Editor’s note: This is the second of two parts.
Marjorie McCaslin of Winslow stopped talking during the last few years of her life, as the Alzheimer’s disease worsened. But she still remembered how to sing.
So her son, Bruce McCaslin, sang with her in the morning, afternoon and night. She still recalled the words to Christmas songs, so they sang them even in the summer.
It is that sweetness that her son remembers now. His mother died at home last October, at the age of 86, having endured Alzheimer’s for 10 years. He does not know if she knew who he was, even though he cared for her 24 hours a day.
McCaslin, 59, describes his family’s caregiving experience as a success story, and it is. But it’s also not something every family is able to emulate. Making decisions about the care of a loved one are difficult and personal.
With the release recently of the National Alzheimer’s Plan, more attention has turned to the disease and its effect on individuals and families. McCaslin’s story comes with lessons learned about available services and the benefit of asking for help for oneself. More awareness is key.
McCaslin gave up his job in California in 2004 to come live with and take care of his mother in Winslow. She had been diagnosed with Alzheimer’s, and his siblings in the area had been calling him with stories: Their mother got lost driving and then volunteered to give up her keys; she left a pot heating on the stove and forgot about it.
The family could have sought an assisted-living facility for her, but they knew she would be most comfortable at home. She and her now-deceased husband, Harvey, raised seven children. They even took in a couple of their children’s friends.
“If any of us have any kindness or generosity, we certainly got it from them,” McCaslin said.
Giving up a yearly salary of $60,000 wasn’t easy, but his mother’s mortgage was paid, and she received a small pension through her husband, who used to work on the railroad. Family members and neighbors offered to help. McCaslin knew the arrangement would work, but he said he couldn’t have known the extent of the challenges.
It wasn’t until she needed hip surgery that a hospital worker suggested Elder Independence of Maine. About two years after McCaslin had returned to Maine, the family contacted the agency and learned McCaslin could be compensated for being a caregiver and that they qualified to have a nurse come to the house to examine her once a month.
As time went on and his mother’s condition worsened, McCaslin was paid for more hours per week. It eventually became a 40-hour-per-week arrangement, though his hours were many more than that.
She often woke up more than seven times a night. She lost the ability to feed herself. McCaslin found safe spots for her in the house — such as on the low-seated sofa where she couldn’t get up and possibly injure herself — so he could get the mail. Eventually she couldn’t move on her own, so he lifted her into her wheelchair. She became incontinent.
Sometimes it got to him, he said, but he did not feel animosity toward her. Unlike some people with Alzheimer’s, she was not violent or paranoid; she didn’t get angry.
“I loved her so dearly, and this was my time to be able to spend some quality time with her,” he said. “One, I had such a terrific family. Two, I have such a terrific partner. Three, we were able to discover, maybe through accident, there were things we could utilize.”
Not every family is in a situation that allows them to take care of a parent with Alzheimer’s, he said. People have to find what works for them. He learned that he had to stop feeling guilty about asking family members for help.
The last weeks of his mother’s life were difficult. She developed a cough and had trouble clearing her throat and swallowing. The doctor told McCaslin his mother might live two or three weeks.
The family moved her bed into the living room, so she could look out the window. They set up a schedule so someone was with her at all times. Surrounded by her family, she passed away in the home where she had cared for, and then been cared by, her son.