Declined. Again.

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Obviously, I’m frustrated.

First, because I have to spend HOURS on the phone trying to figure this drama out.  Second, because after spending all that time on the phone, the answer remains, “No.”

Under Obamacare, I was able to get medical coverage for the first time since 1992 that I could actually use.  2013, I had skin cancer in my shin, and they covered the cost of that surgery for $8,xxx and my out of pocket payment was $860.  $860 for surgery that saved my leg, if not my life.  Life changing.

I worked a Corporate job with excellent benefits from 1979 thru 2015, however, the coverage I paid for was not always usable by me due to my birth defects.  Rather than play the denial game, I simply lived beneath my means, and paid out of pocket for anything I needed.

I don’t drive a Cadillac or fancy sports car, so I don’t need a fancy medical plan.  However, the simple existence of my birth defects becoming public knowledge in 1992 when my medical records went digital meant that I routinely was denied medical care, and “No.” became the standard response for actually using the insurance that I paid for with each job.

With my departure from Corporate America in 2015, the battle for medical coverage reached new heights as I fought for coverage under COBRA for $644 per month.  And, as Aetna, my new insurer under my employer, decided that “No.” was now its favorite word.

In June 2016, I was finally approved for long term disability (LTD), and a 2-year waiting period to qualify for Medicare was also started.  Seriously.  I’m disabled, but there is zero insurance coverage?  Mind-blowing.

So, I paid my COBRA through December 31, 2017, with the knowledge that the benefits would be exhausted as of February 2018.  I tried to select a policy to cover me for my medical needs, but was told that I could not choose it until I was approved for Medicare, which happened mid-year, AFTER the open enrollment period.

There was no counseling for Medicare coverage, and I had to wing it on my own.  I contacted AARP who sent me to United Health Care (UHC), and they promised to cover me for a Medicare Supplement plan for about $150 a month.  I gave verbal approval to complete the forms they would send me, and they took $150 out of my Social Security Disability Insurance (SSDI) check each month, before I saw a penny.

However, no forms were signed.  Why?  Because, when I got to the question, “If you have COPD, please see question 7.”.  In its pre-qualification forms, UHC then informed me that I did not qualify for a Medicare Supplement as I was under 65 and had COPD.

Did you know that there are two (2) sets of rules for folks to qualify for Medicare?  No?  Well, let me tell you.  The protections that apply for workers who retire at age 65 or above are very different than the guidelines (not protections, but “guidelines”) which apply to disabled people under 65 or their specific age of authorized retirement.

Working since I was 13, I have paid into Social Security EVERY year for 42 years (excluding the year that my employer absconded with my tax and SS payments in 1975).

SSDI Earnings Record life long

It makes me crazy to have paid into my benefits for all these years, dealt with the denial of coverage for many of those years, finally gotten the necessary coverage my payments should have yielded under Obamacare, only to go back to this whack-a-mole game of trying to obtain the disappearing benefits – even when one is required to pay yet again for necessary coverage !

As you can see from my crazy paycheck history, my income changed all the time based on health, what type of job I was working, family issues for changing jobs and relocating, etc., etc., etc.  But every single year – regardless of what was going on it my life – I paid into the program(s) meant to help me if I became disabled or achieved retirement age.

So, it’s maddening to be declared unable to work, and then find out that in addition to the changes that were made to Social Security and Medicare over the years, there was an additional change that prevents someone who is not indigent and not yet of retirement age, to qualify for the necessary medical coverage they need when disabled.

Medigap insurers

Having worked my way through their websites (useless !  one cannot enroll on a website – WTF !?!???) I am at my whits end.

I can see a great policy – if only I were allowed to exercise the right to buy into this supplemental insurance !

Medigap F

Starting with the thought that my premium might be between $21 and $74 each month, imagine my surprise to chase this ever-evading insurance company ball all the way to the point where my costs would be $455.99 per month – if only I didn’t actually NEED my insurance due to my pre-existing condition, COPD.  So, having wasted time attending seminars, combing the website, consulting the professionals, and having spent three (3) hours on hold this morning, going through the phone tree with various companies, I once again confirmed – there will be NO INSURANCE COVERAGE for me due to my pre-existing condition.

It doesn’t matter that I never smoked.

It doesn’t matter that I’ve not been hospitalized since childhood.

It doesn’t matter that I’m not on oxygen.

It just matters that I have a lung disease which MIGHT cost them some money, so I get zero insurance coverage except for what remains of the original Medicare coverage which has been cannibalized within my lifetime to deprive me of benefits originally paid for when I first signed up for coverage in 1974, when I was a child of 13, starting my first job and trying to survive while my parents marriage imploded.

So, with all this under my belt, I’m going away to get my monthly haircut.  I’m out of energy and any semblance of patience for today, so I will be at this keyboard again tomorrow trying to find an insurance company to throw my money at in the hope that any worst-case medical expenses not covered by original Medicare will be picked up by them.  Medicare Allies says they can help.  Let’s hope they are being truthful in my case:

Medicare Allies 2019

Medicare open enrollment is frustrating.

So needlessly exhausting.

We need socialized medicine that doesn’t deny one coverage due to birth defects.  If we are going to insist on keeping these children alive by repairing their birth defects, then we need to have a medical insurance program that ensures that they maintain quality of life without being driven into poverty through covering their medical needs – if they are able to work, or were fortunate enough to be able to work and buy their way into benefits at some point during their lifetime.

Actions have consequences.  If we are going to insist on life at all costs, then we also need to insist on QUALITY of life by allowing those people who have birth defects to protect their assets against raiding.  The stress from trying to juggle all the bills involved in remaining healthy is exhausting, and no one is well enough, in my humble opinion, to want to sign up for this medical denial of coverage dance once a year during open enrollment, or every time they have to use the actual benefits they’ve paid for.

 

 

 

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.

 

 

Spoons

I can’t tell if I’m lazy or tired.  I can’t tell if I’m the source of the problem, or if forces beyond my control are holding me back and limiting me.

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Every day, it’s a challenge of positive thinking and trying vs. very real exhaustion and pain, plus limited financial resources.

Today’s the day my 2016 taxes were supposed to be done in order to comply with the law and get my refund.

Well, I missed that deadline.  Despite working on my  taxes with great intent since December.

…Is it my old nemesis, Laziness?

…Is it my “You’re not the boss of me!” reactionary thinking?

Today’s spoon theory above is contrasting with the, “Achievers do this” meme, below:

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While I know I’m willing to embrace change and fail in order to make progress in my life, I’m finding I have zip for “staying power”.  While I do accept full responsibility for my behavior, what does that mean in the bigger picture of my exhaustion causing me very real dollars in terms of handling my responsibilities?

No idea at this point, but since I’m sitting here writing a blog instead of getting on with life, I’m voting for some sort of laziness and ennui bolstering my very real exhaustion as demonstrated by the spoon theory / battery life poster:

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When you’re on vacation, there are distractions to keep your adrenaline pumping and driving you to keep up.  At home?  When I’m chilled and trying to find my motivation?  Nope.

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Today has now become a new chance to clean up an old mess or failure.

 

Bette

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I’ve been going to game night the last few Friday nights, and with every blessing, I truly feel one also receives a few slaps.

Mine is a very trying woman I’ve written about before, who has decided she likes me, but who drives me up the wall due to her narcissistic tendencies.

Let’s call her “Bette” in recognition of my particular favorite crazy, Bette Davis, in “Who’s Afraid of Baby Jane?”

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Bette is the 82 year old mother of 9 who has the will to be friendly, but has an overtly narcissistic personality which makes any attempt at friendship reciprocation challenging if not exhausting.

I get it.  Making friends is hard.  She’s trying.  We’re all trying.  But Bette is an emotional succubus that leaves you feeling exhausted and running for the hills.  Then, she gets her feelings hurt because she’s truly clueless about how to interact with people.

(Been there.  Done that.  I think I feel her pain).

Anyway, we have a Saint in our park who looks just like Katheryn Grayson, the 1950’s songstress in some of my favorite musicals.  Kathryn is Bette’s chief enabler.

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I say “enabler” because Bette wasn’t leaving her house without help and prodding, and Kathryn has now decided that she’s bringing Bette to Game Night on Fridays.

Now, I have nothing against anyone coming to game night, if they are going to GAME !

My manifesto:  I’m not here to be your personal servant (more about that later), I’m not here to look at 102 pictures of your life when we’re supposed to be playing, and I’m not here to wait on you while you wander off in the middle of a game.

In particular (my pet peeve), I don’t want you putting tiles down on the word game board unless you’re ready to play.

None of this putting various tiles in various spots, deciding you need popcorn refilled, wandering off to find your rosewood cane (that you don’t need right that minute!), and leaving the other 3 players in the game waiting for you to finish taking your turn and clueless about where you left off.

No !

One of our newer Park residents wanted to play “upwords”, which is a variation on Scrabble, and which I’d agreed to play the week before.

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I’d managed to avoid Bette and her killer perfume by changing tables the prior week, so our Kathryn kept her busy at the Yahtzee table while I slid away from her clouds of scent by moving to the Ski-Bo card table.

This time, I wasn’t so lucky.  I had to hear (again) about the husband who has been dead two (2) years as of Valentines Day.  (I swear, Bette can turn any topic into a reason why you should feel pity for Bette or feel you must rescue her).  I had to hear about yet another bipolar episode which left her stuck in the house for the last 3 months.  I had to hear how her kids never visit.  And, did I know she’s a mother of 9???  Her manipulative, self-centered focus is truly an art form.

I had to listen to Bette yelling for Kathryn Grayson to wait on her (Kathryn, by the way, has her own walker and mobility issues and was sitting 2 tables away), I had to switch seats with Bette as she claimed to have hearing only in her right ear, I had to jump up and get her food (anything to stop the yelling), and then I had to listen to muttered accusations against Kathryn for stealing her husbands “very valuable” 100 year old rosewood cane. The cane which was later found resting on a table top.

Drama, drama, drama !

I know we’re supposed to be kind to each other and help everyone from feeling ignored, but I’m putting my foot down over “upwards” or any slow-moving game at these kinds of evenings when I’m there.

The Bette’s of the world have no mute switch, and can’t tolerate a slow-moving game.  I’m trying to be reasonable, but I have my limits, too.  We’ve got to make sure that Bette sticks to fast moving games, or make sure that she sits at other tables where such games are being played as it’s just too frustrating for the rest of us to be stuck waiting on her.

Yes, my living situation is just like high school or Summer camp.  Games night is about all of us finding fun and friendship, and no one person derailing the intent of the gathering.  I do feel a private speech coming on, aimed squarely at Bette, again, and am glad I could control myself for this round.

Getting old isn’t for sissies !

 

Medical Ethics

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Alex Trebek and Garry Armstrong’s latest blog are on my mind as I sit down to deal with the issues of aging, and the cases of medical ethics which face all of us daily, whether or not we believe it.

First, the blog:  Remembering My Mentor – Jeff Krause

Next, Alex Trebek’s news:

Pancreatic Cancer Announcement

And, finally, Peter Zhu, who was left on life support despite being brain dead, due to his parent’s demand they be allowed to harvest his sperm to carry on the family name despite his premature death at 21 from a skiing accident.

What do two of of three of these cases have in common?  Money.  Money and the ability to change the outcome of history due to inroads in medical technology.

Garry wrote a lovely blog about his friend and mentor who died way too young, at age 53.  There is no ethics controversy there; I simply include it as a cross reference point for accepting the inevitability of death as a part of life.

(Stick with me here – I promise I’m not writing a Debbie Downer post).

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In the case of Alex Trebek, he’s 78 years old.  Please let that sink in.  78.

Due to an incredible income, believed to be $10 million a year, Alex can defy the odds of aging and do whatever he chooses to do with his disposable income.  In effect, he has suspended time and the normal effects of aging in his own life.

Alex also appears to be the king of his own domain, evading the stresses of life and retaining the joy in life and the will to live.

The reality, however, is that Stage IV Pancreatic Cancer comes with some complicating realities that may kill him, even if he survives the cancer diagnosis.  When one is at Stage IV, the cancer has spread to other organs in the body, which adds to the intricacies of the battle he’s facing.

Last night was “Survivor” night (my version of being a sports junkie is to watch the psychological dramas playing out on a deserted island among strangers who consciously became castaways due to the lures of money and insta-fame).  So, during the evening a conversation occurred, as they often do, regarding medical ethics, Alex Trebek, the deceased 21-year-old’s sperm, and whether or not Alex will be saved thru the removal of his pancreas.

Yep, that’s a typical conversation among me and my various friends.

We harked back to a conversation we’d had in January, about a friend who’d had her pancreas removed (becoming an instant Type 1 diabetic), and my Roomie’s belief that one could not live without a pancreas.  At that time, the Roomie mentioned another friends wife, and wondered why she’d died instead of having her pancreas removed if it was truly possible to live without a pancreas.

Well, last night we got more of an answer from the Alex Trebek story.  If other organs are infected with cancer, a pancreas removal may not be worthwhile.   (Side note:  I also went on to study my friend’s situation, the one who had her pancreas removed, and found that people live an average of 7 years following pancreas removal, so there is also the aspect that the ill person is only delaying the inevitable, as well as adding a major quality of life complication – T1 diabetes – into their life).

So, that brings the whole story around to death, accepting its inevitability, as well as embracing new medical science advances while also accepting that only some people, mostly affluent, will be able to take advantage of the options for cheating or delaying death, as well as the options to create new life.

Money is what drives the options.

Money is what enables freedom of choice.

Money is what disguises the normal ravages of time.

Money, resources to maintain quality of life despite complications, and the financial stability to pursue alternative choices that are out of the reach of most occupants of this planet.

Inevitability, the ethics debate becomes one of resource allocation.

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Because the Cadet’s family chooses to pursue it’s specific family genes in creating life, they are bypassing their option to adopt a child (or many children) already here and in need, and instead focusing on finding a surrogate to be impregnated with their dead son’s sperm.

One presume’s that the Zhu’s will choose to raise this child (or children) themselves.  And, if they find the surrogate is pregnant with female children, the question must also be asked – will they terminate the pregnancy until they get the desired boy?  Or,  will they have multiple children until the golden boy child is safely delivered?

Into these ethics concerns appears another question or influence:  Legacy tales.

As Garry has so beautifully written about his friend gone too soon in life, what will be the tales told to these surrogate-produced Grandchildren / children?  Will they have the issues with drugs, alcohol and early death as exhibited by the Kennedy Children, who were raised by grieving families?  Will the expectations put on their shoulders be the making of them or the ruination of them?

At what point do these moneyed people accept that death is a part of the circle of life, and not something to be feared?

No answers here, but I do continue to observe the human condition quite closely.   Especially the part where one is warned to “be careful what you wish for” as no one knows what repercussions tomorrow holds regarding the decisions made today.

 

 

Breakfast

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My magical elixir against reality.

Every two weeks or so, I have to pack my COPD and NAFLD and diabetes medications and supplements.  I pack them in a grab and go plastic baggie for each day so that I, a) Don’t have to think about or deal with assembling the magical stones meant to offset mortality, and, b)  Do my best to comply with my medication orders while also supplementing my Rx’s with dietary magic to make up for the fact that I don’t eat fruits and veggies, and with the hope that these vitamin fortifications will help me beat the reality of my physical frailty.

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I have a daily diary I keep, as if that will offset the Endocrinologist’s belief that I am gorging myself daily on sugars and carbs, sodas up the yin yang, and working to actively sabotage my various doctor’s efforts to keep this old carcass upright and moving.

I also try and cook most of my own meals to ensure I know exactly what I’m putting into my body, and that any forbidden sugars and carbs were in my diet with purpose and pre-planning.

Tonight, I’m going out to see Gabriel Iglesias, Stand Up Comic, and enjoy the crowd, the laughter, and share a moment with my buddy, R, who also loves stand up.

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So, knowing that I have to be able to stay awake for an extended period of time, and knowing that I don’t want to miss any part of tonight’s performance by mis-using my limited number of “spoons” for the day, or eating the wrong thing, etc., etc., etc…  I’m sitting on my couch and being oh so good.

Perfect, even.

I’m up.  I’m showered and groomed and resting.

I’m perfectly aware that one wrong decision could leave me exhausted and unable to hide my chronic condition, so I’m behaving.

I hate behaving, but I understand that’s it’s for the greater good.  I understand that self-sabotage by fighting against my reality hurts no one but me.  And, I’m ego centric enough that I want to pass for normal for as long as possible, whenever possible, so I do what I actively dislike and live a regimented life.

 

As Springsteen says in his recent Broadway show, it’s like my own litany of “Church, school, homework.  Church, school, homework.  Greenbeans.  Greenbeans.  Fucking greenbeans.”

In my case it’s:  Get up.  Take my meds with whatever food won’t derail my plans for the most energy in any given day.  And repeat those fucking steps ad nauseam until the weather improves so that I can leave this tin can of a home, or until my next trip comes around.

I know I have it better than so many other folks who can no longer leave their rooms or their homes.  Who are confined to a hospice bed in a hospital waiting for the end.  Or worse, who are out on the streets, truly destitute and without a place to call home.

But, as I sit here contemplating my medicated breakfast of champions, I just hear Springsteen in my head making me laugh.  “Greenbeans.  Greenbeans.  Fucking greenbeans.”  Yep.  It could be worse.

I might be at home in my childhood, dealing with my daily medication routine under the watchful eye of my mother, and facing a dinner of creamed peas and tuna.

Find your laughs where you can every day, and find a way to accept reasonable compromises so that you can do whatever you still desire to do despite the odds stacked against you.

Whatever you do, though.  Stay away from that fucking creamed peas and tuna.

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 pound 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.