Retired Supreme Court Justice Sandra Day O'Connor saw her husband, who suffered from Alzheimer's, fall in love with fellow Alzheimer's patient. O'Connor didn't become angry, but handled the situation with grace and care. While Alzheimer's robs people of their cognitive and reasoning abilities, it does not take away the basic need for relationships. And, the struggle to manage both being a spouse and caregiver presents a mixture of challenges and inspiration.
Hearing the word "intimacy'' can often make people uncomfortable, and many people do not like talking about it. Yet, it is an issue that surfaces in many ways in the journey of dementia, impacting relationships and adding challenges to the caregiving role.
For many of us intimacy means emotional and physical closeness. Emotional intimacy refers to our sense of commitment or connection, to our sense of caring for, having thoughts about and awareness of another. There is also the physical aspect to intimacy, which can range from gestures of affection to sexuality, all involving a sense of mutual interest and participation.
Intimacy and sexuality are basic human needs, not diminished with aging. Alzheimer's disease and other dementias do not just affect memory, but thinking, mood and behavior as well. Communication becomes affected with time, limiting the dialogue or conversations that we rely upon to create a sense of verbal intimacy and trust. While we can better understand how changes in the brain and the disease process can impact intimacy and sexuality for a person with dementia -- what can be said about the caregiver's needs or concerns?
As a spouse and caregiver, there is a looming realization that one day your partner may forget your name or face. What once may have been an equal partnership in love, friendship and family, can turn into a one-way caregiving relationship. Additionally, most caregivers must take on added roles to allow the family unit to function, becoming responsible for finances, home maintenance, and errands. And, the constant state of worry about your spouse's well-being can put many caregivers on edge as well as dampen feelings of sensuality towards one's partner.
Likewise, when adult children find themselves as primary caregivers of a parent with dementia, issues of intimacy can also arise. Many children grieve the loss of the parent/child relationship they have known as they now feel like the parent and not the child. If the parent is confused and misinterprets who the adult child is, particularly while giving personal care, the parent may talk or act in a more sensual way leaving the adult child feeling uncomfortable and embarrassed.
These developments can present a great sense of loss and grief with changing intimacy in the relationship. Others may feel anger or resentment. Many care partners find their own interest waning as their role becomes more involved and more tiring. However, talking about it with a doctor or other behavioral health professionals can help you gain perspective and find ways in which intimacy can be honored, allowing comfort on both sides.
Finding a way to hold sight of the positives in your relationship will help guide loving interactions, no matter how advanced the dementia is. Nurture those aspects through touch, through simple activities like singing, looking at photo albums and prayer. In those moments, you will also find comfort for yourself.
As many Alzheimer's patients go out of mind and out of sight, caregivers are the unsung heroes who help bring awareness to this devastating disease which takes a significant emotional and financial toll on families across the country. Whether you are a caregiver or not, sign up for the Alzheimer's Prevention Registry to be among like-minded individuals and do your part to help stop Alzheimer's before another generation is lost.