Small Talk: The Prayer Closet

[GeeGolly]

Warm thoughts for you HFC.

[Barb23]

Oh Happy, so sorry to hear. You have been on my mind all day. May your memories give you comfort. As others have said, thank you for sharing her journey with us.

[Happyfatchick]

Oh thanks so much for all the support, you guys are wonderful. People I've never even seen face to face gathering around for group hugs. Amazing. We're all very tired tonight, and (as you know) the commune.... So a little snippy with each other. My husband (who is a great guy generally but really short on support) said to me at 2:30 in the morning "I'll be there in a little but". And shows up an hour and a half later. (You da man!!!). So I questioned him in my best whisper voice, in what I believed to be a private conversation with my spouse "what were you DOING for 1 1/2 hours? We live 5 minutes from here on a heavy traffic day!" My cousin says from across the room "but he's here now, and that's all that matters". And gives me THE LOOK with his head tilted down, as if I'm FOUR and need correcting. WTH??? Was I ASKING for a consensus??? Was I WRONG to ask the question? Helloooooo, my mother just died!!!!!

So now there's a joint funeral on Thursday...

And my grandson (one of the Nica kids) ran away today because my younger son hurt his feelings. He didn't run far, but my youngest is being immature, and the grand is feeling left out because he's been removed from our normal life on the compound. Oy. Because we're not already exhausted enough and there needs to be drama. Blerg.

Edited March 15, 2016 by Happyfatchick

[pinkie]

HFC - I am so sorry to read about the loss of your Mama. Please reach out if you need "us" in even the smallest way...((hug))

[Obsidian]

My condolences, too, Happyfatchick. Virtual hugs to you.

[Micks Picks]

HFC may the peace of the universe envelope you.  Just peace and calmness.  You need no one else for that.  

 

A pat on the back or a kiss on the cheek are nothing.  There is a void and emptiness that can not be replaced.  Do know I care for you so much.  But you really need only the calmness and peace that only you can give yourself.  I am so sorry mom is gone.

[pippity j]

HFC.I was so sorry to check in here today and read this.All I can say is you did good and I bet your Mama is so very proud of the daughter she raised.May God bless you and yours.

[zoomama]

HFC.I was so sorry to check in here today and read this.All I can say is you did good and I bet your Mama is so very proud of the daughter she raised.May God bless you and yours.

 

 

exactly what she said.  you did good. and years from now, you will realize it. peace and sleep wished for you, as the exhaustion takes a while to get over.

[Tabbygirl521]

HFC, my heart is with you. My sister and I lost our mom last summer and the last days, and days following, were so hard. Know that your mom knew, and knows that you were there for her. She knows.

I think you may find that before long, the happy memories of your healthy and happy mom will overwrite these recent memories. When I conjure up mental pictures of my parents, they are in good health and in their prime. I have heard similar stories many times. Your brain helps you cope. This helps you bear the pain of loss, because it restores some perspective, I think, that the much greater part of life is NOT about dying.

I will be thinking of you and yours. Huge hugs to you.

Edited March 15, 2016 by Tabbygirl521

[Honeycocoa]

HFC, Very sorry for your loss. Thank you for sharing your journey with us. May her memory be a blessing. Take good care, be gentle with yourself.

[travel17]

HFC, my thoughts and prayers are with you and your family. From your description, your family has a new fierce guardian angel until you met again.

[CherryMalotte]

I'm very sorry for your loss HFC - please give yourself a big hug from me.

[NikSac]

HFC I am so sorry. You did your very best and she knows it. Thank you for sharing such a hard time with us. You may not know it but you've helped others too. I hope the support here has been a help to you.

Hugs to you. Be gentle with yourself.

[Happyfatchick]

https://www.dropbox.com/s/3s9f5bvkdrvf7yz/2016-03-14%2003.15.24.jpg?dl=0

The story behind the horrible - really no good- awful picture.

I've mentioned before that my mother was hilarious. She was honestly one of the most genuinely funny people I've ever known. If you say her name to a friend, they immediately pop out a big grin. She was THAT GIRL. And believe it or not, I am a big believer in spirits. I know in my bones I've been visited by my Daddy since he left here.

So the night she died, the sitter and I grieved HARD for a few minutes and then I said "what the ever loving HELL???" I thought I was going to hold mama and comfort her, you know, ease her soul along. And she just QUIT. Not holding my hand, not tearfully leaving. She.Just.Quit. I mean, GO MAMA!!! It was just totally not what I "thought". So within 3 minutes of her dying, the sitter and I were high fiving and laughing about how she tricked us all. I was so RELIEVED she went so peacefully. We loved on her for a few minutes, and then started the calls to set the wheels in motion. Pretty soon everyone was there. We're telling the story over and over and reliving the moment. My oldest son, my daughter and I sat down on her normal bed (Mama in the hospital bed). We're just talking about how she left and sort of taking it in...dumbfounded... and the bed COLLAPSED!!! I swear, it was like Mama had kicked the frame out. That thing just went BANG!!! And we were suddenly a foot lower.

There was this stunned woof of silence, and then the whole entire room ERRUPTED in laughter. My DIL laughed till she cried. Every one of us fell out, not one crier in the whole dang room. I'm TELLING you, Mama was saying "lighten up!!!"

Shortly after, my SIL and I were digging thru the closet, looking for one particular dress. My mother did mission work at a children's home (for neglected and/or abused children) that had a thrift store attached for 20 years. And every time she went, she would buy a load of crap that she didn't need and would never use. On the top shelf of her closet, she had 20 purses and 50 fugly hats. The thing is: Mama carried ONE purse for the last 20 years and N.E.V.E.R. wore hats. HATED hats. Big hats, knitted hats, hats with crochet flowers on the brim - you cannot even fathom the ugliness in that closet. So we start putting hats on everybody, gathered together for a group shot... and there you go. It was ridiculous. I'm pretty sure the hospice worker thought we had some weed in that house. We loved her so VERY much and have worked so VERY hard for her, and it was just like she was IN THAT ROOM, making us laugh.

And that's the story of the horrible- really no good- awful picture.

ETA: mama thought "fugly" was the greatest word ever invented.

Edited March 16, 2016 by Happyfatchick

[Tabbygirl521]

HFC, that is FANTASTIC!! I love your mom! You and yours inherited some great stuff from her - character and humor in abundance. LOVE the visual of the hat picture!!!

[Readalot]

HFC. What a wonderful celebration of her life!

[Love2dance]

HAPPYFATCHICK, what an inspirational story, an affirmation of your mom's spirit that you all share.

Once again I am amazed by you. Everything you are going through, and yet you have taken time to make us all feel included in your circle with details of your emotional day. I want to comfort you and make you feel better. But instead your post has been the highlight of MY day. Warm, fuzzy hugs to you and your hat-wearing family.

[Barb23]

HAPPYFATCHICK, what an inspirational story, an affirmation of your mom's spirit that you all share.

Once again I am amazed by you. Everything you are going through, and yet you have taken time to make us all feel included in your circle with details of your emotional day. I want to comfort you and make you feel better. But instead your post has been the highlight of MY day. Warm, fuzzy hugs to you and your hat-wearing family.

Ditto.

[Westiepeach]

Happy ~ which one are you in that awesome picture? I just want a face connected to the friend I am cyber-hugging!

[Happyfatchick]

Happy ~ which one are you in that awesome picture? I just want a face connected to the friend I am cyber-hugging!

. Oh, I'm so glad you asked, Westie. I wanted to label it before but didn't want to keep overloading. Keep in mind, I really TRULY promise I have better looking days than this one. This was not an hour after she passed.

Back row: my brother Dale, my ex-husband Glynn, my oldest son (my Sunshine) Wade, Ex's wife Beverly

Second row: me, DIL Deena, youngest son Brett, Willie the wonder-sitter (who has her angel wings tucked in for this pic)

Front row: SIL Pam (who has always been a dear friend, and who helped us like you can't BELIEVE thru all of this), my beautiful daughter Rachel (beautiful but psychotic - she's the Nicaragua missionary)

Thanks again for asking. And yes, those really are my ex and his wife. They live on the compound, and are family. They haven't left my side through this whole journey. In fact, my ex's wife coordinated the lunch following the funeral tomorrow. It's a little odd for other people. For us, it's our way of life.

p.s. I totally know that I cheated posting a pic on here, but maybe this one time, it's ok

Also: if you look at the faces, we sure do have some family resemblance going on. My oldest child is ME, only taller with facial hair. My brother and I look similar but it looks better on a boy. My youngest is a mix of me, his brother and his dad. My daughter is her FATHER with boobs. She's darker with brown eyes. You'd never in a million years guess she could be mine. Second on back row is her father.

Edited March 16, 2016 by Happyfatchick

[pippity j]

HFC  loved the story.The picture is great.I get the statement it makes.Some of us in my family are the unconventional types too.

 

I remember when my mom and I overheard a conversation in a store.Long story short this person was using the word invalid in the wrong way.Talking about this person being an invalid but calling them the word meaning not valid.We laughed for ages.What did I get for Christmas that year?A T shirt saying in capital letters invalid must be Frans kid.And yes I wore that thing til it was unwearable.Did I mention I was in my 30s?

 

She passed away unexpectedly several years ago.I flew back and a brother drove me to the small town and I stayed in her apartment.She didn't want a service or to be put on display-her words,so we honoured that.We had a get together at the funeral home in town because the owner was a friend of the family and she wanted to donate the use of a nice room.We accepted the gesture and we honestly didn't know where else our family would fit.We had her Irish music tapes playing a little on the loud side like she always did and just laughed and caught up with each other.Of course we sang the songs that you just have to sing.Then we told some stories and called it a day.Two of my brothers and I had to clear out her apartment.I haven't got a clue who started it but we ended up auctioning off all her belongings.We each wrote a number on these empty cue cards we found in her recipe box and one of my brothers was the Auctioneer.For the most part whoever held their card up was respected as the one that valued the item the most and after the going once going twice ect.required ending a sticky note with the persons name went on it.For fun once in awhile someone else would hold their number up after one of us "bid" on something and we would kill ourselves laughing while outbidding each other.Of course the first "bidder" won.Occaisionally we "bought"something for each other when we knew how much it meant to that one.We also "bought" for other family members.The only thing that we all wanted was that darned Irish music that we all grew up with.My brother got it and agreed to make copies for all.We felt so close to her.We could almost hear her yelling stop it you fools.Not because she would think it disrespectful but because she would be laughing so hard the tears would be rolling.

 

Gosh thank you HFC for the little trip down memory lane.I can feel her here with me.

[Catlyn]

Oh, Happy, I'm sorry you've lost her, but I think she showed that she's happy and fully alert now. 

 

It's hard, your head says, she's gone, she's not suffering. Your heart is saying in a three-year-old's voice, "Mommy's gone! Now what do I do? Mommy!"  I'm glad you have memories to keep you company and your mother alive in your heart. Obviously, she'll keep an eye out for you!  Cyber hugs to you.

[travel17]

When my grandfather passed, his mouth curved into  sweetest smile and  he just  exhaled.     I really, really, REALLY miss him, but oh the peace and joy I felt in his spirit.  Sending my cyber sister love  :).

[zoomama]

HFC said:  p.s. I totally know that I cheated posting a pic on here, but maybe this one time, it's ok

 

is that really a no-no?

[frenchtoast]

Generally, we allow images to be posted. On The Site That Shall Not Be Named, it was verboten.

 

Of course there are rules within that--no posting images of really private information--addresses, locations, flight plans. That sort of stuff where we'd like to have some semblance of keeping kids and adults somewhat safe. Is it public? Yes. Do we need to share it? No.

 

Which leads me to--we can of course share pictures of ourselves here. I would remind everyone, though, that once it's on the internet it can not be brought back. Not that I see anyone here posting drunken naked pictures. In all seriousness, many posters cherish the anonymity of the internet and don't wish to share personal information and that is perfectly fine. Share only what you're comfortable with. 

 

You'll need to use an image hosting site (like imgur) and then paste the link provided from the BBCode. If you'd like better instructions, I can try to explain it/provide illustrations via PM, but I'll admit I'm not good at it. When the new version of the forums come online, you won't need to use a separate site, you'll be able to copy and paste directly.

[Love2dance]

HAPPYFATCHICK, thinking about you today, sending you warm hugs as you and your family attend your mom's funeral.

[Happyfatchick]

I have just returned home from the funeral and the luncheon afterwards. It was the most beautiful goodbye I've maybe ever attended in my life. The preacher knew her well (has personally been pranked by her), and that makes all the difference to me.

My hubs and I lost an employee in a car accident once. His name was Jalwin. Unusual: yes. The preacher referred to him all the way through the entire service as "Jarwin". Another time, the deceased was named Malzie. Also unusual, I know. The preacher called her Malvie the whole time. Oh dear!

So anyway, there was laughter, imitations of her, stories about her, and many many wonderful tributes. For example, Mama was on the Pulpit Committee (that's what we call them in a baptist church, the committee looking to replace a pastor for a church) for the preacher who did her funeral. He has a doctorate and is a brilliant speaker. Mama and I had gone to florida with my two oldest children, who were very young then. Part of our trip included a trip to Marianna to hear this man. He was subsequently brought to their church and he served many years. Mama loved him like a son. He talked about that, how she went to Marianna and recommended him, and brought him on board. He said as near as he can figure, 28 separate ministries were started as a result of him being the pastor of that church. 28 different people went into the ministry from the original one. The man who did the music (with his wife) today also was brought into the church because of my mom. He served that church for maybe 15 years. So they were both able to talk about Mama on a personal level. When he was interviewed, he wore loud argyle socks. Mama said with a straight face that she couldn't imagine a music minister wearing those ugly socks - that it would be distracting. Of course, he came to the church, and he later pointed out to her that he had ditched loud socks because of what she said. And she replied "what are you talking about???"

Another sweet thing was this: when Daddy died, his Amish nieces and nephews (and his brother/wife) came down in droves. They have to hire drivers, and they packed one whole side of the church. We figured we'd have a few, I personally thought maybe 10. Nope. They filled up the whole side again. I was so TOUCHED by that, really. They LOVED my Mama, they all had stories, and most of those stories were funny too. Plus, it's just sort of amazing to see the looks on people's faces when the Amish start filing in. OO (!!!) Very touching that they came. Mama just sort of put her thumbprint on every part of her life whether she meant to or not. I sooooo hope that people in heaven can watch their own funerals and see the impact they made.

Thank you so much for allowing me to talk about this so much lately. Maybe we can get to a better subject now.

[crazycatlady58]

Hfc, I think hearing about love is always a good thing, and whenever you talk about your mom and dad I hear love.

[Happyfatchick]

The most worthless post. In the history of ever.

Bad bad bad day yesterday. But I'm feeling a little stronger today. Gonna be ok. Looking for my new normal. Who am I without my sick Mama and/or Daddy stuck to my hip like a toddler???

And who are these millions of people try-la-la--Ing through life as if the world hasn't CHANGED???

Edited March 20, 2016 by Happyfatchick

[Love2dance]

The most worthless post. In the history of ever.

Bad bad bad day yesterday. But I'm feeling a little stronger today. Gonna be ok. Looking for my new normal. Who am I without my sick Mama and/or Daddy stuck to my hip like a toddler???

And who are these millions of people try-la-la--Ing through life as if the world hasn't CHANGED???

So sorry, HFC. We know this has to be very hard for you. It does seem so weird that the world keeps turning when your world has been turned upside down. But hopefully, day by day you will be able to restart your normal, unbelievably busy life again,and itwill feel right. Thinking about you and sending hugs.

[Happyfatchick]

Ok, up for story telling today.

1)

My mom, several years ago, had knee replacement surgery. She was sliding, but not a complete dementia bird at the time. So she's in the OR prep cubicle, getting ready. Suddenly Daddy grasps my arm and says, "I'm not feeling so great". They slap a blood ox thing on him, his heart is racing, he's gasping...they think he's having a heart attack right here, right now. Get him on a stretcher and they take him to ER, WHICH IS (of course) on the OPPOSITE side of a big hospital. And off they run. Do I stay or do I go??? There are several family members in there, but they don't want to leave Mama, who is in the twilight zone on meds. So I run off behind the stretcher. We land in the ER, Daddy grabs my hand and says "go check on Mama". [ I have to stay, the brothers have Mama.] NO!!!! I want YOU to check on her. So I'm off running. Skid into the OR prep, Mama says, "what about Daddy?" [He's FINE, Mama. They're checking him out right now. I think he fine.]. NO!!!!! I want you to go see about Daddy!!! [but...he sent me to you. He thinks you need me worse right now.]. NO!!!!! You go see about Daddy!!! [sigh]. So I trot back to the ER.... and I swear my whole day went like that until they released him (anxiety attack).

2)

She comes thru the surgery just fine, but they gave her morphine. Maybe it was the effects of early stage dementia WITH morphine, or maybe she just turned into an alien with morphine, I don't know. Honestly, being in the hospital at night just turned her dementia into a creature with a life of its own. She was absolutely UNBEARABLE in the hospital at night. NOBODY could stand to be there: therefore, it became my standard job every time to stay with Mama at night. Always, her whole life after I got old enough to stay, it was my job to stay with her at night. But. That night, because the knee thing was a big deal, Daddy insisted on staying. A team of heard working mules wasn't budging him, he was STAYING. I finally said, "all right, I'll go home and shower, get some sleep and be back in the morning if you're sure". I'm sure. The next morning at 5:30, the phone is ringing, and my Daddy spits through his clenched teeth "are you on your way??? You better be on your way". What's wrong Daddy? Bad night? Clenched teeth again, "you get your butt up here N.O.W." So I fly up to the hospital, and I promise you, it's the most priceless visual I've ever had in my life: my Daddy is STANDING at her door with his jacket and hat on, watching down the hall for me. In his hand, he has clutched a little brown sack with his snacks and his own medicines in it. He looked like a little boy watching for the bus. When I rounded the corner, he took off and didn't even look back. (And of course, he happily agreed to give me night duty that night).

3)

Daddy died on the 5th floor of Piedmont hospital in Atlanta. (we had tried for over a month to figure out what was WRONG him him, he was falling apart in front of our eyes). We took him in on a Wednesday after FINALLY the right doc paid attention. He died on Sunday. It was horrific, he was suffering, and it ripped my heart out. And of course, I inherited my mother immediately. Went from one to the other, no kidding. Literally. About a month after he died, we had an issue with her diabetes that sent us to the hospital. Same hospital. She was joking and laughing all day about wanting to get out, wanting chick-fil-a but they made us stay for overnight observation,,, and she's sitting there in the same spot she's been all day (we'd been there 10 hours or so by then) - when sundowners descends like a wet blanket. She looks at me, with this absolute horror and says, "is this a HOSPITAL?????" [Yes ma'am.] WHY AM I IN THE HOSPITAL??? [Well, we had an issue with your diabetes...]. YOU MEAN TO TELL ME I'M HAVING SURGERY AND YOU DIDNT TELL ME??? YOU LIED TO ME!!!!! [No, Mama! No surgery.] (The voice and the anxiety are rising...). YOU LIED TO ME!!!! . I'm not making this up. 5 weeks after I lost my completely coherent Daddy, they took her up to the same floor of the same hospital, where she is screaming like a banshee all the way up and for several hours after, "MY DAUGHTER LIED TO ME!!! SHE BROUGHT ME UP HERE FOR OPEN HEART SURGERY AND DIDNT EVEN TELL ME!!! SHE.LIED.TO.ME!!!!! SHE HATES ME! SHE'S TRYING TO K.I.L.L. ME!!!!

4)

One of my faves. Her diabetics doctor had an office IN the hospital at one point. We had an appointment. It was 800 degrees in Atlanta that day, stifling. I couldn't find a space close to the elevator, and on all but one floor, you have to take the elevator to the floor where you walk across a long breezeway into the hospital. Finally, I give up and drive them to the elevator. I tell my Daddy, "I want you to take the elevator to the breezeway and go ALL THE WAY into the hospital. It's too hot to wait out here. Go all the way in." (Nods). Note: hard of hearing and refusal to wear the hearing aid go right here. He always said the hearing aid made all noises equal and he couldn't differentiate what he needed, so he gave up and let me be his ears. I have to go down 2 floors to park, and am on the complete opposite side of the parking deck. I hoof it over to the elevator in the parking oven, get on and start to go up to where I "believe" they are now waiting INSIDE the hospital. On the way up, the doors open, and a young woman frantically sticks her head in, searching for water. She says "an older lady has collapsed out here and she needs water!!!" There was a lady in the elevator with water, but she didn't give it up because she said she was just getting over bronchitis. The doors shut and I said (in the elevator full of people) "you should have given them the water. She can be treated for bronchitis, but if she dies from heat...not so much". Everybody obligingly glared at the water woman, who turned beet red. Then it hits me what floor that was. My arms flew out and I screamed "OH NO!!!!! THAT WAS MY MOTHER!!!!!" I just KNEW my Daddy hadn't heard my instructions and was standing there in that pizza oven waiting for me patiently... I got off and barreled down the flint of stairs to that floor, and yes, there was my mom, collapsed out on the floor next to the elevator bank. She spent 2 days in the hospital that time.

It's been a ride, that's for sure. Maybe I SHOULD write that book!!!

This is quite therapeutic. Someone else needs to jump in with hospital stories.

[lookeyloo]

Oh Happy - you have been through it. You have a gift of putting very painful and heartbreaking stories into such a readable way. I hope you are printing them out!!

[Westiepeach]

Happy ~ I am hugging you so much right now. I do have hospital stories from when my parents were in the hospital. It was the kind of deal where you did not believe it when it was happening ... but now, years later, you can laugh about it.

 

[Micks Picks]

HFC I have stories, but too raw at the moment.  I am on my way out for a few hours.  Was talking to a lady today who had the same complaint that I did about taking care of mother and husband--they don't tell you the most basic things, little things that would ease your mind and save you time and a lot of work in caring for them. Made both me a the woman I was taking to very resentful of home health people, social workers, and doctors.  What a nightmare.  I don't know how I survived.

[RedPonyDriver]

The only good hospital story I have was when my husband had his surgery...14 hours in the OR, ICU afterwards. He was coming out of the anesthesia and they had him loaded to the gills with painkillers (major surgery). I could hear him from OUTSIDE the ICU doors BELLOWING...I. WANT. MY. WIFE. DO. NOT. TOUCH. ME. I. WANT. MY. WIFE. 

Needless to say, they went looking for me. I walked into his room, he took one look at me and fell asleep! At this point it was 10pm. He'd gone into surgery at 7:30 that morning and I hadn't eaten all day. I told the nurse I was going to slip down to the cafeteria to grab something to eat. The nurse said "HELL NO" I'll send one of the techs down to get you food...you are not leaving him! 

He doesn't remember a thing! 

[RedPonyDriver]

Oh...real quick...started training for my apprenticeship the 13th. My adopted sister is paying for my certification test since I don't have the $$ for it. I agreed to pay her back when I get reimbursed. Interview is Tuesday but from what I understand it's pretty much a formality at this point. YAY!!!

[frenchtoast]

HFC I have stories, but too raw at the moment.  I am on my way out for a few hours.  Was talking to a lady today who had the same complaint that I did about taking care of mother and husband--they don't tell you the most basic things, little things that would ease your mind and save you time and a lot of work in caring for them. Made both me a the woman I was taking to very resentful of home health people, social workers, and doctors.  What a nightmare.  I don't know how I survived.

My mom and I would disagree with the workers not telling you anything. The hospice workers, the doctors, the office people all were helpful, thoughtful, and thoroughly explained what was happening and what was going to happen. They couldn't stop the falling or getting up in the night, but they tried to figure out a way to help her sleep. They listened and answered what they could. 

 

What I think is frustrating for everyone is that sometimes the doctors don't have the answers. Doctors and nurses don't always have the answer and sometimes even when they do it can be completely turned upside down. And I always try to keep that in mind when putting my well-being and those that I love in their hands.

 

A quick funny hospital story. (Well, not especially funny, but cute) My daughter was my second child, and luckily for me, both births were easy and uncomplicated. (Aside from the amniotic sac not breaking with my daughter. And the doctor taking a loooooong hook like thing and trying to puncture it, saying, "There's something hard here." And then saying it wasn't time to push yet and the head crowning. It was quite the sitcom moment. And that hard thing? Her head. Poor OB was there with his hands ready to catch while the nurses rushed around setting up the bed and the incubator. And to end that I always say, "I told them I was ready to push!") Aaaaannnywaaay, it turned out that we were able to put A-boy down to bed before leaving for the hospital and hubby was able to get home before he woke up in the morning. So, a newly potty trained 3 year old was visiting me. And noticed the emergency pull by the toilet. And of course he pulled it before we could stop him. And three nurses come rushing in 10 seconds later. They thankfully laughed it off, knowing it was a little sibling. But boy was that embarrassing.

 

And when I had my bunion surgery, and was getting ready to leave, hubby went around to get the car. When he came in, he looks at me and the nurse and says, "It's hailing outside." Cue the holy crap, how am I going to get the car and not get the foot wet and handle the crutches in effing HAIL?? Yeah. We managed, but it was wacky.

[bigskygirl]

I remember the first time I talk with my husband after his kidney transplant. I stay at home while he went to Seattle because someone needed to take care of the home front, and I was a basket case the day he left (I probably would have drove him and the transplant team crazy.) He was drugged up big time. He kept asking me did the transplant really happened, why am I in the hospital, what did they do to me, etc. etc. I had to stop from cracking up laughing.

 

And then there was the time I went in for my endometriosis operation. My system had to be completely cleaned out since the doctor was a little concern about the cyst being close to my colon. I had to drink this nasty stuff and take antibiotics the night before. I ended up getting sick about four hours before heading to the hospital. My poor husband had to pull over once on the interstate because I got sick. I scared the poor nurse who was checking me in because I got sick twice before they finally came and took me to the OR. Luckily, they gave me something to help calm my stomach down before operating. The drugs they use to put me under and for pain made me loopy because I could not recognize my husband when he came to visit me. Ha!!!

[Happyfatchick]

One of our hospital trips, Mama lay there in bed all day looking straight up at this metal track on the ceiling. No one ever uses them, but it's for (I think) an IV to hang, so you can move it around the bed. U-shaped track. At some point during the day, that track became something you might see in a camper. Therefore, we must be camping.

Where're the guys? (Starts the conversation)

What guys?

You know, Sonny and Daddy and your brothers.

[Note: I'M not IN a camper, so I have no idea where we're going with this.]

I don't know, Mama. They must be outside somewhere. (Outside about 30 miles south of here is what I'm saying...)

They must not be back yet.

Must not be, I agree.

Wonder if they got anything.

Anything like what?

Well, I wonder if they shot a deer or anything.

Okaaaaaay. [ahhhhh, I think. We must be camping/hunting, I decide]

She lays there, absently fingering the nubby green hospital blanket. Pretty soon the nurse comes in to check her IV. Mama looks up at her serious as a heart attack and says,

I was thinking. (Pause, while fingering her green blanket...). I don't think they de-flea'd this thing before throwing it in the bed.

The nurse: I'm sorry, hon...what?

Well (explains Mama), they've been out hunting all day, and I guess they skinned this deer right out there in the yard and throwed the hide right on the bed. I don't believe they even got the fleas out. I reckon we should check it before we get full of fleas in here.

Same night, later on, a different nurse comes in and is leaning over Mama, adjusting the IV port (which Mama would pull out TWICE during the night). She had long curly dreds down her back. Mama makes a horrified noise and reaches up to grab a hand full of braids and says, "BE STILL!!! THERES A SNAKE ON YOUR BACK!!! I got him!!!"

Back to the knee surgery. The first day (the morphine day), they put her on one of those machines that brings the leg up and down in a cycling motion. At the bottom of the cycle, the foot goes into a contraption that doesn't "do" anything other than rotate the foot back out. Mama is absolutely CONVINCED that machine is eating her leg, and I'm letting them do it. She hissed at me "you don't love me!!! You've NEVER loved me. You're just going to sit there and let them feed my leg into that meat grinder!!!"

The next morning, they bring a potty chair up next to the bed, stand Mama up and put her on the chair. CNA is standing right there To assist, in case she is wobbly. She pees. (Success!!!). Jabbering the whole time. When she finishes, the CNA unrolls a bit of toilet paper and tries to hand it to Mama. Mama stares as if the woman is trying to hand her a soiled diaper.

"What do you want me to do with THAT?" She asks.

The kind lady leans over and motions with her little wad of toilet paper, "you know...to wipe yourself..."

Mama snatches that paper and says "I KNOW WHERE MY TWAT IS!!!"

[Love2dance]

Oh...real quick...started training for my apprenticeship the 13th. My adopted sister is paying for my certification test since I don't have the $$ for it. I agreed to pay her back when I get reimbursed. Interview is Tuesday but from what I understand it's pretty much a formality at this point. YAY!!!

Good luck, RedPonyDriver! Hope to hear great news Tuesday!

[Happyfatchick]

HFC I have stories, but too raw at the moment.  I am on my way out for a few hours.  Was talking to a lady today who had the same complaint that I did about taking care of mother and husband--they don't tell you the most basic things, little things that would ease your mind and save you time and a lot of work in caring for them. Made both me a the woman I was taking to very resentful of home health people, social workers, and doctors.  What a nightmare.  I don't know how I survived.

oh Micks, I SOOOO understand this resentment. It's still so raw for me I can't even talk about that part yet. Some of the hospice people need to be bronzed and put on pedestals. Others need to be walking around looking for work. It's a tough, hard job and I don't envy them at all... But if it's NOT your life's work, go find something that is. There's a WORLD of difference in fighting to preserve life and helping a patient and their family learn to let it go. Not many people are trained to know that difference. I believe this is because - as her neurologist said to me - humans are hard-wired to move forward. Turning in our fast-pass to life (or turning in that card for someone else) is so uncomfortable for us BECAUSE we are built to move forward, or at least sustain. There's just a point that NOBODY wants to see, when fighting is actually more brutal than letting go.

An small example: my dad was in a hospital. We were trying to get him home to die because that's what we do... But we couldn't even get him well enough to move him. Anyway, they have IV's pumping non-stop. And his kidneys were not pumping at all. He's swelling - his hands are HUGE. I finally said "you have to STOP. There is no outlet for all this fluid, you have to STOP putting that in there. It has nowhere to go". [my point: most of us are completely at the mercy of medical staff. Why am I having to make a call about stopping fluids???]. It's so so so hard, and in the end, we all are just doing the best we can. Seriously, we make mistakes, and so do medical personnel (although I'll say it pisses me off much worse when THEY screw up...). We just do the best we can, and hope something works. Or quits on its own.

[Love2dance]

Same night, later on, a different nurse comes in and is leaning over Mama, adjusting the IV port (which Mama would pull out TWICE during the night). She had long curly dreds down her back. Mama makes a horrified noise and reaches up to grab a hand full of braids and says, "BE STILL!!! THERES A SNAKE ON YOUR BACK!!! I got him!!!"

Back to the knee surgery. The first day (the morphine day), they put her on one of those machines that brings the leg up and down in a cycling motion. At the bottom of the cycle, the foot goes into a contraption that doesn't "do" anything other than rotate the foot back out. Mama is absolutely CONVINCED that machine is eating her leg, and I'm letting them do it. She hissed at me "you don't love me!!! You've NEVER loved me. You're just going to sit there and let them feed my leg into that meat grinder!!!"

The next morning, they bring a potty chair up next to the bed, stand Mama up and put her on the chair. CNA is standing right there To assist, in case she is wobbly. She pees. (Success!!!). Jabbering the whole time. When she finishes, the CNA unrolls a bit of toilet paper and tries to hand it to Mama. Mama stares as if the woman is trying to hand her a soiled diaper.

"What do you want me to do with THAT?" She asks.

The kind lady leans over and motions with her little wad of toilet paper, "you know...to wipe yourself..."

Mama snatches that paper and says "I KNOW WHERE MY TWAT IS!!!"

OMG.....I have NEVER laughed so hard at a post before this. Thanks for sharing.

[Micks Picks]

Frenchtoast I'm glad you got the information you needed.  I did not.  It sounded like you were telling me it was my fault.  It was not.  They could have told me some very small things that I specifically asked about that would have made a lot of difference in how I could care for them.

 

HFC thanks for understanding.  Hospice doesn't want you to go in hospital when you are home, but I told them if my husband said he couldn't breathe and to call the paramedics, I would.  There is simply no question.  He was ill for a very long time and the last 3 years about killed me.  In the end, although he couldn't walk, he got up and fell.  Again.  And I could see he had another brain hemorrhage (sp?) and I knew the only treatment was bed rest in the hospital because they could not operate.  He was close to dying, I knew it would be within a few days because he had started the death rattle.  So I said no to hospital although he was willing to go.  But I had no strength left to drive to hospital and wait there again.  So he remained home.  The brain bleed was probably good as it cut his misery by a day or two.   The support personnel were mostly horrid people.  Not all, but many.  One nurse came and took his blood a few times a week but she was only here for 15 min.  I hired a guy to care for him a few hours a day and keep him clean.  He was a help and knew a couple of little things like the things called chuck its.  that are like really big piddle pads that make life So Much Easier.  I asked and asked about that and means of getting more nutrition in him, and no dice except for the not really medically trained guy I hired.    My mom had a hard time too, and was not medicated enough for pain and not given strong enough meds for horrid diarrhea.  I have some stuff that will stop it and I gave it to her personally from my stash.  The outfit for her was neglectful in their care.    Ah well, then when I went in hospital for a month I had to eventually tell them they better put nutrition in my IV because I hadn't had anything by mouth and nothing nutritionally in IV for a month.  A MONTH.  They were surprised but looked it up, and oh gee, surprise.  So I'm worn out from neglect, inattention, and misdiagnoses from the medical community.  I am not a happy camper.

[Love2dance]

So sorry, Micks Picks. That seems like much too much for one person to have to endure. You and your family deserved much better care than you were given. Most of the caregivers I have encountered were like angels, but unfortunately, it isn't always true.

[Happyfatchick]

Micks, I'm so sorry you had to endure that. The truth is, palliative care varies with each individual caregiver. Our company came highly recommended, but our regular nurse who came once a week talked too fast, was absentmind, made too many assumptions and texted her teenaged kids too much when she was supposed to be giving us her attention. She hasn't been doing this long (less than a year). SHE is a prime hard example of a person hard wired to improve or at least sustain. If she could have accepted the situation earlier, the end wouldn't have been so brutal. When someone else came out from the company over the weekend, there was a COMPLETELY DIFFERENT (correct) assessment. Complete shift from trying to maintain to going down gently.

I guess what I'm trying to say is that it probably wouldn't have done you one bit of good to ditch and replace your caregivers - even within our same organization, the approach and treatment varied by polar opposite degrees. And you're right, sometimes we hit our own stashe to get the job done.

I hate that you had to let go of your mom and husband as you did. It wasn't going to be easy, no matter what - but sometimes the right advice and the right approach makes all the difference. I have friends and relatives who've used a hospice team and absolutely loved it. My mom's sitter and I are already tossing around a verbal review for our regular weekly team nurse. Loved her almost like a sister...but she needs some correction and I'm happy to provide that feedback. (And 15 years in HR makes me want to be the one to GIVE the review in person).

I hope you had your turn to TELL someone your impressions of the care your family received. It could make it easier for someone down the road.

[Barb23]

My sister was in the triage area of the ER with my BIL. She overheard the nurse next to them ask her patient "Besides mine, do you hear any other voices?" I'm sure this is a normal question for ER workers but it cracked my sister up.

I think I told the following story last spring after it happened but I thought about it again when a poster recommended keeping Gatorade on hand to replace fluids when you're sick. After having a week or two of the stomach flu & not getting better, I went to the ER. I had been keeping down Gatorade & the last flavor I drank before going was a blue flavor. My lips were very dry & cracking & the blue color stained them. We (my son & I) didn't really think much of it til all the nurses & docs that came in to see me looked at me wide-eyed & questioned if I was breathing OK. I saw many a specialist that morning & it got to be funny waiting to see their reactions. Thank God for the nurse that got my mouth cleaned up when I got to my room.

I'll save my funny hallucination/dream stories (same visit) to another time. Yes, it's amazing what we say & do & don't remember.

MicksPicks- I'm so sorry to hear what you went thru & I wouldn't think much of healthcare workers if I were in your shoes either. I don't mean to downplay or be disrespectful of your situation but it seems like you were one of those people that when bad things start happening, they don't stop & just get worse. It's sad when people that should be helping (hospice & palliative care workers) don't & end up giving the good ones a bad name.

[Absolom]

After hearing these experiences I'm even more thankful for the hospice nurse sent for my step-dad.  She was an angel and I can't think of a thing she could have done better. 

[ehall1052]

Here's my hospital story. A few years ago, my husband had heart surgery and was in the cardiac ICU, where you can only visit 10 minutes each hour. In the cubicle next to him was a lady on her death bed and her WHOLE family (at least 50 people) were keeping a vigil. The nurse shoos me out to the CCU waiting room, where this family is having a dadgum family reunion, loud, laughing and food tables everywhere. I couldn't hear the TV, couldn't hear my pastor praying with me...they weren't even nice enough to invite me to eat. I complained to the nurses about the cacophony, but shoot, they didn't care, the family fed them! This went on for days! I did write a complaint letter to the hospital administrator, but never heard back from him. I was wimpy back then, nowadays I would have complained more forcefully.

[lookeyloo]

Here is my hospital story. About 3 years ago Mr Lookeyloo had coronary bypass surgery. Went well. First night in CCU and moved to regular room. He didn't need any extra help so my sons (who were in town because their bio dad was dying of a brain tumor) went home. Next morning Mr Lookeyloo called me to say in the night a woman dressed in scrubs was rustling around his things on a table (he had his iPhone under his pillow). He asked her what she was doing and she said "go back to sleep". He said "get

Out!"'and called the nursing station. They never came. He got out of bed and walked down there. They had no clue and didn't seem upset. Next morning one of my sons pitched a fit and had Mr Lookeyloo's room moves to across from the nursing station. Called hospital administrators and ombudsman. No results. This hospital had just had an A plus rating. So much for that.

[pippity j]

Way way back when I was just starting out in my working in long term care life I had to listen to this tape of an inservice some guy gave.I cannot remember who he was or what all he talked about but almost 35 years later I still remember him saying in so many cases we are not prolonging life we are prolonging death.

 

My partner had open heart surgery.That night he had to go back into surgery because there was bleeding in his chest.We knew his recovery was going to be long and hard due to his many health problems.He remained in intensive care for a week.The nurses said he could use the one on one.After the week I had to go home.I should mention this hospital is 4 to 5 hours away.He wasn't great but things were looking favourable.He went into the next stage of care one nurse for 2 patients.I was talking to him by phone and I knew something was wrong.I am going to make a long painful for me story short.Minutes after me calling the desk and telling them something was wrong he suffered what they later called a catastrophic brain injury.I was trying for 45 minutes to reach him.No one picked up his phone.I figured he was laying in bed and I knew he couldn't reach it so I called the desk and asked about him.They said he was taken to intensive care and would not say why.They never even bothered to call me.He was full code at that point so when he arrested they crushed his ribs and broke the wires doing chest compressions so in he goes for surgery number 3.He remained on life support and unresponsive.Our winters here can be brutal and that one was one to remember.Travel was almost impossible and I couldn't get more time off work and could not afford another trip there.Most of his nurses were decent but there were a few that really made me feel like I was imposing on their day.Finally on friday the 13th in December I received a call at work in the middle of a crowded dining room from a neurologist telling me that their team has done everything possible and the time has come to decide whether to remove him from life support or put in a trach and see what happens.

 

For my sake I am going to skip some and go to where I get a call from a hospital 45 minutes from home just 10 minutes after a doctor at the other hospital tells me he will be staying there and life support will be removed soon,informing me he is being transferred there the next day.His departure was delayed 8 hours.A freezing rain storm hit here but it was snow where the hospital he was going to is.He was to arrive at 8pm.The police were advising people to stay off the roads.The intensive care charge nurse calls me to ask when I will be there.I said how?Its pure ice on the roads.They said so you aren't going to be here when his breathing tube is removed?I begged them to please leave it in until the next day that I should be able to get there by then.She sounded a bit sympathetic and said let me call the doctor and see what he will do.She called back less than 5 minutes later and she said the doctor says if he doesn't do it tonight he will put a trach in.I said absolutely no trach.She says I guess you want the life support removed then.They called me through the night twice asking me when I was going to be there that he may not live long.Could they not guess at the load of guilt I was laying on myself without making me deal with them as well?I did get down and I was racing a snowstorm on its way in.I stayed as long as I dared but had to get home to feed some animals that I had nobody to get to do it for me.And got totally snowed in.Yes the hospital called.I couldn't even get down my driveway the road was plugged the plows were off the roads and I live 45 minutes away.They want to know if I am coming down.They continued calling me about once an hour.I would have appreciated the calls if it was to just update me.I had had a brutally honest talk with his internist when I was there and she didn't think he could survive long but like she said the human spirit is an incredible thing and we just don't know.I had no false illusions.All I asked of her was to not let him have any pain.Even if the dose would be high,give it to him just no pain.I watched the weather all evening and into the night just hoping against hope that I could get out.I finally got rather rude with them calling and told them unless they were calling to tell me there is a change to just leave me alone.I would call them for updates and be down if I could.He died at almost 4 am.I have never forgiven myself for not being there.I will never forgive that doctor and I hope those nurses end up needing a little compassion and getting someone like themselves (not in this type of situation though it hurt too much).There is more to the story but I am still a mess when I go over it.I guess I was a mess at the time too but I am very grateful to my family doctor and his family doctor who are partners in a wonderful clinic for helping me let go of a bit of the bitterness and getting me over the worst of it.