In early 2003, Eric and Gaye Reeves learned that Gaye had Alzheimer’s disease. In the wake of the diagnosis, Eric struggled to work full time while providing care for his wife at home.
“One day I came home, and she wouldn’t let me in,” he says. “She didn’t recognize me.”
The family tried to situate Gaye in an assisted living facility, but it quickly became apparent that she needed to move to a memory care unit. Challenges included liquidating the couple’s assets to afford care and getting Medicaid approval.
Living alone, Eric began to fall apart, he says.
“My daughter said I was on a downhill path,” he recalls. “I was out riding my motorcycle quite often — going out drinking. She just recognized it as eventually leading to a problem.”
About two years after Gaye went into the nursing home, Eric’s concerned children, as well as his mother-in-law, suggested an unorthodox solution: He should reach out and find companionship. For a long time he resisted, but he eventually opened up to the idea.
“As time progressed I admittedly was lonely and needed a partner of some sort,” he says.
Eric put a listing on Match.com and connected with a woman, Tami Haptonstall Blake, a registered nurse who would eventually become his second wife. At their initial Starbucks meeting, he explained his situation. Haptonstall Blake was understanding and, as the relationship developed, Haptonstall Blake accompanied Eric to nursing home visits and sometimes went on her own to read or sing to Gaye until her death in 2010.
Later that same year, Eric and Tami Reeves were married with “urgings and blessings from all family members,” he says.
[READ: Dementia Care Activities]
How Alzheimer’s Affects Relationships
The stress that can come from Alzheimer’s and relationships is one few understand, unless they’ve gone through it themselves. While some may argue that “’til death do us part” extends to chronic and terminal illness (and beyond), this may not be the case for caregivers who continue to provide support for spouses whose dementia or Alzheimer’s conditions progress.
They help. They care. They ache. They yearn. And over time, they may find themselves ready to explore a deeper physical or emotional connection with someone outside of their current relationship, whether their partner has passed on or is still experiencing symptoms of the disease.
And that’s okay.
Unfortunately, though, those going through situations like these rarely get that assurance. Loneliness as an Alzheimer’s and dementia caregiver is at an all-time high, affecting nearly half of the partner population. This strain, coupled with the risk of shock or frustration from family and other third parties at the prospect of a new connection or relationship, prompts many to keep their struggles silent.
This silence underscores the rhythms of frustration, fear and uncertainty that caretaking partners may experience on a daily basis.
[READ: New Treatments for Alzheimer’s Disease.]
Tips for Navigating Intimacy and Dating With an Alzheimer’s Diagnosis
Naturally, many caretakers wonder: When is the right time to pursue something new? Is it even socially acceptable to get into dating while married to someone with Alzheimer’s?
Experts support the fact that there is no real “timeline” to consider before pursuing relationships and connections that will fulfill either party in a relationship, despite how friends and family may feel.
“There’s no timeline that should be considered when it comes to establishing intimate relationships in these cases, whether it’s during the course of the current relationship or after,” says Kara Hoppe, a death doula and psychotherapist. “Grief is best metabolized in partnership, romantic or otherwise. It’s incredibly isolating. Lightening that load with a partnership or a special external relationship lightens the load for the caretaker, which could potentially allow them to function better in their role — barring individual benefits for themselves.”
This perspective further extends to relationships of all types, including physical ones.
“If someone is feeling a pull to get out and date or be physically intimate with another person either during or after the current partnership ends, I would support them in that individualized need,” Hoppe notes.
Here are four tips from experts for navigating love, intimacy and grief during the caregiving process:
[READ: How to Make Friends as an Adult]
1. Talk to your spouse about moving on
The first step is to have an open and honest conversation with your spouse or partner.
“An agreement may be helpful to secure in the early stages of diagnosis to go over the ‘rules of the road’ for dating, life and experiences during and after the disease progresses. This recommendation applies to all chronic, progressive or terminal diagnosis patients,” Hoppe says. ” These types of agreements aren’t uncommon, either, as couples broach conversations with caregiver burnout and relationships.”
Couples’ therapy would be the ideal setting to engage in this type of conversation, as both spouses or partners can speak freely with a neutral third-party mediator to assist them in sharing their wants and needs in a safe space.
“Many partners have agreed and encouraged the other surviving partner to have a ‘second act’ and chase their happiness after death occurs,” Hoppe says. “Every conversation I’ve been privy to in my prior practice has been incredibly eye-opening and intimately powerful for both the couples and family members alike.”
2. Join a support group
The importance of ongoing mental health support for the surviving partner can’t be understated, especially if they’re still grappling with loneliness as a dementia caregiver (or as a caregiver for any other condition).
“Some moments will be easier than others as the grief journey is traversed,” says Jeremy O’Conner, a licensed social worker and private practice counselor who specializes in grief and loss. “The emotions a person experiences can be compared to the ocean tide. When the tide comes in, it can overwhelm and flood us, and when the tide goes out it can feel hopeful. During the most painful times we may tend to try and avoid negative emotions. But just as a physical wound requires immediate attention and time to heal, so do our emotional wounds.”
Prolonged grief can turn into major depression, so it is important to pay attention to how you are feeling and whether the sadness worsens.
“Make sure to seek help through a mental health professional or physician if your depression worsens,” O’Conner says. “Feelings of hopelessness may lead to suicidal thoughts so work to protect yourself by surrounding yourself with other loved ones, friends or your faith community. Work on developing coping strategies to ease — not take away — the moments that are most difficult. This may be prayer, meditation or exercise.”
3. Engage in self-discovery and exploration
Learning how to regain personhood in the wake of caregiving for an extended period of time can be challenging.
Taking the time to get re-acquainted with yourself is a powerful step forward in acknowledging and moving through the grief, possibly allowing you to seek companionship and support more freely. While this looks different for everyone, many find value in activities like journaling or life counseling.
4. Don’t forget to “fill your cup” and pour into yourself
Self-care is important to consider before and after you seek companionship, as it allows you to have a more enriching experience as an individual and partner. Taking care of the needs that may have gone unaddressed as a caregiver is an often overlooked step in the healing process, and often takes the form of spiritual, emotional, mental and physical enrichment.
Those walking through the process of caregiving who are also considering companionship should take an inventory of needs to determine what’s needed to do this effectively.
[SEE: 12 Ways to Help a Loved One Grieve.]
Bottom Line
While seeking companionship as a caregiver, communication is key — both during and after the diagnosis is given. It ensures that they remain respected and in the loop with decisions that caregivers may make, both presently and in the future. Couples and family members alike generally benefit from couples’ therapy to communicate feelings and expectations around partnership and companionship, whether it’s intimate in nature or not.
Ultimately, caregivers should feel the freedom to meet their needs in whatever way works for them, in the timeline that works best for them. It’s common to yield needs while caring for someone who is experiencing Alzheimer’s or another form of dementia. However, the burden on the caregiver and support network can be lightened with companionship that’s mutually beneficial and agreed upon for both the caregiver and patient.
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When the Partners of Alzheimer’s Patients Seek Other Companionship originally appeared on usnews.com
