A clever approach to coping with Alzheimer’s disease

Colorado Springs couple takes control to better manage disease challenges

No one ‘gets’ Alzheimer's better than those who live with it every day. Joanna Fix of Colorado Springs, a former college professor, was diagnosed with the disease nine years ago while she was still in her 40s. Although the challenges the disease poses are a moving target – ever evolving – Joanna and her husband, Forrest, a retired chiropractor, are not giving an inch. The couple is doing everything in their power to ensure they enjoy their lives on their terms.

A frequent volunteer and speaker for the Alzheimer's Association, Joanna wanted to share the lifestyle changes the couple have taken on because they understand, based on support groups they’ve participated in, that they are not alone in adapting to the often unexpected changes and limits the disease can impose.

Minimize the unpredictable

One of the lessons the Fixes have learned in their Alzheimer's journey is that besides being cruel, the disease is unpredictable. They have learned that they must control as many elements of their physical environment as possible and minimize the unknown and unpredictable. The first place they did that is in travel.

Alzheimer’s is a disease that encourages isolation. A recent study cited by the National Institute on Aging notes that one in four people over age 65 experience social isolation, which is both the chicken and egg. The study notes that social isolation can increase the risk of developing dementia, and for those with dementia, social isolation can become a default based on challenges in communication and the reaction they experience from others – part of the stigma of Alzheimer's.

The challenges of travel

For the Fixes, travel poses a variety of challenges. Airports are stressful. The crowds…the noise…the confined spaces…all of these jostle the consciousness of the traveler with Alzheimer’s disease. And that doesn’t even take into consideration the rigid schedules – airline take-off times are inflexible, hotel check-in times don’t accommodate those who need to abruptly readjust.

“If I can’t control my environment, I don’t feel safe,” said Joanna. “If I don’t feel safe, I’ll react to my environment in a negative way that comes out as ‘behaviors’ or saying the wrong thing. In the nine years since my diagnosis, I’ve noticed those situations happening more frequently. I want to avoid it.”
The problems extend beyond the challenge of getting from home to the destination. Getting situated in a hotel doesn’t guarantee the absence of challenges.

“When you check into a hotel, everything looks the same,” said Joanna. “It’s disorienting. And there’s only so many times when you try to get into other people’s rooms before the hotel manager doesn’t want you to stay there.”

Add onto that the lack of familiarity with the furniture layout and the foreign features of the bathroom, and the hotel can feel like an unfriendly place.

Taking control 

The Fixes have decided that rather than being stuck at home, they will take home with them so they can continue to travel – particularly to see family in the Midwest. Their “home away from home” is a 35-foot Class A RV that the couple bought in early 2023 and have modified to suit their needs, including upgrading the suspension to reduce instances of motion sickness for Joanna, and decorating the camper’s three identical stairs to give Joanna a better sense of depth when she enters and exits.

The first trip, in the fall of 2023, took the Fixes on the road for two months. It was a complete success.

“The RV is a good workaround. Really, there were no hiccups (on the trip),” she said. "The immediate surroundings were familiar. The food was always in the same place. The clothes were always in the same place. I don’t have to go searching, which costs me cognitive reserves – which is why I don’t go shopping.”

Traveling in an RV also gives the couple the opportunity to change their schedule as they see fit. If Joanna is experiencing motion sickness, which occurs more frequently now, they can stop.

Keeping peace in the family

In addition to eliminating the unfamiliarity of hotels, traveling – and staying in – an RV helps preserve peace with the family they visit. The noise of family gatherings, combined with the unfamiliar guest quarters and unpredictable diet can result in stressful situations and the “behaviors” that the couple works to minimize.

“We load up the RV’s small kitchen with food so we can cook and eat what we normally eat,” she said. “We don’t want to be subject to someone else’s diet. That’s one less thing I need to perseverate on: what they’re going to be feeding us. So, for a Thanksgiving celebration, we can eat prior to showing up.”

And having the RV as a retreat from the noise and commotion that can occur at family gatherings helps the couple avoid disrupting the festivities for the rest of the family.

When ‘home’ doesn’t feel like ‘home’ anymore

Since their successful initial RV trip, the Fixes have applied a similar approach to their Colorado Springs home. Realizing that their 1970s-era house that had been home for eight years was no longer meeting their evolving needs, the couple took out a second mortgage to give it a makeover – and stayed in their RV, parked at a campground at the Air Force Academy, for the three-month duration of the construction.

After consulting with an ADA-certified (Americans with Disabilities Act) occupational therapist, who offered what the Fixes deemed to be “one-size-fits-all” solutions for anyone with Alzheimer’s, the couple brought in a contractor who listened to their concerns and their needs and helped them customize a solution within their budget.

“We’re all individuals and we don’t all live in the same type of home,” Joanna said. “We wanted some ADA stuff in it without making it look like ADA…make it right for us but not compromise the resale for when that time comes.”

One of the major challenges with the existing home was that it had divided rooms with a dedicated dining room, kitchen and living room.

“I was constantly running into walls,” Joanna said. “Removing two walls has made a world of difference.”

The contractor also remodeled Joanna’s bathroom – the only one equipped with a tub – to provide her more room and comfort.

The remodel extended to the kitchen, replacing vintage appliances with modern versions that are easier for Joanna to operate.

“The old microwave had like 500 buttons – it was insane,” she said. “Having more than a few choices is tough for someone with Alzheimer’s. We got one with five buttons.”

The removal of walls, replacement of appliances and elimination of impediments for Joanna’s daily travels through the house has been a game-changer for the family.

“We knew we wanted to do these things, but didn’t’ realize the anxiety of getting hurt until we moved back in, and (the fear) was gone,” she said. “Now, I can move about my home without the fear of getting hurt. It’s perfect for us.”

There are 91,000 Coloradans among seven million Americans living with Alzheimer’s disease. To learn more about the information, programs and services provided at no charge by the Alzheimer’s Association, go to alz.org or call the Association’s free Helpline, staffed 24/7 by trained professionals, at 800-272-3900.