It’d be 4 or 5 in the morning, and Alanna Jacobs would hear her grandfather rustling around the house.
“I couldn’t sleep because the stress of what he could be doing made me so nervous I’d have to get out of bed,” said Jacobs of taking care of her grandfather who had Alzheimer’s disease.
“You get to the point where you’re so anxious all the time,” said Jacobs, who was in her early 20s at the time.
On weekends, when her father took over, she could see the stress in him.
“I know he thought things like, ‘I’m not going to the doctor even though I’m not feeling well because I can’t take another day off work in case my dad needs one,’ ” Jacobs said. “You really get put on the back burner as far as health goes. I think if more people were aware of the effect of caregiving, they might take a more serious role in taking care of themselves. … I think you have to admit to yourself that you need time and you have to take time, and then you make time.”
The irony is that as they are trying to boost the well-being of their loved one, wives, husbands, children and grandchildren can see their own risk of illness increase.
“We think that if we can get the caregiver to focus more on themselves, manage the stress better, we think this will have implications not only for their own health but also their ability to provide good care,” said Kathi Heffner of the University of Rochester School of Nursing and Department of Psychiatry.
The university is conducting two studies, financed by the National Institutes of Health, to give family members strategies for coping with the stress of caring for a loved one with Alzheimer’s or dementia.
Heffner is involved with a study on whether brain-training games, to help with attention and processing information, can boost the caregiver’s immune system.
Jan Moynihan, in the departments of Psychosocial Medicine and Microbiology and Immunology, is looking into whether mindfulness techniques such as meditation do the same thing. The studies are open to family caregivers who are 55 and older, but the implications are for caregivers of any age.
“There would be good reason, if we find benefits from these kinds of interventions, that would then make sense to say — hey, maybe you should start this now, that’s good prevention.”
Brian Norton of Pittsford tries to reserve 30 minutes in the morning for a workout.
In some ways, it may add to his exhaustion. “At the same time there’s some way that it actually helps me feel a sense of accomplishment or a sense of control.”
Norton, 49, is caring for his 47-year-old wife, Amy, who has early onset Alzheimer’s.
“People do ask me if I’m taking care of myself,” he said. “I don’t know if my response is the one most men would give. ‘I’m fine.’ ”
Their children were 13 and 10 when Amy Norton was diagnosed. Now they are in high school, and their dad said they also take care of their mother, who is at home.
“For every caregiver, you’re living your life and trying to do what is normal for the age range that you’re in, whether you’re a student or me working or an older adult who’s trying to plan for retirement or enjoy retirement," Brian Norton said. "There’s that added component of caregiving that really starts to, I don’t know if it takes control, but it’s an added weight that does make it tough."
He admits to moments of anger and frustration but relies on his Catholic faith and educating himself about the illness. Because he and Amy are so young, he said they don’t qualify for many studies. Resources also are limited for their children.
“Today the sadness and fear of the future is more prevalent than it might have been a year or two, or three ago. We’re in the later stages of the disease.”
Alanna Jacobs’s grandfather, Lawrence Jacobs, came to live with her parents after his wife, Marjorie, died. As Jacobs looked back at emails in which he asked about memory loss, he seemed to know something was wrong.
She and her brother, Tyler, cared for “Popops” in the summers of 2014 and 2015, when both were home from college.
“My parents never sat down and asked me, but I think our whole family was just, ‘We have to do it' so that’s what we did. There was never a question of whether I could handle it or if I should be doing it. It needed to happen and I was available. So I did it.”
During the week when their dad was at work, Jacobs shared caregiving responsibility with Tyler, who is two years younger. The siblings relied on each other during difficult times.
“I think the biggest thing I reflect on and most caregivers reflect on is what else you could have done because it never feels like enough,” she said. “ … You feel a little bit guilty for feeling irritated or frustrated,” she said.
Jacobs has a degree in clinical neuropyschology and works at URMC, helping patients with mild cognitive impairment. Some of her work is a legacy to “Popops.” She is not involved in the two studies.
“I didn’t know how much of a soft spot I had for dementia and Alzheimer’s,” she said. “I think it’s a lot of people’s experience that someone gets a diagnosis in the family and you’re sent on your way and you have to do all the resource finding, make appointments on your own. After I started doing that, it became obvious to me one thing I wanted to do with my life was give that information to people. …”
Ruth and Chuck Mann of Newark have been married more than 50 years.
Chuck Mann, who recently celebrated his 80th birthday, has lived for the past two years in a nursing home. Ruth Mann, 76, visits her husband at dinnertime to help him, and so he's not alone at what she said is the hardest time of the day.
“I feel that definitely being a caregiver has affected my health,” she said. “What I have seen in all the people I have met, including myself, is you let the little physical, mental and emotional issues go for the bigger picture because you have so many responsibilities that you do what’s necessary before you take care of yourself.”
Bridget Mann said she can tell that her mother has more physical issues, and she sees the emotional toll. “She tells me that pretty much every day she breaks down.”
Ruth Mann said that Bridget's help is a source of strength.
“I feel that we’re a team," Ruth Mann said. "I feel like when she sees I’m stressed, she’ll make a point of trying to relieve that stress. She will check up on me and I really appreciate that.”
Trish DiMarino of Henrietta said she expected that caring for her parents would be part of her life.
“I watched as my mother cared for my grandmother. I was a young mother and helped her as much as I could. … In this situation where my mom is in need of some caregiving, my children are also seeing that it’s really important to us and our family that we take care of each other.”
Her mother, Louise Hauck, 71, lives in a senior community in Brighton. Even though DiMarino knows her mother is safe and has people around her, the daughter said she worries because she doesn’t always know what is happening.
“There is stress involved with making sure I’m available to her as often as I can during the week."
DiMarino, 48, said she knows and guards against the potential hazards of stress.
“Then you’re not able to care for the people you need to care for. Whether it’s physical illness caused by stress or mental illness caused by stress, I think it’s something people have to recognize and realize there’s going to be more and more people put in this position and are under a lot more stress than anybody else.”
Researchers at the University of Rochester Medical Center are enrolling family caregivers in two studies. Participants must be 55 and older and caring for a family member who has Alzheimer's disease. For information, email email@example.com or call (585) 275-6835.
Lifespan of Greater Rochester and the Alzheimer's Association work together on respite programs for family caregivers. For more information in Monroe County, call (585) 244-8400, ext. 213. Outside of Monroe County, call (844) 249-7126.