Ruth was sitting up in her bed, quietly clapping her hands to music no one else could hear.
“Isn’t this the most beautiful party?”
How do you respond? Brian and Sharon have cared for Ruth in their home for the last 12 years. They have learned to enter into Ruth’s reality, and meet her there:
“It is, Ruth! Tell me, who do you see at the party?”
“OH! So many beautiful people! My Aunt Lucy, and Grandma Rita are playing the piano! Everyone is dancing and having the most wonderful time!” Ruth’s eyes were bright with joy, her face more animated than it had been in days.
“Enjoy your party and say hello to Grandma Rita for me!” Sharon replied. “Brian and I are going away for the weekend, but we want to hear all about your party when we return!”
“You go and have fun!” replied Ruth. “I am having the most marvelous time!”
Conversations like these become the amusing silver lining stories of the journey into dementia. Brian and Sharon were told her mother Ruth would live 6 months after her diagnosis. Ruth lived 14 years. With competent medical care and loving family caregivers, 14 years is not unusual.
After diagnosis, Ruth moved into Brian and Sharon’s beautiful home. When care became a 24/7 job, they hired caregivers to come in and help during the day. Additional care afforded them the occasional (and much needed) weekend away.
Communication with Dementia patients is not always as pleasant as this story suggests. Getting someone to do even basic life activities like showering or dressing can become challenging when the centers that regulate emotion and communication are dwindling down to zero. Making dementia’s reality your new reality is tricky, but perhaps a little Scripture can help.
In John 5, a man who was disabled was placed in the Sheep Gate, near the pool of Bethesda. This was the adult day care of the first century. Families would place their disabled relatives here in the morning. At night, they would come back and collect their family member and take them home. During the day, their only (and very slight) hope was to get into the pool if it “stirred” as they believed the stirring came from an angel. The belief is that whoever got into the water first would be healed. Jesus walked straight into this place, found the man, and entered into his world. The disabled man had been there for 38 years! Can you imagine? Jesus did not require this man to come into Jesus’ world, but Jesus entered his…and healed him.
This is what so many do with those who have dementia. Instead of requiring the person with dementia to enter the sane world, these courageous caregivers enter the world of a person who has dementia, seeing the world through their eyes, and brining healing. Even if the healing is only extending a comfortable existence for more years, it is healing nonetheless.
When dealing with dementia, it is easy to focus on the practical and demand our loved one come into our world. We stay in our own reality and expect our loved one to adapt. But, if we make these demands, we miss the possibility of transfiguration: the metamorphosis into a new reality. If we learn to listen, and enter into someone else’s reality, we just may experience some healing ourselves. Perhaps Ruth’s party was an invitation for Brian and Sharon to slow down and enter the dance with her imagined adored relatives playing the piano. The example of Christ invites us into His reality of grace, compassion and patient forgiveness.
Caring for someone with dementia is a life altering experience that may leave you with more questions than you have answers. When you need a little respite, or an extra person who can enter this altered reality with you, AKOTA is here to help.