It’s Been Almost a Year Since Dad Died…

I don’t think a day has gone by that I haven’t remembered that horrible last day, and yet the month leading up to that was kind of a trial run for what  Dad would deal with if he ended up in a nursing home… I’d never wish that on him.  There are a lot of nice nursing homes (I’ve worked in a few), and I have nothing against the nice ones at all… and can be a huge positive move when someone is mentally ready to make the decision.  But Dad had always been SO active.  Just six weeks before he died, he drove home from Florida in two days, ‘outrunning’ an ice storm.  He did all of the driving, though he had a friend with him for company . The second day, he drove from S. Georgia to home (near the IL/WI border) all in that second day. He never drove that far in one day when I was a kid, going to FL for Christmas vacations, when he felt OK.   He’d call me when he stopped for gas that second day, and ask me to look at the radar to see where the ‘ice line’ was… and he made it home by about 9 p.m.  He had been feeling bad, and wanted to get home to see his doctors (regular guy for the current stuff,  and oncologist  for routine follow ups after successful thyroid cancer treatment).   He felt bad.   He’d been in the hospital near Palm Beach for a couple of days, and it scared him.

The week before he died (when that wasn’t even on the radar), and after every other visitor had left, he asked me “what are you going to do with me?”   He’d been in rehab for about a week, after 3 weeks in the hospital.  I asked “What do you mean, what am I going to DO with you?”.   He asked about options if he couldn’t come home.   I had been making a lot of phone calls to various facilities that I knew were nice places with good reputations,  in the event dad couldn’t transfer with one assist (which he couldn’t at that time).  The one-person assist transfer was what would determine any real options.  I’d been getting quotes about hourly rates for Certified Nursing Assistants for 12-hour days; I would have stayed  during p.m. (and overnight hours)  after the CNA got him more or less tucked in for the night, and his friend would have taken the morning/day ‘shift’ so Dad was never alone with a stranger. We figured out how long we could swing that financially (it wasn’t that much extra to keep him in his own house vs. a private room in a nursing home, estimating the costs for medications, doctor visits, etc– but nursing homes are EXPENSIVE.  The daily rate only includes room and board- no meds, therapies, doctor visits, etc).  But it all depended on him being able to transfer with one assist.   At that time, he didn’t even know if he was actually standing up straight during therapy, and was totally unable to transfer without two people AND equipment (for safety).   It wasn’t looking good for going home, but I was willing to arrange things  if he got well enough to really have choices.  He totally understood the one-person transfer requirement,.  He knew  that was the only reason he was able to care for mom at home, as well as travel with her in those later dementia years, was because she was an easy transfer.  He understood.

Dad wasn’t a guy who would do well being subjected to other people’s schedules, the noise of call lights, having to wait to get something he asked for, confused patients wandering into his room, etc.    He would have been miserable in an institutional setting.  He would have missed his friends, church, and estate sales (though I’m sure his friends would have visited- still a huge emotional hurdle for someone who had been SO independent for so long).  This was a man who was always on the go.   Being stuck in a wheelchair, dependent for basic mobility/personal needs, and the noise would have been intolerable to him.  He was already having trouble hanging in there with the hospital “routine”.   He didn’t understand the process of what happens when a doctor writes an order for a new pain med (or anything else).  He hurt and didn’t see why it took so long for the doc to write the order, the unit clerk to send the order to the pharmacy, the pharmacy tech to fill it, the pharmacist to check it and call the doc if there were any issues – which meant the doc had to return the call, sending it back to the floor Dad was on, the nurse checking the medication, and then dealing with the thing that was like a medication vending machine, requiring scanning Dad’s arm band,  scanning the medication, and then marking that it had been given ( and being only one of 5-6 patients his nurse was keeping up with).  On a good day, that could take over an hour… standard hospital operations.  In a nursing home, a new prescription would likely arrive late at night with the routine pharmacy deliveries, though nursing homes are required per state regulations to keep initial doses of some of the more common meds to hold someone over until the deliveries came.   There are reasons things take so long, but that is of little help  to someone who just wants to feel better.

There was also the issue of  a private room – something Dad would panic about because of his uber sensitive hearing- misophonia- where ‘routine noises’ like snoring roommates, gum chewing, chattering visitors for the roommate, chatting in the room with his friends,  etc were actually way more than annoying to him .   They almost caused a panic reaction, and more than once his blood pressure went very high just because someone was chewing/snapping gum close enough that he could hear it.  He couldn’t help it.   He didn’t have any control over the reactions, which could be rather angry and cause physical symptoms.  So a private room in the hospital or any facility was “mandatory” to him.   He’d literally beg me to “promise I get a private room”  when he was in the ER, and I told him I’d do what I could, and then I’d beg the admitting doc to write the order for a private room, explaining the situation.   They were always accommodating, but hospitals and nursing homes MUST  save some private rooms open for infectious patients – or  like  in my case with the leukemia, minimizing exposure to ‘outside’ people  who may have had  a minor cold, or a sick kid at home.   Fortunately, he got private rooms- and I had to explain many times, to whoever I was talking to that it wasn’t a ‘snob’ thing, or that he was the sort to isolate… it was actually a painful situation to hear certain noises.

I think dad knew that he wasn’t ever  going to  come home.  In those quiet early evenings alone with him in the hospital or rehab hospital, he’d give me lists of some of his possessions that he wanted specific people to have.  We had  always had a very open relationship about ‘end of life’  decisions, other health topics, or whatever,  so I didn’t think it was that odd.  And  fear can be expressed in ‘final wishes’, even if someone is expected to recover.  It didn’t strike me as odd.   I just kept making notes.   I’m so glad I did.

Backtracking a bit, that first night in the hospital (March 3, 2016), he was terrified.  He asked me to look at his feet, and I said I’d be happy to, but wondered what I was looking for.  He asked if his feet looked like my mom’s did during her final 30 hours.  Hers had been mottled with the coloring I’d seen many, many times in people who were very close to death.   I told him that his feet looked fine, and were warm,  had good general color, had good capillary refill (how fast it takes for the color to return to normal, after  enough gentle pressure  to make the skin turn very pale), etc.  He was so terrified.  I made a promise to him that night that no matter what,  I’d be honest with him about what was going on, and if my nursing experience wasn’t enough to know the answer, I’d find out and tell him.    He told me that I helped ‘calm him’.  I wasn’t able to be up at the hospital as much as I wanted to (mobility issues, heat intolerance, needing the wheelchair, increasing pain the more consecutive days I went up there, etc), though we talked daily.  I talked to his nurses (which he wasn’t that thrilled about if they were in the room, as the “racket” of discussing his care/condition annoyed him- or, my favorite- “don’t bother them”… he never quite got comfortable with the idea of telling them he needed or wanted something, unless it was for pain- and Dad didn’t even own Tylenol… he had little frame of reference with pain,and generally waited too long to ask for something). I had phone calls from the social worker working on discharge planning, and other behind the scenes stuff- getting rid of the ancient food in his fridge (and replacing it as promised), getting stuff he wanted from home, and checking in to things as he requested.

One late afternoon, he told me he needed the urinal, so I got it for him and told him I’d be in the hall by the door so he could let me know when he was done.  He told me that all dignity he had was shot, and didn’t care if I stayed… but he was my DAD ❤  I wasn’t going to not give him privacy.  He had the sheet covering him, but still…  His only complaint was that I hadn’t let the leg part of the bed down… “Can you fix this so I’m not peeing uphill?”…. Yep, Dad,  I can do that.  🙂  He hated having   to  ask for any sort of assistance for basic daily needs.  I could tell that it was wearing down.    He felt helpless, and that just wasn’t  Dad.

ALL of these things help in a way for my grief process (I don’t mean that to sound selfish)… Dad would have been miserable in a nursing home IF he’d been able to survive any type of surgery.  He likely would have ended up with a colostomy, and whatever was going on with his spine wouldn’t have gotten better.  We never did know what the lesions pressing on his spinal cord were…. he’d had biopsies of all sorts of things, MRIs (that’s a whole other story), bloodwork,  ultrasounds, and whatnot.   It wasn’t for lack of trying that the cause of those spine lesions wasn’t found.   As much as I miss Dad, I know that being in “the home” would have broken his heart.  He would have put up a socially acceptable front, at least for a while.  He was such a great social person.

I knew something was changing the summer before when he was offered the chance to be on a private 160 foot yacht, going around Sicily, with his friend and her family (son-in-law was way up there in the top %1).  He loved to travel, but didn’t want to go.  First he said he thought he might get seasick.  He had been in the NAVY… not for long (knee issue), but seriously?  He’d also co-owned a sailboat, and loved sailing with his cousin in Milwaukee when he and his wife lived there.  Seasickness wasn’t going to fly with me.  I pressed him, and he said he was just too tired- he didn’t want to be a dud guest with keeping up with conversation (something dad had always been really good at).  That made more sense.  I got his OK to talk to his oncologist (same one I’d had for a while) so that on his next visit they could do any additional lab work at the same time they did the routine stuff.  Turned out that his thyroid meds needed tweeking.   But for him to turn down a trip?  That scared me.   In some ways, the early twinges of grief had already started when he was still very much alive and active.  His health was becoming an issue- which was very new.

On that last horrible day, it also helped that the ER docs were so amazing in how they tried everything they could to make sure that nothing was overlooked when he was admitted that last time.   They called four  specialists (urology, infections disease, surgeon, and gastroenterologist).  They pulled me out of the room, and were SO kind in helping me make the decision that was really already made by the disease process.  They made sure I knew what was going on, though when I saw the lab work and  heard that the infection from the ruptured diverticula  had gotten to his blood, and many other places... I knew.  I let them know I was an RN since 1985 (disabled, but keep my license active).  I understood the ‘head’ stuff.  My ‘heart’ was a mess… but Dad and I had talked about what he wanted, and I promised him I’d do whatever that was.  I did.  Signing the Do Not Resuscitate form was excruciating… but I’d promised him.

His docs during the hospital stay prior to rehab were also amazing, from his regular oncologist to the rotating hospitalists and specialists.  He got good care in the hospital .  One of the nurses went above and beyond when he found out Dad liked Heath bars… he’d seen some of the mini ones in a bowl at the nurses station, and snagged some for dad.
I’ve mentioned this before, but it’s something that goes through my head a lot (along with the initial delirium, when the mentally intact man I’d talked to less than 10 hours earlier was incapable of making decisions).  I was pulled out of the ER room so the docs could tell me what the CT showed.   Dad was resting quietly at the time (after a wild time getting the IV in so they could give him pain meds), but I went back in and told him that the docs knew what was going on but they couldn’t fix him.  HIs eyes were closed, but he nodded when I asked if we were still on board to get through this with as much comfort as possible.  He nodded when I asked if he was ready to see Mom.  And I promised I wouldn’t leave him.

Those last few hours  were (and still are)  so precious.  A couple of Dad’s very close friends, and his cousin had been up to see him.   I just watched, talked  to him a little, held his hand, kept his lips moistened, and whatnot.  Some say that being there when someone dies is’t really for the dying person;  it’s for who is left behind.   I’m not sure i agree with that completely, but it is true that I would have been devastated if I hadn’t been there for him, if he had died alone.    Whether or not he heard me didn’t matter nearly as much as  it did for me to know that he wasn’t alone.   He was showing some signs of abnormal brain activity (snout reflex when I used the swabs to clean his mouth).   The toxins were taking him.

I miss him so much, and yet I’m thankful that he didn’t end up in a nursing home.  He would have felt  so defeated.   He wanted a quick death (who doesn’t ?).  While the back pain had been around for months, the infection that killed him didn’t get to the point of  him being really sick until those last couple of  days.   He had time to give me more instructions, and spend time with close friends and family.   He didn’t “linger” which is what he wanted.   The Palliative Care team at Swede’s was fantastic.   They included me in nearly every decision.  That helped me feel like I was an active part of   dad’s final  wishes.   So yeah, I guess that being close is more for those left behind- but at the same time, you never know how much hearing remains, or what senses are ‘enough’ for the patient to know that they’re not alone.   And I had to keep my promise.

*** please pardon any typos… my eyes are ‘swimming’ as I’m ready for bed.  I’ll fix them tomorrow 😉

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The Disaster That Was 2016

I’m not in a good mood.  This year has sucked rocks.  I won’t go through the myriad of shootings, public riots, celebrity deaths, cop shootings,  “unarmed” shootings, local crime rate, racial tension,   blah, blah, blah.  All that does is make me dislike humans more intensely (and with the racial stuff, it’s usually the arrogant white folks that piss me off the most).   Since my dad died in April of 2016, I have had few interactions that I really cared to be a part of.   They were ‘mandatory’ or required to be just social ‘enough’.   If I tried to escape  I’d turn on the TV  just to hear about how horrifically humans were treating each other, and it just made me grieve for civilization.   Thank God there were enough interactions with a  few people that at least kept my head above water enough to breathe.   I’m very grateful for them.

The presidential election process further lowered my respect for humans in general (a few exceptions helped me not lose all hope).  One relationship ended because of the rabid and incessant postings of negativity about Obama…. get the hell over it- he was elected nearly eight years ago… MOVE ON.  I can’t stand the constant and so ‘wing-nut right’ rants.     I didn’t much like any of the candidates this year, but the options in the end were  almost unbearably bleak… one much more  than the other (imho), and that’s who we’re stuck with now.  It does warm my heart that he didn’t win the popular vote.  There’s a glimmer of sunshine there. Doesn’t matter who specifically won the popular vote, as long as it wasn’t the sociopath.   I’m grateful for that bit of hope.

Back to my dad.   He died on April 4th at 12:50 a.m.  He wasn’t ‘expected’ to die during that period of illness, and like my mom, he had been blown off when he complained about pain/had symptoms.  Don’t go to rehab hospitals where they have such narrow focus.  They try to fit all symptoms into the disorder they are treating.  Dad’s former (very sweet) lady friend of eight years went to the same place, and she called me to ask what she should do since they weren’t dealing with the fluid accumulation in her abdomen (she had cancer).  I told her to ask to go to the ER for an evaluation.  She did, and ended up having to have multiple ‘drainings’ of the fluid. But the facility didn’t come up with the idea to send her in for evaluation on their own- she had to ask.    I wish I’d been more astute with dad’s pain.  He wasn’t great at describing pain, but I feel bad that I didn’t see more.  I am extremely relieved that I was with him during those last 19 hours.  To have missed that would have killed me.  I made sure he knew I wasn’t leaving him before he went into a coma.  I promised not to leave him, and I didn’t .    But as an RN since 1985 (regardless of being disabled, I keep my license), I have constant ‘brain drain’ about what I should have done to help him more.  He was a great dad.  He didn’t deserve that much pain.  He deserved to be listened to and believed by the people who were supposed to be caring for him.

There was another ‘lady friend’ ( “B”) that dad hung out with socially for about a year before he died, and who was around  like flies at a picnic during the last month of his life. She encouraged him to be dependent, and robbed him of whatever independent activities he could do… which weren’t many.   She turned into more of a nightmare after he died.  She obviously had some intense delusions about the type of relationship she had with dad.  Dad truly  liked the companionship (and her billionaire son in law fascinated him- only thing he mentioned if someone asked if he was seeing someone- never mentioned her by name).  She liked “possession” of him (and had a total hissy fit when I told another one of dad’s lady friends she could put photos on the photo table at the visitation; it was a pathological reaction- they were. not. married.  I included as many of his special lady friends as I could find photos of) .  She also hurt me intensely after the funeral, complaining that she wasn’t mentioned by name ‘enough’ during HIS funeral.  She said her church friends all noticed it and that the pastor who did the service had it in for her since she wasn’t a member of dad’s church… that pastor hadn’t even worked at that church for a while… “B” was clueless and so friggin’ insecure and paranoid.  She wanted to know why I hadn’t consulted her about financial matters (like it’s her business- she was fishing for info, imho).  She also told me (dad’s daughter) that SHE would miss dad the most.  Seriously?   He was my DAD.   She was a 1.2% part of his life. That’s it.  Barely existed (would you miss 1.2 cents from a buck?)  She told me that dad didn’t like the one  lady friend (with photos, who he’d known since high school), and I knew that wasn’t true.  That’s when I started to see “B”  more clearly.  She fabricated things to make her feel like his lifelong love… well, she missed that train when mom married him, and then the wonderful lady he saw for eight years after mom died.  I’d lost my dad, and she was ragging on about all sorts of stuff.  Sure, I knew she’d miss him.  But her degree of histrionics was exhausting and painful.  “B” was creepy- saying that she saw him looking back at her when she put his glasses on her kitchen table (she had a mild conniption at the visitation about when dad’s glasses were going to be taken off… I told her to take them just to shut her up).  I do hope she’s well ( and well away from me).  I pray that her macular degeneration is stable, and not getting worse.  And I want nothing to do with her.  I had to have the garage door opener codes changed because she refused to give me back the one she was last known to have.  I added keyless deadbolts.   When I think of her now, I wonder about her DSM-V diagnoses.   And I still wish her well.

I’ve been contacted via greeting cards by two of my deceased mom’s siblings who made sure I was excluded as ‘family’ while they manipulated and dismantled my late grandmother’s trust (grandma was spineless when it came to standing up for what was fair… she got bullied and she folded) . It was mangled after my mom died, and the surviving siblings kept ensuring they profited off of their dead siblings each time one of them died.   Once someone writes me off, it’s over.   I don’t want to  be reminded of their existence with hypocritical cards.   Either I’m part of the family, or not.  Can’t have both.  They deleted me based on lies they KNEW were lies.  That’s what gets me the most.  Screw the money.  I’d settle for truth – but that bunch is incapable.  Leifheit Logic in that generation has been sketchy at best for decades.    My mom was in that generation, and her biggest ‘flaw’ in regards to logic was keeping her marriage vows and having strong faith… maybe they resented her for that… ?  .    Hard to tell with narcissists. I do know that I want nothing to do with them.   They ‘cancelled’ my family ‘membership’ – and that’s just fine.  But be done with it already.   GO AWAY, even via mail.   I am thankful that the six cousins I have from the other ‘discarded’ sibling understand that we’re worth nothing to the greed-mongers.  I didn’t even tell mom’s surviving siblings  when dad died; they found out on Facebook…  never occurred to me to consider them part of the family to notify.  They dumped me about 5 months earlier.  It wasn’t even an issue in my mind/life.

I’m going in to 2017 with a questionable mass on my neck.  I have a CT scan scheduled for a week from tomorrow.  The hope is that it’s just a lipoma (nothing major), but with my crazy medical history, including a LOT of chemo for leukemia, there is always a  question about more cancer.  Chemo can cause cancer (isn’t that special?) .    It has no doubt contributed to the increase in peripheral neuropathy (including the dysautonomia/POTS).  But without it, I would have been dead in 2010.  Pain is more intense now, including the degenerative disc and joint disease.   I see a new chiropractor next week to hopefully put my neck ‘back in place’.  But, I’m alive.  That is still worth it.

I know I have a lot to be thankful for.  That isn’t lost on me by a long shot.  But like anybody I still have my bad days, and today is a really lousy one.   Next year, I MUST lose weight.  I need to do all I can to avoid future joint replacements and minimize joint and disc pain.   I have to get more focused on keeping track of carbohydrates and insulin requirements.   Right now, my blood sugars are very unstable.  Stress isn’t helping that.   But I’ve got my dog.  She is always happy to be around me, and I’m so thankful for her.

Mostly, I’m thankful for God.  That is my ‘Constant’ and my Hope.  I don’t generally find organized religion to be satisfying, but I do love the Lord.  Call it what you want if you don’t believe… for me , my faith is the only thing that keeps me going.   I know that this life is temporary, and that after this earth, it’s all good.   I don’t like the politics of Christians.   I aim to be more compassionate than the judging and ‘dismissing’ of entire groups of people – and I’m not unaware that my feelings about that are also judging and dismissing (I’m working on that).  And, I still love God more than any human I’ve ever met.  Fortunately, I had a  great earthly father to show me a small example of what a Heavenly Father feels for His children.   When this earth and its people depress me, I remember God.  He has this all in control.   I don’t have to worry about any of the mess going on… in the end, good wins.   I don’t have to worry about what others do, or use them as political pawns.  I only answer for what I do.  When there’s nobody to talk to, God is always there.   No matter what, God is my refuge and joy.  He is what makes tolerating this earth bearable.   I know it’s all going to be OK one day.  Maybe not soon, or maybe tomorrow. It doesn’t matter when.    He wins every time.    And I know that HE  alone can help me see things in a way that is less painful.  HE can remind me of the good that is already here.   I don’t think I’d be able to function if I didn’t have that hope and assurance.

Furnishing a House And Keeping My Parents Living There With Me Through Memories and Decorative Items

The past few weeks since dad died have been the days I’ve been most dreading for quite a while (starting in earnest last summer when he was too tired to go on a private yacht for a week.  He claimed seasickness- that didn’t fly as he’d been in the navy and had a sailboat with two other couples.  Then it was too much fatigue- which was a huge change; this guy ran around ALL the time.   He was changing, and his mortality slapped me upside the head.  With both parents gone, I feel like I’m about 12 years old some days (and younger on other days, for bits of time) when nothing seems like it’s going to be OK, even though I know eventually the pain dulls, and the memories of good times will again get brighter.  Right now, it’s just a rat maze going through the paperwork things, keeping up with two ‘abodes’, and working to get the decisions made for what I want changed in the house without removing either of my folks from it.   I miss my daddy… haven’t called him that since about first grade.   Tonight I asked my uncle Russ if here was still a pair of shoes (or something ) that I could put with mom’s on a Welcome Mat inside the door.  I’ve got a pair of mom’s (with San Diego animal park shoelaces) that will work well- and Russ has a pair at the house in mind for dad’s.  ❤

My dad designed that house with his cousin (who is an amazing architect), and put a lot of time into it. I want to keep those special touches that remind me of him.  There are bricks from the streets of Chicago from the time of the Great Fire that make up the living room fireplace – 14 feet tall on one half of the ‘Great Room’ (remember Mrs.  O’Leary’s agitated cow?), a custom stained glass window in the gable of the vaulted ceiling in the kitchen, and an acre in the back of the house, with partially wild grass and trees- very private, and beautiful during seasonal changes- snow is gorgeous back there.  There are a lot of birds, squirrels, sometimes deer, wild turkeys, and other critters, which I love.

It was all put together by a family friend who is a great contractor (still in business), which has been HUGE in helping me get through the various updates I want to get done- the guy who built it has been out measuring, and his son and project manager have been walking me through all of it; they’ve been wonderful.  What they don’t do, they know someone who does that works with them often.   The carpet is the original stuff from 1976.  It’s gotta go- it’s got green tints where there were no drapes (on purpose).  Window treatments must be changed- the drapes are ‘nice’, and in good condition, but not my thing- I MUST have something that directs light away from me because of the dysautonomia and temperature regulation in my body.  The windows face east-west on either side of the house, so sauna material if I’m not careful.  The bathroom wallpaper is “disco era”, with foil.  It’s in outstanding condition, so for now, it stays.  I can live with that.

Dad and I had talked about things I liked and others I’d probably change long before he died.  His taste was “House Beautiful” (with antiques and high end collectibles- that  are  now at an auction house)… I’m more “House Standing”, with comfortable furniture and a casual vibe that I hope is inviting, as well as a place I’ll stay in as long as I’m still breathing air.  There were a couple of things that I hadn’t anticipated (isn’t that how it always goes?) that ate about a third of my original ‘goal’ budget… but I want to get it all done right, so it seemed like a no-brainer.  I found an alternate for a pantry that will work well, and saved me a few thousand bucks.

After getting a check from the first auction of dad’s belongings that I didn’t keep, I set off to a local mom and pop furniture store that has been in town for  a LONG time.  They’re having their grand opening of a store closer to me, which I hadn’t realized was still going on, so that was a nice surprise to know I’d get %20 off (roughly).   I’d set out for 2 green recliners  (only) that felt like sitting in a cloud, but had to swivel to either talk with guests or watch show falling/thunderstorms from the windows in the living room. If I can get the gas fireplace going, that’s another form of live entertainment.  Anyway, the chairs will be made to my preferences.   I hadn’t expected to be able to get a couch in a custom fabric for what I could afford, a beautiful Amish (simple design, well made) BED- the whole thing, headboard, frame, and foot board, and a great  buffet – all in my taste.  Very simple designs, sturdy, and fit into a contemporary house in the main part, with the Amish bed working with my quilt and a bit more retro/mild country vibe in there.  The kitchen will be a bit of an eclectic bouquet- but still keep the colors dad worked so hard to pick out for the counter overlay and bigger items.  There are a few cosmetic cabinet things that I need to get done – but all in due time.

This might not sound like an earth shattering event to a lot of people, but it’s the first  time I’ve been able to pick out everything I like !  I’m not refurnishing the whole place- I still have some nice pieces here, as well as some things I’m keeping at the house that dad had.  When dad found out that the reason I didn’t have much furniture in Texas (and nothing new) because of financial constraints, he sent me money if I’d find a second hand item in good condition.  He did buy me a new dinette set (was eating at a card table for over 20 years), as well as a group of end tables and coffee table, and a 32 inch TV when my 13 inch set that I got  in late high school  had lost so much horizontal hold that I got audio and about an inch of the “picture”, but it had lasted for about  20 years ! .   The ‘new’ TV even made it back to my hometown when I moved 1250 miles back to help take care of my mom (she died in 2003, which was unexpected), and was then graduated to the flat screen.   Now, I have at least 4 other TVs (dad had one in his bedroom, my old bedroom (his self-proclaimed den),  living room, and kitchen… I forget if one was in the downstairs living area  or not- it’s designed for visitors for the most part).

The dining room table was made for the house, and is a big, solid piece of table, covered in formica- doesn’t sound that exciting, but in the “Great Room”, it works very well.  Chairs from an old opera house from somewhere around here surround it.  Those stay.  🙂   Living in apartments for  30 years has been great in a lot of ways; I’ve moved a lot, maintenance was a phone call or e-mail away, etc.  But white walls (I will have those at the house  mostly,  except for the  wood paneling walls that are painted a shade of almond, and the disco wallpaper, which is fine- outstanding installation), the less expensive carpet in apartments, dinky refrigerators, some seriously funky linoleum over the years, and NO ‘right’ to do my own thing has been annoying.  Then there are the views.  One takes what one wants if the price, neighborhood, and location work.   For the last 13 years, I’ve had a nice apartment, but my view is of a parking lot and a tree. My second apartment in Austin,TX overlooked a relic car part lot… never saw so many Corsairs in various stages of decomposition.    I do have nice neighbors here at the apartment now- and I will miss them.  I spent time growing up at the “new” neighborhood, but don’t recognize the vast majority of the folks there.

It is fun to pick out new things, but it’s also really important to me to keep my parents’ presence in that house.  They are what made it a home.  The scuff marks at the top of the stairs from dad’s shoes will stay.  Mom’s wheelchair marks on the bedroom door will also be untouched.  There are some things that nobody but me will appreciate, and that’s fine. Dad left me a wonderful home and “yard” (more than an acre, WITH his lawn guy staying on for the weekly trims).  It gets harder to know he won’t be coming back.. it’s only been  a month and a half since he died (time gets so warped).  I was pretty sick with bronchitis for a couple of weeks after going gangbusters with “getting it done” (I’d ‘house sat’ for dad whenever he was out of town, so knew what as in the house, and what I didn’t want to keep).    I’ve slowed down a bit, but still moving forward.

But I really miss him.  Fifty-two years, I was blessed enough to call that man my dad. ❤

My Earthly Rock…. Part Two

This is the hard part… it’s hard to write these memories, that are so fresh.

Dad was transferred to the rehab hospital on March 24, 2016,  three weeks after being admitted to the hospital.   He was very nervous about the rehab hospital not wanting to take him because of various symptoms associated with the spinal cord pressure from the lesion that was still not identified after several biopsies (the spinal cord lesions, bone marrow biopsy- nothing was ever identified as cancer).  I reassured him (or tried to) that those issues were why they were in business.   Dad was willing to give it all he had.  He was weak after three weeks in bed.  During his time in acute care, all transfers were done with lifts or passive movement (mostly to avoid the hospital staff getting back injuries).  He hadn’t been up on his feet for those three weeks.  For each day in bed, %3 of muscle strength is lost.  That’s why it’s so important to be up as much as possible when someone is sick and/or in the hospital.  But sometimes, it’s unavoidable.

The first day dad had physical therapy at the rehab  hospital,  I wanted to be there to get an idea of how he was starting out.   With two therapy staff, putting their shoes in front and back of dad’s shoed feet, and him pushing up from the elevated therapy mat, he was able to stand up absolutely perfectly… but he couldn’t tell he was vertical, and he felt like he was falling.  He knew he was up, but had no idea where he was in space (proprioception issue).   He had a look of terror in his eyes, but he was doing everything they asked him to do.  Everything.   I was actually very encouraged by what I saw, and it brought tears to my eyes.  It really looked like he had a good chance at getting strong enough to go home.  He had to be able to transfer with one assist (one person) in order to go home, and if the first day had him ‘up’, I was thinking that a few weeks would have him that much stronger.  I  kept telling him “you’re doing SO good!”.  And I meant it.

During the initial acute care hospitalization, and continuing in varying degrees, dad had been having stomach pain (he’d also been hospitalized in Florida for stomach issues that were thought to be food poisoning).  It was thought to be from the way the nerves worked coming from the area of the spinal cord with the most pressure on it.   I questioned why nobody was trying to figure out how to help that, and I was sort of dismissed as just not understanding that it was from the spinal cord pressure.   I had worked neuro when I got out of nursing school, as well as various types of rehab during the 20 years I was able to work as an RN.  I understood the obvious symptoms, but knowing my DAD, I also knew that nobody was even considering that something else could be causing a problem.   Being out of an acute hospital sort of narrows focus.  Nobody was looking for any other problem.   And that was a huge omission.  I don’t know if anything could have been done, but nobody was looking.

The stomach pain continued to be a problem in regards to general comfort (progressing to suffering), ability to eat, and his general feeling of not going to be OK.   Come to find out, dad was right.  There was something going on that nobody knew about.  He’d been telling me specific things he wanted done if he died.  He had me write them down.  There were four things he wanted done specifically with three paintings and a  small Steiff teddy bear.  I wrote them down, but never thought that he was not going to get through rehab.

On April 3, at 5:20  that Sunday morning, I got a call from the rehab hospital to tell me that dad was having more intense abdominal pain, and his blood pressure had dropped when they got him up to use the bedside commode; he needed to go to the ER.  I jumped out of bed and grabbed what I might need (my medications) for the day, and took off to try to catch the ambulance to make sure we got to the hospital where dad had been prior to rehab.  I understood that they HAVE to go to the closest one if someone’s vital signs are too unstable, but thankfully they went to the hospital with his more current records about the current situation.  I wasn’t prepared for what I saw when I got back to the room to see dad.

He was delirious from pain as well as sepsis (which was discovered through the ER blood testing).   He was unable to give the right year, and wasn’t cooperating with the nurses as they tried to get an IV in to give him pain medications.   Normally, dad would joke around with those trying to help him, but he kept telling us all to “shut up” (not a phrase he used), “get my overcoat”, and “goodnight, goodnight, goodnight”  (wanted to be left alone). He was also doing these weird biting gestures towards his female friend when she got there.  I got  up near his head to talk to him (and wiping his mouth after he vomited), and explaining that everything that was going on was to help him.  He’d acknowledge that he’d heard me, but was still erratic and ‘not right’.  Eventually, the nurses got an IV in to give him pain meds (and nausea meds), which did help him settle down.   I’d never seen dad like he was that morning, and it scared me, but I had to stay in ‘nurse mode’.   I knew that I’d just become responsible for decisions regarding his care.  He was no longer capable of making rational decisions about his health.  The POAH (Power of Attorney for Healthcare) had just kicked in.  That made me so sad.  Dad had always been able to make good decisions, and his mind had always been so sharp, with a great sense of humor.

Dad was sent for an abdominal CT scan, to find a source for the pain.   When the ER doc pulled me out of the room to tell me what was going on, I was completely caught off guard.  Even the ER docs and radiologist weren’t expecting what they found on that scan. There was a ‘diverticula’ (small pocket that extends from the intestinal wall) that had ruptured.  Dad had never been diagnosed with diverticulosis (the outpouchings) or diverticulitis (inflammation of the outpouchings).  The contents of dad’s bowel had been spilling into his abdominal cavity, causing extreme infection to the point that his system wasn’t able to fight it off (peritonitis with sepsis/septic shock).  The bacteria had also spilled into his bloodstream causing the sepsis and septic shock (what  made his blood pressure drop).  The sepsis was so severe that it was producing gas in his abdominal cavity and bladder.   Four specialists that were contacted, and nobody could fix it. Only one came in to see him (urology guy), and he said that the catheter was the only fix for gas in the bladder (which had already been inserted when he got there).  A general surgeon, urologist, infectious disease doc, and internal medicine doc- and the ER folks- all said that dad was going to die, more by what they didn’t do than what they said.   I knew what they were saying, and yet it didn’t seem possible that this vibrant man who had driven home from south Florida just weeks earlier was going to die very soon.  And that I was responsible for any decisions until that happened.

Dad and I had discussed end of life care many times, and I knew what he wanted.  He didn’t want anything heroic or that would prolong the inevitable.  The disease process was making all of the decisions for him for the most part, I just had to sign off on not doing anything active, other than whatever it took for comfort.   I knew that he didn’t want to be a full code- he had made himself a “no code” when he was initially hospitalized in March.  But signing that “Do Not Resuscitate” paper broke my heart.  I felt like I was giving up on him, and yet I knew that keeping him in a state of intense suffering would have been cruel and selfish. The ER doctor and nurse practitioner made sure I understood what was going on, as well as the inability to offer any hope besides comfort care.  When  I told them that I’d been an RN since 1985,  they sort of relaxed a bit.

I had gone back in to talk to dad, telling him that they knew why he was so sick, and that they couldn’t fix it.  He nodded enough to let me know that he heard me.  When I asked him if he was ready for comfort care only, he nodded (not that we really had a choice).  When I asked if he was ready to see mom, he nodded again.   I had promised him that first day he was in the hospital (March 3) that I’d be honest with him about anything I knew, and I felt that I needed to keep my end of things regarding what the CT scan had shown.  That was one of the hardest things I’ve ever had to do.  He had a right to know.  He almost seemed relieved.  He’d been in so much pain, and was facing dependency in a nursing home if he couldn’t transfer with only one person.  That wasn’t my dad.  My dad was the guy who got up at 7:00 a.m. to go stand in line at estate sales, or drive crazy distances while traveling.  He wanted to live as long as possible, so when he nodded that he was ‘ready’, I knew that he needed the ultimate relief of being healed by the Great Physician.  He was ready to see God.

They offered a bed in ICU, which would have driven dad nuts with all of the bells and alarms, and it wouldn’t have fixed anything.  Dad hated any extraneous noises, so I knew he just wanted a private room where it was quiet.  With any admission, he’d beg me (literally) to make sure he got a private room.  I had to tell him those times that I’d do what I could, but hospitals have to reserve some private rooms for people who are admitted with infections that would put others at risk.  But with palliative care (end of life), private rooms are generally available.  So that’s where we went… to a room on the cancer floor where they were used to handling patients who were there for comfort care only, until the inevitable happened.

I had called one of dad’s close friends earlier that day while dad was in the ER, and let him know what was going on.  He had been able to get to dad’s Sunday School class and let them know  en masse, which was incredibly helpful (one of dad’s lifelong friends was also in that class, and he came up when dad was still in the ER).  Those two friends were able to come and visit, and another friend had dad’s brother’s phone number (he was in Florida) so I could let him know as soon as I got it.  My uncle called dad’s local cousins, who were able to see dad later that afternoon, after dad had lost consciousness.  But they were there, and able to spend time with dad once he got to the room.  I firmly believe that it’s important to let people know that they aren’t alone, even if they can’t respond.  It was important that those friends and family be able to see dad before he died.   The friend that I first called (I had his phone number, as he was my ‘go to’ guy while dad was in Florida) arrived after dad was in the room, and I went out to tell him that dad was dying… I’ll never forget the look on his face. Nobody was expecting things to change so drastically.  Both of those friends had seen dad the day before, when he seemed to be doing better.  Looking back, it’s likely that the diverticula had already ruptured, and the pressure was relieved, so he felt better- but that started the cascade of toxins in his system, that ultimately caused the septic shock which is what killed him.

During the time in the room, the nurses were fantastic about watching dad’s comfort level. Even when someone can’t verbalize how they feel, it’s easy to watch restlessness, picking at blankets or clothing (dad kept trying to remove his gown, so I just took it off and kept him covered with the sheet and blanket),  moans, etc.   I was there from the time he got to the ER that morning, and  alone with him after 9:00 p.m. or so, when the others went home.   I wanted that time alone with him, knowing that those were going to be the last hours I’d ever have with my dad.

The nurses would come in periodically, and ask if I wanted certain things done (blood pressure, blood sugar, catheter, etc).  I agreed to anything that was for comfort (the catheter helped decompress the gas that had built up in his bladder, but there was already no urine being produced).  Nothing was going to be fixed by having his arm squeezed for a blood pressure reading (but I did agree to them doing it if they needed it for paperwork; they didn’t).  His blood sugar wasn’t going to get better (he’d been on steroids for the spinal cord pressure, which are known to elevate blood sugar, as can infection).   I’d had to make the same decisions when my mom died.  Dad had deferred to me once he knew that mom wasn’t going to recover from her sepsis caused by a urinary tract infection that was blown off at a hospital in Sun City West, AZ (not Mayo).  It was a horrible repeat of her death in many ways.

For almost four hours, I was alone with dad.  I’d sort of flip flop between ‘daughter’ and ‘nurse’ mode.   Sometimes, I’d sit in the recliner by his bed and just listen to his breathing, never wanting it to stop, but knowing that he needed to get some perfect peace.  Other times, I’d  sit on the bed, and hold his hand or stroke his cheek with the back of my hand, telling him how lucky I’d been to have him for a dad.   I reassured him that I’d be OK, but that I’d miss him.  I let him know that I knew he’d been working so hard to go home, but if he was ready to rest, it was OK  (it’s important to let people know that if they die, loved ones will be OK).  The nurse medicated him a couple of times when his breathing indicated that he was likely uncomfortable.  And, I’d  cry, knowing that ‘it’ was going to ‘happen’ soon.  Those hours were both precious and excruciating.

Finally, his breathing eased into a gentle rhythm.  There was no struggle.  He just slowed somewhat, and then his breathing gradually and gently slowed to a stop.  I was sitting on the bed with him when he went to be with the Lord.  There was a single facial ‘contortion’, and then ultimate peace and healing.  He was reunited with mom (they’d been together for 46 years), and his love after mom had died (Marilyn- 8 years).  He got to see his two sons who had died as newborns, within a couple of weeks after their separate births.  He was reunited with many friends and family.  And, most importantly, he was finally free of the pain and fear that had gripped him for many weeks.

It’s only been a little over a month since dad left this earth.  I will always be so thankful for the 52 years I had him.  He was my biggest ‘cheerleader’, and always had my best interests in mind.   I miss him.  A lot.  But with hope in the promises of the God I believe in, I know I’ll see him again.

My Earthly Rock… Part One

The last couple of months have been heart wrenching.  My dad died.  He was 83 years young, and until the end, he was very active.  A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm.   He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died.  But let me back up a bit.

My dad had always been pretty healthy.  He had the standard appendectomy and gallbladder surgeries.  He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation.   This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve.   When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer.  I wasn’t (and still am not) very happy about that.  I feel he should have been seen in person.  Just as a matter of good care for something that wasn’t part of dad’s history.  Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean.  During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go.  He felt bad enough after that to want to get home as soon as possible,  to see his own doctor who finally ordered an x-ray when he got back.  X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing).  The x-ray didn’t show much besides some normal aging changes.  The doc also gave dad some pain meds, which did help a bit.  But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field).  He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements.  The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back).   The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day.  He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them.  The next day, Thursday March 3, dad called me at 8:00 a.m.  Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine.  Dad always respected that, so I knew that if he was calling, something was really wrong.   He said he couldn’t walk right.  He’d gotten to the bathroom, but needed me to get over there as soon as I could.  I asked him if I had time for a shower, and he said yes.  I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum.  When I got there, dad was sitting on the bed.  He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool.   I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room.   After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests).  Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI.  Dad was not amused, and was very anxious about the whole thing.  He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft.  He said it wasn’t so bad.  The results weren’t so good.  They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine.  It was enough to admit him.   And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free).   The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI.  He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up.  Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979.  SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills.   But first,  more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk.  He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands.  The pain at this point was the worst, but only really bad if he had to move.  I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain.  Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference).  But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened.  He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read.   Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home.   At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab).   He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would  only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT).   He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home.   So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

…. on to Part Two.

Ramblings of 2015

Here it is… New Year’s Eve.  Getting ready for 2016.   It’s been a bumpy 2015, though I realize I still have a lot to be thankful for.  A lot has happened.  A few things are still being diagnosed.    There have been family changes.   And like always, I seem to manage… but it’s getting harder to do it on my own.   Fortunately, I believe that God has it all figured out. I don’t have to understand it all…

Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful.  I hadn’t been getting to the REM stage, so restorative sleep was kaput.  I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped.  The morning headaches have pretty much disappeared (that alone was worth the price of admission).  I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream.  Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK.  The increase in the quality of my sleep has perked me up, so I want to do more.  I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.

Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration.  From the head down:  scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again,  legs started having intense burning pain (as in being set on fire… not sunburn), right leg  atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting.  Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.

The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different).  I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through.  SO, I’m usually mostly bald, and flaky.  Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off.  Lovely.  And, yet that is more of an annoyance than life-altering.

The swallowing is still being evaluated.  So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes).  They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time.  I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK.    In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are  more carbohydrate ‘intense’, which hasn’t done much for my blood sugars.  SO, add a gastroenterologist, and return visits to my endocrinologist.

The reflux was also really bad, but changing some of what I eat, as well as  a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat.   I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.

I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on.  That MRI was horrible.  I’ve had a lot of MRIs, and usually it’s no big deal.  This one was for both my lower back and neck (it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time.  I bailed after the “without” part of the test. I got both the neck and lower back done, but  I couldn’t take  being on my back any longer, not able to move.   Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours).   The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain.  It fixes nothing except perception.  I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine.  In the meantime, it’s pain meds (that I don’t like).  They do help, but I am very careful about making sure I don’t get too used to taking them.  I’m not concerned about addiction.  I get no ‘perks’ other than pain relief.  I use them as directed.  But physical tolerance is something that happens with several types of meds even when used as directed.  It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped.  So I’m careful. I don’t use them every day.   I follow the dose instructions.  I don’t mess with them.

During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions.  My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys.  After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease).  One thing that has always spooked me about being diabetic is kidney failure.  I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack.  That’s not a life in my eyes.   Just my opinion, though I’m sure if it came down to it, I’d do dialysis for  a while, and make any other decisions along the way.

My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy.   Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse.  During the summer, I started having sensory issues.   As in it felt like my right thigh was literally on fire.  Ignited with an accelerant type of fire, not a sunburn.  I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me.  If/when I got myself rolled over ON to the burning leg, it would start to subside.  The same area was numb to touch all the time… Back to the neurologist for another EMG.  The sensory peripheral neuropathy was now said to be progressive (I think most of them are).    Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take.  And, to have her check my muscle strength.  The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can.  The other leg decided to join in the burning pain and numbness, so it’s a two-fer now.   The wheelchair has been a huge help  in getting around at church (I joined a women’s Bible study this fall- the first socialization in years).  I hope to go to the mall soon.  😀 DSCN4140

With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic.  One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up.  Time to head for home.  Don’t pass go. Don’t collect $200.   My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,  (paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia.  The good news was that my EKG in the office was OK (which was expected).  My echocardiogram (ultrasound of heart) was OK.  Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this  :p .  Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying.  I’ve done them twice.  I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive.   I’ll go see her again in a couple of months as a follow-up.

Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with.  I hadn’t seen her in about two years…. I’m SO tired of seeing doctors.  But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take.  I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !!  That was huge !  I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) .  God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price).  But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year !  😮

SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc.   Good to have all of those folks to help.

My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased.  From my standpoint, there is no more family besides my six cousins (in one family).   I am in contact with my mom’s deceased brother’s kids, and that’s it.  Toxic people can be prayed for from a distance.  I will always wish them well.  I will not be part of the games by pretending that it was all OK.  I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said.   Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on).  And it really doesn’t matter anymore.  It will be very clear in the end when we all meet our Maker.  The aunt and uncle (living siblings of my grandma’s) have to live with themselves.  I don’t.

I’m so thankful for my dad.  He’s my earthly ‘rock’.   He’s 83 years old, and going strong.  We talk every day, and see each other at least weekly.   It’s a gift to still have him in my life.    We joke with each other all the time, which is great- but I’m also so grateful for him.

Shelby turned three years old on Christmas Eve.  She’s still a ‘puppy’ at heart, and my baby.   She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place.   She really is a wonderful companion.  She’s nuts… but that’s fine ❤ DSCN4026

Joining a women’s Bible study was great and I look forward to the new semester starting next week.  It’s been a LONG time since I’ve had much continual socialization opportunities.  I have to take my cooling vest, wheelchair, and Bible with the  specific study guides, but it is such a blessing to feel like I’m a bit of a part of something.  It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people.  I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an  hour each Sunday 😉 ).  It was great to see someone from the past.

A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way.  I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study).  That trumps the bad stuff to the moon and back.   I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun.   I have a great relationship with my birth mom, as well as her extended family.   I can still live in my own apartment, and have my goofy dog.  Through Facebook, I can remain in contact with family,  friends from Texas, as well as those I’ve known from before then.   No matter what is going on, I believe that God has it all under control for His good.   I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on.  I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things.   God is good.

Bring it on, 2016 !  😉

 

 

I Just Need To Write…

It’s been a weird few weeks in a lot of ways, and I’ve been exhausted.  Today when I woke up, I got the message from one of my cousins that her dad (my late mother’s brother) had passed away.  He’d been sick for a relatively short period of time (well, that we know of- he hadn’t been to a doctor in almost 60 years), and was diagnosed with end stage esophageal cancer.  He was getting it treated, and long story short, they found him very early this morning just before his heart stopped.

I have so many emotions going through my mind.  First, I feel for my cousins, their spouses, and assorted grandkids and great-grandkids.  Their dad had never been easy to deal with, but he was the only dad/in-law/grandfather on that side that they’d known.  It’s a loss, regardless of how close they’d been, or what he’d been like to them over the years.  There is no chance for  additional healing at this point, with him directly.  They can only fish through their own memories and pain, and figure out how to remember him over the long run.  It might be easier to deal with anger now, but there will still be some degree of the type of pain that comes from a little kid who lost their daddy- even if it comes out sideways. The only dad they knew is gone.

I feel sad for my uncle, that he created his world in the way that he did.  He and my mom were siblings.  My mom also had multiple sites of cancer, and while she beat it, the radiation to her brain left her demented for the last 10 years of her life.  She wasn’t mean or unkind (most of the time), but before her cancer, when I was a kid, she  was hard to ‘read’ – and that was very hard as a kid to figure out. I didn’t know if she liked me, and sometimes she was unkind (though I don’t think she always meant it to be that way), and it took until my 30s to figure out that it had nothing to do with me… she was wounded in some ways that I knew about, and undoubtedly in ways I had no clue about.  Their mom was orphaned at age 6, and she had her issues with attachment (that she talked to me about- not just me speculating), which didn’t help with being a mom to her four kids- though her issues were more with ‘omission’ than ‘commission’…she was afraid to lose more people, and didn’t want to get too close.  She turned 100 years old two days ago… and today she will find out that she’s outlived a second ‘child’.

It’s sad that my uncle  pushed people away by bullying them (that was when he was being kind).  And at other times, he was very generous in hosting family reunions that were no easy or inexpensive tasks.  There were a lot of us roaming, eating, and talking through a full weekend.  Sure, some of it was to show off his home (which is very nice), but he didn’t have to do it.   I ended contact with him when he lied about a conversation that was deeply hurtful, and he called me ‘human debris’, and said he was ashamed to be my uncle.  Fine.  No more relationship.  End of story; I won’t stay through that sort of thing  (and that was a drop in the bucket compared to being raised by him),  though I did e-mail him when I found out about his illness to let him know I’d be praying for him, and if he had any questions I could help with as an RN, I was available.  I’m not sure if he answered back, or someone else did, but I got a reply.   I know I can feel OK in that I reached out.  But I’m still really sad that he died.  Mostly because he left so much unfinished business with his kids and surviving siblings.  I feel so badly for them.  None of them ever did anything to warrant the way he treated them.

In general, to folks who have pushed people away by being abusive jerks, fix it before your time is up (which could be anytime, we are never guaranteed a tomorrow).  Understand that your interactions mean something, and leave lasting impressions and scars.  The world isn’t all about you, but how you either add to it, or make things worse for others.  For those who are afraid to lose someone, so you keep people at an arm’s distance, know that you also have an impact on those around you, especially if you have kids.

For those who have been hurt by someone close, especially as a kid, know that it wasn’t about you.  It was the one who caused pain who had the problem.  You may have gotten the brunt of their character defects, but it  shows that they are damaged- it would have been anyone there at the same time if it wasn’t you.  Yeah, it hurts, is maddening, and feels very personal… but for someone who is incapable of functional, healthy relationships, it’s all they can pull off in life, and that is pathetic.  I’m not saying to not feel what you feel… I’m saying it’s not about you.   I had to figure that out before I moved back to my home town to help take care of my mom.  IF I hadn’t figured that out, I’d still be living 1250 miles away (where I’d been for 17 years).  In the years I’ve been an RN (since 1985, though disabled in the last several years), I’ve seen a lot of families’ pain that really stemmed from the hurtful one not being able to give what the others needed.  There were some who were outright sociopaths, but most were situations where the damaged ones didn’t know any other ways to interact.  It was the best they could do, and/or had no clue on how they were hurting people.  Absolutely no insight about their impact on others. It was their normal.

My uncle is dead.  My cousins are having to deal with whatever ways they grieve.  My grandmother lost another child.  My surviving aunt and uncle lost a brother- another sibling.  But, I think saddest of all, the chance for reconciliation and building good memories is gone for all of them.  I’m still reeling from three very significant deaths this year in my family (on the other side), and while my relationship with this uncle was purposely estranged to not get any more of his crap, I still feel badly.  I remember him  when I was a kid, when we got together (and I’m guessing he was on his best behavior), and it was good.   His wife/my aunt (who passed away several years ago) was  a bright part of my life.  It’s hard to explain, but it’s kind of like him dying takes away more of her.

I’m rambling… just be decent to each other, and don’t let relationships erode because of ego or general apathy about how interactions can be so deeply scaring.  Reach out, and try to make things right.  Don’t be someone who others want to stay away from.  Know that at the end of the day, you didn’t do anything to hurt another person.  Especially family.  Truly be able to rest in peace whenever your time is up.

If my uncle were here, I’d say “I wish we’d had a better relationship during these last several years, but I’d never wish anything bad on you.  Nobody deserves to have a painful death, or to have to deal with cancer.  I just wish I knew what made you OK with treating people how you did.  I have a feeling I’d be more sympathetic than angry, since you and my mom came from the same family.  Regardless of anything else, you were still my uncle.” 

To my cousins, aunt, and uncle (grandma isn’t online)…. I’m SO sorry.  I’m sure his death hurts in a lot of ways.