What To Expect From Social Distancing

Day 11 in isolation:

Let me tell you folks, as someone that spent relatively five years in isolation, You. Can. Do. This!

Most of you that follow me here already know the story. My parents got sick and I had to abruptly leave my job, my apartment ,my partner, my new car, my everything, to care for not one but two parents with ALZ and dementia. Blah, blah, blah... It was the f’ing worst! It was my whole world and it crashed around me in an instant. Oh, and spoiler alert, everyone died. It was the hardest thing I’ve ever had to do and in the wake of this crisis, you need to know you can do this, and it’s gonna f’ing SUCK!

I’m thinking about reviving this site to share more about the isolation experience as I see so many suffering with the dynamics of all this change. And I wish I could say being away from all your friends and family will be easy, but I can’t. It’s not. It’s the worst f’ing thing I’ve ever experienced and I did it for five F’ING years!!!!

But! And there is a really big BUT here... Isolation teaches you things about yourself that the world itself cannot and I encourage everyone to just take a deep breath and think about your fear. Is it loss of income? Is it loneliness? Is it the loss of your stability or worse… death?

Tell me what it is and maybe I can share what I gained when I faced those things alone. Maybe it will help calm you if you’re feeling scared. I was scared for a good long while and I still am... but perhaps not to the same degree. I’m not the same person I was when this journey first started. The years changed me but I’m better for it and I’m happy to share more of that experience if you think it might be helpful.

Tip #1: Get a hobby!
Stay healthy and stay home! Love to you all!

{Originally posted on Instagram on March 23, 2020.}

5 Tips For Downsizing Seniors

Hey there!

June and I are back with some tips for downsizing seniors.  This is actually much easier said than done and I can say this with certainty as I've now spent the last three years bringing a sense of order to the house I grew-up in. It was never the most organized of homes but as my parents health declined, the house grew further and further from any sense of security.  Their slide into dementia and Alzheimer's was increasingly complicated by the sheer presence of stuff.

Stuff I realize is often a sore subject.  Those that have it, struggle getting rid of it and those that inherit it feel burdened by the responsibility of managing it.  Seniors and youth often find themselves at odds.  Arguments about the value of antiques and heirlooms need to be measured alongside the expense of missed work, cost of storage, and the cost of transportation.  It's not that the youth of today value low quality items made in China or whatever the case may be, but rather the youth of today are in fact working and  providing for their own families and have purchased their own belongings as time and means allowed.  As any generation with the privileged to afford goods, they purchase items that speak to them with regard to their personal taste, budget, and space.  The assumption that items will be passed on and swapped out can belittle the hard work one took to establish their own household and I encourage seniors to pause before assuming younger generations will want their wares.  I would also encourage younger generations to ask questions and learn the history behind family belongings as many items are valuable because of their stories.

Part storage, part childhood... 

Needless to say, "stuff" is a complicated subject for families and June from Rise Up for Caregivers is here with a handful of tips to help give the process of downsizing some momentum. Read hers below and please share any you have discovered.  Decluttering and downsizing can be a massive undertaking so please don't hold back on suggestions!

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For seniors, there are plenty of reasons to need to downsize - you’re moving to a smaller home, moving to an assisted living community, decluttering to make aging in place easier, or simply because you want to get rid of some things and streamline your life. Whatever the reason, it’s never a pleasant task to begin, however, the results are usually rewarding. Here are some tips to make it more manageable.

Put gadgets in boxes

This is a trick to figure out exactly what you use and what you don’t. If you have a month or two to spare (before a move, for instance), pack up like items into boxes. Put all of your kitchen gadgets, electronic gadgets, and other gadget-like items in their own boxes. Now, over the course of the next couple of months, take out the items as you need them. What’s left in the box after a few weeks are items you probably don’t need. Do note, this works best for “useable” items. There are plenty of things that you won’t “use” in the course of a month that you still want to keep like photos, jewelry, and other sentimental items.

Institute a “one in, one out” rule with collections

When it comes to books, DVDs, CDs, and other types of collections, we can amass more than we know what to do with by the time we are seniors. One way to make downsizing these collections easier is to institute a one in, one out rule. For every one you keep, throw one out (or donate it).

Precisely measure your new living space

This tip is crucial if you’re moving to a retirement community, where you’ll have significantly less living and storage space. Have a loved one go to your new space and measure everything - closets included. Make a quick sketch of the floor plan and then get to work planning where everything will go. Once you have a place for everything you truly need in your new retirement community space, it’ll be easier to part with the stuff that simply cannot fit.

Go digital

Downsizing is about getting rid of physical items to unburden yourself and create more space, but that doesn’t mean you have to get rid of memories. Use internet storage to your advantage. If you have a bunch of old photo albums or scrapbooks, think about scanning these images into a computer and uploading them to an online photo storage site (here are some of the best). If you have other keepsakes and mementos, take photos of them and get rid of the physical item. This will allow you to keep the memory, but ditch the bulky items. More on downsizing your photo collections here.

Take “maybe” out of your vocabulary

When deciding what to keep, what to throw away, and what to donate, you should make those decisions as you pack and organize. Ditch the “maybe” pile. If you allow yourself the option of not making a decision on an item, you’re much more likely to keep it later on. If you truly want to downsize, you have to make hard choices as you go.

Downsizing is always going to be stressful. For many, it can be downright emotional. Getting rid of possessions is never going to be easy, but it’s vital if you’re moving to a smaller living space or simply want to declutter your life to give yourself more independence. Start early, give yourself time to organize, make tough decisions as you go, and don’t be afraid to get rid of duplicate items. In the end, you may find that you feel better - or at least less burdened - after you rid yourself of all that physical baggage.

Stuff just hanging out in the dinning room. It wasn't just a matter of what to do with the stuff.  I had to to first assess what the stuff even was!  

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Ok, now its your turn!  Please comment below with thoughts and suggestions or any best practices you have on this topic.  I personally find it overwhelming  and as you can tell from the pictures above I have many thoughts on this subject.  So many in fact I found it hard to capture my thoughts and needed to pull June in to help us get the conversation going. Let's here your suggestions!  I'll add some of my own thoughts in the comments and we'll see where the topic goes.

Daily Needs Assessment: A Key to Quality of Life

Hi folks!

I'm back here with another guest post from June Duncan, the author of the soon to be released book The Complete Guide to Caregiving and creator of Rise Up for Caregivers.  This time around she comes to us with great information relating to senior independence and some tips for assessing when a caregiver may need to step in.  Identifying these things early can help caregivers (or future caregivers) mitigate problems. Forecasting possible scenarios is a step towards putting a plan in place and I speak from experience when I say you don't want to be caught off guard.  Many of these suggestions are short-term solutions that can help pad the timeline surrounding a more significant transition.  It can be overwhelming to tackle all at once but take notice, address what you can, and begin assessing the needs of your senior loves. 

Now, some words from June:

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Image courtesy of Pixabay

Caregiving for a senior loved one can feel like walking around in the dark sometimes.  However, there are key ways to improve your senior’s quality of life and meet needs more clearly.  With a well-defined assessment, you can enhance your loved one’s independence and relieve that stumbling-in-the-dark sensation.

Gauging independence

Certain tasks performed in everyday life are necessary for independent living.  Those tasks are termed Activities of Daily Living (ADLs), and include items such as dressing, bathing, eating, using the toilet, and being able to move from laying down to standing.  Sometimes with a little support in these areas, seniors can continue living at home and remain reasonably independent.  The first step in deciding whether your loved one can safely remain at home is clearly gauging how much assistance is required in performing those tasks.  Carefully assess your senior’s ability in each of the ADLs, using a sliding scale on how much help is needed to accomplish each task.  This may seem a bit overwhelming, but there are a number of tools available for making this evaluation, such as the Bristol Activities of Daily Living Scale. 

Simple alterations

Once you complete an assessment of your senior’s abilities, review your loved one’s living situation.  Oftentimes, the home environment can be effectively improved with minimal effort, allowing greater safety and peace of mind.  Ensure the main living area is entirely on one floor, with access to a bedroom, bathroom, and kitchen.  Then review the living area for enhanced mobility and reduced safety risks. 

For example, the National Institute on Aging recommends reducing slipping and tripping hazards in the home.  You can do this by removing furniture and opening floor space for your loved one.  Reduce clutter such as magazine racks and piles of newspapers, and eliminate or secure throw rugs.  Stairwells should include a sturdy railing for support, and electrical cords should be safely secured away from walkways to reduce the risk of tripping on them.  Ideally, floors should offer improved traction; you can leave surfaces unpolished or install nonskid strips to enhance your senior’s safety.  Some experts also suggest removing thresholds so your senior doesn’t need to navigate steps in and out of the home and between interior rooms.

Improving visibility is another simple but important way to enhance your loved one’s safety and independence.  Even if your senior is still enjoying good physical vision, sometimes comprehending what is being seen is an issue.  There are several simple ways to help.  Stairs can be marked with different colored tape so the changes in levels are more easily seen.  Similarly, use high-contrast colors for floors and walls.  Eliminate window coverings and rugs with complex, confusing patterns. 

For better accessibility in bathrooms and kitchens, consider installing lever-style faucet handles instead of knobs.  Single levers are best, since they are not only easy to grip but also reduce the risk of scalding.  Use base cabinets for the majority of storage so your senior doesn’t need to climb to reach items, and add lazy Susans and pull-out drawers to reduce bending.  Some professionals advise adding grab bars in bathrooms to reduce risk of falls. 

Services and resources

When considering what ways your loved one’s quality of life can improve, explore resources in the local community.  As the experts at HomeAdvisor explain, seniors can often enjoy remaining in their own homes through the benefits of supportive services.  Meal providers can deliver nutritious food and reduce shopping and meal preparation responsibilities.  Transportation services can allow your loved one to run errands and reach medical appointments even if driving isn’t feasible.  Money management professionals help seniors who are no longer able to perform all of their bookkeeping obligations.  For specific services and resources available in your locality, contact your Area Agency on Aging. 

Assessment is key

A good assessment will help you identify your senior’s limitations.  Once you have a clear understanding of where needs are, you can directly address those concerns.  By modifying the living environment and employing supportive services, you can improve quality of life for both you and your aging loved one.

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Alright, now it's your turn.  Do any of you have experience implementing any of these suggestions?  Or, do you have any questions that June or I might be able to address?  We understand that the world of caregiving is increasingly isolated and decision making is often challenging without a sounding board or support system to help provide some perspective.  As always, this space strives to create a community for the unique needs of caregivers so please don't hesitate to tell us your thoughts.  We want to hear from you but we also want to learn from you. Drop us your thoughts and lets get to discussing!

Life Updates- 2017/2018

It's been a while since I've done an update but let it be known that no news is good news!  At the close of 2017, things were moving rather quickly.  Suddenly, life had an uptick. I needed to refocus some priorities and maintain momentum.  And just like that, January was over too.  Again, all good stuff and I hope this tide continues, however caregiving remains the riptide and it dictates everything else. So, here's what's been goin' on...

December 2018

Spoons

Hand carved, wooden spoon...

December was incredible for my spoon venture.  I sold 4 spoons at the end of the year and felt the pressure of filling "orders".  This still blows my mind. I officially opened the shop section of this website only a year ago and it's been so well received.  I can hardly establish an inventory but that's a production problem that fills my heart. 

In addition to selling spoons, I thought I would explore the knife business by selling carving knives to budding carvers.  In theory, this is great but the reality of shipping knives in the mail without proper blade protection is a bit of a liability.  Safety first! I needed to make protective sheaths...  Wha-what? Knife sheaths?!  As you might imagine, I was clueless, especially for this curved blade below.

Curved blade knife used for carving the bowl part of a wooden spoon.

YouTube was full of suggestions for straight blades but the curved blade left me stumped.  Insert Jesse, a good friend and owner of the Jewelry Studio of Wellfleet.  She suggested I take the leather jewelry class offered through the Art School at the Boca Raton Museum of Art. The logic here was that instructor would likely have enough experience in leather working to point me in the right direction. It would be a fun class and get me out of the house.  Sure enough, that's exactly what happened!  

Leather Jewelry Course

Honestly, the class didn't exactly fulfill my sheath dreams but it did solidify fun into my schedule.  I got so much joy from the creative process.  Learning something new scratched my own creative itch.  It helped break-up the caregiving monotony and the perpetual thoughts of feeling stuck.  This leather class reconnected me with my "old" self, the person I was before this whole mess started and reminded me of these wise words by Nayyirah Waheed in her book Salt.

“Where you are, is not who you are.”

— Circumstance

The class reminded me that at heart I'm a maker and my soul is forever analogue.  I fell in love with the process. Leather work aligned with my attraction to raw materials.  Something about it clicked.  Below are a few bracelets that represent the beginning of a brand new hobby:

Adjustable, yellow-dyed leather bracelet with eyelet detail.

Secured, teal-dyed leather bangle with brass and nickle eyelets and riveted closure.

Secured, navy-dyed leather bangle with assorted rivets.  Cause, I love rivets!

January 2018

#koolbob - Health Update

Unfortunately, it's not all fun and games. My dad was in the hospital at the end of the year. We made our way to the ER at 3 AM via ambulance which my hope is for the last time.  The event proved tragic for both of us.  Awaking to his health concerns in the middle of the night, I was forced to recognize the hopelessness of our situation as I too was sick.  Only hours before I was throwing up for some unknown reason.  Food poisoning?  Flu? No idea... But the reality was stark. We were alone.  I was slow to respond and overwhelmed at the crisis.  I called 911 somewhat unsure if he was having a 911 moment.  This is a frequent mental debate I think many caregivers experience.  Is the given episode worth the chaos that follows?  Am I ready to light this match?

True to form, that phone call was the match that started a fire, and swept us straight into all the misgivings of the healthcare system. If it were my own life, then I might be more obliging to the procedural side of things.  The parlay of treatment makes sense in regard to the longevity of health but not when measured alongside that of dementia.  My father (and I suspect many seniors that end up in the ER), became a matter of medical whims.  A test subject for assumptions...  The inability to describe what's wrong often leads to random tests, many of which are safeguards backing medicare compliance and have little to do with physical health and everything to do with who picks up the tab.  The liability on part of the healthcare industry is much too great and therefore procedural tests and treatments, (several of which I now know were absolutely unnecessary) have become the backbone in determining a diagnosis for many elderly.  This medical process of elimination is nothing short of confusing for anyone with some form of dementia and is often physically painful.  The excruciating cries, barely muffled by a curtain, are damages accrued to both the individual and their caretaker.  Where one feels the physically pain, the other is destroyed at heart, and the over all sense of hurt and suffering only gets compounded. It's these visceral cries that continue to haunt me from my mom's sudden passing.  These sounds I can't unhear...  Sounds that have been nothing short of brutalizing and ring all the more loudly when it comes to paying premiums.  Ultimately, my dad's hospital trip proved "minor".  He was discharged later in the day with a diagnosis of mild constipation and some acid reflux.  We were sent home nearly 10 hours later with over the counter prescriptions and I had a new headache in how to unwind the trauma he just incurred. 

What people don't realize is that managing dementia is the art of managing chaos.  Rather than implement chaotic measure at the ER, staff could better their services by foregoing some procedures and listening first to patients between their garbled words and observing their behaviors in their most basic form.  Treating through the distortion is not exactly "treating" a dementia patient and the health profession could learn a lot by just looking and listening.   Doctors will likely refute this statement but that illustrates the refusal to listen.  To truly care for someone with dementia you must first care for their environment.  Actions and procedures need to be assessed with regard to overall comfort because it's what happens later, behind the scenes, that ultimately impact one's quality of life.  

“To truly care for someone with dementia you must first care for their environment.”

When we returned home, my father's anxiety was at an all-time high.  He was restless, experiencing a new pain (urinary, because he was forced to have a catheter rather than water that would help him pee on his own), and agitated in a way that I found abnormal to his norm.  He repeatedly said he was in pain and dying, leaving me again feeling helpless and ultimately hopeless.  Somehow we got through the night and after a follow-up check-in with his primary, it was determined after he left the hospital (where he had an EKG) and prior to this doctor's visit where he had another EKG, he suffered a heart attack.  The worst part is that I think I watched it.  I saw it happening and yet remained inactive both out of fear that another hospital trip might in fact kill him while also taking foolish comfort in the idea that he would never have been discharged if his condition was at all serious.  His condition at the time was not serious but his endured stress from the experience went overlooked.

Long story short, I enrolled him into hospice care shortly there after.  For those of you that feel sorrow towards what you think hospice means, I encourage you to do some research. (You can start right here.)  This is actually one of the best decisions I have made and stand by their approach of patient and family centered comfort-care.  I'm happy to share more about this decision in the comments or through private messaging if you want but for now just know that this is a good thing. I'm hoping the hospice team will enable my dad to live his best version of life for the time that remains. I want to do small things with him when I can and I don't want to live in fear that taking him somewhere might risk his health.  He's almost 86 years old.  The risks are plenty obvious!  But I need to part ways with the burden of caregiver guilt and feel confident there is a team of health professionals that get us. We want to live life, not wait for its passing.  Thus begins our new forward perspective... and below is a little taste of what that looks like.

At the Boca Raton air field for the WWII airplane tour.

Knife Sheath Class

Ok, back to knife sheaths!  At the start of the new year, like a gift from the universe a leather knife sheath class was being offered locally.  (Wwwhhhaaaaattt?!!!!!!!!!!!) Clearly heeding the sign, I enrolled.  It was a five hour workshop and as expected, it was for straight blades. But, beggars can't be choosers!  I took my straight craving knife to the class thinking I needed a sheath that runs parallel to my belt.  Not the perpendicular style where the knife points down.  I wanted it across my lower back all discrete like a bad a**.  Granted, this is a work in progress but you kinda get the idea.  Just imagine this sheath like a rugged tramp stamp.  You with me?!

Straight knife sheath for my Mora carving knife.

Spoon Carving Class

Well, you know how one thing leads to another. It just so turns out that the place that was offering the sheath classe is interested in hosting a spoon carving class! Like a true act of fate, I met the fine folks over at The Guild Folk Art School and in a few short weeks we will be hosting a spoon carving class for the community.  I'll keep you posted on dates when we work that all out but in the mean time, take a look at their offerings.  Everything from blacksmithing to ceramics to knife making (you know that's next;)) and more!  Take a look. 

Darebee Exercise Challenge

Another new year high has been completing this 30 Day HIIT Challenge during the month of January.  There are lots of excuses I could have made to fall short on this goal but when my friend Erika sent it to me post binge eating holidays (which I continue to stand by!), I  realized, I had no excuse.  I could make excuses but none of them truly held weight and rather then complain or pass judgement on why this challenge wouldn't work, I just committed. I suspended judgement and expectations and pursued the challenge of discipline.

I find it easy to fall prey to the inertia of caregiving and neglect things.  What's worse is society almost makes the excuses for me... "Oh, go easy on yourself.  You have a lot on your plate".  That might sound reasonable but deep down I know when I'm being lazy.  So yeah... An experiment in exercise but more, an experiment in follow-through.

About two weeks in I realized the hard part about exercise for me is just knowing what I was going to do on a given day.  Good intentions are nothing without action.  This challenge told me exactly what to do and no equipment was necessary.  Bingo! I have no mental space to create an exercise strategy here.  Just tell me what to do and I'll do it!  So, I also pulled the trigger on this workout book! I figure, 100 workouts to complete over the rest of 2018 shouldn't be so hard.  That's about 9 workouts a month (cause it's February now) which seems more than manageable. And the no equipment necessary/can-do anywhere factor helps eliminate the obvious excuses. 

If you are curious what's inside I put an Amazon link below. It's the same deal at the challenge link above but expanded.  Also, if you have any suggestions for timer apps please send them my way!!!  

100 No-Equipment Workouts Vol. 1: Fitness Routines you can do anywhere, Any Time

By Neila Rey

As for anyone following my pistol squat attempts, just know that they are coming... one day.  Not sure why I thought I'd have those down in a month but reality checks are a good thing!

Alright, that has to be it for now.  I'm impressed if you are still reading this!  I could keep going but my soul is running dry from being on the computer this long.  I told you I was analogue. ;)

TL;DR- Life updates

* This page contains an Amazon affiliate link. If you click on the affiliate link and make a purchase, I will earn a commission at no extra cost to you. This helps maintain the cost of How To Feed A Senior. Thank you for your support.

 

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.
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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!"
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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!

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?

Persimmon Whip Recipe

Tis the season for persimmons, and anyone out there a little suspicious on how to incorporate them into your comfort zone, this recipe is sure to help.  Hachiya persimmons, hailing from Asia but commonly found in the USA are chalk full of vitamin A, vitamin C, potassium and copper.  You might be curious about that copper bit but the good news is copper is a great anti-inflammatory.  Alzheimer's and dementia are associated with inflammation of the brain so any ingredients contributing to a reduction of inflammation is a good thing.  The same goes for anyone trying to manage symptoms of arthritis.  Seek-out foods with anti-inflammatory properties as a natural approach to assist relief.  Every little bit helps, right?

Ingredients

• 1 ripe Hachiya persimmon
• the juice of 1 lemon
• 1 tsp of honey
• 2 tbsp of olive oil

Directions

1. Cut the persimmon removing the stem and seeds
2. Place in a blender along the other three ingredients
3. Puree until smooth and well combined
4. Taste and adjust slightly if necessary

Persimmon whip with plain Greek yogurt on 7 seed crackers.

The great thing about this recipe is its versatility.  It makes a great spread for crackers or sandwiches and it can be thinned with more oil and converted into a salad dressing.  There is a lot of potential with this whip and the season won' last long. Pick up some persimmons while you have the chance!

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!!!  

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! 

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