Hallucinations are all too real for mom with Lewy Body Dementia
When someone you love is living in fear and anxiety it is hard to see that person struggle to make it through each day. Not knowing what is going on can make the situation worse.
Deb Ryan, of Prescott, said when her mom told her she was hearing terrible things happening next door to her, Ryan's first response was that her mom should contact the police. Ryan said her mom would tell her an entire story that sounded believable, so she was worried these things were really happening.
Ryan's mom would call police about what she heard happening in a panic. When the police came to check on things they wouldn't find anything wrong.
"She went to the police station and thought a man on a lawnmower was going to run over a little boy," Ryan said about what she came to understand as one of her mom's hallucinations.
After this incident, the county contacted Ryan, concerned with the welfare of her mom. Ryan contacted Michelle Meinen with the Pierce County Aging and Disability Resource Center (ADRC) for help.
Ryan had experience with dementia as her dad suffered from it; her grandmother had Alzheimer's but what her mom had was completely different. The vivid hallucinations and her mom's adamant belief in these hallucinations were difficult for Ryan to understand.
In the spring of 2016, Ryan started the process of trying to figure out what was going on with her mom. They had numerous doctor's appointments and tests. Ryan also did her own research to see what she could learn about her mom's symptoms.
While her mom kept telling her about what she was hearing and sometimes seeing, Ryan wasn't sure what to think. She actually stayed with her mom one night and was able to confirm that her mom was hallucinating.
"I stayed with her one night last summer," Ryan said. "I had her wake me up when she heard something. I confirmed there was nothing."
Her primary doctor gave her a referral to a neurologist, who tried to help her mom sleep better at night.
"The neurologist prescribed Seroquel to help her sleep," Ryan said. "She was still hallucinating."
The neurologist sent Ryan's mom to another specialist, a neuropsychologist, who ordered an MRI of her brain. During this time, Ryan said her mom was angry because she felt misunderstood and upset that no one believed her. It took almost two years of testing and doctor's appointments before her mom was diagnosed with Lewy Body dementia.
The hallucinations continued. While Ryan's mom didn't see the people she was hearing, her mom started seeing writing on the wall. There was little she could do to make things better.
"I would just tell her, I believe you see it, but I assure you I don't see it," Ryan said. "You want to make it okay, but you can't because it's very real in Lewy Body dementia. [She had] hallucinations at night about snakes and threw her into panic attacks."
Her mom not only saw and heard things but started to smell things as well. She described waking up to the room filled with blue smoke from burning sage, making it hard for her to breathe.
Her mom had to stop driving. But thankfully her mom took the advice of her doctor.
"My mom really trusted his [doctor's] judgement enough to quit driving," Ryan said. "[Fear was she] wouldn't be able to react fast enough if something happened."
Sometimes, her mom will say she is better and doesn't need more help, but Ryan has to remind her mom that her children are helping her get through her day-to-day living.
"They become very dependent on you very quickly," Ryan said. "Remind her we have to hand give her medications. She forgot to take her insulin for nine days."
In order to provide her mom with care, they have been working with the ADRC to find housing where there will be someone available to help with her care.
"Hoping if [she moves] somewhere where [there is] care all night, they can talk to her and convince her she's safe," Ryan said.
For anyone going through a similar experience, Ryan said the person should start keeping a folder with all the information: doctor's appointments, research, symptoms and anything else they get. She said it is hard to keep everything straight and having an organized folder helps.
Her advice to other caregivers is to not take things personally. Ryan knows she appears as the "bad guy" because she has to take things away, but she also understands that her mom's anger comes from the disease and not from her. She said the job of caregiver can be very demanding; sometimes caregivers need to take time to do what is best for themselves.
"It's hard to not take personally and be stressed as a caregiver," Ryan said. "Hard to admit you can't keep doing it all the time. You feel you are failing them. I feel when I get tired and don't want to do anymore I'm giving up, but I need to take care of myself."