Elder Abuse

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Today, I was supposed to go help my friend, F, reorganize her single large closet in her assisted living apartment.

We were going to sort through all the clothes she moved from her home, weeding out the ones she no longer wears or needs, and organizing her travel photo albums so that they would be on bookcases at floor level, instead of higher up on shelves in the closet where she can’t access their contents.

We were going to move the chest taking up space in her bedroom, blocking easy access to the closet, and we were going to find a way to store her granny cart and her vacuum so that they weren’t taking up valuable floor space outside her closet.

Instead, I’m going to be dealing with a panic attack over finances and trying to calm her down.

P, the controlling friend that has made all the decisions regarding F’s finances, is harping on the fact that F is spending “too much”, all while knowing she just sold her fully paid for home for $789k, and that the place F has chosen to live should run her about $70k to $80k per year.

Instead of treating F like an impaired but reasonable adult, P is refusing to answer F’s questions (regardless of how many times the questions are repeated), leaving F to play a tit-for-tat game of hiding her money (and pulling out a lot of cash so that she feels she has control of her money, since she’s no longer seeing monthly statements).

F’s determination to wrest control from the largely silent Canadian relatives who have all her money and power of attorney (now that she’s been declared in need of guardianship / conservatorship) is a drama that didn’t need to be.

But, I blame P as the instigator.

P is a control freak, in my humble opinion, and her unwillingness to answer F’s reasonable questions has lead directly to this crisis.

(Calling me last night about 8:30pm to cancel our get together today, and then calling me at 6:02am in a panic to discuss things, shows what stress F is being put under by receiving mixed messages and different answers from everyone in her life).

So, I’ll go see F later today as originally agreed.  We’ll work out a strategy for her to stay calm and – possibly? – get some answers.  And, I’ll give her some suggestions about how to stay calm and create a workable budget for weekly cash so that she has a negotiation strategy for dealing with the drama that I otherwise consider elder abuse.

Please, if you have an elderly friend whose elevator no longer goes consistently to the top floor…  just be kind.  Be patient.  Answer all their questions even if they’ve asked them 1,000 times.  Don’t bully them.  Don’t boss them.  Try to listen and be supportive without badmouthing anyone else trying to help them.  Just care enough to show up.

We’re all going to be in a vulnerable point at some stage of our life due to age, infirmity or financial vulnerability.  Just be patient.  Try your best to be kind and not make the situation worse.

 

 

Deadlines with Infinity

Trip is a man with 3 first names as his moniker.  A veteran.  A proud man.  He’s coming to the end of his battle with COPD.

Westpreußen, Russlanddeutsche Flüchtlinge

He’s as skinny as a rail as the fight to breathe is stripping the fat from his body.  He’s in tremendous pain from tumors in his lungs pressing on his heart and lungs.  And he’s spending every day waiting to die when it’s not yet his time.

The man has lost well over 60 pounds on his 6 foot 2 frame, but at 149 pounds he’s still getting up and driving and being ornery with his wife.

We have a group chat, a bunch of us from the COPD site, and Trip is expecting that his scans on Friday to see what’s going on with his heart and lungs will offer new hope for surgery.  Even though he’s been told that he’s too frail to operate on.  Even though they have been telling him for months that his only hope for pain management is hospice.

He is not going to go quietly into that everlasting night.

Instead, he’s badgering the Docs for a timeline as to when he will die, even as the rest of us counsel him that it’s not yet his time.

(In general, we find that dying is pretty predictable.  Folks have more exacerbations, they sleep more.  They stop caring about the world and go to bed and don’t get up.  Like my conversation with B, the boat captain, our team conversations are about dealing with our fears and finding a way to accept that we are dying.  Just not today.  Maybe not tomorrow.  There is no way anyone can give a person a timeline.  There is no date stamp on our feet).

I guess this is why I keep planning trips.  As long as I have something to look forward to, maybe my time won’t come any time soon, too.

We’ve all been there. Wanting the waiting to be over.  Wanting to know “when”.  It’s an unanswerable question as no one knows until one starts sleeping all day, being hard to rouse and stops eating, that their time is nearer.

We go out with a nap, and very rarely with a heart attack or during an exacerbation.  If we’re lucky, hospice respects our wish to end our struggles and helps us along with easy access to morphine to the point where we just stop breathing and aren’t in pain any more.

That’s how it was for my Mom.  That’s how it was for my Big Brother.

In Mom’s case, she didn’t die when she thought she was going to.  I was pestering my brother and sister long distance, and telling them to go lay eyes on her, that she wasn’t answering the phone, and I was 3,000 miles away and knowing that she wasn’t doing well.

Baby Sis found her.  Found her and called the ambulance and cleaned up the mess and got her into the hospital.  Only to lie to me for 9 days straight about what was going on, until the night that she called and said Mom was dying and I needed to be on the plane immediately.  Day 8.  35 pounds lighter, because Mom wouldn’t eat the food and had mentally checked out while trapped in the hospital.

Baby Sis accused me of willing our Mother to live.  That I was keeping Mom alive against her will.  Nothing that was said to the contrary was listened to, and I had to deal with Baby Sis’s railing against fate that Mom was in limbo and wasn’t dying fast enough.

So, after 3 days at home and fighting to get Mom’s wishes respected, I got her released from the hospital and brought home to die.  But, Mom perked up.  She thrived under Hospice care, and she had another, final, year with us before saying her final good byes.

We had a final game of scrabble on a cold and snowy Friday as I stayed at home with her, and she had a final meal (but for the life of me, I can’t recall what it was – just that she enjoyed it).  Mom went to sleep on the couch on Friday night after our last game of Scrabble, and then she was occupied with her dreams and visitors in her memory (or, maybe it was God and his angels – I’ll never be able to say).  I tried to rouse her once or twice to get up and use the bathroom, to eat, to go to her own bed, but she wouldn’t have any of it.

So, I slept in a chair by her side throughout the weekend, trying to ensure that she didn’t fall off the couch in her restlessness, and not wanting to leave her alone as something inside me just said that it was her time.

Monday morning dawned sunny and warm, with the recent snowfall melting, and my Big Brother came by again to check on her, and helped the hospice nurse move Mom into her bed.

With the sun shining on her as she lay in her bed, Mom passed peacefully in her sleep by 10am that morning.

In Big Brother’s case, which happened 6 short years after Mom’s death, he did everything he could to prepare his boys for adulthood.  His youngest had just completed his first year of college, and his oldest had just graduated on May 22, 2011.

I was back on the West Coast dealing with Las Vegas Auntie’s drama, and on the verge of homelessness from trying to care for her while getting her rehabbed and back on her feet.  I saw my brother at his oldest son’s graduation, and then he’d taken to his bed and was gone by June 1, 2011.  Peacefully, at home, in his favorite chair with all of us in attendance.

While I, too, face my own mortality, and know that they had a general forecast of 3-5 years for my stage of the disease when I stopped working, I have since passed the 3 year mark and am still doing well.

Will I make it to year 5?  Year 10?  No one knows as long as I stay stable.  So, I keep busy and try to be of comfort to others of my kind who are afraid of dying and want to know when they will be released from their worries.  It’s hard to say to them that they won’t have a date with infinity until they no longer care about life, but that’s what I’ve found to be the case.  I am not an expert, and I don’t want to be a caregiver or be dependent, but the reality is that life continues long after we’re tired of living.

So, rather than spending my time fighting with loved ones, I choose to go this road alone until my time comes, too.  Hopefully, my money will last and I will find a way to enjoy life despite any fears or worries.

 

Frailty

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I have a real hard time dealing with homelessness.  But, it’s hardest to deal with when:

– It’s a woman

– It’s raining

– The homeless person tries to connect with me to beg for money

In tonight’s encounter, I’m running around doing errands, spending money I don’t really have, but getting done what I must.  I’m also trying to get ready for a comedy show on Sunday night, so I’m trying to get spending money from the bank, gas up my car, and do all the other things that one does to prepare for a fun event with a friend.

So, it’s been pouring off and on all day, and I need to fill the tank.  Thinking about the route I’m traveling and the cheapest place to get gas without back tracking between where I was at and home, I decide to hit a local gas station that’s looking a bit seedy.

I do a run around all the pumps, and there’s some boards up by the garage doors, but the shop door is open.  All the pumps ONLY sell 87 regular gas, which is fine by me, but still weird.

So, I do the run around the pumps and end up parking farther away from the storefront than I would normally choose, but it looked safe.  Foolish me.

As I’m pumping the gas a seemingly homeless woman comes up to me and starts to beg.  I give her the hairy eye ball and gruffly tell her, “Not while I’m handling money!” in a firm voice.

As so many of the mentally frail do, she steps back immediately, hurt, and walks away upset because she feels I yelled at her.  She stops and says to me, “It’s ok to talk to you on the street!  I didn’t do anything wrong!” as she continues to walk away, agitated and upset.

Now, I don’t know this woman from Adam.  She’s not one of the regulars that I can recognize on sight.  But, she’s upset and I feel like I’ve kicked a kitten.

So, I proceed to fill my gas tank while keeping an eagle eye out.  She keeps an eye on me, and approaches a man coming out of the storefront, and he shoos her away, too.

The weather is miserable.  She’s mostly clean.  But, she’s in sandals and it’s wet and raw out.  She’s got a blanket over her shoulders, a hat on her head, and she’s layered up with these ridiculous bare feet in sandals.  Sad.

So, now I’m kicking myself for being so paranoid that I scared a sad homeless woman.  She could be me.  She could be my friend, C, who is now in the board and care home up in the Inland Empire area near the boonies…  I’m feeling like shit, when I was just protecting myself.  But, I need to make amends.

So, the car is full at 36 dollars, and I pull a $10 bill out of my wallet, heading toward the homeless woman who is now pacing and watching me approach.  Clearly, she’s in fear as to why I’m heading toward her after yelling at her.

“Look”, I say.  “You should NEVER come near anyone, but especially a woman, when we are filling up our cars and trapped at the pumps.  You scared me, and I worry about being mugged.  Now that I’m done filling my car, what did you want to ask me?”

Like a bird, she looked at me sideways, trying to smooth her ruffled feathers.  “I really just wanted to know if you could spare anything” she says, over the cigarette in her mouth.  “I’m sorry I scared you.”

“I’m sorry I upset you, too.” I replied.  “I appreciate your backing off when I asked you to leave me be, and I’m happy to share what I have with you in the hopes that it will help you in some small way.”

She smiles like a little kid at Christmas and takes the money.  “Can I give you a hug?” she asks, tentatively.

Now, anyone who knows me knows that I need my space and hate to be touched, but this was not about me.  This was about letting this woman know that I saw her and saw her humanity in a very difficult situation, so we hugged.

Not to miss an opportunity, she then asks if she can use my phone to call a friend for a ride.  I had to smile and let her know that I don’t carry a phone.  I’m not sure she believed me, but that’s ok.  I wasn’t going to be able to resolve her difficulties, but we’d come to terms so that I wasn’t adding to her burden for that small moment of time.

Frailty.  It comes to us all, and I’m thankful that I have a roof over my head on this Wintery, wet, night.  I still have $10 for my share of the concert parking tomorrow night, and life goes on.  Compromise and sharing a tiny bit of what I have allows me to look at myself in the mirror, even if the money goes for cigarettes and alcohol.  With any luck, it will go toward a nice meal and a dry place to sleep tonight, if she can find enough folks to pitch in.

Der Orange Doofus, however, is determined to divert money from our already weakened safety net, and it hurts me that people like this woman don’t have better resources than what she can beg on a rainy evening.  There but for the luck of the draw go I.

Dear Dr Ruth… Part II

I could have called this “Dale’s Departure”, too, as this is more than a sex blog, but you decide what to call it yourself, after you finish reading, if you’ve decided to continue with this tale.

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The original chat I’m writing about first began in Dear Dr. Ruth.    For those of you still interested in this chat, here’s the latest chapter where I pretend to be an expert on something that I’ve only dabbled in and researched on my own.  (Photo credit is “Quantum Leap”, and an episode where Sam got cast as Dr. Ruth).  

Sex and sexuality continues to be a huge taboo in the lives of healthy people, never mind folks who are disabled or dealing with a chronic illness.  I am here to say that handicapped or chronically ill people are not neuters or androgynous folks for whom sex and intimacy have no value.  We are not asexual children, for whom sexual activity has no interest as there are no hormones or memories of happier times driving us.

Everything works, even if it’s not in an appealing package or a body able to be supple and lithe and act on its urgings without effort.

sexuality and aging

What’s been really strange, though, is learning that my much younger cousin, as she’s entered her 40’s and following the passing of her Mother, is also going through a sexuality evolution very similar to what I experienced.

Even though we have different fathers (the brothers), I am left wondering if there is something damaged in our Paternal line that makes it easy to get between the ears of the women of our family.

Since she was raised Jewish, I know it’s not the Catholic guilt that I always blamed for myself.  But, raised to be “ladies”.  Raised at a time when sexual urges and women’s freedom to act on their own sexual interest was evolving, and also becoming sexually active in a time of fear for not knowing what caused HIV and AIDs, it’s strange to see my 10-15 years younger cousin going through many of the same personal quests that I went through following the death of our Moms.

Maybe we both have the same fear of being exposed and ridiculed for our decisions to be sexually active without the benefit of marriage.  But, whatever it was that got packed in our personal baggage, we’ve both done or are doing our best to root out the existence of fear and derision from the voices in the back of our brains.  That inner voice that never shuts up and always sees us as less than.  Less than desirable.  Less than capable.  Less than intelligent.  Whatever it is, I do find it funny that we two wallflowers ended up being cast as Dr. Ruth personalities in our very different lives.  She’s speaking to the shy women to try and free them of their self-imposed bonds, and I am speaking to the handicapped women.  Amazing what a small world it is.

At any rate, I digress.

I tend to do that when given free rein.

In this case, a few months have passed, and one of the COPDteam members tagged me in a private message to again discuss his concerns.  In this case, Dr. Ruth is turning into a grief counselor and life coach.

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(The picture which started this conversation was probably something like this shared on fb.  I love http://www.VineyardColors.com for helping me address my ever present homesickness with beautiful images):

vineyard

So, he reaches out to me (and, remember, I type a lot on the tablet, so please excuse my spelling and missed errors – I think you’ll get the gist of the conversation despite the typos.  I’m still the blue ink typist):

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(For anyone who wants to know what Hypoxia or Pulmonary Edema is, there will be a definition at the end.  Basically, he wanted reassurance that he wouldn’t suffer when his time came).

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60 degrees tracker

Another aside – temperature variations will kill us fastest with COPD, and many folks are too proud to acknowledge that they may not be able to afford to care for themselves as it gets closer to the end.  In my case, having learned from Dale’s situation, I have a temperature gauge in my house to verify what the actual indoor temperature is, and watch it like a hawk to make sure that my thrifty, Scot’s soul isn’t sabotaging my own health over my dislike of stale air plus worries that my money won’t stretch to heat my tin can home.

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I think in some ways it’s a betrayal of the private messenger to repeat this conversation verbatim.  However, since I’m hiding the names of the folks who are still alive and might object to something I’ve published being traced back to the correspondent, I’ve done what I could to recount a real-time concern while also hiding the identity of anyone involved.

Because these topics are so taboo to discuss, I want whoever goes through my blog to have the option to read what was going on in my life and my head, trash it all, or take it and make a book out of it which might help someone else in similar circumstances.

Once we’re no longer here, nothing much matters to the person that has left this earthly plane.  There will be no one left who cares about me to embarrass by anything I’ve said or done or written.

* * * * * * * * * * * * * * * * * * * * * * * *

Almost forgot – here’s what it usually says on the death certificate when one of us passes, and why my teammate was inquiring into the ways that Dale or Mom might have suffered before they passed.

hypoxia definition

hypoxia types

pulmnary edema definition

See?  Even the definitions leave you shaking your head and not wanting to think of the reality behind the process of dying.

 

Procrastination

I was going to call this something else, but Brian Lageose’s repost from 2010 distracted me.  Please be sure to check out Bonnywood Manor when you have a moment and need a laugh.

what are they doing now cat

With the inevitable distractibility of the ADHD and hopelessly bored natives of any land, or your average cat, I am *still* working on my 2016 taxes.  Today’s topic – medical mileage reimbursement write offs.

Started looking for the mileage reimbursement rate for 2016 for my business expenses, and then ran into this gem that I’d forgotten.  Since I no longer directly care for Auntie and am no longer scrambling for any claw back that might net me a few more pennies credit on my taxes as dealing with her mental health issues was sucking the life out of me, I forgot completely about the medical mileage reimbursement.

business mileage tax write off 02 2016

I do think it goes without saying, though, that the IRS exists to suck the life out of all of us.  One must embrace their inner OCD penny pincher and paper pusher if they have any hope of clawing back a decent refund.  (And, by decent, I mean a refund that will offset the cost of any next trip that I am planning).

flamingo 76 days

Today’s budget is being updated to note any extra driving for 2019 so that I am tracking the tax write off going forward (vs. trying to claw it back years after the fact during 2016 and 2017 tax filing hassles).

homework

It may be nickel and dimeing myself to death in the hope that I will eventually exceed 7.5% of my total income in order to claw back more discounts on what I need to pay, but I all can say is, “Hey – they started it !”

they started it

So, I’m sitting here working on my taxes, looking forward to the Golden Globe Awards tonight (one must critique who’s wearing what, and which MEN are dressed like little boys in too tight and too short suit coats, as if they are the Hulk, about to burst out of their clothing due to a recent growth spurt).  Yes, I need a life.

Real boys, who may be forgiven almost anything in a suit when trying to present the critical, “neat, clean, presentable” look that our parent’s always advised was best…

kids suits

Vs. grown men with too much money and too little personal fashion savvy for my taste as they try to relive their childhood:

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Not saying I’m any kind of fashionista who has my crap together, but you can bet that I *would* be dressed appropriately for my gender and the occasion.

Meanwhile, back to doing taxes for me…

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Adulting

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I was going to write something snide, or deep, about being an orphan at the holidays.  Plucky, I’m not.  I’m just a problem solver who choses to focus on what’s ahead, vs. mourning what’s left me behind.

However snide I may be from time to time, though, I’m not particularly deep.  Trust me.  I’m not.

I’m just very, very practical, which gets me compared to Mr. Spock.  Alot.

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Last night’s conversation with a fellow adult orphan was an exercise in futility because she thinks I’m some robotic, Spock-like being, and was focused on her own unhappiness as she dwelled on the fact that her life was what she made it.

Exactly what she made it.  Seriously.

No matter how many times I’ve told her that my health relies upon me being cool, calm, collected and avoiding stress and drama, she refuses to acknowledge that it doesn’t mean I don’t feel all these feelings.  I just deal with their emotional turmoil and upset by owning my hurt feelings or upset and moving on.  I don’t dwell on upsetting topics as it does no good AND doing so can wreck my health.  Seriously.  The first thing to get messed up when you’re crying is your breathing, and I don’t want to risk an exacerbation or a potentially expensive hospital stay simply because I refused to accept what life is showing me.

I’m also channeling Sheldon during some of these conversations, and it’s all I can do not to snap !

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We’re both now orphans 24 x 7 x 365 as our family trees have moved on without us, leaving the older deadwood behind.  You know, just like real life.

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In my friend’s case, she’s 53, never married, and again is worried she has nothing to show for it.  No partner.  No kids.  No big house filled with friends and family at the holidays.

But, if you’ve lived your life as you chose, how can one be upset over years-past decisions coming home to roost?  If you want a husband, you had to be willing to compromise to achieve that goal.  If you wanted children, you had to be willing to give up your role as the baby of the family.  If you wanted a house, you had to be willing to save and do without until you achieved that goal.  Life will always throw a monkey wrench into your plans, but if you were willing to try real hard, you might have accomplished one or more of those goals.

I wasn’t willing to follow the conventional path of partner, children, home = security.  My experience was that none of those things were without sorrow, violence and risk, so I made different choices in my life as a member of a very large family, and confident that I would always have that family.

What a folly !

People marry to continue families along new branches, and my choice to forgo that aspect of life meant that I became an adult orphan with no family willing to share their lives with me because I was no longer part of the core.  As the family tree continued to grow and branch out, I was left with bare branches and stunted growth.

While I accept the consequences of the choices I made, I always expected to leave the party early, and not be the one left behind, assessing my losses and missing people who are no longer here.  🎶  You’re missing 🎶

Last year was hard, having been informed that I was no longer part of the family due to my NOT being invited to a nephew’s wedding.

Spending Christmas in Jamaica and the Caribbean certainly helped to asuage my feelings of hurt and rejection, especially considering how hard I worked through the years to remain close to all the kids, providing vacations together, and visiting at least once a year.

However much one wishes that investments in people and time spent together results in a life-long connection – both through blood and shared memories – there is no guarantee that life is fair and that people will love you back.

When branches of the tree die off, leaving deadwood and islands of growth, one must learn to accept that one has also been left behind and is not considered part of the family anymore.

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I refuse to be the beggar at the feast, humbling myself when I am the slighted party.  Why do I bring this up now, though, ruining an otherwise Merry holiday?

Because sometimes life sucks, and one has to accept what is.  Not what we hope.  Not what we think we deserve based on status or hardwork.  Just accept life the way it is, and continue on the path you’ve chosen that otherwise fulfills you the remaining 364 days of the year.

If you’re lucky, people will accept the fact that you may be an orphan but you are not a waif – an object of pity in need of comforting.

You’ll make some favorite food you were wanting, you’ll fill your hours doing things you enjoy or which keep you too busy to think about what you’re lacking, and the holidays will pass.

You’ll be left in peace to do what you wish, and spend your life how you prefer.

If that doesn’t work for you, then please make new choices today, tomorrow and thereafter until you have achieved the quality of life you desire.

But, please…  don’t come crying to me about how abandoned you feel and how you thought your life would be more than what it is.  Don’t give me a hard time because I’m a stoic who chooses to find joy in life despite its reality, vs. crying over things I cannot change.  🎶 Life has killed the dream I dreamed 🎶

I’m a problem solver,  and I’ll only aggravate you by my decision to accept what cannot be changed and moving on.  We have it better than at any other time in history, so I refuse to dwell on why my life isn’t perfect.  I’m a big fan of adulting.

🎶 “The Dream I Dreamed” 🎶  from Les Miserables

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong
I dreamed a dream in times gone by
When hope was high and life worth living
I dreamed, that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted
But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
As they turn your dream to shame
He slept a summer by my side
He filled my days with endless wonder
He took my childhood in his stride
But he was gone when autumn came
And still I dream he’ll come to me
That we will live the years together
But there are dreams that cannot be
And there are storms we cannot weather
I had a dream my life would be
So different from this hell I’m living
So different now from what it seemed
Now life has killed the dream
I dreamed
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Except when you fail to make a family of your own…
🎶 You’re missing 🎶 Bruce Springsteen’s 9/11 ode
Shirts in the closet, shoes in the hall
Mama’s in the kitchen, baby and all
Everything is everything
Everything is everything
But you’re missing
Coffee cups on the counter, jackets on the chair
Papers on the doorstep, but you’re not there
Everything is everything
Everything is everything
But you’re missing
Pictures on the nightstand, TV’s on in the den
Your house is waiting, your house is waiting
For you to walk in, for you to walk in
But you’re missing, you’re missing
You’re missing when I shut out the lights
You’re missing, when I close my eyes
You’re missing, when I see the sun rise
You’re missing
Children are asking if it’s alright
Will you be in our arms tonight?
Morning is morning, the evening falls I got
Too much room in my bed, too many phone calls
How’s everything, everything?
Everything, everything
But you’re missing, you’re missing
God’s drifting in heaven, devil’s in the mailbox
I got dust on my shoes, nothing but teardrops

Stubborn

When you google stubborn, I’m surprised my face isn’t the first thing which shows up.

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I have a strong Irish temper, with shades of Scots, French and Brits to add ice to my ire.

Dealing with an inability to do anything very physical has always been a sore spot, and that frustration has grown as my wellness has declined.

This week, I’ve been busy trying to pass for normal and keep up.  Despite pain and numbness in my arm and shoulder, I was busy making product and trying to figure out how to pay for my portion of our new shops, and running on very little sleep.

I had zero patience, was in the middle of getting a crown put in ($ ca-ching!), and had just sorted dirty laundry to get caught up on household chores now that our recent holiday shows were done.

So, of course, the washing machine floods the laundry room and won’t drain.  No, I do not have time to deal with that !

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How much could a service call run?

How much could a new washer run?

All questions that I didn’t want to answer, so I spent way too much time in bed, avoiding the issue and being chilled to the bone…

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or, napping on the couch… when I could get Herself to allow me to be on it.  (Heaven forbid I should nap on my own couch without “sharing”)…

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But, I tell you all that to tell you this.  I won !  I won !  I won !

YouTube rocks for dealing with my anxiety about how to figure out how to get the front panel off and diagnose the problem…

 

So, a few more YouTube videos.  A few more naps.  I bought some quarters, “just in case” I couldn’t figure out the solution and implement the repair.  And I waited.

And waited.

And waited.

Tonight, after yet another Gingerbread Holiday Baking Championship viewing, and a nap, I was ready.

10:35pm, all Her stuff was swept out from under the laundry equipment (yes, the failure was all Katie’s fault.  She plays hockey with door stops, pens, bottle caps and catnip winebottles, all of which ended up out of reach, under the washing machine).

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I’m working on my second load of laundry (yes!), and while I’m now ready for yet another nap, I’m thrilled to report that I defeated the dreaded service call trap, and was able to repair it myself without any injuries or extra expense.

Merry Christmas to me and my stubbornness.

Plus, I’ll have clean clothes to wear tomorrow, when I go to get my crown installed.

Wish me luck that my dental plan paid more than expected, or at least what they should, so that I’ll either get money back, or at least not owe any more.

Merry Christmas to all, and to all a good night !

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Boundaries

end of life

I have a big mouth.

I think it goes without saying that I will call a spade a spade.

Yes, I will try and be diplomatic.  Yes, I will keep my opinions to myself (it *is* possible, I have tried to do it upon occasion).  But.  There comes a time when one steps over the boundaries to do a sanity check with a friend struggling to keep it together.

My childhood friend, D, doesn’t deal well with Death.  In her case, Death is always with a capital “D” because aging and end of life issues have become a boogey man in her life.

I try and talk to D a couple of times a year.  I’d talk to her more often, however, it’s hard to get her on the phone with any regularity, so I’ll often leave voicemails or send emails and hear back weeks or months later.

D has been engaged to a guy since 1998.  Very drama filled, but let’s just say that I thought it was a waste of time, and the intervening 20 years haven’t changed my mind.

The “brilliant” and “misunderstood” man hasn’t held a regular job in the intervening twenty (20) years.  He’s been a perpetual student.  He’s got a top government clearance, and yet worries about his ideas being stolen (one of his many reasons for why jobs don’t work out).  Crazy?  Probably.  Let’s just say that he’s not my cup of tea, but it’s not my business because I’m not the one sleeping with him.

So, fast forward to this past weekend.

I get a call that my friend is cooling her heels at the hospital, waiting for the emergency room staff to tell her if her boyfriend is going to live or die.  And, if he doesn’t die, what it’s going to take to help him live.

S, the boyfriend / fiancee, has had worsening health for the last twenty (20) years, and D has picked up more and more of the bills involved in his life, while not having the rights and privileges of a wife when the s*it hits the fan.

D spends most of her time at his house, helping to cover those bills and assisting in caring for his highly functional but mentally handicapped brother.  D even footed the bill for a “Rainman” like lawsuit between S and his brother, T, over who was the best caregiver for the younger brother.

So, you can guess that I’m not a fan of S.  I’m not a fan of one person sucking the other dry, and certainly not when it expands into other expenses that S should be fielding if he were truly the person he thinks he is in life.

bedsideVigil

So, almost 2 weeks have passed.  S is home.

D is spending time at his bedside, sitting vigil, as S continues to not care for himself properly, and the medicines for heart failure can only do so much.

I got a call last night, very late, as D had returned to her own apartment and set off the fire alarms, and was waiting for the appropriate techs to show up to repair the heat sensing equipment as she’d bashed the wrong item trying to get the system to be silent after she’d burned some toast.  (Yes, read that again.  D goes from one drama to another, and there’s never any one thing that anyone can identify that she should have done differently, but there’s always something that puts any problem right up and over the top).

So, we’re talking, and I open my big mouth.

I think I’ve said before that I dated a wonderful man with COPD that I met on a dating website.  Dale has since passed on, but I think of him often because it was one of the hardest things I’ve ever done – telling him that he could no longer be in my life because I couldn’t support the way he was handling his end of life issues and failing to take proper care of himself.

Yes, I’m opinionated.  That’s why this blog is titled, “Boundaries”.  I know I need to work on mine, as I suck at keeping my mouth shut.

Anyway…

D’s trying to stay awake until the repair tech gets there, and she begins to tell me that she’s given S an ultimatum about taking better care of himself, or she’s out of there.  I cheered.

Yes, it was bad form, but I was thrilled that she was finally looking out for number 1 in their relationship vs. continuing to be ok with having her life swallowed whole for his madness and choices.

Anyway, I recounted my story, plus the Valerie Bertinelli story where she tells Eddie Vanhalen that she wants a divorce as she cannot love him while he smokes himself to death, despite knowing that he’s had multiple run ins with oral cancer.  As Valerie and I both explain it, loving someone is a choice.  And, the love you have for another can be killed by the choices that they make over which we have no control or influence.

In Valerie’s case, she wasn’t going to enable Eddie to ignore her real concerns about his lifestyle choices.  She divorced Eddie and moved on while he was still alive, so that she could get used to being without him in her life while he was still available and refusing to compromise in a way that she needed in order for her love to be healthy for BOTH of them.

In my case, when Dale was unable to leave the hospital after and end of life COPD flare up because he lived off the grid and had no one at home to care for him, I agreed to help him get out of the hospital.  I had some strong requirements that Dale promised to do, and when he failed to do what I needed, I kicked him to the curb.

It wan’t that I didn’t love Dale.  It was that I was exhausted taking care of him in the six (6) weeks he lived in my home, and I was resentful of his deceitfulness and dependency, even though he’d assured me that he would get an apartment on the grid, he would arrange for the necessary home care, etc., etc., etc.

Dale made his situation worse, prior to his last exacerbation, by living off the grid and being unable or unwilling to turn on the generator when the solar power failed (it was Winter, and if we don’t get enough sunny weather, solar does need to be supplemented).   Dale ended up in the hospital with pneumonia because he failed the basic test for taking care of himself; he put saving money ahead of realizing and accepting that he no longer had the necessary strength to live off the grid and run the generator when the weather demanded it.

Maybe Dale wanted to die and was found before that ending occurred.  Whatever it was, once he moved in with me and was supposed to be recovering and getting back on his feet, I found him enjoying having the “little woman” taking care of him, and any effort he might have made to move into his own place conveniently fell by the wayside.

Instead of being honest about what he needed in life:

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he moved in with me and began to suck the life out of me.  Me, who is very determined to NOT be a burden to others, and who was clear that I would NOT be at his side at the end as I no longer had the stamina to be a caregiver.

I did that happily with my Mom, but my Mom also made everything very easy for me.  She thought about what her caregivers might need, and I had four (4) other people helping me care for her (my Big Brother and his wife, and my Baby Sis and her husband).

So, to go back to the point of this story… I blew through the boundaries last night in talking to D about her situation with S.  D has never been able to handle illness or end of life discussions, so I knew that taking care of him would be the thing that might end their relationship.

Since S won’t deal with what’s important to the both of them in preparing for his end of life (which is never known in advance, but which will come to us all in time), I figured that the drama would start again if she wasn’t able to draw a boundary line and keep it as S ignored the recommendations of his doctors and his physical therapists and nutritionists.

Hopefully, D will remain friends with me regardless of what she chooses to do about her life and where it overlaps that of S and his younger brother.  I am glad, though, that I spoke up so that she is not alone in knowing that her thoughts, whatever she chooses to do, are all perfectly acceptable.

We’re all going to die, someday.  But, embracing someone else’s slow demise does not have to figure in anyone’s life unless they choose to do so, and can handle the heart rending emotions involved in being a caregiver.

It’s not noble.

It’s not romatic.

It’s absolutely NOT pretty.

Being at someone’s side as they slowly decline is one of the toughest things that anyone can do for another person, and society should NEVER force someone into a role that they cannot handle.

Wanderings

Childhood Trails paved over 2018

The image above shows approximately 3 square miles, between Melrose and Wakefield Massachusetts, where I walked everywhere as a child.

The red anchor for Spring Street shows where I grew up, and the greenbelts to the West and South show the woods where I wandered unsupervised for hours, fishing, exploring and generally entertaining myself while staying out of trouble.

“Billy’s Famous Roast Beef” to the East side of the map shows part of Melrose, and Bay State Road where my material Grandparents lived.

To the South, the “Melrose Highlands” shows where I could walk to buy penny candy or buy a book with my weekly allowance.

I used to taboggan down hills beside the Greenwood Manor Nursing home in the Winter.  I used to flip rocks and look for tadpoles alongside the pumping station in the Spring.

No matter the weather, I was out and walking.

We only had 3 channels on our TV, and its was boring to be indoors where I was often stuck when I was sick or recuperating from surgery.   I was not a fan of the cold and damp, but anything was better than being trapped indoors if I was able to go outside.

So, while I’m no longer living in Massachusetts, I am trying to figure out the area where I live and how I can get outside during decent weather to ensure that I keep on moving and remain as healthy as possible.

Old people walking Oct 2018

I’ve signed up for some guided walking tours with local docents, and I’m hoping to explore more of the open space preserves, locally, on my own if I can’t find enough local walks with company that moves slowly enough along mostly-level lands for me to find it enjoyable.

Childhood Returns

While I cannot bring back my childhood, I am determined to find a way to do more walking from home (as I hate to drive when I’m tired, and not just because I could pose a threat to others when driving tired).

While my COPD does make it challenging for me to do a lot of physical things, I am hoping I retain enough of my common sense when tired to be able to walk safely and not have to worry about my physical vulnerability.  I have a can of pepper spray with me when walking on my own, and I’m good about bringing my phone (and keeping track of whether or not I have a signal) when out wandering.

I covered some beautiful spots last week while the weather was good, and while I came home for a very long nap afterward, I am determined to explore more of the local haunts on my own if the weather remains decent.  It’s a tough day when my number of steps are less than 1,000 – that’s absolutely no way to stay healthy !

Little Uvas Creek View Oct 2018

Having checked out the Little Uvas Creek Park as part of the Open Space Preserve, I’m hoping to make it over to the Eucalyptus Rest Area (with what appear to be conveniently located fishing ponds) by heading out for some shorter walks over the next week or two and before this month is done.

I can’t believe how willing I was to end it all last Fall, my breathing was so very difficult and labored as the fires went on and on.  But, I got better after we went to Jamaica for Christmas and the crud was baked out of my lungs, and I stayed better during our trip to the UK.

While still tiring very easily, the double dose of vitamin D3 is helping me to keep up my energy and keep moving despite being fatigued.  I still nap almost every day, and have trouble sleeping at night due to pain in my liver and back, but I’m doing better about keeping my naps short so that I can try and keep my waking and sleeping hours “normal” so that I don’t lose pace with the real life around me.

I hate the end of the Summer when it becomes too cold to swim as Fall takes over, but it’s better than it being rainy.  I have to be thankful that I am well enough to leave the house, and be grateful that I have some beautiful areas to explore.

Campfire_Girl

Invalidism Cult. Not.

Aetna Questions - Sep2018

It’s that time.  The annual Aetna audit, where they try and get me to get off my lazy butt and go back to work because I’m clearly faking it.

Unless my life resembles this kind of image:

Invalidism

I’m a big fake that needs to take her goldbricking @ss off disability and find a job that will employ me.   In any capacity.  Regardless of the fact that I am on SSDI for the rest of my life.  Regardless of the fact that one can barely survive financially without a medical condition on SSDI, and the fact that SSDI pays better than most minimum wage jobs.  When adding in my income from LTD, with an income of over $5,000 a month, combined, there is no way I could achieve that same level of financial independence with a part-time, minimum wage job.  AND, when you think that I used to make almost $12,000 a month before becoming disabled, it becomes a circuitous conversation where I just can’t win.

Clearly, in actually expecting the policy I paid into to be there for me when I am now disabled, I’m interfering with the profits of the insurance company.  You know, that policy I paid into for 42 long years of work, so that I would be covered in the event that I did not die before I reached retirement age, and I was no longer able to work.  That policy I paid into for 42 years via various employers.

Every time I’m audited by the insurance company, it sends me to a dark place emotionally.

Not because I’m not strong enough to stand up for myself, but because years of conditioning and hiding my bodies’ weaknesses to be able to pass for “normal” hinders my ability to stand up for myself and my state of disability without apologizing.

Now that I can no longer pass for normal, it feels like the insurance company and the minions of the great, indifferent, bureaucracy, live to make me feel like crap.  Worthless.  A user.

When they ask questions like, “Is patient able to endorse checks and direct the proceeds thereof?” I have to remind myself that I am not Alzheimers-stricken.  While I can have fatigue and not be able to perform at my best, especially if I’m tired and my oxygen saturation rates are low, I am NOT incompetent.

If I had my way, I’d fill out the form honestly, but any attempt to be honest has to be made by my doctor (i.e., my “co-conspirator” in their lingo), and he must also advocate for me to the best of his ability to foresee the fight looming over the benefits I receive.

Aetna Answers - blog

If I follow my instincts and answer the questions as shown above, I create a conundrum that they will use to show that I’m goldbricking.

I keep thinking, “there oughta be a law” that protects me from their harassing and abusive queries into my state of health, but the reality is that I am subject to their audits for as long as I am collecting money from their insurance policy.  Believe me, it’s a high price to pay – but especially when one considers that it’s payment being made after one has accepted being disabled, and after one has paid into their policy for many years.

Because I’m able to travel and go to swim classes, walk, and work in the garden, then I must be able to hold down a full time job and stop goldbricking.

Having just come back from a trip to Portland and Seattle, I can see their point.  But.  (Always a But…).  They don’t see my struggles.  They don’t WANT to see the nights where I don’t sleep well, or sometimes at all, because I’m taking too much breathing medication in order to keep up and functional.  Sunday, September 9th, through Tuesday, September 11th, I was traveling to Portland, via flight, and then driving to Canyonville, where I checked into a local casino.  While I got out and walked from time to time, and pulled to the side of a parking area to sleep when tired, there is nothing to show how much that effort took out of me.

When I was coming home, after messing up my rib, there is nothing to show I was in pain and suffering, trying to put a good face on things, while dreading every step I took trying to wear my backpack and carry back a shopping bag full of items to get to the Baggage Claim area.  There is nothing to show that I took over an hour to walk from the jetway to the baggage claim (enough time for them to pull my suitcase and put it into the missing / abandoned luggage area).

There is nothing to show that I took the next 2 days to rest up, moving to chair to couch to rocking chair, and napping from exhaustion while sleeping sitting up.  Instead, all they will see is that I was well enough to travel and visit friends, and my life didn’t involve a hospital stay at any point during the trip or when I returned home, so I should stop being a lazy @ss and get off my butt and get back to work.

I look at what Russ of www.COPDathlete.com is able to accomplish.  Being competitive, I wish I could embrace the solutions that have worked for him.  But, my reality is that I can’t tolerate half the food choices of other people, never mind experimental treatments such as taking ketone esters.

Because I can use the computer and advocate for myself, I am immediately suspect as a goldbricker.  It’s all so discouraging.