One patient with glioblastoma still alive nine years later
by gothisback on Sat Sep 25, 2010 03:59 AM
I miss the man I married! This man I am caring for looks like him but isn't anything like him. The man I married was kind, loving, generous, thoughtful, etc. I know it's pain, the disease, all the meds, anger, etc but he is so rude and thoughtless with his words. Very hurtful! I don't know how much more I can take. How have some of u done it? WHat do I do?
by jcassick on Sat Sep 25, 2010 04:13 AM
Take a deep breath.
If you know it is because of pain, then let it go. Not easy, but do your best. Reassure him that you are there to help. If he does not have food restrictions, then try to bring him foods he enjoys, that are also healthy. If he has outside friends, have them come over if possible, or at least call and chat about the old days. Watch only comedy television programming, turn off the negativity. Just look at him and smile and be glad that you have him for another day.
Remind yourself over and over again, what would he do, if you were the one who was sick. He would be there no matter how rude or thoughtless. He is scared. Find ways to be there and just listen. There is nothing more powerful than quiet time, just holding hands.
Hold in there. Not sure what cancer your husband is battling, but finding specific support for the type is a good start. People with insight into specific cancers can help you deal and understand.
Best wishes on your journey, Joanne
by Proxielocks on Mon Sep 27, 2010 11:38 PM
On Sep 25, 2010 3:59 AM gothisback wrote: I miss the man I married! This man I am caring for looks like him but isn't anything like him. The man I married was kind, loving, generous, thoughtful, etc. I know it's pain, the disease, all the meds, anger, etc but he is so rude and thoughtless with his words. Very hurtful! I don't know how much more I can take. How have some of u done it? WHat do I do?
On Sep 25, 2010 3:59 AM gothisback wrote:
I understand completly what you are saying. My husband is a very caring, kind loving man. However, when he got throat cancer and with having the radiation & Chemo treatments and all the medication Andy got very angry. He would say to me, I should have NEVER taken the treatments. He would say that if he had known things were going to be this bad I would have rather just expired, this is the word he would us. He would say other hurtful things too.
However, I knew that he really did not mean what he was saying, he was just so darn angry and tired of the hurting and the pain.
The only way that I could deal with it, was to just leave the room where he was and go to another room. Yeah, I would cry but I knew he didn't mean what he was saying. Geez, we had just got marrried a week before he started his treatments, even though we had been together for 5 1/2 years. When we took our vows I meant what I said. "FOR BETTER OR FOR WORST IN SICKNESS AND IN HEALTH." I was crying like a baby when I had to repeat those words..
But God is great and God is powerful and he never gives you more than you handle.
By leaving the room, I think it prevents you from also saying something you don't mean to say. At this point you don't want to hurt the person that you love when you know they are going through the worst thing in their life. Just try it next time.
God Bless You,
by Roselvr on Tue Sep 28, 2010 01:42 PM
Just looked at your profile - My husband has end stage non small cell, squamous lung cancer mets to bones, liver and possibly the brain. He's stopped all tx now and we've called in hospice. Still praying for a miracle!
I don't know why some patients get like this and others don't. My dad never lost it; which is a miracle especially since he had 1 daughter write him a nasty letter & another confront him. My dad was terminal.
My hub oral SCC had a lot of really bad times. When an "episode" is happening; you feel so alone. You know it's the disease/meds but it's hard to tell yourself that. I used to walk out and take a shower; locking myself in the bathroom. One time I took a ride to go shopping. Had my hub not made it, I did not have any good holiday memories to hang onto; anniversary, Thanksgiving, Christmas. I don't want to go into detail on a public message board but I will tell you that he is now 9 months out and remembers NONE of it.
Try to enjoy the time you have left. I know it's hard. Instead of living day by day, break it into morning, mid day & night. Maybe things won't be so bad that way; and it may allow you to wipe the slate clean when the clock hits 12:01pm.
Come back & vent if you need to.
by ginag72 on Wed Sep 29, 2010 05:03 AM
Please hang in there. You have a soul sister out here. This is exactly what I needed and the reason i looked up the site. i know now that I am not alone. My Dad has stage 4 lung cancer and we just today called hospice. He can be so mean and hurtful to me. He really hits below the belt anytime he can. But when my sister or other people are there he is laughing and joking then turns Mr Hyde the minute they walk out the door. I have been his only caregiver through everything. I am tired and scared and just a little bit resentful of him. Then I feel guilty that he is so sick and I'm "mad" at him. I don't know how to cope anymore. I never thought at 38 years old we would be here!!!
by DaddyPops on Wed Oct 20, 2010 04:21 PM
I could have written your post, other than the fact I am a husband who misses the woman he married...she was find, loving, generous, thoughtful, always there for everyone including myself...those days, that person seem but a distant memory, kind words replaced by mean spirited, self centered, angry words that cut like a knife, slicing up my heart at every turn as I recede further and further into myself, cowering in fear at what comes next, wondering when the next verbal assault and onslaught is going to occur.
In some ways, one would think my own wife was/is lucky in that they caught her own breast cancer at stage zero, but other complications make it not so simple.
A) She was diagnosed with breast cancer at the age of 53...the same age her mother was when she succumbed to cancer and died...loaded emotional issues.
B) She already had female issues...fibromyalgia, endometrios, and as we would learn, estrogen dominant which meant some seven months after her radiation a full hysterectomy (cervix, ovaries...they took it all) which threw her into instant menopause.
C) They are watching her closely because of other things that could/might be cancer...the tests and doctors visits are never ending it seems.
D) Let's throw in panic attacks...especially since today she had a panic attack while in the MRI machine...so, the MRI was not done, and MRI that was supposed to check for Abdominal Lesions.
Imagine sitting in the car on the drive home with her at the top of her voice screaming, "I can't do this any more, I GIVE UP."
This instances are usually followed up with a hallow sort of an apology, a "It's not you" attached to it as if that is supposed to make it all better, ease my own hurt and pain, alleviate my own fears regarding what they were looking for that can now not be found till some other means is worked out to get her through the test.
Not sure knowing there are others out there in your situation helps...but it is true...I understand that simple sentiment you speak. "I miss the man I married!", as I miss the woman I married, have had to accept that she is gone forever, is not going to return, and I now have to figure out what I am going to do.
Some people say we are just tired, that a few good nights of sleep will somehow make it all better, will give us the strength to somehow DIG DEEPER, be MORE TOLERANT, more understanding of what our spouse is going through. I wonder...isn't the first rule of life saving something like, "don't let them take you down with them?"
I sleep on the sofa. I spend way to much time on the internet, as it is my only escape, my distraction from a situation that has become intolerable...it's as if the woman I loved is forever gone, never to return, a evil twin look alike in her place that I am supposed to watch over, perhaps even watch die. There is not making love, few if any tender moments, and that occassional moment of tenderness is far too quickly erased as the monster quickly raises its head to snarl at me, strike yet another and another blow as I am attacked for some alleged wrong I have committed, or perhaps just on general principles.
I am bitter, angry, hurt, perhaps even broken...find myself in a trap that I cannot get out of.
We are caregivers...
What if we leave, say, "you know what, I have HAD ENOUGH of your crappy moods and mean spirited ways, and want a divorce." Can we say GUILT, SHAME...OMG, every one of the friends we have (or had) would shun me forever, wonder what kind of an evil soul could abandon their spouse in this moment of crisis in need, whisper behind my back about the cold callous act I had done in throwing her even deeper into the black abyss that is her life.
Be strong...yeah right...sure you already know that there is only so much energy in our batteries, only so much internal fortitude we can reach down and find. If you are like me, you find yourself wondering just how much longer you can continue to be brave, wonder just how much more verbal and emotional abuse you can withstand before you reach your own breaking point.
Wish I had some magic wand I could wave to make your own situation better...I do not. Wish there was some magic elixar I could offer that would make his words hurt less...I do not. All I can offer is a hand in friendship, a ear (speaking figuratively) that you are welcome to bend in the hopes tha venting might at least release some pressure, give you a much needed break, perhaps a feeling that someone understands.
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