Gratitude and Dementia Care

When you’re caring for a loved one who’s living with dementia, it’s easy to see what’s wrong. What’s frustrating, irritating, painful. What causes grief. What prompts resentment. The moment when guilt arises.

During some of the harder phases of my seven or so years of caring for my dad, bad days started bad and just got worse.

I’d wake up exhausted, again.

I’d make coffee, but I’d need to tend to my dad and wouldn’t have a chance to drink that desperately needed coffee until it was cold.

Tired, uncaffeinated, grumpy about whatever minor interruption had taken place, I’d stub my toe. Or bang my elbow against a doorframe. Or I’d be hurrying, and I’d trip over my dad’s cane.

That just confirmed what I already knew: the whole day was shot.

And sure enough, the day that started off on the wrong foot would just get worse and worse, until I’d find myself falling into bed already dreading the next day.

That wasn’t always how my days went, but when I had one of those days, it seemed to kick off a cycle—quite possibly because when I’d wake up the next morning, I’d already be alert and watching for a sign that yep, it was going to be another bad day.

At some point, a couple of years into active caregiving, I began to notice that how I was feeling would affect how my dad and I interacted.

If I was irritable, even if I tried to cover it, he’d pick up on my irritation and mirror it back to me.

If I was grieving, fighting back tears, he would soften, become solemn, and physically droop like a flower deprived of water.

And if I was having a good day, if I came into his room humming and smiling and ready to play, he’d meet that mood as well. Not always, but often enough that I noticed.

Having spent my twenties and thirties watching Oprah and then later studying positive psychology as a part of a coaching certification program, I knew that research had shown that a gratitude practice could improve resilience, physical and psychological health, enhance empathy, and more.

And so I decided to try an experiment, in which I’d list five things I was grateful for before even getting out of bed. My hope was that by starting with gratitude, I’d avoid encountering the negative first thing in the morning, and I might even build up a reserve of goodness to combat whatever difficulty might come my way.

Some days, gratitude came easy. I could rejoice that a friend had brought us dinner the night before, that my dad called my by name, that my favorite rosebush was blooming.

On other days, I had to stretch to find five things I could be grateful for. I had to resort to things that I routinely take for granted and, without this practice, wouldn’t pause to be grateful for them. That the sun had risen. That I could sleep in a warm, comfortable bed. For the soft, flickering of a candle.

As I went through this experiment, I discovered that whether my gratitudes were of the more dramatic kind or noting the day-to-day pleasures that I might otherwise have missed, my mood lifted. I was aware that even on the hardest days, I could find something to be grateful for.

I was more likely to hum—especially if my gratitudes had included the joy of music. I was slower to get frustrated.

And because of that magical, mystical energetic mirroring that I’d observed between my mood and my dad’s, when I felt better, he would often interact with me differently, in ways that felt better for both of us.

This gratitude practice was so powerful and became so engrained in me that I continue it even now, nearly four years after my dad’s death.

Each week, I host The Purple Sherpa Family Gathering as Facebook Live, and I always start by inviting participants to list five things (or at least one) that they’re grateful for.

Because when we know we’re going to have to list our gratitudes, we’re more likely to look for what’s good.

And when we look, we find.

When we see the good, we realize that no matter how difficult the days may be, even the bad days have good in them.

My invitation to you: right now (really, right now!) grab a pen and a piece of paper or open a notes app on your phone and list five things you’re grateful for today.

Don’t make this hard. Gratitude doesn’t require your heart to crack open with emotion. Just look for what’s good in your life in this moment, and write it down.

Then do it again tomorrow. And the next day, and the next.

Notice what happens: how you feel, how you and your loved one interact. Watch for subtle shifts.

After sharing this practice with hundreds of dementia family care-partners and caregivers, I’m comfortable predicting that if you consistently seek and identify your gratitude, you’ll feel better and you’ll see improved interactions with your loved one, whether that means a better connection despite garbled verbal communication or experiencing that moment of connection when a brief glance conveys the love you share.

This practice won’t change the course of your loved one’s dementia, but it just might change the way that you both experience the journey.

Self-care when there’s no time for self-care: What do you do when you feel like you’ve lost yourself in caregiving?

Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind The Purple Sherpa and its website, Facebook page, and several Facebook groups. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-dementia-caregiver stress and grief, even stronger because of my friends’ situation.

I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.

And I fantasized for a few couple of minutes during the drive about things I’d love to do. Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.

I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.

Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with me that keeps the endless task list from feeling quite so smothering.

Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than our role as caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of dementia, loved ones quickly lose the ability to remind us. Dementia becomes all-consuming for those who are diagnosed and those who care for them.

Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click here to download our free Comfort for Caregivers guide.

Safety versus autonomy: How can you, as a caregiver, make the decisions your loved one would make?

I recently read an article titled How Americans’ refusal to talk about death hurts the elderlyIt’s a difficult article to read, in part because it points of that although lifespan has increased significantly over the last 100 years, end of life looks very different than it used to. Before the recent medical advances, at a certain age, illness or injury brought on a fairly quick death. Now, we live longer but we also linger longer, in ways that often reduce autonomy and the send of self.

It’s important to ask our parents (and our peers) what healthcare and lifestyle they would want at an advanced age, in the face of a terminal illness that might be or include dementia, to address a potentially curable disease if the treatment would cause greatdiscomfort. Different people have different standards about quality of life, and the only way we’ll know is by asking.

But those discussion are difficult — maybe even terrifying to initiate — and so decision points often arise without the benefit of those conversations. Then what? Quality of life suffers, depending on your definition of quality of life.

“Living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”

Most of us look at nursing homes — with their scheduled meals, constant supervision, adult diapers, wheelchair-bound residents, and depressing bingo nights and we think: I do not want that. I do not want to give up control over my own life, my ability to see the people I want to see and do the things I want to do. I do not want to live a life where I can’t dress myself, where I’m not allowed to feed myself, where I’m barred from living any semblance of the life that I live right now.

And yet, nursing homes are full. Adult children work hard to keep their parents safe, and society at large acknowledges that as right and proper. And so it is — few people, if any, would argue that we don’t have a duty ensure that our aging parents receive the care they need.
The article includes a game-changing thought:

[Author Atul] Gawande speaks with Keren Wilson, the woman who opened the country’s first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can’t ever look at the issue in the same way again. “We want autonomy for ourselves and safety for those we love,” she says.

It’s just that grown children and their elderly parents often have conflicting views of what matters at the end of life. Children often want every precaution taken to prevent injuries and falls. The elderly often want to live as autonomous a life as they can, even if it entails more risk.

I know this to be true. My father loved to walk in our neighborhood, and the neighborhood is well-traveled and safe. A couple of years after his diagnosis, I started to worry that he might get lost, and so I insisted that he walk with me or someone else. He balked, no doubt wanting his privacy and independence. And so I found a tracking device that I could slip into his pocket and watch his progress on my phone in real-time. I’d tested the product and found it to be very good: I could see on the map exactly where it was, so I’d know if my dad wandered and I’d know where to find him. Ah, safety.

On June 14, 2014, my dad wanted to take a walk alone. I was worried, but I knew that he hated being stuck in the house, and on that day he wouldn’t even consider letting me walk with him. We’d argued about it for a few days, and on June 14, I gave him a hug and slipped the tracker in his pocket, then held my breath as he went for a walk. I had told my friends that the benefit of letting him be outside where he could grab a cup of coffee or a sandwich and be along with his thoughts was worth the risk, that I knew the dangers and knew that the benefit to him far outweighed them. On June 14, my dad fell while he was out walking, and that fall precipitated a 17-day hospital stay. I didn’t think he would survive, but he did. He required 24-hour care after that and has not been able to leave the house alone again, something that angered him greatly. He suffered a literal fall from independence. And as I sat by his bed day after day in ICU, I wondered if I had made the right decision.

Reading the article and finding the quote weighing autonomy against safety has helped me to answer that question. My dad has always been fiercely independent, and being trapped at home when he could have gone out would have been a metaphorical death to him. As awful as the result was, I’m glad that he had so many of the walks he loved. My gut led me to the right decision. And as often as I’ve come back to it and second-guessed myself, I know his autonomy mattered more than the risk of a fall. Would I feel the same if he’d died? I’m glad I don’t know. This, of course, isn’t to suggest that there’s no guilt (I suppose I’ll always feel regret and guilt about how June 14 went down), but I know I made the decisions that my dad would have made if he could have understood the risks and rewards.

But that’s my dad, and that’s me. That might or might not be you and your parent. Do you know what you parent wants? Can you weigh autonomy vs. safety and feel confident in the decisions you make as a result? Have you had the conversations that will guide those decisions? If not and if your parent is still cognitively able, have the conversations now. Today. Don’t wait. If you missed the opportunity, think about how your parent lived when all of the choices were open to him or her, and use that knowledge to guide your decisions.

It isn’t easy, but that (in my view) is our real duty to our parents: to help them live as much of the life they want, the way they want, as long as they can.

Interpreting sensory cues: How Alzheimer’s caregivers can figure out what’s going on with a loved one

I recently found an interesting article about using sensory cues to figure out what’s going on with someone who has dementia. Although this “clinical pearl” from Teepa Snow is intended for professional caregivers, the information is equally valid for family caregivers. Here’s why it matters that we learn to observe and interpret these cues:

If we truly understand [that everything changes for someone who has dementia in terms of their abilities for visual and auditory processing and comprehension, as well as the sense of touch, smell and taste] and are willing to observe their abilities and stretch ourselves by looking at what’s happening through the lens of curiosity, we can further understand and choose to support and care for others in ways that make more sense.

For instance, knowing that brain changes due to dementia can change the scope of someone’s visual perception allows you to make some inferences about what’s going on based on where they’re looking. It also allows you to understand that they may not be able to see you if you sit next to them, so you can instead sit directly in front of them to create a better opportunity to engagement. That makes you a much better caregiver.

Read this short article to get a good grounding of how you can interpret and work with changed sensory cues.

Remember the good times!

You’ll probably remember the difficult moments you experience as an Alzheimer’s caregiver with no challenge. The happy moments, though, tend to fade more easily. And yet, it’s the good memories that will sustain you when you’re overwhelmed or exhausted.

Keep a record of the happy moments in a journal (hardcopy or electronic) so you can remember the positive times you and your parent share.