My Spouse With Dementia Doesn’t Know Me
By Pamela D. Wilson, MS, BS/BA, CG, CSA
My spouse with dementia doesn’t know me. “In sickness and in health, until death do us part” are words recited at marriage ceremonies with the expectation of a long happy marriage and golden retirement.
Years pass raising children, pursuing careers, and moving here and there. Children grow up and move out of the family home.
One day a surprising and unwelcome visitor, Alzheimer’s disease, shows up at the front door. The early stages of memory loss may not appear to be significant. Adult children go on with their lives while mom or dad, who is the healthy caregiver, sees worries increase.
The experiences of spousal caregivers of persons with dementia don’t receive as much attention as children who care for parents with dementia. Why?
Spousal caregivers feel a great duty to care for each other to the exclusion, in some cases, of involving adult children. The tragedy in many cases is that spousal caregivers eventually reach a breaking point where they can no longer provide care or are emotionally drained by caregiving.
At this point, adult children become caregivers for elderly parents with dementia. This article highlights the experiences of dedicated spousal caregivers and offers insights for adult children who may not yet be involved in the care of parents with dementia.
The Daily Life of Spousal Caregivers
The morning routine is the same. Spousal caregivers wake up to help with toileting and dressing. Breakfast is made for a husband or wife who, on some days, may not remember how to use silverware and must be fed.
A husband or wife may ask about the person providing care. The realization that my spouse with dementia doesn’t know me anymore becomes apparent when performing activities that make the caregiver feel more like a maid than a husband or wife.
The day passes uneventfully without leaving the house. The 24-hour clock starts again. Many devoted spousal caregivers go on like this year after year, decade after decade, while their health declines. Not all spouses possess this level of undying devotion.
The Duty of Caring for a Spouse With Dementia
Some spouses have a friend or a paid caregiver visit for a few hours each week to accommodate errands and trips to the grocery store. In these days of COVID, worry exists about going out and bringing health concerns into the home. Doctors may warn that COVID might result in complications that end the life of a spouse with dementia who may be frail.
Spousal caregivers feel stuck unable to live their lives in favor of caring for a husband or wife who is unable to care for themselves or make decisions about care. The feeling of having a spouse who is totally dependent for every need weighs heavy.
Creating a Back-Up Plan for a Caregiving Parent
In situations where one parent is a primary caregiver for a parent, it is important for children not to assume that this is a long-term solution. The healthy spousal caregiver may become ill or pass away before the spouse with dementia.
In this case, family discussions about legal planning specific to successors in a power of attorney document or how to get guardianship of a parent are critical. The reality of adult children eventually becoming more involved in the care of a parent is highly likely.
Spousal Caregivers: Long Days and Sleepless Nights
At night the glowing hand of the clock ticking on the nightstand moves slowly. Husbands and wives may listen for a spouse to get up out of bed and wander throughout the house or turn over to discover damp sheets that require changing. Sleep is elusive. Loneliness, worry, stress, and feelings of overwhelm become constant companions.
Add to these feelings an emptiness that the man or woman you love no longer knows who you are. He or she asks “who are you?” or says to your children “who is that old woman or man?” All you can think is my spouse with dementia doesn’t know me anymore. My life is over.
My Life is Over: My Spouse With Dementia Doesn’t Know Me
Spousal caregivers of husbands or wives with dementia can experience loneliness and depression when few outside connections or friendships remain. The responsibility of 24-hour care can become all-encompassing. The option to hire outside caregivers or other assistance may not be not possible due to financial constraints.
What happens when a husband or wife admits to the family that he or she can no longer care for a spouse with Alzheimer’s disease? Blame, guilt, and shame from family, children, friends, and acquaintances can be freely offered. “I would never put my husband (or wife) in a home—what are you thinking?” Mom (or dad) would never do that to you.”
On the other hand, adult children having witnessed the effects of caregiving may support placing a spouse with dementia in a care community. The realization that mom or dad, whose health is suffering, from the dedication of care can be eye-opening for children who admit they are unable to contribute time or money to the care situation.
Life Becomes Narrow for Spousal Caregivers
Until one becomes a caregiver it is impossible to understand the day-to-day joys, pressures, and struggles. Outsiders, who are non-caregivers, may be quick to judge and be critical of the decisions and actions of caregivers.
Friends continue their lives, rarely calling to chat because they don’t know what to say. Taking a spouse with dementia to activities outside of the home eventually becomes more work than pleasure. Longstanding friends may become embarrassed or uncomfortable by the changes they see in an old friend and may stop visiting.
Adult children may feel similar, not knowing how to talk to a parent with dementia. Watching a parent who managed the household, had a busy career, and who was active in the community who now needs help going to the bathroom can be a discomforting experience for children.
The Family Home Can Feel Like a Prison
Participation in social activities eventually ends to care for a husband or wife at home. Spousal caregivers may feel guilty about looking at a husband or wife who needs care as being more of an ongoing problem to deal with than a person. A home once enjoyed becomes a prison with few opportunities for outside escape.
Leaving the home can be challenging because of worries about another person being compassionate and kind to a husband or wife who may exhibit behaviors, repeat information, or pace back and forth nervously waiting for your return. A memory loss diagnosis places significant limits on life. Husbands and wives become prisoners in their own homes. Dreams of travel and time with friends during retirement years become a disappointing dream.
Who Is More Important?
How should a husband or wife react when realizing that my spouse with dementia doesn’t know me or believes you to be a friend, sister, or brother. Being gracious rather than correcting a spouse is the kind thing to do even though your heart may be breaking into a thousand pieces.
Caregivers ask is the marriage still a real marriage? Should the healthy spouse dedicate his or her life to caregiving and sacrifice what most would consider a normal life of friends, activities, and companionship? How should life go on for a husband or wife when realizing that my spouse with dementia doesn’t know me anymore?
Many spouses honor the commitment of “until death do us part” but acknowledge that a life of isolation is unrealistic. The realities of the isolation involved in care relationships created by Alzheimer’s disease are not commonly discussed.
Caring for a spouse with memory loss can change the dynamics of a marital relationship. The caregiving spouse may ask the question, whose life is more important? Caregivers struggle to answer how much of their lives should be sacrificed to care for a loved one whose care needs will only increase in time and complexity.
There are times when the difficult decision to divorce a spouse with Alzheimer’s or dementia becomes a financial practicality to protect the well-being and financial future of the healthy caregiving spouse. In many of these situations, the divorce is on paper allowing the spouse with dementia to be placed in a care community that provides services through Medicaid.
Companionship and Love Outside of Marriage
Many spouses honor the commitment of “until death do us part” but acknowledge that a life of isolation is impractical for many reasons including damage to emotional and physical health. Spouses who agreed to be faithful until the end may find love. Who is to say if this is cheating?
What if the healthy spouse finds a companion outside of the marriage—is that cheating if their spouse doesn’t recognize them to be a spouse? Some spouses pursue love relationships outside of marriage and remain committed to caring for their spouse with Alzheimer’s or dementia at home or living in a community.
Some husbands and wives establish new relationships outside of marriage. In some situations, the new partner provides caregiver support for the spouse with memory loss. These are unusual relationships that illustrate the capacity to love and care for others in very unexpected situations of finding new love late in life.
Spouses in Care Communities May Find Love
Even if the caregiving spouse does not stray from the commitment of marriage, a spouse with memory loss can find love with another resident if living in a care community. As you might imagine, these are delicate situations for care staff to manage especially if the relationship is discovered by a visiting spouse or adult child who is shocked by what they see.
Adult children can become upset when a parent with dementia living in a community finds a companion. Husbands or wives may visit and find their spouse sitting on the couch holding hands with a companion of the opposite sex. These relationships can happen when my spouse with dementia doesn’t know me or recognizes that a prior relationship existed.
Human affection that once occurred in the privacy of a home happens in the open areas of memory care communities with residents holding hands and kissing. This does not mean the relationship is sexual in nature.
Love is a Universal Need
The desire for human companionship and love is a universal need regardless of the stage of life or health. The pandemic that began in 2019 illustrates the challenges of being isolated that existed for many spousal and 24/7 caregivers. The elderly living alone were isolated prior to the pandemic.
Just as beauty is in the eye of the beholder, compassion should be in the hearts of family, children, and friends to support caregivers and the elderly when Alzheimer’s, the unwelcome visitor, arrives and tosses life upside down. It is impossible to imagine the journey of being a person diagnosed with memory loss, adult children caregivers, or spousal caregivers living in isolation.
Interested in More Articles Like My Spouse with Dementia Doesn’t Know Me? Listen to The Caring Generation Podcast called Spousal Resentment.