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
Our fears, insecurities, or the uncomfortable factor can dampen our resolve to visit our loved ones with dementia. However, two well-known reactions can stop us cold, causing us to miss out on precious moments with them.
The best-known obstacles are fear they will not recognize who we are to them, and the nagging feeling it won’t be of any benefit since they’ll forget our visit soon after.
Not Being Recognized: Why would a close family member or friend with dementia not recognize us? This reaction is common with people having Alzheimer’s type dementia. These diseases impair their ability to connect your face with the declarative memory of who you are to them. At the same time their emotional memory is enhanced, helping them to respond as if they do recognize us.
Years ago, a friend shared her experience as a young woman while visiting her grandmother in a nursing home. As she was saying good bye, her grandmother expressed how much she enjoyed the visit and wanted to know who she was. She was so deeply offended she never visited her grandmother again.
At the time I also had many questions and did not have a good explanation for her grandmother’s reaction.
During visits with my mother she would often ask, “Did I marry? Did I have children?” I always hugged her, held her hand, and said, “Yes, Mom. You married. You had four daughters and I am your daughter. You were a wonderful mother.” She would smile, nod with relief in her eyes and say, “I thought so.”
If your loved one asks you who you are, don’t be offended—it really is a compliment. Your visit was so important they want to know who you are. Help out, be memory for your loved one, and answer the question.
Forgetting the Visit: While trying to help a family member schedule the best time to visit Mom, she asked, “What’s the point if she’s going to forget anyway?” This is a common and justifiable fear. We all know those with dementia who accuse loved ones of never visiting even though they come faithfully every day. I didn’t have a good answer for her, but did encourage her to visit Mom.
Years later, while reviewing journal articles for dementia care I read about a study done at Iowa City. The researchers measured the emotional mood of people with dementia before, during, and after a happy event. They observed joy from the activity persisted past their memory of it. Even if they could not say why they were happy, they still knew they were happy.
Rest assured, if your loved one forgets the declarative memories of your visit, the happiness you gave will remain long after your time there. You can make a difference with a simple visit. If your loved one accuses you of never visiting, don’t argue, smile, and let her know how happy you are to be visiting with her.
While it can seem our loved one will linger a long time with these slow-moving diseases, today is the day we have to give and receive love. She might not have tomorrow. After a busy day at work, I would stop by to see my mother. Some days, those were the most restful parts of my day as I sat with her and experienced moments with her.
While presenting the stages of dementia this November at Oak Park Place, I drew from family happenings as we celebrated Christmas with my mother.
In the early stages she participated in all holiday celebrations--giving and receiving presents, reveling in the family gatherings. Often four generations were present.
During the middle stages Mom did better with smaller, quieter groups. At family Christmas gatherings Mom often let the conversations flow around her and only had eyes for the young great-grandchildren as they played and opened presents.
One year my sister brought her two angels. I also had purchased a trio of small ceramic angels that glowed red, green and blue for the grand-kids to play with. Mom latched onto my ceramic angels and demanded I give them to her.
At first, I resisted--after all, she was in her 80's and should have been beyond having to have what caught her eye. At that time, I had little comprehension of how dementia had affected my mother, but I quickly realized if it made her happy, that was the important point. After the season Mom's angels were boxed up with her other Christmas decorations.
During the last year of her life I brought her Christmas box to Sienna Crest shortly after Thanksgiving. When she was not in her room, I set out the decorations: a mini-manger scene snow globe; foot tall Christmas tree with ribbons and her angel collection. Once the room was ready and the ceramic angels were glowing red, green, and blue, I set about finding where she could be.
Mom was in the back living room with several other residents watching a classic movie. I knew she could not really hear the words with her hearing aids long gone and encouraged her to walk to her room. As we walked there at her slow pace, I anticipated her delight at seeing her room decorated for Christmas.
She entered the room and headed straight for her recliner. Looking exhausted, she perched on the edge of the chair and stared. "Mom," I said, "look, it's Christmas." I pointed out her manger scene and swept my arms past the angels on her bookcase and the ceramic angels on her nightstand.
Mom's eyes tracked my movements. Her face remained a rigid mask (common in the later stages) and rested on me. "That's nice," she said flatly.
I sat on the bed demoralized and in despair, not understanding the concept of Christmas had become too abstract for my mother to grasp. I recalled she had been slowly decoupling herself from the world--visiting her favorite restaurants confused and upset her, and she had lost all interest in shopping and attending church.
When our loved ones cannot relate to Christmas we know, more than ever, God is holding them in his hands. That day I sensed she was not lost; God was with her. She loved Jesus and I knew he would never let her go. This had to be good enough for me.
Our grief ekes out, little by little, with small happenings as the life we used to share with them morphs and changes. She was still my mother, but I knew I had to reach her in her world--she could no longer join me in mine. Each loss we accept is another step to releasing our loved one to God. When they pass on we know we will join them again one day.
It had been a few weeks since I had been able to attend my favorite workout class and I struck up a conversation with the lady next to me. After I mentioned my book on dementia caregiving, she shared how guilty her friend felt for helping her mom move to a facility.
I tried to encourage her—moving into the right assisted living facility was the best solution for my mother. Outgoing and gregarious, she blossomed in the welcoming community of her peers. She always had people to talk with. We visited her regularly, took her for family get-togethers and other adventures.
But I would still feel guilty. After all, wasn’t I supposed to care for her at home? When she threw her back out and the staff knew how to help her, I realized this was the right decision. As her daughter, I could take her places, keep her company and bring her treats. We shopped together or I took her list to the store and made the purchases. But I learned there were many things they were better qualified and I could not duplicate the nurturing community the facility could provide.
As her primary caregiver I worked with the staff to make she was getting the care she needed. If we can see ourselves as executive managers, securing the best resources for our loved ones, decisions about facilities become part of the equation.
In the beginning we can hardly imagine our loved one would not remember her husband had died, would not know how to find the bathroom or get dressed, become disconnected to time and wander day and night. Our homes might, or might not, be the best place for our loved ones. This is a hard decision, but we have to take into account what is best for our loved ones and ourselves.
So, if you have helped your loved one move to a facility and you feel guilty, recall the reasons for the decision and work the day’s problems. We need to forgive ourselves and focus our emotional energy on taking care of our loved ones as well as ourselves.
The day Mom was crying because her back hurt and all my attempts to help made it worse, I learned there were skill sets I didn’t have. When the aide moved her to a pain-free position within seconds, it felt like God told me—it’s OK. This is the best place for her. Over the years I valued and learned many things from the staff. Over time, as her difficulties increased, I knew she was in the best place for her. They were able to care for her through to the late, end-stage.
Visiting - Seeing the Value & Overcoming Obstacles
“Why visit Grandma if she’s not going to remember anyway?” my daughter-in-law asked me. At the time, I hadn’t found many answers and probably mumbled it would help anyway. Mom loved watching their little children play.
Now I know research has shown while a person with dementia might not remember the reason for her joy after a visit, the emotional lift and well-being persisted through the day. So, if we can visit and bring joy and happiness to a loved one with dementia—it doesn’t matter if they are not going to remember to give us the credit.
There is value in visiting—but we might be afraid we won’t know how to act or what to say. Just relax. Try to see with her eyes and enjoy the challenge of rolling with whatever happens. If your loved one has slipped into her own world, try to join her in it. When I entered Sienna Crest to visit Mom, I would picture Alice in Wonderland as I opened the door. I reminded myself I was entering her world and prayed for guidance.
Another major obstacle is the offense of not being recognized or known. One woman shared she had visited her grandmother in a nursing home and had a wonderful visit. However, at the end, her grandma asked her who she was. Believing the visit had been a waste of time, she never visited her grandmother again. I did not know what to tell her—so stated this was a fairly common occurrence. At the time I did not understand why my mom would ask similar questions.
The brain is a marvelous supercomputer. Our loved ones with Alzheimer’s struggle to connect facts and data with events and daily life. However, their ability to perceive emotions and respond to them is enhanced.
With their emotional intelligence they know we are important to them, but they can’t recall our name or comprehend the family relationship. So, they reach out for help. Instead of being offended, let us be encouraged. Our visit was important enough for our loved one to ask who we are to her.
At end of many visits Mom would ask, “Did I marry? Did I have children?” I would hug her and say, “Yes, Mom. You married. You had four daughters and I am your daughter. You were a wonderful mother.” With relief in her eyes, she would say, “I thought so.”
So—visit, even if your loved one cannot recall your name. If she responds well to you and you feel led to visit, do so.
And don't forget Galatians 6:9--“And let us not grow weary of doing good, for in due season we will reap, if we do not give up.” ESV
1. Keep your eyes on Jesus. My favorite verse and first one I learned shortly after I became a Christian was Philippians 4:76-7 “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding will guard you hearts and your minds in Christ Jesus.” ESV.
Worry runs in the family, but that is no excuse. Worry keeps us from focusing on Christ—the solution. It’s not easy, but it’s the first step. We have to trust God’s in control and will make a way for us, but we first have to be listening.
2. Be thankful—What? I thought in the beginning. That’s not being honest, but I am working on being thankful, even when bad things happen. It’s all part of the equation. We can be thankful in and for the Lord. Sometimes we can see a silver lining, but we can’t always expect to have things work out the way we wanted them to. In some of my greatest difficulties God showed up with the perfect solution—one I had never imagined or considered.
You can be thankful for the opportunity to walk the dementia journey with your loved one. For me, it was time with my mother even if she was different. While the mother I remembered did not come to live with us, she was still my mother. I had a chance to experience different facets of her personality, giving and receiving love in new ways.
3. Pray fervently. Supplications are deep stirring beseeching, begging prayers. God wants us to ask. We can’t hide it anyway. So ask and wait. (One of my other favorite passages is Psalm 37 – trust, delight, commit, rest and wait and He will give you the desires of your heart).
Some have found journaling their difficulties to the Lord very helpful. One woman discovered inspiration for pressing problems. With dementia it can seem we are living in an Alice in Wonderland existence where we have to enter into the world of our loved one to reach them. It can be exhausting, frustrating, but also challenging and sometimes funny. Check out Judy Towne-Jennings book, Living with Lewy Body Dementia.
So, don’t turn away from ‘crazy ideas’ that just might be the solution to help your loved one get through his day.
4. Ask for help. Find a support network—including people willing to listen to your daily ‘adventures.’ My husband patiently listened to my stories about Mom. Hearing that you are not alone, your loved one is not from Mars, but others are also going through exactly what you are experiencing sometimes is a huge help.
But refuse to load yourself with the burdens of bitterness or anger. If those who should help, do not, let them go. In the end, they will be the ones missing out.
5. Guard your own health. A burned out caregiver eventually will not be able to provide care. It’s not selfish to take time for yourself.
Remember. This is for a season and Jesus has overcome the world.
For more information - check out my book - Dementia Caregiving from a Biblical Perspective: Your Guide for the Journey available online at Amazon, ChristianBooks, Barnes & Noble, and Books-A-Million.
When our loved one with dementia asks the same question or tells the same story over and over, or fails to recognize us, we have a hard time responding in love.
Repeat conversations can be hard to bear, but for our loved one, this is the first time. If we can focus on her world and not ours, if we can remember to answer a question or listen to a story as if it was the first time, we can stay calm and blame the disease.
I cannot imagine what a brain with dementia feels like. I do know what severe migraines feel like and marvel my mother could function as well as she did. I tried to move the conversation along, but some days, we had many practice sessions.
If a loved one with dementia develops a tic or repetitive motion, this might be calming and soothing. If we can understand our loved one shredding rubber bands or tearing paper into bits helps her stay calm, we can as well. As long as no harm is done and she is safe--that is the goal.
Our loved ones with Alzheimer's type diseases have a difficult time accessing their information areas. During the last years of my mother's life we would have a great visit and toward the end she would ask, "Did I marry? Did I have children?" Remember she always greeted me with, "I am so glad you are here." Did she not know me? Had she forgotten? In some sense she had.
Her cognitive mind could no longer access my name or how I was related to her, but her emotional mind knew I was safe and we belonged together.
I always smiled and said, "Yes, Mom. You married, had four daughters and I am one of them. You were a wonderful mother." She would smile, nod her head and say, "I thought so," with relief in her eyes. I wiped the tears from mine. Soon after I would escort her to the dining room and kiss her goodbye.
If your loved one, at the end of a visit, asks you who you are--do not get offended. She is trying to place you in her world and give context to your wonderful visit. Smile and tell her how important she is to you.
We can make a difference in the life of our loved one.
There is no cure for the diseases that cause dementia. Few medical therapies are effective in slowing or stopping dementia's advance.
However, loving, nurturing care has been proven to help. The care you can bring to your loved one does help her be all she can be that day.
If you feel God calling you to come alongside your loved one, fear not. He will never leave you or forsake you. You could be the very answer to prayers for your loved one's daily needs.
Christ came that we might have life—abundant, full to overflowing life.
This did not stop when we embarked on our dementia journey. Life continues through it.
The sun shines, the flowers bloom, the robin returns, the grass grows. In the midst of our struggles to care for our loved one with dementia, we live.
How do we turn the corner to living with the constant troubles and battles?
“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
“And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.” Colossians 3:15
Rejoice always, pray without ceasing, give thanks in all circumstances for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-17
When we offer the sacrifice of praise, lifting our hearts in thanksgiving to our creator, we submit to His will and His way. The way of hope, life and peace comes from Him.
We ask for wisdom in how to answer our loved one when she is distressed; seek His guidance for ideas to help her dress or take a bath. With God’s help, we reach past the dementia to our loved one—touching her soul; giving and receiving love.
And in the midst of the day’s journey, we stop to admire a furry caterpillar crossing the side walk, watch the children play soccer in a field, gaze at the dancing leaves swinging in the breeze, and feel the warmth of the sun on our face.
When we can push aside the cares, the weight of schedules, and busy tasks to be with our loved one, we will live the journey with her. We focus on the moment and where she is. We enter her world, as much as possible, being with her in it.
Let us not miss the life in the journey. It holds hidden joys and moments of love.
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.