Intimacy, Marriage and Alzheimer's Disease
by Rich OBoyle, Publisher
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Talking about intimacy and sexuality is never easy, from the time we are youngsters until we are very old and wise. For some, sex is enjoyable, for others it is embarrassing and for others still it is frightening. Nevertheless, sex is part of our lives, and when combined with Alzheimers Disease, it can problematic.
It is important to distinguish the differences between intimacy and sexuality to better address the challenges created by dementia. Intimacy is a "warm friendship," while sexuality is the use of words, gestures, movements or activities that attempt to display physical affection. Sexual activity in healthy relationships helps people to stay in good physical condition and helps to reduce physical and psychological stress.
Dementias Impact on Sexual Relationships
Even the most confused individual affected by dementia is still a sexual being. Dementia does not mean just memory loss as the common perception. It is a form of brain damage that can affect many different aspects of consciousness, motor skills and executive function, in addition to memory. With respect to sexual behavior, your loving partner may no longer remember how to arouse and satisfy you; may develop impotence from blood pressure medications; may become hypersexual or unable to understand the consequences of his/her actions in public; may lose social skills and charisma; may lose self-esteem; or may engage in impulsive, thoughtless or indifferent behavior.
Your loved one may engage in sexual behavior such as public masturbation, undressing or inappropriate sexual advances. You should not feel responsible for these behaviors, they are the result of your loved ones brain disease and are not a reflection on you. Accusations of infidelity or hypersexuality may make you feel misunderstood and angry. Take time to reassess the situation. Is your loved one seeking reassurance or a boost in self-esteem? Is it simply a breakdown in judgement? Understanding the behaviors in these terms depersonalizes the impact.
Caregivers to loved ones with dementia, especially spouses, express many concerns.
Effectively coping with these changes in your relationship are essential. Start by doing things that reduce stress and enhance your self-esteem. Keeping a journal can help you to release your pent up feelings. Most importantly, develop a support system of peers who you can comfortably share your feeling and experiences. This may seem awkward at first however once you recognize that this is an issue, you can begin to grow from it. Many Alzheimers support groups have a mix of children caring for aging parents and spouses caring for their partner. Seek out individuals who are "most like you" to share a cup of coffee, ask the facilitator to raise the issue cautiously, suggest a guest speaker, or consult with a religious advisor or therapist.
Remember, that as a caregiver, you are not required to devote every ounce of energy to your loved one. It is essential to maintain your balance and minimize your stress level. It is OK to get angry sometimes (but not to get violent). Your emotions are natural, but the challenge is to address the in a healthy manner and grow from the experience.
Rediscovering Loving Relationships
A couples role and intimacy will undergo change (all relationships do over time). Even with the onset of dementia, there are still facets of your relationship that you can nurture. However strained and limited, you can still focus on these positive aspects of a relationship:
However you cope with the changes in your loving relationship, you may be able to find additional emotional support and relationships in friends and family, children, pets, and coworkers/volunteers.
The Power of Touch
All individuals, regardless of age or abilities, have the need for touch and love and the desire for companionship. Touch is a human need and personalizes caregiving. People respond to touch depending upon their upbringing and self-image. A touch can convey compassion, not just sexual interest. It can convey reassurance (as a gentle stroking of the forearm), safety (as an arm around the shoulder) or relaxation (as a shoulder massage) among other feelings.
So often we rely on the "miracles of modern medicine" and technological solutions to the stresses of aging and physical illness (and even spiritual/emotional losses). Most religions have traditions of the healing and curative powers of touch. These traditions can be interpreted as myth or fact. Yet even modern science recognizes the importance of human interaction and physical contact. Touching or massage can promote physiological responses such as decreased nervous tension, decreased muscle contractions, increased circulation, and decreased heart rate and blood pressure.
Ten years ago as I watched a good friend of mine die of AIDS. As Davids disease progressed he suffered from terribly disfiguring Kaposis sarcoma. People avoided him on the street and averted their eyes. In the days before he died, I made a conscious effort to face him as I spoke and rest my hand on his knee or shoulder when we sat together. At times this was not easy for me. I did not could not cure his disease. But I know that I made a difference in his frame of mind, especially given his own perception of himself as "untouchable."
When I volunteered as a Long-Term Care Ombudsman at a nursing home, I frequently found myself sitting and talking with residents. THEY reached out to touch me grasping my arm (sometimes bone-crunching!), tapping my knee and even kissing my hand. People in residential settings are not solely "patients" they need attention and affection more than ever before.
Caregivers have a great opportunity to enhance the well-being of their loved ones by being more conscious of the power that they hold in the fingertips. I have included a few additional examples:
How Are Others Coping?
Share your ideas, experiences and feelings with other caregivers in the ElderCare Forum
- Sexuality and the Alzheimers Patient, E.L. Ballard and C. Poer, Duke Family Support Program, Duke University Medical Center, 1993 (available from Duke $10.00 http://www.medicine.mc.duke.edu/adrc/papers.htm )- He Used to Be Somebody by Beverly Bigtree Murphy
- Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod
- The 36-Hour Day: A Family Guide to Caring for People With Alzheimer's Disease by Nancy Mace
Changes in Relationships (Alzheimers Association Pamphlet) http://www.alz.org/caregiver/guide/coping/changes.htm
Intimacy in Alzheimers (Baylor College of Medicine)
Source: This article has been developed from a
presentation at the World Alzheimers Congress on July 17, 2000 by Trudi Cholewinski,
MSG, Director of Programs NENY Chapter of the Alzheimers Association, and Rhenda
Campbell, RN, Nurse Manager, Fort Hudson Nursing Home.
Available from ElderCare Online www.ec-online.net ©2001 Prism Innovations, Inc.