Who are Caregivers?
A caregiver is someone who comes alongside a close family member or friend dealing with an illness or injury. It can be unexpected and might be for the long-term. A caregiver feels the call to help and support.
I felt privileged to be my mother’s primary caregiver and walk beside her as she traveled the dementia journey.
5 Habits – FAST!!
Accept – overcome denial
Develop Strategies – develop achievable strategies and end goal
Take on the Caregiver Role – sometimes means setting aside past relationships
Develop a Support Network – don’t go it alone – find your supportive helpers
Take Time for Yourself – take care of yourself & loved one—beware of burnout
Five Habits – Explained
Accept – Overcome Denial
We cannot begin to solve a problem until we overcome denial. It’s easy to overlook or rationalize away the probability of dementia or other neurological conditions. I did with my mother—I assumed her cognitive difficulties would lessen once she adjusted to living in Wisconsin with us—she just needed time. However, she had dementia.
Acceptance opens the door to finding solutions and next steps. Push for a diagnosis. Educate yourself on symptoms, treatments and the phases of the disease or syndrome. By the way—since everyone’s brain is unique—obtaining a diagnosis for neurological diseases can be challenging. Keep at it until you find a diagnosis that fits your loved one’s symptoms.
Once you have an idea of what the real problem is, likely progression and prognosis, consider how you can help. Our two sons had established families of their own so when Mom’s needs became apparent, I gladly offered to help. However, you might be in a good position to come alongside to support the primary caregiver.
Develop Strategies – Identify your End Goal
A strategy is a plan to reach a goal. Dig deeper into the specifics of treatment options and care needs. Develop goals – daily, quarterly, as well as the end game. They need to be reasonable, achievable and realistic. My goal for my mother was for her to finish well in the Lord—and she did.
You don’t have to chart every turn. Each person has their own unique set of symptoms; their journey will be their own – so be flexible and adaptable. When your loved one is in the earlier stages it can be hard to imagine that in the future, she might need the care of a residential facility. So, promise to support her and never abandon her, but don’t box yourself into specific promises—they might not be good options in the future.
Take on the Caregiver Role – Lay Aside Previous Roles
To be an effective caregiver we must set aside our former roles and past history with our loved one, and take on the caregiver role.
For example – during the years I home-schooled our two sons, I had to take on the role of teacher and set aside being mom—giving them the grades they earned, enforcing assignments and activities, and demanding they repeat lessons, if necessary. I was Teacher, not Mom.
Being able to rotate to caregiver helps us overcome the emotions that impair our caregiving or hinder necessary decision-making.
Keep the end goal in sight. Utilize creative, outside-the-box thinking to solve problems. Sometimes the best solutions are simple – such as driving around the block when she continues to say she wants to go home.
Ensure treatment solutions and decisions keep your needs in mind as well. Over-extending yourself, trying to provide care in areas where you are not the best fit can lead to burn-out or illness. Don’t be afraid to make decisions that work for you. We had every intention that Mom would live with us, but we eventually understood a nearby assisted living facility could provide better care in certain areas. This allowed me the time and energy to meet her needs in ways the staff could not.
In other words – see yourself as the executive manager marshaling the best resources for your loved one and yourself.
Develop a Support Network – Don’t Try to Do It All
Despite our desire to do it all – a caregiver must develop a support network. If you are providing care for your loved one at home, you will need help. No one can provide quality care 24/7 – day in day out, month in month out, year in year out.
Begin with family and friends. Assess your needs, consider their capabilities, ask for specific help and see who is able or willing to come alongside.
Some are so distressed by the situation or your loved one’s condition that they find it hard to help. We must guard against bitterness and let them go. Look for God to provide the right people at the right time. Those willing to help will reap the blessings. Be thankful for them.
Sometimes you just need a listening ear—those who are willing to hear about your daily trials and struggles. I received such support from my husband, the staff at Mom’s facility, as well as friends from work and church.
Take Time for Yourself – Avoid Burnout
Don’t forget to take time for yourself. Everyone needs some down-time. Try to get at least four hours to yourself on a regular basis. Consider family, friends, church members or community respite care alternatives. Check out day-care centers, respite services at residential facilities, in-home care providers, as well as people who know your loved one well. For example, a friend from church sat with her husband so she could attend the woman’s meetings.
Avoid burn-out. Some signs of burn-out are: not eating or sleeping properly, becoming short-tempered, or dreading each day. Seek out wise counselors and take action. You both need nurturing. Many find journaling helpful.
Dementia Caregiving from a Biblical Perspective: Your Guide for the Journey, by Dorothy Gable, 2019. Available online at: Amazon.com, BooksAMillion.com, ChristianBook.com, Barnes & Noble.com or WestBowPress.com.
General Books on Dementia
The 36-Hour Day: A Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss by Nancy L. Mace, MA and Peter V Rabins, MD, MPH
Books on Alzheimer’s Disease
Untangling Alzheimer’s: The Guide for Families and Professionals by Tam Cummings, Ph.D.
A Caregiver’s Guide to Alzheimer’s by Lela Knox Shanks
Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease by Jade C Angelica
Book for frontotemporal degeneration diseases
What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia Edited by Gary and Lisa Radin
Books on Lewy body dementia
Living with Lewy Body Dementia: One Caregiver’s Personal, In-depth Experience by Judy Town Jennings PT, MA
A Caregiver’s Guide to Lewy Body Dementia by Helen and James Whitworth
Welcome to the blog page for Biblical Dementia Caregiving. It is a resource to come alongside as you walk the dementia journey with your loved one. My name is Dorothy Gable and I wish to help, encourage and share the lessons we learned caring for my mother with dementia. For more of my story, please see the About page in this website.