Topic: anyone exerence personality changes long before diagnosis?

My husband Rick seemed to change emotionally , as near as I can figure, around 2005.  It seemed to come on gradually, he was disconnecting and  very distant.  I blamed it on the possiblity of male menopause, mid life crisis, whatever. We had been married 22 years by then, and i thot I knew him well.  But he as emotionally void.  I cant really explain it. Finally we went to counseling, and again, non participant. I tried to be close with him but he just was not "there".  I felt very threatened but just did not know why. Then he started to age fast, and get tired alot etc.  I knew something was wrong and he did get a physical and passed.  (How they palpated his abdomen and missed a 15 cm tumor I just dont know, I could feel it myself)  He died the first of this year, and I never saw the old Rick again. I wanted to cherish our remaining time but he seemed unable to ...feel, for the lack of a better word. I wonder if anyone else has gone thru anything like this. I feel like I lost my husband long before I actually experienced his death. I do believe it was the cancer, I found no evidence of anything else.  The timing was right, but I am still confused about it. So I focus on thought of the normal Rick who was a bunch of fun almost my whole married life. But the last few years I was married to a stranger.

Re: anyone exerence personality changes long before diagnosis?

My Husband Jon died in Dec 06 , He was diagnosed in March 06 and they told us he had probably had the cancer for about 2 years going on the size of the tumor. When I l think back to that time I can see that there was something going on , he became tired very easily and did not want to socialise as much as usual and looking at pictures now I can see it in his eyes , which I did not notice at the time.

Alison

Re: anyone exerence personality changes long before diagnosis?

Hya robyn and alison.
I also noticed a difference in Alan.
Alan passed away in April 2006 however in February 2005 our middle son had the mumps very badly.

Alan  also had them within a few weeks. During 2005 his partner dina now tells me she would often go to work as she is a dentist and alan would still be asleep when she came home from work. This was on his day of when he had to work a weekend. She lost her dad in August of that year and she started to get impatient with him as he was tired all of the time and she could not believe someone would sleep for such long periods.
I asked him round about december of 2005 was he anorexic as I felt he was losing weight. His reply to me was that whilst he had the mumps earlier in the year he had lost weight and had struggled to regain it. He assured me he had regained his normal weight. He never carried a great deal of fat as he was very muscular. Looking back with hindsight, I realised he was eating an enormous amount of sweet stuff. He, like myself had a very sweet tooth but again dina said he would polish of anything sweet in the house whether it be breakfast, lunch, dinner or anytime really. It was as if he could not control it. He also told me the pain in his back, under his left shoulder blade that started during late December  was almost identical to a pain he had when he was in New Zealand in 2003. At that time he thought it was due to sleeping in a car or caravan whilst they were travelling around.
I suppose it is with hindsight we become aware of some small changes that do not appear to be significant at the time.
Hopefully, sharing these thoughts may enable the medical profession to  get a handle in some way on some of the symptoms that our loved ones portrayed prior to being so very ill. love and light Alan's mom

U.K.Member

Re: anyone exerence personality changes long before diagnosis?

I think that if we all looked back to the months prior to our diagnosis we probably would notice changes.  I certainly did, no energy, bad mood, but I put it down to menopause and the need to get off my butt and exercise.  Were these symptoms?  Maybe.  Should or could I have done anything different, I'll never know, I even went to the doctor the day before I was hospitalized and we both put my feeling lousy to a stomach virus.  That's the problem with this disease, there are no definable symptoms where you can say, I need to get tested, there aren't even any tests.  So, instead of the shoulda, woulda, coulda, I prefer to look forward and concentrate on what I can do now.

Re: anyone exerence personality changes long before diagnosis?

My personality has changed so much.  I look at just about everything differently.  As much as I push and try to remain positive I sense a little withdrawal from interaction with my family.  We have discussed my feelings and have had great support from my family but I still have to keep realing back the closeness and family love that I want.  Another part of me wants to stay low key and isolate and wierdly put distance between me and my family so as to maybe make it easier when they day comes.  It is so mentally challenging to plan vacations or other events, especially long term plans as I don't know what the future holds.  My changes seem to have begun after diagnosis so very slowly.  Then when the decision to begin chemo things were really a rollercoaster.  I have had to pull myself up out of the darkness so many times.  It's like one of those television commercials for depression,(it hurts).  It's like a cycle of emotions low then high.  I've read a lot about this subject and it is considered normal but does take a toll on your loved ones as they are hesitant on how to respond from one day to the next.  Now that I'm seasoned, it is getting to be easier as I'll now say lets make plans, lets go do this or that but I do so openly with the understanding that if my health declines to the point that I'm unable to follow through we'll just have to reschedule or whatever.  I guess you would call this a form of adaptation. Like I'll stay at the hotel and nap while they go to the pool or maybe I'll be the first one in.  It's an arkward way of living but it's living and enjoyment just simply watching the ones I love have fun.  Even if PaPa can't do the big ole cannon ball splash anymore it is fun .  Hope, faith, and love will see me through to remission or in to God's eternal peace.  So each day I'll try my hardest to be happy and continue living with my family!  There is a reason for all of life's events irregardless of which direction the road will go.  Smile be happy to the most extent possible is my mind set now-a days.
God Bless to All!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: anyone exerence personality changes long before diagnosis?

Definitely there have been changes. I could probably blame them on most anything, but the increase in fatigue, and a dramatic increase in social anxiety have concerned me for years. I didn't even think about it being the cancer. I wonder how long he's had it, because it's been about six years since he started really having anxiety issues.

The biggest change in Scott, I feel, has come from the xeloda; the cancer treatment. It seems to suck the soul right out of the man. I don't like to leave him alone, and it's all I can do to convince him to keep breathing.

Brenda

Re: anyone exerence personality changes long before diagnosis?

My husband was diagnosed in Jan 2007 and passed away in Aug.  He had major personality changes as the cancer progressed and as I look back on it , I do believe these changes had started well before we knew anything was wrong, but his father had passed away unexpectedly (at age 84) and so I chalked it up to coming to grips with his father's death.  I noticed some weight lose and that he had stopped his daily routine of running several miles, but he kept telling me it was just stress.  I finally got him to go in for a physical in Oct. 2006, but he passed with flying colors and the doctor also told him that he thought the weight lose was just stress.  He wasn't eating good and was very tired, it wasn't until he had severe abdominal pain in Jan 2007, when we took him to emergency that discovered how sick he was.  He was always very mild tempered, very layed back and easy going, but he had a major personality change and became very demanding and difficult.  It was explained to me that with this disease tocins build up in the liver and cause something akin to an insulin reaction.  The doctor prescribed Lactulose, which is the consistency of thick syrup (and he hated it) but it did help.  I am still struggling to get past our final few months together because I too Lost my husband shortly after he was diagnosed.  My children struggle with their last memories of their dad because they kept saying to me "This isn't dad!  What's happening?" 
I wish you well and all I can ay is keep trying to hold onto the memories of happier times.  This is such a nasty disease and my heart goes out to anyone who has it and to their families. 
My prayers are with you.  LD

8 (edited by JeffG Tue, 12 Feb 2008 16:51:39)

Re: anyone exerence personality changes long before diagnosis?

Hi LD,  The word struggle seems to follow this CC everywhere.  My wife and I was just talking the other night about the best way to explain to the grandchildren of what is going on with PaPa.  They were asking why don't he play with us anymore?  I got a little choked up about it As it was I that taught them to rough house and wrestle and now I distance myself and make excuses of not feeling good.  The last thing I can remember is teaching my grandson how to ride is bike.  Oh, how proud he was!  They almost had to call the ambulance as I was so out of breath and weak from doing it.  I'm kinda stubborn in that way.  After reading your post it dawned I can still do things just less physical.  Tonight is fun night.  Thanks again for posting.  Sometimes members post something and it makes a bell go off and makes me ask myself questions.  A prayer of support coming your way for you and your family.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: anyone exerence personality changes long before diagnosis?

i think the cancer makes us tired which of course effects personality- i was always so bubbly- in fact, that was my nick name- bubbles-  so when i started to slow down- i assumed it was my age.  I choose to enjoy each day as it it was my last- i appreciate all- even a pretty bird, but i do have my poor little me days- then i kick myself in the $%@ and smile- you are ALL winners- just by being here- pat your selves on the back

becky
blessed are those that are cracked,
for they let in the light!

Re: anyone exerence personality changes long before diagnosis?

LD
Thank you for the insight.  My husband has become very "grumpy" lately and I know he is going through so much.  My heart breaks for him. 
Karen

Wishing all God's blessings!

Re: anyone exerence personality changes long before diagnosis?

Karen,

All of our hearts are breaking. This disease and the treatment is so intense. I know you are going through just as much as his caretaker. My prayers are with you and everyone else on this site.

God Bless,

Brenda

Re: anyone exerence personality changes long before diagnosis?

I asked my kids if my personality had changed and they both said that my temper was sharper.  I think in my case, it's the stress and pressure of dealing with this disease combined with the normal stresses of single parenthood.

Re: anyone exerence personality changes long before diagnosis?

I noticed that my husband bacame tired more easily. All our married life we had sleep patterns that were very similar; if I got tired in the afternoon he would also be tired and have a nap. I said to him 'You're sleeping a lot.' and he dismissed it but I thought to myself 'I wonder if it's cancer?'

He also lost weight on his buttocks which I noticed and thought well he's getting on and older men lose weight on their behinds! Last week I looked at photos which were taken three or four weeks before his diagnosis and before any symptoms. I can see that he has lost weight and also the photo is of the whole family at the dinner table and I can see that he is somewhat removed from us all.

My husband became quite angry with me in particular and was sometimes horrible to me, not shouting or cruel but ungrateful and unpredictable. I haven't read about this on this board before, I suppose we carers feel guilty about saying negative things about our loved ones when they are so ill, it's not really acceptable. 

I think that we cannot know until we are there, what this whole experience means to a fit and healthy person -suddenly facing the end of life. There is so little hope for most people who get this illness, compared with say breast cancer or colon cancer, that it is not surprising that a life changing revelation should produce a personality change.

Re: anyone exerence personality changes long before diagnosis?

Patricia, I hope you're getting along well.  I went back and read the posts about your husband.  I'm so sorry.  I agree with the weight loss.  Charlie says he's back to his normal weight, but he still looks smaller to me.  Could be I'm just getting bigger - I stress eat!  Charlie also naps and rests a lot.  He's still here and I'm so grateful.  But then it's almost like a grieving process, thinking things like - will we ever be ever to hike again, even walk for 30 minutes, things like that.  Then, I feel guilty that I'm one of the lucky ones and still have my husband.  How can I complain??  You're 100% right.  Caregivers feel guilty saying negative things and it's not acceptable.  Sometimes when we have family gatherings, he'll pull back a little and be quiet I've noticed.  We've dealt with anger issues too more so last summer.  I'm sorry, I draw the line there, I can put up with a little anger, but if it goes on for days, it really takes a toll on me and the kids and I would just rather him not say anything than to be mean.  There I go again saying unacceptable things...

Maybe we caregivers need our own spot to vent so we won't sound so horrible to those suffering with this disease. 

Carol

Re: anyone exerence personality changes long before diagnosis?

Carol and Patricia-It is a relief to me to hear you say these things as I am always hesitant to bring up anything negative because I have come to love my chat room family and don't want to offend anyone.  Dave has developed a short fuse but is not really angry but I feel guilty when I feel so sad that our life will probably never be the same again.  I miss my husband as now he is so much my patient and I am now responsible for everything in our lives as he just can't do anything anymore.  Then I feel guilty for even carping to myself about that.  It just sucks for everyone involved with this horrible disease, but it sure sucks more for Dave than me I'm sure.  Thanks for bringing this up and letting me vent.
Patrice

Re: anyone exerence personality changes long before diagnosis?

Ld,  that is the same with my husband.  I feel I lost him way before the cancer diagnosis, and it was more than fatigue etc.  His whole personality changed, and not for the better. I can seehim being angry and bitter after diagnosis, but what about the months before when He would look at me almost with distain, like I was an enemy.  A friend of mine said "What do you think you could have done to make him feel disconnected?'  My reply was I did not know  ...but what did the dogs do?  He was the same with the animals, always loved them,and they gravitated toward him. He was loved by the cats too, and you know how hard cat love is to attain. But during this process, he neglected the animals emotionally also.
I also understand about the shrinking.  My husbands butt muscles started to atrophy long before we knew about the CC. And then the power naps.  We wrote all that off to aging, but sometimes I noticed his facial color did not look right. I reminded him to tan one night, saying he looked whale belly white. (oopps) I even mentioned it to the counselor I made him go to. What a waste that was.
Even when we found out about the CC  it was still hard to cope with the empty man vs that loving husband I spent so much time with.
Thanks for sharing all this with me, it helps to know that there is no blame.

17 (edited by Lisa Sat, 16 Feb 2008 10:38:05)

Re: anyone exerence personality changes long before diagnosis?

As a single parent, I've tried very hard not to let my emotional reactions to this disease spill over onto my children.  I try hard to be the same mom that they've always known.  Their father hasn't been in their lives for the past 13 years, so it's been up to me all this time to provide the safe home and provide for their needs.  It's very scary for me to contemplate what will happen to them should I die, so I have resolved to fight this disease with all my power.  The power of prayer is sustaining me, both my prayers and the prayers of friends and family.

Sometimes I wish I had a husband to help and be the caregiver.  Then again, why would I wish such emotional trauma on one I love?  Thanks be to God, I have remained mostly healthy the past few months.  Yet I don't want to burden my children or my parents with my care, so I have to remain strong.  The emotional strain can be quite overwhelming at times.

Re: anyone exerence personality changes long before diagnosis?

Perhaps we do need our own vent site. We have our own, unique issues that are separate from our loved ones: grieving, anger, depression, anxiety, relief, guilt.......not to mention dealing with our loved ones' grieving, anger, depression, blah, blah, blah......

But, perhaps we need to keep it here and just treat it more matter of factish. These emotions are part of the package. I am going to feel depressed. I am going to feel guilty. It's natural to feel resentment, anger and grief at loss of personality and life style.

Yes, yes, yes, I have all of those feelings and once I recognize them, I can more effectively deal with them. I can see that the pig mire my head is shoved into is depression. Yes, I'm going to feel snide at the woman complaining on and on and on, that her daughter has diabetes. I have issues. I'm screaming inside and it's eating my brains to get out. No, I'm not ok, but I am more ok when I recognize my emotions as being predictable, anticipated responses to hellish circumstances.

My point is: this is our journey, too. We are also walking barefoot on red hot coals right alongside our loved ones, but it doesn't mean our blisters will be in the same places, and they fester if not taken care of properly. This is a support group; it is the right place to deal with these things.

Ok, so I really don't mean to rant, but it feels good, so I'm just going to keep going.

I'm tired of being strong. I'm tired of shallow encouragements by persons I know have no clue what this is like. I resent that my every waking breath is centered around Scott and his comfort. I miss my husband so much; and yet he's right here, sleeping beside me. Is there anything I wouldn't do; anything I wouldn't give to make it better? And yet, I'm tired......... I'm tired of being perceived as being strong.

Yeah, a bit theatrical sounding, but I do actually feel better having just spewed my guts to total strangers on the internet.

................. Wow, I haven't felt this good for a long time, thanks.

Brenda

Re: anyone exerence personality changes long before diagnosis?

Way to go Brenda.  I want to do that too.  Wait I might explode.  I feel like I'm about to blow most days anyhow.  I'm going to work on getting it all out like you did.  I feel better just from reading yours.  I'll work on it.  Thanks!

Carol

Re: anyone exerence personality changes long before diagnosis?

For all you wonderful caregivers, as far as I'm concerned, vent away, you not only deserve it, you need it!  Your ordeal is often every bit as difficult as what we the patients are going through.  I can't imagine having to watch my loved ones suffer through this disease.  So, vent away!

Re: anyone exerence personality changes long before diagnosis?

Reading this thread prompted me to finally register and post.  And since some of the cc patients gave permission to vent---here goes.  My DH's personality did not change before diagnosis but the whole world has changed since.  There are times now that I do not even recognize this person in appearance and personality.  He is frail, bald, yellow, confused, and demanding and it breaks my heart.  It also feels like he is somehow already gone even though he is still here and I know that sounds awful! 

I am grieving for what we had, how we lived, and mostly for who he is (or was).  I still see glimpses of my old husband but it is rare now that we have any conversation that isn't about treatment or his comfort.  He either has no interest in, or memory of, anything else. 

I know this is about him, and not me.  He is the one who is truly lost and suffering and I will continue to everything I can to help and support.  Sometimes I wonder if this is God or Nature's way of preparing us caregivers for the ACTUAL loss---by taking so much away gradually first.

Re: anyone exerence personality changes long before diagnosis?

Hi Jillie,   
I hope after 31 years of love and togetherness, my wife "stands by her man".  You have the understanding and a heart of gold.  I expect to be redirected if this chemo brain of mine forgets or I get a little boisterious and need to calmed down.  My wife had to calm me down at the DMV the other day.  They would not accept a piece of mail with our address on it for her to renew her licence and we had to drive 20 miles back and forth and find something with her name on it, just could't take my word for it. Oh well, in hind sight procedure is procedure.  I am so so sorry your DH's condition is so far along it reminds me of a few years ago of my nieghbor. He was DX and gone in less than 6 months.  I would visit him daily, help feed until he stopped eating, give baths, take the dog for a walk, listen to him and calm him down when he wanted to fight his way out of the house and his wife cry on my shoulders.  They had no family close by or really cared enough to come help.  I closed his eyes, hand bathed him and dressed him before the funeral home come to pick him up for cremation.  His wife just couldn't. I'll never forget she said one thing, is he wanted to leave with his truck driving sneakers on.   I've been the caregiver and now the patient.  I can see the point of view from both sides.  It boils down to understanding the big picture and being able to do your part as some one will for you or I and everyone else eventually, when the time comes.  Unfortunately some of us have to lead the way I guess.  I surely Hope I'm not to much of a pain in the a$%.  Despite all the loved ones passing I will continue on until I'm unable. And that My dear friends is not our choice.  Dying from cancer is just not the same as an elderly person passing on from natural causes the rating goes from PG-13 to R or possibally X.  Why I posted this I don't know.  I 'm a strong believer in dealing with reality; with love and as much compassion as possible.  Someone was talking about a butt shrinking ?  My wife says I still have a cute little butt even if she had to lead me out of the DMV by the arm. Oh! I was frustrated.  Jillie stand by your man and for some others stand by your women.
God Bless and Love to all!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: anyone exerence personality changes long before diagnosis?

I will absolutely stand by him.  It has been my pleasure to be married to this wonderful man and I will do all I can.  I'm not complaining about him being a PIA or anything like that.  I just feel like he has already left me in mind and spirit for the most part and that is achingly sad.  Thanks for your insight.  I have always read your posts with admiration of your strength and humor.

Re: anyone exerence personality changes long before diagnosis?

Hey Jeff-re: DMV, Dave always says "policy is the last refuge of a scoundrel"!  Ha!    I think judging from your post that it really might be better if the spouse's had their own venting chat room.  I know all patient's do understand inside that this disease process is very hard on the caregivers but I still think it must be hard to hear us venting this way.  I know Dave wouldn't like it. But we caregivers have such a common thread. Each one of the posts I read made me feel so good as I wan't sure if I was the only one thinking these things.  It so hit home when Jilli said the only conversations are about his condition or treatment.  Anyway, anyone who would to e-mail me outside of the chat room, I am happy to chat and we love you Jeff and our spouses and will stand by all of you!!

Re: anyone exerence personality changes long before diagnosis?

God bless and be with our caregivers!  You have a very heavy burden to carry.  At my cancer care center we have a support group for caregivers.  Do you have one in your area?  Maybe that would help.  You're right, you need to vent and sometimes give in and give yourself permission to need others as others need you.