I am venting, not sure where to post this

[Mskim]

Now that my mom is gone I am not always sure where to put things....

My mom was so strong, so independant, was getting ready to retire. SHe had BIG plans. She finally was wealthy enough to buy her first BRAND new car. She and my stepfather were going to travel North America in thier camper. This woman would hike hundreds of miles through Glacier Park with her Husband at her side. She was goign to help plan graduation and weddings and baby showers for great grand children that are not even yet a glimmer.

One day she came down with a bad case of pneumonia and not long after her biggest plan for the future was the possibility of driving that new SUV if her head is clear enough and we will LET her... then it is if she can muster the energy to make it to the bathroom in time.

I cannot even begin to relate to the loss SHE felt.

That woman took nearly every drug known to man... in addition to her chemo she took anti depressants, anti nausea, benydryl, pain killers, blood thinners, anti anxiety pills, antacids, stool softeners, steroids, appetite stimulants, vitamins... Heck my brother even convinced her to take SEA VEG and Mangosteen juice. On top of that was oxygen and radiation.

She did it because she felt she had to. She did it because WE wanted her to. Most of it never really even worked. She was still sick to her stomache, had heartburn, was constipated or the opposite, was in pain, had anxiety, was depressed and sad, and had swelling and alergic reactions.

She cried. Oh how it hurt to see her in pain. It hurt me more to see that emotional pain than the physical.

What it comes down to is that my mom was dieing. She knew it. How do you come to terms with that? How do you prepare? How do you fight? How do you put on a face for your family and friends? How do you make decisions when that power has already been taken from you. The decision live or die has been taken. It is out of her hands. It is the ultimate loss of control.

Just days before my mom died I took her to Seattle for her birthday. SHe had to be on oxygen 24/7 by then and we had tanks and a pump delivered to the hotel. We also had a wheelchair. SHe never used one until that weekend. We thought we would do alot of walking and it would be easier. This I think was the final straw for my mom. I could barely look at her without my heart breaking into a thousand pieces. Even as I sit here and write I can't hold back the pain and tears when pituring my mom so helpless while we pushed her around. The fake smile she would give to make US happy, the look on her face when she though nobody was looking.

I dont know what I am trying to say I am rambling now but maybe this...

I know as a caregiver it is frusterating, irritating, maddening, sickening, heartbreaking, and sometimes difficult to even find it in your heart to give them the unconditional love that you need to give, and they NEED to recieve.

I know we need a place to vent. I am the first in line.

PLease though, remember it is IMPOSSIBLE for us, as caregivers, to imagine what it is like to be in that seat. To be facing death (the odds of surviving any lung cancer are horrendous let alone stage 4!)and having everyone make decisions for you (even inadvertantly) and having that ultimate loss of control, the choice to live or die that we take for granted everyday. I know we don't look at life as being a choice but really, we wake up every morning and choose to keep moving through this life as hard as it seems sometimes.

I am still not sure of my point or where this would have been appropriate to post but I am just feeling so awful and I thought if i wrote it out and someone understood what I meant it might be helpful for someone besides me.

Prayers for all,

Kim

[karenl]

I think I get it, Kim. You said alot of the things that I have felt over the last couple of years. I even believed at times that it WAS easier for Mum than for us - and I feel stupid now for even thinking that! I think Mum really felt the loss of control - and she got heartily sick of Dad and Jana and I presenting new ideas for treatments, or different pills she could take that might help, or reasons for her symptoms. Mum fought with everything she had, but when it became obvious that things were progressing quickly, I think that part of her just wanted to let the disease take its course, but we wouldn't let her. And I feel bad about that now.

I would never have imagined that we could survive losing Mum, and yet here we are, albeit merely a shadow of our former selves. I know that she wanted us to go on and be happy, and I hope that one day we will get there.....

Lots of love coming your way. Thank you for posting.

Karen

[RandyW]

Deb and I had the Death conversation about 2 weeks before she passed away. We were sitting in the living room watching tv and she told me she was tired of fighting this disease and scared of what was happening to her body. She knew what was going on because it was her body. SHe told me if she saw the light she was going to it but she would not look for the light. Her Religion was Eckankar since late 80's. After she passed away I found a book by the couch where she used to sit called Conquering your Fears. I Just got one last month entitled regaining you health. Kim I get it too! We are not in conttrol even though we may think we are. It is their body not ours. God is the one with the master Plan For everyone.He chooses the players he needs when he needs them not us. Much love and glad you are doing ok as ok can be in this situation. Sending a prayer and Thanks for a little reminder about how things work.

[mamasbabygirl]

I have been wondering how you are doing and it seems that you are spending time processing everything, which I think is good. I completely agree that it is harder on the patient than then their loved ones and I try so hard to get my SF and brother to understand this. I think it is quite admirable the way that our loved ones do anything they can to survive, but RandyW always says it is the strongest human instinct-to survive. Miss ya girl and I am still thinking of you. Prayers and big hugs!

[Frank Lamb]

Kim,I understand too even as a patient rather than a caregiver.

All your mom's frustrations are common in many of us.The medications,the fear,the loss of control of being in charge of your own capabilities.

It is always my belief that being the care giver is as difficult if not more so than being the patient.Please know that your mom was very grateful and proud of what you did and how you cared for her even if she wasn't always able to tell you so often enough.

[ztweb]

Oh Kim,

I am so sorry for how difficult things are. I think I am so fortunate at this point. I remember the numb, scared, literally shaking feelings I had as I sat there during dad's diagnosis...then, now, it is as if all the treatments are working, and we are just waiting. It is a numbing feeling, different than the other.

Everything in our life IS a choice, and it is so scary to be faced with ultimate choices, as you said.

God bless you Kim. I hope so much that peace finds you, and that you are given relief from the pain you feel. You are a wonderful daughter.

[MsC1210]

Kim,

I can relate to a lot of what you have said here and I am very glad you have been able to share your feelings and get them "out" so to speak. Venting is necessary, we all do it and we all understand what you are saying. And most of us have been in your position to some extent.

I am sending you prayers and love and hope that you will be able to find peace.

Love,

Chris

[Littlegirl]

I'm sorry that your mom did not get to live long enough to fulfill all her dreams and I am sorry this is weighing heavily on your mind. But as a mom myself I am sure her biggest dream was raising caring, loving children - which she obviously did! It is so hard to watch a loved one suffer so much and lose control and lose sight of all their dreams. But I think the hardest part is when the patient feels that their illness is having such a negative impact on all their loved ones. I know in my mom's case she just never wants to be a burden. Although I know she appreciates that she always has someone to support her at any of her appointments, or to fix a meal, or help out with housework...she hates that any of us have to juggle our schedules to fit it in. And my parents did not have any big trips scheduled but often went fishing with some friends of theirs, and I'm sure that mom feels guilty that they have not made it to the lake very often this year. (They did get to go once - yea!) I think the hardest part is when they realize that their illness is not only affecting their plans for the future but for the plans of thier spouse as well. And to be suffering in front of their children when their is nothing anyone can do to make it all better.

But your mom would not want you to dwell on the negatives of this disease. She would want you to celebrate the life she lived and remember her abd how she was during her healthy years. I know this is part of the grieving process. Come and vent whenever you want to.

Prayers that you'll find some peace. Karen

[Linda661]

You did great in your expression, Kim -- you didn't ramble at all. Oh do I get this one, because it is exactly what my mom is in the middle of now and it's very hard to watch (was the cause of my latest vent in caregivers section). My mom is currently processing a loss of hope, a loss of a future (no matter what she does) in her own mind and all I can do is sit by and wait for her decision on what she wants to do. All those symptoms you mentioned and nothing seems to really be helping.....yep, my mom too. Watching the emotional pain is excruciating and there is nothing anyone else can really do to take it away.

When you were so independent before dx, how do you fathom having a future when you can't go anywhere for more than about an hour and a half on a tank of oxygen 'cause your needs are so high (and so far, pulse dose technology doesn't work for her to stretch tanks and we can't haul extra O2 tanks safely -- they leak at the drop of a hat)? Can't go anywhere without a pack of Depends on hand and even those don't hold what happens to you so fast and without warning (to the point of overflowing on the floor in public, in the wheelchair, all over your clothes). You can't walk around on your own -- you need help for everything you do and probably will for the rest of your life? And, the times you get any relief from your 18+ meds, you feel fogged and dopey and don't really want to do anything then either?

Your mind is still dreaming of beautiful things to do and experience, but the body can't follow those orders anymore...... You try to talk about normal things, but the tears roll down your face anyway -- giving away to anyone around you that something is amiss inside you, but there's no way anyone can help you with it?

This is where words utterly fail. And you're right on, none of us can really understand what that's really like as caregivers. Quite frankly, I'm not sure any of us really know how to give UNCONDITIONAL love in this circumstance: I think that's the part we get to learn in this process. In my mind, unconditional love doesn't provide hurt to anyone -- patient or caregiver -- at least that's where I'm at at the moment......

Linda

[Carleen]

Kim I understand every word you wrote.

I can NEVER fully understand the sense of loss my husband must be feeling. At the age of 31, to have your life and plans pulled out from under you.

He had finally moved to a position at his company where he LOVED his job, was getting paid well, and life was wonderful. We just purchased our dream lot and were in the process of starting to build our dream home as well as trying to start a family.

He too went in one day for flu like symptoms with pain and high fever and BAM! Someone stole all his dreams away.

He did well for the first 2 years, but it wasn't the same as before. He couldn't do things like he wanted because of either being on chemo or recovering from chemo, doctor's appointments, medications and on and on. we could barely plan anything a week in advance much less plan anything for a Future.

Now, as he struggles with each and every day; I too see how hard he fights and what he must overcome not only for himself but for ME. He is in constant pain, stomach pain, Swelling, Fear, anxiety, fatigue, and grief. He DOES NOT want to die. Seeing him struggle both physically and emotionally tears me apart. Seeing this will scar me for life and I will never be able to erase the image of his pain and his tears. There is no way to be prepared for this, not as a patient and not as a caregiver. For both of us it is complete loss of control.

Keith often tells me he thinks this is harder on me, because I will have to live with the pain of this long after he is gone. He says he doesn't know whether he could handle this if the shoe was on the other foot. I don't know if I believe that it is harder for me. I feel terrible pain when I think about facing death and the end to all the life that should have been ahead of us.

I also feel a great amount of guilt when I think about my own pain, and how Hard I think this is for "poor me". Because immediately my mind remembers just exactly how hard this is for him.

It is a circle of love I think. Both of us want to alleviate the pains of the other. I would sell my soul to be able to trade places with Keith and make him better. Keith would endure his pain in silence to save me the emotional pain of his suffering. He has also said he is glad it is him and not me, he wouldn't allow me to trade.

This past weekend, Keith was feeling Horrible, but he got himself up and dressed to go to a wedding with me because he knew I really wanted to go. After being there for only and hour, he couldn't bear the discomfort and pain anymore and had to go home. On the car ride back home, he looked so down and depressed. When I asked him if he was in pain, he said that that was not what bothered him, it was that he really wanted to dance with me just one more time. Any disappointment I felt at that time for having to leave a friends wedding so early vanished immediately and was replaced with the pain of yet another failed dream and desire of my love's.

[Treebywater]

Kim--You said so many powerful things here. And the replies that have followed are equally as thought-provoking. I think you gave us a good way to process many feelings. Thank you.

I can also relate to so much of your post. In Sept. of 2004 my Mom went into a 'forced retirement' because Maytag refrigeration closed down. She wan't to retirement yet, and it was scary for her to be out of a job, so that was quite a blow to her, but she was REALLY looking forward to spending some time out of the factory environment, coming to visit us, being there when Carolyn was born, playing with her, travelling all over with Dad.

Two months later--TWO MONTHS she was diagnosed with Lung Cancer. So much for that dream retirement, right? It really just is so unfair. And just as you so eloquently expressed, she experienced so much loss even before she/we knew she was 'dying.' She couldn't come when Carolyn was born. She had to wait 8 weeks to even see her little face. When she was born I called her in the chemo room. So unfair. And that's just the tip of the iceberg.

Thank you for such a good dose of perspective about what our loved ones lost. It is painful for me to think of that, in hindsight... No way to wrap my arms around my Mom and say, "I'm so sorry this is happening to you." But it is still powerful. Helps me not to look just at ME.

(((((Kim))))) I'm so sorry for your hurt. I'm so sorry for the dreams your Mom lost. I'm just so sorry.

[bunny]

I haven't been through this, and I ache for your loss. your feelings all sound like the thoughts that were going through my brain before my own mother was out of the woods. I just wanted you to know I heard you. I wish I could do more, or add something to ease it for you.

[Snowflake]

I guess, as a patient, the hardest part isn't wondering how they will go on without me if I die, it's knowing that they WILL go on without me....they'll feel the wind in their hair, the sun on their face and still laugh and live and I won't be able to share it. Must be real selfish of me to want to be a part of it all.

But "control"? It's an illusion. No one truly has control of when they live or die. Dying is not a choice, it's the end of one journey and the beginning of another, but it is not an option.

I don't think it's easy on either side of this fence. The grass isn't any greener on this side, the sky isn't any bluer and the birds don't sing any louder or sweeter. One thing I HAVE learned through this whole journey is that NO ONE is guaranteed a tomorrow and the important things in life really have nothing to do with a paycheck....and even if I live to be 100, there will ALWAYS be more I want to do.

...and life is not fair. No one ever said it was.

I'm sorry for your loss and all the raw emotions it brings out. May you start to heal.

[Mskim]

You are right I realize life is not a choice... I think what I meant is that when you are given a terminal sentence, you can pray for miracles but if it is not God's will then you have no choice but to go with it.

I make the choice every day to get up and move on.

I have children to think of but I often think if I didn't, sinful or not, moving on without parents would be very hard. I don't know that if I didn't have a husband and children that I could go on. I think if I didnt have them I might have a weakness in me that would let me give up.

I so appreciate all of the perspectives and feedback here. I knew you would all say something to help and I am grateful.

My dad was killed in a motorcycle accident on sept 6 2003, he was 58, and I was just getting to the point where I wasn't falling apart on a daily basis when mom was diagnosed so I know about grieving and healing and I know it will get better but this is so different.

With Dad it was a shock in a different way, one there and the next he was gone.

I watched my mom go from incredibly strong to, well hate to put it so bluntly but, dead, in 11 months. The process for both are so different aside from the fact that this was my mom. My everyday. I came from her body. I know you know so many of you know what i mean. I was CONNECTED to her in a way i can't even put into words. Oh how I miss her so much. My heart is just wrecked these last couple of days and I am analyzing everything. I know it was not what was best for her but I would have cared for her forever. I love her so much.

Thanks again everyone and God Bless you all.

I pray for all of us every day.

Kim