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  • Writer's pictureDonna Marie Vuilleumier

Caregivers: Caring for Yourself While Caring for a Loved One

Caring for a loved one with dementia is a long and complicated road. It is a burden, a challenge, a joy, an evolving relationship, a time for insights and new understandings, frustration, and tears. Days drag on and months fly by. It is pain and it is privilege.

Whether with the support of family and friends, a faith community, support group, or professional counseling, it is healthy and essential to practice self-care. It can feel selfish to consider taking that break or impossible to find time for it. However, caring for yourself while caring for an ill loved one makes all the difference in the quality of care now, the ability to cope along the journey, and the legacy of the relationship when dementia has taken away even the last breath. Self-care adds energy, decreases stress, allows new perspectives, and enhances self-confidence.

 Caregiving comes from an inner place of love, compassion, and concern, that is willing to care for a loved one in a time of failing health and increasing needs. Self-care comes from an inner recognition of personal limits, needs, and other responsibilities.

There are three areas of self-care: spiritual, emotional, and physical, and each has its own practices and benefits. Together they are holistic reminders that being a caregiver is not about losing yourself along the way. Practicing care for yourself spiritually, emotionally, and physically is just as important and essential as it is to care for a loved one who is living with dementia.



Spiritual self-care can comfort the distress that comes from watching as a loved one slowly slips farther and farther away. Caregivers can journey alongside but cannot stop the disease’s progression, creating a struggle to understand the purpose of suffering. Questions about God and the sacred can lead to an inability to pray or trust in the Divine or a belief system. A once mutual loving relationship can feel one-sided.

Yet feeling connected to God, to a Higher Power, and to others, deepens life’s meaning and provides strength for the journey. It enables life in the present moment and compassion for one’s own self. It allows for acceptance and forgiveness of ourselves when the complexities and the stressors of the day threaten to overwhelm, and our responses get the better of us. Spiritual self-care deepens self-understanding and invites acceptance of the unknowable. This journey shared with a loved one may become a time of your own spiritual awakening through a renewed or deepened faith, through the growth of compassion and finding gratitude in simple things, or the discovery of the power of meditation or prayer.

Creating time for prayer, reflection, meditation, mindfulness, or devotionals, invites an openness to inspiration. Spending time in nature, experiencing the fullness of the weather, the shifting seasons of the natural world, the warmth of a sunny day, and the powerful thunder of a storm, resonate within our own range of feelings. Reading Scripture or inspirational literature welcomes us into the stories of our faith ancestors, and we learn and find comfort in their experiences. Their struggles, worries, prayers, hope, and need for encouragement resound within.

Just as your loved one will most likely experience a time of angry behaviors as they are aware that something is wrong, as a loving caregiver, you too will feel a range of negative emotions. Anger is natural as is the wail of grief as a once vibrant, active, healthy person becomes lost and disconnected. Anger may be expressed as resentment, insecurity, or frustration. To deny that honest aspect of the emotional well is to deny the truth of all that is happening and will gradually affect your care and later the legacy of this long good-bye.

Anger at God for the meaninglessness and ravages of the disease process are common spiritual concerns that arise. Many people hold a belief that God is responsible for all, that God is the source of all events—positive or negative, joyful or cruel. The God of love and life is also seen as the God who abandons and betrays. This perception may even be unconscious. For some, the teaching of their faith tradition has viewed anger toward or any questioning of God as unacceptable. This can leave caregivers and family members caught between the reality of their emotions and the beliefs of their faith community. Yet it is our very human nature to seek answers, reasons, understanding, and clarity. We are meaning-making people. Anger at God is not a lack of faith or a rejection of belief but rather a frustration and anguish with the situation that is not only associated with faith, it is an act of faith. The stories of our biblical ancestors include incidents of anger and doubt toward God. It is spiritually healthy to express that anger so that it can be cleansing and liberating, rather than sinking into apathy. Finding a way to express the anger, whether through conversation with a faith leader, chaplain, friend, or a support group, prayer, attending a worship service, journaling, or meditation, is cathartic. It is important to remind ourselves that questions like these are not a sign of disbelief or faithlessness. They acknowledge a faith that is alive and struggling.



Just as your attention as a caregiver for your loved one requires attentiveness to their emotional needs, self-care calls for attention to your own emotions. This attention is a barometer to sense when things are going at a pace at which you are able to care in ways that are positive and healthy for you and your loved one. This same barometer will allow you to see early on when the stressors are beginning to build so they can be tended to in a timely way. Be mindful of your inner experience: hear your own thoughts, attitude, feelings, perceptions, and beliefs. Awareness of growing stress and anxiety early on in a situation recognizes the need to stop for a time to rebalance, rather than just push on and persevere.

It may mean walking away from the moment and letting the attempted activity, such as a shower or a meal, wait and be approached in a few minutes. It may mean changing the approach strategy. Whatever action, or temporary inaction, is called for, it is far more manageable when it comes from a calmer, clearer-thinking self. It may mean reconsidering the current goals of caregiving. Time, even briefly, carved out for self-reflection can be both affirmations of the caregiving offered to your loved one as well as alerts that the stressors are building.

Emotional release can come from things that make you laugh as well as allowing yourself to cry. There will be moments that really can only be responded to with giggles or belly laughs, just as there are the tender, painful moments of grief and loss when tears will flow.

Caregiving can be isolating by the fullness of the day and exhaustion at night. Find and create ways to be with others, even by phone or through social media, if not in person. Time with other important people in your life matters.

Caregivers benefit from also being care receivers, from being on the receiving end of another’s attention, care, and touch. Perhaps this can mean having respite time and leaving your loved one in the care of another trusted person, or going for a long walk, going out to dinner to be waited on, or a time of pampering at a salon.

Rebel against the disease that is slowly taking away your loved one through participation in a local Walk to End Alzheimer’s, The Longest Day Fundraiser, participation in a Dementia Friendly community event, or attending a dementia caregivers’ support group, and becoming educated on the disease process. This rebellion is a healthy expression of anger and hope, brings connection to other caregiving families, and can offer some sense of meaning and purpose.

There are a variety of support groups for caregivers that can help to ease the emotional challenges, celebrate the good days, share education and caregiving tips, and be a community of connection and encouragement. There are support groups for caregivers in person and online, depending on which fits your situation best. Local senior centers, councils on aging, hospices, hospitals, Alzheimer’s Association area chapters, nursing homes, assisted living facilities, and faith communities, can direct you to local area groups.



Just as caregiving for a loved one is a constant and essential physical experience, so too is your own physical care. While it is common for caregivers to deny or neglect their own physical needs, you cannot continue to give from your own well when it is empty. Physical self-care provides the body’s strength for the journey. Caring for yourself is really caring for yourself and your loved one.

At the center of physical self-care is healthy eating, as everything relies on the inner vitality and body’s abilities. Healthy eating is a spiritual affirmation of your worth and effort on this long journey. Depending on dietary needs or restrictions, you and the loved one in your care may be eating the same foods, so that healthy eating is not an additional task in the day, but a mindful part of what you are already doing.

The physical tasks of caregiving naturally rely on physical strength. Being active, whether through going to the gym, running, swimming, walking, or participating in other physical activity that you enjoy, burns stress, tones muscles, increases endurance, and is an ally against diseases. Consistent activity releases hormones that impact almost every facet of human functioning.

Fun activities, such as singing, coloring, journaling, painting, reading, or playing a musical instrument, can be a private retreat or shared with others. Fun has a spiritual aspect as joy leads us out of our mental maze of self-judgement, doubts, worries, and insecurities. When caring for a loved one with dementia, there are many ways in which the joy in life is eclipsed, yet with time found, time created, for even the simplest interests, these bright moments are relaxing, pleasurable, and healing.

Rest and sleep balance the physical energetic parts of the day. Daytime mindfulness, attention, memory, judgement, and creativity are all influenced by the quality and quantity of sleep. This daily need for renewal is a spiritual act, as it requires letting go, giving up control, thus making us aware of our own needs and limitations.



May you offer yourself the same tender and loving quality care that you offer for your loved one.

As you nurture your soul, spirit, mind and body may you find strength, encouragement, rest, peace, and renewal.



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