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 !

 

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.

 

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):

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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.

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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.