alone, lonely, and feeling very guilty about it
I'm feeling pretty inadequate.
Pat comes downstairs and tells me he has so much pressure and pain he doesn't sleep. His current doctor is pushing radiation, but won't think to give him any pain meds besides Tylenol 3. The guy isn't giving me enough information to help Pat make an informed decision about what he needs to do. This guy won't even consider making things easier for Pat and have him radiated closer to home.
Feeling alone is something I fight every day as there isn't anyone to help out with the simplest things. Everything that needs done I do: phone calls, advocating, housework, financial, lawyers, all of it.
I alternate between deep despair, severe anxiety, and trying to feel like there is nothing wrong so I can act normal.
I refuse to give in and cry, because there has to be something I can do.
I think I will take up boxing this year. Then maybe for just a minute I can feel powerful and strong. I sure don't feel that way now.
Comments
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I too feel so alone, frustrated and angry
My fiance was recently diagnosed with stage 4 malignant melanoma, we havent even begun treatment yet ( jan 3rd), and already we are in shambles. were fighting often, i feel so many emotions.. ( angry, mad, frustrated, hurt, u name it ) and hes just distant and angry all the time. Just do ot know how to cope with this.. Crying,, is what i do often these days.. i am so overwhelmed as u are, i have to do everything and take care of ( 4 kids ) right now. uhhhh some moments i just want to run away !0 -
I told a friend of mine thatkayemsmom said:I too feel so alone, frustrated and angry
My fiance was recently diagnosed with stage 4 malignant melanoma, we havent even begun treatment yet ( jan 3rd), and already we are in shambles. were fighting often, i feel so many emotions.. ( angry, mad, frustrated, hurt, u name it ) and hes just distant and angry all the time. Just do ot know how to cope with this.. Crying,, is what i do often these days.. i am so overwhelmed as u are, i have to do everything and take care of ( 4 kids ) right now. uhhhh some moments i just want to run away !
I told a friend of mine that next Christmas I am going to Afghanistan. I am sure that it will be much calmer than dealing with what we have to deal with. I think that sums it up.0 -
i just dontketziah35 said:I told a friend of mine that
I told a friend of mine that next Christmas I am going to Afghanistan. I am sure that it will be much calmer than dealing with what we have to deal with. I think that sums it up.
know how to deal... u know we werent given a manual on how tocope, deal or handle any of theses type of situations. and frankly, its freakin hard!!0 -
Me too
Girl, I totally know where you're coming from. You have got to get some time for yourself or there won't be anything left. Is there a friend or some one who can sit with Pat while you go do something unrelated to cancer and only about you?
I understand the guilt, but it's really not valid. I know when I spread myself too thin doing everything for Mike I get less and less compassionate with him, resentful, and angry. THEN I feel guilty for feeling that way. My whole family is in Florida for Christmas this year and I'm stuck in downtown Richmond with no vehicle and no money, while Mike is calling me from the hospital begging me to come see him. Cab ride each way is $17.00 and the VA transportation company is not running on the weekends. Today I found a ride up there, but I'll have to spend the night on the cot because I won't be able to get back.
There's no solution to either of our situations, I know you're not a quitter and neither am I. Indulge in a good, snotty crying spell, then dust yourself off and try to escape for a minute, then go back at it. I'll be keeping you in my thoughts and prayers.
Penny0 -
You're going to be okay!Pennymac02 said:Me too
Girl, I totally know where you're coming from. You have got to get some time for yourself or there won't be anything left. Is there a friend or some one who can sit with Pat while you go do something unrelated to cancer and only about you?
I understand the guilt, but it's really not valid. I know when I spread myself too thin doing everything for Mike I get less and less compassionate with him, resentful, and angry. THEN I feel guilty for feeling that way. My whole family is in Florida for Christmas this year and I'm stuck in downtown Richmond with no vehicle and no money, while Mike is calling me from the hospital begging me to come see him. Cab ride each way is $17.00 and the VA transportation company is not running on the weekends. Today I found a ride up there, but I'll have to spend the night on the cot because I won't be able to get back.
There's no solution to either of our situations, I know you're not a quitter and neither am I. Indulge in a good, snotty crying spell, then dust yourself off and try to escape for a minute, then go back at it. I'll be keeping you in my thoughts and prayers.
Penny
Penny,
Sounds like you're a little frustrated, huh? I don't blame you but you have to be strong. I hope 2011 brings everything you're hoping for. Please just be happy that you still have Mike. If I was you, I'd bring a sleeping bag or air bed & sleep right next to his bed. You are so lucky to have him, just remember that. As it gets closer to Christmas, I can feel the tears starting to build up cause Tom isn't here. I never in my wildest dreams thought that last Christmas would be the last one I would spend with him. Just thinking of getting up on Christmas morning alone, makes me cry. I will be spending the afternoon with at my son & daughter-in-laws house with the rest of the family. It's going to be hard for all of us, but we'll have to get through it and remember the happy times.
So please enjoy when your phone rings and it's Mike, cause I'll never hear Tom's voice again.
Carole0 -
You are not inadequate!
I so wish there was something I could do to help. You are going through so much right now. I felt the same way during active caregiving (both the first time and through recurrence ). I still feel anxious and alone because I cannot get over the feeling of waiting for the other shoe to drop. I feel guilty about that because you and others are going through so much more right now.
I just want to say that you are one of the ones I have been following and thinking what an awesome caregiver you are. Everything is so overwhelming and we all struggle through doing the best we can. It is hard getting the information we feel we need, and when the drs are of no help it makes it nearly impossible. One thing that really p**&*s me off about your situation is the pain meds thing. There is no excuse in my opinion (which really doesn't mean much ) for your hubby to be on that much pain. There are such good meds out there. We were lucky because both times during treatment Pats doctors we're very concerned for his comfort and ability to sleep.
I know it doesn't help much but please let the people on these boards be a support to you. Also boxing sounds like a great idea!
Thinking of you and hubby always.
Myka0 -
You said the words I can't find
April, In as much as we are so differebt we both are going thru the same things. The harder I try the harder it becomes. I can not please everyone . I try to act normal but I am no longer sure what that is. Maybe I really never knew.
I refuse to cry , the water you see running down my face is from the shower I took. Anxiety I feel is now becomming my best friend it seams to stay around longer than anything else.
I know you are a strong willed person, but I also know how lonely that can make you feel. I just try to remember all that is good , some days very very hard to do.0 -
Tears are strength, notzinniemay said:You said the words I can't find
April, In as much as we are so differebt we both are going thru the same things. The harder I try the harder it becomes. I can not please everyone . I try to act normal but I am no longer sure what that is. Maybe I really never knew.
I refuse to cry , the water you see running down my face is from the shower I took. Anxiety I feel is now becomming my best friend it seams to stay around longer than anything else.
I know you are a strong willed person, but I also know how lonely that can make you feel. I just try to remember all that is good , some days very very hard to do.
Tears are strength, not weakness. Im not ashamed of crying for either my own challenges and difficulties or those of other human beings and their lives. Crying allows my heart to heal and to replenish the very hope I hunger for so I may continue to link today's reality with tomorrow's locket of promises. Some of life's most precious and quietest moments come at those times when the heaviest demands are unfairly placed upon our heart's shoulders. Our eyes are vital gateways for the very fears, saddness, frustration, joys and inspiration that our hearts spirit uses to share with the world around us. I couldnt imagine keeping my feelings bottled up or my eyes shut closed. Its not only okay to cry but an invaluable quality to have0 -
frustrated but not ungrateful3Mana said:You're going to be okay!
Penny,
Sounds like you're a little frustrated, huh? I don't blame you but you have to be strong. I hope 2011 brings everything you're hoping for. Please just be happy that you still have Mike. If I was you, I'd bring a sleeping bag or air bed & sleep right next to his bed. You are so lucky to have him, just remember that. As it gets closer to Christmas, I can feel the tears starting to build up cause Tom isn't here. I never in my wildest dreams thought that last Christmas would be the last one I would spend with him. Just thinking of getting up on Christmas morning alone, makes me cry. I will be spending the afternoon with at my son & daughter-in-laws house with the rest of the family. It's going to be hard for all of us, but we'll have to get through it and remember the happy times.
So please enjoy when your phone rings and it's Mike, cause I'll never hear Tom's voice again.
Carole
You're absolutely right, Carole. I'm very blessed to have Mike still with me. I know you're really going thru a lot this first Christmas without Tom. Tomorrow is the one year anniversary of losing my mom to breast cancer. In a way I'm thankful for the upheaval in our circumstances, because its helped me not to focus on missing her so badly. I still think about calling her to talk about what's been going on, then I remember I can't. I can't imagine the grief of losing a spouse. I'm wallowing in a little pity-party these days, and I shouldn't, really.
Penny0 -
at the lary holiday party today
I was once again told how strong I am. I must be doing an Oscar worthy job because I sure don't feel strong!
Jennie - I told you before: I NEVER shut off my cell. Use it if you need it or even if you don't. At least I can tell you a story and make you laugh.
Anyone else who needs a laugh message me. It's strange but helping others gives me strength. I think because there is so little I can do for Pat right now I feel useless and everything else. When I'm doing something life is so much easier. Progress!!
Miss Carole - I try so hard not to take anything for granted. I don't know when God is going to call my monkey man home. Thinking about you . . . .
Miss Penny - Your in my thoughts also. I'm here if you need.
Thanks everyone - April0 -
voices3Mana said:You're going to be okay!
Penny,
Sounds like you're a little frustrated, huh? I don't blame you but you have to be strong. I hope 2011 brings everything you're hoping for. Please just be happy that you still have Mike. If I was you, I'd bring a sleeping bag or air bed & sleep right next to his bed. You are so lucky to have him, just remember that. As it gets closer to Christmas, I can feel the tears starting to build up cause Tom isn't here. I never in my wildest dreams thought that last Christmas would be the last one I would spend with him. Just thinking of getting up on Christmas morning alone, makes me cry. I will be spending the afternoon with at my son & daughter-in-laws house with the rest of the family. It's going to be hard for all of us, but we'll have to get through it and remember the happy times.
So please enjoy when your phone rings and it's Mike, cause I'll never hear Tom's voice again.
Carole
I never will hear Pat's voice again either. Fact of being a lary. It sucks.0 -
Its hard tomswijiknyc said:at the lary holiday party today
I was once again told how strong I am. I must be doing an Oscar worthy job because I sure don't feel strong!
Jennie - I told you before: I NEVER shut off my cell. Use it if you need it or even if you don't. At least I can tell you a story and make you laugh.
Anyone else who needs a laugh message me. It's strange but helping others gives me strength. I think because there is so little I can do for Pat right now I feel useless and everything else. When I'm doing something life is so much easier. Progress!!
Miss Carole - I try so hard not to take anything for granted. I don't know when God is going to call my monkey man home. Thinking about you . . . .
Miss Penny - Your in my thoughts also. I'm here if you need.
Thanks everyone - April
think I am strong also...I'm a practical person and I like to fix things..I can't fix this. It causes a great amount of stress to see Robert this way and there is nothing i can do to make it all go away and have the man back that i married. So off i go, coordinating his care, diet, appts and when a new deveopment pops up, I snap. Become #itchy, defensive, resentful...not a pretty site. Robert doesn't deserve that, but it happens. Sometimes I don't even want to come home. I have never been a pushy person, but I am becoming one when it concerns Roberts care and p*ssed off more than one health care professional. Too bad NOT
Guess that is my way of venting my frustrations.
Sorry to have rambled..not a very cohesive post, I must say.
Your post hit home April. You and Pat are in my thoughts.
Angela0 -
Love you Friendmswijiknyc said:at the lary holiday party today
I was once again told how strong I am. I must be doing an Oscar worthy job because I sure don't feel strong!
Jennie - I told you before: I NEVER shut off my cell. Use it if you need it or even if you don't. At least I can tell you a story and make you laugh.
Anyone else who needs a laugh message me. It's strange but helping others gives me strength. I think because there is so little I can do for Pat right now I feel useless and everything else. When I'm doing something life is so much easier. Progress!!
Miss Carole - I try so hard not to take anything for granted. I don't know when God is going to call my monkey man home. Thinking about you . . . .
Miss Penny - Your in my thoughts also. I'm here if you need.
Thanks everyone - April
Apirl,
I have loved you like my own since we first chatted. You are always in my thoughts, You have picked me up and almosted carried me from some alful thoughts.
You shpow suck compassion for others, (like me) That is your strengh. You never stop amazing me everyday.I believe you know what it is to be a true friend.
Alwaysyour Friend
Jennie0 -
I understand the frustrationzinniemay said:Love you Friend
Apirl,
I have loved you like my own since we first chatted. You are always in my thoughts, You have picked me up and almosted carried me from some alful thoughts.
You shpow suck compassion for others, (like me) That is your strengh. You never stop amazing me everyday.I believe you know what it is to be a true friend.
Alwaysyour Friend
Jennie
All of your posts hit home. How we cant fix our loved ones sickness, the fear of whats to come, and the battle with medical staff on care of your loved one.. I was once again put in my place today at the clinic, and showed how my opinion of care just doesn't matter. In so many words I was told how treatment has cost to much and I wasn't getting anything. I was also told in so many words that we shouldn't have gotten some things in the past and they wont do it again. I was so humiliated I had to walk out. I know this doesnt make much sense, but just had to say it.
Thanks for listening
Nancy0 -
Sensenancyann3 said:I understand the frustration
All of your posts hit home. How we cant fix our loved ones sickness, the fear of whats to come, and the battle with medical staff on care of your loved one.. I was once again put in my place today at the clinic, and showed how my opinion of care just doesn't matter. In so many words I was told how treatment has cost to much and I wasn't getting anything. I was also told in so many words that we shouldn't have gotten some things in the past and they wont do it again. I was so humiliated I had to walk out. I know this doesnt make much sense, but just had to say it.
Thanks for listening
Nancy
Some how nothing you said made sense but...... I understood every word, So how can that be. Because you spoke honest feelings , sometimes it feels like our opinions do not count, that , what we think has been or will be belittled by someone.
NEVER let them make you feel that way, If they do tell them put a sock in it. No one has a right to humiliate you. The Doctors we see Know one thing for sure about me I fight for my husband and they know I love him. They treat me with respect and I do them, I take notes with me and ask questions as to why they can or can't do this.
I refuse to let anyone talk down to me ! Remember if they are doctors or nurses they work for you .
Jennie0 -
made sensenancyann3 said:I understand the frustration
All of your posts hit home. How we cant fix our loved ones sickness, the fear of whats to come, and the battle with medical staff on care of your loved one.. I was once again put in my place today at the clinic, and showed how my opinion of care just doesn't matter. In so many words I was told how treatment has cost to much and I wasn't getting anything. I was also told in so many words that we shouldn't have gotten some things in the past and they wont do it again. I was so humiliated I had to walk out. I know this doesnt make much sense, but just had to say it.
Thanks for listening
Nancy
seriuosly - I'm having to get this way myself.
IF this happens again (IF) look at them with a big smile and start off by saying, "Excuse you? I don't think you are listening to me. Let me try again." If you get nowhere, ask if there is someone above them you can speak to that will explain it to you.
And above all, telling them to go blank themselves just feels good.
Having one of those days again - oy.0 -
voices.....NOTmswijiknyc said:voices
I never will hear Pat's voice again either. Fact of being a lary. It sucks.
I know how you feel April. By the time we knew that Ken would have the laryngectomy, he had already had a trach and his voice was altered. I got a small digital recorder and asked him to record some things, particulary for our kids. I wanted him to do separate recordings of things like "Happy Birthday", "Merry Christmas" or "I love you" so that we could go just to that recording and play it whenever we needed to hear it. but instead he did one, long rambling talking to each child and myself.
Sometimes the silence is deafening. He has pulled into his shell so much. I think a lot of it is the communication problem. He has not picked up the EL device in over a month and thinks that I am an instant expert at reading lips. It gets very frustrating.
Has Pat learned to usa an EL?
Debbie0 -
the doctors can be the worse!mswijiknyc said:made sense
seriuosly - I'm having to get this way myself.
IF this happens again (IF) look at them with a big smile and start off by saying, "Excuse you? I don't think you are listening to me. Let me try again." If you get nowhere, ask if there is someone above them you can speak to that will explain it to you.
And above all, telling them to go blank themselves just feels good.
Having one of those days again - oy.
I really need to change my mom's primary....... he wont even return my phone calls or give me her medical records and there is some stuff he has done and hasnt done that others have told me is "Intern 101" where he is blowing it. I have my mom's power of attorney and advanced health care directive which give me ALL her medical and legal power even if she is able to make the decisions herself. My mom always liked this primary because he goes to her church and he could tell a good joke, but I got a list of medical type reasons for not liking him. My mom hasnt agreed yet to change and right now we are taking a little R&R until after Cmas before making hard decisions. The question here really boils down to how hard my mom wants to fight though. She does not want to fight it for 6 years like Elizabeth Edwards did since she considers it futile. Right now it is one day at a time.0 -
pain meds
We all know there are a zillion kinds out there so no excuse not to have something. Ask about Fentanyl patches. They come in many different strengths and you just have to experiment to find the level that takes care of Pat's pain. They stay on for several days and release a steady flow of the medication so you don't have the rollercoaster ride of meds that you have to take every few hours.0 -
bzzzzzzzzzzdebbieg5 said:voices.....NOT
I know how you feel April. By the time we knew that Ken would have the laryngectomy, he had already had a trach and his voice was altered. I got a small digital recorder and asked him to record some things, particulary for our kids. I wanted him to do separate recordings of things like "Happy Birthday", "Merry Christmas" or "I love you" so that we could go just to that recording and play it whenever we needed to hear it. but instead he did one, long rambling talking to each child and myself.
Sometimes the silence is deafening. He has pulled into his shell so much. I think a lot of it is the communication problem. He has not picked up the EL device in over a month and thinks that I am an instant expert at reading lips. It gets very frustrating.
Has Pat learned to usa an EL?
Debbie
Pat is really good with his EL. He uses a Griffin which vibrates ALOT. I understand with the lip reading. The only time I'm usually off is when Pat gives me a new word he hasn't "said" before. Then I tell him try again it's a new word I don't understand.
He doesn't use his EL when his neck hurts. And when he's in the hospital (like he is now) he looks at me to give the nurses and docs all the info they need.
The lip reading is frustrating, but Pat is very communacative (is that a word?) so we work it out.
If your hubby is anything like mine, start calling him a drama queen and a big bratty girl. That will get him upset enough to start using the EL more. The silence sucks, but I've learned he will tell me what he wants to tell me when he wants to tell me. Stubborn Irish man.
Worse case scenario - call him a b****. Works for me!
April0
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