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this one is from the caregiver....cant run away fast enough

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Posted 2/16/2010 12:37 AM (GMT 0)
I dont understand, I use to work as a hospice homehealth aide for yrs.....patients i cared for gave more respect and appreciation.

I am at a loss for words, I cant seem to do anything correct. I cant seem to give enough privacy, I cant seem to understand his feelings. Any way that I approach it, it's wrong. 

I suspected it would kinda be this way, be was somewhat hopeful that it would go better.  These next 10 days will be hell on earth.

I am sorry to have to vent, but I am tired of feeling worthless as a caregiver.

surgery went very good, stay at the hospital was difficult, he just could not relax. He expressed concern of the depression to the dr.

I mentioned the anger he was showing.

It's just not a good time, and staying away is so difficult to do.

thanks for letting me vent.

Patti with a sad smile :(  

Posted 2/16/2010 12:45 AM (GMT 0)
Patti,

Glad you came here to vent. I know you understand this is a tough time for him. I am sure you also know how not to internalize what he is saying as being against you. He is just lashing out at something he feels is just not fair.

You may need to give him more space. Don't smother him ( I'm not saying you are, but some men feel that way). He will have to work this out in his own way.

As a man I was somewhat in the same boat. Didn't want to be fooled with. Wanted to feel I was in control.

He will come around. Just reassure him of your love, and wait for him to ring his bell.

And you can vent here any time !
Posted 2/16/2010 12:58 AM (GMT 0)
Hi Patti,
I was embarrased to have my wife seeing me as a pee-soaked invalid with limp bits. I preferred to ignore the elephant in the room and keep things hidden.
It took me a couple of days to come around on my own. He will too.

Now the pendulum has swung the other way. Unfortunately for my wife I now have no shame and no fear of asking her to do things. (I think she wishes the pendulum would swing back a bit so I'd start wearing pants again.)

Patience, Patti, Patience. You'll both get it.
Jeff
Posted 2/16/2010 1:20 AM (GMT 0)
Towers, I'm not trying to run you off but rather offer support. There is a prostate cancer support group for ladies that may be able to offer support in addition to this site. My wife joined it and received good support. Google "prostate cancer forum for ladies". Best wishes
Posted 2/16/2010 1:36 AM (GMT 0)
Patti, part of it might be the pain meds, if he is taking them. My wife told me I was quite grouchy when I was first on them, and I would swear that I wasn't. I'll take her word for it! I hope things get better for you, and better for your "patient", too. I felt obliged to apologize to my wife quite a bit after the fact. It sure is a hassle having that darned tube and contraption tagging along everywhere you go.
Regards
Jeff
Posted 2/16/2010 1:36 AM (GMT 0)
Ms. Caregiver, hang in there. The world will change dramatically for the best once the catheter is removed.
Posted 2/16/2010 1:48 AM (GMT 0)

Im_Patient said...
Patti, part of it might be the pain meds, if he is taking them. My wife told me I was quite grouchy when I was first on them, and I would swear that I wasn't. I'll take her word for it! I hope things get better for you, and better for your "patient", too. I felt obliged to apologize to my wife quite a bit after the fact. It sure is a hassle having that darned tube and contraption tagging along everywhere you go.
Regards
Jeff

Similar situation here. My wife commented about my unusual outbursts and I realized that the pain meds were having an unwanted side affect. After discontinuing them I was back to my "lovable" self.
Posted 2/16/2010 1:49 AM (GMT 0)
I am sure you are being a good caregiver, so don't beat yourself up over it. A patient doesn't have the right to be abusive to their caregivers either, its a two way street. I was so thankful for the support of my wife (a nurse), and all my immediate family after my main surgery, and through all the corrective surgeries and setbacks I have had since. Couldn't have made this far without them.

Tell him ,I am on my 12th catheter in less than 15 months, spent the first 63 days after surgery on catheters, and have been on one continuous since October 1st of last year and still don't know when I will be free. So another 10 days might be unpleasant, but its not the end of the world. I use to think so back when I first got started with PC, but I have been through a lot since then, and have learned a lot too along the way.

I don't bit the hand that feeds me. I appreciate any of my care givers and my medical team.

David in SC
Posted 2/16/2010 2:04 AM (GMT 0)
Hi Patti

Glad you can vent about all this. There are a lot of things going on right now. It could be the meds or the Cath, I know that was the worst part of the whole process for me. He is just starting on this road and hope things will be better for both you and him. Keep you chin up and we will be here for the both of you.

Mika
Posted 2/16/2010 2:13 AM (GMT 0)
Patti i'm sure its not you its diffcult for us men to go thru this something like we lose something we will never get back, I'm sure he will be close to normal soon hang in
Deerhunter
Posted 2/16/2010 4:45 AM (GMT 0)
Patti feel free to vent here any time. Yes the Male Ego is greatly damaged with this surgery. Not makeing excuses just letting you know a mans point of view. He may or may not know how he is reacting to you. He is probably so wraped up in how to deal with all this that nothing else makes sence. He will come around. Just give him his space. Been there Done That!

Jeff T
Cajun Country
Posted 2/16/2010 4:55 AM (GMT 0)
For those that mentioned the possibility of pain meds, that's a good point. In years past, I would be given Tylox, or some of the other variations of Tylox, and anytime that I had ever been on it, my poor wife said that it made me very agressive (in a bad way) and prone to violent sounding outbursts. As the patient, I didn't see that or feel that (at least inside my own head). But I believed her 100%

Since then, we have put the Tylox class on a "blacklist" of meds not to take. During my entire PC journey, the only pain med that I have taken via a pill or tablet is the Loratab class meds. According to my wife, they have never made me aggressive or angry.

So it might be worth asking his doctor, assuming he is on prescription pain meds, if his reactions could be drug related in that sense. Worth a shot, and would be easy to resolve by switching to another class of pain med.

David in SC
Posted 2/16/2010 5:42 AM (GMT 0)
Hi Patti,
Your post tells me a lot about you as a person. First being a caregiver is tough duty. But it takes a huge heart. And to post your frustration tells me that it means a lot to you to make a difference for someone else. I don't have magic words. The guys have said it well. Some guys just have a hard time accepting help from others, and it's usually their own frustrations with their plight.

Patience will go a long way. i have seen the toughest guys change from this disease and I have seen the easiest tempered get frustrated at times. your good intentions will come through, however. How could they not? Hang in there...

And may peace be with you...

Tony
Posted 2/16/2010 6:05 AM (GMT 0)

If he acts up again, give him a wedgie.

He will NEVER act up again.

Mel (sorry, couldn't resist)

Posted 2/16/2010 7:52 AM (GMT 0)
Well done being a carer however bad bits of it are at the present time. Get under the shower and sing loudly or something like that if venting here isn't enough.
(One of my sisters is a hospice nurse and my late mother also a nurse had specialist training in care for the dying, and was my dad's carer for years - and he, as a doctor, hated needing to be looked after.)

Definitely check the meds though. Another sister and her husband (who has PCa) had a really bad time till he changed his meds.
I only took prescription meds while I was in hospital i.e. one the evening after, one the morning after and one the next evening before I left. They gave me a script to go to the pharmacy at home to get more, but once home I just used over-the-counter paracetemol and I was okay.

I forced myself to take things quietly, though not quietly in all senses as I loved sticking in the earphones and listening to music I hadn't listened to for years.
I also used loads of extra cushions etc to make myself a comfy nest to sit in when not walking around, as it was actually possible to find positions where nothing hurt.

And there's comfort food as well. I ate chocolate.

I always try to tell myself that it's fine to think about a problem but bad to worry about it, but it's a fine distinction.

All the best

Alfred
Posted 2/16/2010 11:35 AM (GMT 0)
Dear Patti,
I rarely give advice - the reason being that I just can't trust myself to not at times make it biased, so I avoid it. But your post struck me, so I thought I would share some ideas on angry and traumatised men who I have loved. What you describe is raw anger resulting from immense grief and pain (emotional and perhaps as other mention, other reasons) I think. However I look at it, it is temporary to a degree... I know this as I have another person in my life (perhaps my best male friend apart from hubby) who is often perpetually angry. For 23 years I have been a close friend of his, and he is now a godparent to one of my children. He has a massive physical disability resulting from an accident 23 years ago so, I know a bit about being with a friend prone to frustrated anger for a long, long time too.

I agree that this is a direct result of the trauma your hubby has experienced with Pca, and hopefully it will ease, but it may last for some months, so try to stay strong, and/or give yourself some time for rest too. Perhaps since he (your hubby) is healing, you could organise to give him some space? You could still be around if he needs you, but just not too visable or in the same room for example, and tell him why. I do think it is important to be honest. Be there, but not be there sort of. All of the above suggestions from others are also excellent. Including the prostate ladies forum which is a lovely forum too which you would be welcomed most warmly to if you decided to join.

As a woman, I am no man expert (!) , but I sometimes reckon men just need to be left alone to be angry sometimes, but they also need to be kept safe too. It is a double-edged sword I know, but hang in there, and try not to expect the worst. Above all don't run away Patti. He does sound like he needs you, and visa versa. Good luck and take care. Lana
Posted 2/16/2010 12:42 PM (GMT 0)
Patti, my heart breaks as I read your post...do not discount how you are feeling for you too are a "victim" of prostate cancer.

My husband, who is one of the most gentle and even-tempered men I know, turned into a bit of a beast right after his surgery. Getting him into bed (and then out) was one of the hardest things I had to do - not because of the physical exertion but because of the emotional eruption that would come out of him. While he was not critical of me, he would breakdown and cry because he just couldn't understand what was happening to him. I don't know how much fear played a role in all this - all I know is that he was not the man I had been married to for 27 years. It wasn't easy to deal.

Patti, if you are interested in chatting live, let me know. Somehow we'll hook up by private email or by phone. I'm here even if only as another shoulder for YOU to lean on.

Hugs and kisses from New York.

Sephie
Posted 2/16/2010 3:40 PM (GMT 0)
Patti, as was said, not wanting to lose you, but here's a link to some women's forums and info. that may help you in your struggle. You can go there and stay here, so get the best of both worlds. smilewinkgrin The first link in the post is the Ladies Only Forum, that several here says their wives found useful. Please stick with us, even if you go there, as we care and want to be a help to you also.

www.healingwell.com/community/default.aspx?f=35&m=1584686
Posted 2/16/2010 3:45 PM (GMT 0)
Patti,
Vent away. And please remember, you MUST take care of yourself. You are no good to anybody else in your life who needs you if you sacrifice yourself to him. It's perfectly OK to call him on his behavior. Whether it's the meds, his own issues, pain or whatever. Keep your boundaries intact. He is a big boy and what he is going through does not give him license to treat you badly or rudely. Maybe I am less sympathetic than others on here, but he must be responsible for his behavior. Give yourself a break - especially if he has an outburst or mistreats you. Leave the house for several hours - and tell him why you are leaving - then go do something for yourself that you love to do. He can be on his own for a while. I forced my wife back to work after two days.
YOU are the most important thing to take care of.
Paul
Posted 2/16/2010 4:08 PM (GMT 0)
We can be very stubborn, some males think they are tough and don't need help or want it. Just have patience he will come around. This is a great place to lean on people for support.

Best wishes to both of you.

Neal

Posted 2/16/2010 7:19 PM (GMT 0)
I can't help but be impressed with a bunch of guys all dealing with their own aspects of this disease taking time to reassure Patti.

Patti, this thread alone should help you see that the anger/unhappiness won't be forever.

Hopefully you can hook up with Sephie, or one of the other wonderful woman members of our group.

Good luck, and keep the faith !
Posted 2/17/2010 12:04 AM (GMT 0)

Patti

I am usually a pink cloud kind of guy somewhat A.D.H.D but during the immidiate post-operative period I would not be going out on a limb to guess that my wife had more than enough quality time with me.  She was the best, I was the worst. Somehow she has forgiven me for my demanding disposition.  Best of luck to you and yours.

Hero

Posted 2/17/2010 2:13 AM (GMT 0)
thank you all for the reassurance, certainly things will get better.  I believe Karl is feeling less pain, is changing from big bag to leg bag more easily.  He has not spoke to me the last couple of days.  I am keeping busy with the young ones, keeping distance.

He goes back to Palo Alto week from this Friday for removal of foley bag. Maybe things will get better then.

As for the pain med possibly altering his behavior, possible, he was reluctant to take it, didnt like how it made him feel. But, it did help with the discomfort, so he has been taking it (vicodan).

I hold on to the good news the doctor gave me after the surgery, "it all looked good, prostrate just slipped right out, looked very good."

I will ck out the women's forum, thank you for directing me to the site.

 

Mel, if I could give him that wedgie....i would!! LOL

 

again, thanks for the time you have taken to comfort me, advise me...it is very appreciated.

 

This too will pass.

 

Patti

Posted 2/17/2010 3:11 AM (GMT 0)
patti,

as you can plainly see, we are here to support our "sisters" as much as our PC brothers. Like many medical matters, people sometimes forget about those on the other side of the ailments, the family members that act as caregivers ,etc. With all I have been through, i am very concious of the hell I know my poor wife has been put through. when i had been going through some of the terrible periods of pain a few weeks ago, it just kills her knowing that there is nothing more she can be doing for me, and that she hates to see me suffer. I would feel absolutley the same way in reverse.

what i try to do to help make up for it, when she comes home from work as a nurse, i try to have it where she never ever has to do things like housework or laundry, etc. least that will help make her struggles and sacriifices worth it. when she is at home, she can have time to enjoy the things she likes to do too. i just feel that fair is fair in a situation like that.

hopefully things will continue to improve on your home front, and with karl. as he physically heals and improves, hopefully the attitude and mental distress he is feeling will improve in your favor as well.

just remember, we are honestly here for the both of you.

david in sc
Posted 2/17/2010 1:23 PM (GMT 0)
Patti, you sounded better in your second post, and I'm happy about that. I had a thought about our men and why they may behave the way they do. Prostate cancer surgery is in direct violation of what society tells us constitutes a "man". Standing at a urinal is replaced with peeing in a bag; boxer shorts are replaced with briefs because they hold the incontinence pads better; spontaneous erections can become a thing of the past; finding out where the bathrooms are almost everywhere you go. Life changes after prostate cancer surgery and some men have a harder time than others making peace with their situation.

I believe that your dear husband will come to terms with his situation, and will realize how very luck he is. Stay with us, Patti, and keep us informed please.
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