By Mary Z. McGrath, Ph.D.
Josh and Jen embodied the ideal of a happy and inseparable pair. They married young and brought three children into the world. As the years went by, this solidly-connected couple enjoyed playing bridge with friends, bowling and collecting antiques together. Eventually, Josh noticed that Jen’s depth perception seemed to be affecting her driving. She had had a few close calls, yet her eye doctor could not quite explain the problem. She began having difficulty keeping pace during their group bridge games. In addition, she shared with her husband over dinner with great embarrassment that she had seen a cartoon character standing before her in the hallway that morning. Eventually she was diagnosed with Lewy body dementia.
Sandi and Kevin had been married for 41 years. For the last three of those years, Kevin had been moving through the many changes and challenges of LBD. Sandi rose to each occasion of change and loss. The time came when Kevin could no longer volunteer at the neighborhood public school because he would become disoriented in the many similar-looking hallways. Next, he gave up using his laptop computer because using the keyboard became too difficult for him to use. Hiking on rocky and irregular trails challenged his ability to maintain balance. Sandi soon noticed that he could no longer pay the bills at the corner café they so enjoyed because it was too complex to manage the cash. Phone calls to their son in another state became difficult because Kevin could not maintain a suitable volume for the phone. At the same time, Sandi was experiencing a succession of significant losses due to LBD.
Kitt and Jack, an active senior couple who loved tennis and travel, learned relatively early of his LBD diagnosis. When Jack could no longer adequately manage personal grooming, Kitt hired a home care aid to help. This man who so loved to get out on the golf course early on summer mornings was eventually confined to a wheelchair. After a time, Kitt found it difficult to help with transfers due to her chronic back problems. Jack developed additional difficulties, including problems swallowing and respiratory issues. Their gerontologist finally suggested that it was time to move Jack to a long-term care facility with ready medical access.
Kitt had to learn to live on her own, a big adjustment after living with Jack for 49 years. He looked forward to her frequent visits. Over time, he became less able to maintain his attention. Kitt loved to tell him all the latest news. One Sunday night their daughter called to report that their high school grandson had won a golf trophy. She knew Jack would be proud and could not wait to share the news. When she arrived at the care center, Jack looked happily at her as she began her account of their daughter’s phone call. Two sentences into the conversation, Jack’s eye’s closed and he drifted off — Kitt would have to wait to give him the good news about their grandson. Disheartened, she picked up a magazine to occupy her time until Jack’s attention returned.
These fictitious scenarios are examples of caregivers experiencing the gradual losses of function and consequently, the lifestyle and fullness of connection couples once knew before the onset of Lewy body dementia. Activities, plans and household duties all tip in a new direction. Imbalance, role changes, and uncertainty govern the lives of couples dealing with this difficult disease.
Here are seven suggestions for keeping connected and “nearer normal” during the progression of the Lewy body dementia:
- Make it a priority to keep life as similar and familiar as possible. Considering the routines and rhythms of life that were standard before LBD, one can be creative about how to keep these patterns going. For example, if a couple has made it a priority to take a weekly walk, it could mean changing the location to avoid shiny mall floors that can create visual disorientation, or taking a bus with a lift in order to venture together down a park path that is wheelchair-accessible. The caregiver may keep up the routine by going solo with the partner in mind, taking in the sights, smells and sounds to share later. A routine activity does not have to be forfeited, just modified.
- Make use of communication technology to stay connected. Investing in an adapted telephone, a device to enhance and enlarge print or a simpler remote for ready access to a favorite person, publication or program can make a huge difference in maintaining connections. This will keep the person with LBD more on par with his/her partner. Couples can still share plenty of good times, just as before the disease disrupted the spontaneity of life.
- Acknowledge feelings of loneliness, sadness and emptiness. LBD takes away dimensions of personality and language, facets of physical function and aspects of intimacy and connection. Unfortunately, when it forces changes in a couple’s life and living situation the grief becomes an uninvited part of the emotional life of both the LBD caregiver and care receiver. After placement in a care facility, a favorite chair, figurine given for a birthday, or areas in the home and yard frequented by the absent spouse cannot be ignored. Even if the person can come home for a few hours or even a few days, nothing will be quite the same for a couple separated due to a chronic illness such as LBD. The best option for both is then to fully acknowledge “missing the other soooo much!” It is also legitimate to mourn the loss of skills and aspects of personality that have been usurped by this illness. It is only natural to feel the loss of a companion. Both can expect such emotions to ebb and flow throughout the ups and downs of an illness and throughout the progression of this disease.
- Use your time apart for personal development and spiritual growth. It is important for the person living in a care center to participate and engage in activities, therapies and functions there as appropriate. For the spouse who lives at home, taking a class to enhance a hobby or deepening an intellectual interest is very healthy. Working out with a trainer or finding a support group are good ways to find balance and encouragement. Joining a church-sponsored study or prayer group opens the caregiver to spiritual strength and steadiness needed for the unpredictability of the LBD journey.
- Seek the support of family, friends and community. Some pain and perspective can be shared selectively with a close friend, therapist, support group or pastor. It can feel frustrating and lonely when the spouse with LBD is no longer as available at the same times or level as in the past. Thoughts, insights, and feelings can be collected for a later time, stored in a journal or turned over as part of one’s spirituality. It is important to validate one’s thoughts, ideas, ideals, dreams and love for this person with LBD in heartfelt language and actions of care, compassion and kindness.
- Celebrate occasions and events in adapted ways. Some people follow the standard social formulas. They may celebrate their anniversaries and birthdays right on or near the exact day with a party. When LBD is in the mix, a caregiver may celebrate with the spouse by asking friends to send a singing card to add dimension to and make a “big deal” of each special occasion. Another option is to save all anniversary or birthday cards for a time when the person is alert for a more extended period of time and make viewing them the party. Half-birthday celebrations may also be helpful if there is uncertainty as to location and situation in the next six months. Given variability of focus due to LBD, it is fine to pull out the stops, blow up the balloons, invite friends and neighbors or spend time together to express gratitude for one another, whatever the occasion.
- Being present with one another. Because of changes and challenges created by the illness, deep mutual caring—despite the circumstances—is very precious. A couple dealing with Lewy body dementia takes nothing for granted. Making time to smile, giving eye contact and expressing love and care all enrich life on many levels.
Using creativity helps a couple impacted by LBD keep connected. Commitment and patience enable such a pair to stand strong against the tough challenges and unexpected twists and turns which LBD presents. Taking on the disease in this manner firms up acceptance of the present and builds a foundation for enduring love in the relationship.