Category Archives: alzheimers

It Goes On

alzheimer's, alzheimers, caregiver, caregiving, death, dementia, dying, families, frontotemporal dementia, lewy body dementia, , ,

Her husband had Alzheimer’s, so she became a caregiver. She never wanted to be a caregiver. It’s not like she filled out an application for this job. It’s just what you do when your partner has dementia.

She described it as a roller coaster of a journey, and she resented the trip. There were moments of joy. There was a lot of laughter. But overall she felt cheated. Cheated out of the trips she and her husband planned for after retirement. Cheated out of how she thought she and her husband could provide childcare for the grandkids. Just cheated.

She wanted some time to herself, but she never seemed to have it. She wanted her kids to come over and stay with their dad, but they never did. She told her friends she dreamed of being able to wander around Target aimlessly on a Sunday. And sometimes all she wanted was to be able to take a hot bath without her husband walking in and needing help with something.

She wanted to sleep through the night but hadn’t in a few years. She wished she had the time and energy to put in an old fitness DVD and do a workout. Her friends invited her to go out for dinner once in a while, but they knew she’d say no. Eventually they stopped asking.

Then her husband died.

And the strangest thing happened.

She didn’t know who she was.

Every other role in her life–friend, volunteer, mother, grandma, neighbor, reader, traveler–now seemed unfamiliar and uncomfortable. And she found herself yearning to be a caregiver again.

There was a sense of relief, of course, when she had more freedom. But she also just felt empty.

She didn’t realize it at the time, but the caregiver journey–as difficult as it had been–was a journey that made her proud. She had been a great caregiver to her husband. She felt a sense of accomplishment. When she looked back, she realized that her years of caregiving for her husband were sacred and meaningful.

And yet she still felt resentful and cheated.

But she’d go back.

If she could rewind time and re-live those experiences of bathing her husband and brushing his teeth and making sure he ate, she’d do it in a heart beat. It was exhausting. And frustrating. But it also gave her this feeling of warmth and purpose. It was like she was put on this earth to care for him. And she did care for him. She fulfilled her mission.

She had a hard time finding another role that gave her that sense of purpose. Being a grandma was fun, but her grandkids were getting to the age where they didn’t need her. She started going out with her friends but felt isolated because they couldn’t really relate to what she’d been through. She did some solo travel but it just made her realize that no one really needed her.

And she’s still figuring it out. She signed up at a gym and is doing some group exercise classes. She wants to volunteer at a hospice but the training isn’t for another month. She brings snacks to her grandson’s soccer games. She’s doing some reading on finding a purpose and living a meaningful life and makes fun of herself for the stack of self-help books on her nightstand.

She knows she will get there. She’s surprised that the hardest role she’s even taken on is so hard to let go. She hated all the stuff she now misses, and it doesn’t make sense. She’s angry at herself for not finding more joy in the daily caregiving grind.

We are all constantly re-defining our role and purpose in this life. We are all searching for meaning.

But she’s really doesn’t know why she’s here now, and she has faith she will figure it out in time.

And this brings me to one of my favorite quotes:

In three words I can sum up everything about life: it goes on. –Robert Frost

Just Say No to Comparison

alzheimer's, alzheimers, caregiver, caregiving, death, dementia, depression, , , , ,

It’s the holidays, and my gift to you is that you will hear from me frequently. Just kidding.

Well, not kidding about hearing from me frequently, but kidding about it being a gift. Hopefully you have higher expectations for gifts this year.

But I am here. And I wish I could do more for those of you who read my blog regularly. I appreciate you, and you deserve the best possible holiday season. Maybe you don’t know how to make that happen. Maybe you are flying by the seat of your pants. But I am here and I am rooting you on.

Because the holidays and dementia. It’s a lot.

The holidays are hard. They can be joyful, peaceful, fulfilling, as well. They can be more than one thing.

They can be sad and rewarding. They can be difficult and joyous. They can be depressive and happy. They can be any combination of anything.

It’s not an either/or.

You get to feel whatever you feel, and it may be all over the place if you live with dementia or are a care partner. Or if you’ve lost someone recently. Or even not so recently. Or if you’re divorced or struggling with chronic illness. Or if you are struggling financially. Or if you are going through IVF.

It seems like many of us have complex situations that put us on the holiday struggle bus.

And we watch Hallmark movies (well, I don’t because the plot is the same every time and I am the least romantic person on earth) and have these expectations that our holidays will end on a happy note with a bow wrapping it all up. And then those sappy commercials with those happy harmonious families celebrating together…

Comparison is the thief of joy.

I didn’t make that up. I just Googled it, and it sounds like the quote is attributed to Teddy Roosevelt.

If you prefer, “Comparison is the death of joy” is attributed to Mark Twain. I will go with the Mark Twain version because I lived in towns on the Mississippi for the first 18-ish years of my life.

When we talk about comparison in this context, we think of the comparison between ourselves and others. The comparison between our holidays and the holidays of our neighbors. Our meager light display and the full-blown light show down the street with that giant blow-up reindeer.

Your family has been impacted by dementia. You might look at families you know and even families on TV and in the movies. Your family is different than those families. You will celebrate the holidays in a different way than other families.

When we try to mimic other families, we are often disappointed. We are not them. Even at times when we don’t want to be us, we are still us.

Sometimes the comparison that kills your joy is your comparison of past and present. The holiday season now versus the holiday season 5 years before Mom’s diagnosis. New Year’s Eve last year when Dad was around to celebrate versus now when you watch the ball drop without him.

Sigh.

Your family is not only different from other families but different from how it used to be.

It’s an obvious statement. But think about it for a sec.

Maybe the rituals you’ve always found important, like midnight mass or the all day holiday gathering with the grandkids, don’t work anymore. When you are different, you need to change.

Don’t put square pegs in round holes.

Even if your peg used to be round.

I didn’t make up the first part (although I can’t find who I should credit) but maybe I made up the second part.

Have the best possible day.

If it helps, here is a picture of our kitten, Gladys.

I am pulling out all the stops here, folks.

Calico kitten

Caregiving Superpowers

alzheimer's, alzheimers, caregiver, caregiving, dementia, life

What’s your superpower?

No, I’m serious.

What’s your superpower?

I’ll tell you about mine. I think everything is funny. That’s it. That’s my superpower.

How do I cope with tough crap? I think everything is funny. How do I deal with hard times? I think everything is funny.

That doesn’t mean I don’t take things seriously. You can take things seriously and find humor in them. And I have gotten myself into trouble because I think things are funny and others can’t see humor.

But the universe gave me this gift. And it’s how I survive.

So, caregivers, what is your superpower?

I had this conversation when I visited a caregiver support group a few years ago. I asked about their superpowers, and (once they finally processed the question) they had interesting responses.

One caregiver said her superpower was that she was able to tolerate a very messy house. Another said her superpower was the ability to believe that things were going to get better when evidence suggested otherwise. When one woman told me her superpower was that she was able to get her grocery shopping done in lightning speed to get back home to her husband with dementia, others nodded. Speedy shopping can be a superpower.

You see, caregiver superpowers aren’t about flying, reading a crystal ball, or being invisible. They are skills and attributes we have that make caregiving just a bit more tolerable.

Being able to remain flexible when dementia changes your plans.

Having the patience to answer the same question 15 times in the exact same tone of voice.

Knowing that others will judge the decisions you make but having the confidence to stand firm anyway.

The cooking skills to make a healthy meal in 20 minutes.

If you are a caregiver, you have a few superpowers. I promise. Take a sec and think about what you, as a caregiver, consider a strength.

Maybe you are stressed and frazzled. And I am guessing you might feel useless and incompetent at times. But there are aspects of caregiving where you excel. There are parts of caregiving that come easily to you.

Let’s say someday you are using your current experience and expertise to apply for a position….a position caring for someone living with dementia. Let’s say you are applying for the exact same position you have now. You know, the caregiving job for which you never asked or applied.

What would you say? What would you put in your cover letter? How would you portray yourself in an interview?

Would you mention that you have learned to communicative effectively with someone living with dementia? Are your “therapeutic fibbing” skills top-notch? Are you great at convincing someone with dementia to go to the doctor when they are resistant? Do you have a sense of perspective that allows you to roll with the punches when plans fall apart? Are you effective at assisting someone who needs help getting dressed or brushing their teeth?

Caregiving can be difficult, rewarding, stressful, joyous….and everything all at once. I am sometimes bothered that caregivers never stop to pat themselves on the back for wins. And those caregiving wins? It’s okay to realize that you are often responsible for them.

When your loved one is anxious and you de-escalate a situation, you are allowed to be proud. Perhaps it’s not a victory everyone would understand, but de-escalation of situations might be your superpower, and that’s a pretty awesome superpower.

Maybe your superpower is your knack for finding family-friendly restrooms. Or your commitment to making sure both you and your loved one have a window for a long nap in the afternoon. Perhaps your superpower is being a positive light for others residents and families when you visit the nursing home.

Whatever it is, appreciate it. You may not have picked the caregiver life, but it’s bound to highlight some of your best qualities, and you are destined to pick up new skills along the way.

You may not be thanking God and/or the universe for this tremendous opportunity for personal growth, but it is nevertheless an opportunity for growth—whether you like it or not.

And, if you see me out and about, it is likely I will be laughing. It doesn’t mean I had a good day or things are going well. In fact, I may laugh more when things are going poorly. It’s a coping thing. And I wouldn’t trade it in.

Do What You Love Until You Can’t

alzheimer's, alzheimers, dementia

Recently I was at a social gathering and was asked to talk to a friend of a friend who has been worried about his memory.

I was immediately concerned when the friend of a friend didn’t recognize me and thought we were meeting for the first time (which we were not). We don’t see each other a lot, and maybe I am not that notable, but still…

He’s about 65. He forgets things. He been missing appointments. He still seems to be a decent driver, but he gets lost in familiar areas. GPS maps on his phone no longer make sense to him. And, to his horror, he occasionally struggles to remember what to do when he plays golf with friends. He recently showed up to play without his clubs. When his friends asked where his clubs were, the word clubs didn’t even make sense to him.

He teared up as he told me how concerned he was. He was divorced, and his only child, a daughter, lived about an hour away. He had not told her about his concerns, but he wondered if she had noticed anything.

He had confided these concerns to his primary healthcare provider, who assured him that we all get more forgetful with age. He didn’t even bother to bring it up at their last visit because he knew he’d be dismissed.

Sigh.

I recommended he visit a neurologist. He had some hesitation (because he said he was scared to get bad news) but agreed to try to get a referral.

He asked whether, if he was diagnosed with a type of dementia, he would have to quit driving immediately…if the Department of Motor Vehicles automatically takes your license away. Nope, I told him. Lots of people with dementia continue to drive after diagnosis. Of course, eventually a decision has to be made about when it’s time to stop driving but that decision typically isn’t on the day of diagnosis.

He asked whether, if he was diagnosed with a type of dementia, he would have to stop living alone. Do people with dementia live alone? Sure, they do. I always recommend some check-ins and safeguards, but nothing says you can’t live alone after diagnosis if it’s safe. Eventually there would need to be a discussion of next steps, but action would not need to be immediate.

I realized that this guy thought, upon diagnosis, he’d immediately lose his driver’s license and have to move either to a facility or in with his daughter.

That’s not the way it works.

There is life after dementia.

To be fair, people living with dementia live with a continual sense of loss. Loss of driving capabilities. Loss of the independence of living alone. But those losses don’t happen quickly. It’s not like ripping off a Band-Aid. They happen gradually.

It’s true that individuals living with dementia may have to give up a lot of things on their journey. Opportunities to work and volunteer. Hobbies. Traveling. Family gatherings. Toward the end, the ability to walk and talk and brush your teeth and dress yourself.

I often get asked about the order in which people will lose these abilities. Truth be told, I have no idea. I know someone who is non-verbal but can still text (quite eloquently). I have another friend with dementia who must walk with a cane but is still able to ride a road bike.

I stopped trying to make predictions a long time ago. I was wrong too much, and I don’t like being wrong.

This gentleman, as he talked to me, seemed to be envisioning a future in which he lost everything at once.

He told me he’d have to give up golfing. When I asked why, he shrugged and said he really wasn’t sure. When I said that people with dementia golf, he seemed pretty surprised.

“I’ll make an appointment with a neurologist,” he promised. “But what do I do in the meantime?”

I told him he should just keep doing what he enjoys doing. (And perhaps confide in a few people who he could go to for help and serve as safeguards.)

“And if it is dementia?” he asked.

I told him he should just keep doing what he enjoys doing.

You do what you love until you can’t do it anymore.

That’s not just true for those who live with dementia.

There will be a day that I can no longer teach indoor cycling classes, go paddleboarding, and give lectures (all things I think are fun….yeah, I think public speaking is fun).

There will be a day when this guy can no longer go golfing. But today isn’t that day, and neither is tomorrow.

And you can always borrow clubs if you forget yours.

Caregiving is Hard Because It’s Hard

alzheimer's, alzheimers, caregiver, caregiving, dementia, , , , ,

I want to acknowledge something that we “professionals” do to dementia caregivers.

We have good intentions, of course, but you have every right to roll your eyes at us. We preach taking a break. We tell you that respite will do you well. We say that you need to reward yourself with some self-care.

Great recommendations, obviously. But perhaps it sounds like we don’t know your life.

A break? I am supposed to take a break from what….my life? I don’t see anyone waiting here that’s ready to take over my caregiving responsibilities.

Self-care? How can I take a bath when my husband who has Alzheimer’s might wander out the front door and get lost?

A vacation? What a joke. I would be so stressed out being away from my loved one. And my partner had to quit their job when they were diagnosed so we don’t have the money.

Sure, I recommend you do your best to set up some supports so you’ll have more options. An alarm system? A neighbor to stop over? A short weekend trip if you can find a family member to stay with your loved one?

But I get it.

It’s not that easy.

Meditation? Yoga? Great options. But, as a women once told me, “Meditation is great…until my husband starts screaming and crying because I am in another room and he can’t find me.” The reason you most need meditation may be the reason you can’t make it happen.

As a dementia caregiver, you tell people you’re struggling, and they tell you to get a massage. Or maybe a facial. Or to go shopping to relieve some stress. They tell you that you look tired and you should work on getting more sleep. Ha. These people mean well, but I worry their message carries blame.

You are stressed because you’re not doing these things.

Yep, caregivers, just another thing you are messing up.

But, my friends, you are not struggling and stressed because you’re doing something wrong. It’s because….dementia isn’t easy. Your life isn’t easy. And that’s the nature of the beast here.

Caregiving is hard. You are not stressed because you need a nightly bubble bath and a yoga class. You are stressed because caregiving is hard.

That deserves to be acknowledged.

Why It’s Okay to be a Proud Caregiver: A Story About My Grandma

alzheimer's, alzheimers, cancer, caregiver, caregiving, dementia

This is a story about caregiving.

And it’s a story about my grandmother, Betty Catherine Terry Vickers Mohesky.

She was a caregiver, and she rocked it.

Let me acknowledge that loss is undeniably linked to caregiving.

My grandpa had multiple chronic illnesses. He had cancer. He had diabetes. He eventually had his leg amputated. For ten or so years, we watched his functionality and independence decline. He passed away when I was in grad school.

It is not my intent here to focus on that loss. It’s my intent here to focus on what I saw as a gain.

My grandmother didn’t finish school. Throughout her life, she was a hard worker, but she never had what I’d call a career. It was rare to see her dressed up. She loved fishing, and you’d often see her in stained jean cutoffs or what she called her “highwaters.” When capri pants came back around 2000, she joked that she’d been wearing them all along.

Gallery Photo

She wasn’t sophisticated, fancy, or educated, but she was fierce.

My uncles were in an motor vehicle accident that she attributed (and rightly so) to a poor designed bridge. She pestered the state legislators to modify the bridge. After a young woman died on the bridge, they finally made the changes. After my grandma died, they named the bridge after her. If you are ever driving near Cuba, Missouri, keep your eyes open for the Betty Vickers Memorial Bridge.

But here’s what I want you to know about her…

Caregiving made her better. She learned about blood sugar and the pancreas and blood thinners and kidneys and dialysis. She drove my grandpa an hour each way several times a week for kidney dialysis. She kept up communication with several specialists. She got him to every medical test and procedure and appointment.

When I visited their house, I would scope out this calendar by the house phone (which was just known as “the phone” at the time). There was no Google calendar, just this free calendar that the bank distributed yearly.

It was stacked with medical appointments–sometimes more than one in a day. The wall by the phone was also plastered with business cards of medical offices and services. She kept everything straight. In fact, she made it look easy. I’d hire her as my personal assistant anytime.

When it was time for my grandpa to do home dialysis, she became the master of the equipment and procedure. She would proudly explain to us the steps she had to take to make sure it was sterile. And I’d think it was weird that this tube ran straight from my grandpa’s bladder into the house toilet at night.

Over her years of caregiving, she was forced to learn about a multiple of health conditions. But forced isn’t really the word I’m looking for…she didn’t go looking for these challenges but she embraced them.

She obviously didn’t want my grandpa to have increased medical needs, but she took pride in how she’d learn the ins and outs from his doctors and share info with us. Caregiving threw her into this new world, and she was pretty damn good at navigating this new world.

At the doctor’s office, they called her “Nurse Betty.” And she loved it. She gained a sense of confidence about her knowledge and ability in the area of health care.

It’s only years later that I can see the irony of this…My grandpa’s increased health needs led to a sense of accomplishment for my grandma.

Maybe it’s bittersweet, but when I think of my grandma during this time, I smile with pride.

She took on the challenge. It wasn’t one she was prepared for. She didn’t have the knowledge or education to read medical records, but she figured it out. She asked questions. She advocated for my grandpa. Through the process, she made friends with nurses and the families of fellow patients.

She left the hospital at one point to run to Walmart. A nurse had just complimented a pair of sandals she was wearing. It was important that my grandma proceed to Walmart immediately to buy her an identical pair.

I know she didn’t enjoy my grandpa’s health struggles, but she excelled in the environment she was put in as a result of them. She was a rock star in the caregiver world. She developed new skills. She met new people. In fact, she saw her role as to take care of not only my grandpa but also every other patient, family member, and nurse in that hospital. She’d never call it caregiving. She was just being herself.

My grandma died in 2012. When told she had cancer and had limited time, she responded, “But what will people do without me?”

Then she asked about someone she knew who had recently been admitted across the hall on the palliative care floor.

“That’s just terrible. I hope they are going to be okay,” she said. This was about 72 hours before she passed away.

She taught me a lot of things…but what stands out to me is that she thrived in a world she never asked to be a part of and would have exited in a minute given the opportunity.

She never wanted to provide care for my grandpa. She never wanted him to be chronically ill in the first place. But she didn’t have a choice.

And she was amazing.

She had every right to be proud.

And, those of you who are carers, you have every right to be proud as well. I know you may not feel like you’re rocking it every single day, but you’ve developed skills. You’ve solved problems. You’ve advocated.

Maybe you thought you could never give a shot to a loved one, and now it’s second nature. Maybe you didn’t cook before your wife had Alzheimer’s, and now you can cook a pretty decent meal for two. Maybe you’re a shy person who doesn’t want to bother anyone, and now you’ve learned to tell the nurses when they need to pay more attention to your mom.

Perhaps you feel like a different person than when you started. Maybe you’re more tired and stressed. But maybe, just maybe, you find a sense of accomplishment when you do something as a caregiver that you didn’t think you could do. And you shouldn’t apologize for that.

Caregiving is tough. Don’t feel bad about claiming a reward when you get one.

You got your dad an appointment in neurology when the receptionists originally said they were full. You learned to read that MRI by Googling “how to read an MRI.” You drove to Mayo Clinic and figured out where to park and what building your appointment was in. You convinced your insurance company your wife needed that CT when they originally wouldn’t pay for it. You talked Mom into taking a shower when she hadn’t done so in a week. Yes, those are accomplishments.

Caregiving is full of small–and large–accomplishments.

I give you permission to feel that sense of accomplishment as a caregiver. I know you didn’t want to be here….I know you would prefer if you didn’t need to be a caregiver.

But now that you are here—feel free to admit that you are pretty dang awesome.

Gallery Photo

Dementia and Mental Energy: How Do You Choose to Spend Your Limited and Precious Mental Energy?

alzheimer's, alzheimers, caregiver, caregiving, dementia

Mental energy. Why are we not talking more about mental energy in relation to dementia?

A few days ago I listened to an insightful and unexpectedly funny panel of individuals living with dementia talk about their experiences. The entire conference was great, but no other speakers could really compete with the panelists.

As they sat on a stage in front of a decent-sized audience, they talked about the importance of their advocacy on behalf of people living with dementia. A few mentioned that their advocacy work gave them purpose. All of them described events that they had taken part in and, in many cases, organized. They talked about the public speaking that they do. One man described how he and his wife put together a fundraiser on the fly…and it was overwhelming successful.

Then one of the panelists mentioned that it comes with a cost.

It’s tiring.

Individuals with dementia have limited mental energy (which leads to limited physical energy, by the way).

Let’s say I have 100 units of mental energy. (Actually, I know of no metric of mental energy and I’m making this up as I go.) I can put a lot of mental energy into a few things, or I can put a little mental energy into a lot of things. It’s my choice.

But when my mental energy is gone, it’s gone. And you’ve all been there. A long day at work. The day you took your SATs or GREs or LSATs or had to do a test or evaluation for your job. Just a day when nothing went quite right and you had to spend your whole day fixing stuff.

You’re irritable. You’re frustrated. Maybe you have an outburst. Maybe you withdraw. Maybe you just close your eyes are go to sleep at 7:30pm.

As dementia progresses, those units (you know, the ones I made up) decrease. If a person with dementia used to get 100 units a day, they may get 90, 80, 70….but it’s not consistent by the day. One day you may have more units, and the next day your units are depleted.

Oh, and you can often roll over those units. You can rest one day to have a high energy day the next day because maybe your grandkids are coming over. You can also try to steal from the next day. Maybe today’s the 4th of July and you are committed to going to four cookouts and then the fireworks. If you can’t move tomorrow, you don’t care. We have to be careful with that strategy because sometimes we intend to steal a tiny bit from the next day but end up decimating the whole week’s energy units. (These energy units are starting to sound a bit like Weight Watcher points, aren’t they?)

There are other principles for these energy units. You may know some vampires who steal your mental energy. Maybe a co-worker. Or a family member. Or a really disagreeable checker at your local Target. When you try to steal your energy back from the vampires, you end up wasting additional mental energy. You can and should do your best to protect your mental energy from these vampires.

I will add that I am a work in progress when it comes to not spending mental energy on vampires. Today I let a disagreeable Delta gate agent steal about 27 of my mental energy units in the process of getting a seat assignment.

I spent a lot of time thinking about the panelists living with dementia and their commitment to educating us. And I was grateful to them for using their limited energy in this way. When your energy units become limited for any reason, how you use them needs to become even more intentional. And these individuals chose to spend their mental energy educating folks like me.

One of the principles I cling to in this field is that people living with dementia and their care partners have the right to navigate this disease however they choose.

If you want to spend your precious and limited energy on a cross country camping trip, it’s yours to spend. If you want to spend your precious and limited energy on continuing to work at your job, it’s yours to spend. If you want to spend your precious and limited energy on cooking and keeping your house clean, it’s yours to spend.

Just be intentional. And when you find you’re running out of mental energy too often, it’s time to prioritize.

I realize that I’m not just talking about people living with dementia. I’m looking at everyone….including family care partners who often forget that they can’t do everything, be everywhere, and fix everything.

We all have precious and limited energy. When we can’t increase that energy, our only option is to be wise in how we spend it.

I have a challenge for you this week. When you realize something is taking up too much of your mental energy….when you realize that the cost is too high…just walk away. Or maybe run.

Yesterday I considered buying a sweatshirt at SoulCycle. I looked at the price tag. It was almost $200.

I walked away. It was too high of a price to pay. It wasn’t worth it. It just wasn’t in the budget.

If only I could be so intentional with how I spend my mental energy….

When Dementia Knocks: Update

alzheimer's, alzheimers, caregiver, dementia, frontotemporal dementia, lewy body dementia

Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends.

In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and you feel compelled to “like” the page, you can find it here: https://business.facebook.com/DementiaKnocks/

If you aren’t a Facebook person because you think it’s catty and are sick of seeing your relatives argue about Trump, I get that. Good for you.

It appears in the “business” section of Facebook but don’t worry–I’m not selling you anything (except some bad humor). As you may have realized, I’m seriously opposed to pushing products and services or even recommending them.

AND (man, I’ve been busy) I know have a Twitter handle (@dementiaknocks) for the blog. You can find that here: https://twitter.com/DementiaKnocks

I am hoping that being more involved in social media will reach some individuals I am currently not reaching. I guess this is how the youngsters do it nowadays.

In other blog news, I have a new favorite coffee shop to write. It has a latte called the Optimist–which is blackberry mocha flavored. I feel like I’m getting more optimistic just by drinking it.

 

When Dementialand meets CFland (A Guest Blog from a Friend)

alzheimer's, alzheimers, dementia, dying

Today we take a break from Q’s and their corresponding A’s for a special guest blog post from my thoughtful friend, Drew Dotson. You might remember Drew as the woman who teaches improv classes and helped me see that some of the same skills and perspectives that can be used in improv theater can also be used with individuals who have dementia.

She was also one of my cheerleaders in the early stages of this blog when I was wondering if anyone would even be interested in reading what I had to say. I was surprised when she could relate to some of my blog posts on the basis of her own diagnosis, which is very different from Alzheimer’s and related dementias. 

You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40 years. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited? How do you appreciate what you’ve got right in front of you when (as Drew puts it) it’s a one-way street heading in the less-than-fortunate direction?

So here is the adorable and incredibly insightful Drew on her thoughts on living in the moment without fear of the future….

I was 8 years old. I went to the doctor for a routine appointment, and I left there a changed person. I guess, by most standards, having cystic fibrosis isn’t routine, but this appointment wasn’t out of the ordinary. CF is a genetic disease primarily affecting the lungs and digestive system due to an excess of thick mucus. I knew I had CF, did breathing treatments every day, took pills to aid in digestion, etc. However, I didn’t realize that CF was anything more than a part of my day-to-day routine.

Then, as my mom stood at the front desk to schedule my next appointment, I browsed the bulletin boards hanging in the clinic. I glanced at a feel-good article about a man who had run a long-distance race, which was “remarkable considering he was 31 years old, which is beyond the life expectancy for someone with cystic fibrosis.” I froze. I reread the line: “beyond the life expectancy for someone with cystic fibrosis.” I began to process. Beyond the life expectancy? At 31 years old? But 31 is so young. And, if 31 is beyond the life expectancy, what is the life expectancy?

Sometimes, in our lives, it can be difficult to pinpoint the exact moment when things change. Some changes happen gradually and, before you know it, things are different. Other times, there is a specific event – a diagnosis, an important loss, surprising news – when you can say, in that moment, “This changes everything.”

Having simply considered CF to be something I handled every day, learning its fatality was heartbreaking. I felt so sad. I felt so hopeless. The third grade should be a happy, carefree time, with homework being the only thing to slow a child down. But I’d learned devastating news that would impact the rest of my life. There was no turning back; there was no undoing it.

From this distinct moment on, I began living a life centered on fear. It may not have always shown outwardly, but it was always there, lingering. I remember crying a lot, particularly at nights, knowing that I would never get to grow old. I had a lot of career aspirations, like most kids, but the future suddenly became a source of anxiety. I should have been looking forward to things, but instead began living with an awful feeling of dread.

This future was always weighing heavily on my heart. The fact of the matter is that CF is progressive. CF is irreversible. CF is fatal. Knowing this information, it’s unrealistic to think, ‘Well, maybe things will get better!’ As blunt as it sounds, it’s a one-way street heading in the less-than-fortunate direction. There may be medical advancements – maybe even a cure one day – but those are the maybes; they aren’t the current reality.

Growing older was always a struggle for me because it brought me closer and closer to the inevitable.  I realized I was more afraid of dying than I was afraid of not living. Yes, I will repeat that. I was more afraid to die than to not live. I was more afraid of the time I wouldn’t have than failing to use the time I did have. I was concerned about being robbed of life instead of appreciating the opportunities right before me.

Yes, CF is progressive. It is irreversible. It is fatal. I couldn’t change any of these things, but I could work to change my perspective. If I focused on the darkest parts – the struggle, the decline, the end – I might miss the sources of light – feeling loved, sharing a laugh, experiencing joy. Although the future carried with it a lot of uncertainty, I could no longer allow myself to overlook the precious moment that is today.

This wasn’t easy. It wasn’t like, ‘Okay, starting tomorrow, I’m going to be grateful. Done.’ It has been a process, and it will continue to be. Each day is different. On days when CF is front and center – like when I’m sick, when I see doctor after doctor, etc. – it can be especially challenging. However, I realized that the end could truly only interfere with the now if I let it. The present is this moment alone. If I can be in a moment without spiraling into thoughts of what used to be or what will come, I can find peace.

Although dementia and CF are not scientifically similar, there are many parallels. We have unpredictable lives due to our conditions. We know we can’t undo the damage that has already been done, but we can hope that things progress slowly and that we’re one of the best-case scenarios. Likewise, we longingly wish for a cure, knowing that we may not benefit from it, but maybe, one day, nobody will go through this.

In Dementialand and CFland alike, the future is a source of anxiety. While we don’t know the exact timeline, we know that there will be a decline. We redefine what “normal” means based on the current situation. We reminisce about how things used to be, and we worry about what things will come to be. The progression, for the most part, is beyond our control. However, we can do our best to keep “the end” from completely overshadowing the beauty in “the now.”

It can be hard to maintain a positive perspective when dealing with so much uncertainty. It takes conscious work, but it can be done. With so many factors beyond our control, the best way we can take charge is by being present. Imagine seeing your loved one with dementia smile and feeling joy rush into your heart. It may not be the smile it used to be. You may have fears of that smile going away. But that smile is still a smile, and it is joyous. When those moments of anxiety begin to creep in, remember that the feelings are only there because you care so deeply about someone. If that thought can be cycled back into something positive – love for someone – then you can resume your time in “the now.”

We may not be able to change the prognosis, but we can keep our focus on the present. By honing in on moments of delight, we can continue to live in the light.

Drew Dotson
To help Drew cure CF, visit: http://fightcf.cff.org/goto/drewdotson.

When You Are Accused of Being a Diva in Dementialand

alzheimer's, alzheimers, caregiver, caregiving, dementia, families

Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.

D

Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.