Whether it’s Mom, Dad, Grandma or Grandpa – or your spouse – the “holiday quarter” can present special challenges for families with a loved one suffering from dementia.
“We have an expectation that loved ones should never change from the person we’ve perceived them to be for years, but everyone changes significantly over an extended period, especially those diagnosed with dementia,” says Kerry Mills, expert in best care practices for people with dementia, which includes Alzheimer’s.
“Dementia encompasses a wide range of brain diseases, which means it’s not the fault of a Grandma if she has trouble remembering things or gets flustered. Empathy for what she’s experiencing on the level of the brain will help your relationship with her. Do not expect her to meet you halfway to your world; you have to enter her world,” said Mills.
Spouses have a particularly difficult time coping with their partner’s dementia, Mills says. A spousal relationship is a team and is central to the identities of both people. So, while you’re paying special attention to a parent’s or grandparent’s condition, extend it to his or her spouse, she says.
Families tend to have a hard time coping with a loved one’s dementia during holiday gatherings. Mills, coauthor with Jennifer A. Brush of “I Care, A Handbook for Care Partners of People with Dementia,” offers tips for how to interact with a loved one – say, Grandma – whose brain is deteriorating.
• Do not get frustrated. “First, do no harm” – the excellent maxim taught to medical students, is also a great first principle for those interacting with Grandma, who may be experiencing a level of frustration and anxiety you cannot comprehend adequately. She simply doesn’t have access to certain details, but she is still a conscious and feeling person who has plenty to offer. If you get frustrated, she’ll pick up on it.
• Dedicate someone to Grandma during the gathering. Of course, loving families will want to include Grandma in the group, but be careful not to overwhelm her with attention. Her brain, which has trouble processing some information, could use assistance – a liaison to help her process things. Grandpa could probably use a break; her son or daughter may be the best handler during a gathering.
• Give Grandma purpose; give her a task in the kitchen. Keep Grandma, who may’ve been prolific in the kitchen in the past, engaged! Simple tasks, such as mashing potatoes or stirring gravy, may be best. Engage her in conversation about the food. If it’s Grandpa whose suffering dementia, include him in a group. Give him a cigar if the other men are going outside to smoke. Engage him in a conversation about football, which may allow him on his own terms to recall details from the past.
• Use visual imagery and do not ask yes-or-no questions. Again, asking someone with Alzheimer’s to remember a specific incident 23 years ago can be like asking someone confined to a wheelchair to run a 40-yard dash – it’s physically impossible. Don’t pigeonhole her. Direct Grandma in conversation; say things to her that may stimulate recollection, but don’t push a memory that may not be there. Pictures are often an excellent tool.
• Safety is your biggest priority. Whether during a holiday gathering or in general, Grandma may commit herself to activities she shouldn’t be doing, such as driving.
“She’s been driving for decades, and then she develops a memory problem, which not only prevents her from remembering her condition, but also how to drive safely,” Mills says. “This major safety concern applies to any potentially dangerous aspect to life.”
“Currently, there’s a stigma with the condition, but I’d like to change the baseline for how we regard dementia,” Mills says. “As with other medical conditions, Alzheimer’s should not be about waiting to die – patients often live 15 years or more after a diagnosis. It should be about living with it.”
Kerry Mills, MPA, is an expert in best care practices for persons with dementia both in the home and in out-of-home health care residences and organizations. She is a consultant to numerous hospitals, assisted livings, hospice, home care agencies, senior day care centers and nursing homes. In her twelve-year career in health care, she has served as executive director and regional manager for numerous long-term dementia facilities. She is an outspoken advocate for persons with dementia, lecturing in Hong Kong, Canada, China, Europe and the United States. Her book, coauthored with Jennifer A. Brush, “I Care,” is the 2014 Gold Award Winner of the National Mature Media Awards.