Coping with Dementia: One Family’s Story
Coping with Dementia: One Family’s Story
By Mary Bates, MS, CT, Certified Dementia Practitioner
Dementia is the sixth leading cause of death in the United States killing more people than breast cancer and prostate cancer combined, and it has no cure. One in three seniors dies with a form of dementia. The number of cases in the United States is predicted to double by 2050 to over 13 million individuals living with dementia.
Dementia is stealthy. It has an insidious way of creeping up on you. Little concerns or what you later might think of as red flags are often missed. It’s only later when your loved one has indeed been identified as having dementia that you look back and recognize all the signs you had ignored or overlooked.
This is one family’s story:
“We were like that when it came to Mom,” says Katy Curnyn of Littleton. “She was living on her own, had a wonderful younger friend in the house next door, and enjoyed being able to walk to town and church. It all seemed ideal. Family members visited regularly, which she loved. Gradually, we realized that something had changed. We began to notice how she seemed anxious about the neighborhood, complained about her friend who she felt was checking on her, and how she continuously wanted to stop by the bank to check on her finances.”
Mom is Kay Brennan. She led a very active life as a wife to two husbands, a mom to 14 children, a grandmother to 25, and a great-grandmother to more than 42. Because she has dementia those remarkable and comforting family statistics are now lost to her, just as they are for millions of other people across the United States who are living with dementia.
“Initially, one of my sisters agreed to add an in-law suite to her home for Mom,” says Katy. “It was here that the full dimensions of her dementia came to light. Mom’s anxiety turned to anger, her day and night flipped, and she would sleep all day and walk the house at night. And obsessively demanding information about how much money she had was a relentless pursuit. My sister was haunted by worries about Mom taking a walk and getting lost, or as her balance shifted, a fear of her picking up a great grandbaby the minute she walked out of the room. As the years passed it was clear that taking care of Mom was a 24/7 responsibility.”
Even though theirs is a large family, the siblings are scattered across the country and were finding it difficult to figure out how to offer the care their Mom needed while balancing careers and their own mental and physical health. “I admire those who’ve been able to find that balance, but we couldn’t and finally made the decision that help was needed,” Katy says.
Once a decision is reached that one’s loved one needs more care than family members can provide, the next step is exploring service options that enable the family to keep the individual home longer or a variety of residential care options. Residential care ranges from assisted living for those with mild to moderate dementia enhanced assisted living as the disease progresses, and memory care when around-the-clock care and a secure environment are indicated.
Over the next several years their Mom lived in two different senior care facilities in the New York area close to four of Katy’s sisters. “My older sister, who we lovingly refer to as the saint, took on the bulk of the responsibility of handling the finances and doctors’ appointments,” Katy says. “My three other sisters were the backup team, making regular visits, and making sure Mom was happy and had everything she needed. Early on, Mom would come to visit for long weekends and holiday stays, but as time went on, we noticed how the change of environment created so much anxiety for her that, for her sake, it became impossible to continue with those visits.”
It was in the early summer of 2019 when visiting their Mom at her facility that the siblings started to notice a big turnover in staff, fewer activities for residents and cleaning standards slipping. In talking with the management their concerns were not resolved and they decided it was time to investigate other living arrangements for their Mom. Serendipitously, during the search for a secure, comfortable, and caring place for their Mom, Katy made a career change and accepted a position at Summit by Morrison, which made a huge difference in both her and her Mom’s life.
“Working at Summit by Morrison, with its dedicated Memory Care Program, I had a chance to watch the staff, which is highly trained in dementia care. I was also impressed by Summit’s leadership and vision. After a few months, I was convinced that this was the perfect home for our Mom. My sisters all visited and approved. The leadership team is invested in creating a home and caring community for the residents and it shows.”
Kay Brennan moved into Summit in the fall of 2019 and has easily settled into the new environment. She sees Katy almost daily and other family members Zoom or visit regularly now that in-person visits are possible.
“Living through this pandemic with my Mom just down the hall was a gift,” says Katy. “Mom was comfortable, happy, and well cared for just like all the residents. For my family and Mom, it’s easy to say this was absolutely an ideal situation.”
Unfortunately, with dementia, there are no easy answers, and each situation is unique. Families who are exploring options for caring for a loved one who is living with dementia will find a number of helpful resources on the Alzheimer’s Association website (www.alz.org): types of residential care available; guidelines in determining when living at home is no longer an option; choosing a care setting, including questions to ask about staff, programs and services, other residents, meals, and activities; and costs.
Having adequate information helps prepare a family to make the appropriate decisions about the care their loved one needs. It’s never easy, but it can make the process a bit more bearable.
Mary Bates, MS, CT is a Certified Dementia Practitioner. She is the Assisted Living and Memory Care Director of Summit by Morrison, a senior living community offering independent living, assisted living, memory care, and respite care.
Through this column, Mary will share the experience, knowledge, and resources she and her team rely on, anticipating that it will be useful for anyone living with, caring for, or coming into contact with a person with dementia. Send your questions to Understanding Dementia at Summit, 56 Summit Drive, Whitefield, NH 03598 or email email@example.com. Mary will share information and answer as many questions as possible through this column. Learn more about Summit by Morrison at www.themorrisoncommunities.org