Caregiver of mom with dementia grapples with new normal

Weeks ago, Jenny Fox of Poughkeepsie returned from a cruise with her mother, Lois Cuda, who has dementia, her two children, Avery and Graham, and her mother’s friend. They returned just as coronavirus outbreaks were becoming a concern on cruise ships. Fox put her mother and her mother’s friend on a train back to Canada where they live. Now Fox is concerned about losing access to her mother because of coronavirus restrictions. As a caregiver for someone with dementia, Fox said the overall situation has created a complicated and stressful situation.

“After our vacation, they took the train back – and literally, a week later, everything exploded. We were gone March 1-8; they took the train back on the 9th. This has just put a freeze on everything. She’s now in Canada in St. Catherine’s. There’s so much uncertainty. We have no real certainty of when we can see her again,” Fox said, noting that she was asked to work from home upon her return.

“When I got back from vacation, TEG immediately quarantined me because of the concern that I had been on a cruise ship, so I’ve been home for quite a while now,” she said. She says it has been especially challenging as a caregiver because her mother doesn’t really understand what is going on, and her symptoms seem to be worsening.

“This has added a lot more confusion for her. It seems like a lot of her symptoms are amplified. It added even more confusion because she isn’t understanding. She’s been thinking this whole time she was contagious because she was on the cruise ship.”

She said they have been communicating through video chats.

“We’ve been doing a lot of video chatting. She’s still very confused. She reaches out daily to ask if the wait time is done.” Fox said. “I could get there if I had to, but I could run the risk of not being allowed re-entry into the U.S. So that adds a lot more challenges.”

While her father is at home in St. Catherine’s with her mother, she said he also doesn’t seem to fully grasp why they need to stay home, which is another source of concern.

“I’m almost more worried about her and my dad than I am with my own children. With my parents, it’s hard because they don’t necessarily understand. What they’re doing in Canada is slightly different. So I’m just checking in regularly and making sure they get what they need.”

In the midst of these difficulties, Fox said kindness of others has been a source of inspiration.

“You’re seeing such unity from people, even strangers,” she said. “People have been amazing in offering to check on them, just drive by the house.”

Fox said she lives with an ongoing anxiety that access to her mother could at some point be completely blocked.

“At any given time, I could find out that I can’t go. I’m trying to manage that stress, and to be present at home to take care of Avery and Graham. The biggest thing is making sure that there are people I have on the ground in St. Catherine’s who could help out,” she said.

Fox is sadly resigned to the fact that her mother, a former nurse, no longer understands the medical implications of what is happening.

“She is a retired nurse. She was like the best of the best, so for her now to not understand any of this, it is so sad to me. This was her livelihood, this was what she was so well respected for, and she now doesn’t know the basics of why she shouldn’t go places.”

Her concerns also include her mother’s pre-existing health conditions.

“She’s a diabetic, she’s had a stroke in the past. She’s at risk, she’s one of the people we really need to protect, and for me, that’s really difficult,” she said.

Fox said she feels acutely the time lost with her mother.

“Time is so fragile -- it goes so fast. It’s hard to not feel like I’m missing moments. I’m missing time with her. It’s so limited as it is. This uncertainty, and not knowing when the next visit is, it’s stressful. It’s hard,” she said, noting that she’s grateful her children have the special memories of the vacation, but those memories are already fading for her mother.

“The videos and pictures allow her to get a glimpse, but she already doesn’t remember. The vacation was amazing and so hard at the same time because it gave us a really clear picture of where she is,” Fox said. “When you see someone 24 hours a day, you really see the reality of where they are with everything. I asked her the other day, ‘What was your favorite part of the vacation?’ and she mentioned something that didn’t actually happen. It’s just a lot of trying to keep things positive and keep in regular contact. I get worried if I don’t hear from her because then I wonder what that means.”

“I feel like we’re not the only ones who are experiencing this. There are so many other families that are in the same position. Even just to give other people hope and to know they’re not alone.”

About the Hudson Valley Chapter

The Hudson Valley Chapter serves families living with dementia in seven counties in New York, including Duchess, Orange, Putnam, Rockland, Sullivan, Ulster, and Westchester. To learn more about the programs and services offered locally, visit alz.org/hudsonvalley.

About the Alzheimer’s Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection and maximizing quality care and support. Its vision is a world without Alzheimer’s and all dementia. Visit alz.org