On losing your mind

So.
There you are tooling along one day and bam! everything changes.
You find yourself in uncharted waters, unfamiliar terrain. You feel ill equipped and suddenly isolated. All you have at your disposal is the contents of your home and an escape hatch that you may or may not be able to open.

What happened? Grandma moved in because she has dementia. Husband had a big health event. Maybe one of your kids needed emergency surgery after an accident or illness. Or perhaps it was the dreaded cancer beast. And maybe it was someone just outside your inner circle…someone you see everyday at work; someone you have come to know and feel strangely affected by their absence and certainly powerless against the circumstances.

Whatever it was. How do you keep from losing your mind? It’s bad enough things are harder. Likely, more responsibilities are falling your way. Some of them can be put on the back burner and some of them can wait behind that list of projects you had anyway. So, what’s one more? And what’s one more season?
No one gets through these things while maintaining life as they knew it. That would mean you are so detached that you were spending all your energy staying in your comfort zone. (Which is a real feeling, but maybe not a healthy choice).

A person can only read so many books and join so many online social groups. The logical human side will assume autopilot. You will exercise less. You won’t get 8 hours of undisturbed slumber. If your charge is housebound, you will find you do less of the things you did before that make you presentable to the outside world. Your memory will slip. You might be angry at others. You could even push people away. Isolation is a step that jumps around in between the stages of grief. You remember: shock, denial, anger, bargaining, depression, acceptance. Just shove a good dose of isolation in between. The difficult part is stepping through these stages sometimes on a daily basis – you have to come back to acceptance before you can start a new day. Every day, if necessary.

I don’t suppose there is a method for not losing your mind. When the body is weary, the mind is the next thing to go. The repetition of daily tasks is a good thing, in this case. Brush teeth, gather laundry, pour coffee, check mail, feed squirrels, gather trash, dispense meds and snacks. Boring, yes, but it’s part of the effort to keep the mind going. Meditation (or prayer), even though I will agree it takes some practice to get the hang of, really does work. It helps to quiet the mind and if all it does is drown out the irrational voices we hear…..then it’s worth it. I meditate for no more than a minute, otherwise I fall asleep. Exercise is critical. Caregiving and health crisis recovery takes it’s toil on the body….the joints get stiff from tension. Whatever moving you can do, do it. Self care is vital to your brain’s sense that it is welcome to inhabit your body – be pleasing to yourself, in the smallest ways and grant yourself some happiness in really tiny packages (chocolate? essential oil? music? Stay in touch with the things that bring you happiness. You may not be going to concerts or out for dinners. You might not even have purchased new clothes in a while. Just keep your wits about those things and be sure you have someone to share how things are going. Label your fears, they don’t always stick. Anything is possible.  They may not be able to do anything about it, but they will keep you from losing your mind. The hope is to keep forward movement, no matter how slight.  Keep your mind in reality and not give in to what you are afraid of or the disappointment that things have detoured.

Run through those stages and remember where isolation hides.

Every day, if necessary.

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Meeting Noah

When Kim was diagnosed with cancer, some things changed.

A lot of things changed.

I had to make a decision to move from the very nice house with a pool we were renting after a foreclosure to something that took less of our greatly reduced salary.  Suddenly less income meant frugal living, smaller spaces (I opted for an apartment, both for less upkeep and a feeling of temporary.  I really wanted to go into this cancer gig with the sense that it was temporary.  Yes, our lives would be different and our perspective would certainly shift, but the feeling that this living arrangement was short term somehow made me comfortable in the journey).

So, I moved us to a bottom floor apartment.  Lots of buildings, plenty of people filling parking spaces.  People who come and go from their jobs in uniforms and work trucks, carrying lunch bags and coolers.  People who walk their dogs to the small patches of green turf.  People who deposit their household refuse into common dumpsters without a hello.  I quickly realized throwing out your trash is perhaps shameful.  It’s not time for conversation.

in the 2 years we lived there, we knew 3 by name.  Donna across the walk works at Safeway.  I don’t know her husband’s name.  I do know he doesn’t like dogs.  He told me that day 1.   Hanna lives in the next building, she drives a bronze Camry and speaks with a beautiful German accent. She’s kind, sells a face product and was always willing to stand and share a nice conversation if we happened to be coming and going at the same time.

We came to know the guy upstairs, to the left.  He bowls on Wednesday evening.  In fact, he leaves at precisely 6:30 pm.  We knew because he let his ball bag bounce down every step.  All 14 steps.  The sound was startling at first.  It became funny later.  I won’t ever forget it.  (He bounced his ball back up stairs on his return at 9:30, btw.)  His lady was very kind, she always had a very warm and nuturing “good morning” for Addie getting on the bus.  I think she is likely 15 years older than me.  I often thought I wouldn’t mind having her presence when I am the same age.  She seemed free without being aloof, a polished hippie.

And Noah.

It’s such a good feeling to see someone across the parking lot that is really happy to spot you, too.  Doesn’t matter where you were going, you divert your path and come together, carrying your bags.  A warm hello and best wishes for the day.  I will miss that interaction.  It wasn’t until we were moving away again that I realized what those meetings in the parking lot meant.  True friendship has to be built, sometimes, it’s a bit magical.  Sharing path with others is an experience that offers more than a feel good for the few minutes.  It leaves with you and becomes you.  We are all better community members this way.

Noah.

While it was only 2 years, I think I did see Noah’s nose turn a little grayer. He certainly was struggling to walk while wagging his back end.   Noah’s guy, tells me today that Friday Noah left  earth.  I’m sad for him.  I’m also very grateful for those times we could say hello, dog to me and me to dog and his guy.

 

 

 

 

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My Worlds Collided and This Fell Out

A couple of weeks ago, we were visited by out of town friends and went to The Joy Bus Cafe for a late breakfast.  (I had the Eggs Benedict…..hands down, the best, because who makes hollandaise at home?)  Seating is a challenge if you are a party of more than 4, so we are often seating Addie on the corner of a table anyway.  She’s not much of a talker (read: nonverbal) and needs help eating (read: maximum assistance for feeding).  A hug from Jennifer is always a good thing and it had been a while since we were out in the community doing something normal.

Someone sat across the narrow aisle and Addie couldn’t keep her eyes to herself.  She can be really nosey if she’s interested in boys between the ages of 15 and 26 or the food ordered at the next table.  The very nice lady at that table just happened to work with special needs kids at a local HS and coincidentally, in augmentative communication.  So, she was aware and engaging.  We had hellos and ohthatsnice and it turns out that while this lady was very nice and quite talented, I’m sure, she was curious how it was that Addie has such nice teeth (of all things…..yes, Virginia, people notice teeth).  With a disclaimer, she wanted to know how that was.  Addie has always been agreeable to having her teeth brushed.  Yes, it’s work.  Yes, most parents are done micromanaging teeth by the time their child is 16. No, we aren’t spectacular or amazing.  Could I offer a parent’s perspective?  I asked.  I had to.  I also had to speak over the roar of this busy cafe and impart a point of view on a (maybe) sensitive issue.  Teeth can be generally issue-y for most people.  Perfect teeth in this society is a thing.  Passable teeth in special needs kids will make or break interaction with peers and guarantee participation with adults they work with.  With that thought in mind, I offered.  She was considering a job change to some other environment, because she thought parents were neglectful in cases where these teenaged kids teeth were on the judging block.

Then the collision happened.

“You likely can’t imagine what it is like to brush a nonverbal child’s teeth.  Everyday for decades.  Sometimes…..there are other things going on.  Special needs parents seem to attract more than one big life hurdle.  So, there will be divorce and cancer (collision #1)….we all have a list of unimaginable, unfortunate happenings that end up reflected in bad teeth, you see. When there’s a medical thing , everything else is in danger of toppling.  Relationships fail.  Hospitalizations.  Overwhelming bills. Job loss (no one takes care of sick disabled children…the parents have to figure that one out) …..housing loss. The isolation is real and can happen in a blink.  Please don’t lay judgement of these kids based on what you think you see.  And if it really bothers you, start a dental care program at your school.  When things go wrong – and they do – the first thing to go is that extra grooming.”

Special needs high schoolers are embarking on the last few years of socializing in a learning environment.  If, in other’s minds, they are not worth the work to the end, the whole community has been failed.

I introduced her to Addie’s dad, my husband.  He’s a recipient of The Joy Bus and (I think, I hope) it made sense to her.  I wish for everyone to have passion in their job and I hope she can find that with those kids at that HS.  For all those kids need maximum assistance from all of us.

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Of Road Trips and What Trips Me Up

Since after my father in law’s funeral in August, we have made the 400mi round-trip to feebly tie up loose ends and visit my mother in law. It’s not much of a secret and certainly, there’s a need to speak to why she isn’t living independently as a brave widow, like many women do. My mother in law is 80 and my father in law had spent his entire adulthood married to her. When their son, my husband, was diagnosed with ALL (a lymphoma) I knew I had to decide where my energy would go. So, for the past 2 years, all my cells have spent their energy on my husband’s care. My father in law, aging at the speed of sound, was a stubborn Polish man and my best guess is he did the best he could caring for himself and his wife, who had been exhibiting signs of dementia. Since his passing, she has resided in a care facility, safe but admittedly very lonely.  It is overwhelming to be packaging grief and care at the same time. She has to be carefully guided through the order of events. They can be bewildering to her. They are frustrating as well. Their home was left as if an alien ship landed and vaporized it’s residents. Her coffee cup, still sitting on the counter. 

We have made two visits to the cemetery. My father in law’s niche is in a columbaria, the third row in a Veterans National Cemetery near the Huachucas Mountains that roll off the nearby Fort where he served as a fireman for his civil service career. She’s a tiny woman these days. She struggles to reach the niche, it’s on the 4th row up. It doesn’t matter the time of day, the sun is strong and the mesquite trees are too far to offer any shade. She has moved through some of the grief and come from wanting to crawl up into the niche with him to accepting the idea that she can one day join him in that cubicle space. I’m torn. It’s very difficult to leave her alone. I suppose it is much like leaving children who don’t want to be left at daycare or surrendering a pet to the pound. I have to walk away….drive away….decompress about the state of things and hope that a solution presents itself. (Well all know they don’t really….one has to make things happen.)

The 200 mile drive home has been unremarkable. Twice a week, we enter the freeway 5 minutes from home on one end and 5 minutes from the nursing home on the return. I have become comfortable with the stretches of road that are rough and where the sun becomes a nuisance. I mindlessly set my cruise control to the changing speed limits as we enter and leave Tucson. I look forward to the first few and the last few saguaro cactus seen along the way. There’s opportunity for long held memories….eating at Nickerson Farms  (now just crumbling asphalt and a fading highway sign)….it was one of the few stops on I10 on the way to Phoenix. I anticipate the horizon unfolding. It rarely offers anything new…maybe a dust storm that makes Picacho Peak hazy. This Sunday, there was a funeral on the reservation,  East of Sacaton (before the Coolidge-Florence exit with a mega dose of feel good from a road trip to Globe with Karen and her Mom,Twila. That infusion keeps me from completely losing perspective and possibly my composure) Twila always said if you have something difficult to do, do some research and get to work. Easier said than done. 

I find myself scouring the roadside and taking note of what changes. Though, not much changes in a few days time. Much of it is the same…my to go cup of coffee, a basket of snacks, flip flops, NPR broadcast from Phoenix until Marana, then NPR from Univeristy of Arizona. The yellow Daisy – ish sunflowers suddenly appear East of Tucson, about the time the Ocotillo spring out of nowhere. There’s a seemingly terminal line of Union Pacific locomotives just off the highway. They sit, like a little boy had arranged them in a mile long string and ran off for dinner. 

So, in the video above is a stretch of road just before Casa Grande. In the last few frames, there is a Jackrabbit just outside the yellow stripe. I have reimagined his story everytime I have passed him. He’s not like a box that has fallen off a truck or a bag that has blown across the farm field. He doesn’t move. He is stretched out long, like rabbits do when they are resting under a tree in the afternoon. The sunlight still comes through his ears, the only part of his anatomy that makes him a rabbit.

One day, he won’t be there. It might be a force of physics that changes his coordinates, but it will be something and I think it will be my cue that something will change for me, too.

I’ll look for him. I’m ready for the change.

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Art Becomes Life Becomes Art

11802589_10153553286721532_4680979295742363942_oCreating a piece on canvas with paint, well used brushes, comfortable colors and that certain dose of inspiration that wills you to leave dishes undone and laundry in a heap….that is a moment that can stretch out to a couple of days.  Life will rear up around you and insist on some attention.  You will reach a point, maybe more than once, when you can step back and take a wide look at what came out of you.  There will be fits of anger swirled there and jags of crying pushed into the corners.  The finish is always a ‘top coat’ of hope, a reminder that life requires some resiliency to function with you in it.

Create a life with people,known for as many years as you are.  Choose comfortable surrounding, maybe the best you can do under the circumstances. Recognize that your passion for being in your own life are rooted in desires that make you want to bag it all and run off.  That’s not a bad thing, it’s the heart listening for the wild cries.  Art and those drives will rear up around you and insist on some attention.  You will reach a point, maybe more than once, when you step back and take a wide look at where you are and who you are doing life with.  You will take note of every fit of anger, all those long jags of crying, the pain of growing, the sheer terror of separating, the fears of being pushed into corners. A life lived will shine with hope and will remind you  that your impulses keep you functioning.

 

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On taking care of self

“You do too much”

“Learn to say no”

“You have to take care of you”

“If you would just …..

  • Exercise
  • Meditate
  • Go to that seminar
  • Come to this gathering
  • Go on vacation
  • Take time for yourself
  • Be a little selfish

“Listen to me”

Same instructions for living I would pass on to you.

There’s no complaint department for those who are asked to give and care for others. It’s exhausting. The human form can’t keep up a breakneck pace for too long. Rest is required. The mental condition requires dusting. Those who unwittingly step in the way (think medical receptionists, security workers, bus drivers) become the target of frustration that has maybe no sense of direction….it just bubbles up and winds up …..out.

The end of any day leaves lists of things undone. I used to make lists and used calendars with big open squares for jockeying days that things will get done. All I did was rearrange those squares day after day. Months would roll by before I made a copy of that key, signed up for that class, called the dentist, made an appointment for labs, checked on the state of special services, arranged respite, returned borrowed things, did some yoga, made sure I was eating well, returned a friend’s phone call, get a pedicure or a haircut, replace aging clothes. .  Take one look at me and see what you see. It may or may not be what I see. It may or may not be what I would like you to see. The truth is, I don’t really have time to think about what that would be.

Am I healthy?  Well, I do the things I need to do. I get around alright, though my body reminds me when I hit the ground that I’m not in my 40s anymore. I don’t think about my aging dependent child. In fact, I don’t even KNOW what she weighs. It doesn’t matter, I do it anyway. It’s like the price of gas. It doesn’t matter, you have to buy it anyway.

I have learned to stop many times in a day. It only takes a minute to run an errand that has been on the list for months or return a promised phone call. There comes a price for those kinds of accomplishments……the largest is the guilt. And then comes the promise to walk more, make lunches with friends, get to temple for services, register for classes.

It’s true what they say, there aren’t enough hours in a day. Rest requires some time. Respite requires some arrangement.

Take care of me. That means no self blame for getting every possible thing done. I work with what I have, little as it is. I know love when I see it and the best thing is that I can conjure love in the blink of an eye…..a life saving move.

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The Wait

The long, slow roll to another end
The brief tempt by a sharp word
The shape of an opposing thought

The mind knows which way to turn
Burn your back before your face
Dance with the urge to stare at an unfamiliar face

Jazz in the wires
Souls called in by name
The thanks, the time, the patience

The wait offers a screeching halt
A stiff stretch in motion
A lost unscheduled beat

Form plans to the decades out
Recall the possibilities in decades gone
The wait brings a heaped bowl of stopped time

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