9 Tips for Caring for a Spouse With Early Onset Alzheimer’s
Key takeaways:
Nurse Martha Schmitt shares how she cared for her husband Jerry, who started showing signs of early onset Alzheimer’s disease at age 58 and passed away at 67.
She focused on keeping Jerry active, engaged, and feeling valued.
Once she learned to accept help, life became easier.
The first time Martha Schmitt noticed something off with her husband Jerry’s memory, they were driving home to Peoria, Illinois, from Chicago. He missed their exit. It was 2012, and Jerry was 58.
“We had come down that road hundreds of times. He never missed it,” Martha says. “I could not convince him that we needed to turn.”
She didn’t dwell on the incident, chalking it up to the busy weekend.
A few months later, Jerry, a banker, told Martha his doctor prescribed him Aricept, a dementia medicine. This surprised Martha, who’s a registered nurse. Jerry told her he made the appointment because he was having trouble with numbers.
What followed was a decade of doctor appointments, planning and caregiving — all to let Jerry live a full life. Martha found strength in her faith, family, friends, and her basset hound, Hank.
Jerry passed away in April 2022 at age 67. Martha learned a lot from caring for him, and she often shares her knowledge. Here are 9 tips she recommends.
1. Get care from a memory specialist
Martha didn’t know Jerry was struggling until he told her. At home, she handled the bills and family finances. When Jerry’s doctor prescribed Aricept, he did so after having Jerry perform a mini mental exam without any follow-up appointment.
“I insisted we see a neurologist,” Martha says.
They saw a general neurologist, then a memory specialist. To diagnose Jerry’s memory disorder, the physician completed extensive testing, including:
Blood work
A brain MRI
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Jerry was an active, healthy adult with no family history of dementia. He was a runner. He didn’t drink or smoke. He didn’t have heart disease or high blood pressure.
He was involved with his church. He was a hands-on father who coached sons Pete and Tim’s sports teams, led the Cub Scout pack, and took his kids fishing. If you needed someone for help, you asked Jerry.
After 2 years of appointments and testing, Jerry was diagnosed with early onset Alzheimer’s disease. The rare condition affects people before age 65, often in their 40s and 50s.
A second opinion confirmed the diagnosis.
2. Plan for financial and healthcare needs
The Schmitts focused on Jerry’s wishes and end-of-life care. They met with a lawyer and created a power of attorney for Jerry’s legal and healthcare decisions.
They also created a living will. Jerry didn’t want a feeding tube, which many people with dementia eventually need.
Martha and Jerry reviewed their finances and healthcare coverage. Jerry’s diagnosis qualified him for Social Security disability benefits. He also had disability coverage from work.
Jerry stopped working in 2014. Martha continued as a recovery room nurse. She retired early at age 62. She maintained her insurance benefits until she qualified for Medicare.
3. Think for the future
Martha also helped her husband live fully.
“The thing with dementia is, Jerry knew he had it. He knew what his future would be,” Martha says. “It was soul-crushing to him.”
When Jerry stopped working, he could still care for himself. But safety was Martha’s No. 1 concern. She:
Notified neighbors about Jerry’s condition, providing contact information for herself and family members
Outfitted Jerry with a medical alert bracelet for memory disorder patients
Put a GPS tracker in Jerry’s shoe
“He was still cognizant. He liked to ride his bike and run, but things can change so quickly,” Martha says. “He might be fine one day and then get lost the next day.”
4. Maintain favorite activities and friendships
Martha’s goal was to make sure Jerry felt fulfilled and valuable. As his condition worsened, her sister, Jerry’s sister, and their sons (in their 20s at the time) stayed with him on a schedule when Martha was at work.
Jerry loved volunteering. A friend often took him to make lunches for the homeless.
Jerry continued to see long-time friends. They watched baseball games and had dinner.
Jerry enjoyed an annual run along the Illinois River. Martha and Tim ran it, too, so Jerry wouldn’t get lost.
Martha took Jerry on outings. To ease any awkwardness, she printed business cards explaining Jerry’s condition and that he might not respond appropriately. She gave the cards to restaurant servers and others.
“They really helped,” Martha says. “With dementia, you might look fine, but you are acting in an unusual way.”
5. Let your spouse do what they like
When Martha retired, she became Jerry’s full-time caregiver. She read and researched ways to provide good care, using resources from the Alzheimer’s Association and caregiver websites.
She and Jerry listened to music all the time because he loved it. In his younger years, Jerry was artistic, so Martha got him a sketch pad and paints.
When Jerry wanted to mow the lawn, Martha let him. She stayed close. The mower would stop when he released the handle, and Tim or Pete would finish the job later.
For a time, Martha kept a journal to keep track of their activities.
“If we had a bad day, I could go back and look at what we did on good days to figure out if there was too much stimulation or some other cause,” she says.
6. Use assistive and childproof devices
Martha installed alarms on exterior doors so she would know if Jerry left the house. She used childproof locks and handles.
Martha added a bed alarm so she would know when Jerry got up. They had 2 years of interrupted sleep. Jerry liked to take all the clothes out of their closet.
“As long as he couldn’t be hurt or hurt someone else, I just let him do it,” Martha says.
She found helpful assistive devices, such as:
An easy-to-use TV remote with only up and down buttons
A picture phone, so Jerry could push the person’s photo to call them
A shower bench
7. Welcome help
Martha learned to accept help, and to ask for assistance when needed.
“It’s hard and humbling the first time, but it makes life easier,” she says.
She has a large network of family and friends. Often, someone would drop off a meal unannounced or pop by with some baked goods or flowers.
During the COVID-19 pandemic, Jerry lost the ability to walk. He was in hospice care at home for 2 years and 2 months — “an incredibly long time,” Martha says.
She continued to be Jerry’s primary caregiver, leaving the house once a week to run errands. Friends and family visited frequently, letting Martha take a shower, nap, or walk the dog.
“Most people want to help, they just don’t know how,” Martha says. “Don’t make expectations of anyone.”
8. Consider getting a pet
The Schmitts are dog people. They often had two dogs at a time. When Jerry started hospice, they had been without a dog for 5 months. Enter Hank.
The day Hank arrived, he climbed onto Jerry’s bed and snuggled, Martha says.
She calls Hank a godsend. She often saw Jerry reach his hand down to pet Hank. And the pup gives Martha comfort, too.
9. Accept who your spouse is in the moment
At one point, Jerry would ask Martha, “Have you seen my wife? She doesn’t visit anymore. She works at the hospital.”
For Jerry, verbal cues were stronger than visual ones. Martha would get Jerry in the shower and then put on her scrubs.
“I would knock on the bathroom door and say, ‘Jerry, I just got home from work,’” Martha says. “If he could hear me before he could see me, then he could make the connection.”
There are many types of dementia. Alzheimer’s disease is the most common. The condition can cause people to act or speak out of character. Martha says to remember that your spouse can’t help it. Don’t take it personally, and don’t lash out at them.
“One of the best days of this whole process was the day Jerry could no longer remember that he had dementia,” Martha says.
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