More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. (Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009)
Caregiving for someone with ALS – while done with a great deal of love and devotion – often times exacts a great emotional and physical toll for the caregiver. Caregivers are often employed outside the home and may be the primary source of household income, which adds even more demands, responsibilities and stress.
Human nature drives us to offer a helping hand to those that we love when they are faced with a terminal illness. Ironically, also just as human, is the tendency for the caregiver to push that hand away because they view this responsibility as MY job and MY job alone or I SHOULD be able to do this by myself. However, Caregiver Burnout Research tells us that all caregivers, especially those caring for someone with ALS, need help.
During the holidays, the demands on families are greater, and so too is the demand on the caregiver’s time. So how can you help a friend or loved one who is a caregiver? What is the real answer to “How can I help?”
Don’t get discouraged when an immediate need or way to help can’t be identified. The answer to how can I help can easily become one more task to complete ~ oftentimes, the caregiver, struggles with identifying what help is needed to manage the changing roles in their family life – juggling, health, home, work, relationships, kids ~ that they just do it and not realize other people could help too.
- Be Proactive: Think about your loved ones life and daily routine and volunteer with a suggestion on how you can help – don’t ask how; tell how. Needs will change periodically, so evaluate your suggestions and make adjustments overtime.
- Be Consistent and Patient: Many people offer help just after a diagnosis, but just as time fades, so do intentions, especially if your own need to help is met quickly. It may take time for the caregiver to admit and accept help.
- Be Reliable: If you say you are going to do it, Do it! Caregivers need to trust that the task is handled so their focus can be on the relationship and emotional support with their loved one who has an illness.
- Be the Leader: Start a care connection team to recruit/manage other volunteers to help create schedules so that the caregiver knows who and what to expect when. Click here for a great online tool to help!
What are some things you might volunteer to do for your friend or loved one who is a caregiver? Here’s just an example:
Do the laundry
Take out the garbage
Give a pedicure/manicure
Take the patient for a drive
Feed the cat/dog
Change the sheets
Give a massage
Bring some videos
Write a holiday letter, photocopy, and mail it with the patient’s holiday cards
Bring some fresh flowers
Write a poem
Transport children to or from school
Water the plants
Rake the lawn
Buy a cheery new bedspread
You can find an entire list of tasks you might be able to tackle for a caregiver on our website.
Remember, the most important thing you can do for your friend or loved one who is a caregiver is to be present, listen, and remain connected. For more information on caregiving and preventing burnout, visit www.alsa-stl.org.