I’m still here.
Over the years I have met with community members who help people living with Dementia. Some have been a spouse caring for a spouse, some are children caring for a parent, some are professionals, and some are volunteer community members. I have had people tell me “wow mom does not respond to me that way” or “you’re the only one to make my wife smile,” or walking out of a house with a family member and they say, “you know my mom doesn’t really drive” or “my wife doesn’t really cook,” I will say “I know.” Then they will say, “why didn’t you say anything to them about not doing…?”
One of the hardest aspects of Dementia is the understanding to not argue current times (reality) with the one who has Dementia and thinks they are in a different time and place or recognize or remember people or events in the past. If dad thinks he is in 1950 and needs to go to work, or mom thinks it is 1960 and she needs to go wait at the bus stop to pick up the kids, or a wife thinks her spouse is her father, that is really their reality. It is hard to not correct the person with Dementia into 2019, and say “Dad, you don’t work anymore,” “Mom all your kids are grown,” or “Honey, I’m not your father I’m your husband.”
When I meet with someone with Dementia, I am there to build trust and rapport with the one diagnosed with Dementia. If I say to someone, “Your daughter told me you don’t drive” or “George, you don’t work,” or “Tim is your husband, not your dad.” What does this do? Nothing to build trust and rapport. It builds resentment toward family members and families don’t get the help they need.
When families try and get help for a parent or spouse who is aware they have dementia, getting help is usually successful. Unfortunately, often the person who needs help doesn’t know they need assistance, or they are in denial that anything is wrong, and get angry at their family, make false accusations against family members, which pulls families apart.
I will hear, “I can’t lie to them,” or “Dad, it is 2018 for Pete’s sake,” or “They are just trying to make me mad,” or “they should know better.” All very fair statements for someone helping someone with Dementia. Why is it fair? Helping someone with Dementia is like riding a roller coaster blindfolded. One day the person with Dementia may carry on a conversation without missing a beat, or they eat with their utensil’s, and bathe without an argument they have very little confusion. The next day they can’t remember they ate breakfast, don’t recognize family, eat with their fingers and use the laundry hamper as a toilet.
A person diagnosed with Dementia is still there and is still a person with feelings, emotions, and needs” Then the next day the person is confused and have behaviors which bring more confusion to the family. This is why we hear statements like “they know better, they are faking it, they are just trying to make me mad.”
A person diagnosed with Dementia is still there and is still a person with feelings, emotions, and needs, and still deserves to be treated with dignity and respect and needs empathy, not
Amy Rowan is the Outreach Coordinator for Rocky Mountain Health Plans Medicaid. She can be reached at 970-614-7311.