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Wouldn't You Know It!

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Now, I am sick. Started with the achy krap & fever yesterday afternoon. I left the hospital immediately and came home & went to bed. Alternated between fever, chills and dizziness all night. Drinking OJ right now. I really don't need this.

Hubby may come home on Monday with IV antibiotic, so I must get better. He had more fluid removed from abdomen yesterday. He truly believes he'll never leave the hospital and is suspicious of everyone and everything.  I sure hope this changes when he comes home. Maybe it's just the illness and meds.

Can't keep up with everything right now. Hope everyone is doing well.

Luv,

Wolfen

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I hear your pain. Unfortunately, I'm also under the weather. I found this old board floating by and grabed onto it. I hope you can find something to grap onto. Rick.

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

I'm so sorry you've got a bug....you not only don't need this right now, but it ain't fair!  I'm sure tho, that with all the stress, the lack of sleep, probably not eating good....that you were an easy target for any bugs floating around.  Hoping you recover fast.....glad to hear you went to bed.....rest is what you need to boost your staying power (which you have more of than any person I know).

p

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Wolfen,

 

Sorry about your condition.  Hopefully it will be very short lived and you will be feeling better at this time tomorrow.  Get plenty of rest and drink lots of fluids and all that other stuff you know so well.

 

Also, sorry about your Hubby’s woe, I just so much want him to have a good day.

 

Prayer warrior in Oregon,

 

Matt

Noellesmom
Posts: 1306
Joined: Aug 2010

Too much stress, too little sleep and an opportunitistic virus spell trouble!  You can catch anything in a hospital!

Hope you are feeling much better soon, wolfie!

Your husband has a slight, but deserved, case of paranoia.  Bless his heart and yours, too.

Maybe a little anti-anxiety medication is called for here, although it might make him sleepier than he already is.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Wolfen,

Ouch! What a rude thank you that mother nature has bestowed on you... she is a bit insensitive at times.

I too hope you are feeling wonderful today, and that it was one of those quick bugs that just passes throiugh.

So nice to hear your husband is going to come home tomorrow, and being as weak and ill as he's been lately, I can understand his apprehension with everyone. My dad was the same way when he got ill. I remember when I was recovering 9 years ago, it seems as if the entire world was spinning by me, people were like little tornados of activity, making decisions, whirling around me, and I didn't trust everyone either. They had stopped asking me questions.. and hey, I was the sick one! Once he gets home into your loving care - I imagine that part might calm down a bit, he'll be relieved.

I hope you can both get a little rest though. So glad your family is going to be helping you.

Big Hugs for a speedy recovery for you,

Kari

jim and i's picture
jim and i
Posts: 1652
Joined: May 2011

When it rains it pours. Praying you heal fast. Kudos to you for going home and getting into bed so you can be of use to hubby. We caretakers often forget we are no good to our loved ones if we don't take care of ourselves. Praying for hubby's spirits to lift.

Debbie

HobbsDoggy
Posts: 165
Joined: Feb 2013

I felt the same way as your husband for some time.  Found it very hard to trust and to be open.  Got much better as I improved.  Every set back brings out negative feelings.  I don't want them and always regret it as soon as I get feeling better.  Just can't help it sometimes.

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

wolfen, sorry to hear ur sick.  get as much rest as u can today so u'll be rested when hubby comes home tomorrow.  drink lots of oj and try to eat something too.  take care and know that u and hubby r n my prayers.

God bless,

dj

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I hope to hear that you are better very quickly.  Being sick is no fun and I know it's not convenient right now to say the least.  I hope your husband starts feeling more himself and less suspicious.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Wolfen,

I didn't see your msg I was away, I hope you feel better today and hope with all my heart that Dan comes home tomorrow! I am positive just being home and not in hospital atmosphere will improve his health! I pray for you both daily, you catching a bug was just God forcing you to take much needed and deserved down time, He knew you wouldn't have done it if He didn't let you catch something. Feel better sweetie your hubby is coming home, thank Jesus just for that news compared to where we were last week, tell him Rachel said "knock it off, the scare was a little dramatic, he already had our attention!"

Love to you both and God bless,

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

wolfen, how r u feeling today?  i hope u r over the bug and feeling urself again.  praying that ur hubby is do'n well enuf 2 come home today.  please let us know.

God bless,

dj

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I am feeling a bit better. I have never had a bladder infection before, but something feels wrong inside. I pee about every hour & then feel like I have to go again & there is a pain inside. So now, I'm on cranberry juice. I know you know this one. Everthing I eat tastes like krap. My doc's ofc. was closed, so I'll try in the morning.

The hospital was still trying to set up the in home antibiotics today, so we're looking at tomorrow around noon for discharge. Our son was with him today and he observed the same stubborn, nasty behavior I have been witnessing. He says his dad is acting like a child who refuses to take his medicine. He refuses to try when the ST is trying to give him spoonfuls of water. Just makes up his mind not to even try. Any attempt to help him or explain the necessity of something just falls on deaf ears. I wish I could force him to get some counseling or something. He just exhibits crazy signs like telling her that he would swallow water when he gets home and when she asked him how he was going to do it, he answered "It's a secret." I'm sorry, but this is not normal behavior. He has every right to have had a breakdown by now, but I am stymied. It's as if he's lost all reason. You can't get through to him that his recovery performance is somewhat controlling his release. I think he is convinced that my feeling ill is part of a master plan to keep him hospitalized. This is all just too crazy for me.

This is probably not a question that can be answered, but does this type of cancer ever affect someone this way. I would assume if you had a brain tumor it could cause this, but they scanned his brain in ER two weeks ago and nothing like that showed up. I am at a total loss & very frightened, not of him, but for him.

Will update when I have more info.

Luv,

Wolfen

HobbsDoggy
Posts: 165
Joined: Feb 2013

A friend of mine just gave up his fight and acted like your husband.  He did not want to try so got mad and child like if anyone press him to keep trying.  It was very hard to see, but his wife and the family tried not to jude, but it was almost impossible.  Not saying that is what is happening in your situation beacuase I don't know.  Just sharing what happened to me friend.

I admit to times when I think, even 4 + moths after treatment, that I wished I didn't make it becuase most days or at leat many I still feel bad.  Hope for future improvement keeps me going.

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Maybe that is what I am doing. Judging his actions when I shouldn't be. Even as a caregiver and extremely close to him, I am still not walking in his shoes, nor living in his head. Before cancer, even with his other illnesses, he was still able to do most things he had done all his life. Each day since this journey began, a little more wind has been taken from his sails and the ship falters badly. I am almost in tears as I write this. Maybe I expect too much. He is frightened. I am frightened. I see so many wonderful stories of survival, each with their own set of sacrifices and bumps in the road, but feeling sorry for myself, I see only unsurmountable boulders in our path. I've always tried to exhibit the "you can do this" attitude with him, when, in reality, maybe he can't do it. Wishing doesn't always make it so.

In any event, I will be getting better as soon as I see the doc today & I'm going to put on my hopeful face and march to the hospital and bring him home. At least he'll be with those who love him and maybe he'll find it in his heart to frogive me for judging him.

Luv,

Wolfen

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

wolfen, there is no forgiveness needed.  you are human and its very hard being a caregiver.  you've done nothing wrong.  and feeling sorry for yourself or overwhelmed sometimes is also normal.  you're allowed to do that.  don't beat yourself up, u r a great caregiver and ur husband knows that.  this is a tough road u and ur husband are traveling but u will get thru it.  i hope it will b better once ur husband is home.  take care and be nice to urself.

God bless,

dj

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Wolfen,

I read the line" and hope he can forgive me for judging him" and sucked air out of my lungs. You weren't judging him, you were taking care of him. When I was sick, my Mom was my caregiver because my new then,ex now, husband was useless(shoulda been a clue instead of 10 yrs w/him in hell..lol) and I hated my peg tube and had such food aversion if I saw it I was sick, I remember her many times yelling at me to eat peaches, she said if I didn't they were going to arrest her for starving me! I wanted to sleep all the time and she would drag me outside (it was summer) put me in chase lounge with a blanket and apple/water and make me enjoy the day. I yelled and screamed at her to leave me alone. I told her she had no idea what I was going through. You know what I was right, but I also didn't know what she was going through. What it was like to watch your child go through this, hearing someone you live for say they didn't want to fight anymore, never crying in front of me. Both jobs Cancer patient and Caretaker/giver are difficult, if not for the tough love and pushing of a caregiver most of us would not be here! We are the survivors, you are the Heros. Forgive you for what, Loving him, stop, you are a wonderful caregiver, you are trying to remind him who he is, cause in this hell we sometimes forget. Get your Hubby and bring him home, dust yourself off, you've done nothing wrong, if not for you he wouldn't be coming home.

God Bless love to you both, hope being home helps him be himself!

Rachel

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Wolfen,

My dear dear dear Wolfen, your job is to look and judge.. if you hadn't, he would have never gotten the help he needed when he was so sick with infection. It's part of the job. Being tired yourself and achy and worn out from handling this on your shoulders for so long.. no wonder it over lapped to the part where you might not have needed to.. it happens, it comes with the job. So don't beat yourself up over it.. you are my hero.. Just wish you felt better.

I know we only see glimpses... but I wonder if he just isn't terrified.. someone said "long term care", and maybe he thinks he's being tricked.. that will just about send any man nuts.. I have a feeling once he gets home, and sees that it's OK... Your husband will come back to you - he's just hiding.. when he can't exactly crawl under a bed to do so. Just my guess..

Meanwhile, treat him the same as you would have. And ignore the unwanted behavior.. no reaction, no gain for him. Might say I did that more than once in the last six months :)

Hugs and encouragement,

Kari

 

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

but there are so many times I wish this was a local board and we all lived close to one another.  I'm sure you hubby is scared...they put some of thatfear into him when they started talking about a long term facility.  Getting home, back in his own nest might be the ticket to put some of his will to live back into his mind.  As for his talking and saying weird things....that could be from laying down so much, plus all the drugs, dehydration, etc etc....the whole picture contributing to it. 

Go to the health food store and pick up some concentrated cranberry caps.....and then drink lots of water.  That's how I've beating all but one bladder infection.  I had to get drugs for that one, it was too advanced.  You'll get a lot more of the good stuff that cranberries provide doing it that way.

Wondering if you've got him home now.....keep us updated......I wish I could do more than just words.

p

Ladylacy
Posts: 491
Joined: Apr 2012

I know how hard this can be.  As caregiver to my husband sometimes it is like fighting with someone I don't know at all.  Have you and your husband sat down and discussed what he wants to do?  what his wishes are and how he wants to proceed?  

When my husband was first diagnosed in June 2010 with laryngeal cancer, Stage 3 but no spread, due to size of tumor, we talked about it.  Doctors were very optimistic since there was no cancer anywhere else.  He went thru the radiation and chemo without to much problems but did say he wouldn't go thru chemo again.  The side effects were horrible he said.  This is a man who always and I mean always did what he wanted to do without any problems.  Well when we found out the radiation and chemo didn't work he agreed to the surgery.  He came thru the surgery with flying colors and his surgeon kept telling us he was the posterman for this procedure.  Fast forward when he decided to have a TEP inserted.  Tumor was found at the cervical of his esophagus so no surgery only radiation and chemo.  He looked at me and I told him it was his decision and that I was only along for the ride.  He decided to go ahead with the radiation and chemo, which wasn't too bad.

NED in Sept/October 2012 but in January of this year we found out that the cancer has reoccurred and was larger than the first time but that it had spread to his right lung.  Now during all this time he had no problem other than swallowing which after a laryngectomy is very common.  He did tell me that he wouldn't do any further treatment regardless.  We did see the oncologist and he only recommended chemo which he told us wouldn't cure only prolong just like our H&N specialist told us.  Surgery was ruled out due to the spread to the lung.  Radiation was also out due to him already having the maximum in his neck area (70 rounds) over less than 2 years.  He has been adamant about no further treatment and while I don't agree with him, I abide by his wishes and so do our sons.  

It hurts to see him not able to do what he loves like working in the yard and building birdhouses.  Oh yes he tries and does a little at a time and then comes in and rests.  He doesn't complain about anything but I can see the pain he is suffering with.  Yes he has pain medication but I feel it should be stronger but he says no he's okay.  I have worried myself sick over him and his not eating and relying on his feeding tube until I just don't say anything anymore because it does no good and we end up being mad at each other.

After reading many posts on this site and another, I am grateful that he hasn't had the problems that some have had and I am grateful for each day I have him regardless of how hard he makes it and how mad he gets or I get.  We have been married for almost 51 years and together 2 years before that so it is hard and I realize will get harder as time goes on.  The doctors don't say how long but I am letting him do as he wants, not what I want as hard as it is.  I realize this is long and hope I didn't say anything to offend you.  Bringing him home is the best you can do for him and it is what he wants.  A promise I have made to my husband is that he will stay home.  During all of this be sure you take care of yourself too.

Wishing the best to you and your husband and family -- Sharon

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

The giant, complete with blood, bladder infection that I have. Not funny, I know, but I've got some horse pills for it.

Got hubby home in a taxi van. He has no strength at all. Can't stand. This will be a real challenge for a while. I'm hoping my grandson comes tomorrow. Medical supply has delivered a nebulator for breathing treatments & a suction machine to prevent choking. Oxygen is full time for now. Home Health is supposed to come & take care of IV infusions. I'm thankful for that. His discomfort comes mostly from bedsores on his rear which have worsened. The cream they were using did not help at all, so I am trying Desitin.

Thanks for your words of encouragement and kind thoughts.

MDA wants to restart chemo next Monday. They may change their mind when they see the shape he's in.

Luv,

Wolfen

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

hope the horse pills kick the crap out of your infections.....I'll bet if you had the option, you'd be able to pile into bed and sleep for a couple of days.

I feel horrible that hubby has bed sores, they are miserable.  Any barrier type ointment will work.....I wonder if putting Aloe on it first, let it dry then put on the Desitin?

p

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

It is hard seeing our husband's suffer so.  As hard as it was to admit David needed hospice, it was the best decision.  Everything else we could have done would have just prolonged his agony.  I am sorry to hear your husband's are struggling.  All we can do is love and support what decisions they make.  Those final few days with David were precious and I am glad I did not spend time trying to get him to do things that he feared or couldn't do.  We did not worry about those things, we prayed, talked and held each others' hand.  So no matter what happens remember the love and make that the top priority.  I am sending you the biggest hug I can muster.

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