The author’s husband took this photo of his wife, Barbara Hinther, with her horse Pete. Barbara’s spouse suffered from Lewy Body Dementia.
By Barbara Hinther
When you cross deep rivers, I will be with you, and you won’t drown. When you walk through fire, you won’t be burned or scorched by the flames. I am the Lord, your God, the Holy One of Israel, the God who saves you. – Isaiah 43:2-3
Everywhere are 12-step programs for alcohol, drugs, co-dependence, gambling and more, but I used the 12-steps, especially the first three, to cope with my husband’s Lewy Body Dementia. The 12-steps are based on a spiritual program and complement the Scriptures very well, especially when coping with a terminal disease like dementia. I used the 12-step program and some of its suggestions to navigate this darkness. Some examples include:
- Admitted we were powerless over alcohol and that our lives have become unmanageable.I substituted the word “alcohol” with the frightening word “dementia”. We are powerless. Dementia does make life very unmanageable. God is with us.
- Came to believe that a Power (I inserted God) greater than ourselves could restore us to sanity.The dementia caregiver doubts their own sanity while navigating this horrible and terminal illness, especially at the end of the journey.
- Made a decision to turn our will and our lives over to the care of God as we understand Him. This is very difficult! My will was to have a healthy and present spouse. God’s will is never for harm. Our enemy’s is. The enemy has been called the Father of Lies and a murderer. Faith will be tested. This is the heartbreak of living in a fallen world.
Notice that these first three steps are about you, your emotional, physical and spiritual health first and foremost. It must be. Your loved one needs a healthy caregiver. As has been said on countless airplanes before departure: put YOUR oxygen mask on first. These first three steps give us a foundation and faith to cope.
Caring for your loved one with dementia, like the 12-step program, is a one-day-at-a-time process. Again, it must be. We must live in the present. There is a popular book called the “36-Hour Day”, which describes the practical challenges of dementia caregiving. Our days are 36 hours or more.
The financial worries, the decision to commit your loved one to a care home or hospice, the midnight crises are too much to take on alone. God walks with you. You can’t always feel His presence, but He’s there. God cares for you, so turn all your worries over to him (1 Peter 5:7).
The 12-step program also stresses outside help. With the lock-downs and isolation due to the coronavirus, help is still available. You may contact your local Office on Aging, hospital or care home social worker, websites and online blogs. I visited many dementia blogs and websites in the middle of the night and would receive love and support from other dementia caregivers from all over the world. Did it fix the situation? No. However, we can keep going knowing we are loved and we’re not alone.
But you will be alone more than you realize. Your friends and family may feel awkward and even afraid of your loved one’s illness. They don’t want to acknowledge that in this fallen world, this could happen to them. It has nothing to do with you. Don’t take it on. Enlist their help. They’ll feel relieved and glad to support in the way that they can. For instance, they can pick up prescriptions or groceries. Mow the lawn. Babysit your loved one so you can take a well-deserved nap. Pick up some takeout. Provide transportation to the doctor.
Ask a trusted, nonjudgmental friend to just listen to you. Not fix the situation. They can’t. They can be a companion in your dementia journey. They may not know what to say. That’s okay. Sharing your experience and feelings helps educate our communities, churches and synagogues. It reminds the community just how lonely caregiving is. They, too, may be there someday. Telling your story shines a light on the unique and stressful challenges of being a caregiver. I had an older, faithful dog that listened and comforted too. Don’t discount the help of a faithful pet.
Local churches are willing to help. Fear of being overcome by well-meaning converts may make you hesitate. Choose a faith/church you are somewhat familiar with.
Keep a journal. You may share it someday with another caregiver. The best healers are wounded healers. Our Savior was wounded for our sake and can relate to your suffering.
You will be on alert. Frazzled. PTSD-like. Tempted to drink too much, shop too much, eat too much and more. Anything for immediate relief. When you do, forgive yourself, love yourself, have compassion for yourself and pray.
Forgive, when you are able, those that abandon you. It happens. That’s another unforeseen challenge that happens to the caregiver. You don’t want to add resentment to your trial.
The Serenity Prayer is another help I used, courtesy of the 12-step program. I used it daily and sometimes hourly.
God, grant me the serenity to accept the things I cannot change, the courage (and it takes lots of courage) to change the things I can and the wisdom to know the difference.
Until there is a cure, my heart and prayers are with you, fellow caregivers.
Barbara Hinther is the author of “Meditations and Encouragement for the Caregiver of a Loved One With Dementia.” She may be reached at firstname.lastname@example.org.