Caregiving Tips and Hints
- Take Care of Yourself
Caregivers often do not get adequate personal time. It is important to take care of yourself both physically and emotionally. Taking time for yourself is not selfish and will improve your capacity to care for your loved one. Make your needs known and create time to do the things that are important to you personally. Continue relationships and activities that are important to you.
- Ask for Help
Caregivers may not ask for the help they need to provide care for their loved one and to take care of themselves. Have a "wish list" available when people ask what they can do to help you. Most people want to help, but do not know what to do. Accept help when it is offered. Recognize the limits of your own endurance and strength and help your loved one accept care from others. A good resource for building a circle of help and care is http://www.sharethecare.org/.
- Be Aware of Depression
Depression can strike anyone and caregivers are especially vulnerable - it is the most common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your healthcare professional if you think you are becoming depressed. You do not have to live with depression.
- Value Yourself
Caregivers do amazing work in caring for their loved ones. Recognize the important and good job you are doing and realize how valuable you are. Caregiving is a never-ending job and perfection is an unrealistic goal. Do not allow the normal feelings of guilt and anger keep you from seeing the value of your daily caregiving.
- Manage Your Stress
Caregivers can strengthen their coping and stress management skills by communicating their feelings and needs, setting limits and making decisions to do things for themselves. Identify one or two people with whom you can speak freely about your needs and feelings. Professional counseling can be very beneficial for caregivers who are trying to not lose their own sense of self in the role as caregiver. It is appropriate to set limits and expectations with your loved one, family and friends. Physical exercise, creative activities, humor and social/family events are effective strategies for countering caregiver stress.
- Educate Yourself
Knowledge is empowering. Get as much information about ALS and caregiving as you can. The more you know, the better prepared you will be in proving care and support. Ask friends and relatives to help gather information and resources. Become an advocate for your loved one and for yourself.
- Know You Are More Than a Caregiver
In becoming a caregiver, some people experience a loss of the roles and relationships they had with their loved one before the illness. It is easy to see yourself as more a caregiver than wife/husband/parent or child. Identify ways to keep your personal and family roles and relationships alive. Talk about family events and news about children and grandchildren. Look at family photos together. Change the daily routines periodically like adding candles to the dinner table or putting on your favorite music. Making the effort to retain the relationship you have had with your loved one - aside from your role as caregiver will help you in coping with the multitude of changes family caregiving poses.
- Talk to Other Caregivers
Caregivers who share resources and their own personal experiences report less stress and fewer problems. Establish networks and support systems with other caregivers to share solutions to common problems and to talk with people who can understand first-hand what you are experiencing. Many of our chapters run caregiver support groups. You can also talk to other caregivers via online forums such as www.thefamilycaregiver.org and www.caregiver.com.
- Utilize Assistance Programs
Take advantage of local, state and federal programs that support and assist caregivers.
- Some states and local agencies provide financial support in the form of vouchers or cash for services and equipment.
- Military veterans with ALS may be eligible for Aide and attendance allowance.
- Many state and community agencies and non-profit organizations - such as The ALS Association and religious groups - offer respite services. Contact us to find out about respite programs.
- Some states offer tax credits and deductions for family caregivers.
- Employed caregivers may want to apply for unpaid Family and Medical Leave under the Federal program.
- A list of agencies can be found here: http://www.thefamilycaregiver.org/caregiving_resources/agencies_and_organizations.cfm
This page was updated 09/2019
Jobs Caregivers Can Share
Give a haircut
Do the laundry
Redecorate the patient's room
Take out the garbage
Give a pedicure/manicureDust
Take the patient for a drive
Feed the cat/dog
Balance the checkbook
Change the sheets
Give a massage
Bring some videos
Write a Christmas letter, photocopy, and mail it with the patient's Christmas cards
Give the patient's child a birthday party
Bring some fresh flowers
Write a poem
Transport children to or from school
"Be there" on Parents' Weekend at the patient's child's college
Fix the clocks with the correct time
Return books to the public library
Water the plants
Rake the lawn
Buy a cheery new bedspread
Find a terrific nurse's aide
Find someone to do the patient's taxes
Help with a shower or bath
Take the patient away for the weekend
Put up new curtains in the bathroom
Do the ironing
Vacuum the house
Help a child with college applications
Get the newspaper
Bake a cake
Give a back rub
Help color the patient's hair
Walk the dog
Pick up a package from the post office
Shovel snow from the driveway
Start the car when it's below freezing
Take pictures at a special event
Make a collage of family photos to hang on the wall
Visit in the hospital
Clean the bird cage
Go to the post office for stamps
Take the patient out for lunch
Offer to take the dog for the week
Help figure out how to handle a problem
Make a double-dip ice-cream cone
Fill in medical insurance forms ahead of time
Write a letter
Go to the dry cleaner or the drugstore
Make a nice fruit salad
Clean the bathroom
Get an eyeglass prescription filled
Take a daughter shopping for her prom dress
Take a son to camp
Take a daughter to her dance class every week
Buy a copy of your favorite bestseller
Clean out a closet
Take the patient to medical appointments
Find a podiatrist who/will make house calls
Help with putting on makeup
Take the patient's kids on vacation with your family
Watch a sports event with the patient
Program the VCR
Listen to a fellow group member let out some feelings
Leave the patient alone if asked to do so
Play some soothing music
Take the kids to their dentist or to a doctor's appointment
Send the patient's spouse on a weekend trip
Compliment another group member on a job well done
Take the patient for an astrology/psychic reading
Paint a picture or make an enlargement of a favorite photo
Celebrate a group member's birthday at the patient's home
Write and address thank-you notes
Take the patient to a dental appointment