Almost every family who has a loved one suffering from dementia faces the decision about the ability to care for them at home or whether it’s time to consider an assisted-living facility or nursing home. Many approach this decision with guilt and are forced to make it during a crisis situation.
Former LBDA board member Tamara Real says that the guilt is misplaced. Her husband, Carl Rinne, was diagnosed with LBD at age 74, a couple of years after symptoms began. She cared for him at home until he fell and needed to wear a back brace.
“I knew at that point, Carl needed more care than I could give him,” Tamara said. “Although it broke my heart and it wasn’t an easy decision, moving Carl into assisted living was the right decision for both of us.”
Tamara was not expecting the peace she was able to experience once her loving husband was being cared for by people who know what they were doing rather than her own heartfelt, but novice attempts.
No longer exhausted from the physical effort and the emotional burden of caring for Carl at home, Tamara discovered she could just “be with Carl” and love him.
“I was a better wife when he was in the facility than when he was home,” she declared. “When Carl was home, I could barely get myself through the day.”
When she let the professionals at Huron Woods in Ann Arbor, Michigan, handle the activities of daily living, Tamara began to experience moments of true joy in the hours she spent with her husband every day.
“I discovered what true love is. Just being present with the love of my life was fulfilling. When I was overwhelmed with his physical care, I wasn’t able to appreciate the little moments such as just sitting and holding hands or seeing the sparkle in his eyes when a friend came to visit.”
Many caretakers assume they give up control when they place their loved ones into long-term care. Instead, Tamara points out, you move from the role of physical caretaker to advocate.
Without the stress of daily care, a caretaker can focus attention on quality of life issues and advocating for their needs. “I was still Carl’s primary caretaker, but I could focus on bigger issues than getting him dressed each day.”
Although it surprised them both, Tamara and Carl had a better quality of life, more time to enjoy each other, and fewer medical issues once his physical needs were handled by others. “We both had more mental and physical energy which could be used to do more enjoyable things — like watching the squirrels out the window or snuggling in bed together.”
Scientific research indicates that what Tamara experienced on an emotional level shows up in the level of stress hormones in the body. The Daily Stress and Health Study (DaSH) found that getting regular breaks from providing care to a loved one who has dementia can have a beneficial effect on the caregiver’s health. While the DaSH study focused on the use of Adult Day Services for respite care, it is reasonable to expect the same caretaker health benefits would extend to long-term-care support.
Tamara shares her experience to counter the prevailing myth that a caretaker is “failing” when they turn to assisted living for help.
“If you are open to it, the decision to turn to professionals to help care for your loved one can bring both you and your loved one peace of mind and quality time together.”
Tamara’s only regret with the decision to move Carl into Huron Woods is that it was done in a time of crisis — a very typical experience for families affected by LBD. She encourages families to look at facilities in the area before there is a crisis, make a decision and actually start the application process.
“It’s like insurance,” Tamara said. “You don’t have to use it, but if you want to, you won’t have to be making decisions and filling out applications while your loved one is experiencing a medical crisis.”
While Carl was alive, Tamara became a fixture at Huron Woods, helping other residents with meals, coordinating bingo nights, and listening to their stories. Even a year after her husband’s death, Tamara continues to spend time at Huron Woods with the staff she now considers family.