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Norm’s Story: A Portrait of Unconditional Love, Jennifer Davis, February 2020

Caring for a loved one with dementia is not for the faint of heart. Witnessing someone you love deeply slip away is painful, particularly when that someone is your spouse. The mutual support, communication, shared memories, and romantic intimacy that define a committed relationship gradually fade.

It takes a special person to care for a spouse as dementia erodes the foundation on which a marriage is built. According to a 2017 report from the Alzheimer’s Association, thirty-three percent of spousal caregivers in this situation are men. Norm is among that minority who care for a loved-one with dementia in the home, and his story paints a portrait of what true love and devotion look like.

Confronting a Devastating Diagnosis

Several years ago, Norm began to see changes in his wife’s behavior. She had become unusually temperamental, but Norm thought maybe she was just depressed. She had survived a bought with breast cancer 20 years earlier, and the cancer had returned.  As Norm says, “because a lot of us are getting older,” he thought the changes in her behavior came with the territory –perhaps she was having difficulty at 60 adjusting to age-related change and a renewed health challenge. He convinced her to see a psychiatrist.

After several visits, and drug treatment, Norm saw no improvement. He also noticed that her speech was becoming slurred. That’s when he decided to take his wife to a local hospital for further evaluation. Ten hours and multiple tests later, the doctor decided to perform one final procedure – a brain scan. The results were not good. Norm recalls the devastating news the doctor gave him, “We’re not dealing with depression or psychosis – we’re dealing with a neurological disease. Your wife’s brain is deteriorating.”

Norm goes on to say, “As a lay person, I didn’t know what this meant. The doctor advised us to see a neurologist who could better explain the situation and boy, did I get woken up.” Norm decided to get a second opinion from a top neurologist at a leading Boston hospital, which confirmed a diagnosis of Frontal Lobe Dementia, also known as Frontotemporal Dementia or FTD. FTD is caused by progressive nerve cell loss in the brain’s frontal lobes.

There is no cure for FTD, or treatment to slow disease progression. Norm uses the image of Pac Man to describe what’s going on to his friends. “Pac Man is slowly consuming her brain, and there is no way to slow down Pac Man – it’s just doing its thing.”

The lifespan for someone with FTD is normally eight years from when the disease first presents, but Norm doesn’t really know when FTD began in his wife. The behavioral changes that he observed before diagnoses, and which were inexplicable at the time, were probably symptoms of FTD, but he didn’t recognize them as such. Norm guesses that he may have only a year to a year-and-a-half left with her.

Changing Roles from Companion to Caregiver

Norm’s wife is turning 64 in two months, and he describes her as “having the brain of a two-year old.” Picture the behavior of a child that young, and you can start to imagine what Norm is up against. The tragic difference is that a normal two-year old can expect to cognitively progress as time goes on. Norm’s wife will continue to regress. Her eating skills are deteriorating, and she lacks the ability to maintain proper hygiene on her own. “My wife doesn’t know how to keep herself clean and groomed, and doesn’t want to,” says Norm. “She doesn’t speak much anymore because she doesn’t know how to formulate words. It’s very difficult.”

Norm holds onto, and is grateful for the vestiges of his relationship with his wife that remain. She seems to still recognize him. “When I say good night to her, she’ll roll over and give me a kiss,” he says.

That’s not the case with her sons. According to Norm, “Our son, his wife and two grandchildren came for a visit. We all went to the daycare center where my wife spends time to pick her up. She had absolutely no idea who our son was, and that was very hard for him.”

Despite the heart break and physical challenges involved with the care of his wife Norm is determined to stay the course. “It’s a comfort when people who’ve gone through a similar experience offer help, and when I thank them, they reply that I’m doing a good job,” says Norm.  “I’ve heard that other people just give up and put their spouse in a care facility. I’ve been married for 36 years. I’m not just going to give that up. She may not know what’s going on, but I do. It’s like anything else – you stick with it to the end.”

Seeking Support

Norm needed support in his new caregiver role. As so many other family caregivers report, sharing the experience with others in the same boat helps ease the stress, and the sense of feeling overwhelmed with fatigue, emotions, and isolation. His HR department sent him information about the Savvy Caregiver program, which was being offered nearby and Norm decided to give it a shot.

Norm reports, “The Savvy Program was so helpful because it prepared me for what’s going to happen as my wife’s condition worsens. I wanted to get as much information as I could about resources that are available to help family caregivers like me. I’m basically in this by myself.”

After completing the training, Norm offers the following advice:

• Get as much support as you can. “Elder Services of the Merrimack Valley that sponsors Savvy does a wonderful job of locating services for you. Try to utilize them as best as you can.”
• Learn about the disease itself. “Understand why your loved one behaves the way they do. You can’t get mad at them.  They’ve lost the ability to analyze, and they can’t relearn the skills needed to remain independent.”
• Cultivate patience. “Patience has never been my strong suit! Caring for my wife is teaching me patience one way or another.”
• Take care of yourself. “Learn how to keep yourself healthy. It’s like being a mother – you’re not going to lie in bed when your kids are up and need you. Discover ways to take breaks and find time for yourself.”
• It’s an emotional rollercoaster, so look for bright spots. “Because of my wife’s disease she doesn’t show emotion. How do I tell if something is wrong? I try to make things as comfortable for her as possible and make the best of the time we have left together.”

The Savvy Caregiver Program is an example of the evidence-based programs offered by Elder Services of Merrimack Valley’s Healthy Living Center of Excellence, which means their benefit has been proven or informed by research and evaluation. These programs are designed to promote healthy aging among older people.

A grant from Harvard Pilgrim Health Care Foundation supports two evidence-based programs offered by Elder Services of Merrimack Valley’s Healthy Living Center of Excellence, including the Savvy Caregiver and Matter of Balance Trainings in Massachusetts, Maine and New Hampshire. With this grant the programs aim to train 40 Master Trainers, who in turn will train community-based coaches to implement workshops for close to 750 program participants.

A Matter of Balance: Nan’s Story, February 2020, Jennifer Davis

Eighty-one-year old Nan is unflappable. Despite numerous health challenges, she refuses to give in, and prefers to respond to each set back with optimism and action.

Nan suffered a stroke six years ago and lost her vision, ability to read and write, and balance. Following her stroke, she was determined to regain her faculties and worked hard in rehab to recover. But the stroke took its toll, and today she remains legally blind and depends on a walker outside of her home.

If the stroke was not enough, Nan is a diabetic and has undergone surgeries for other conditions, including abdominal surgery last May. “The last surgery was really a doozy,” says Nan. “It’s taken me a long time to bounce back, and I’m only now starting to get the hang of things. But nothing’s going to get me down.”

Balance has been a significant concern for Nan. “I have a fear of falling. I think about it all of the time. But If I couldn’t get out of the house, I’d feel very closed in,” she says.

With her singular determination, Nan took matters into her own hands to combat her fear of falling. “I found out about the Matter of Balance (MOB) program at the Senior Center. I enrolled because since my stroke, my balance is way off. I use a walker, and if I don’t use a walker, I fall a lot.”

Nan is not alone. According to the National Council on Aging, “One in four Americans aged 65+ falls each year. Every 11 seconds, an older person is treated in the emergency room for a fall; every 19 minutes, an older person dies from a fall. Falls are the leading cause of fatal injury and the most common cause of nonfatal trauma-related hospital admissions among older patients.”

To respond to this public health threat, researchers at Boston University’s Roybal Center for enhancement of late-life function developed and tested the MOB program in the late 1990s with a grant from the National Institute on Aging.

MOB is a community-based, small-group program that helps older adults reduce their fear of falling and increase activity levels. This is how Nan describes the program.

“The classes were an hour. During the first 45 minutes we warmed up and started moving. The last 15 minutes were devoted to teaching us ways to prevent falling.  Speakers came in who talked about falls and showed us ways to get up if you fall; what you can do if there’s nothing nearby to hold on to; how to scoot yourself to a place where you can get up or get a hold of somebody to help you. “

Nan offers her own tips to prevent a fall or limit injury from a fall that she learned from MOB:

• Take your time: “Even though I knew better, I was just in too much of a hurry all the time. Slow down – that’s key. Now when I answer the phone, I don’t jump up to answer it anymore. I stand up and hold on to a chair. Then I start walking to get the phone.”
• Arrange the furniture to prevent falls: “I have everything arranged in my house so I can always touch something. I ‘furniture walk’ in the house. Outside I use the walker.”
• Don’t reach for things: “You’re not paying attention to balance when you reach.”
• Pay attention: “If you do fall, think about how you fell, and take steps to reduce the risk in the future.”
• Stay active: “I continue to exercise. I’m in a walking group at the senior center. I walk every Monday and Thursday for an hour.”

“I would recommend MOB,” says Nan. “The trainers personalized the class to our individual needs. For example, because of my surgery, there are a lot of foods that I can’t eat, so they customized a pamphlet for me to help me maintain proper nutrition.

The trainers were very caring and came early and stayed late to talk with us before and after the class. They didn’t rush us. They were phenomenal, and I will take it again if they allow me to.”

Nan is undeniably a “tough cookie,” but she’s proof positive that there are always steps you can take to optimize your quality of life, no matter what the challenge. Sometimes it’s as simple as A Matter of Balance.

A story of love, loss, and resilience, January, 2020, Jennifer Davis

Kate participated in the Savvy Caregiver Program, which provides training and support for those actively caring for friends or family members with dementia. Here is her story.

Confronting Cognitive Decline Alone

Kate and Bob were married for 30 years. And until his death, Kate had served as his primary caregiver as his health declined. The story of Bob’s cognitive decline is all too familiar. His dementia began at 75, and Kate observed that hospitalization for other conditions seemed to fuel progression of his memory loss. Bob’s surgeries, including a hip replacement and open-heart surgery began six and a half years before his death at 81.

With each surgery Bob would suffer a set back and never return to his cognitive capacity before hospitalization. He became more and more confused when he returned home and needed help getting dressed and prompting to wash up. He could comb his hair and brush his teeth, but needed reminding. Kate had taken over giving him his medications years ago.

According to Kate, “Every time Bob went to the hospital or rehab, he didn’t do well. He was confused and didn’t eat well. The medical community was very capable and competent, and the nurses were always fantastic, but they didn’t seem to address his confusion, and I didn’t feel support for his or my emotional needs.”

Coming to Grip with Exhaustion and Isolation

Eventually, Kate enlisted help from a home care agency to help Bob shower because it had become too trying for her. “He just didn’t want to shower, and he would resist me more than he would the aide,” says Kate. “She had lots of experience and was able to cajole him into showering every week. She could make him laugh, when I was exhausted.”

Kate continued to prompt Bob to take care of his personal hygiene, which sometimes he could, but other times couldn’t do. There were moments when he completely forgot the function of common items. One time he tried to ask Kate for a Q-Tip but couldn’t think of the word so he motioned with his hand up by his ear. Kate asked him if he needed a Q-Tip. He nodded yes, but when Kate gave it to him, he looked at it and asked how it worked. On another occasion he applied deodorant on the inside of his elbow. Although, completely devoted to her role as Bob’s caregiver, Kate was often at a loss as to how to help Bob navigate activities of daily living. That was until she discovered the Savvy Caregiver Program.

Kate had taken a class at a senior center that provided an overview on caregiving, which proved helpful. A year later she bumped into a woman from that group who told Kate she’d taken a great course called the Savvy Caregiver Program, which was more detailed and in-depth than the one they had taken together at the senior center.  Kate kept an eye out for the program and signed up.

“It was really terrific for me,” says Kate. “The program provided so much practical information about my husband’s condition, and I received support not only from the instructors, but also from other members of the class. We became a real cohesive group and learned from each other’s experiences.”

Kate was struck in the first class by just how alone she had felt as Bob’s caregiver. As participants shared their stories, she noticed that many of them had considerable family support. “They all seemed to be hooked up with someone else who could share in the caregiving challenges, and I was all alone,” says Kate. “I remember getting very emotional because I felt so isolated.”

But Kate credits the group for breaking through her sense of isolation with sympathy and support. The workshops were structured but there was also ample time for group discussion, and people felt more comfortable bringing up personal issues as the class progressed.

Cultivating Compassion for Others and Self

Participants learned not only about the physical and medical underpinnings of dementia but also what their loved-ones might be experiencing emotionally from their confused viewpoint, and bewildered state of mind. “I developed even more compassion for Bob on that level,” says Kate. “But I also learned compassion for us as caregivers and what we’re going through. It’s a very stressful job. Every time I took a class, I had new tools to work with to help me in my role.”

As an example, Kate learned how to manage Bob’s resistance to taking medications. “In the beginning, I would say – Bob, you need these things! I would go through explanations about why he needed to take his medications,” Kate explains. “I learned through the Savvy Caregiver Program that my pleading probably didn’t even register. Their suggestion, which is so logical was to just let it go, distract him and move on to another task and then bring it up 10 minutes or a half hour later. And, sure enough, he would do it.

That was like a light bulb for me. I was talking to him from my perspective as to why he needed the medications, but he certainly couldn’t comprehend or care at that point what the explanation was. He just didn’t want to do it.”

Kate learned not to argue, not only because it didn’t work, but also because it adversely impacted her own physical and mental wellbeing. There were many sleepless nights, and conflict made the situation much worse. Kate learned that Bob mirrored the mood that she projected. If she got angry, he would respond in kind. If she lightened up, was cajoling and used humor, he would become less stressed. Kate learned, “don’t argue -just go with the flow.”

Learning to Cope with Loss and Be OK

Watching Bob decline was painful for Kate. She sums her feelings up beautifully this way, “It’s hard when you’re in the thick of it and exhausted, and you don’t have the knowledge and techniques you need to navigate the progression of dementia as a family caregiver. The Savvy Caregiver Program helped me see Bob at the point where he was in the moment and accept it.

And also, not to feel alone. Everyone in the class had their own personal story and you realize that there are so many people going through this and there is help out there. And that was such a support, mentally, emotionally and practically. I remember laughing a lot, which is unusual when you’re dealing with such a serious issue.”

The Savvy Caregiver Program is an example of the evidence-based programs offered by Elder Services of Merrimack Valley’s Healthy Living Center of Excellence, which means their benefit has been proven or informed by research and evaluation. These programs are designed to promote healthy aging among older people.

A grant from Harvard Pilgrim Health Care Foundation supports two evidence-based programs offered by including the Savvy Caregiver and Matter of Balance Trainings in Massachusetts, Maine and New Hampshire. With this grant the programs aim to train 40 Master Trainers, who in turn will train community-based coaches to implement workshops for close to 750 program participants.

Care for the Caregiver, December 2019, Jennifer Davis

Care for the Caregiver

The holiday season is a time of giving. At the same time, the joy of putting others first sometimes overshadows the need to take care of yourself. The following timeless story reminds us that we need to be gentle with ourselves during the hustle and bustle that comes with holiday activities – particularly if caring for a loved-one living with dementia. It’s not a personal failure to feel overwhelmed, and reaching out for support is the best thing you can do for yourself and those you love.

Joanne’s Story

Joanne participated in the Savvy Caregiver Program, which provides training and support for those actively caring for friends or family members with dementia. This program is generously supported by the Harvard Pilgrim Health Care Foundation whose leadership understands that families play an important role in caring for individuals living with Alzheimer’s and related dementias.

Devoted Daughter

Caregiving seems to be in Joanne’s DNA. She was a loving and committed daughter who would never dream of putting her mother in a nursing home.

Joanne’s mother, widowed for 30 years lived down the street from her. Joanne had a brother who was involved and always eager to help, but he lived a town away. It seemed only natural that she would keep an eye on her mother.  “Throughout the years I always went down there and made sure she had company because she secluded herself,” Joanne recalls. “She was happy in her own home so I made sure she was OK.”

As Joanne’s mother grew older, Joanne began doing more chores for her. “I did her food shopping- took her to the doctor – cleaned her house – raked her leaves – you name it. I was her everything,” says Joanne.

It was Joanne’s brother who first learned that their mother showed signs of cognitive decline. Feeling overwhelmed by caretaking duties, Joanne asked her brother to take their mother to a doctor’s appointment. “One day he came and told me – just in passing – that the doctor said she showed symptoms of the beginning stages of dementia – nothing more than that,” Joanne remembers.

This memory stands out to Joanne because she was given so little information that would prepare her for what she was about to face as her mother’s disease progressed. Like many families, Joanne thought that dementia was a normal part of aging.

New Signs that All was Not Well

As time went on Joanne’s mother started falling. “She gave me crazy reasons like this flashing light came in and knocked me over. That was the beginning of hallucinations, but I didn’t know it,” says Joanne. “I thought, she’s not being careful. We blamed her.”

As the falls became more frequent, Joanne found herself at her mother’s house more, and less at her own home. Eventually Joanne was sleeping over at her mother’s house, struggling to fulfill all of her work and family obligations and somehow make it all work. But something had to give, and eventually Joanne’s mother moved in with her, where she lived for four years.

At first everything seemed fine, and Joanne continued to go to work. But by the third year she had become more vigilant, calling her mother every day to check on her. A turning point came when Joanne discovered one day that her mother had not eaten lunch even though she professed otherwise. As Joanne realized that her mother required closer supervision it became impossible to work outside the home.

The Diagnosis

It was also around this time that visits to the emergency room became more frequent, and Joanne first learned about Lewy body dementia (LBD). LBD affects brain chemicals that can lead to problems with thinking, movement, behavior, and mood. LBD is the second most common form of progressive dementia after Alzheimer’s disease.

According to Joanne, “During one trip to the ER I told the doctor that my mother was walking, and all of a sudden she couldn’t put one foot in front of the other.”

Although only an autopsy could confirm his diagnosis, the doctor felt that Joanne’s report and past records pointed to LBD as the cause of her mother’s symptoms. Armed with a diagnosis, Joanne hired an aide to come in three days a week to help out. But now, Joanne was starting to suffer as well. Dementia is often referred to as a family disease for good reason. She was coping with her own symptoms of stress and felt very alone.

“I found myself getting really burnt out,” says Joanne. “I was scared more than anything else, because I’m not a nurse or a doctor and didn’t know how it would go. I was taking it one day at a time.”

Finally, the disease progressed to the point where Joanne could no longer care for her mother at home, and she put her in a nursing home where she lived for a year and three months. Looking back Joanne can now see that the disease had presented four years earlier, when her mother started to fall in her own home.

You Don’t Have to Go It Alone

Joanne first learned about the Savvy Caregiver Program from another family during one of her mother’s rehab stays. She confesses that she enrolled in the program primarily for herself. She needed to be with people who were going through the same thing, convinced that no one could understand what she was feeling unless they shared a similar experience.

Joanne had her husband and children for moral support, but she didn’t want to burden her children. According to Joanne, “I wanted my daughter to have her life and go out, because she would have stayed home if I needed her to, and I didn’t want that.”

Joanne’s struggle to care for her mother in the early stage of LBD stands in stark contrast to the support and tools she received as a participant in the Savvy Program. Through educational workshops, Joanne came to understand that her mother’s behaviors were symptoms of the disease and gained new skills for managing her relationship with her mother as the disease progressed.

“The Savvy Program helped me embrace the remaining time with my mother and enjoy it because I understood the personalities that were coming out were symptoms of the disease,” says Joanne.

But perhaps the most profound benefit Joanne received from Savvy was the support she received from other participants who could understand her sense of “going it alone” as a caregiver.

“The only thing I ever wanted from anybody was – how are you doing? How’s it going? That’s it. Not even do you need my help, but how are you? That’s all you want,” says Joanne.

Joanne has become a champion of the Savvy Program and eagerly shares what she learned with other families who are caring for loved-ones with dementia.

“Every doctor should know about Savvy,” says Joanne. “That way caregivers can understand before the disease progresses that they can be a comfort to their loved-one who is living with dementia.” And they learn the importance of taking care of themselves.

The Savvy Caregiver Program is an example of the evidence-based programs offered by Elder Services of Merrimack Valley’s Healthy Living Center of Excellence, which means their benefit has been proven or informed by research and evaluation. These programs are designed to promote healthy aging among older people.

A grant from Harvard Pilgrim Health Care Foundation supports two evidence-based programs including the Savvy Caregiver and Matter of Balance Trainings in Massachusetts, Maine and New Hampshire. With this grant the programs aim to train 40 Master Trainers, who in turn will train community-based coaches to implement workshops for close to 750 program participants.