time lost while caregiving.
4
ASK ABOUT FLEXTIME
Ask your manager about altering your work schedule, going
from full-time to part-time or working earlier or later shifts
to accommodate your caregiving needs.
5
STAY ORGANIZED
Try to manage your time as best as you can. Write to-do
lists and use calendar reminders. Make a list of priorities
and address those first. Don’t be afraid to assign tasks to
others in the family to help with the caregiving.
6
APPRECIATE
Be thankful and appreciative of your coworkers and
managers who help out with your job duties while you
are going through these tough times. Offer to take on
extra work when you can and help others who may find
themselves in a situation like yours.
36
Legal Matters
Caregiving comes with legal and financial concerns.
Make sure you have a working knowledge of these
concepts that are put in place to ensure the
wishes of your loved one are met.
ADVANCE DIRECTIVES
Advance directives are legal documents that a person writes to tell the
healthcare team what medical care and treatment he or she wants or
doesn’t want. When a person can’t speak for him or herself or is too sick
or unable to make decisions, these documents make wishes known.
Having advance directives in place for your loved one will make sure he
or she gets the care desired, or forgoes the treatment not wanted.
Advance directives cover two types of info:
» The kinds of treatment wanted or not wanted by the family member
» The person put in charge of making healthcare decisions if the family
member isn’t able to
HEALTHCARE PROXY
This form of advance directive allows someone to name a
healthcare substitute. This substitute will make legal healthcare
decisions for the person.
Healthcare Proxy Form: A form filled out that gives another person
the right to act on healthcare matters for another person. Each
state has its own laws and rules about this decision making process.
Contact your state’s Department of Health to learn the laws and
obtain the form that applies for your state.
LIVING WILL
This is a written account of what healthcare treatment a person wants
or doesn’t want in the future. Again, this document makes sure a
person’s wishes and decisions are followed, in the event that he or she
is not able to make them. Healthcare teams and family members must
abide by these legally-binding wishes.
37
DO NOT RESUSCITATE DNR ORDER
This document makes sure the wishes of a person who doesn’t
want CPR or other life-sustaining methods used if his or her heart or
breathing stops are met. Here are some things to keep in mind:
» The DNR order must be signed by a doctor
» If you are a family member caregiver, you may also need
to sign the order
» The DNR order will still be in effect, even if no healthcare
proxy has been chosen
» There is also an Out-of-Hospital DNR Order that tells emergency
staff not to perform CPR if your family member’s heart fails while at
home. This order must also be signed by a doctor.
Many states have POLST (Physician Orders for Life-Sustaining Treatment)
forms that allow for DNR orders to be followed when patients are
taken from one healthcare setting to another. See POLST.org for more
information and to learn about the laws in your state.
LEGAL HELP
It’s wise to speak to a lawyer about these documents and certain
financial concerns. A lawyer can help you set up a will or estate plan,
as well as give advice on key matters in the life of your care recipient.
Legal assistance may be available in your community. Care Managers/
Service Coordinators may be able to connect you to a resource.
DID YOU KNOW?
You may be eligible for tax benefits as the
caregiving relative to an older adult in the form
of tax breaks or financial help. Check out irs.gov
or call 1-800-829-1040 to learn more.
38
Support Groups
You can’t go it alone. But sometimes finding friends,
allies and emotional outlets nearby can be a
challenge. That’s where support groups come in.
They’re great resources to lean on when you’re:
» First becoming a caregiver.
» Learning about caregiving.
» Dealing with the stress of caregiving.
Sharing your stories and
concerns with others who
have similar experiences.
Support groups listen to your concerns and problems, giving expert
answers to your questions and offering advice. You also listen to others
who have issues and need advice. In time, you’ll be able to offer advice
to others in need. The first thing you’ll learn pretty quickly is that
you aren’t alone in this. Others are in the same situation, with similar
problems and challenges.
Some of these groups may be found locally. Others you’ll be
able to reach online.
HOW SUPPORT GROUPS WORK
Local in-person groups:
» Group members live nearby and meet regularly.
» At each session, you make new friends and speak
face-to-face about your concerns while listening to others.
» The meetings offer a social outlet, a chance to get out of the
house so you don’t feel all alone.
» In most cases, the meetings will be held at a set time and place.
Attending regularly will help you get the most out of these
support group sessions.
» Learn about local resources from the other local group members.
These may include doctors and specialists, health and financial
programs or other outlets that could be of help to you.
»
39
ONLINE SUPPORT GROUPS
» Group members are from all over the world, meeting online to
talk about their concerns.
» You can find these groups online through email, websites,
message boards, social media or through recommendations
from healthcare providers.
» If you’re short on time or can’t leave the house, these online
support groups may be ideal.
» These groups are most likely easy to reach at any time, offering
help when you need it.
» Help will come from a variety of online participants, so finding
answers to even your most unique questions and concerns is likely.
You can find a community support group by checking the local phone
book, by dialing the United Way at 2-1-1, by asking your doctor or
hospital or by calling your Care Manager/Service Coordinator.
MY LOCAL SUPPORT GROUP
Name of Group:
Dates/Times:
Location:
MY ONLINE SUPPORT GROUP
Name of Group:
Web Address:
40
My Journal
Use these pages to start journaling about your caregiving
experiences. Once these pages are full, keep your thoughts
going in another notebook.
41
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48
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Resources for Caregivers
AARP
aarp.org
Eldercare Locator
1.800.677.1116
Eldercare.gov
CAN
(Caregiver Action Network)
Caregiveraction.org
POLST
(Physician Orders For
Life-Sustaining Treatment)
POLST.org
Stroke
Stroke.org
1-800-STROKES (787-6537)
Brain Injury
Association of America
www.BIAUSA.org
Serious Mental Illness
NAMI.org
1-800-950-NAMI (6264)
Medicare
Medicare.gov
Medicaid
Medicaid.gov
Disability
Disability.gov
U.S. Living Will Registry
®
uslivingwillregistry.com
MedlinePlus:
End of Life Issues
medlineplus.gov/
endoflifeissues.html
Dementia/Alzheimer’s
ALZ.org
1-800-272-3900
Family Caregiver Alliance
Caregiver.org
1-800-445-8106
NASUAD (National
Association of States United
for Aging and Disabilities)
nasuad.org
© 2017 Centene Corporation. All rights reserved. All materials
are exclusively owned by Centene Corporation and are protected
by United States and international copyright law. No part of this
publication may be reproduced, distributed, displayed, stored in
a retrieval system, or transmitted in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise,
without the prior written permission of Centene Corporation. You may
not alter or remove any trademark, copyright or other notice. v.2
Inside Back Cover Page
»
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My Caregiver Journal
SOMEBODY NEEDS YOU.
Caregiver roles can vary, but all exist because someone
needs help and care. To support you in your important role,
this journal provides tips, resources and tools to assist you
in looking after your care recipient and yourself.
Topics in this book include:
Caregiving basics
Safety
Your health and fitness
Dealing with stress and burnout
Organization
Legal and financial matters
Support groups and resources
And more
978-0-9916168-3-1
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