anyone exerence personality changes long before diagnosis?
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To UKMember and all,
My Mom was diagnosed in April 06 and lived until 8/29/07. She had quit smoking in 2000 after 30 years, so I always worried about her getting lung cancer.
She retired in October 2005 after working for 35 years, and got pneumonia immediately after. It took her forever to recover from it, and I remember worrying about lung cancer. This woman who would go on 5 hours of sleep a night and NEVER took naps would be laying in her recliner when I would go to visit because she was so tired (she lived right next door to me). She would tell us after that she just knew she had to retire because she could not do her job anymore (because of fatigue). Looking back she knew something was not right. In February, she began to get severe diarrhea, and tried to treat it herself. In early March, she began to itch all over, but thought it was a new powder she was trying. She also said that she felt full all of the time, and could only eat a little bit of food at a time.
In the middle of all of this I had a very vivid dream that my Mother had something wrong with her liver and she would not live for long so I needed to spend as much time with her as possible. (That freaked me out)!
Two weeks later, she was outside, and my husband noticed that she was yellow. The receptionist at the doctor’s office would not give my Mother an appointment for one whole week!!!
She was officially diagnosed in April 2006, but the Dr. said that her tumors had been there for years. She had two fist-sized tumors on her liver with some lymph node involvement. Too far gone for a resection. They told us to try to shrink the tumors with chemo, and they would revisit the resection option at a later date. She fought very hard with chemo, but I watched my vivacious Mother turn into an old woman within weeks of starting chemo. She moved in with my family (we have six children) because the chemo made her so weak she was afraid she would fall down her stairs and really get hurt.
At first, she was so grateful for everything I would do for her. I was 4 months pregnant at the time of her diagnosis and taking care of my husband and 5 other children, plus her. She would joke and call me her “Cinderella”. As time went on however, I think the reality that she was not going to be cured set in and an overall sense of sadness took over. The last six months were very hard because I had a sister who hardly ever came around for the first year, and all of a sudden wanted to help Mom clean out her house and take her shopping all over (at this point Mom was actually dangerous in the stores because she was on many pain meds and would drive the carts around and hit people and things – my ignorant sister thought it was funny and my Mother did not know any better). Long story short my Mother started to tell my sister things about me that were just not true and my sister would just soak up all of the attention she was getting – it was awful. My Mother’s brother said it best at her wake – he said he wished my Mother had enjoyed the benefits of having all of the grandchildren and her daughter around her taking care of her. Instead – she was just very sad all of the time and never really smiled – only when visitors came. I know what you say about not wanting to feel bad about talking about our loved ones, but we are the ones left living with all of the emotional baggage to deal with. I question myself all of the time now about how I took care of my Mother – even though I know that I did the best I could at the time it does not make it better now. I only hope that time will heal how I feel.
Sorry to get so long winded about the personality change – but I definately saw my Mother change over the 17 months she was sick.
I can totally understand though – I wonder how I would feel if I were in her shoes. Probably pretty frustrated too.Jillie,
Dont worry too much. Most of us patients have thick skin (it comes from all the IVs the put in.
We all know you need to vent. We all get angry, we all cry, we all get upset. Life isnt fair. You know, I never kicked any puppies and yet I feel sometimes like I have been smite by Fate.We all know that it is tough on both the carers and the patients. Both sides need support. I send my lovely husband to go visit friends. 1.He needs to talk to someone about me and 2. he needs to play and not just think about my cancer. Unfortunately, his big ski week with his friend was cancelled because of my in and out of hospital tango.
And when you think about how much you miss your husband, also think that he misses his old self too. Just because he isnt emotionally the same, doesnt mean that his emotions for YOU arent the same. Distancing yourself from loved ones is a protective measure. When I think that I might be wasting the best years of my husbands life taking care of me, I get very upset. But he once said, “They are the best years of my life because I am with you.” So now I dont push away so much.
Nobody thinks you are a monster, just a woman doing her best in a bad situation. My psychologist came straight out and said it is natural (and sometimes good) to have negative thoughts and feelings. It means that it is REAL and you are in part dealing with it and YOUR feelings are as valid as the next persons. You cant be happy and strong all the time. You have every right to be angry about how you and your loved ones life has changed. We patients get angry and sad and scared and we throw these emotions onto the people closest to us. It is no wonder that the carers have to throw their emotions on others as well. Nobody is thinking less of anyone. There is no divide between patients and carers. We are all just coping (sometimes good, sometimes not so good). There is no competition on who has it worse. We all are in this together. We being the patients, carers and cholangio community. Sometimes I wonder about the strength on this board and wish I could be as strong. Then I think of what has happened and I realise I AM that strong. I think how we see ourselves is not how we are. So look at your emotions and think what you would tell a friend who felt that way. Stop feeling guilty!
We all miss our former lives. It is ok. But it is not just about missing the past, we have to appreciate our present.
Ok. Enough of my babble.
Short response Jille…Dont worry about your feelings. You are entitled to them. We all are.
Kris
Jillie and other caregivers…..please vent away. You all deserve it. Emotional release and openingly sharing is good medicine for the mind and body. This site is for loved ones, friends, caregivers and patients alike. It’s real and if it struck a nerve after three years of chemo and radiation then you did me a favor. Caregivers you all carry a heavy load and wear yourselves to a thread and it doesn’t stop for quite some time ;especially with children involved. I pray that my wife, well I know she is venting with some close friends and family. That is good and I would not want anything different. I admit It makes me feel a bit inadequate and lonley as we always talked about evrything that bothered us. Still do to an extent but it’s a whole new ball game now and I understand. No need for any one to be sorry for venting on this site as “I’ve done my share”. I can choose to read or not. I’ve still got nerves? Wow!
God Bless You All,
Jeff G.I am so sorry if my first post hit a nerve. I wouldn’t want my DH reading it or knowing how I feel. So I should have guessed it would sting the other patients out there. I am sorry but have to confess it did help reading some of the others and being reassured that I am not a monster for thinking this way. I just miss him, that’s all.
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.
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!!
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.
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.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.
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!
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
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
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.
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.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
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