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Guilt...yet grieving


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I have pondered and pondered where to make this post, and I guess it seems most appropriate here...moderator's if you disagree...please change it.

I must first preface this also by stating that I TOTALLY KNOW that I am SO, SO lucky to have my dad in remission...and that is why I feel to guilty for the way I feel.

I am grieving, because my dad is just DIFFERENT. I don't know how to put my finger on it. We have always teased that my dad is by nature a pessimist, yet I was there this last week for vacation, and my dad is on edge, angry at everything. We assume that the PCI has hammered on his brain and that is where the loss of short term memory comes in...but his frustration with all of us for not knowing what he is saying is peaking. "I get SO SICK of having to explain myself a million times," he said...but it is our fault...not his. Urgh...

In addition, it seems that the PCI must have fried the little filter in his brain that told you whether you should say something or keep it to yourself, because he says EVERYTHING that is on his mind, and he is hurting people left and right. As my brother says, you can simply apologize once he walks away! Yet, that doesn't make it easier...again, I must apologize because I am so, so lucky to have my dad, that I shouldn't be this way.

This is weighing heavy on my heart right now, because I see it putting a strain on my folks, a strain that we had all hoped would be lessening the more into remission he goes. I have tried to tell dad that he has been given an amazing gift of healing and that because of that amazing gift, he should be trying to change the world for the positive, and while he does some things that are "happy" it seems that most of his hours are heavy with sarcasm or frustration.

I guess I needed to vent. Sorry.

As always, blessings to you all!

Jen

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Jen,

I understand greiving for something even though death is not involved. And it is OK.

I SO grieved before my mom passed. Because of the changes. I grieved harder then I think than I have since.

I actually think my wife has grief over me. I'm so not the same. The disease and the collateral damage it causes gives many reasons to grieve during all stages.

It's OK. I wouldn't feel an ounce of guilt. It sucks. I know remission is what you wanted given the circumstances...but it's natural to still want what we all want..for none of this to ever have happened in the first place and to be living life as we did before.

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Jen,

I agree that grief takes many forms, not only death. I grieved things before I lost Bill too. I grieved for the things we would probably never get to do together. I grieved for the loss of his quality of life, and ours together. I grieved for the probable loss of our future. And that was all when I was still trying to have hope.

Grieving for the loss of your dad's personality and the "personality" of your family is natural. Wanting him to feel grateful is natural too. Unfortunately, that will have to come from him. I think the best the family can do is to try to understand that they can't ever understand what he's going through.

On a practical note, don't the effects of PCI lessen over time?

Hugs,

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The grieving is normal. In the beginning, it's all about the uncertainty, the loss of your security, the possible loss of your future, the thought of losing the person you love...you are grieving the loss of your "normal". It's all natural.

As far as your dad's personality, I would think as caregivers, that grieving would be very natural as well. It's so hard.

Your dad has alot going on inside that none of us will ever understand unless we've had our lives and futures threatened by a serious disease. And although he has been given this gift of remission- which for many is permenant, remission for some is short-lived...I think that reality in and of itself may weigh heavily on him too. And all the things I listed above that we grieve when our loved one is diagnosed- they grieve themselves over the loss and control of their lives and futures, ten-fold.

I know it's frustrating. If talking with him about it doesn't help, I hope your families can band together to support each other while he works everything out.

Perhaps a counselor would help or even anti-anxiety meds.

My dad went thru a period of being very snappy and rude, or he'd just not say anything to anyone.

I think if I was dealing with lung cancer and all the treatments, I probably would be pretty angry at times too.

Sending lots of positive thoughts for things to get better and for your dad's continued remission.

(((hugs)))

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Jen,

I'm so sorry your Dad is having a rough time. My Dad's personality really wasn't altered by PCI, but I have noticed that as people age they do and say whatever they want. And you know what? I say they should go for it, they are at the top of the food chain and deserve the respect they have given for so many years. Not all of the our aged population take advantage of this liberty, but some do. I may myself when the time comes :lol: .

As Katie said, we don't know as caregivers truly how it feels to be facing our own life-threatening disease. I try to get into my Dad's head but it's not something he can easily communicate, and it's not something I can truly understand while I'm in good health.

I hope your Dad is on anti-depressant and anti-anxiety meds or at least willing to take them. My Dad was never pleasant to begin with, but these last two months on steroids, he's downright nasty.

Yesterday, he noticed his mouse buzzer thingy in the garage wasn't blaring full blast. Of course this was my fault (it may very well have been, the noise is irritating like a default alarm clock sound blaring constantly, and my daughter and I take care of the lawn and other maintanence stuff for the house so we access the garage) and he yelled at me and told me I should pray to God to give me a brain. I humored him, fell to my knees and prayed for just that.

I know he's not feeling well, this coupled with the steroids make him almost intolerable. But he's my Dad and I love him unconditionally as he has always loved me. Pray for strength Jen. I know you love your Dad unconditionally also, it's another bump in the road. Whatever you can do to help out Mom would be great too. Take her out and treat her to something special. I'm sure this hasn't been a picnic for her and she would appreciate some time with her kids that isn't cancer or Dad related.

I wish nothing but the best for your family, keep us updated and I hope your days get easier.

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I have experience a little of that with my mom. She lived till 95, but some of the things she would say to the nurse's and nurse's aid in the nursing home was sometime so embarrassing, I would cringe and she thought nothing of it, even after I told her that was not a nice thing to say. She would even make ethnic remarks right to their face. She would have never, never had done anything like that in her life until then.

So I know a little of your dilemma. I just hope in his case that it will lessen in time.

Just want you to know that I am thinking of you and do sympathize with you. I am sure there are many people on here who are experiencing the same as you. Perhaps you will hear from them to see how they coped with that situation.

Maryanne

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I also grieved even before Mom was gone. I grieved the loss of innocence that we had. I grieved how changed she was. I grieved her not wanting to talk on the phone anymore and her not being able to hold Carolyn.

I'm so sorry that your Dad is so changed. I hope that the changes will be temporary. I pray for peace for all of you.

love,

Val

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Thank you all for such kind posts...they lead me to question...do you think it could go away? I mean, is there a "peak" to this kind of behavior? He is one full year from the PCI...and we haven't really seen any of the side affects until now...with all of this...could it be that it will go away?

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Jen,

I don't know if it will all "go away" but I wanted you to know that you're not alone. I "grieve" over the loss of the dad I used to know all of the time and of course feel guilty doing so because at least he's still here...

My dad was always so full of life and never stopped moving now all he does is sit. I look at the pics of him taking Connor on his first fishing trip and I grieve that it was probably his first and last with his "Cappy". My mom just retired and they should be traveling and enjoying their retirement life but instead they are living in some hotel in Baltimore while my father gets shots, blood tests, etc.. and doesn't have the energy to do much.

My family really feels that some of it is from his chemos, his heart, the cancer but we all feel that now it may also be depression (completely understandable.) I finally convinced my mom to say something to the docs up at Hopkins and my dad agreed to see a psychologist that works with cancer patients there at the Hospital. I don't know if thats an option or if your dad would consider it. Just a thought.. Praying for all of you.

Tammy

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Jen,

I don't know what PCI is and I don't know what kind of treatments your dad is going through , but if steroids are involved... prednisone or dexamethasone , you have your answer to the behavior. My husband, Mike was the kindest human being and hated to complain or make waves, but when he was on prednisone he became very agitated, aggressive and would oftentimes strike out at the ones closest to him. He would realize it later and apologize. He would tell me that it wasn't him talking , it was the drugs. Not everyone reacts like this , but many do. It's hard to be patient and understanding when someone is being hateful to you, but it just may be it is medication and not your Dad. God Bless..

Sue

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Jen,

Please DO NOT assume this is because of PCI. Your dad should have a repeat brain scan, just to make sure all is in order. When my dad developed leptomeningeal mets, he started by having short term memory loss and getting angry at everyone.

Don't panic - it could be nothing. However, I would go ahead and check it out ASAP.

I'll be keeping you and your family in my prayers...

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Jen, I have no knowledge about the PCI. I just want to say that your post really made sense to me. Val put it best, right from the start I grieved the loss of innocence. After my dad's diagnosis, I think I lost it more and I now grieve never being able to feel safe and never having the ability to not think of illness/death on a daily basis. Anyone

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Jen--

I really relate to your post in so many ways. I feel guilty posting here--because my dad is alive and he is in Round 3 of first line chemo. But I find myself feeling very similarly to you today...

I am just so sad today. I am sad that he is so fatigued that he could barely make it out of bed. I am sad that on days like today--he is a shell of himself and I miss him. His humor, his quiet energy...his loveliness, his strength. And I find myself grieving right now....that he may never meet his grandchildren, that my mom will be alone...and it seems so unfair. He took good care of himself. This wasn't supposed to happen.

And I find myself grieving the loss of control I feel over my life. I used to think that you could control certain things--you eat well, you exercise, you control your stress, you act decently in the world--and you don't get cancer. So, I miss my old, naive, innocent views...I miss feeling like the universe was a special place and that I was lucky to be here. Now, I feel like the world and life can be so harsh...

So, I am really grieving too. The only thing I can think of is that these feelings pass....and good waves will come again.

In solidarity,

Leslie

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Jen,

This disease changes everything. I know that the day my mom was diagnosed was a day my whole life changed. I tell myself that I won't let it take over, but it is never far from my thoughts.

I did noticed your dad is having scans on the 20th (My mom has her scans that day also) Do think that it is his way of letting out fear. May be instead of tears, he is just angry? (Just a thought.) I think when you in treatment that is all you can focus on. After the treatment is done and you are having scans and waiting I believe many emotions can surface.

I have am not sure but it was just a thought. I will pray for your dads upcoming scans to be good!

Prayers to you,

Dana

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Hi Jen,

It was 2 years after PCI. They did the PCI because he was in complete remission.

People say I tend to get paranoid about symptoms, but I'm glad your dad is having this thing checked out on the 20th. Keep us posted.

I'll be praying for you...

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Jen-

We all understand what you are going through. It is natural to miss what you had and what could have been. I don't know about PCI but several years ago my MIL had a stroke. Afterwards she was the meanest, sarcastic, critical person ever. It took awhile but as the area of her brain healed her personality improved (actually I think she just got back the part where you learn not to say what you think)not that she was ever sweet, but normal again.

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