There's no place like home

There's no place like home

He was lost. Confused. Unsure where he just was and how to get back to that place, the downstairs living room. You could see the uncertainty in his eyes.

Imagine visiting a place that you've visited for years with people who aren't just like family. They ARE family. A place you've cumulatively spent years of your life and yet on your most recent visit, getting lost there. 

There's been a lot of consistency in our travels to England over the years. One of my aunts and uncles, my mom's brother and sister in law, has been in the same house since before I can remember. Like usual, we began and ended our trip in their older home. It's a gorgeous, delightful, large home that I could find my way around in while blindfolded. 

Since the mid 90's, this home has been our base for all our visits to England. During each visit, we spend a few days with Alan and Margaret, getting settled in and catching up over pots of tea and G&Ts....(or at least Margaret and I catch up over G&Ts.) 

At my aunt and uncle's, my parents always sleep in my cousin Louise's old bedroom. The second floor, where the bedrooms and most bathrooms are located, has a distinct layout to it. There are hallways and mini-hallways off of each other. Imagine an "L" shaped hallway with rooms off of rooms and bedrooms with multiple doors. At one end are three bathrooms - my aunt's, my uncle's and then a toilet room in the middle. 

During this visit, I saw their home layout through my dad's eyes. There were multiple moments when my dad was confused as to how to get back to the living room, the room we were just in, having tea.

Quality time with my aunt, uncle and parents in England - Summer 2017

Quality time with my aunt, uncle and parents in England - Summer 2017

During one moment, which repeated itself often, I was in my bedroom, just next to my parent's room. And I saw my dad out of the corner of my eye, walking back and forth in the hallway. I just knew he was lost as there was no other reason for him to walk back and forth like that. And honestly, I just instinctively knew as this is a common occurrence.  

We've all had those moments - when I would bet the farm something I just had in my hand and had since put down was "right here, I SWEAR!" Or I would swear that "this has to be where it is." But with some thought processing, I can retrace my steps, recall when I last had the thing and end up discovering it. 

My dad's brain doesn't work that way. He doesn't think, "I'm in my bedroom which isn't on the same floor as the living room." Or "I was downstairs and came upstairs to brush my teeth so I just need to go back downstairs."

So he gets lost. Easily. 

It's not a problem to jump in and lovingly help my dad get back to where he wants to be.  The helper in me jumps up as quick as possible and intercepts so as to save him any more confusion. I feel complete to point him to the stairs or better yet, walk down with him and steal a few moments with him. But it tears my heart out to see the uncertainty and fog in his mind, the lack of confidence that is born from the uncertainty.

To care for those who once cared for us is one of the highest honors.

I stand in the room where I'm sleeping at my aunt and uncle's home. In front of me I see, gorgeous, tall door with high doorknobs and keyholes. I see three bathrooms at the other end of the hallway and can imagine how easy it is to wonder, "which one is for me?" Or perhaps I use just the toilet room and wonder where the sink is. 

The room where my parents sleep has a door to the room next door and 6 inches from that, is the door to the hallway. It's in those options, in the choose your own adventure of leaving the bedroom where the confusion lies. 

There's so much I take for granted. In fact, the list is super long because I don't even realize all the brain processing I take for granted. But as I see the world, more and more through my dad's eyes, my blessings pile up. 

Personally I love going to new places. I love adventure and discovering things I don't know, people I've never met, foods I've never tried and places I've never seen. 

I'm okay with the unknown, in fact I embrace it. I know questions to ask to learn more. I have an innate understanding that I'll figure it out. And if I end up in the wrong room or bathroom (always interesting when that happens) or place, I can manage my way out of it....never led by confusion. 

Yet my dad is unsure. Home, where my parents live, is familiar.....yet even then he has his moments. At my parent's place, he has his routine (which you can't crack no matter how much you want him to move quicker!) It's a safe place for him to be.  I've come to realize and understand this. He knows (for now) what's behind each door. He knows (for now) when he's in his upstairs bedroom, how to get to the family room. 

When traveling to other familiar places, places I would feasibly consider home, the holes + gaps in my dad's memory and brain become more apparent. 

There truly is no place like home. 

Dementia makes holiday cards and gifts a team effort

Dementia makes holiday cards and gifts a team effort

I sit here, on the eve of heading to my parents' for Christmas, excited to see them (and the dog. #truth) Bummed my brother is out at sea so we won't be a family of four this holiday season. 

I'm packed. I've checked into my southwest flight (B49 - could be worse for my boarding position) and am ready to go. 

I don't have much on my agenda while back East. A handful of friends to see, but truth be told, my plan, whenever at my parents' is to do nothing. I didn't grow up there so I have zero obligation to "see people and catch up" when I'm home.

It's quite lovely and I'm appreciative of the books, fireplace sittings and snuggles with the dog that await me. 

But I will go off on an adventure with my dad to Walgreens. 

He needs to buy my mom a Christmas card. 

This is how we do the holidays and ensure that my dad is part of it. Inevitably if I haven't mentioned it to him, a few days out from my mom's birthday, mother's day, their anniversary or Christmas, he'll check in with me and ask me if I know what my mom wants. 

And it goes without saying, that even if I have talked to him about what he's getting her (read - she tells me what she wants, I buy it, wrap it and give it to my dad to give to her), 9/10 out of time, he doesn't remember those conversations. We'll have these conversations ad nauseam whenever we talk, leading up to whatever celebration is around the corner.  Ahhh, dementia. 

My parents, Christmas 2015

My parents, Christmas 2015

But the card. How does he get a card? There used to be a cute little diner, corner store kinda  thing near my parents where he could walk over and get a card. It might have had some kittens on the front wishing you a happy birthday, but who cares. The message is always on point and full of love.

Alas, that card shop is gone and there's nothing within walking distance. He hasn't driven in years (except for a couple times when he snuck the car!!!!!!) He did ride his bike miles down the street one day, along a busy road with no shoulder and no helmet. I freaked out when I heard that one. Ahhh, dementia.....

So either my brother or I, depends on who is around will scoop him up and off we go to Walgreens. On some occasions, I've bought him a card to give to my mom and sent it home with mine. 

The challenge is then having him remember where he put it after he signed and sealed it. Ahhh, dementia...

I remember one occasion when I was home to my parents' place and it must have been late spring. This I know because it was before, but not too far off from my parent's anniversary (the 23rd of June) and my mom's birthday (the 3rd of July.)

Off we went to Walgreens, bought all the appropriate cards, signed 'em & sealed 'em. Then I put them, along with her gift, in my bedroom, out of sight from my mom. But in a place I'd remember. You'd better believe my dad asked me for weeks what we were doing for my mom's birthday as he didn't remember any of this. Ahhh, dementia. 

So if you're looking for me on Thursday, I'll be in the card aisle with my dad. His present for her is already bought, wrapped and packed in my carry on for tomorrow. And my dad will have just the same level of surprise and joy when my mom opens it. Ahhh, dementia.

Happy holidsay. I hope it's magical, cozy and full of sweet memories (ironic?!) I know mine will be. 


We had a moment, over cowboy boots

We had a moment, over cowboy boots

Moments with my dad, when he leaves a footprint on my heart, are few and far between these days. 

It’s hard to connect with him. Not for lack of trying. 

Sometimes the moment is lost in giving him context to understand the situation and he just doesn’t get it. In the minutes after explaining something to him and then bringing it back to my original comment, the moment is long lost. 

When they do happen, they grab me and don’t let go. It’s as if life has hit pause and the smells, the feel, the touch, the everything are in a time capsule, forever saved. 

It was the first Friday of October.

My parents and I were strolling down Santa Fe Street in Denver, taking in the First Friday art walk. There was a lot going on. I was soaking it all up but my dad was lost, trying to figure out why my mom and I were popping in and out of fun stories, art galleries and photography studios checking out strangers’ art. 

We turned the corner and entered the Metropolitan State University Center for the Visual Arts and became art.

The entire exhibit was interactive and live. People were walking around in character, seemingly as just another participant, until you caught their eye and realized that they too, were part of the exhibit. We were encouraged to reach into a task box and do whatever it said on the piece of paper we selected. 

Enthusiastically, I reached in and unfolded my little piece of paper. 

“Draw something two feet tall with wings."

A bird came to mind. 

I turned to my dad and said, "Pops, draw with me. What do you think we should do?"

He drew a blank stare and said “I don’t know. Whatever you want. This is your thing.”  He seemed agitated but I've learned not to take it personally.

I’m also learning that open ended questions are tricky for him. Asking him what he thinks will happen, or what is his favorite this that or the other are really tough. He looks like a deer in headlights and gets flustered trying to respond. It’s much better to ask with options or direction.

"Pops, should we draw a bird or an ostrich?"

We had a blank canvas in front of us as there was butcher paper covering all the walls.

We were encouraged to grab something to create and have at it (If that was our chosen task.)  I thought it would be fun to be childlike and just draw without much direction.

My dad on the other hand didn’t join me in my enthusiasm for this idea. 

So I narrowed my questions and give him some options with simple answers. Nothing too elaborate, but with loving encouragement and support inviting him to join me in this creative experience. 

I didn’t want to do it alone. Writing on the walls is always much more fun with others right?

So we settled on a fun play on the idea of “two feet tall” deciding on cowboy boots (100% because the woman next to me was wearing cowboy boots.)

I sketched up some cowboy boots, and gave them some wings. 

My dad still hadn’t joined me yet. I could see in his eyes that he was lost. Not understanding why on earth we were doing this and why on earth I thought it was so much fun.

So I invited him to color in my design with me. Grabbing the bin of crayons from the table, I held it in front of him, asking him to pick a color.

He grabbed a brown crayon and we were off. Found him a stool to sit on as he was bending over to color in and it just wasn’t working.

Interesting to watch him awkwardly leaning down, trying to maneuver his body into good coloring positioning, not once thinking of sitting instead of standing. My mom grabbed him a stool and pushed it in his direction. We both breathed a collective sigh of relief when his butt landed solidly in it.

My dad and I colored, a simple child like activity. It does all come full circle doesn’t it?

The moment, all in was was 10 minutes, tops If that. But it’s a memory that I couldn’t, if I wanted to, ever, ever shake.

I’ve always assume that memories like this, a shared, rare special connection when we, however briefly were on the same plain, locking eyes with my dad, laughing about our cowboy boots with wings, are stored somewhere in our brain. 

This moment however, is stored in my heart. 

Thanks dad.  I love you.

Is dementia like a cruise ship?

Is dementia like a cruise ship?

The hallways are narrow. Hotel like, but not wide enough for two people to pass with ease. 

The left and right side, on floors 2-4 and 6-10 are identical. 

There’s a forward and a back, which is definitely important to know, although that fact has yet to come in handy. I’m waiting….

I turn a corner one can only assume is a dead-end…but it leads me to another nook and cranny I’ve yet to explore. 

Certain cafes are only on certain floors on certain sides. 

Was that the hospitality suite on level 5 and guest services on level 4….or do I have that backwards? And the business center - that’s level 6..I think.

The colony club shouldn’t be confused with the schooner something or other. But you’ve got to go through the schooner something or other to visit the colony club.  That I know. 

I feel like I’m going around in circles. 

I see the world through my dad’s eyes.

And a cruise is no place for someone with dementia. 

Perhaps you think that it would be a good idea because they couldn’t get lost, in the sense of wander off, like out the front door, down and the street and hop a bus into town. 

Sure, that can’t happen. But another kind of scary lost can happen. 

As far as I know, I’ve got most of my wits about me (you may argue the contrary) and I’ve most definitely gotten confused

Is it left off the elevators or right? 

Pretty sure it’s  left off the elevators. My brain got confused and also turned left off the stairs, which face the elevators…so that left off the stairs should’ve been a right. 

So I regroup. Stand in the middle, turn myself around and try and remember which way I head when stepping off the elevators.

Okay, left off elevators. Right off the stairs. 

Got it. Or do I?

Now, is my room forward or aft? Shiiiiiit.

I’ve no idea. I’m room 3524 and the sign says rooms 3600-3500 are that way. But am I at the very end of this hallway or kinda closer to the beginning of the other one?

Each and every day, no matter where I am, I see the world through my dad’s eyes. The situations I take for granted but trip him up and muddle him around.

A cruise ship is really tough to navigate for someone who has all their wits about them, (debatable as that may be). 

A lot of how we get around in our day to day is via landmarks that are unique.

A statue. That blue house. The pizza joint on the corner. Turn at the speed sign after Town Hall.

We lose those markers on a cruise ship. With each and every move up and down a level, I’ve got to quickly check in - Where am I? Where am I going? What do I remember/know about where I’m going (have I been there before and how did I do it?) 

There seems to be duplicate points of reference for most things.

Pool on the 11th floor in the front part of the ship with the DJ booth and movie screen or the one just next to that in the solarium with a statue of an elephant? Or both?

I wonder, as I navigate this cruise ship, for 5 long days, if this is what it’s like each and every day for my dad.

My luxury?

Unlike my dad, I can get off this cruise ship. 

Coming out of the shadows

Coming out of the shadows

In 2003, my dad was diagnosed with early onset dementia, frontal temporal lobe dementia to be exact. I was 24 years old. He was 60.

It's something I've only ever shared with close, close friends.

Dementia has a stigma. The Big A. Nursing homes. Forgetfulness. Drooling. Old. Alzheimer's and dementia are used interchangeably when in fact they aren't the same thing. Frontal Temporal Lobe Dementia and Alzheimer's are a few types of dementia. And most people who have it aren't in a wheelchair at a nursing home, drooling with no idea of who anyone is.

Yes, my dad knows who I am. Yes, my dad struggles with short term memory but he can recall with great detail things from his childhood or when he captained a swift boat in Vietnam over 40 years ago. It's fascinating (and hard) to watch how the brain does, and doesn't work.

For years, I was embarrassed because I didn't know anyone else who had a parent diagnosed with dementia. I didn't know how to talk about it. Or that actually, I need to talk about it. It's taken me about 13 years to finally connect with other people my age who can say "I get it." There's an amazing power in those 3 words and I'm thankful to those people who have given me strength (Ashley BornancinCathy BarrickSara Allen Abbott to name a few) to share my story.

As you can only imagine, it's an interesting experience to have someone so close to me who is slowly disappearing, so to speak. I wouldn't wish this on my worst enemy.

Yet every day I'm thankful that my dad is here, when I have many friends whose parents have passed. My relationship dynamic with my dad has changed over the years and interestingly/oddly enough, this chapter is the one filled with the most compassion and love.

Few months back, I took to writing a bit about my experience. I didn't know then what that would lead to (and I still don't) but in light of it being Frontaltemporal Lobe Dementia Awareness week, I'm stepping out of the shadows and sharing my story. You can see more about that below.

While I can't go back in time and save myself tears and heartache in dealing with dementia (which are inevitable), I hope moving forward that I can lighten someone else's pain and let them know they aren't alone.

Dementia doesn't mean just memory loss. Dementia is NOT an inevitable part of getting older. Dementia affects women more than men. There are currently no cures. Dementia doesn't discriminate. In 2016, dementia is costing our society more than $236 BILLION.

If you know someone who has a parent with early onset dementia, please share this post with them. Ask me questions. I'm happy to share my story and talk about it.

And remember that "Dementia doesn't rob someone of their dignity. It's our reaction to it that does."  Teepa Snow

xx Johanna

Five incredible Alzheimers facts you probably didn't know.

Five incredible Alzheimers facts you probably didn't know.

An interesting article, via David Perlmutter, just crossed my virtual desk aka my gmail inbox. It stopped my mindless scroll through email and definitely got my attention. Mission accomplished.

There are loads of things I don't know about Alzheimers, although I'm learning more each and every day. While my dad doesn't have Alzheimers, I still though that it was educational to share.

Thank you to Dr. David Perlmutter and his team for pulling together. 

 How many facts did you know before reading?

  • Alzheimer’s is treatable and reversible. We are constantly presented with the notion that “while there is no treatment of cure for Alzheimer’s, medical science may one day find a solution.” The truth is that researchers have now reversed the condition! Dale Bredesen, and his colleagues at the Buck Institute, have used a novel approach to actually reverse Alzheimer’s in a small sample of patients. Rather that attempt to develop a single drug, the magic bullet approach to disease, Bredesen’s team leveraged 36 different interventions including reducing blood sugar, increasing physical exercise, lowering homocysteine, optimizing vitamin D and regulating hormones, all of which helped to pave the way for Alzheimer’s patients to regain cognitive function.
  • Alzheimer’s disease is not inherited. Medical research, like the work of Dr. Barnes cited above, clearly supports the role of lifestyle factors (that means choices) in determining a person’s risk for Alzheimer’s disease. Yes, a person may be at increased risk for the disease by virtue of his or her inheritance, but that doesn’t mean the disease will manifest. Similarly, plenty of people develop Alzheimer’s without having any family member with the disease. Again, the point is that each and every one of us can make choices that go a long way towards determining whether or not Alzheimer’s will be our destiny.
  • Alzheimer’s is not a disease caused by aging of the brain. No doubt the risk of Alzheimer’s goes up with age to the extent that by age 85, a person’s risk is about 50%. But analysis of current trends shows that the disease is manifesting in younger and younger people, and even more so in developed countries. Again, this only highlights the critical role of lifestyle choices, and not just genetic risk factors.
  • Better hygiene may be associated with increased Alzheimer’s risk. Alzheimer’s is related to changes in immune function. Living in an industrialized country limits our contact with bacteria and other microbes, and this may actually lead to a less robust, less balanced immune system. As researchers at the University of Cambridge recently reported:

High-income, highly industrialized countries with large urban areas and better hygiene exhibit much higher rates of Alzheimer’s… sanitized environments in developed nations result in far less exposure to a diverse range of bacteria, viruses and other microorganisms which might actually cause the immune system to develop poorly, exposing the brain to the inflammation associated with Alzheimer’s disease

Their findings revealed that the relationship between a nation’s wealth, hygiene and Alzheimer’s rates is “very significant.”

Does this article impact how you approach your diet and lifestyle?

Today marks 43 years.

Today marks 43 years.

Today, June 23rd is my parent's wedding anniversary.

Anytime in conversation when I mention that my parents are still married, jaws drop (unfortunately not as common as it used to be round these parts.) Of course people always question how many years into it are they. 

Today the answer is 43 which also blows people away. 

What's interesting to me is that people always say "How great. That's amazing. They must be so in love."

I just smile and nod, not caring to get into it. 

It's not been an easy 43 years. I recall one or two times when I was a kid, high schooler aged and younger when I thought for sure my parents were going to separate and divorce. They weren't happy. Their marriage wasn't working. 

Yes, anyone who is married knows, and can attest to times when not everything is coming up roses.  Marriage, like any relationship you care about, takes work - some times more than other times. It's an investment of blood, sweat and tears, 'til death do you part.

This is a hard post for me to write because what I don't want is for this to be my commentary on my parent's marriage or to try and convey my experience of their marriage through a combination of a couple hundred words on the page. 

I want this to be a recognition and a celebration of them. They're still making it. They are still together, for good times and bad, 'til death do they part. It's not the partnership either one of them signed up for....but they are still in the game. 

And honestly, I'm not sure if each of them would describe it still as a partnership. Quite often and for years, I would project my own anger and resentment onto my mom and assume that she was pissed off at the hand that she was dealt. I would assume that she was super duper resentful of my dad for "putting her into this position."

I would imagine that my mom was jealous and quite envious of all other couples, who upon retirement were up traveling the world, picking up new sports and friends with other sporty, adventurous, curiosity minded couples who become snowbirds, or had a place in Portugal for the lifestyle. 

I would be mad, for my mom, that she can't just come visit me for a long weekend. I would be mad for my mom that she couldn't have a "girls weekend" with some of her near and dear friends. I mean, she can leave, but it takes some SEROUS planning and it ain't easy. There's a lot to consider about how to take care of and look after my dad. It's not as easy as just having another adult in the house.

Hell, my mom can't even leave for more than a few hours at a time. My mom's inability to be free and independent has made me really mad at times because it's robbed me of experiences that I'd love to have with her. 

And I truly believe that if my mom had a willing and able partner, that she would love that freedom and exploration. I could see in another lifetime, her post-retirement years being ones racking up frequent flier miles with someone by her side who can share in what they are doing together. 

As my mom is literally a week away from retirement and her new chapter begins, I've really come around to seeing the love and caring between my parents. I didn't see if for a long time. I defined it differently than I do now and imagined it unfolding in a different way. But I've since learned to expand my definition and not be so judgmental. 

The thing that makes this situation with my dad tricky is that he's seemingly oblivious, so it's kinda hard to get back at me. I mean, we do and it happens, but it's not his fault. do you get mad at someone who doesn't engage with you? (I mean that in itself is infuriating.) 

But he loves. He unconditionally loves. And unconditionally supports. With zero judgment. And thinks my mom is the best (as she is) and he loves her. 

Sure he drives my mom absolutely batty  and up the wall. Just last week, he took the deck door apart because he thought it was wonky after my mom asked him a million and one times not to touch it. Took it apart and had no clue as to how to put it back together. 

My mom, understandably, went through the roof. Because now they can't let the dog out onto the back deck without supervision. And now my mom has to figure out how to put a deck door thingy back together again.

But I digress. 

My parent's 43rd wedding anniversary. 

Hats off to them. I love them both dearly and I appreciate the lessons their marriage and relationship has taught me about life and love. 

The Circle of Life

The Circle of Life

I get it. As one person dies, another is born. We come from the Earth and we end up back in the earth when our time is over. 

You could be super practical about how the circle unfolds.  We are born, move to diapers, then pull ups, transitioning to big kid pants and then back to pull ups and adult diapers before we move onto our next chapter.

As little ones are learning to walk, they grab onto tables, chairs and eventually playthings with wheels - providing stability and making walking a bit easier. On the other end of the circle, adult walkers are introduced (just not as pretty and colorful as the kid version).

It could be said I’ve been in the middle of the circle for awhile now. Been out of diapers for decades, no need for walking assistance and pretty much doing well on my own for years now. 

With each passing day, I move further and further from the beginning of the circle, from the start of new possibilities. I see the end. I see how loved ones are moving over the peak of the circle (if that’s even possible) and heading towards where the circle brings closure before a new one begins.

Being an incredibly empathetic person, I see the world through the eyes of my parents and their peers. I sympathize with them when we walk into places that have bad acoustics which makes for tricky conversation. I pause to give an extra helping hand with they are balancing extra groceries or bags. 

My dad’s dementia has become my new lens on life. Until recently when I saw the world through the eyes of a three year old. 

Dear dear  friends, Ian and his wife Ali, along with their two daughters (Matilda 3 and Hazel 1) recently visited me in Boulder, CO. It was such a delight to explore Colorado, visit Rocky Mountain National Park and see the world through the eyes of Matilda, an inquisitive and  adventurous little girl. 

As their trip was wrapping up, and we were sitting having the most delicious lunch at the St Julien hotel in town, my friend Ian asked me how my dad was doing. I shared that he’s stable and how I’ve found comfort in recent weeks after connecting with others who have a parent with early onset. 

Ali asked me what it’s like, what the experience of loving someone with early onset dementia is like.  She asked me if he still knows who I am and can be alone during the day. 

I paused before I answered, the clinking of everyone’s lunch dishes all around me. 

I thought for a moment, always searching for the right words, the perfect words to convey what it’s like to love a parent with dementia. 

Matilda banged her glass on the table and loudly asked for more watermelon, or melanie as she calls it. 

I looked directly at her and the circle of life, came full circle.

Smiling, I responded to Ali and said “It’s kinda like living with a 3 year old.”

Similar to walking down the street with Matilda, we have to keep an eye on my dad at all times because he could, with no bad intentions, wander off and get distracted by the street performer, ice cream vendor or cute dog. He won’t tell us where he’s going  which inevitably results with us in a flurry of panic until we find him again. 

Sorta like when Matilda wanders off to do the same. 

Similar to walking down the street with Matilda, we have to turn to my dad and encourage him to keep walking. He walks, he’s with us, but he’s always 10 or so feet behind, never keeping the same pace. So we stop and start frequently as we wait and encourage him to join us.

Sorta like when Matilda walks down the street.  

Similar to walking down the street with Matilda, there’s a lot of repeat questions with my dad about “where are we going?”, “why are we doing this” or “what are we doing next?” 

Sorta like when Matilda walks down the street. 

Similar to walking down the street with Matilda, my dad is incredibly friendly with no hesitation  to stop along the way and talk with strangers, even sharing personal stories and anecdotes. There’s no barrier to stories he keeps private and what news he shares with strangers within 5 minutes of meeting them.

Sorta like when Matilda walks down the street and manages to make friends with everyone she meets, announcing that she has a little sister and lives in OH to anyone who will listen (and most people are captivated by her.)

While my dad isn’t in diapers (and hopefully far from it) nor does he need a walker, spending time with a three year old, highlights this circle of life. 

Our parents care for us and see the world through our baby eyes. In turn, we care for them and see the world through their eyes.

The circle of life.

Find your people

Find your people

It all started with a tweet.  I'm not someone who tweets often, or ever really. But there I was, composing my 140 characters. 

What a game changer.

For 13 years, I didn't ever meet or know anyone else who had a parent with dementia. But I knew I wasn't alone. And I was clueless as to how to find these people. 

My dad's dementia sure wasn't something I talked about publicly and we all know that the Big A (Alzheimer's) isn't something that crops up in conversation, just after "how's the weather?" and before "how's the family?"

Don't ask me what compelled me to put something so private in a domain so public. 

Those 140 characters have opened doors for me and made connections I didn't dream possible. 

Thanks to the #dementia hashtag, it came across a couple profiles of people who are active in the dementia community and/or have a parent with dementia. Just what I was hoping. 

Within a week, I'd connected with, over the phone, over 5 people who had a parent with dementia. Strangers with whom I felt an immediate connection because they can say "I get it."

Three words whose power I never felt before. 

If you feel like you're alone dealing with issue of early onset of dementia with a loved one, find your tribe. 

There's places to connect on my Resources page.

Google Blondes vs Brunettes football, check out the local chapter of your Alzheimer's Association (or other related dementias), join a google hangout organized by the Alz Association for young caregivers, email me or send off a tweet as I did.

Find the people who can say to you "I get it."

I used to despise this question.

I used to despise this question.

"Oh hi Johanna. How are you? How's Boulder? How's your family?"

Then, with either a lowered pitch of their voice, or delivered with a thread of anxiousness woven in came "How's your dad?"

Ugh. How I've hated that question for years. 13 long years. 

My dad is my dad. My dad is alive. My dad, relatively speaking, is doing well. 

(What does the realllly mean anyway?)

My parents dancing at a cousin's wedding in Boston, 2015

My parents dancing at a cousin's wedding in Boston, 2015

For the longest time, I never knew how to answer that question. Truthfully, that question was tricky because there was no good answer. I never really knew what people meant by asking it and again, it's all relative.

Do I share that he's lost, misplaced and forgotten his wallet only 4 times this week vs the "normal" weekly one time occurrence?

Do I share that he kinda just ghosted out of the room and went to bed without saying good night to anyone?

Do I share that while watching a Patriots game he forgot some rules of the game?

Do I share that he decided to "fix" the bolts in the front door knob panel which translates to him taking the entire thing apart, strewing tiny nuts and bolts everywhere and leaving the door wide open without a knob? In the middle of January?

The more I think about this, the more I think that I don't like the question because it seemed to imply something was really drastically wrong with my dad. Asked about in a way that one would ask about a co-worker, neighbour or friend who just had a really tragic accident happen and lost a leg. Or their +1 ran off with the secretary kinda thing.

I know that's not always the case and people are asking because they care. That much I do know and understand.

It wasn't the asking or the concern of people. I'm grateful people ask. 

It was more just how to answer it that tripped me up.

If I said "He's great! He's fine!" then that would be that and the conversation would move on. 

I would wonder, does he deserve more than that? Do I share with people a bit about what's going on?

It's hard to find the balance between a short 4 word answer and opening the door, sharing the latest development in his dementia which might just be too personal for people. I've never been good at finding that balance with anything. 

But now I've got an answer.

I reply with "He's steady."

Because he is. He has been living with this disease for over 13 years now. In that time frame, a lot of people I've met have lost their parent to early onset after a very sharp, quick and ugly decline. But my pops is still here and he's holding steady. 

So are we. Taking it one day at a time.

Love you Pops. xx 


Joining his conversation about Australia

Joining his conversation about Australia

If you've ever tried talking with someone with dementia, it can be an interesting, entertaining or downright frustrating conversation. 

It doesn't matter the stage of the journey that your loved one is in. As soon as dementia starts to rear it's ugly head, conversation is affected.  Difficulties with language occur in all stages of dementia. 

Sometimes it's forgotten or misplaced words. Other times it's the same cycle of questions on repeat - even within the same conversation. 

Conversation could begin with a jumble of words that make sense, but are totally out of context. 

Why one earth is my dad talking about Australia AGAIN?!?! For the 3rd time this afternoon. If you didn't know better, you'd think he'd just come back from a trip Down Under. Instead, he last stepped foot in Oz in the 60's while on a R&R trip during his service in Vietnam. 

But oddly, when my dad talks about Australia, something in him lights up (This also happens when talking about playing baseball in his neighbourhood streets of Boston, growing up next door to Red Sox and Bruins players. Consider yourself warned!)

As he shares stories about Aussie hospitality and never having to buy his own beer, you can almost see the conversations and moments recreated in his mind. He speaks so highly of his time, mostly in Sydney with such fondness. It's really kinda sweet because for just a moment, I feel as I've gotten a glimpse into my dad that I never knew. 

For the longest time, I would get super duper annoyed when he would bring up Australia. Without a doubt, I'd roll my eyes and think "Here we go again. This will lead to conversation about Vietnam which will somehow come back around to baseball. Inevitable."

When it somehow came up that I too had been to Australia, he would be so surprised. For just that moment, he appeared to moonlight as a stranger I'd just met, one who didn't know my life history. Not my dad who followed my trip around the world in 2009, including a month in Australia. Sometimes, he would just ask me flat out if I'd ever been.

And I'd smile and say "Yup. I was there in 2009 and loved in." He'd ask me questions about where I'd been, what I thought, if the Aussies were still super nice and friendly (yes, they are also tall, sporty and handsome. So there's that.)

I'd answer his questions, all with an internal eye roll and sigh. Of just being annoyed. 

Why oh why oh why can't he remember this? It's not a minuscule detail of my life to forget. Everyone in my world knows about my adventures and travels. We skyped from Australia. I sent pictures. He read my emails and blog posts.

Yet every time, it's like the first time. All over again.

It's different for me now though. I've decided to join his conversation. It's not his fault he can't remember. Which I know. But there's been a part of me, for 13 years, deep down somewhere, that was still, subconsciously, holding out hope that he'd miraculously remember about my visit to Australia.

Believe it or not, the internal shift I've had is really hard to describe or put my finger on. I just know that now, the frustration that I felt, the anger, the annoyance that would grip me doesn't anymore. (I mean, I'm not super human and no doubt will be annoyed at things in the future.)

But for now, I'm joining him in his conversation vs expecting him to be part of mine. 

"Yes Dad. I have been to Australia and loved it. Can I tell you more about it? I always knew that you loved the Aussies and you're right. They are still super friendly. What was your favorite part about your visit there?"

Love you Pops. xx


He wonders where I live

He wonders where I live

I was just on the phone with my dad, chatting about whatever random question came to his mind.

First he was asking me what I do for relaxation, as in what are my relaxation activities here in Boulder. 

Then he asked me how business was going.

Next up was asking about how I was settling into Boulder (it’s been 15 months)

Then he was asking me how I like where I lived. In fact, he said, you’re in a hotel room right? 

I could hear the hesitation in his voice as he asked me. 

Sometimes i think this is the hardest part for me about having a conversation with him. It’s almost as if, in moments like that, he wants to say something more or knows that what he’s saying isn’t quite right…but he’s just not quite sure of what to say but keeps on asking and talking.

   My parents and I visiting Estes Park, CO in the summer of 2015


My parents and I visiting Estes Park, CO in the summer of 2015

Sometimes, like with the hotel room question, you can hear the uncertainty in his voice, that a part of his brain is going “of course your daughter doesn’t live in a hotel room! You were there 6 months ago! It’s a super cute little one bedroom apartment that you know she loves. In fact, you loved it."

But instead the question comes out, “you live in a hotel room right?"

I tried to explain without saying things like “Dad, you were there. It’s an apartment, remember?"

I just state the facts about how it’s not a hotel room, but my own place. I live alone and really like it. I share about the view and how it’s close to Jim and Julie (my cousins). 

His next question indicates he somewhat gets it, as he asks about my neighbours and that I must know them.

Unfortunately I don’t. Nor do I know them any better each time he asks me that question. 

It’s in those moments when I’m smacked in the face with my dad’s dementia - a loud and clear reminder that my dad’s brain cells are slowly dying off, leaving things to misfire, to not properly connect and ask me questions about living in a hotel room.  

Love you Pops. xx

The one upside of my dad having FTD

The one upside of my dad having FTD

In the past two weeks, I’ve made more connections to people within the dementia community than I have in 13 years. Thank you Twitter and the power of hashtags. I can't believe I'm saying this, but I'm so grateful. 

13 years ago my dad was diagnosed with dementia. Frontaltemporal Lobe Dementia (FTP.) 

Oddly it gave me some kind of relief. I knew something was up. I didn’t know enough to think that it was internal or medical, but I inherently knew something wasn’t right.

   Family gathering in Fall 2014


Family gathering in Fall 2014

He had lost a lot of emotion and didn’t engage in a way that I expected him to. Or really how any “normal” person would, although we all know how relative thatword is.  In moments when I'd share super exciting news with him, all I’d get in return was a blank stare. A comment, a look, a glance totally and completely devoid of emotion. 

As an emotional, expressive person (understatement of the year) this was reallllly,incredibly hard for me. Like, really fucking hard.

It made me mad. It made me want to shake him and yell “didn’t you hear me? I just got a new job". Or "I was called for an interview.” Or "I'm going to Spain!"

Nothing. Nada. Zip. Zilch.

I just did not get why he wasn't excited or happy. No emotion.

Frontaltemporal Lobe Dementia affects the frontal temporal lobe (Ya think?) And this is where your personality and processing functions are housed.

So while my dad might have been excited on the inside (he is a proud papa after all) there was no way I'd know that. 

Without that diagnosis, I was just mad. And annoyed. And inpatient. And pulling back from sharing anything with him. Because, why would I?

With that diagnosis, I slowly got it. It wasn't his fault. He wasn't not excited. It was just that there's a larger force at play. 

I softened towards him. I tried to remember that just because he's not showing emotion doesn't mean he's not experiencing it. Chances are he can't put expressions, words or feelings towards it.

Now when I share news with him, I try and remember that. 

Don't get me wrong. I'm not a saint. I still get annoyed and have to take frequent deep breaths when conversing with my dad, but there's so much more love and compassion there now than there was before. 

When I'm nearby sharing news, I try and deliver it with a touch of my hand to his arm accompanied by a smile. That seems to register more with him. 

Clearly, I wouldn't wish dementia of any sort on my worst enemy, but as someone who tends to be Ms. Positive Patty, this is my positive spin on the situation. 

My dad's diagnosis has helped me heal my relationship with him. To get closer to him. To find even more love and compassion than I ever thought possible.  And oddly to get to know him better as he begins to slip away. 

Love you Pops. xx