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What We’ve Learned as Caregivers to Loved Ones with Dementia and Alzheimer’s Disease
The authors live in Utah, USA.
Caregiving is one of the hardest challenges you might experience in life, but it can also be one of the most rewarding.
Photograph from Getty Images
When your loved one receives a diagnosis of dementia or Alzheimer’s, there is relief in having answers to why your loved one is experiencing difficult symptoms, but also devastation in realizing how such a diagnosis will reshape a lot of the future.
When we first began caring for loved ones with these diseases, both of us had so many questions.
How could we possibly handle this emotionally taxing situation for the duration of many years? How could we be effective caregivers when we had so many other things to juggle?
We know that people in similar situations have many questions, and as our years of caregiving have gone by, we have realized that few people know how demanding this role can be. Here is a little bit of background on both of our experiences:
Stephen: My wife, Kay, started having memory lapses over time, and I started noticing that she was often asking the same questions and repeating sentences. After things progressively got worse, we visited many doctors who gave many different diagnoses because she was young. She was eventually diagnosed with Alzheimer’s disease. I was her primary caregiver until she eventually passed away from complications of the disease. Later on, Lily and I met and got married. Lily also shared similar experiences in caring for her mother, who struggles with dementia.
Lily: My mother came to live with me about six years ago. After a while, she began behaving strangely. She made odd decisions like putting her clothes on backwards or inside out and not taking responsibility for her actions. After about two years and much frustration regarding her behavior, I went to the Lord in prayer and asked for the ability to understand her. I soon received the answer that she had dementia, and then a doctor officially confirmed this answer I received. Her experience has been a difficult road to navigate. But with the knowledge, experience, and patience Stephen has gained through caring for Kay, he and I have been able to work together to care for my mother effectively as her condition has worsened.
As we have both relied on the Savior in caring for our loved ones, we have been led to valuable resources and learned truths that have helped us in this particular challenge of mortality. We would love to share five tips we have learned over the years to help others in similar situations.
1. Turn to Heavenly Father and Jesus Christ
The first and most important truth about navigating this journey is that you are not alone. Heavenly Father and the Savior will always strengthen us as we turn to Them. There were times when Kay was struggling so much, and I (Stephen) was so exhausted. She didn’t know who I was for three years, and every day was painful. Sometimes I look back and wonder how I managed to get through those difficult times, and then I realize I was only able to endure the pain by fully relying on the Savior (see Matthew 11:28–29).
Always remember that Heavenly Father and Jesus Christ are very much aware of what you are going through. President Henry B. Eyring, Second Counselor in the First Presidency, reminded us of this truth: “You are being nourished and comforted by a loving Savior, who knows how to succor you in whatever tests you face.”1 Regularly make time for prayer and temple attendance, and invite the Spirit into your home. As you do, you will find guidance, peace, and the sustaining strength you need to keep moving forward.
2. Know That Hard Times Will Come
Seeing a loved one suffer and change from the effects of dementia or Alzheimer’s can bring feelings of grief and denial into your heart. You may also feel frustrated at how difficult and irrational these diseases can make your loved ones behave. You may experience stages of grieving—including grieving what your loved one is losing as their disease progresses—and you may struggle to accept what is happening.
Acceptance is one key to moving forward with hope in the eternal promises the Savior offers us. Participating in support groups and connecting with others in similar circumstances can help you learn to accept and cope with your challenges. And be patient with yourself as you go through this grieving process. It takes time.
If your loved one is declining because of their illness, remember that your relationship is still eternal and full of love. It’s been helpful for us to recognize that our loved ones’ eternal identity hasn’t changed, even though their body is sick and they are often difficult to care for.
For example, my mother’s dementia has progressed severely, but I (Lily) still see her pure love in the way she interacts with me; with her stuffed animals, which are a comfort to her; and with the other people who care for her. We believe that deep down, our loved ones are aware of the care we provide and the love we have for them, and also of the love they have for us.
President Russell M. Nelson graciously taught: “The sting of death is soothed by a steadfast faith in Christ, a perfect brightness of hope, a love of God and of all men, and a deep desire to serve them. That faith, that hope, that love will qualify us to come into God’s holy presence and, with our eternal companions and families, dwell with Him forever.”2
3. Reach Out for Help
As a caregiver, you might feel frustrated or a sense of wounded pride when you are struggling to handle all the demands that come with the role. Something that we had to accept when our loved ones’ symptoms worsened was that we weren’t going to be able to tend to all their needs alone. We both did have help from our families, but after many sleepless nights of changing bed linens multiple times (and realizing that I [Lily] couldn’t leave my mother alone anymore), we all knew we needed to let go of our guilt and turn to outside resources. Those resources included at-home care, day caretakers, memory care facilities, and doctors who specialized in the disease. We also attended support groups in the area for extra emotional support.
Admitting you need help isn’t something you should feel ashamed of. In fact, Elder Robert D. Hales (1932–2017) of the Quorum of the Twelve Apostles taught, “The disposition to ask assistance from others with confidence, and to grant it with kindness, should be part of our very nature.”3
4. Embrace the Refinement
Caregiving has been one of the most difficult experiences we have ever had, but also one of the most rewarding. We have seen so many miracles. There were moments when the right resources and people seemed to come out of nowhere exactly when we needed them. Moments when certain medications suddenly became available. Moments when, after an unbearable day, unexpected peace would wash over us. And one of the most beautiful miracles I (Stephen) experienced was watching tender tears fall down Kay’s cheeks as she departed from this world, finally at peace, and seemingly recalling things she hadn’t remembered in years.
As we have looked at our challenges with an eternal perspective, we have seen how much these experiences have taught and refined us. We have both learned what it truly means to emulate the Savior’s pure love, how to minister as He did. We have also learned patience and deepened our faith in the Savior through longsuffering. President Nelson said it best: “We can even give thanks for our trials, from which we learn the things we would not know otherwise.”4
5. Remember to Take Care of Yourself
Self-care is a priority and a necessity when you are a caregiver. It is not selfish, and you should not feel guilty about taking care of yourself. Make sure you are taking time to enjoy yourself, to get enough sleep, to exercise, and to meet your personal health and social needs. There are unfortunate statistics that show how many caregivers pass away before those they care for because their own health has been neglected.5
Your loved one will have many needs, but your needs are just as important, and there are many resources to help you find the right balance of caregiving and self-care. If you’re not taking care of yourself spiritually, emotionally, and physically, then you won’t be able to take care of anyone.
Elder Jeffrey R. Holland of the Quorum of the Twelve Apostles taught: “I have always been amazed that [the Savior] could sleep through a storm on the Sea of Galilee so serious and severe that His experienced fishermen disciples thought the ship was going down. How tired is that? … The caregivers have to have care too. You have to have fuel in the tank before you can give it to others.”6
We won’t always have all the answers to why we face specific challenges in mortality, but our personal experiences in caregiving have given us a glimpse of what it means to “press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men” (2 Nephi 31:20). As difficult as it can be to put our lives on hold to care for those we love, we can find peace in the Atonement of Jesus Christ. One day, our loved ones—and each of us—will be made whole again because of the Savior. And until that day comes, we can find joy in any circumstance as we continue to trust in Him.