SPOUSE CAREGIVERS

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KarenS
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SPOUSE CAREGIVERS

It's hard to follow all member's posts and not get confused with someone elses info.  So I've asked if they can do a sort function by member/user which I feel would help.  Also, some of the topics don't always relate to a spouse caregiver.  I am staring this new topic for Spouse Caregivers on whatever subject any spouse of ill wants to discuss, and hope it helps.

KarenS
KarenS's picture
Tell us your feelings...

Caregivers of spouses tell us your feelings, what advice or info you can give us all.  We are all going through so much, which is both physically and mentally exhausting.  Maybe we can help each other get through these terrible times.  I've been through this twice, and it doesn't get easier.  There is sadness, hurt, anger, loneliness, no talking, no intimacy, emptiness, scared...  you name it.  A lot of mixed surging emotions, not to mention everything else we have to deal with. 

Do not give up.  This is not a good journey by any means, but one we have to get through...  hopefully with some support here.  Sometimes one just needs to be heard, or hear it from someone else.  Confirmation that you are not the only one experiencing these feelings. 

As Smedley said...  "Day by Day, sometimes minute by minute".  We have to take it one day at a time.  We are here for one another.  YOU ARE HEARD!

kennyandcathy
kennyandcathy's picture
Glad I found this forum.

Glad I found this forum.
I am feeling very all alone and becoming resentful.
My husband and I were married June 2014. He has had MS since he was 23, he is now 42. I knew of his illness when we were married. His illness doesn't bother me but there are many other factors. We used to be able to take "walks" and do things to relax as a couple but due to some legal issues stemming from Rx abuse that's not possible right now. To top it off, when he came home last August his medical issues had progressed and I lost my job. By trade I am a CNA. Our state offers the waiver program but I can not be his legal wife so we are being forced to divorced.
Since we have been together, he has gotten clean and worked so hard to do the right thing on the up and up. However I feel like we are punished for finding someone and falling in love simply because he is disabled. I mean geesh....did they does the government feel like the disabled won't find or don't deseve happiness? Its frustrating.. Our first anniversary he was incarcerated. He was arrested a month to the day and placed in custody 6 months later. This year just to survive we must get divorced. This not to mention the normal caregiver stress. I don't expect anyone to understand. We have already felt so much judgement for his past mistakes. I fell in love with him though. My growing depression is hurting him..... I don't know where to turn

Ineedhelp
Hope things have improved

Hello. I hope that things have improved for the two of you. Have you sought help with your depression?

If you don't mind, would you elaborate on the "wavier program" and why you have been forced to divorce? My girlfriend (for whom I am giving care) wants to get married, but I am wary of the potential legal problems that could arise.

No one can understand what it's like to be in your particular situation, but I hope you can take comfort in knowing many in this forum have experienced the stress, frustration and emotions of difficult situations associated with caregiving.

Guitarkire
Guitarkire's picture
Feelings

I'm ashamed to say sometimes it's hard to distinguish between caregiver and husband. As the years go on, 30 years together living with sci, for some reason I'm scared, my wife had alot of medical issues last year, and I'm having a hard time finding another husband who takes care of his wife let alone for 30 years, so yes I feel alone. I'm praying someone out there understands, maybe this is the place.

ballen517
Feelings

Hi

I too am a caregiver for his wife. She was diagnosed with MS 5 years ago. The disease has been progressing more in the last year making her require the use of a wheelchair more and more. In the last year she fell in April breaking her arm and just last week she fell and broke her ankle. This has definately required full time wheelchair use. She unable to put any weight on her foot so I have to lift her in and out of the wheelchair and help with personal care. It has been upsetting for both of us. I was already doing all the housework/yardwork and cooking. It can be a lonely / stressful situation.

I have tried to find a support group but the ones in my area are mostly for the patient not for the caregiver. Or they are during the day when I have to work.

Good luck

Smedley_Butler
Thanks for starting this

Thanks for starting this Karen.  I'll have to come back when I have the time.

KarenS
KarenS's picture
You're going to have some manure....

This is something we should all hear... it's good advice. Listen to this video all the way through. The beginning is promotion, but the actual portion of his program is good with things said that will hit home for everyone. 

I'm not what you'd call a church-goer, but I do believe in G-d. After watching the morning news yesterday the Joel Osteen program came on. I was about to change the channel when he started talking about manure. He said, We all go through some things in life that stink... We don't like it... It's not fair... Why did my relationship not make it... Why did I come down with this sickness. You've had more than your share of stinky stuff.....

http://www.lightsource.com/ministry/joel-osteen-ministries/video-player/nothing-is-wasted-481552.html

KarenS
KarenS's picture
Take care of you...

I read:  Health affects everything- relationships, family, finances, joy and so much more. Anything you do in the name of health today will have a favorable impact on the rest of your life.

Sounds right.  Guess we caregivers need to take better care of ourselves.  Hard to put yourself first with everything else you have to do, but we do need to care for ourselves too.  Make an effort to do that please.

KarenS
KarenS's picture
Good book for women and men to read....

I picked up "The Caregiver Wife's Handbook" by Diana B. Denholm from the bookstore yesterday, and stayed up late reading it all the way through.  I agree and think it's a good book for both women and men who are caring for their sick or disabled spouses, or loved one.  The book relates to much of what we're all going through. 

I highlighted all the areas throughout the book that I thought related to my husband and I.  Then I handed it over to my husband this morning.  He said is this something you want ME to read.  I said yes, it will give you insight of how I'm feeling and also what we're both going through.  It may help us to communicate better.  He said ok. 

Maybe you can't talk, because you're spouse won't listen or resists...  them reading the book might make them look at what you too are going through, and what you may be feeling.  They may open up to how they're feeling.  Also, help to know some of the final planning or financial info that needs to be addressed.

It gives some live couple situations that might not be exactly yours, but hits home on many and feelings from both sides.  You can buy it online, or have a bookstore order it in for you so you can look through it before purchasing as I did.

KarenS
KarenS's picture
How's everyone doing?

How's everyone doing?  I haven't seen much posting, so I assume everyone has their hands full with caregiving and work.  Hopefully you're all taking some me-time too. 

KarenS
KarenS's picture
My Husband's in the hospital...

At noon my husband started getting bad pain across his whole abdominal area.  His pain was increasing yet he refused to go to the hospital.  Finally so bad that he agreed to go to the emergency.  They took a CT and said he had Pancreatitis, and some ducts in liver were inflamed possibly from gallstones (though he had his gallbladder removed in 2009, you can still have them).  The Pancreatitis can be from many kinds of meds, and sometimes from unknown...  also from drinking, but he doesn't drink.  They don't think it's cancer related.  We'll find out more tomorrow, as they are going to take an MRI.  I'm tired of seeing that hospital as nice as it may be.  I also feel a nervous reck.  I better get used to it, because it's not going to get any better. 

Smedley_Butler
Hi Karen.  

Hi Karen.  

Yeah, we've been busy and this will be short too.  My wife started hurting more and so got a CT which gave bad results.  The cacner has turned aggressive and now she is trying to devide - navelbine or nothing.  She is terrfiied of the side ffects of navelbine but I don't thing she is truly ready to give up yet.  But in the meantime she is fighting a whole bunch of other issues now and they are getting worse.

Good luck with your situation.  Hang in there.

SB

KarenS
KarenS's picture
My husband's worse too...

Short one too, I have to run back to hospital.  My husband is in ICU.  He had gallstones and pancreatitis (though he had his gallbladder removed 6 years ago).  He's on a ventilator, blood pressure is all over the place from all this, and kidney function is bad now so they may have to put him on kidney dialysis...  none of this is cancer related.  They have him so drugged, he's in lahlah land.  They just took him down to run some 3 prong line through his arm up towards heart to put all the drugs through him.  It doesn't look good.  I was holding strong, but just lost it and gushed tears.  Ugh!  He's a tough cookie, but all this is hitting him at once and his body seems to be on over-load.  I just came home to let the dog out, so back I go.

Smedley, I am so sorry about your wife.  These are rough times.  You hang strong too.  We have no choice, we'll have to get though this with our spouses...  and hopefully their journey isn't too painful.  Stressful to say the least. 

My prayers to all to get through, and for their loved ones. 

 

Smedley_Butler
Speaking of hospitals..

I just brought my wife to the hospital a few days ago.  For the 2nd time in two week sher pleura filled with fluid.  This time they put in a catherter to amke drinaing them easier.  She is also haveing more pain and several other problems.  Further treatment is no longer an option.  We are trying to get her somewhat stable and then get her into hospice.  Then, as you know, we can only wait.

Hang in there everyone.  My thoughts and prayers are with you all.

KarenS
KarenS's picture
Smedley, I'm so sorry...

Smedley,

I'm so sorry to hear that.  My heart goes out to you, and your wife.  It's a difficult thing to go through.  I hope for her peace, and no pain.  Hospice will help.  There are no words to make it easier for you.  Please try to take care of yourself, as we tend to put all our focus on the ill.  You getting yourself rundown or sick won't help. 

My husband has been in ICU for over a week now.  Not even cancer related.  Ugh!  He's on a ventilator, and his kidney levels were getting higher so they started dialysis today.  He's on heavy duty pain meds, and unresponsive (no movement at all) from being so drugged.  The Doctors and RNs have been great at Scottsdale Healthcare Thompson Peak Hospital.  Yet it's still been up and down with his counts, etc.  He's a tough cookie, so I hope that pulls him through.

We both have to take it day by day, and just try to get through it.  Not much more one can do, it's a helpless feeling.  We just have to ride it out.  Lots of prayers. 

Mike1w
spouse

My wife is coming home from the hospital today. Its both happy and frustrating,.

 

Smedley_Butler
It's been a while...

So, Mike, how are things?  We have not heard from you since your first post.  I hope you are all doing well.

KarenS
KarenS's picture
I understand Mike....

I understand Mike.  It's a roller-coaster of emotions we go through.  There's so much we all have to deal with.  It's physically and emotionally draining.  I wish I had the answers.  This is the second time I'm losing a man to cancer.  Ahhh...  that's if I can get him out of ICU from something not even cancer related.  It's touch and go.

Not much we can do but ride that wave.  Through it all we have to take care of ourselves, and get a break.  Ha...  that's coming from a woman that spends 12 hours a day sitting in an ICU room for the past 10 days waiting for doctors/specialists to make their rounds.  I try to eat good and get sleep, but lets face it...  we don't really take good care of ourselves as we should.  Skip meals, and restless nights.

It helps if you have family or friends near.  Though many may not understand your feelings unless they've walked in your shoes.  I have no family or close friends in state, which makes it harder.  I'd love to escape with a friend for a nice dinner and drink.  Just to breathe.  Here helps a little, to tell your story and hear you're not alone in your feelings or what you're going through.  Though I wouldn't wish this on my worst enemy. 

I hope we all have the strength to get through these difficult times, and have someone in your life you can lean on. 

Smedley_Butler
She's back home

Well, she is back home and the first night has been a nightmare.  She is on hospice now and they are great, but the meds the hospital sent us home with were terribly insufficient and the an issue we hoped would only be, at most, a weekly thing reared its head again tonight after only a few days.  I don't expect to get any sleep for 2, maybe 3 days before things start settling back down.  Maybe a quick catnap here and there.

We both just want it to be over.

 

Sigh.

KarenS
KarenS's picture
Smedley...

Smedley, I am so sorry!  Is there no one that can take over watching, while you get some sleep or care for you?  Heck I'd help if you were in the area.  I make myself leave the hospital after a long day there, so I can get sleep.  You're no good to anyone if you get ill too.  There must be something you can do, or some help we can get you.  You may be a strong guy, but you can't do this alone.  What state are you in? 

Smedley_Butler
Things are getting better and...

I have help for a few days.

Her pain was out of control anf the other thing was quite unexpected.  But we have a better handle on the pain and  won't be surprised by the other again.  We also got one of her meds reduced and that seems to have stopped the semi-psychotic episodes we were going through.  So things on that front are MUCH better.

A relative came to town today to help out for the next 5 days or so.  She's only been here a few hours but she has made a real difference.  With her tending to my wife, I was able to get a bunch of other stuff done I have been putting off and was relieved of some of the caregiving stress.  Now I'm about to go get my first real shower in about a week and then a good 5 or 6 hours sleep.  Her help good not have come at a more critical time.  I was about to lose it!

And with that, I'm outta here.  Night all.

SB

KarenS
KarenS's picture
So Happy...

Smedley,

So happy she's home getting care, and you're getting a long needed break.  Hopefully you can get some rest, and not be so stressed.  My husband's still in ICU.  Today I ate gorilla cookies when they sent an am shift nurse that wasn't experienced in running the CRRT dialysis he was on.  Too long of a story, and I exhausted from my 12 hours days spent at hospital.  One wonders what would happen if they didn't have such good advocates like us watching over them.  It's been two weeks, and it's still going to be a long haul in there.  So it's to bed for me, and up and at em' 5:30am to start all over again. 

I'll say good night all too. 

 

 

Smedley_Butler
Hang in there

Hang on, Karen.  You are doing God's work.  Someone has to watch out for certain people and these are our charges.  

I wish I could will you some help.  Mine has been a Godsend.  The hospice people are stepping in and stepping up also.  I'll be making use of these good people also!  These past few days we have had friends appearing almost out of nowhere so that has been nice and some of them have the ability to help here and there, even if it is just to babysit while I go grocery shopping or run other errands.  I'm still tired and worried about the future, but I am better able to deal with it now and I have a little breathing room to get some other things in order along the way.

I sure hope you get some relief soon.  You are on my mind often and I hope you can feel it.  I can't be there or offer any other help, but just like when I was at my lowest so far last week, know that someone is out here thinking of you, praying, and hoping the best.

 

SB

KarenS
KarenS's picture
I'm having a melt down....

Smedley, I'm so glad you're finally getting som help.  I understand when you say you're worried about the future.  The unknown is always difficult to imagine.  It's not easy caring for them, and it won't be easy when they're gone either.  It will be a struggle either way.  I wish it were easier to go through.  The hurt does gradually lessen, but it takes time.  Thank you for all your kind words.

I wish my family or friends lived in state.  It's nice to text or talk over the phone...  but sometimes you just want someone to talk to in person.  I don't have that privilege, so I'll have to make due. 

I'm having a melt down today.  I'm on overload.  It's unbelievable the crap you go through with hospitals, RNs, and being a pit-bull watching over the ill.  So they have him on a CRRT dialysis, and get people from another hospital floating to his hospital to do it.  NO one at his hospital is experienced in it.  Today an RN who only watched for a few hours was administering it.  When the cassette needed to be changed she didn't know how to, so she was waiting for help from a supervisor..  over 2 hours while she was on phones, and sitting at the desk.  When she finally came over she couldn't get it going.  They were trying to get it going for over 45 mins with the dang alarm going off continually like a loud fighting bell going off. 

So I talk to the Critical Care head, who seemed complacent about it all.  What's he tell me...  That not having it run isn't life threating....  that they are good nurses (which they are, but don't have experience using this machine)..  also that the Apache score for multiple organ problems show out of the 5% that do go home die within 30 days.  He said you should look at it...  I said I WILL!  With all the ups and downs it made me feel like I got a kick in the stomach.  You get doctors that are debbie downers, ones who are positive, maybe sugar-coat it, detailed ones with all the ins and outs, and then this...  smug, maybe because he felt he had to defend his staff.  I say, I feel sorry for them getting pushed to run a machine with nonsupervision or hands on. 

I immediately called his Oncologist whos been treating him for the past year and a half....  whom knows him and me.  He said, Karen he is NOT a statistic.  I'll come to the hospital tomorrow morn and look over all the records, and assess it.  Then go over it with you.  Now he is not only a good doctor, but great person.  This is not cancer related, so for him to do this is so appreciated.  I need some support.  I feel like a pit-bull hoovering over everyone 12 hours a day, trying to make sure he's getting anxiety and pain meds timely. 

Oh, I forgot to mention they sent a RN from a sister hospital that was supposed to know how to run that machine, but kept ask the am RN questions over and over...  she knew nothing.  The head said, I agree they never should have sent her.  So, honestly are WE the spouses/caretakers supposed to be there every minute to make sure these trained professionals are doing their  job or know it?  SERIOUSLY!!!!  That's crazy. 

As you can tell I'm upset, mad, and extremely tired both physically and emotionally.   On that note, I need to eat and get to bed so I can start another 12 hour day.  It's been 2 extremely long weeks, and there is no light at the end of the tunnel yet.

Smedley_Butler
Hope things are better, Karen

Hi Karen,

Sorry it took a couple of days to get back.  My wife took a bad turn so I got real busy real fast.  I'm sure you understand.

Try to not let the doc, nurses, insurance cos, and all the rest get you down.  I finally got ours trained to know that I was the boss, not them.  They finally learned that I was gonna doggednly persue the best for my wife that I possibly could and they may as well get on board.  It was gonna be a LOT easier for everyone that way.

I hope things have eased up for you at least a little, but I fear they have not.  I just wanted to check in and let you know you are on my mind and I am hoping and praying for you.

Hang in there.

SB

KarenS
KarenS's picture
Tracheotomy....

Thanks Smedley!  I must say, it really helps having the support, and just an ear.  It's not quit the same as a call, but it does help.  Seems like most like texting on the cell phone which I'm all for, but it's harder communicating all that goes on.  I'm sorry your wife took a bad turn.  It's hard when we have so many ups and downs with their health.  You really can't get excited, because as soon as you say something good, it turns around again.  I'm very much on the ball of caregiving, and dealing with hospitals.  As one friend calls me when it comes to that, you're a pit-bull with lipstick.  It's meant as a compliment.  Funny you too use a doggie phrase.  Cute.

I think I have the whole staff on board now.  They know I don't want practicing on him, and only staf that has had hands-on with treatments.  They're actually a great team. 

Yesterday one of the Critical Care Head said they want to do a Tracheotomy, as he's been on a ventilator for over 2 weeks.  Also, when they try weening him off the sedation so they can get the ventilator out, he struggles to try pulling himself up which increases his heart rate and blood pressure.  It also gives him the gagging affect and shortens his own breathing, making him use more oxygen from the ventilator.  It's a rat race...  they have to get him off of sedation to get then ventilator out, but when they try their get all these other complications.  Round and round we go. 

I just couldn't make that decision yesterday.  I said lets give it until tomorrow, so I an rap my mind around it.  I will give the ok today.  I understand the concept, just needed to check out all the pros and cons first. 

Let's hope today is better for all of us.  For one I must say, I'm exhausted.  Sleep, and eating well aren't covering the daily grind and emotional drain this puts on one.  It's tough, but we must all hang in there. 

 

Smedley_Butler
Good on ya, K.

You sound a lot better today.  I'm glad you got the docs and staff on bopard and are working more as a team now.  Makes a world of difference!

My wife's bad turn is a bit more than that.  She is in full decline now.  She is shutting down.  It is looking like she may have only about a week.  Maybe a bit more.  I can't decide whether to tell her or not.  Her younger sibling and I are th eonly ones that really know it now.

As muchas I hate to admit it, I am really looking forward to it for everyones' sakes, but mostly hers.  She has been fighting this thing too hard for too long and she deserves some painfree peace.  Also her sibs, kids, and dad all need to put this behind them and get one with their lives.  I don't know what I will do other than continue taking things one day at a time and seeing that her final wishes are all carried out as best I can.  Beyond that it is all as if behind a far-off haze.  I just can't see anything there yet.  

But really, we are all OK.  We've known for some time that this is coming and we have gotten mostly everything prepared.  We've pretty much done the bul kof our grieving already.  It's time, and it's OK.

I'm glad I found this place and especially you, Karen.  You came on here at jsut the right time for me.  I was right on the edge and you pulled me back.  I am eternally grateful.  I hope that I have been of at least a small degree of comfort to you in return.

So  take a deep breath, let your mind and body relax a bit, and take your next step.  Then the next.  You'll get through it.  

SB

KarenS
KarenS's picture
I understand SB...

I'm not sure about better, but we're all on the same page at the hospital.  I'm so tired of the long days.  Almost 3 weeks now, and I feel like I live there.

I don't know the circumstances with children or how your wife feels.  I know from the start of his cancer 6 years ago, I let my 3 grown step-daughters (with family of their own) know exactly what was happening and gave them continual updates.  Even now, though not cancer related I gave them all continual updates and would it come to the end I'd be sure to tell them right away.  That being said, I would not want them to be crying all over him or cause a scene as some do.  Nor would I want him to know were he in the hospital like now.  It's stressful enough on him.  But were he at home, and they say you have a month left I think he should know in case he had anything he wanted to do prior to the end.   When my fiancé died from cancer, he was supposed to have a 3rd surgery but took a turn and died in City of Hope within a few days.  He was so drugged (out of it), and I did not say anything about death.  I told him I loved him...  did not cry in the room, and before his last breath I told him it was alright to rest and go to sleep my dear.  Heartbreaking, but I hope he went in ease.

I understand that you would not want anymore pain for her.  It's extremely hard seeing a loved one go through so much.  It drains them, and the family.  Very unfortunate.  There isn't much you can do, but take it day by day...  be supportive, and loving.  Do what you can to comfort her. 

You feel you're ready.  Honestly Smedley, we think we are...  you feel like you've already lost that person, the one you knew..  but after, it's just as hard for some time.  See you're very busy now, but after it gets quiet...  you have all this free time, and though you need rest you'll feel a great void from that free-time.  At that point you need to get out, do things to keep yourself busy.  I went back to work the next week.  I just had to work to keep my mind on something.  Then I had wonderful neighbors in CA that got me out for bike rides, dinners, and events.  You really need people to get out with. 

You have been a wonderful person to share all we're going through with.  It goes both ways.  Tomorrow morning they're putting a tracheostomy and peg in him.  He's been on the ventilator too long, and they're concerned about pneumonia, and other health issues.  They're unable to get him off the ventilator, because as soon as they wean him off sedation he gags and exerts himself that the struggling forces him to breath too heavily.  It's a vicious circle.  Hopefully the trach will be more comfortable, and will transition him to breathing better.  We hope it's temporary, and later will be closed off. 

It's hard on all, especially the girls since they are in our hometown Chicago.  They want to come, but then would like to be here when he's alert and recognizes they're here.  Hopefully that will be shortly.  I'm sure to get through it, as we all must.  I may be worse for the wear, but what will be will be.  There are many things we have no control of, so you go with the flow. 

You take care, and we shall both try to stay strong.  Keep me updated, and I'll keep you and your wife in my thoughts. 

 

 

 

Smedley_Butler
Are we the only ones?

So are Karen and I the only spousal caregivers on here?  Surely not.  Let us hear from you!

KarenS
KarenS's picture
It appears so...

It appears so.  Maybe they're all so busy with the caregiving.  I am so wound up after the long day, so it takes awhile for me to come down.  Well, I just got a call from hospital that whne I saw caller id sent my heart into a race.  Now they want to go by lungs and look around and do a biopsy.  Not only does this disturb me, because his cancer spread to lining outside of lung...  so is this going to disrupt it.  Plus there was no talk of this, and they say I have to decide now because suegery will be changed from 10am to 7am.  The RN who called is going to have the Critical Care Head call me to explain.  I told her, you're sure not making this easy.  Ugh!  When it rains it pours.  So here I sit waiting.  It would have been nice if I could have spoke to his Oncologist first.  Excuse me, but all I can think to say it CRAP.

 

KarenS
KarenS's picture
Bronchoscopy

So it's a Bronchoscopy they want to do too, which the RN said they'd be looking around the lung and doing a biopsy.  She has the doctor call...  I express my concern about poking around where the cancer is, and he says no they wouldn't be going by the lung or doing any biopsy.  The RNs call back to get my verbal consent, and give me the name of the procedure.  I look it up, and it says they do.  Am I nuts or am I getting conflicting info here. 

Then she tells me he's a very sick man, and I need to make a decision now.  I'm like saying to myself...  No shit sherlock...  as if I don't know he's a very sick man.  Something else to worry about.  They sure don't make you feel very comfortable, and don't explain much.  I don't like feeling pressured and not getting the correct complete info.  Maybe if I were like some, who just said ok to whatever without checking out all the pros/cons and what it's all about. 

At this point I feel brain dead I'm so tired.  So they'll do it, and I hope don't disrupt the cancer too.  I'm off to bed, because I have to be there at 6:30am now.  No peace for the wicked.  I'm actually going to see the play "Wicked" this weekend, so it befits me. 

WaltK
New Here

I just found this site and have read this thread. My heart and prayers go out to both you KarenS and Smedley. I am a caregiver for my wife but it is much less intense than what either of you are going through. She is mobile after an Aortic heart valve replcement, but still fighting the breast cancer that returned after 11 years as secondary bone cancer.

KarenS
KarenS's picture
Welcome Walt...

Welcome Walt, glad you found this site.  Thank you for the kind words.  It's hard on all of us, caregiving isn't easy.  I hope you take care of yourself as well.  That seems to be the hardest thing to do.  We seem to take a back-seat to ourselves.  There's an urgency to do what's needed for those in need, while we try to just exist. 

Smedley_Butler
It's done...

I can't talk much now, but my wife passed this afternoon.  It was quick, quiet, easy, pain free, and she was surrounded by people who love her.  Can't ask for much more than that.

 

Bless you all.

SB

KarenS
KarenS's picture
Smedley, I'm so sorry...

Smedley, I'm so sorry to hear of your wife's passing.  Sad, bitter sweet to hear she went with ease.  My thoughts and prayers are with you, and your family. 

KarenS
KarenS's picture
3 weeks in ICU and counting....

My husband's been in ICU over 3 weeks now.  I woke up at 4:30am to get to the hospital before they were to insert a trach.  Cancelled for the second time, as his blood count was down a little and they needed to give him some incase any was lost during surgery.  It's rescheduled for tomorrow at 9:30am.  It's been long 12 hour days I spend up there.  Getting there before the doctors make their rounds, and staying until the RNs shifts change.

One of the RNs said should he get out, he'd be in LTC/Rehab for months!  That he would have to learn to breath, eat and walk again...  and hopefully the trach would not be permanent.  I had to take a deep breath, because no one gave me a clue it would take that long.  I realize he is a very sick man, and is not out of the woods yet.  He could possibly die.  It's a day by day thing, and just trying to get one organ up and running at a time.  He's made some improvement, but has a far way to go.

It's hard with no family here.  I feel like I'm tackling this alone, though I have support by phone or texting with them.  I find peace in the quiet after a long day sitting, and waiting there.  There's not much I can do...  offer kind words of comfort...  be an advocate for the best care, and make sure things get done.  Yet it doesn't seem enough.  Sounds strange, but I feel guilty eating...  while I see him lay there unable to enjoy anything...   in pain.

It's an awful thing being ill, and not good being the healthy one either. 

KarenS
KarenS's picture
C. Diff now...

Now he has C. Diff.  When it rains it pours!  They said no additional risks in getting the PEG in with it, so they got that done this morning.  Now on to the next hurdle. 

Smedley, Walt, Mike and all other spouse caregivers I hope things let up for everyone and we can catch a breathe. 

WaltK
Smedley, I'm sorry

Smedley. I am so sorry for your loss. I hope that you find some peace in her passing and are able to start a new chapter in your life while you keep her in your heart.

WaltK

 

WaltK
Don't feel guilty

KarenS, you say you feel guilty for eating while your husband lays there in pain. That is a natural feeling, but is more important to keep yourself as healthy as possible to help him. I know there are times when I don't know what day it is, but I made sure my wife recieved all her meds when she was supposed to have them. I'm glad I can help her.

KarenS
KarenS's picture
You're right Walt...

You're right Walt, I know that and do eat...  take care of myself so I can be a good advocate, and up at that hospital 12 hours a day.  Still, though you know this...  you do it, but still there is some weird kind of guilt.  It's not new to me, I've been through the loss of a fiancé who passed away from cancer.  So I know the ropes, but it never changes your feelings.  Maybe I'm too empathic, at least he's told me that previously in so many words.  Myself, I find it a good trait to be caring of others. 

Hard to ride this roller coaster.  A little good, and then a few steps back.  Up and down.  Today he has a low grade fever 100.8°, C. Diff, kidney creatinine went up and BUN (possibly due to the C. Diff), heart rate, blood pressure and breathing all go up when they try to wean him off Propofol sedative so back on he goes.  Juggle juggle.  Not to mention the mess of paperwork he left me to deal with.  Procrastinator.  Ugh!

I hope you, and your wife are coping.  A shout out to Smedley, who lost his wife recently.  We all have a tough road ahead of us.  Hope we all have the strength to get through it all.  I for one am exhausted.  Early to bed for me.  First to the kitchen to throw in a salmon filet and make a salad.  See...  healthy.  ; )

WaltK
Coping

Hi Karen,

The wife and I are coping with most of the things that are going on. I'm learning to do more housework, more paperwork and more cooking. Hopefully your situation will take a turn for the better today. I'm home with my wife , but those days in ICU and at the hospital were long gruelling days.

KarenS
KarenS's picture
1 month in ICU...

Thanks for the kind words Walt.  It'll be one month tomorrow that he's been in ICU.  The minute we think things are going well something else pops up.  So he just got C. Diff the other day.  Today his sides of stomach are red, and hurt...  they think from the probiotics, so they'll stop them for 24 hrs to see.  Mind you the probiotics are suppose to help with the C. Diff so that would be a shame.  His sugar is up (possibly from tube feeding, and other meds), so they started giving him insulin. 

He's sedated, eyes open occassionally but not purposeful (meaning he doesn't respond or move).  We have to wear a disposable gown and gloves.  It's still so up and down.  Seems anything that goes good, something else goes wrong.  Stressful, and tiring for me and I'm sure him. 

I have to contend with a paper mess he left, and no insight to whats what.  I often wonder if people that make the other spouse blind to much understand how much more they place on their spouses plate, let alone all this they have to deal with.  Funny, I told him to please get it all cleared up, and explained how that would make it difficult for me.  Does anyone listen...  I feel it's all about control, and who suffers..  the healthy one who has to deal not only with the illness, long hours, possibly death, but everything else after or during too.

I can't help but keep saying I am exhausted physically and probably mostly mentally.  One hopes it gets better, but so far it's just more hurtles.  Everyone try to stay strong.  I'm doing my best, but it sure isn't easy with no family in state.  Just to go out with a family member or friend to take a break.  Enough bitching and moening...  it's off to make something for me and the dog, then to bed and do it all over again. 

 

Smedley_Butler
Sorry I've been away.

Since my wife died, it has been a whirlwind of funeral planning, consoling others, figuring out the bills and stuff she did, reorganizing my finances, and still keep up with the house and work.  

You're right, Karen, trying to figure out what was being done is hard.  My wife was an accountant and she ran our home finances liek an AR/AP situation, nit like a household.  So I went thorugh each account one by one and just figured out where we were, gritted my teeth, and just made adjustments; essentially starting from scratch.  I just had to take each account at face value that they knew what they were doing.  It has worked out fine so far, so maybe that approach would work for you, too.

 

Walt is right and I know you know it, Karen.  But take good care of yourself.  Sometimes you will just HAVE to take some extra time away from him just to get some quality sleep.  Don't forget to put the hospital facilities to use.  If you are a believer or not, the chapel is always a good place to go find a few minutes of quiet solitude to rest and recharge for a few minutes.   

And Walt, don't forget your own preaching!  Your caregiving may not be as intense, but it is still very hard work and it takes its toll over the long haul.  Pace yourself and let yourself take a breather when you can.

I have learned too late I coulda let some crap slide and just spent more quality time with my sweet girl, but I always had too much to do or I was too frustrated, irritated, in a hurry, or something.  Don't let that happen to you.  Take the time.  It's well spent.

Bless you both,

SB

WaltK
Good day

I got my wife out of the house today for more than a short walk. She does well in the car, so we drove about two hours to the New Jersey shore in Ocean City, got her up on the boardwalk and she got to see an air show that she didn't want to miss. Relaxing for me an something she really enjoyed. So today was good for both of us. I was so pleased to see how well she did.

Smedley, I hope I can handle all the things that you have done so far when the time comes. Great job.

Karen, please get the rest that you need. I tried to get my wife to go over paperwork and bills with me before her heart operation and she kept giving me excuses. Since she came home from the hospital, she admitted to me, that she thought it would be a form of surrendering to her problems if she told about the bills etc. I think this might be a frame of mind that many people have before they go through something that they might not survive. It doesn't help the caregiver but it might give some form of strength or fight for life. Just my thoughts.

 

KarenS
KarenS's picture
He's spirling down....

My husband is spirling down, not much hope he'll be getting any better...  organs are shutting down.  We've decided to continue treatment, with pain meds and sedation...  pain control will precedence over treatment..  and should all fail comfort control.  It's extremely sad. 

I also have my hands filled with all kinds of other things, and children (3 grown step-daughters) which are great but I feel torn in all directions.

KarenS
KarenS's picture
Can't sleep...

Can't sleep.  Woke up after an hour, and can't get back.  Called the hospital to make sure they were giving him pain med and sedation, as to not be in pain or anxious.  My fear is that he is having pain, and they recognize it as he now has a trach and can't speak if he wanted to. 

I'm glad to see everyone is wheathering all the stuff they're going through.  One certainly has no choice, but we seem to find a way.  I'm over-stressed from his health, and all that he did not give me insght to.  He has a mess with taxes, and I can't even find a CPA involved since 2011.  He may have filed an extension that ends 10/15, but can't figure that one out.  He may have dropped the ball.  It wasn't control of bills, more like he just puts things off and keeps me blind.  My COBRA runs out, and I need to get health insurance by tomorrow (some cutoff because they don't start mid-month).  When it rains it pours. 

I'm sure many have it way worse than me.  It will eventually get straightened out.  I just feel like it's all coming down at me at once.  I'm on over-load emotionally and finding it hard to cope.  My step-daughters are coming, one is here as of yesterday..  they are and will be very emotional...  rightfully so, but I do NOT want them hoovering over him crying uncontrolably and making him stressed out.  I would like to keep a calm atmosphere, and him as comfortable with calmness as I can.  Take it outside!  The one got a little crazed in the room, and it's just not what I want for him to hear.

Burial will be back at our hometown, so getting that done will be an event too.  My head is spinning, and mind going all over with so many thoughts, and things to contend with.  My main concern is getting him through it all.  Wish it were a bad dream, and I could just wake up.  He was doing so well with the cancer, and out of the blue the damn gallstones (though he had gallblader removed, and ducts cleared) turned to pancreatitis, sepsis and C. Diff.  What the hell.  Not the way it should have gone down, but we have no say when it comes to our time.  You could be here one day, and gone the next.  He thought he had more time I'm sure.  I on the other hand realize turns that can take place...  remember I've been through a death once already with a fiancé.  I told him, and others...  you need to live now, get your ducks in a row..  plan for future, but realize it too might not come.  Cover all your bases I guess. 

I want him to feel it's ok, that we'll be ok and that he's doing a good job...  to rest, and sleep.  Hold his hand, rub his forehead, tell him I love him..  just be there for him to feel comfort.  No worrying, or stress.  Everyone will be at my home.  I would like to crawl away, and find peace alone.  Selfish maybe, but I'm just in need of quiet and find it hard to contend with commotion. 

Thanks for listening, because it does help to get it out. 

Smedley_Butler
Checking in

Karen, I have no words.  I can only say to prioritize and attack each thing one at a time as you can and have the time to.  You just have to let some stuff slide by and deal with it later.  I wish I could offer more, but that's how I'm getting through it and it seems to be working.  Has everything gone perfectly?  Oh, HELL no.  But I learned a LONG time ago to pick my battles.  The stuff that is important to me and, more important, the stuff that was and would be most important to Julie get my special attention and happen the way I want.  The other stuff is expendable.

Walt, hang in there.  Congrats on the good day and treasure them as they come and hold them close and take lots of pictures.  I SO wish we had had more good days with pics.  We had some chances we did not take advantage of and I will regret that for the rest of my days.  And for what lies ahead for you, the same advice as I gave Karen.  One important thing at a time.  As they get knocked down, the other stuff gets easier to face.  And yes, you MUST talk about the finances, final arrangements, and everyhting else NOW while you can.  Later will be SO difficult without having to try to figure out all that crap on your own.  We had aboutm90% of the funeral arrangments done and paid for, but there are still surprises.  But we had not gone over the house finances at all and that has been a chore.  She was an accountant and approached our houehold finances as an accountant would, not as normal people using Quicken would.  It would have been so much easier if we had taken more time to go over that stuff.

Well, tomorrow I go pick headstones and make the last arrangements then talk to Social Security and who knows what.  The Saturday will be the hardest day of my life as I have to finally put my dear girl to rest.

 

God, I miss her so.

 

Bless you,

SB

 

KarenS
KarenS's picture
You're right.....

Smedley, you're right about picking your battles.  I'm working my way through the top 10, and will get it done little by little.  I got my health insurance taken care of, which was a biggie..  so I can check that off.  I got the bills changed to paper, and am getting those done with balancing the account.  His social security, and pay checks are still coming in so I haven't had to dip into any invested funds.  Now to call the CPA, and Attorney tomorrow and see if I can straighten out the taxes or get an extension again. 

My days are spent in the hospital.  There's really nothing I can do, but talk to doctors on treatments and be a good advocate in his health care.  I'm watching over him, and am just by his side being supportive.  Hoping my presence is felt. 

I was thinking of you yesterday Smedley, and all the emotions you must be feeling taking care of your wife's final arrangement.  It's so difficult while they're ill, and even more so letting them go.  It's a healing process you'll be in after.  Everyone is different in how they cope through it.  I'm a quiet sort with this, and bask in trying to find some calmness.  Too much commotion (which the step-children brang during their last week visit) just wore me out. 

At first they wanted me to let him go, but honestly in my heart I did NOT feel it was time to give up.  That caused some mixed feelings.  The next day though after the Intensive Care Dr spoke to us about him, they all changed and also felt we should give him this chance to see if he could make it through.  It will be a very long haul if he makes it.  No one knows, and there seems to always be something popping up.  There is no real progress, he's just holding his own so far.  Trying to wean him off the sedations, and drugs...  so he's not delirius.  You'd be amazed how it looks like a drug addict withdrawing with sedations used.  I think everyone should check out this website ICUdelirium.org   You wouldn't believe how common it is, and we all will have been in the hospital sometime or another on sedatives.  They have actual patient videos, and also ones of a doctor viewing 3 patients in the hospital and how each is less coherent. 

One day at a time for all of us.  I try to get through it, and then through the next.  Thinking too far ahead makes me uneasy.   Walt keep getting as much time in as you can with the good days.  The boardwalk must have been very nice.  I hope you, and Smedley stay in touch here.  I feel a closeness with all we've shared with everyone.  Our Arizona sun may be cooling down soon.  I hear it's rain with lower temps Monday and Tuesday.  I may have to get a lovely walk in, and just breathe. 

 

 

 

WaltK
Insurance

Karen,  I am so glad that you got the insurance problem taken care of.  That would have been my biggest fear where the paperwork was concerned. I'm sure the CPA and the Attorney can guide you with those problems.

The drug withdraw is something you don't usually consider. When my wife stopped taking pain medication for a rod put in her hip because of the bone cancer, it took almost a month and she was taking small doses. I know it taught a lesson.

I hope you can get that walk in. I plan on taking a short trip in my boat this week to relax.

 

 

KarenS
KarenS's picture
Thanks....

Thanks Walt.  Yes, the insurance was a biggie.  Wish I could have gotten the same company with PPO, but HMO seems to be the way these health insurance companies are all heading.  I'll stay with PPO as long as I can find a company who offers it in AZ. 

I'll try calling the CPA today, to see if it's possible to get another extension.  6 more months should give time to see how my husband is, and then I can just get it all done.  Either way I'll get it taken care of.

My husband's test still show he has C. Diff.  They cut his Fentynol pain med down, and took him off of the Precedex sedation.  If he gets anxious they give him a hit of something but try not to run him on a drip.  He appears to look at you, and understand but we can't get him to respond to a command of sticking his tongue out or anything yet.  They are going to run the regular dialysis, and see if he can tolerate it.  Besides that, he's just holding his own...  no improvements. 

Glad to hear you're going to get out on your boat.  I might be up for that walk tomorrow if the weather is cooler.  This afternoon is my call day. 

I hope Smedley is hanging in there.  He has a lot going on with his wife's passing away.  We're all on this emotional roller-coaster, and I must say I'm ready to get off.  Taking it day by day.  ; )