Grand Forks couple face early onset Alzheimer's disease together
GRAND FORKS, N.D. -- Looking back, there were several signs that suggested to Michael Gallo that things were not right with his wife. In 2006, Joyce received a big order for puppets through her business, "Joy Toys." Puppets were among several ite...
GRAND FORKS, N.D. -- Looking back, there were several signs that suggested to Michael Gallo that things were not right with his wife.
In 2006, Joyce received a big order for puppets through her business, "Joy Toys." Puppets were among several items -- stuffed animals, blankets, toys -- that she designed and created for sale through craft shows and gift shops nationwide.
Joyce, then 57, couldn't remember how to sew the puppets.
"They were distorted," Michael said. "She lost some fine motor skills. When she cut out the pieces, they were more oval than round."
Other signs raised concern.
Joyce forgot how to buckle her seatbelt in the car. An experienced cook, she made lasagna but neglected to add tomato sauce. She served it, unaware of the lapse until their daughter mentioned the ingredient was missing.
He thought Joyce's symptoms may be due to the extreme stress in their life. Around that time, Michael lost his job and their son-in-law suffered a near-fatal accident.
"It's possible they might have been a trigger," he said. "Alzheimer's might have been in her family -- that all these things made it occur at that particular time.
"If it was just stress, she would have recovered as the stress went away."
Consulting with doctors, "we investigated a lot of things," he said. At first, they said, because of excessive stress, Joyce was probably depressed, but doctors ruled out depression as a cause, he said, and no one suggested she take anti-depressants.
She was tested for brain tumors. She had none.
After a few months, her condition did not improve. "She was afraid to drive," Michael said, and although they lived a few blocks from campus, she could not walk there.
"We were suspecting the worst but not wanting to think it."
More testing -- including cognitive, facial recognition and motor skills -- pointed to Alzheimer's disease. She was also tested for Lyme disease, sometimes mistaken for Alzheimer's, he said.
Doctors referred the couple to the Mayo Clinic in Rochester, Minn., where, after a week of testing, Joyce was diagnosed with early onset Alzheimer's disease in November 2008. She was 59.
Joyce was very upset, Michael said. She became depressed and, at times, suicidal.
" 'Why bother?' she'd say. 'I'm dying.' "
About four months later, however, "she began to transition to denying all of that," he said. "She'd say, 'Can you believe those doctors at Mayo said that to me? I'm OK. There's nothing wrong with me.' "
And Michael says, "I'm content to leave it that way. ... Trying to force some other explanation creates stress."
This summer, the couple took a two-week trip to Sweden to tour the country and visit a pen-pal with whom Joyce has corresponded for more than 30 years.
"I don't think I could have gotten her to go to Sweden" without that shift in perspective.
Under stress, Joyce "will cry a lot, become depressed and say things like, 'What's the point, if I'm going to be a blithering idiot?' " he said. "She kind of shuts down."
She will "externalize" blame if something isn't going well, he said. "She'll say, 'They didn't know how to make this blouse right, that's why I can't button it.' It's her defense mechanism."
On good days, she's more talkative, he said. "She'll talk more about life in general, and hold a more coherent conversation." Her face is more expressive -- happy, smiling, cheerful, he said. "When she's happier, she'll do more."
On bad days, when talking, she will repeat the same things, he said. Her facial expression will be sad, neutral or "stone-faced."
He watches for signs of "sundowners," a term applied to the point when, after working hard all day, the brain of a person with Alzheimer's loses function. If this occurs, Joyce may be unwilling to venture out of the home.
"But those times, by far, are the exception rather than the rule," he said. "She's usually up for getting out and going places."
Yet, it's the "little things" that can be the most difficult to deal with, Michael said, "like (her) forgetting to lift the lid on the toilet."
Or the confusion that prompts her to ask, "What are we doing here? I want to go home," though they are at home.
He can no longer return from work and "unload" on her, sharing the ups and downs of his workday, he said. "The disease has robbed Joyce of her broader vision. She can't talk about issues."
He likens her condition to the grogginess one may feel first thing in the morning -- multiplied many times over, he said.
"She can remember with clarity things from her childhood, they're ingrained. But memories formed in the last six years are up for grabs."
The disease "has aged her," he said. "She doesn't carry herself as she used to." Because her field of vision has been affected, she has trouble walking; for example, a step down may look like a shadow to her, he said.
Her mobility is compromised, as evidenced on their trip to Sweden. It was a challenge to get her through the narrow passageway on the plane, he said. "It took three people to get her into her seat."
Eventually, the disease "will get to the part in the brain that tells you to breathe, tells the heart to beat," he said.
More often, though, patients die from complications such as pneumonia, forgetting to take their medications, or a fall, he said.
Joyce needs around-the-clock care, he said. But "there is little support in our society for people dying of Alzheimer's."
As a college professor, he earns too much to qualify for programs that would ease the financial and practical burden, he said. Because she was self-employed, Joyce doesn't qualify for medical disability.
When he began to search sources of support, "I was asked, 'Does she take shots?' and 'Is she on a respirator?' " he said. Since she doesn't have those types of needs, the couple are denied certain forms of assistance.
Joyce is unable to dress or feed herself or cook her own meals, Michael said. She doesn't know how to use the bathroom. She cannot be left alone.
Caregivers are hard to find and the cost for their services quickly adds up "to thousands of dollars," he said. She resists the idea of going to an adult day care facility, insisting she doesn't "need someone to baby-sit me."
Michael's life "is consumed by work and caring for my beloved," he said. He does the household chores and pieces together a schedule of caregivers and family members to look after Joyce while he's teaching or attending professional meetings.
He comes up with "things to challenge her, to keep her going," he said. "The last thing I want to do is sit her in a nursing home."
Recently, the prospect of a trip to the Minnesota State Fair brightened her demeanor.
"We'll have fun," Joyce said.
She loves the music at the fair, she said, and "seeing people I haven't seen for a long time."
Since the diagnosis, Michael has noticed that music and movement are especially beneficial for his wife, he said. "It helps with her mood swings."
The couple do a lot of dancing, he said. "It's funny. Before Alzheimer's, Joyce didn't like to dance."
Sometimes as they dance, "I look in her eyes, I see the recognition" He also sees her appreciation of music and a look of contentment and enjoyment, he said.
They attend recitals by University of North Dakota music faculty and students, and other musical performances in the community and Fargo.
As an educator whose primary focus is early childhood development, Michael's knowledge and experience have helped him handle these challenges.
"No one prepares you for caring for someone with Alzheimer's," he said. "But I felt I was kind of prepared because I was a preschool teacher for 17 years."
He uses tactics such as distraction and humor to motivate Joyce and defuse difficult situations.
"When you're helping a kid learn how to put on shoes, you know that, hey, she'll be able to do this herself one day." It's different with someone with Alzheimer's, he said, who will not be able to do this task later.
Alzheimer's has given Michael a glimpse into what Joyce must have been like as a child.
"It's made her very childlike, almost innocent, with wide-eyed wonder."
When they take walks, she spots things on the ground -- petals of a flower, smooth stones, feathers -- that fascinate her. "It's amazing what she finds and discovers."
The Gallo family is adjusting the best they can, Michael said. The couple's three adult children "are all at different places," coming to terms with their mother's illness.
"It's hard. They're still in their formative years in many ways, building relationships, starting professions."
For all practical purposes, a 20-something child whose parent has Alzheimer's could feel like an orphan, he said. "That's scary. ... Who's going to be there to answer the life questions you have?"
He recalls how in the past, Joyce "took care of me," handled most household tasks -- paying bills, filling out tax forms -- and generally supported him in his career.
"So maybe it's my turn," he said.
Contrary to the widely accepted notion, he said, "Sometimes God does give you more than you can handle, but sends angels along to help us. I've learned I can do more than I thought I could."
Michael is grateful for the support of others, he said. "I know a lot of people are praying for us." He has learned what's important in life, and "how to be there in the moment... (like) the simple act of dancing to Michael Jackson in our living room or walking around the neighborhood."
He likes "to do something for her and then watch her react -- like going to a concert and watching her smile and seeing her face light up."
These days, mornings dawn with a ritual that's become familiar. "We'll wake up and she'll say, 'Do I know you?' I say, 'Yes, I'm your husband.' 'Oh that's good, (since) we're in the same bed.'
"Every morning we kind of renew our relationship. It's kind of cute, but kind of sad."