Survivorship

It's been two years now...

en·dur·ance

inˈd(y)o͝orəns,enˈd(y)o͝orəns/

noun

1. the fact or power of enduring an unpleasant or difficult process or situation without giving way. "she was close to the limit of her endurance" synonyms: toleration, tolerance, sufferance, forbearance, patience, acceptance, resignation, stoicism

adjective

1. denoting or relating to a race or other sporting event that takes place over a long distance or otherwise demands great physical stamina. "the annual 24-hour endurance race"

You Are A Survivor

The bits of you that are broken, the bits of you that are damaged, do not see them that way.

Instead see them as slowly being filled with beautiful experiences and truths you have learned from the damage, the equivalent of lacquered gold.

I want you to remember you are not a broken thing. Instead, you are a human full of incredible and wonderful experience, made of the same things swords and diamonds are made of.

You are a survivor, my darling, and I salute you for everything you have been through, and for making the universe so proud, so very proud of what you have become.

~ Nakita Gill

Everything's Gonna Be Ok

Sometimes there's just no words...  

Let's Build A Dream

Complete this sentence: "When I grow old I...".

It's common to hear "When I grow-up I..." but when was the last time you heard someone talk about their desires for old age. When was the last time you looked far enough into the future so you could see past retirement. I want to know about that version of you. More importantly I want to know more about that version of myself. So, instead of some goals for 2017 I'm setting them for 2047. Let's tack on 30 years and make a daydream for that person. 

When I grow old I'll have long white hair like my mom did. I will live in a rural, small cabin with a small footprint with my love who looks as handsome as the day we met even with the wrinkles. I will be a master gardener and a bee keeper. I will be able to get up off the ground without help and still split my own wood for the oven. The house will smell of fresh bread and the hours will pass with hobbies and craft that reflect a skill that can only be acquired with practice and time. I will have learned patience. I'll be both flexible and strong for my age. I won't be on any medications and I will cook for my friends. I'll take outdoor showers, make up my own sacred rituals, and connect more to the earth than ever before as it will await to receive me in rest.

Cheers!

Recipe For Self-Care

Long story short, I need therapy.  And I need it in any form I can get it.  It could be clinical but right now I would welcome any and all forms. Massage, retail, physical, medicinal, smudge stick? They all could work.  Since my mom's abrupt passing, my life has been spinning so fast that I can't seem to tell up from down or right from wrong.  It's all a jumble of voices telling me all the things I should do.  There is no shortage of advice for the grieving but you know what the grieving should do?  Freaking grieve! Ugh, hilarious!!!  I laugh at my own suggestion because a month consumed in the end-of-life aftermath would prove that only a naive person would think our culture allows room for mourning.  No.  There is no room for that so I warn you not to get your hopes up.  Any space you create for yourself in loss is merely a distraction from our cultural demands of filing paperwork, paying lawyers, fighting probate and navigating the system.

“Job creation is code for bureaucratic paperwork.”

I used to think the system was flawed and we were a family falling through the cracks but that's not the case.   The system is not flawed.  It's fixed and I realize now that I wasn't a pawn being puppeteered by the masters but rather, I was (and remain) a cog, diligently filing the paperwork and stroking the flame of "progress".  At a later date I might go into more detail about these things but in effort to stay on topic I'll quickly say this; job creation is code for bureaucratic paperwork. If you are curious to understand what I mean watch this Ted Talk.  Our situations are different but exactly the same and at this point I struggle with defeat.

See what I mean?  There is a darkness here and I live with it daily.  It's not grief. I wish I had room for grief but I am so consumed with a bitter disgust for the way the world works that I feel I need a complete cleanse of the mind, body, and spirit.  My thoughts are bitter, I feel like crap, and my spirit...  Like I said... Defeat.  To crush the souls of the living I am sure steals magic from the world.  One by one, I can feel the world becoming a dangerous place as those like me take there position alongside the army of the raged.  It's an army of those who feel burned and irrationally waiting to strike, given the opportunity. It's not a good place.  

Therapy.

So, what's the fix? I'm going to try swimming.  For the month of September I am going to practice with the city's master's swim club which is an adult swim program that holds practices daily with a coach. I am hoping I can swim the rage right out of myself and get back to a more forgiving person I am comfortable being.  I am only saying this here for accountability because these days it's hard to hold myself to anything other than pajamas. 

Magic.

I'm also putting faith into all the other magic the world is gonna throw my way. The awesome folks at the Jewelry Studio of Wellfleet sent me an amethyst necklace, symbolic of healing and comfort for the grieving.  What they probably didn't realize was amethyst was my mom's birthstone and purple was her favorite color.  Right now it's so much more than a necklace.  It's a shroud to treat the wounds of a broken heart.  

Magician's hands.

My mom and I, we were just getting started.  Her hands were harbingers with talent and creativity that was unmatched, even against Alzheimer's. For the first time in a long while I felt traction for "promise".  I was embracing the role of caregiver. Re-branding it even... I started to feel the potential and together, I imagined us making great things.  I was just finishing up the foundation when she was stolen from us, a loss that feels like insult to injury.  It's been a raw deal these last few years...  I'm bitter and things are dark but what would you expect after being repeatedly shown that wounds don't heal, they only grow deeper.

Depression is ok to visit but not a good place to live. Thus begins the journey of moving on.  Last night was a new moon which is said to usher in new energy. I'm ready.  I look forward to clarity and hopefully the calm it could bring. I am anxious for some stillness and a twinkle of light...

TLDR: Plan your days by the light of the moon as the sun will never wait for you to catch your breath.

UPDATE 9/21/16: I've been cross posting the details of this journey on Instagram @ashleylook1 under #selfcarerepair.

Just #Koolbob

This is a round-up of some favorite shots of my dad from Instagram.  It's not as easy for me to make updates over here but with it being Father's Day, I figured it was the perfect time to archive some #koolbob moments. 

My dad.

#koolbob. A veteran of the Korean War and now fights the war on dementia. As this Memorial Day passes I find that our family remains in hope that#veteran Affairs will hurry its decision to award him VA Benefits.
*
We submitted an application back in January, and by March finally received notice that they had received it. And now, the last day of May, I find I am still holding my breath! "Hurry!!!! We need you! He needs you!"
*
If a picture speaks a thousand words then there are a thousand more in this photo that are lost behind the glamour of social medial. My dad is freshly shaven and styled to perfection which is honestly a rare treat. He is handsome and forever cool and I think the glimmer of what is left of him shines through right here. But he is suffering daily. He is in anguish of the loss of his mind and his independence. It's a painstaking effort to uphold dignity to the caliber that this #soldier deserves but he deserves it! On this #memorialday I continue to hold my breath, cross my fingers, and pray #veteranaffairs REMEMBERS him!

UPDATE: On this Father's Day, June 19, 2016, we continue to wait...

The Man.

People always commend me for undertaking #caregiving but what they don't realize is for one, they give me too much credit and two, they seem to neglect their own capacity to provide #love.
❤️
#motivation to be a #caregiver wasn't a random calling, hollering at me from a street corner. It was more like a nagging voice reminding me I had the ability to make a difference yet waiting patiently for me to act.
❤️
If you had the capacity to change someone's life for the better, would you do it? Of course you would! Because we are not different you and I. Separated by circumstance maybe, but connected in#humanity and a belief that when the time comes for you to step-up, you will. And you will. It's not a question of if? It's just a matter of when. And when "when" comes, you will be relieved to learn that you didn't make the difference. You are the difference!
❤️
FYI: Friends of #koolbob do not worry. This picture was taken months ago and he has quite recovered;)

The Myth.

Behind every good#caregiver is a pot of #coffee. And in my case, this guy, bringing it to me every single morning while I am laying in bed!

The Legend.

Shave and a haircut, two bits!

That's all for now.  I hope all the dads out there are having a great day!

Mortality, Loss, and Finding Peace

Dealing with the loss of a loved one is emotional torture.  It can be wretched.  Almost violent in its disruption especially when loss comes as a surprise.  Death can be insufferable for those who are left behind and therefore mortality as a topic is generally avoided.  The mere thought of a loved one dying is enough to send the mind to a dark place.  The idea alone causes enough disrupt that it's often saved for private existential moments.   Even then, those thoughts are often stifled  because losses as such produces a hurt that is better to shirk. Such thoughts are depressing at best.

Unfortunately, as a caregiver you are often forced to face mortality head on.  You become keenly aware that time is a gift and death is around the corner.  Alzheimer's is a terminal illness and having two parents with dementia makes it impossible to avoid the gloom and doom that lingers on the horizon.  The worst part is that this disease voices a slow goodbye.  The daily reminder that I am witnessing active death is mentally and emotionally exhausting.  At the same time, it is unavoidable and rather than waste time distracting myself, I have decide to explore mortality and death's inevitability by embracing it as much as possible.  This obviously is not an easy subject to swallow but I have found a few resources that are nothing short of inspirational.

1. What Really Matters At The End Of Life

This Ted Talk video by BJ Miller, a palliative care physician, is a must!  Seriously, make the time to watch it and discuss it with somebody.  It's incredibly thought provoking and provides some relief from the agony that is death and dying.  If you are confused on what is important for yourself or those you are caring for, you can find some comfort here.  He also confirms something I have been thinking a lot lately; that all things can be cured with cookies!

2. Being Mortal: Medicine and What Matters in the End

I read this book by Atul Gawande after several suggestions from friends and I am so glad I did.  The stories compiled in this book shed light on the medical industry and the efforts to prolong life at any cost.  It echos the video above but goes deeper into the perspective that quality of life is equally important if not more important than longevity.  Gawande provides outstanding examples of when to let comfort and dignity triumph over prolonged survival and offers a perspective of hope for many facing impossible decisions.

3. Moving On

If you haven't seen this music video stop what you are doing and watch it right now!  It's so smart and creative and beautifully on topic that I almost cry every time I watch it.  Ainslie Henderson is a genius!

 Everyday is a struggle but discovering resources like the ones above are proving to be a source of comfort during, what you can imagine, is a most uncomfortable time.  I believe that anguish in loss is meant to be therapeutic and that heaving cries are part of tragedy's cleanse.  That being said, it's hard to hold on to pain's authenticity when it's the daily norm but to strip ourselves from tragedy's sorrow seems like cheating the soul.  I don't want to distance myself from the pain of this loss as it diminishes the legacy of my parents memory.  Instead I am moving-in closer, finding comfort in an uncomfortable topic, and seeking out new feelings for what end of life means and the emotional grip it holds on my heart. 

Life Auto Corrects...

I have officially been here for one year now.  Wha-what?!  How has it been that long and also a lifetime at the same time?  I can't say that I feel like I have adjusted but at the same time, I have fallen into a routine which is quite telling that I've settled in. Looking back at all that's happened, I realize a single year can act as an eternity and for good reason.  Some things just take time. 

The hardest thing about moving here to care for my parents with Alzheimer's and dementia was the decision to actually do so.  Knowing the vision I had for my future would likely never reach reality was hard to swallow.  Like, chokingly hard to swallow.  I used to have nightmares where I would literally wake-up gagging.  (You can read about that here.) I developed something called Plum Pit Syndrome, a psychosomatic stress disorder that lived in my throat and caused strange episodes of laryngitis that would last for weeks on end.  I also lost about 20 pounds.  These things helped clue me into the fact that it was "time" but really it came down to a single photograph taken by my friend Julie.

How cute is Murphy?!

I spent quite a few nights at Julie's house to avoid the long drive home from Bourne to Wellfleet after teaching Grain & Grain, my bread and spoon carving class.  Those nights typically included wine, tears, and a strategic plan for a new vision of my future.  I absolutely dreaded what I imagined laid before me and desperately longed for a version I could like.  I was overwhelmed by my pending future and it contained nothing but darkness.  The strange thing though was the blindness to my then current reality.  This picture (Not the best. Good job Julie!), complete with striped sweater and bulky blanket with medium sized dog was a sudden wake-up call.  All things which should have added size, somehow made me feel small.  And not just small but frail.  I was losing myself to a battle in which the war had yet to start!

This photo helped me realize my parents weren't the only ones who were sick.  The anxiety surrounding the decision to move, which had been on my mind for roughly two years at this point, was literally impacting my health and deteriorating my quality of life.  Fortunately (or unfortunately) the decision was made for me with a call from Adult Protective Services that came shortly after it was taken.  You can read about how that went down here but I can't help but wonder what would have happened if that call never came.  Would I still be clinging to old dreams, wasting time with procrastination?  Would my parents' health have reached a devastating critical mass?  Would my own health be an issue obstructing my desires of any kind?  I don't know...  But what I do know is that the nightmares have subsided, the plum pit has gone away and my weight has plateaued which is telling that life has normalized. 

The fragility I owned a year ago has given way to a stronger person with clear values if nothing else. There is no room for the weak and I mean that literally.  Lifting my mom off the ground after a fainting spell is no easy task and all 130 pounds of her lifts like the weight of the world.  The weight of my conscience is also gaining strength as this experience has shown me the atrocities of bureaucratic culture and a general lack of dignity for the elderly.  However, I can also say, I have never been more aware of the beautiful resilience of the human condition and the profound reach of the human spirit.  These things were never part of the visions crafted on Julie's couch because these were part of the unimaginable. I never would have guessed...

As for my future, the vision remains blurry and pixilated but with pops of color and structure of something still coming into focus.  After months, even years of living with the hovering darkness of responsibility, I am finally putting some trust in the idea that things are going to be ok.  I am once again, dreaming of a future that is my own and it's a version that I like!  As my wise friend Angela often preaches, "life auto corrects" and we all will be rerouted in the right direction with time.

On Making Things, Especially Excuses...

I have taken a real interest in my mom's ability to create things.  In her heyday she was a florist and often won awards for design.  These days however she needs assistance with everything.  She can't fix her own meals, she struggles dressing herself...  Routine activities are requiring increasingly more supervision, yet somehow she is able to maintain a creative edge.

A girl and her craft.

I am starting to understand her dementia.  She has "moderate to advanced" Alzheimer's and her condition is stealing her logic, but not when it comes to art.  With art, or anything creative, you have to wonder if the impulse contains logic in the first place.  While she can't make decisions and process right or wrong, she still understands color and balance with a beauty that makes sense.  When I am making something I still ask for her input. She can't articulate what something needs or what I need to do in effort to adjust things to the eye but she can still contribute an opinion if I ask questions the right way.  "Should I add this or that? Use a color or stay neutral? Put the detail here or here?" The big picture overwhelms her but when presented with something specific, she knows... 

The Lioness

Her hands manipulate materials and continue to produce exceptional works of beauty so long as I provide them the opportunity. I literally enable the flow of her creativity which is profound at times, especially when I think of the things holding back my own.  Alzheimer's holds her back but what's my excuse?  I wish I could tell you something other than an endless chain of excuses.  Nothing clinical but still, excuses upon excuses and they keep me from the creations that exist in my mind.

So today I have some questions for you.  Who would you be if you stopped getting in your own way?  What would you make or do?  Who or what would you become and what is it that's stopping you?  If we all have the capacity to create, why don't we?  I wonder if your excuses are the same as mine...

Sundowning & Cinching

My latest hang-up is with Sundown Syndrome.  Sundowning is the term or condition used to describe late day confusion, agitation, and restlessness typically associated with seniors with some form of dementia.   As nightfall approaches the mood in the house changes.  It's my least favorite time of day, where the energy seems to creep with a menacing edge.  My mom gets restless and antsy.  She routinely packs her things and gets temperamental about going "home".  My dad's version is different.  He gets frustrated by everything, curses frequently, and is generally ornery.  All it takes is one false move and the whole house topples into arguing about things that don't make any sense because, well, dementia and Alzheimer's don't make sense.

If you look hard enough, you can find an explanation for everything.  The idea that a concept doesn't make sense is not something culturally we know how to embrace.  Instead we often pick it apart so that we can digest "why".  But why is that? Why can't unexplainable phenomenons exist to defy the comforts of closure and instead lend themselves to the lesson that we don't have to know everything.  We don't need to define our existence with scientific explanations, standardized testing, and the evaluation of quantified data merely to plot a point somewhere on a spectrum.  As much as the identifying knowledge can provide a basis for moving forward, it seems to equally result in a platform to unfairly categorize, label, and make projections on just about any dichotomy. Specifically, normal verse not.

  Is the classic example of Sundowning that much different from what a tired baby experiences around bedtime?  Or the toddler who wants to stay up later and fights you on it even though you yourself know exhaustion is near? Fast forward a few years and think about the frustration, exhaustion, or maybe even the depression you might feel when a day escapes you and you have nothing to show for it.  

I often experience this pensive energy within myself.  It's a general dissatisfaction for things as the day comes to a close where for whatever reason I am moody.  Nothing seems right, no person can fix it, and the upside is the sole fact that sleep will come soon and I can wash myself of this feeling and start fresh again tomorrow.  But then tomorrow comes...  It's all rosy and promising till about noon and suddenly the race is on to accomplish something, anything, so that I might release the burden of my own feelings of life being so lack luster.  This is an absolute case of the blahs.  A shrink would likely label this as depression perhaps with an expensive RX to go with it but what the shrinks don't know is the definition of "cinched".  How do I explain what cinched is when the word itself is not text book material and just some street slang colloquialized by my old roommate?  I am not depressed.  I am just cinched, and the recipe for curing cinching is productivity, accomplishment or exercise as a last-ditch effort to feel different. Now, I am not saying that depression isn't a thing.  It most certainly is and "cinched" falls somewhere on the depression spectrum regardless of the word's actual formality.

My point is we probably all suffer from "sundowning" as the hard wiring of our neurology adjust to the earthly biorhythms that can disrupt circadian rhythm. A day turns to night, summer gives way to winter, and the ocean ebbs and flows.  Our internal clocks must adjust to effectively adapt and at times it's not so easy.  What's to say that sundowning is nothing short of normal considering a senior's loss in mobility and capacity to act on intention.  Seriously, where would we be and what would we talk about without the concept of goals?  As caregivers maybe our job is to provide more stimulus, more activity and help create a sense of accomplishment for the "given" so that they might sink into a rewarding night's sleep and remember that there is no place else they would rather be.

A Rhyme Within Reason

Is it just me, or are we all searching for something?  And by something I mean it in that grander, life's purpose kind-of way that has us all itching for a magic key that unlocks contentment. Contentment, different from "settled" yet settled in a way that allows the passing of each day feel gratifying, accomplished and with the favor of satisfaction that feels like we have earned it.  This is an annoying and haunting itch that scratches away reason and leaves a paranoid residue that times-a-wastin'.

I feel like I have spent so much time chasing down dreams, anxious to get on to the next thing only to wind-up lost and confused as I circle back to some original thought that I have long but abandoned.  And now, as I transition into this role of "caretaker" this cyclical pattern repeats, again, only this time distraction waits at a distance.  Without the flurry of my life's former routine I am forced to address circumstance while equally measuring possibility against the culmination of my experiences, skills, and abilities.  

I know I am smart.  This confusion isn't a matter of insecurities.  I have an undergraduate degree in Human Development and Learning from East Tennessee State University.  I have a master's degree in Central and Eastern European Studies from the prestigious Jagiellonian University in Krakow, Poland with a concentration in social transformation.  I am a Certified Natural Chef thanks to the Nutrition Therapy Institute and upon graduation landed an amazing gig with the Sea Education Association.  There has been no shortage of education or adventure, so like I said, my floundering is not a matter of insecurities. 

All of these things stack nicely in the job department but when you are a caregiver it doesn't matter much.  That dream job within grasp is an illusion because obligations on the home-front come first.  Try explaining that to your would-be employer.  Can you tell I have entered a deep pondering phase?   And it's one thing to ponder the future but it's quite another to give up on those dreams (aka: Grain & Grain) when the reality of this life and this moment, is the cage I must learn to live in.  There is no fun in dreaming dreams that hold no possibility and this is one of the biggest crimes against caring for someone with Alzheimer's and Dementia.  

As a caregiver, it's dangerous to believe in your own ideas because fantasies can break you.  I don't want to see the marketing materials full of smiling faces at assisted living centers or rehab hospitals or any other misguided sales pitch.  I want reality!  I want to see the real life of this disease like the moments captured by Upside Down Daughter.  Show me how bad it can get so I can understand my own capacity and develop a measure for when I need help.  I need to establish my own foundation and understand where it is weak.

The future is bleak for so many reasons but maybe those are projections too?  Maybe the face of pain is actually one of strength and all that work you managed prior to this moment is the foundation for a better you?  A foundation for a future that you are still building and doesn't need to make sense now because it's just the ground layer but its the work necessary to stabilize your future.  If I circle back to 17 years ago that Human Development and Learning degree really laid some ground work.  What at the time seemed the fastest exit strategy from college is now a tool for understanding aging, an interest I guess I have had all along.  That chef certification is used constantly and when combined with the human development knowledge I realize, maybe there is a place for me to help explain diet and age related illnesses.  Maybe social transformation exists within social media and these things are all working together to create my purpose?  Maybe Grain & Grain, my budding business idea of artisan bread baking and wooden spoon carving isn't a dream to abandon, but a passion to explore within the context of my current circumstance? 

What if we don't need to have everything all figured out? What if the quest for purpose isn't something you happen upon, but instead becomes you?  Like with carving spoons, life experience is a tool in the making, taking shape little by little until you have a handle on things and destiny is the dessert, a dessert you created yourself and is sweeter than ever.  Is this self care?  I don't know. I certainly don't have things figured out but as I listen in the stillness and try and calm the restlessness I have moments where I can reflect on my trajectory and I start to wonder if maybe, just maybe...I have arrived?

Eating Guidelines for Seniors

A while back I wrote several  mini articles on considerations to keep in mind when providing meals for seniors.  The series was titled "Rules For How To Feed A Senior" and identified four areas of concern that caregivers should be mindful of when assembling meals for the elderly. Those individual articles are still available on this site however I thought I would kick-off the New Year with a summary of those details in a single article for easy reference.  An easy trick for remembering these guidelines is the acronym "HATS".  

HATS stands for:

1. Hydration- Dehydration causes all sorts of issues from blood pressure complications, UTI's, falling, etc. Keeping seniors hydrated should be a top priority!
2. Appearance- As the expression goes "you eat with your eyes" so why not go the extra mile and make your gesture count. Presentation can go a long way when it comes to lifting spirits.
3. Texture- Diffuculty swallowing and poor teeth are common concerns for seniors. Keep this in mind when preparing meals. Tough, crunchy and chewy foods can be problematic.
4. Size- Seniors likely don't eat as much as they used to however balanced nutrition is still critical for optimal health. As portion sizes become smaller, caregivers should strive to uphold a well-rounded diet for those they are caring for.

Hopefully this posts is helpful for those of you managing a senior kitchen.  I look forward to sharing many new culinary crafts with you in 2016 and I would love to hear about things you are cookin' up!  Have a Happy New Year!

On Finding The Right Caregiver

Finding the right caregiver is no easy task.  If you land in the desperate position of needing someone ASAP, then take comfort in knowing that agencies exist with a hiring process so you can have supervision on the quick.  Trained personnel, armed with a client history and years of experience that enable you, the concerned one, to relax, well-assured of your loved one's safety.  That is of course until the possible realization that your newly hired help isn't exactly "helping".  Sure, your new assistant might contribute with drives to appointments, errands or even provide hygiene services but if it's not the right fit, then it is not the right fit. 

I went through an agency and two different caretakers before I realized what exactly I needed from an aid.  Things that sounded great on paper like registered, certified, or experienced didn't exactly translate into quality care.  My first two aids came with thick accents, iPhones and the expanse of knowledge one can only feel confident with when you are in your 20's.  The reputable labor and high price tag landed me with youthful strangers my parents could neither understand nor relate to, both engaging more with Facebook than my folks while I was out.  Sure, they assisted with those minor tasks and of course were able to address immediate safety concerns but at the end of the day I was looking for more. I craved a scenario that made my parents more comfortable at home and as comfortable as possible with their own evolving chaos with Alzheimer's and Dementia.

 Essentially, I was looking for someone who was a "substitute" me.  I had none of the above agency criteria that's supposed to make you feel better about hiring a stranger.  I am not registered with any such agency.  The only certificate I have exists by birth with absolutely zero relevance to my ability to perform specialized duties.  And as for experience?  Ugh... I guess you could say I have little to none?  However, for all intents and purposes, I am the best fit for this job.  I am the Primary Caretaker, Power of Attorney, Health Care Proxy, Estate Executor and perhaps most comfortably or awkwardly, I am their daughter.  Unfortunately, my extensive awesomeness is not enough and I needed to hire someone with the skills, compassion and integrity that were as close a match to my own while simultaneously finding someone with the strengths where I was weak.  I needed someone to engage with my parent, to help them with their struggles and act more like their companion than a complacent house-sitters.

Luckily, I eventually found this magical person and it was a hunt that lasted more than a year.  She is not from an agency but instead, she is from a place called Word of Mouth.  She engages my parents with art, puzzles and conversations that run in circles making absolutely no sense yet engages with a level of patience and kindness that far exceeds my own. She does incredible things like fancy up-dos with my mom's hair, helps her shower or get dressed and brushes and flosses her teeth!  I am not kidding about the flossing.  She takes great care in all 19 of them!!!

I can only pay her $15 an hour which is the standard rate in the caregiving field but I assure you she is worth every penny and so much more!  She is actually so good that I feel a twinge of shame that I can't do more for her because she is doing so much for me.  It is the shame that tells me I have found the right person, when every payday I hand over a check and it's a check that feels so meager in regard to her worth.  I often worry about the financial constraints of this disease and question our ability to afford and sustain quality care.  I actually question all kinds of things related to navigating this stuff and have no idea if I am making the right decisions or not.  I second guess myself constantly but not when it comes to Diane.  She is the right fit and I know this not only from my feelings surrounding pay concerns but more importantly the room she has created within our home to let in joy.

Thank you Diane! Thank you, thank you, thank you!!!  

Rules for "how to feed a senior..."

Rule #4: Make It Count

Late in life, after years of hard work, the least we can do is help our seniors feel like their time has been worth it.  There is no reason to reserve that fine china for some special occasion because this is the occasion!  If these days are final hours, then let's make it the grand finale! 

The day will come when I might also be too feeble to prepare my own meals, pick-out my own clothes or retain any capacity to make my own choices.   Relying on the hand of another can easily strip one’s identity as decisions are no longer of personal preference but rather the selections made by a caregiver. If and when that day comes I hope those giving hands carry tact and grace, with a healthy serving of flair and dignity so that I might enjoy the finality that lay before me.  We all need a little something to look forward to and ideally it will be sweet right up to the end!

Rules for "how to feed a senior..."

Rule #3: Size Matters

As senior mobility decreases and daily activities become limited, it is not surprising that appetites wane as the body has a reduced demand for calories.  Throw in the facts that appetites are often suppressed due to side effects of prescription drugs , anxiety around dysphagia (difficulty swallowing), weakening teeth and changing taste-buds, and it is no wonder that eating is no longer a thrill like days past.  However, it is still important that seniors consume enough calories to sustain their days, and more importantly, get the essential nutrients that allow their bodies' to thrive regardless of age.

Portion control plays an important role when you are assembling the senior plate.  Even though quantity has decreased, the nutrient density and diversity is as important as ever.  Protein, carbohydrates and fat all need to find there way on to the plate and ideally in each bite.  Sure, an older person might feel full after some mashed potatoes and therefore as a caregiver, it is easy to think you have done your job but if you are not providing meals that are a well-rounded composite of macronutrients then your are not enabling their body to preform at its optimal level of health.  Shoot for quality while aiming for comprehensive meals and forgo some of those concerns around how much they are eating. It's not the volume of food that is going to contribute to their well-being, but rather, the nutrient load they will receive with each bite. 

In case you are curious about what foods have the highest nutrient density you can check the the Aggregate Nutrient Density Index here which is a bit like like a report card for evaluating the micronutrients in fruits, vegetables, nuts, seeds, legumes, etc.  It's not a complete list but it's a start and a great place for developing the foundation of how to build the senior plate. 

Recurring Dream

This keeps happening.  Choking dreams... 

The peril for choking is always different and has evolved slightly over time however panic remains. The first ones I remember included sand.  Like being buried alive and relying on the air between those individual grains, always struggling to breath-in. Every breath was sharp and rough as the soft tissue of my lungs gathered harrowing abrasions.   But breathing… very heavy breathing.

Somewhere along the way this dream has changed.  I haven’t had the sand one in a while and the panic is no more about the strain of inhalation, but instead it’s coughing a substance out.  Lately, this substance takes the form of a melted, sticky kind-of tar. Often it is black and coats my tongue and throat, and my breath becomes forceful and heaving as I try to get it out.  It's that same lurching way that happens when you gag.  At times I wake-up, ripped from the dead of night.  The coughing is ragged and painful, but I have to get it out.  If I am lucky I might even vomit, because with that goes the adrenaline and after I can usually fall back asleep. 

Rules for "how to feed a senior"...

Rule #2: Hydrate!

Dehydration in seniors is a major concern.  It pretty much leads to problems you can imagine like dizziness and weakness but then there are a ton of others that you would never realize are connected. What really scares me is a Urinary Tract Infection.  Have you seen the movie Crash?  Do you remember how you hated Matt Dillon’s character as that horrible cop until they gave you a glimpse of his home life and saw the struggles he was up against with his father’s UTI?  So much perspective and all of it sad, sad, sad… 

The issues around incontinence are hard enough to deal with but dealing with a senior UTI freaks me out!  I can’t imagine it; I don’t want to imagine it and therefore we have all become a bunch of drinkers.  My mom is way into Diet Coke which I absolutely detest and can’t help but wonder if all that aspartame is somehow connected to her Alzheimer’s now.  Science maybe hasn’t said so, but it’s completely artificial and I don’t trust it.  Unfortunately, she is not all that impressed with water so it’s helpful to jazz it up a bit.  Garnishings can do wonders!  I doctor up a pitcher of water with whatever fruit I have on hand until it looks like party and then, wouldn’t you know it, everybody wants some.

Cheers!

Rules for "how to feed a senior"...

As I temporarily leave my parents in the care of other “givers” I have been answering a lot of questions around what they like to eat.  I realize a website titled “How To Feed A Senior” should probably clarify some of the rules around the “how-to” part.  In my experience I have come to learn that it doesn’t matter what you serve.  If it is difficult to chew, hard to swallow, or complicated to eat, it’s not going to work.  Issues around poor teeth, difficulty swallowing, and decreased motor skills all increase concerns around senior nutrition and complicate matters for caregivers. The next several posts will be dedicated to a few of the rules I have come to live by and will hopefully help others whom find themselves in the same position.

Rule # 1: Texture Matters

• Keep it soft- At this age the teeth are often in rough shape.  Many folks wear dentures or have teeth that have experienced neglect leaving the mouth sensitive and chewing stressful.  Chomping down on anything can be challenging and things like tough meats, corn on the cob, whole apples, large sandwiches, etc…  These things all put a high demand on the teeth.  Biting and chewing I have noticed are becoming increasingly more difficult.  It’s not to say that my dad doesn’t want a kobe steak, it just means I have to cut it up into small bites that aren’t going to overwhelm him when he has it in his mouth.

• Moist- I know people hate this word but too bad.  Moist is a must! As Alzheimer’s progresses, difficulty swallowing also known as dysphagia, can be a common problem.  This can easily lead to malnutrition and dehydration as those struggling with the condition avoid eating and drinking as the act of doing so physically becomes more difficult.  If you are having difficulty swallowing do you think a dry cracker or dinner roll is going to help?  No.  So, dry is out and moist is in!

Sundays...

Perhaps the Morrissey song is better titled because everyday really is like Sunday, but Willie does a better job defining the mood.  The mornings here are almost always good.  If there is ever an opposite of Sundowners then it should aptly be named Moon Stars Syndrome and refer to the casual awakening of possibility in a day. Spirits are always high, the coffee is always hot, and a runny yolk is almost always around the corner.

Caregiving gets a bad rap.  People don't realize the best parts of the weekend can be experienced every day.  Lazy mornings on the couch or awake but still in bed are comfortable routines anyone can get used to.  Time is for the taking and my thoughts are filled with what to make of what remains, a luxury my old life rarely afforded.  Obviously, all this idleness means it’s time to create this guy a garden! 

Golden Years

As modern media seems transfixed by capitalizing off youth, I have to wonder if I am considered past prime.  I am not even 40, yet the stereotypes that surround “mid-life” remind me I should prepare for an impending crisis.

 At some point, we as a culture have adopted the mentality that life should be figured-out about half way through, and any short comings of that projection are often internalized as failures.  But why are we so quick to adopt failure when the game itself isn’t over?  Half-way is really only part-way, with a substantial chunk still left.  What if the second half is the best half?

The modern portrayal of the “golden years” seems incredibly tarnished.  Seniors have been marginalized by fears of fixed-incomes, arthritis, and blood-pressure medication all indicating to a decline of old-aged comfort. The marketing tactics for seniors even perpetuate these fears dedicating advertising to pharmaceuticals, security systems, supplemental insurance plans and that b*tch who has “fallen and can’t get up!”   

Grey hair, wrinkles and everything else, can’t we find these things to be beautiful?  Isn’t there a place in our cultural mentality for sweetness where golden is really gold and not just a disguise for old?  I refuse to believe that old age can’t be something to look forward too.  One’s best years always need to remain on the horizon and serve as both a destination and a reminder that good things are still to come.  The saying suggests that “Life is sweet”, not youth, no matter how much the media tries to sell us this message.

So, if you care to share, please tell me what your finish line looks like?  Is it a vision of pill boxes and Depends because that is certainly not mine, no matter how mainstream that marketing gets.  Pills and adult diapers may very well be a necessity in my future, but they aren’t exactly the material of dreams.  Not at all! I want the fine china, and I want it every day!  I want hobbies and an early afternoon cocktail on a porch swing with a book.  I want to be able to get-up off the floor without help at any age and go to exercise classes even if they occur on a chair.  I look forward to the discounts because who wants to pay full price for [insert anything here].  And my early-bird special includes sushi not a Salisbury steak?  No, wait.  What is Salisbury steak?  Am I missing something here?  Should I want to want Salisbury steak? 

My point is the golden years should be the best of years and we as individuals and caregivers should strive to make that version of life possible.  Maybe it’s only a fantasy but at least it’s one to look forward to!

Patterns/Repetition

At times I wonder whose brain is really the one in question.  Is it my parents’ with this diagnosis, or my own going nonstop, constantly seeking a way out?  With Alzheimer’s it’s all about amyloid this and tau that, proteins in the brain causing communication disruptions.  Sure, science is leading that charge, but who is navigating the field for the home front? 

The day in and day out of my routine here makes me question what misfires are happening in my own head, yielding a more personal version of “cognitively challenged”. Follow my mom or dad around for a day and you will quickly realize something is off.  But following me around following them and the story gets more interesting. 

Apparently, I too am someone that cannot grasp “learning” as I am the one repeatedly irritated that the refrigerator door is left open.  Again!  This repetition angers me.  I am frustrated with the patterns that they are somehow bound to repeat and for whatever reason, I struggle in learning how to accept this. Struggle with remembering that this is their illness.  Each and every time I scold in hast, reprimanding actions, that I should know by know they cannot help.  Where is my own logic?  What has become of my own common sense?  Why is it that I am also bound to repeat these patterns?

 “Insanity: Doing the same thing over and over again and expecting different results” – Albert Einstein