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*sigh* My life has become Hell

KateNTx
Posts: 39
Joined: May 2011

Short story 31/f married to 64/m with Parkinson's Disease and Cancer of unknown primary. Both are being treated by the dept. of Veterans Affairs Medical Center. I am so damn sick of the run-around the VA gives that I want a second, independent opinion....problem...no insurance outside the VA, and the VA won't give us a fee-based consult with MD Anderson, instead, they just want to keep trying MORE meds, even though, by their own admission they have "never seen this before" and are not sure what it is. So far, we have done CHOP Chemo, Radiation, and now have started Tamoxil. (Last thursday), So yesterday night, my husband became delusional....off to local ER...no known cause for that either...so now I get to deal with THIS insanity on top of his physical illnesses. I am scared tyo death he is dying, because all I can find online about delusional states and Cancer indicates it as an end of life symptom...his family lives 16+ hours away, and they do not have a positive relationship, so I don't expect any help there, just demands for money/possessions. I have no family, so no help there either. My Husband does not want any outsiders (hospice/visiting nurse) at our home, and now he can not be left alone for even 10 minutes....I am IN HELL! Seriously...I almost wish I were dying just so my life could be someone elses' problem...oh, and btw...I am the legal guardian of my MIL who is 85 and has alzheimers...see what I meant about no family support?

Noellesmom
Posts: 1306
Joined: Aug 2010

End of life and delusional have some fairly specific causes: the medications your husband is taking could be the source this time.

Call the pharmacy with the prescriptions and ask about the drugs specifically and about potential interactions.

Let us know what you find out.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

My husband became delusional after being given dilaudid and morphine in the hospital. Meds are certainly a cause of having a "freak-out" as I called it. Double check with the pharmacist for the side affects of his meds.

As for no family support, I feel you. It was just me and Patrick. Your husband may tell you one thing, but may be more open to hearing another opinion from a doctor or someone going through something similar.

If hospice is becoming an option, please let him know that it means no more doctors, no more hospitals, no more crazy meds, no more appointments, everyone comes to him either at home or in the hospice facility whichever he chooses. Made sense to Patrick when nothing else did.

You have tons of extreme craziness going on. Sending all the love and happy thoughts I can.

April

KateNTx
Posts: 39
Joined: May 2011

Hospice is not really an option yet, his mass so far is isolated to his Lt. Axilla w/o bone marrow involvement or mets visible on PET scan. It seems like his complete disassociation was caused by exhaustion (he tries to do way too much immediately after Chemo) and dehydration. He may have a low grade UTI, as tonight he had a slightly elevated temp and his urine has been dark, although the sample taken at onset of delirium Saturday night did NOT come back w/any positive cultures. He is on long acting morphine, which may have contributed, but had been on short acting morphine for about a month prior with minimal neurologic effect.
The other issue with hospice/home health is that the VA basically requires you already be dead to qualify...not quite literally there but darn close. Since his tumor is CUPS, they refuse to provide a prognosis that would even attempt to get him hospice care, and until Saturday he was performing ADLs with minimal assistance.
Hopefully we will be able to see his Oncologist tomorrow (Tuesday) as Mondays it is impossible to get in to see her w/o being admitted or on the existing schedule, and my husband has been very clear that he does not want to be admitted. As a compromise we are staying in a hotel near the hospital, where I can rush him there if he gets any worse (our home is 2 1/2 hours away).

Today was better, after about 18 hours of sleep, he was more oriented as to who I was and only had about a half dozen short-lived delusions. He actually was willing to eat and drink some today although the chemo has made "everything taste like ****" to quote him. I would like him to drink more, but I'll take what I can get. I peronally am having serious doubts about this Chemo regimen, and if he reacts this way after the next round...they WILL try another one. I am not putting him or myself through this when w/o the chemo he was active, lucid, and relatively happy.

All my friends called today to check up on him, which made me feel less overwhelmed, to be sure.

Noellesmom
Posts: 1306
Joined: Aug 2010

Hospice is an option at times when you think it may not be.

There are non-profit hospice organization that may be able to step in and give you some help with this situation at this time.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hello Kate to you and your husband. Sorry you both have to be here, but this will prove to you to be one of the best sites to be at. I was a caregiver for my dad. He passed in March 2010 from Ec with mets to the liver. I have been where you are, and yes it is Hell. Thank God we did not have to deal with the VA. Why do they make is so darn hard for everyone? That is all I hear lately. The morphine and dehydration most definitely caused his disalusions. My dad could not take the morphine. Crazy stuff. Glad to hear he is slowly coming around now. The dark urine, I would be concerned about that. My dad had urine the color of iced tea. That is when we found out it went to his liver and he had a blocked bile duct. Had a stent put in bile duct, and all was better. You are on the right track, doing a wonderful job. Keep trying to get him to MD Anderson. I have only heard excellent things about them concerning cancer. Keep us up to date. We are always here for you and always praying. Power of prayer...it works!
Tina in Va

KateNTx
Posts: 39
Joined: May 2011

Today was better, only one really minor delusion early in the day. He had a lowgrade fever last night, so we have him on 500mg Amoxicillian 3xdy orally for the possible UTI (even w/neg labs the symptoms match so we're treating semi-prophallactically) the urine color is either from the Chemo on Thurs, or from the dehydration, kidney function/electrolytes tested normal, so thus far, no kidney involvement. He's extremely fatigued, and I have been forcing him to sleep more than he wants to. He still wants to go and do like he did when he was well. If his doc can't make time for him tomorrow, I'm going to the director of the VA and demanding he be sent to Anderson. I'm just fed up with the whole VA system, which feels designed to kill the patient and drive the caregiver completely psychotic! LOL I got some good sleep today while he slept, and am feeling decent again. My friends have stepped up nicely and are being supportive, although they still haven't stopped dumping their dramas into my lap and expecting me to react the way I did before he got sick. I try to care, but I get so stressed by the way they treat nonsense as life and death, that it takes all my limited self-control not to tell them off. I get that that drama is important to them, but to me it's moronic to care who is talking to/not talking to eachother when we are fighting for my husband's life. I don't say that to them, but there are times I really WANT to. I'm just at the point where I want to say to them, if you hate your life that much, change it. Seriously, leave if he is THAT bad to live with....if I had a choice to change the cancer suckage in my life, I seriously would, yet I don't whine and complain, I just try to change the part of my life I can. They whine and complain about such trivia...and Don't try to CHANGE any of it...just stay in it and whine to ME...as if I don't already have enough crap to cope with!?!? Don't get me wrong, I appreciate them still acting "normal" with me, but if ONE MORE PERSON tells me how strong I am, I think I'll slap them!
(Yes, I get how ironic my saying I don't whine is on a board where I have mostly whined LOL)
Love and prayer to all!
Kate

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

when I read this - I felt like I was reading one of my old posts.

Welcome to the "they don't get it" club. Suddenly, you are the one-eyed person in the valley of the blind.

I was very fortunate to have a friend who did "get it" - and she so glad she could help me back. I was there for her last year when her son committed suicide and was able to help because, unfortunately, I did get it. Not only did I have two other friends whose sons had committed suicide, but I had dealt with my brother through very dark depression and suicide attempts a decade ago and then my daughter's attempt two years ago. Oh, yeah. I got it.

She didn't have the cancer experience, but she understood how much priorities change when someone you love is chronically ill as well as the stress of trying to keep someone alive, and the daily fight against an unpredictable disease, and just how helpless we feel sometimes.

So, should you cruise around and find folks who get it? Probably not. But you might find that you don't waste a bunch of time on your current friends that don't get it.

Whine away to us, however. It's really good therapy and folks here are kind - I know I really appreciate the fact that I can absolutely wallow in self-pity during a post and no one (yet) has told me to get my big girl pants on and get over it.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Yes, you must push fluids or the chemo will be intolerable. This is a mundane tip, but my mother was able to drink/eat better if she sucked on a Lemonhead hard candy first. If her mouth felt sensitive she switched to a mouth rinse with Biotene (all drug stores have it).

These things really made a difference! If your husband's urinary tract is stressed, all the more reason to push fluids. It took lots of experimentation to find things Mom wanted to drink. She lost her taste for coffee, and ended up liking ginger ale, chocolate milk and hot apple cider. Go figure.

I've helped her through two years of intermittent chemo, and have learned a lot. Most of us know too well the feeling of listening to someone's daily drama and thinking, you think you have problems? You have NO idea...

Lisa4502
Posts: 7
Joined: Jun 2011

You don't need any advice from me. But feel free to whine, vent, complain or anything else if it makes you feel better. We are here for you and we know how you feel.
Hugs to you and just in case no one has asked you today.....................................HOW ARE YOU DOING? HOW DO YOU FEEL? HOW DID YOU SLEEP LAST NIGHT? HAVE YOU EATEN ANYTHING TODAY? CAN WE GET YOU ANYTHING..

LOL

Lisa

ButterflyLake's picture
ButterflyLake
Posts: 44
Joined: May 2011

I feel like you just wrote the thoughts I have in my head but don't say.

My ma is delusional now...we are waiting to see if it is medication-induced or a loss of competence. It's tough.

But, what really rang my bell is when you said you wanted to slap someone. I'm with you. I'm still the mother-hen for all my friends' "problems." There are so many days where I want to ask them if they're freaking kidding me, because I'd trade problems in a second. Then I remind myself that everyone is living in the innocence of their own experience, so I say nothing. It's all a matter of perspective.

Having said that...I'd like to see the look on my friend's face if I told her that I do not give a mouse's fanny about which of the twenty pairs of wedding shoes she should choose (out of twenty-billion e-mails she's sent me about it). I didn't care pre-catastropic-cancer-caregiver-situation, and I REALLY don't care now. Hmph. I just vented to your venting message.

Let's focus on what's important: Love and prayers to you and yours!

P.S. Is there a way to access hospice outside of the VA? I believe that all hospice centers are different, but generally where I live, they will accept a patient if the patient is not aggressively treating?

emtwoods's picture
emtwoods
Posts: 37
Joined: Jan 2003

I hear you on the VA, they are frustrating to say the least. In 1997, the VA told me my husband had Gulf War Illness that had caused him to have abnormal cells. They sent him home with a prognosis of 6 months to live. Fighting tooth and nail, and working with different Veteran's advococy groups even doing a road march from Florida to Washington DC with the support of Rolling Thunder. Finally, We were able to get him 100% Combat Service Conected Disabled Veteran which SHOULD bump him to the top of the list for VA health care. After a year or so and Michael was still alive, they told him they couldn't do anything until medical science caught up with what ever is wrong, besides admiting he was exposed to Sarin Gas in the Gulf War. I then went back to work so that I could provide health coverage outside the VA for him. The funny thing is me and the kids get Champ-VA but he does not because he is supose to use the VA. He is covered under MEdicare Part a and B but no drug coverage. Last year I could no longer afford to cover the family on my medical plan just so Michael had prescription so I opted out and got a 2100 FSA card. I figured that would cover copays and scripts for a year.

Just before Mother's Day Michael started having stomach pain he called the VA who said they would mail him a PCP appointment. By Mother's day he went to urgent care with his Medicare card. Since then he has had 3 surgieries and is on his 2nd folfox treatment. The VA schedualed him for his first PCP right after he got out of the hospital to have his port placed and he saw the VA onocologist last week. His last prescriptions were 1200.00 when he got out of the hospital. The VA said they would fill what ever the other doctor wrote but we will have to schedual an apointment and come in. This week was nausia medicine, by the time we get it from the VA he wont need it.

Lelia's picture
Lelia
Posts: 98
Joined: Jun 2011

Kate, how are things? Am thinking about you!

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