If You're Going Through Hell

[Gwenivere]

Very funny, Kevin.   Have an aide tonight that loves Tarantino.  Shame none is on.

woke up today at 6:15pm today. Was told I took all my meds,  did PT but have no memory.  They switched a pain med so I am trying to get it changed back.  First day I had both in my system and woke up 10:30p, today on its own 6:15pm.  But I was talking and doing stuff.  Very very freaked out.  Been on the portable toilet twice. I can’t even describe how hard that is .  No catheter my more either.  
 

Definitely not going home.  No place for a nurse and I do need so much he help.  Wouldn’t be able to have Mel.   I can’t be without her with a huge reason and I have  have. A good one.  My hope is going home, her me and the birds.  Our boring schedule doesn’t sound do boring now.

going to ge settled for bed.  Hope I wake at 10am like hospital schedule.  💖💖💖

[Kieron]

Gosh, Gwen, I am sorry you are facing all this.  I wish there was something we can do from our various locations.

[kayc]

My hope for you is that you won't have to be in rehab too long and can come home where you can have Mel and the birds with you.

Stress back on with return home & Peggy's needs...I've been telling her all along she needs to hire someone before my foot surgery 9/2 and you've got it, she hasn't, wants me to take her to the doctor in Eugene by 8:30 am the following day, I'd have to leave home at 6:30 and wouldn't be home until noon if we didn't eat anything on the way.  I told her she needs to get someone else to drive her, she can't reschedule until December and it's emergent.  Everything she's put off for years is now an emergency on my part!  Meanwhile, my family is "mum's the word."  Ghosted.  Zero fun all summer, all I look forward to is Kodie and church, and now my DIL wants me to come babysit overnight in a month (missing my church).  Will do it as it's the only way I can see my grandkids, won't elaborate any more.  Seems I only hear from people if they want something!  Excepting George, I appreciate his calls to check on me.  Have been wondering how everyone on the East Coast is doing with Hurricane Henri?  I hope no one is in harm's way!!  Marty, I know you're on a hill so I'm hoping you're okay?

[MartyT]

All is well here in Florida, Kay. This storm passed us by ~ but it surely is wreaking havoc on the East Coast.

I wonder what would happen if you told your sister that you realize that she wants you to take her to the doctor on 9/3, but it will not be possible for you to do that. In other words, what would happen if you just said NO?  ❤️

 

[KarenK]

Marty is so right, Kay! You have no business driving the day after your foot surgery. Not worth chancing a second injury. You already do enough.

[Gwenivere]

 Casting my vote in on no driving and you’ve done so much.  
 

today was the 3rd day I woke up in the evening with no memory of the day.  My nurse said I was active pretty much all day.  I asked what I said, but she couldn’t remember.  I remember eating lunch, bathroom breaks, but not anything else til she gave me my 6pm meds.  Theories abound about such major surgery reactions which I’ll google after this. I’m getting a little concerned about rehab as I know they are picky about you being further along as pain control and more mobility.  Plus the 2 that  are willing to take me could run out of room which happened where I was last time, the devil you thing.  It’s been 8 days and I’m going to contact the surgeon and this time this. 
 

toI did have an intense morning of pain and procedures that we like

torture.  Didn’t think the pain would stop after 2 hours.  I really wanted this to end for good.  Fortunately all the compassionate staff kept reminding me this was no common and in about the worse place.

Kieron, keep on the hunt for that

🧚‍♀️

 

 

 

you know and all that.

[kayc]

18 hours ago, MartyT said:

what would happen if you just said NO?  ❤️

I already did.  I've been telling her all along she needs to hire someone BEFORE then!  She'd jolly well better because it's extremely important for her to be there.  If she goes totally blind, I don't see how she can survive at home much longer.  She WILL fall and it will be hell for her.  Many of the hospitals are so full they make you wait a very long time in the ambulance before they can even take you in!  I have decided not to cook for her anymore either, I did the day she came back from evacuation, also bought her takeout food, but that was because everything in her refrigerator needed thrown out.  But she needs to make arrangements and do SOMETHING for herself.  She's the most irresponsible person I know.

8 hours ago, Gwenivere said:

Plus the 2 that  are willing to take me could run out of room

When my sister was in the hospital and later in rehab I remember telling her to do everything they said as best as she could so they'd let her go home.  They seem to hold the power/key to us moving forward.  It's hard to push through the pain, I've heard its excruciating.  Deep breaths...oh yeah, even that hurts.  Damn.  Look forward to being home with Mel...keep that ever before you.  We are all pulling for you.  Somehow I feel everything I've done for my sister has been a waste of effort, wish I could have spent it on something constructive...like you.  I hate that you're so on your own.  Me too, I realize this could be me in a few.

[kayc]

Update, my sister found someone to take her to the eye doctor 9/3, however she's my age, according to my sister doesn't know her way around Eugene or have a GPS, etc.  I don't see how this is going to help.  Peggy wants to leave an hour early so they can find the place.  I asked her if they're just going to drive around aimlessly for an hour when they don't know where they're going?  I told her where it is, it's complicated to explain but I know exactly where it's located.  Mapquest and Google flunk on directions.  She wants me to drive her there when I take her to the denturist tomorrow.  It will cost me an extra hour I can ill afford as I have to leave Kodie in the house for hours as it is, will she remember a week later?  Doubtful.  I wish I could get her phone number and talk to the lady myself.  She may not be aware of Peggy's condition.  In the end, I've done all I can do, I have to let go of the outcome.  It's driving me nuts though.

[MartyT]

4 minutes ago, kayc said:

In the end, I've done all I can do, I have to let go of the outcome.

Yes, you have, and yes you do! ❤️

[kayc]

I know exactly where they are now (I called them because she told me her appt was at 8:30 and my sister 5:30...it's 8:45).  I got her driver's name/number and will call her with directions.  I emailed siblings with updates.

[Gwenivere]

Transfer day.  Of course that became a problem.  Transport had no oxygen and hospital insisted.  So got to wait 2 extra hours.  Got to be time consuming getting checked in,

yesterday was the morning from hell.  Bladder pain the required 2 sonograms (battery dying in between) and a catheter, wide awake.  2 hours of pain I didn’t know a human could endure.  Then later in the evening urgent urinary trips every hour. Nurse woke me at 10am on the dot, put me in the horrid chair and PT showed up for a long walk.  It was my first day there I was unfriendly.   This has changed me into someone I do not being.

lt's 1030pm at this new place and so far the oxygen machine has crapped out two times, no walker, had to wait almost half a hour to use the bathroom and NOW find out because I got here late, my panic or pain meds in are in the system but the discharge doctor wrote my anxiety and pain meds at the wrong times.  So now I have to hope clonopin alone works til noon and the doctor here can straighten out.  Trying to find out how messed up the pain meds are.  They were PRN at the hospital.  Here, wrong again.

My back is so screwed up from all the jostling and the bed has no rails to help move.  oh, and yes, being a bit annoyed and saying it differently would be too profane.

😡😰

[KarenK]

Gwen, so sorry they have put you in what sounds like the rehab from hell. I know rehab was the last place you wanted to be, but it's pretty much a given with the big surgery you had. It sounds very poorly equipped and disorganized. I would think bed rails would be standard in a rehab place. Sure hope this all gets straightened out quickly, especially the meds. Do a lot of screaming if necessary!!!

[Widow2015]

Oh Gwen, so sorry to read what you are going through in recovery.  Each day sounds so frustrating for you.  I wish someone could be there to speak for you and be your advocate when you needed care or needed someone to speak up for a nurse.  You are so strong to face this recovery alone.  I know some day you will look back and realize how strong you are.  Please keep remembering you are in my thoughts.  Hugs and hoping for a much better day tomorrow.  Dee

 

[kayc]

Gwen, I am so sorry!  I hope they get everything straightened out asap today so you can be halfway comfortable again.  I hope this is not a sampling of what you can expect from them.

My sister called me at 2:40 am and woke me out of a sound sleep (she thought it was 2 pm) , adrenaline going, BP and BS still up!  I never got back to sleep.  I have to drive her to Eugene to the denturist this afternoon.  Tonight I think I'll take my phone off the hook (she has a medic alert if anything happens).  I talked at length with the person she is supposed to be hiring for care-giving, filled her in on her dementia, stubbornness, etc. glad she didn't run!  Told Peggy to look out the window and see how dark it is.  

Sometimes I feel like I'm living in a sci-fi movie.  Our world/lives are nuts.

[Margm]

I've written a lot of times but I reread and delete.  All these years I've never been alone.  My granddaughter is out of her room, living with her mom and my son and flourishing.  I have written so many times I don't remember what I've said, but I know you don't want to give Cymbalta to a 79-year-old woman with worsening essential tremor and tell her the anxiety will go away with the antidepressant. #1, I probably spent more than 20 years on various antidepressants, Prozac the most.  I had to sign my name at the bank, they are used to my tremor, they are not used to the tremor on Cymbalta.  I know the teller was thinking "just put an X and initial it" because I could not write I was shaking so bad.  One pill, long release.  Did not take another.  This is to take the place of anxiety meds.  I know antidepressants and after awhile, the symptoms ease up.  Right now I am looking at "quality, not quantity."

And folks, my granddaughter was in her room 95% of the time, but I knew she was here.  My worse fear was her finding me dead.  Now my worse fear is unrelenting fear.  All my friends live alone.  One lives with the lake lapping at her garage.  She has to climb stairs to get to the living quarters.  She has lost two husbands and has illness.  She lives alone.  Y'all live alone.  I never have.  "Poor me."  

And the sister situation, nothing is asked of me.  She cannot keep working though.  Have to find adequate government housing.  She probably has 1000 books or more and she is so damn sweet.  We will find an adequate housing, probably close to me.  She is on oxygen so much.  She loves to cook.  I won't cook.  (No, that is not an answer.)  We will find a nice place.  She loves being alone.  That is why she never married.  Teaching is getting too much for her though.  Where there is a will there is a way.  She does not ask anything of me.  

I'm through whining. (They won't let me drink wine).

[Gwenivere]

This shows just how differently hell can strike for each of us. Kay,  I thought you weren’t taking your sister to this appointment.  I don’t know what goes on people with dementias minds.  I’m so dependent on being aware of reality.  Calling at 2am thinking it’s pm would be very unsettling.  I don’t know how you keep going with so much lack of sleep.

I’ve spent all day arguing meds, making so many calls I’ve lost count.  Have one more to do and hoping that’s it.  Still in withdrawal, but supposedly things on track by morning.  I’ve never talked to so many people and had assessments.  Challenging when your loopy and barely can keep it together.  They tell me all is set for the rest of tonight.  Then it will be trying to sleep again.  PT wants to get going on walking again.  I know I have to do this stuff, but I just can’t find a good attitude. Had some really nice people assess me today.  Caught a good look at myself in the mirror today and it was shocking I was so disheveled.  
 

Marg, if I would have known how antidepressants would affect me,  I wouldn’t have touched them.  I got a good taste of tremors today in withdrawal from the med mess.  Taking a cognitive test was a challenge.  I’ve been up and down so many times.  I know I aggravated things.  At least I kept being reminded how extensive this surgery was.  I’m so impatient that walking 100 feet is a 'great' accomplishment.

Hope everyone has a reasonable day.  All I can think of is Steve and how this has taken back years of processed grief.  I know physical healing takes motivation, even anger.  I’m running on empty.

 

[kayc]

12 hours ago, Gwenivere said:

I thought you weren’t taking your sister to this appointment.

No this was her denturist, it is her eye appts I want her to start having a driver for, next one is day after my foot surgery (which is 9/2).

I keep holding my breath on what the house painting is going to cost, he didn't show up yesterday or call and stuff is all in disarray outside, there's stuff he needs to finish and touched up, he painted my downspouts I told him not to, I only wanted the brown one in the middle of the house (front) painted as it doesn't match, they don't have charcoal grey anymore, now that he painted these light grey I'm afraid they'll peel and look awful.   But no use saying anything now, it's done, he's like that, doesn't remember what I told him.  He needs another gallon and I could have gotten one yesterday but he didn't call me as to which one, light or dark and I don't see the numbers around here of the light one, I sure hope he kept an empty one!  I need a quart for touch up anyway.

I took my sister to the denturist, she wanted to eat lunch out afterwards, the hwy was closed so we had to go way out of the way to get to Eugene.  Kodie was in the house seven hours, and he  whined and whined last night, I took my sister and her stuff home, came home & put groceries away and took Kodie to play with Jazzy between 6:00 and 7:30, still he whined all night, I didn't get to eat until 9 last night, so my BS was high this morning, then Kodie woke me up at 4:30 am, I was sound asleep and needed more!  I got to bed late last night.  Just got back from walking him and have yet to check my diabetic & grief groups, Debbie will be out for a few days and George is working so I need to be there, haven't seen Evans on much lately (other moderator).  Tell you how bad my sister is, she decided at the last minute not to go in the grocery store with me, so I opened the car windows (don't trust her with the key), she said she just wanted them cracked, so closed all but about 7" on all four windows.  Everyone in the county was getting groceries, it took me an HOUR!  Came out and it was a lot warmer than when I went in.  She looked flushed, I asked her why she didn't open the door and she said she hadn't thought about it!  OMG, she would die of a heat stroke rather than think to open the door?!  (beat head on wall again).

I don't plan on going anywhere except Jazzy's today. 

13 hours ago, Gwenivere said:

This shows just how differently hell can strike for each of us. Kay,

That's a for sure!  It seems life can think of a multitude of ways to get at us!  I'm sorry you're having to fight for survival when they should be taking CARE of you!  

[Gwenivere]

I don’t envy you at all on the painting thing.  I loved painting and did our house several times.....on the inside.  Whether we changed colors or it was to have clean walls it was so rewarding.  Outside? Nope.  Not at all interested.   
 

Long day here.  Well, beyond being stuck in the same place, dependent, not adjusting to eating times and really lonely.  Finally got a shower!  Hurt like hell but I feel somewhat human again.  Then it was a long PT session.  The catch is, as anyone who’s had a huge surgery knows, is all that is helping you (hopefully) down the line feels like it’s an impossible mission.  Naturally I feel even worse for the day. Like I did damage.  Hard to stay focused this will turn out well.  Hard to fight off that I did the wrong thing.  Even tho I know I couldn’t go on much longer as I was.  It looks like I will have to give up my counseling this week.  Another irony as boy!  I need to talk to go to my safe places.  
 

The PT therapist is very spiritual and used imagery and positive eastern thinking like energies and where our bodies carry the weight of our life struggles.  It was interesting that when my back began this was when the shock of Steve died wore off at about 2 years.  It progressed, but when I lost Ally and Foss last year it went into overdrive.  It was startling looking back on when I just started declining too rapidly from all I read on the conditions (there are 2).  Even the doc thought it progressed fast.

Now I have a house mystery.  My anniversary earrings from Steve are not where I left them.  I thought it may have been my memory, but one woman remembers seeing them the other day but not today.  Checked with my other house sitter and she never saw them at all.  That leaves my housekeeper and I’m hoping maybe she moved them. If she didn’t I'm afraid someone figured out where the key is and has been in there.  Haven’t used the alarm in forever because Mel was always there and it was obvious it was occupied.  If my HK didn’t move them I’m worried about my purse and medications.  Bank won’t show new charges til Tuesday on my credit card.  Gawd, this is so hard without Steve where there would be no worry about anything.  Trying not to get all wound up.  I’m just so tired of possible problems while I try and get thru this.  I get moments that I feel things will work well and wham!  Another snag and this would be huge.  I don’t know how I would possibly change my billing at so many places being in here.  I’m no angel, but if karma exists, I can’t believe the couple bad choices I’ve made recently warrant this.  😢😢😢

 

[kayc]

Gwen, not everything that happens bad in our lives means it's something we must have done wrong, banish that thinking!  How do you know it's missing if you're not there?  Do you have a video of the inside of your house?  I am so sorry they seem missing and really hope they show up.  Have you spoken to your housekeeper yet?  Is it possible you could have her go look for them?  Can you call your bank from where you are and ask them to show you if there's new charges pending?  If anything shows up they can put a stop and cover it for you.  At least mine would.

Slow down, this may be your anxiety getting ahead of you.  I was frantic after the evacuation when I thought George's wedding band was missing, but I found it, it wasn't where I'd thought I'd packed it.  Yes, everything is more of an uphill struggle without Steve here to help.  For one thing, we wouldn't place as high value on things they gave us because we'd still have THEM!  Those things are all we have left, along with our memories.

I can't imagine you making any choices so horrible as to cause something bad to happen, you're a good person at heart.

If it's any consolation, my sister's back KILLED her for the year after she fell and crushed several vertebrae, her doctor did nothing, she couldn't move without it hurting tremendously!  After the surgery she had pain until it gradually healed, a period of about a year, but she tends to exaggerate so it's hard knowing how much, I know it was a lot at first, and she tends to not notice when something is improving, but we notice the little differences/changes in her and what she can do so we noticed a gradual improvement over that next year until she was pain free.  I know her condition was different than yours so your situations may not be comparable, but I do look for your pain to gradually improve/subside, although how long that will take I don't know.  It always feels longer to the person who is in it!  PT, to me, seems a whole other hell...I could never be a PT.  I've known too many, seem like drill sergeants who relish in causing distress, ha!  I know they're there to help, but it doesn't FEEL that way at the time!  Can't wait for you to be able to come home with Mel.

And I'm glad you got your shower!!

[Widow2015]

12 hours ago, Gwenivere said:

 Trying not to get all wound up.  I’m just so tired of possible problems while I try and get thru this.  I get moments that I feel things will work well and wham!  Another snag and this would be huge.  

Gwen:  I understand the fear of losing your special earrings.  But, I agree with kayc,  there could not be any choices you have made in your past so awful to create your suffering.  I do believe it is just life that throws challenges at us.  The fact that you made the decision to face this surgery and make the detailed plans for your animals, home and transportation to the hospital indicates your amazing abilities.  We here have wished you had someone to physically drop in to check on you, (don't even know if that is possible with Covid rearing it's ugly head now??).  Hoping you will soon remember where the earrings are.........in a safe,  special place.

In all these months of moving to my new home, packing boxes, unpacking boxes I am amazed as I unpack to find something I haven't a clue I packed.  I intentionally insisted on doing my own packing and unpacking of boxes so I would not be overwhelmed, but unfortunately I am right where I had hoped not to be.  But, I am moved out of the house and the house is on the market as of Saturday.  Thursday, as I drove away realizing I would never sleep there again, I looked straight ahead in hopes of not making eye contact with any neighbors.  The tears were streaming down my face.  Before the house sale closes, my son and I will have a few more items to move out.  My plan is to say goodbye at that time, if I can.   Keeping good thoughts for you.  Hugs, Dee     

[MartyT]

8 hours ago, Widow2015 said:

Before the house sale closes, my son and I will have a few more items to move out.  My plan is to say goodbye at that time, if I can.

I thought of you when I read this today, dear Dee: Moving House? 8 Ways to Say Goodbye ❤️

[Widow2015]

Marty:  Thank you for sharing the article on Ways to Say Goodbye to a home.  Since my move has been over months due to many issues, I was happy to read I had done some of the suggestions.  Early on I had dug up some peonies that belonged to my beloved Father in Law and are now planted at the entry of my little new home as well along with a variety of lawn ornaments.  So many warm memories shared there will go with me.  Thank you for thinking of me.  😍 Dee  

 

[Gwenivere]

5 hours ago, kayc said:

Slow down, this may be your anxiety getting ahead of you. 

Thank you for the well needed pep talk.  I just want to throw in the towel at times because of the relentless agony.  The doctors didn’t fully prepare me and they may not known how bad it actually was from the scans.  The 'doctor' here came by and barely did anything.  Looked at my feet thru the sheets!  I need to let my docs know what’s going on.  The big wig ARNP is still not happy about the fix and now I’m in a red tape loop about my meds again.  My shrink wants to talk to me before them but so hard to connect with.  All they want to verify are my total daily RX’s.  I hope he doesn’t have a problem with what we’ve been doing and he’s prescribed.  It’s definitely the not knowing what is going on and it’s interfering with the brief times I’m as close to comfortable as I can get.  

5 hours ago, kayc said:

It always feels longer to the person who is in it!  PT, to me, seems a whole other hell...

It’s hard to take pleasure that I walked assisted 80 feet.  Or stood 3 minutes having to keep leaning on things.  PT and OT make a big deal out of it to make you feel good, but it’s so sad to me.  That I have to learn all these new ways to do what I’ve done for my whole life and will probably be this way in many ways from now on is hard to accept.  I’m not getting the warm fuzzies about living as I was.  They say months to know.  
 

11 hours ago, Widow2015 said:

Thursday, as I drove away realizing I would never sleep there again, I looked straight ahead in hopes of not making eye contact with any neighbors.  The tears were streaming down my face.

oh Donna, my heart really goes out to you.  I can feel the pain in your words.  We’ve given up so much.  We had no idea about this part of being grown up.  All the memories of your home, good and bad.  Hitting you like a hurricane.  Smart thinking you took some plants and ornaments.  I know there are special plants I would miss as they would be too big to move.  
 

You are phenomenally strong to be doing what you are doing.  I know you endured so much emotional choices and there are losses, I know Maddie is in there.   Now new everything.  I hope you see all you’ve done that many might find impossible.  So, you, lady, deserve so many kudos!!!  💖🌺🌸🌷

[KarenK]

Gwen, don't be too hard on yourself. You're probably right on track with healing and progress. No doubt it will take a very long time to begin to get back to a semblance of normal. I hope they straighten out your meds and you can get in touch with your own doctor soon.

Dee, glad you are finished with the moving and can maybe get a little rest. Your new place is surely beautiful. I felt a great sadness when I left our cabin for the last time. I just would not feel that way about this place I've lived in for over 50 years.

I got an unexpected call today from one of Ron's aunts who lives in Va. Guess she just wanted to catch up on family news. Not sure how she got our number. I told her he passed away 8 years ago. He told me specifically not to notify any family when he died so I followed his wishes. She told me she had recently spoken to his sister in New York which surprised me. My BIL that lives nearby told me that she was dead. All in all, Ron was part of a strange(to me) bunch of estranged people. Wonder if I'll get a call from his sister next?

[kayc]

21 hours ago, Widow2015 said:

The fact that you made the decision to face this surgery and make the detailed plans for your animals, home and transportation to the hospital indicates your amazing abilities.

ABSOLUTELY, I agree!  Such a vast difference between you and my sister, you who have done everything you could to help yourself and your situation, and you have done NOTHING to bring any of this on yourself!  You are an amazing person and deserve so much better than you've been dealing with.

8 hours ago, Gwenivere said:

The doctors didn’t fully prepare me

Do they ever?  I find them clueless as to what it is to actually experience it, they learn the book learning of it, we learn the hard earned knocks.  

Karen, well she couldn't have been too close if she didn't call for eight years!  I wouldn't worry about his family.  Same with George's.  16 years and I never hear from them, I see his daughter on FB and got a notice that his granddaughter graduated high school this year...first time I've heard from her.

Does anyone know how Marg is fairing with the hurricane Ida?  Not looking good in LA, I'm glad my little sister doesn't live in New Orleans any more.

As to my sister Peggy, she paid her bills without me, pulling back since I can't drive her to the doctor after my surgery, that says a lot to me.  A part of me feels she's wanting control, another part says it's about time she does something for herself, yet I know it's not long now, she can't, her brain is half gone already.