Over time, the progression of ALS will impact a person’s ability to control their muscles, leading to an increasing need for help from family members or other caregivers. Studies have shown that around 80% of care given in the home comes from family members. Caregiving is a voluntary choice one makes from a place of love and devotion to the person with ALS and can be a source of great personal satisfaction and growth. One family member recently explained that she learned how to truly live in the moment through her husband’s disease.
The Impact on Family Caregivers
Caregiving can take an enormous emotional toll over time, and may impact the caregiver’s physical and psychological health. This can threaten their ability to continue providing care. Concern for the ALS patient often causes the caregiver to overlook her/his own needs for rest and proper eating, and time for themselves. After all, care is needed day and night, over weekends and holidays, and includes things like personal care, transportation to appointments, mobility in the home, help with pets, housework, or grocery shopping, and assisting with special equipment as the disease progresses.
Often family caregivers are also employed outside the home and have other responsibilities as well, including caring for other family members’ needs. The family caregiver, whether spouse, partner, parent, brother, sister or adult child, needs much support and acknowledgement in this journey.
Care for Caregivers
As a family caregiver it is important to pause occasionally and ask yourself, “What good will I be to the person I care for if I get sick?” It is critical for you to take good care of yourself—even while you are taking care of your loved one.
The Caregiver Action Network offers these ten tips for family caregivers:
- Seek support from other caregivers. You are not alone!
- Take care of your own health so that you can be strong enough to take care of your loved one.
- Accept offers of help and suggest specific things people can do to help you.
- Learn how to communicate effectively with doctors.
- Caregiving is hard work so take respite breaks often.
- Watch out for signs of depression and don't delay getting professional help when you need it.
- Be open to new technologies that can help you care for your loved one.
- Organize medical information so it's up to date and easy to find.
- Make sure legal documents are in order.
- Give yourself credit for doing the best you can in one of the toughest jobs there is!
There are resources ALS patients and their loved ones can turn to for support. Local churches may have programs for those in need of help, as well as community centers. In Central Arkansas there are organizations focused on helping people living with ALS including the ALS Association and ALS in Wonderland. There are also professional caregivers through local homecare agencies like Synergy HomeCare and others. These services can help ALS patients live with dignity at home and offer family caregivers much-needed respite.
No matter where people living with ALS and their families turn for support, the important thing is to accept help. You do not have to do this alone!
What You Can Do Now
May is ALS Awareness Month. Help raise awareness and understanding of this devastating disease. If possible, financially support local associations supporting Arkansans living with the disease. Our local walk to end ALS is currently scheduled for July 25 at War Memorial Stadium. Check out the ALS Association’s Arkansas Chapter Facebook page for details.
This article originally appeared in the May edition of Life in Chenal magazine. You can read it here.