Acceptance, Attitude, Patience, and Self-Care

Ann and Dave Ed have been married for 42 years. Their children are adults now, and Dave, 85, has been “tired and retired” for several years. Life was good until one day in the summer of 2018 when Dave observed something about his wife for the first time.

“I noticed Ann was not able to remember what she wanted to tell me,” Dave said. At that point, the couple did not seek medical advice because it did not seem serious.

Later, while visiting Florida one winter, Ann, 76, also could not recall things, so Dave brought her to a local hospital for testing.

“The specialist said it was mild cognitive disorder and there was a 50% chance it would get worse. Ann’s got worse,” Dave said.

Diagnosis

In 2021, Dave consulted with internal medicine- and geriatrics-trained Kevin Foley, MD, at Trinity Health Hauenstein Neurosciences in Grand Rapids, Dr. Foley concluded that Ann’s diagnosis was Frontotemporal dementia primary progressive aphasia — a form of dementia that is less common than Alzheimer’s disease but is the most common cause of dementia in adults under age 60.

Frontotemporal dementia involves the deterioration of the brain's frontal and temporal lobes, which are associated with personality, behavior, and language. Symptoms vary depending on which part(s) of the brain are involved. Ann’s symptoms have primarily been language related.

Dave has been impressed with the team at Trinity Health Hauenstein Neurosciences. “Everybody has been nice at Hauenstein, including the people in admissions,” he said. “Dr. Foley is an awesome guy. He is a good man and a good listener. He has a lot of information and experience. I’m glad we got him. He is a real asset.”

Support and Resources

“Because there are no treatment strategies for frontotemporal dementia, our focus switches to caregiver,” said Dr. Foley. “We have ample resources we offer caregivers: community-based resources that people can go out to get and home-based resources that can come to the patient at home. These resources include hands-on patient care and educational resources focused on the caregiver.”

Dave says he has not taken advantage of many resources in the community and through the Hauenstein Neuroscience Center because they don’t fit in with his lifestyle. For example, because Ann wasn’t a particularly social person, he decided not to take her to an adult daycare. He tried attending caregiver support groups for a while, but he chose not to continue with them.

As Ann’s caregiver, Dave’s typical day is like this: “I get her up and help her brush her teeth,” said Dave. “I also help her use the toilet. Then I dress and feed her. As the day goes on, she watches TV. I feed her lunch and dinner. Later, I get her into her night clothes, and she goes to sleep. And we do the same thing the next day.”

“Dave has a different kind of resilience than most caregivers,” said Dr. Foley. “During follow-up appointments, I try to address issues the caregiver mentions about the patient, such as hygiene, clinginess, mood and sleep problems — there’s a constellation of things that can happen.”

Recently, Dave did seek outside help.

“My wife won’t take a shower, so I’m looking to find someone who can help her do that,” said Dave. “Recently, I hired someone to help clean the house. You learn as you go along.”

How Dave Copes

Dave’s strategies for dealing with Ann’s diagnosis boil down to four simple, yet often difficult, concepts to practice: acceptance, attitude, patience, and self-care.

Acceptance The first step for coping is acceptance, which is a lot like the grieving process.

“First, you have to accept the diagnosis,” said Dave. “There is no going back on this. Learn how to roll with the punches. Be prepared: something will be different each day. The whole thing is hard, but you need to keep your emotions in check.”

Attitude Caring for a loved one with a degenerative disease involves a lot of sacrifice.

“Sometimes life deals you things that you don’t think are right,” said Dave. “Is it fun? No. Is it a pain? Yes. But survival boils down pretty much to an attitude. I’m wired a little differently than people who are emotional about this type of thing. You have to be willing to make the best of it. My attitude is to move on. I keep my spirits up by drinking caffeine-free diet Pepsi.”

Patience Dave tries to get Ann to think that what he wants her to do is her idea. He cautions readers not to try to reason with their loved ones, and to avoid asking a lot of questions.

“You need to exercise patience, and that can be hard,” said Dave. “It will help if you learn to be a good listener. When you’re dealing with this kind of disease, communication is not what you think it is. There is no conversation. In Ann’s case, she is like a 2- or 3-year-old child. She might say no, but neither of us knows why she said it. It’s not her fault; it’s the way the disease is. But it is like living with a toddler.”

Self-Care The caregiver must be willing to move forward each day with a positive attitude, which includes making time for self-care. Dave still goes to his medical appointments and shops for groceries, but he takes Ann with him. The couple also attends church weekly unless Ann “digs in her heels” and won’t go. Occasionally, Dave goes out on his own.

“I can leave Ann alone for about an hour,” said Dave. “I try to go to the gym every day, but sometimes it is every other day. And sometimes I go to lunch with a friend. Taking care of yourself will be different for every person,” said Dave.

What Lies Ahead

Looking forward can be stressful and complicated. Dave is concerned about Ann’s care, if he dies first. Trying to plan ahead can be daunting.

“I can’t look into the future because I don’t know what’s out there,” Dave shared. “Everything depends on Ann. My lifestyle could change tomorrow or never change.”

Dave knows the progression of the disease could involve several new behaviors and that the unknown can be scary. Today, he can leave Ann unsupervised for a brief time — but that may change, without warning.

“There is always a chance she will walk out the door when I am gone, so I have to be careful about that,” said Dave. “With the mental condition she is in, if she falls, she could break a bone, and I would have to call the fire department to pick her up. So far, she hasn’t put something in her mouth that she shouldn’t, but that is also a concern.”

Dr. Foley said that all caregivers need to think about a succession plan [of care for the patient] because the situation isn’t going to get easier. “The strain and the stress for the caregiver always goes up,” he said. “There is chaos when there is no succession plan.”

Dave realizes that he will need to place his wife in a memory care facility before she hurts herself. “Ann is on the waiting list for a Christian nonprofit residential memory facility near us,” he said. “You just don’t know when it is the right time to make that change. At this point, it’s in God’s hands.”

To learn more about Memory Disorder services at Trinity Health Michigan, visit TrinityHealthMichigan.org/MemoryDisorders.