My father was diagnosed with Alzheimer’s Disease after a weeks-long process that involved a physical exam, blood work, a brain scan, a spinal tap, and neuropsychological testing.

He went through the process only because I asked him to, not because he was concerned.  Many months later, I found stacks of handwritten notes that he’d made to remind himself of ordinary tasks such as how to print a document from his computer to the names of key people in his life, including my mother, to whom he’d been married for 43 years when she died.

After the testing was complete, we met with the neurologist on a sunny, warm Wednesday afternoon in a windowless office tucked deep inside a geriatric hospital.

The doctor, a nice and efficient young man with long hair held in a ponytail with an elastic band, smiled as we sat down. My dad was relaxed. I was tense.

Dr. Hales went straight to the point. “After all of the testing we’ve done, there’s no question that you have Alzheimer’s Disease. We can’t give an absolute diagnosis without dissecting your brain, but we found beta-amyloid proteins in your spinal fluid, and that’s the next best thing. All of the evidence is consistent.”

I glanced at my dad as Dr. Hale’s voice morphed into a background drone. His posture hadn’t changed: his face was open and somewhat impassive, just listening as the doctor passed his sentence.

I felt something in my hand as I looked at my dad, and I saw that Dr. Hales had handed me some tissues. That’s when I realized that I was crying.

The smell of the tissues reminded me of my grandmother. My mother’s mother, who also had Alzheimer’s. My grandmother had fearlessly traveled the world, was in Hanoi when it fell, was always in charge of her business affairs and her church committees and her women’s clubs. But she turned into an angry woman who escaped her caregiver, running out of her home into a Texas winter night, wearing only a thin nightgown. She turned into someone I didn’t recognize, someone who didn’t speak, didn’t even look at me. Someone who lost the ability to care for herself, who was losing the ability to swallow food and drink when she mercifully died from a heart attack.

Shaking my head to clear my grandmother’s story from my mind, I decided that my dad’s story would be different, that I would do whatever it took to keep him from experiencing the kind of decline she did. And I intentionally dismissed the memory of how my mother became haggard and exhausted as she cared for my grandmother, even though my grandmother lived in a nursing home. That, I vowed, would not be either of us.

We left the doctor’s office without being given any concrete advice or even an information sheet about Alzheimer’s. Only a prescription for some medication that Dr. Hales suggested might help, at least for a while, and a direction to return in six months.

We returned to the parking lot as I struggled to hold back my tears. I decided to let my dad lead the conversation, but he asked only where I wanted to go to dinner.

Though I had no appetite, I craved something familiar. I suggested we go to the club where my dad had been a member since I was a young child. Where, like Cheers, everybody knew our name.

As we drove toward the club, I realized that I would need to learn about this unwelcoming future awaiting my dad. I wanted no part of it: not the disease, not the learning about it, not the living through it. We were hurtling forward into something neither of us had expected.

But we had no choice.

Looking back, I want to wrap my arms around the me who swallowed tears that evening along with dinner and offer some comfort. Yes, the future feels grim. As afraid as you are now, you’re also naive. You have no idea of what’s coming—the joy or the pain. Yes, that’s true.

Yes, as hard as it is to accept, dementia will take the man who’s always been your bedrock.

Yes, despite it all, you will survive.

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.

​Have you heard your loved one who’s living with dementia say something like this?

• I don’t know what’s wrong with you. I’m perfectly fine.
• I don’t need your help. I’m fine.
• You’re the one with the problem, not me.
• I don’t know why you act like I can’t do anything right.
• I don’t know why you’re trying to control me.
• I’m perfectly fine. It’s all of you who are trying to confuse me.
• I remember just fine, you’re the one who doesn’t know what they’re talking about.

It’s frustrating when someone you love who’s living with dementia insists that they’re fine, that their cognitive abilities are completely intact, and that you’re the one who (choose the argument of the day) can’t do anything right, doesn’t remember how things are supposed to be, keeps insisting there’s a problem when there isn’t one.

Maybe the complaint is laced with suspicion: you’re trying to convince everybody that I’m crazy or you’re trying to confuse me or you’re trying to trip me up.

When you’re the care-partner or caregiver devoting your time and energy to making things go well for the person you love who’s living with dementia, this is an frustrating claim.

I knew that my dad’s dementia had progressed to the point that he couldn’t safely walk alone in our neighborhood. He might get lost or wander off his planned path, or he might not understand that cars don’t always stop at stop signs and step in front of a driver who was in the midst of a rolling stop.

And so I insisted that someone should walk with him. But because he was unaware of the danger that dementia created, he wouldn’t allow anyone to join him on his walks.

I suggested that I could walk a few feet behind him, or we could find someone he’d enjoy in conversation, and his response was like a soundbite stuck on repeat: “Why? There’s nothing wrong with me!”

I could see he needed help, but he wouldn’t admit it. It felt like a stubborn refusal or an aggressively defensive reaction to my attempts to help him.

Until I discovered that he was exhibiting anosognosia, I was incredibly frustrated and even angry that he was denying the truth of his condition.

Anosognosia is defined as the lack of ability to understand and perceive one’s condition.

In the context of dementia, anosognosia means that the person who’s insisting they’re fine truly believes they’re fine: they genuinely can’t see or recognize that their memory or judgment or ability to find the right words has been compromised.

The losses that are apparent to us as family members and care-partners are invisible to the person experiencing anosognosia.

And so what looks like stubbornness is actually a disability.

Another example comes from a member of The Purple Sherpa Basecamp on Facebook. Susan (not her real name) was aghast to discover her husband using a chainsaw to cut a small piece of lumber. When she challenged him, he told her that she was wrong, that he’d been using his tools just fine for years, that she never used them, and that he wasn’t the one with the problem—she was.

Susan couldn’t understand why her handyman husband had suddenly forgotten how to use a chainsaw properly and that he didn’t even know he’d forgotten.

Anosognosia.

And here’s the tricky part about anosognosia: no matter how much evidence you bring to prove that your loved one isn’t perceiving things correctly, there is no chance that you’ll be able to persuade him or her.

Anosognosia will eliminate any possibility that your loved one will even see that there’s a problem. The physical changes in the brain caused by dementia will prevent your loved one from recognizing that there are any changes.

It’s important to realize that, as with so many other symptoms of dementia, anosognosia may come and go over the course of a few days or even a few hours. Someone who agrees he needs help today may insist that you’re trying to put one over on him next week, that he doesn’t need help, that he never agreed to any such thing.

Knowing that your loved one is experiencing anosognosia, not just being stubborn, doesn’t change the experience you’ll have. But it just might help you to feel empathy—and that may change your experience.

If you know why your loved one who needs help is arguing that she’s just fine, you may be able to respond with empathy rather than exasperation.

Empathy can prompt you to look for ways to address the underlying issue with creativity rather than frustration.

For example, if suggesting hiring a daytime caregiver causes your loved one to get upset and swear they don’t need any help, consider telling your loved one that a friend (whom you’ll pay) wants to spend time with them. (And be sure the “friend” shows up in street clothes, not in scrubs or another type of professional caregiver’s uniform.)

If your loved one keeps forgetting to pay the bills but insists that she’s always managed “just fine” and doesn’t need your help, perhaps you could intercept the bills and pay them while leaving your loved one an old checkbook so that she doesn’t feel undercut. (This is a good reason why it’s important to be sure an appropriate person has financial Power of Attorney before it’s needed: when it’s needed, it may be difficult or impossible to get it done because your loved one may lack the legal capacity to grant the Power of Attorney.)

Even leaning into your empathy, you might find it difficult to come up with a creative approach to deal with a problem that anosognosia is preventing your loved one from seeing. A support group can be helpful in this situation, and you’ll likely pick up “been there, done that” advice. (If you’re on Facebook, check out The Purple Sherpa Basecamp, which is open exclusively to dementia family care-partners and caregivers.) 

And on occasion, when safety is at stake, you may have to muscle through an anosognosia-based objection to help rather than seeking a clever way around it.

How have you handled situations when your loved one claims not to have any problems when you know that isn’t the case?

How do you know when you're home?

That question is often on my mind, especially when a member of our online support group The Purple Sherpa Basecamp shares that their loved one wants to go home because they don't recognize they're living in the place that's been home for them, sometimes for many years.

Here's what I recently wrote on my personal blog about this situation:

So how might we think about the request to go home? Again, from my blog:

When I was caring for my dad, I worked to surround him with things that once had meaning for him. Sometimes the meaning lingered and sometimes not.

My dad loved the Georgia Tech Yellow Jackets, so I stocked the kitchen with cups and mugs that displayed the Yellow Jacket logo. I bought him Yellow Jacket t-shirts and throw pillows. Sometimes our home looked like a tailgate party gone awry with all the Georgia Tech merchandise, but I found that it helped to orient my dad to something that mattered for him.

Even though my dad seemed to forget about my mom (who had died about 8 years before he was diagnosed with Alzheimer's), I could tell that he recognized her photo, so I kept plenty around. Once, late into dementia, he even pointed to a wedding photo and said, "She was my person." He couldn't tell me anything about her or their marriage with words, but the look in his eyes told me that seeing the photos was an anchor for something important that he knew on a level deeper than words.

I tried lots of other things to help my dad recognize that he was safe, among people who knew him and loved him, where he could be comfortable: music, art, knick-knacks, even toys from my own childhood that he'd used during our playtime. 

Like anything else with dementia, sometimes these cues connected for him, and sometimes they didn't. But I think the message landed: he was home.

How can you bring elements that represent safety, security, comfort, and history into your loved one's space? What do you think they'd say if asked to answer the question, what is home for you? Let that guide you.

​Until people understand that Alzheimer's and related forms of dementia are not just about grandma forgetting things more often than she used to...

Until people understand that early-onset Alzheimer's affects millions of people under age 60 (often in their 40s and 50s)...

Until people understand that dementia causes death of successive parts of the brain, affecting the ability to walk, speak, swallow, and eventually causing physical death....

Until people understand that Alzheimer's is the only leading cause of death with no cure, no scientifically proven method of prevention, and no treatment that is universally effective...

Until people understand that millions of their friends and family members are forced to quit working to care for a loved one, putting their own future at great financial risk...

Until people understand that a lack of societal and governmental support means that many who have dementia are forced to fight tooth and nail to be able to live well despite the disease and that far too many people lose that fight...

Until these things change, Alzheimer's and other related forms of dementia will remain misunderstood and underfunded. It's up to us to raise dementia awareness.

Whenever I post something on Facebook that references the existence of beauty or joy or any kind of gift in dementia or dementia care, there’s always pushback. “There’s no beauty in dementia! Dementia is ugly and brutal and there’s no good anywhere in it. Dementia tortures the person affected and the caregiver.” One person recently even stated that a family member who died with dementia was “crucified.”

There’s no denying that dementia is ugly. No one has ever said, wouldn’t it be great to experience the beauty that is dementia.... no one.

But I would argue that there is beauty and joy and laughter and other forms of goodness that exist despite dementia.

Early on, before dementia has taken a significant toll, I would suggest that to a large degree, we the care-partners and caregivers along with the person who’s living with dementia have a dramatic ability to affect the degree of goodness we experience. A recent and controversial article in The New York Times suggested “changing the tragedy narrative” of dementia by focusing on the good that exists for as long as possible. There’s an opportunity for gentle humor and much of the goodness of ordinary life because although the person living with dementia experiences some deficits, their impact on overall quality of life is not devastating. In fact, this is an important aspect of advocacy since the common understanding of an uninformed public is that a person who is living with dementia goes from healthy to entirely impaired almost immediately — something those of us who interact with people living with dementia know.

But what about later in dementia’s progression? Unpleasant symptoms of brain death caused by dementia abound. Inability to communicate as clearly (or perhaps not at all), incontinence, hallucinations, paranoia, personality changes, and more are frequent. Where’s the beauty in that list? The joy?

it would be naive, even offensive, to downplay the difficult, uncomfortable, frightening aspects of dementia. And it’s true that as dementia progresses, the good days get to be shorter and fewer. Every person experiences dementia somewhat differently, and some people undoubtedly experience the worst dementia has to offer on an ongoing basis. For most people, though, moments of beauty and joy and connection are possible. Here’s what those moments look like...

• ​A smile or laugh
• A look or words of recognition when the person living with dementia has forgotten a name or relationship
• A cogent comment out of the blue
• Expressions of love, verbal or non-verbal
• Interest in an activity when none previously existed

​As dementia progresses, the key is to watch for and/or to create moments of joy and beauty. In fact, one book The Purple Sherpa recommends is titled Creating Moments of Joy for the Person With Alzherimer’s Or Dementia. As dementia progresses, these moment may become less and less common and they may last for shorter periods of time... But if we watch carefully, we will most likely see these moments, at least occasionally. And if we do not believe that such moments are possible, we surely won’t see them.

What moments of joy or beauty have you seen?

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.

​It is, hands down, the most popular image I’ve shared, with thousands of like, comments, and shares. I’m not surprised, because Teepa Snow‘s quote is a direct challenge to the often-expressed belief that dementia robs a person of who they are, makes them say and do things that they’d find humiliating, and leaves them essentially as an empty shell. A secondary belief is that the way we as caregivers and bystanders react to someone with dementia can give them as much dignity as possible despite the disease.

Honestly? Even typing those sentences makes me sick to my stomach. That’s how much I disbelieve those perspective.

Here’s what I do believe:

• I believe that people who have dementia are still themselves, though they may not be able to express who they are in the way they once did.
• I believe that people who have dementia retain intrinsic dignity, meaning that they are just as worthy of respect and self-respect as they ever have been.
• I believe that people who have dementia say and do things that are out of character because the disease alters and damages the brain.
• I believe that the “out of character” behaviors are no more humiliating than any other unpleasant by-product of disease. Falling to the floor and thrashing around for no reason might be humiliating; falling to the floor and thrashing around because of a tumor-induced seizure is not humiliating. A style of walking that would be embarrassing for someone with full physical capability loses any negative tinge for someone who is walking as best he can due to a disability.
• I believe that the way we respond to a person who has dementia can affirm who they are or strip them of their identity.
• I believe that the way we respond to a person who has dementia reveals the degree to which we feel they are worthy of respect.

I am sad to admit that there have been times when I was embarrassed by my father’s dementia-induced behavior. I was embarrassed when he yelled at someone working at the local Social Security Office when we were trying to get him properly enrolled in Medicare. I was embarrassed when he spoke with a friend and I saw their confusion because his words didn’t make any sense at all. I was embarrassed when his disinhibition allowed him to say things to people that he never would but for the disease. In each of those instances, I was embarrassed because I didn’t think my father was behaving appropriately and I apologized for his behavior.

And my embarrassment and apology meant that in those moments, I did not see him as worthy of respect--my reaction robbed him of his dignity. Typing that sentence makes me sick to my stomach, too.

As I came to realize that those and other behaviors (eating with his hands, for example) were driven by the disease, I realized that he was doing the very best that he could with his eroding brain. When he says or does things that aren’t appropriate according to our ordinary social mores, I might explain so that others can understand that we are seeing a disease in action, but I no longer apologize. My father is disabled, and his disability is not inconsistent with dignity.

So, what does it mean to treat a person who is living with dementia with dignity?

• Speak to a person who has dementia like an adult, not like a child. It may be necessary to use simple language or even to use gestures or images instead of words, but there’s an underlying respect for the life experience and perspective of an adult, even if that’s compromised by the effects of dementia.
• Include the person who has dementia in the conversation. Tell stories about your loved one that you can enjoy together, but don’t talk around the person. One of the most embarrassing exchanges I was party to was when a friend visited very early in my dad’s disease progression and asked me how my dad was. I turned to my dad, asked how he was feeling, and he answered. Not catching the hint, the friend continued to ask me questions that should have been directed to my dad. I was embarrassed for the friend, not for my father. (And I experienced plenty of medical providers who spoke to me even when my dad was capable of responding -- in which case my response was more anger than embarrassment.)
• Whenever possible, get to eye-level with a person who has dementia. Standing over someone can make him or her feel intimidated, but sitting or kneeling so you’re eye-to-eye creates inclusion.
• Listen to a person who has dementia, and don’t interrupt. Especially if language has been affected, it may be difficult for a person who has dementia to communicate. Take a deep breath, slow down your own reactions, and listen actively for the meaning behind the words.
• Offer options to a person who has dementia. As the disease progresses, ask yes-or-no questions (“Would you like some lemonade?”) instead of asking an open-ended question (“What would you like to drink?”), but give choices when you can.
• Help a person who has dementia with tasks, but don’t take over tasks she can accomplish. Break down the task into small steps, such as setting out the forks, then setting out the knives, then setting out the spoons instead of setting the table. Letting your loved one do as much as possible will help to maintain those abilities as long as possible and will allow your loved one to feel useful. That sense of being useful may be a component of one’s dignity.
• Give positive feedback whenever possible. A person who has dementia may lose confidence in himself because of losses as the disease progresses. Encourage actions that will help to improve self-confidence and comment. My father can’t do a lot these days, but he loves to pet my dog, and my dog loves it, so I remind him how great he is at caring for Gracie.
• Distinguish between words and behavior consistent with who your loved one is and words or behaviors that are the result of the disease. It’s hard, so hard, to remember that the outrageously nasty thing a loved one just said came from the disease and not from the person who loves you. And it’s painful when a loved one no longer cares about family photos or traditions. Remind yourself that it’s the disease, not the person you love.
• Interact with your loved one as he or she is now, not as he or she used to be. The very best tip for dealing with dementia is staying relentlessly present to life today, letting go of what life used to be, and not anticipating what it will be. That’s a gift for your loved one and for yourself. I have cried more tears than I can count wishing to go back or fearing what may happen, and those times are absolutely wasted. When I can be with my dad as he is today without comparison to another time, we have the opportunity to connect and share some special moments.

There may be specialized instances of treating a person who has dementia with dignity (in bathing, helping with incontinence, and so on) but these general principles are a good start. What would you add? How do you respect your loved one’s dignity? And if you believe that dementia has robbed your loved one of his or her dignity (and you’ve waded through my arguments to the contrary) how do you work to restore that dignity?

 I recently read an article titled How Americans’ refusal to talk about death hurts the elderly. It’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.
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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.

My dad used to get stuck in negative stories. He would hear bad news — anything from a car crash that injured a local family to global tragedy — and he would take the story in, make it personal event if it didn’t actually affect him, and be unable to move on to another topic. I dreaded his finding out anything bad, because I knew he would be anywhere from sad to distraught. After trial and error, I figured out three steps to take that would help him either move past the news or at least deal with it in a way that would cause less distress.

1. Stop the inflow of negative news.
2. Reassure. Tell your parent that everyone is safe. Even if that isn’t true, you may want to “fibulate,” or tell the lie in service to the person you’re caring for. To my mind, it’s better for them to believe that all is well than to be frightened and unable to move through the fear. (And it should go without saying that you’re responsible for your parent’s safety, so you’ll be in the best position to take whatever precautions are necessary, if any.)
3. Distract. Point out less alarming things and try to grab your parent’s attention elsewhere.

These steps are fluid, and you may need to move back and forth among them or be prepared to stay on one step for some time. Being prepared with these steps will help you to help your parent.
What works for you? Please comment below with any tips, ideas, or questions you have.
And please visit the Alzheimer’s Caregiver Minute Facebook page for inspiration and tips, then join the closed ACM Exchange Facebook group to find specific answers and guidance to your caregiving questions.

-by Julie Fleming

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.

-by Julie Fleming

We all have stories about Alzheimer’s, some funny, some tragic, some painful… And we need to laugh together as often as possible. For today’s Real Alzheimer’s Talk, I’m sharing one of my favorite funny stories.

Please share yours as well, either in the comments below, by joining our Facebook group ACM Exchange, or by creating your own video and tagging it with #RealALZTalk. We need to share our stories, so no one affected by Alzheimer’s feels alone and so we break the silence around dementia.

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.
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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.

​Your parent with Alzheimer’s will likely have a hospital stay at some point, and there are three critical steps you need to take:

1. Let hospital staff know your parents has Alzheimer’s
2. Get your parents’ advance directive on file and be sure everyone is clear about its meaning
3. Make the hospital room as familiar as you can

Watch this video for more on advance directives and understanding your parent’s wishes.

by - Julie Fleming

​Surviving Alzheimer’s: Practical  Tips and Soul-Saving Wisdom for Caregivers  appealed to me largely because I found it at a time when I wasn’t sure I would survive my father’s illness. It offers bite-sized tips and stories with support and instruction, making it easy to read in short bits of time. I also appreciated the emphasis on addressing stress and increasing quality of life for both the person with Alzheimer’s and those caring for him. The book teaches a problem-solving framework that will support you throughout your caregiving.
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by - Julie Fleming
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I highlighted A Caregiver’s Guide to Alzheimer’s Disease and read back through my highlights periodically to refresh my own memory. Logically organized, you’ll find it worthwhile to read through the book and then make your own lists of practices to adopt. It’s easy to dip in and out, which makes reading it feasible even if you only have a couple of minutes at a time.

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by - Julie Fleming

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When I found Early Stages, my father had progressed through the stages it addresses. But the lessons are useful even later in the disease because it’s important to understand the progression. It won’t carry you into the depths of caring for your loved one who has the disease, but it will give you a necessary foundation, and if your parent is in the early stages of the disease, this is a must-read book.