Community Views: Tips for New Caregivers
Last updated: March 2023
Finding yourself in the role of caregiver for a loved one with Alzheimer's is overwhelming. How do I do this? What do they need? What do I need? You do not know where to start. The job can feel immense.
To learn from those who have been where you are, we turned to the AlzheimersDisease.net Facebook page. There, we asked community members to tell us: "What are tips for new caregivers?"
The responses offer insights for helping your loved one and yourself.
The tip repeated by nearly everyone was practicing patience. Your loved one cannot help how they engage the world. They are not purposely being difficult. At the moment it can be difficult but important to remember.
"They are lost and confused inside their own brain. While it may be the 100th time telling them something, it feels like the first to them. Take a deep breath and say it for the 101st time."
"Patience, patience, and more patience will be needed to survive this journey."
"You must have patience, or things will be terrible every day."
"Be calm; things are weird, and every day is different."
Enter their reality
A loved one with Alzheimer's has a reality different from yours. It is easy to feel frustrated with their world. You want them to snap out of it, even while realizing they cannot. Accepting and entering your loved one's reality helps their mood. Accepting and not correcting your loved one keeps them calm.
"If there's a story they tell that really didn't happen, I've learned to go along with it."
"Try to go along with what they say or do unless there is a danger for them or someone else."
"Their reality is not your reality. Don't try to convince them that their reality is wrong."
You need help caring for your loved one. Trying to do it all yourself is a recipe for burnout. Find your local options for help. If friends offer to come to sit or run errands, let them. Learn about adult daycare or in-home care. Research memory care facilities in your area if or when you need them.
"Find some local resources to find respite care."
"Have someone in your corner who can provide guidance and mental encouragement for you."
"My motto always: Pick your team. When family or friends can't or don't help, pick your team. No one can do this alone, and placing a loved one in assisted living or care facilities isn't a failure on your part; rather, you're getting help."
You will feel incredibly drained caring for a loved one with Alzheimer's. One response likened it to having a newborn. Taking time away to rest and recharge is vital. Naps, walks, and conversations with trusted friends for venting are your lifeline. Use them regularly.
"Take care of yourself so you can give patience, compassion, kindness, and love!"
"Take time for yourself! I take a 1-hour walk every day to clear my mind."
"Give yourself some grace."
Take advantage of book and resource recommendations
Several of you shared your favorite resources with the community. These are the books, websites, and organizations that help you. Access the books through your favorite bookshop or your local library!
"'Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers' by Jolene Brackey."
"'My Two Elaines: Learning Coping, and Surviving as an Alzheimer’s Caregiver' by Martin J. Schreiber and Cathy Breitenbucher."
"'Visiting with Love: Productive Activities for Memory Care and Elder Care Residents' by E. Jane Wyatt."
"Teepa Snow's YouTube videos and articles online."
"Reach out to this group to get tips and to vent!"
We appreciate all the tips shared with the community. Having your wisdom for those just starting this journey is valuable.
Have you or your loved one been diagnosed with Mild cognitive impairment?