A dementia diagnosis affects everyone; from the individual diagnosed, to their family and friends. But, it can particularly take a toll on a spouse, making it difficult to strengthen a relationship already going through so much change.
Fortunately, there are things you can do to support a couple with memory loss. Learn more about love and dementia.
Gilva Kaufmann has been married to her husband, George, for 30 years. But, in many ways, George isn’t the same person she said “I do” to all those years ago. In 2001, George was diagnosed with dementia and then a few years later, with Alzheimer’s disease.
“He’s here, but he’s not here,” Gilva says. “His doctor said he’s terminal… I can’t believe the doctor. It’s so painful.”
Couples like the Kaufmanns face immense changes and challenges when one partner develops dementia. Many have been together for decades, and their relationships have weathered the ups and downs of life. But as they grow older, dementia begins to chip away at the very things their relationship has been based upon.
Because dementia affects each individual differently, it’s impossible to make assumptions or generalities. From the beginning to end, a couple’s journey in dealing with dementia is completely unique to them and constantly changing. Every couple will navigate dementia — and the evolution of their relationship — in their own way.
However, there are certain issues that commonly arise when one partner in a relationship has dementia. For unaffected partners, and those who know and love the couple, being aware of these challenges is the first step in overcoming them.
As the partner with dementia becomes unable to carry out his or her usual tasks, the unaffected partner begins taking on extra responsibilities.
How You Can Help:
Encourage the unaffected partner to receive ongoing support where he or she is most comfortable, whether that means leaning on family members, turning to a church community or bringing in professional help. In order for a couple to maintain a relationship when dealing with the effects of dementia, some find it helpful to bring professionals into their homes, or to move into a supportive living facility, rather than have the unaffected partner become the sole nurse, housekeeper and personal caregiver.
For Gilva, the support she and George receive is invaluable. The couple enjoys regular visits from an MJHS nurse and social worker, as well as a music therapist and rabbi. Their friends and family also help out around the Kaufmann home and provide companionship for George and Gilva.
“Some friends of mine come here to help,” Gilva explained. “…My sister from Brazil called me the other day and talked to George. It meant a lot.”
The stress and demands of daily care negatively impact the health of the caregiving partner.
How You Can Help:
Remind the caregiver you’re concerned about not putting his or her own needs first, and offer to step in to provide respite care when you can. Caring for someone with dementia can be all-consuming, and many caregivers see their health, both mental and physical, suffer as a result. Offer to stop by and spend time with the affected person once or twice a week so that the other partner can take a break and attend to his or her own needs. During this time, the caregiver could run errands or go to appointments, attend a support group or do something enjoyable like see a movie. As Gilva notes, it’s important for caregivers to mind their own health and happiness if they hope to be effective in caring for their partners.
“I take care of myself a lot because [George] needs me,” Gilva explained. “He always took care of me and now I take care of him… The other day, I said goodnight to him and he [grabbed] my arm and said, ‘We stick together.'”
When one partner experiences personality changes, loses confidence in their abilities, or acts unpredictably as a result of dementia, both partners often start to withdraw from others.
How You Can Help:
Stay engaged — emotionally, physically, socially — and keep the couple involved as a part of your social group. Invite them to spend time with you and to mix with others just as you have in the past. Maintaining your relationship may require extra effort, but a commitment to connecting in any way you can will help provide a sense of stability in an uncertain time. Lend a listening ear and share resources for support when it makes sense. Most of all, when you interact, remember to help the couple stay positive.
As Gilva puts it, one of the best ways to cope with a dementia diagnosis is to simply “enjoy each moment.” She often shows George pictures and talks with him about memories they’ve shared.
“I remember the best times we had together,” she says.
For a couple affected by dementia, small actions from family and friends can have a big impact. Simple acts of kindness like providing respite for the caregiver and helping the couple look on the bright side can make all the difference.
Do you know a couple coping with memory loss? Please share their story with us in the comments below.