Posts in category: Dating Tips, Guide and Advice

Melissa Murphey’s dad was diagnosed with dementia in 2015 at 84 years old. As his condition progressed over the last decade, she experienced a sense of loss. “I miss being able to reminisce and ask for his recommendations in life. I miss his storytelling, his wit, and his humor. He was a man of few words growing up but his words were impactful and influenced decisions in my life,” she says. 

Gradually grieving her elderly dad while he is still living is a different kind of grief than Murphey experienced after the loss of her mom. When Murphey was 21 years old, her mom died suddenly of an aneurysm at 52 years old. The unexpectedness of the loss gives her a unique perspective as she navigates her dad’s situation. 

“I feel fortunate to have my dad in my life. He has lived 40 years longer than my mom,” says Murphey. “It is bittersweet, but losing my mom while in college has allowed me to learn more about my dad, his journey as an Irish immigrant, and strong work ethic, and allowed me to develop a closer relationship with him.” 

Gratitude is perhaps the best way Murphey knows how to cope with anticipatory grief, which is grief that is experienced when expecting a loss. “We feel this sense of mourning before the actual loss occurs. We know that in time, we will lose that person/place/thing, and so we preemptively feel the loss and the grief,” explains Gina Moffa, LCSW, psychotherapist and author of “Moving On Doesn’t Mean Letting Go.” 

Understanding Anticipatory Grief

Anticipatory grief refers to intense feelings of sorrow before a loss occurs. A person may grieve as they anticipate death of a loved one or cognitive changes due to a mental health condition like schizophrenia or terminal or age-related illness like Alzheimer’s disease. They may also experience anticipatory grief due to a divorce or non-death-related circumstances. 

For those witnessing a loved one face dementia, Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association, says grief can be more complicated. While the sudden loss of someone to a heart attack, stroke, or accident is deeply painful, she says witnessing the decline of a loved one as they face a disease like Alzheimer’s is unique. 

“Grief starts when someone is diagnosed. People start to experience the loss of future plans like living in Europe for a year,” says Edgerly. “It’s like a thousand cuts, a little bit here, a little bit there, so you are experiencing this grief, this loss, over a longer period of time.” 

The Emotional and Physical Journey of Grief

The impeding loss of a loved one affects people differently. While people can never fully prepare, Moffa says they can show up for the emotional, psychological, or physical experience that arises rather than pushing it away. 

“What so few of us know with grief, especially while anticipating grief, is that it takes endurance,” she says. “With that, we have to take good care of our body—get physical rest, even if you cannot sleep, move your body, get fresh air, drink enough water, and make sure you’re eating nourishing foods.” 

Avoid self-medicating or numbing your feelings with alcohol or food, so you can stay healthy and able to endure the toll that grief and the lead-up to it can take, Moffa adds. 

Take note that you may experience a plethora of physical symptoms, as well, as grief is a full-body experience, says Moffa. “Full-body experiences [may include] headaches, stomachaches, increase or decrease in appetite, sleep disturbances, sexual disturbances, and many more,” she says. 

The Role of Communication

As a loved one faces dementia, Moffa says to embrace keeping an open dialogue when it is possible. 

“Sharing our love, commitment, favorite memories or talking about making more, having important logistical conversations where necessary, and being able to share feelings of fear, or grief is healthy in relationships,” she says. 

While communicating now won’t take away grief when the person is gone, it can help you feel like you haven’t left anything unsaid. “Having honest conversations in very vulnerable times can be daunting and challenging…remember that everyone, including the loved one who is ill, will have many feelings and thoughts, and so going gently and tenderly is most important for everyone,” says Moffa. 

Communicating may change over time and may come and go with dementia. “It can be jarring to folks when all [of a] sudden it seems like your loved one is there and present and able to communicate, and that moment may be fleeting, but you want to take advantage of that moment,” says Edgerly. 

During the early stages of the disease and on days a person is doing well cognitively, she suggests asking your loved one if they would like you to point out changes you witness as their condition progresses and asking them about logistical decisions they want you to make for them. Asking them how they are feeling and if they are noticing any changes can also be meaningful. “It’s pretty amazing to talk through with someone you love what they are experiencing, if they are able to,” says Edgerly. 

As the disease progresses and communicating verbally becomes harder, she says one way to deal with the loss is to communicate in non-verbal ways such as giving them a hand massage or listening to music together. Finding ways to keep a connection can “help with the real sadness [of] not being able to have those heart-to-hearts like you used to,” Edgerly says. 

Coping Strategies for Anticipatory Grief

Coping with the impeding loss of a loved one can take a toll. The following strategies might help with the process. 

Become Educated on Alzheimer’s Disease

“Recognize that there is a progression in disease [by] understanding what is going to be happening. You won’t know exactly when, but you’ll get a sense, and acknowledge, recognize, and give yourself time and the support to deal with these losses along the way,” she says. 

For instance, in later stages of dementia, many people may not recognize their family members or friends. Knowing this can help you cope with the reality of the disease and mourn the different phases and symptoms it presents. “You have to remind them who you are and work through that, so it’s the combination of understanding what to expect and how to handle it in the moment so that the person living with dementia has the most successful experience in life,” says Edgerly. 

“I have taken time to read information and belong to groups on social media that provide insights and tips with dementia and aging,” says Murphey. 

Express Your Feelings

Learning of a terminal diagnosis or witnessing a gradual decline of a loved one can be anxiety-producing. Given so, Moffa says expressing your emotions is essential. She suggests keeping a journal or writing notes in a small notebook as a therapeutic tool to help you process your feelings and experiences.  

Seek Out Support

Finding support from others who are going through the same thing can help you process the experience. “Sometimes that’s other people in your family and sometimes it is absolutely not people in your family,” says Edgerly.  

Online communities and message boards like the Alzheimer’s Association’s free ALZConnected community offer connections to people sharing their insights. “You can feel pretty alone and sometimes online communities can make you feel like you are not alone [because] others are going through the same thing,” Edgerly says. 

Murphey finds online resources helpful, and she credits her dad for being an excellent example of seeking out support. “He needed to pivot with the sudden loss of his wife. He did an excellent job of seeking out resources, participating in bereavement groups, and expanding his social network,” she says.

If support groups are not your thing, consider finding a mental health professional with knowledge of dementia and anticipatory grief. “Sometimes it hard to find the right fit so be patient; you might have to try different therapists out but it’s never too early to start,” says Edgerly. 

Find Closure at Your Own Pace

People accept the inevitability of loss at individual times and may not be the same as other family members. “Some people do not accept it until the last breath of someone they love because the loss feels too immense to process beforehand,” says Moffa. “Grief is messy and clumsy and non-linear. Grief comes when it comes, and there is no need to rush peace or ‘closure.’” 

Preparing for the Future

As you learn to understand the inevitability of loss, it is possible to find peace and closure. For Murphey, knowing her dad is safe and content in his day-to-day brings her comfort. “We have done all we can to have him transition to a memory care facility where there are many activities for
him to participate in,” she says. “We visit often and bring him strong Irish tea and coffee that he has always enjoyed.”

Bottom Line

Grieving a loved one as they face an age-related illness brings about complicated emotions. Understanding their condition, finding ways to cope with your feelings, and seeking out support can help manage the process.

As an Alzheimer’s caregiver myself, I have firsthand knowledge of how easily your self-care can get neglected. Every minute of every day is eaten up with caretaking tasks, phone calls, emails, doctor’s appointments, and so on. On top of that, you may be holding a full-time job and managing your own family’s needs.

By the end of the day, you fall into bed completely drained and deflated. Who has time for things like exercise, healthy eating, meditation, therapy, or any self-care tasks that might be beneficial?

Why Self-Care is Important for Alzheimer’s Caregivers

Yet self-care is essential for Alzheimer’s caregivers, says John Showalter, MD, MSIS, internal medicine physician who serves as chief strategy officer of Linus Health, a digital health company enabling early detection of Alzheimer’s and other dementias.

Simply put, caregiving itself can increase your risk for chronic stress and burnout. This can lead to increased chances of developing anxiety and depression, as well as physical impacts like a weakened immune system and heart disease, cancer, and diabetes.

But neglecting self-care also increases your risk of developing dementia yourself—and that’s regardless of factors such as age and genetics, Dr. Showalter says. As Dr. Showalter explains, studies have found that being a caregiver may increase your risk for dementia by sixfold. This is believed to be from the caregiver’s self-neglect—not attending to their own mental and physical well-being because they are prioritizing caregiving, he explains.

But how do we exercise self-care, and where do we find the time, as caregivers? We tapped into some experts to get their recommendations.

Ask For Help

It’s important to not only ask for help but accept it when it’s offered to you, says Dr. Showalter. Having a respite plan in place is imperative for all caregivers. “Beyond that, ask friends and family for help with smaller caregiving tasks, and explore options for formal/paid assistance or assistance from community-based organizations to help take things off your plate,” Dr. Showalter suggests.

Manage Stress

Caregiving is stressful, and when that stress becomes chronic, it threatens our physical and mental health, says Gary Small, MD, chair of psychiatry at Hackensack University Medical Center. Engaging in stress-reducing activities is essential.

That can look different for different people but Dr. Small recommends exploring meditation, relaxation activities, and Tai Chi or yoga. Some people also find success in journaling, reading, or just picking up the phone and venting to a friend.

Sprinkle Moments of Mindfulness Into Your Day

Research has found that engaging in mindfulness can reduce your long-term risk of cognitive impairment and Alzheimer’s disease. But it can also help you manage the daily stress of caregiving. Plus, a little goes a long way. “Prioritizing a few minutes a day to center your mind, and finding pockets of time to fit in movement—even if just a few minutes at a time—can help you manage from day to day while also maintaining long-term health,” says Dr. Showalter.

Stay Active and Well-Nourished

How often we move and what we eat can have profound aspects on our moods and ability to cope with the stressors of caregiving. “Focus on a balanced diet, such as the Mediterranean or MIND diet, to support brain and heart health,” recommends Rehan Aziz, MD, a geriatric psychiatrist at Jersey Shore University Medical Center.

In addition, add healthy movement to your day. This doesn’t have to be a lot! Engaging in light exercise, such as walking or yoga, even for just 10-15 minutes a day, can improve your mood and energy levels, says Dr. Aziz.

Prioritize Sleep

Many of us caregivers are surviving on little sleep, because who has time for that? But lack of sleep can only exacerbate our stress levels and can lead to other health complications, Dr. Aziz says. He encourages caregivers to create a simple bedtime routine to ensure you’re getting adequate rest. This might look like dimming lights an hour or so before bed, ditching screens or using blue light filters, drinking warm tea, or listening to relaxing music.

Set Realistic Goals

When it comes to incorporating self-care into your life, it pays to set realistic goals. “This is particularly important for over-achievers who feel they need to do it all themselves,” says Dr. Small. “It can be helpful to make a list of all the tasks ahead of you and consider which of those are reasonable for you to take on and which might be delegated to others.”

Set Boundaries

This can be a hard one for caregivers, but it’s vital that you learn to set appropriate boundaries. “Learn to say no to additional responsibilities that drain your energy,” Dr Aziz recommends. There’s a season in life for everything, but when you are knee-deep in caregiving, this may not be the best time to commit to additional life projects or give yourself to others in the way you might have in the past—and that’s okay.

Join a Support Group

Caregiving for an Alzheimer’s patient is a very specific experience, and it’s easy to feel lonely in the experience. “Connecting with other caregivers through in-person or virtual support groups can reduce feelings of isolation, provide emotional validation, and offer practical caregiving tips,” says Dr. Aziz. Organizations like the Alzheimer’s Association offer both local and virtual caregiver support groups, he shares.

Seek Mental Health Help

Sometimes we can’t manage the stress of caregiving on our own, and when mental health challenges come up, it’s necessary to seek care. “If emotional struggles persist, reaching out to a mental health professional for counseling or therapy can be beneficial,” Dr. Aziz recommends. “Caregivers experiencing symptoms of depression or anxiety may benefit from tailored treatment plans, including talk therapy, mindfulness-based stress reduction programs or even medication management.”

Take Advantage Of Resources

Local and state resources can be extremely helpful for Alzheimer’s caregivers. “Respite care, adult day care, hired help, and other community resources will ease your burden of care,” Dr. Small says. He recommends reaching out to the following organizations for assistance:

Bottom Line

As an Alzheimer’s caregiver, you’ve probably been told before that self-care is vital. But many of us feel like we shouldn’t tend to our own needs, even if it’s clear that we are suffering. Part of this has to do with guilt. Why should we take care of ourselves when our loved one needs so much of our energy and care?

But it’s important to remember that caring for ourselves is caring for our loved ones. “Air travelers are instructed that if the oxygen masks drop, they should always put on their own mask before helping others,” Dr. Small describes. “The same principle holds for caregiving: if the caregiver’s emotional needs are not addressed, they put themselves at risk for illness and are not as available to help the patient.”

If you’d met my mother in the prime of her life, you’d have been intimidated. She was a classic beauty, with curly dark hair, dark eyes highlighted by perfectly applied mascara and liner, and a mysterious smile. She was a smart dresser with an artsy flair, always pairing patterns and textures and accessories in inventive ways. Her humor was sharp and unforgiving. She was also an anxious driver, a picky under-eater, and a stickler for cleanliness. She liked our dogs, but only from a distance, and it seemed to me she felt the same way about her three children. 

This Was My Mom… And This Is My Mom With Alzheimer’s

And then, in her 90s, she developed Alzheimer’s, and the mother who’d always held me at arm’s length professed her love for me whenever I called or visited. The anxious driver was replaced with a childlike passenger who exclaimed joyfully when the car took a corner too fast. The lifelong strict eater dove into pizza with abandon, and the neatnik didn’t seem to notice the leaky roof or the roaches in her house. The woman who cared deeply about clothes now wears the same pilled sweatsuit days at a time. 

Still, in some ways, my mother at 96 seems happier than she was in her younger days. She’s still interested in the news and still surprises me and my siblings often with witty responses. There are isolated moments when she’ll get a fleeting grasp of what she’s lost. “What has happened to my memory?” she will ask, her brow furrowed in concern, and then the moment passes, and she is smiling again. 

My Mom Is Disappearing. How Do I Keep My Connection to Her? 

According to the World Health Organization (WHO), more than 55 million people worldwide suffer from dementia; every year, 10 million more join their ranks. Alzheimer’s accounts for approximately 60–70% of overall cases.

I live a hundred miles from the memory care unit where my mother is a resident and drive to see her every two weeks. I won’t lie: knowing how to engage is getting harder. I used to take her out to lunch, and to a small boutique where she would peruse, sometimes for an hour, the few items on offer. But lately, she doesn’t want to go anywhere.

Recently, I brought a projector and showed her family photos on her wall, but her vision is so poor, they were still hard for her to see. I often bring her new clothes, which thrills her, but she rarely wears them. 

My brother sees her almost daily. He plays music, tells her jokes, and walks with her around the tiny courtyard. My sister calls from her home halfway across the country and reads to her; when she’s able to visit, she brings art supplies and draws with her. But my mother is increasingly tired, and it’s getting harder for her to focus. 

For help, I reached out to Jessica Corona-Irwin, a registered nurse, certified dementia practitioner, and certified dementia support group facilitator at Remo Health, a company that provides comprehensive care and guidance to people with dementia and their caregivers.

For starters, she says, it’s important to remember that the behavioral changes are symptoms of the disease. 

“By accepting this new reality, we can approach our relationship with compassion and realistic expectations.” We must adapt to their (and our) new reality, Corona-Irwin says, and “accept and embrace the changes that come with the journey.”

Lean Into Activities She’s Always Enjoyed

Corona-Irwin says it’s good to continue to engage in the same kinds of activities with our loved one that they’ve always enjoyed, even if they can’t be as fully present or involved as they once were. She recommends adapting our activities and offerings to their abilities, so that they’re as accessible and enjoyable as possible. 

For the person who loved clothes, she suggests giving them comfortable lounging outfits that reflect their taste and preferences, and allowing them to choose what they want to wear each day.  

For the art-loving person, simple art supplies like a small easel with washable paints or finger paints, and glitter or sand to add texture, can be stimulating and fun. Large tablets with bold markers are an alternative. Nicely scented ones can add a sensory experience beyond just seeing the colors, as can bringing in a selection of fabrics with interesting textures. Paint, draw, and touch the material along with them for shared engagement, says Corona-Irwin, and talk about what you, and they, are experiencing. 

For my mother, who never missed her three-mile-a-day walk, walking around her tiny courtyard makes her happy. Sometimes we talk about her old walking buddy and people she remembers from the neighborhood.   

If your loved one liked to garden (my mom loved plants), Corona-Irwin suggests bringing small, pots with soil and seeds; simply touching the soil and smelling the plants can bring back pleasant memories and provide physical stimulation. My brother brings a rotating assortment of live flowers to my mom, which she loves.  

Corona-Irwin also suggests sharing a favorite snack (fruit for my mom), listening to music, or playing a simple game can be engaging. Turn off the TV or competing noise so that you can focus on each other. 

“Offering your undivided attention, a warm smile, or a gentle touch can speak volumes when words fail. Pay attention to their non-verbal cues, as these subtle signals can reveal a wealth of emotions and needs.” 

In short, connection is connection. 

How Do You Connect When Your Loved One No Longer Recognizes You?

First off, avoid putting them on the spot. When I walk into my mother’s room, I always call out, “Hey Mom, it’s your favorite daughter, Dana!” This does several things: it circumvents a possibly uncomfortable moment when my mother might not remember my name, or what our relationship is. And “favorite daughter” makes us both laugh. 

If your loved one does not recognize you, simply be with them in the present moment. It’s not necessary that they know exactly who you are or what your relationship is for them to enjoy looking at old photos or hearing a story. My sister reading to our mother requires only that my mother listen; there’s no pressure for her to respond. In this way, they are able to share comfortable, companionable moments without expectations. 

Lastly, shift the emphasis from memory to emotion, says Corona-Irwin; sometimes the best way to connect with someone is to reassure them: “It’s okay, I’m here to spend time with you.” 

Things to Remember When Communicating

Following a few simple guidelines when communicating with someone with dementia will make connecting with them much easier.

• Simplify your language.
• Avoid jargon or insinuation, and give your loved one time to process what you’ve said or asked.
• Simple yes or no questions are better than questions that require elaboration. 
• Pay attention to your (and their) nonverbal cues.
• Always make good eye contact; a warm smile or a reassuring touch on the arm can be more comforting than words.
• Even if what they are saying doesn’t make sense, respond with empathy and validation. My mother often gets anxious when she realizes she doesn’t have her purse. I always reassure her it’s safely stored in her room, and that lunch (or whatever we are doing) is on me.

“Embrace the Alchemy of Letting Go”

Alzheimer’s can slowly rob our loved ones of their identity, and ours as well, creating anxiety, heartbreak, and confusion for all involved. But if we know what to expect, we will have a better chance of maintaining our connection with our loved one. 

“Navigating the complexities of Alzheimer’s disease requires caregivers to embrace the ‘alchemy of letting go,'” says Corona-Irwin. “This means transforming the pain and grief into acceptance and peace, recognizing that while the disease alters your loved one, it also presents a unique opportunity for personal growth and a deeper understanding of your relationship.”

“Equally important is the process of releasing expectations of what once was, creating space for new experiences, and fostering resilience. Families and family dynamics will undergo shifts throughout this journey, while it is challenging, embracing the unknown can lead to unexpected growth and connection.”

“Ultimately, maintaining a strong bond throughout the dementia journey requires a shift in perspective – one that focuses on the enduring love, shared history, and the essence of the person that remains, even as the disease progresses.”

Jennifer Fink was driving with her mom one afternoon when her mother asked, “Does my husband know where we are going?” Fink, who was caregiving for her mom with early-onset Alzheimer’s, instinctively responded, “Yes, Mom. Dad knows where we’re going.” But her mom wasn’t satisfied.

When she asked the same question for the fourth time in less than 10 minutes, Fink wasn’t sure she wanted to continue with their outing. 

She put her mom back in the car and walked around. When her hand hit the door handle, realization struck like a lightning bolt: Fink hadn’t actually answered her mom’s question. 

This time, when her mom asked the same thing again, Fink tried something new. “Oh yeah,” she said. “I saw him at the Rotary meeting and told him what we would be doing today.” Her mom didn’t bring up the question again.

“Caregivers sometimes get so frustrated or confused by the symptoms of Alzheimer’s that they think the person is being deliberately difficult, inattentive, or moody,” says Dr. Jason Krellman, associate professor of neuropsychology at Columbia University Irving Medical Center. “Because people with Alzheimer’s can sometimes appear quite normal or do or remember some things well, we might not fully understand their deficits,” he notes. 

This is why it’s important for caregivers to understand what not to do as much as to learn what to do to better support their loved ones.  Here are six key things to avoid when caring for someone with Alzheimer’s.

Don’t Rush Through Communication

People with Alzheimer’s often have difficulty processing conversations and forming responses due to impaired working memory and language difficulties. “Rushing can make them feel inadequate or dismissed,” says Michelle Mintz, CCC-SLP, a California-based speech pathologist. So, avoid interrupting or finishing their sentences. 

Instead, speak slowly using simple words. And give them the time and space to respond in their own way, Mintz suggests. Repeat information calmly when necessary to help them feel less overwhelmed. 

Don’t Overstimulate Their Environment

“A cluttered or noisy environment can be overwhelming and confusing for someone with Alzheimer’s,” says Mintz. This means no loud music, crowded spaces, scattered stuff, or too many simultaneous conversations. 

Instead, Mintz suggests simplifying their surroundings to create a calm, predictable environment that reduces stress and promotes focus. It’s also important to keep a consistent schedule as much as possible.

Don’t Ignore Their Emotional Needs

People with Alzheimer’s still experience emotions, even if they can’t always express them. “Dismissing their feelings or neglecting to provide comfort can lead to loneliness and distress,” says Mintz. 

So, always acknowledge their emotions, even if their words don’t make sense. Reassure them with phrases like “I’m here to help” to build trust, suggests Mintz. Also, try to engage them in conversations and activities that bring them joy. 

Don’t Try To “Fix” Their Memory

While it can be tempting to try and jog their memory, prompting or quizzing them about things they can’t recall can be a frustrating and, in some cases, painful experience.

Similarly, if they get some details wrong, arguing or contradicting them can be counterproductive. In fact, “it’s very likely that people with more advanced disease will forget the argument even happened within a short time,” says Dr. Krellman. 

Focus on the present moment instead and meet them where they are. Gently remind them only what’s helpful for them to know rather than every detail. “Your goal isn’t to win an argument or force them into our reality—it’s to reduce their anxiety and help them feel secure,” says Nancy Treaster, certified caregiving consultant and co-host of The Caregiver’s Journey podcast. 

Don’t Take Their Behavior Personally

In addition to thinking and memory problems, Alzheimer’s may cause behavioral changes like irritability, aggression, or withdrawal that can be difficult for caregivers. “It’s crucial to remember that these behaviors are symptoms of the disease, not intentional actions against you,” says Mintz.

To help de-escalate the situation, avoid arguing and try not to show frustration. Mintz suggests gently redirecting their attention elsewhere by bringing up a story or an activity they find comforting. 

Don’t Talk About Them Where They Might Overhear

Never talk about them within earshot as if they’re not there. “Even when it seems they’re not following the conversation, they may be understanding more than we realize,” says Treaster. 

It’s best to save sensitive conversations about their care or condition for another time and place, she suggests. 

Effective Communication Strategies

Alzheimer’s affects different people differently, so it’s essential to choose communication techniques that are right for your loved one. Here are a few tips that may help: 

• Keep it simple: Mintz suggests using short, clear sentences, focusing on one idea at a time. Ask yes-or-no or either-or questions, like “Would you like tea or water?” instead of open-ended questions like “What do you want?”
• Use non-verbal cues: “People with dementia often mirror the facial expressions they see. A warm, happy approach usually leads to a warm, happy response,” says Treaster. She suggests speaking warmly, getting at their eye level to maintain eye contact, and wearing a reassuring smile. 
• Approach from the front: Avoid sudden movements and approaching from behind as it may startle them. Also, identify yourself if needed, suggests Fink.
• Add visuals: Support your words with gestures or pictures if verbal instructions are unclear, says Mintz. For example, if asking them to get dressed, gently pat the clothes and say, “Let’s put these clothes on.” Treaster suggests using visual prompts like sticky notes if it’s early in their journey. For example, “I would leave a sticky note on the refrigerator letting my husband know his lunch was in there. These prompts helped him maintain his independence and feel accomplished,” she shares.
• Use positive reinforcement: “Even something as simple as brushing teeth deserves enthusiastic praise,” says Treaster. If they seem confused, use positive reinforcement to gently guide them and appreciate their effort. For example, instead of saying, “Why aren’t you using the soap?” say, “Excellent job using the soap!” This creates a positive, less scary environment, adds Treaster.
• Match their words: It also helps to answer the same question with the exact same worded response. “If you ask me what I did today, and I told you I went to the gym, then you asked again, and I told you I went to the Rotary meeting, you might be confused for a second until you piece together that I did one then the other. People with cognitive diseases can’t do that. I learned that one too late,” Fink shares.

The key is to constantly observe and adjust your communication style accordingly. What works today might not tomorrow, says Treaster. 

Bottom Line

Caregiving is tough, sometimes even overwhelming. By using mindful communication techniques and avoiding common missteps, caregivers can create a safe and supportive environment that reduces frustration and eases the journey for everyone involved.

My loved one’s dementia came at me and my family like a tornado. Suddenly, this formerly self-sufficient member of our family simply couldn’t take care of herself anymore … and we were left to clean up the chaotic disaster her dementia had unleashed.

People think of dementia as the inability to remember dates, names, faces, and words. While that was true for my loved one to some extent, the most notable feature of her dementia was that she couldn’t make adult decisions anymore, couldn’t take care of her space, and had abandoned things like basic hygiene, cleanliness, and order. Basically, her executive functioning had deteriorated dramatically.

So, while we were taking her to doctors and processing her dementia diagnosis, we were also cleaning out her apartment, which had become a hazardous situation as a result of intense hoarding, including the build-up of piles and piles of spoiled and seriously rotten food. We were also managing an enormous buildup of credit card debt she had gotten herself into in a matter of months. And we were doing all this while securing her in-home care as quickly and economically as we could.

Losing Myself in Caregiving

I have two children and a full-time job, so when I needed to help stabilize my recently diagnosed loved one, my own life became a complete mess. I barely had time to eat or sleep, let alone consider things like self-care or my own needs.

But over a year into this journey—and thankfully with a much more stabilized loved one who is cared for 24/7 now—I have learned that abandoning myself in the name of caregiving is a big nope.

It’s non-negotiable. It’s the only way that I will be able to manage whatever the next few years throw at me in terms of the progression of my loved one’s dementia. Most importantly, there is no way I can be the caregiver to my loved one that I need to be unless I take care of myself, too.

Why Finding Meaning Outside Caregiving is Important

It’s not just something I came to on my own: experts wholeheartedly agree that finding meaning outside of caregiving isn’t just important—it’s vital for your mental health and physical health, as well as your ability to be a good caregiver.

“The demanding nature of caregiving poses physical and emotional challenges that can result in burnout without sufficient personal downtime for caregivers,” says Sanam Hafeez, PsyD, neuropsychologist and director of Comprehend the Mind.

Burnout is different from simply being stressed or tired: it describes the physical and mental health impacts of chronic stress, something that can occur when you are spending hours and hours each day trying to balance caregiving with your other life responsibilities. Burnout can include emotional exhaustion, serious lack of energy and emotional endurance, depersonalization and numbness, and a decrease in personal fulfillment. Burnout also includes physical symptoms like headaches, insomnia, GI symptoms, and pain.

In particular, research has found that informal caregivers of dementia patients experience high levels of burnout. Trust me, I’ve been there, and burnout doesn’t just make you miserable as a person. It makes it feel impossible to care for your loved one, and it can cause you to live with a significant amount of resentment.

“Finding meaning outside the caregiver role becomes a necessity to be able to nurture your sense of self and recharge your emotional and mental health,” says Suzanne Teare, LCSW, clinical social worker, and founder at Within Therapy Solutions. “Think about it like putting your own oxygen mask on before helping someone else. You can’t help others if you’re struggling to help yourself.”

What Finding Meaning Outside of Caregiving Might Look Like

Finding meaning outside of caregiving may look different for everyone. There isn’t a one-size-fits-all solution. The main thing is that you pick a few things to focus on and make them a priority in your life.

Finding meaning outside of caregiving is personal and unique to each of us, says Teare. “You might find meaning from rediscovering an old passion like painting or playing guitar,” she describes. “But for someone else, meaning might come from being in nature or spending time with loved ones.”

Here are some options that Dr. Hafeez and Teare shared with us:

• Painting
• Gardening
• Playing musical instruments
• Writing
• Journaling
• Drawing
• Knitting or crocheting
• Physical exercise, like hiking, walking, running, yoga, or hitting the gym
• Joining a hobby club
• Joining a sports league
• Spending time with friends
• Taking continuing education classes (online or in person)
• Engaging in spiritual practice or meditation

How I Found Meaning Outside of Caregiving

For me, finding meaning outside of caregiving meant doing a pretty sweeping reevaluation of my life. I had to figure out what could add richness and nourishment to my life. Then, I had to work my butt off to be sure that I had made them a number one priority.

This meant scheduling these things into my life and being very strict with my schedule. It meant being extremely intentional about how I thought about myself, my life, and my personal boundaries.

Here’s what that all ended up looking like for me.

I Made Daily Self-Care Non-Negotiable

I had always exercised several days each week, and there were times in my life that I meditated. But I knew that once I became a caregiver for my loved one, I would need to make those integral parts of my life. I also needed to take them up a notch.

Exercise is one of the best ways I know how to manage my stress and anxiety, and so for the past year, I’ve made sure to exercise for one hour each morning as soon as I wake up. I keep it simple. I either walk around the neighborhood or do a yoga/Pilates class online. It’s my “me” time and it sets my day up with a bit more energy and clarity. Also: thank you, endorphins.

I also make a point to meditate every morning after I exercise. I do it for 10 minutes and usually use an app. I am terrible at meditating. I’m always thinking of five billion things. But I am usually calmer on the days I meditate, so I continue showing up.

I Picked One Meaningful Activity and Made a Weekly Commitment to It

In addition to being a health journalist and writing articles like the one you are reading right now, I’m a published poet. I love poetry and each poem I write feels like a container where I can put all the stuff of life, including the dark, confusing, and hard-to-process stuff.

There have been times in my life when I have made more or less of a commitment to work on my art, but ever since I became a dementia caregiver, I have made probably the deepest commitment to it yet. I work on poems every Sunday morning from 9 a.m. to noon, no matter what. I also find small chunks of time several evenings a week to write. 

The writing has been instrumental in helping me get through this past year-and-a-half of stress, grief, and “the long goodbye” that so often colors the dementia experience.

I Practiced Daily Affirmations and Changed My Mindset About Putting Myself First

I am the oldest daughter in a family of divorce. I was always expected to be the mature one, and to care for others. I was basically the mother of my family, which meant that putting myself first was never an option. I spent a lot of my adult life caring for others, being the one in charge, and putting myself dead last.

Becoming the caregiver for a loved one with dementia has meant doing a whole lot of caregiving, but also prioritizing myself whenever possible. Besides the actual things I’ve done to accomplish this (as I’ve outlined above), it’s also an internal shift in my thinking that I’ve committed to lately.

It sounds corny, but when I see myself falling into the trap of trying to do everything, trying to be perfect, or taking care of others at the expense of my own needs, I say something like, “Hang on, Wendy, you matter too!” I’ve changed the thoughts in my head. I’ve changed my mindset, and it means that I’ve changed the types of decisions I make on a moment-to-moment basis.

When You Just Don’t Have the Time

You might be reading all this and thinking: Well, this all sounds well and good and I definitely need to do this. But, ummm, how on earth do you expect me to have the time as a caregiver?

“This is a valid question for so many caregivers and it’s important to acknowledge how hard it can feel to find time for yourself when dealing with the intensity of caring for someone with dementia or Alzheimer’s,” Teare says. “But it’s also important to find pockets of time to care for yourself in the process.”

Here are some of her suggestions:

• Start small. Just five minutes of deep breathing or a quick walk around the block can decrease your stress and help you recharge.
• Set boundaries. Tiny boundaries, such as turning off your phone for 15 to 30 minutes or making a point to say “no” to extra commitments, can give yourself a moment to breathe.
• Don’t expect to do this on your own. It’s okay to ask for help, especially now. Reach out to friends, other family members, or professional care services for support.

Bottom Line

Being the caregiver for a dementia patient can be a lot. It’s hard to even describe the burden of this type of care to others who haven’t been there. For me, it’s like being in the middle of a five-alarm fire, while still being expected to go to work each day and care for two children… without any clue what you are doing and very little support from the outside world. Yep, that can take a huge toll on your mental health!

But if there is one silver lining for me (and trust me, it can be hard to find when you are living in the world of dementia), it’s that I learned that it was possible to radically prioritize my own needs even in the most impossible circumstances

If I can do it, you can do it too. We’ve got this.