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10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with
respite breaks often.
2. Watch out for signs of depression, and don’t delay in getting professional
help when you need it.
3. When people offer to help, accept the offer and suggest specific things that
they can do.
4. Educate yourself about your loved one’s condition and how to communicate
effectively with doctors.
5. There’s a difference between caring and doing. Be open to technologies and
ideas that promote your loved one’s independence.
6.Trust your instincts. Most of the time they’ll lead you in the right
direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your
back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you
are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down so you won’t forget them
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment, so
the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability. With all the
information on the Internet it is easier than ever before.
- Learn the routine at your doctor’s office and/or the hospital so you can make
the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with
“why.”
- Separate your anger and sense of impotence about not being able to help your
loved one as much as you would like from your feeling about the doctor.
Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would
take stock of your situation, help you access the right services, counsel you
and your family to help resolve some of your differences, then monitor your
progress with an eye toward channeling your energy and abilities as effectively
as possible? If your answer is “yes,” you’re not alone. Having the help of a
care coordinator (often called a care manager) could make all of our lives
easier and less lonesome, and help us be more capable family caregivers. While
most of us may not have access to a care coordinator, we can all learn how to
think and act like one, thereby reaping numerous benefits for our loved ones and
ourselves.
What Is Care Coordination?
Although every case is different, the care coordination approach usually
involves:
- Gathering information from healthcare providers;
- An assessment of your care recipient and the home environment;
- Research into available public and/or private services and resources to meet
your loved one’s needs; and
- Ongoing communication between all parties to keep information up-to-date and
services appropriate and effective.
Unfortunately, an assessment of your abilities and needs is not necessarily a
standard part of the process, but it should be. A complete view of the situation
cannot be gained without one. An objective analysis of your health, emotional
state, other commitments, etc., are key elements in determining how much you can
and cannot do yourself, and what type of outside support is needed to ensure
your loved one’s health and safety.
Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and
ideas that follow, you’ll be in a much better position to develop an organized
course of action that will, hopefully, make you feel more confident and in
control — a goal well worth working toward.
Educate yourself on the nature of the disease or disability
with which you’re dealing. Reliable information is available from the health
agency that deals with your loved one’s condition and the National Institutes of
Health. When using the Internet, stick with well-known medical sites.
Understanding what is happening to your care recipient will provide you with the
core knowledge you need to go forward. It will also make you a better advocate
when talking with healthcare professionals.
Write down your observations of the present situation including:
- Your loved one’s ability to function independently, both physically and
mentally.
- The availability of family and/or friends to form a support network to share the
care.
- The physical environment: Is it accessible or can it be adapted at reasonable
cost?
- Your other responsibilities — at work, at home, and in the community.
- Your own health and physical abilities.
- Your financial resources, available insurance, and existence of healthcare or
end-of-life documents.
This assessment will help you come to a realistic view of the situation. It will
let you know the questions to which you need answers. It can be a handy baseline
for charting your caregiving journey and reminding you just how much you’ve
learned along the way.
Hold a family conference. At least everyone in the immediate
family should be told what’s going on. A meeting can set the stage for divvying
up responsibilities so that there are fewer misunderstandings down the road when
lots of help may be needed. A member of the clergy, a professional care
coordinator, or even a trusted friend can serve as an impartial moderator. A
family meeting is a good way to let everyone know they can play a role, even if
they are a thousand miles away. It can help you, the primary family caregiver,
from bearing the brunt of all the work all of the time.
Keep good records of emergency numbers, doctors, daily
medications, special diets, back-up people, and other pertinent information
relating to your loved one’s care. Update as necessary. This record will be
invaluable if something happens to you, or if you need to make a trip to the ER.
If you can maintain a computer-based record, that will make updating all that
much easier and it might even allow you to provide the medical team with direct
access to the information.
Join a support group, or find another caregiver with whom to
converse. In addition to emotional support, you’ll likely pick up practical tips
as well. Professionals network with each other all the time to get emotional
support and find answers to problems or situations they face. Why shouldn’t
family caregivers?
Start advance planning for difficult decisions that may lie
ahead. It’s never too early to discuss wills, advance directives, and powers of
attorney, but there comes a time when it is too late. It is also vital that you
and your loved one think through what to do if you should be incapacitated, or,
worse, die first. It can happen.
Develop a care team to help out during emergencies, or over
time if your situation is very difficult. In an ideal world there will be lots
of people who want to help. More likely you’ll be able to find one or two people
to call on in an emergency or to help with small chores. The critical thing is
to be willing to tell others what you need and to accept their help.
Establish a family regimen. When things are difficult to begin
with, keeping a straightforward daily routine can be a stabilizer, especially
for people who find change upsetting and confusing.
Approach some of your hardest caregiving duties like a professional.
It’s extraordinarily difficult to separate your family role from your caregiving
role, to lock your emotions up in a box while you focus on practical chores and
decisions. But it is not impossible to gain some distance some of the time. It
requires an almost single-minded approach to getting the job at hand done as
efficiently and effectively as possible. It takes practice, but is definitely
worth the effort.
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility - As a caregiver, you
need to be very understanding to the individual's needs. This is a very hard
time as they are being told they need to start living their life in a different
manor than they had done so previously. It will be most beneficial to educate
them, either with a professional, or through a support group. By becoming
involved in different activities with others in the same condition, the
individual will be able to make the transition much easier. As far as the actual
device, you will want to make sure that the individual is fully capable of
performing all the operations of the mobility device and can do so in a
comfortable manner. Areas to pay close attention to include an adjustable
backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down
seat adjustment, an armrest and/or footrest, and lumbar region support.
How do you care for your mobility device?
The most important areas that you need to pay attention to are referred to as
the 3 B’s…Bad batteries, bent wheel rims and
failed bearings. If you notice something that doesn’t seem
right, but it isn’t all too annoying, you should still get it looked at right
away. This could prevent a more severe accident from happening. So as the saying
goes “it’s better to be safe than sorry”.
When a wheelchair is purchased, you will want to make sure that all the correct
adjustments and modifications are made. This needs to be done by a professional
and should take up to a couple of hours if done correctly. As long as the proper
measures are taken initially, the work of maintaining the device will be
substantially easier.
Additional Resources
It's always wise to find out what your county and state have to offer in the way
of services, even if you think you won't qualify for them. Check the blue pages
of your phone book for the numbers, or go on line. Counties and states all have
web sites. Type the name of your state or county and state into any major search
engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the
Department of Health and Human Services and the specific office most relevant to
your needs, such as office on disabilities, elder affairs, or maternal and child
health.
Other good sources of information include your local hospital or clinic (social
work department), area adult day centers, social service and faith-based
agencies, and/or the local chapter of the health agency that focuses on your
loved one's condition. It is by no means certain that any of these will offer
caregiver support services, but they are good places to check, and they are good
sources for information about services to directly support your loved one.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site:
http://www.thefamilycaregiver.org
e-mail:
info@thefamilycaregiver.org
The National Family Caregivers Association (NFCA) is a grassroots organization
created to educate, support, empower, and advocate for the millions of Americans
who care for chronically ill, aged, or disabled loved ones. NFCA is the only
constituency organization that reaches across the boundaries of different
diagnoses, different relationships, and different life stages to address the
common needs and concerns of all family caregivers. NFCA serves as a public
voice for family caregivers to the press, to Congress and the general public.
NFCA offers publications, information, referral services, caregiver support, and
advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family
caregivers, in addition to those from specific organizations.
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