Today I Am...

[tara12]

WELL ,

I feel terrible today and depressed and alone and sad , the weekend of xmas , everyone all joyous and family gatherings... not that xmas was ever a joy for me anyway , but this time is worse.

My mum died 6 weeks ago .. it was long and drawn out , ten years . SHE WAS HIT bu a truck and it crushed her , she wa sin a coma , died , but then came back... they say becuse she heard me saying please not to go yet , so i heard at her funeral.... but always sortve knew she stayed to finsih unfinshed stuff with us ... it was always so hard , growing up , really bad... and then I had tried and tried and the day she was hit , they ahd come to visit for the first time ever ... and then that ...

so ten years and slowely she deterioted until 3 years ago and then she ahd t o be in care , on morhine , oxygen , her mind sharp as until hours before she died ( and went unconscious )... it was years of worry , sorrow , seeing her in pain and suffering ... ended , but so sad... then my dad 2 weeks later had a heart attack ..... and then punemonia , i was the one long distance on the phone who rang the ambulance , 1200 kms away ........ i am the only one left , my bro is hopeless .sick man... liar , hurtful abuser ...... so its just me .......

so anyway , so here i am again in the worry and it feels like the same thing all over again ... and i feel like **** ...... and yesterday he called and told me he feel and lay on the ground for hours cause he couldnt get up ... and i feel frustrted and scared for him , but know ,i cant stop it , cant save him , i tried and tried to organise home care for him , home help... but it never happened , tried to be sure when he went home they would send him home with a medi alert , so if something happened he could get help.... nothing happened .... today I CALLED and made a polite fuss , and they apologised and pormised in the new year they will go see him... i wont hold my breath.,... cause i called them all week before he had the heart attack and they said they would go and didnt either ... and then the hospital said they would set things up and send me the outcomes of the services they would get for him and they didnt do that either ........ seems the old don't matter to people , seems they are a burden , noone seems to care at all..... and i cant do anything more , i dont have any money , he doesnt have money , money talks ... if your poor , if you helped others all your life , it doesnt matter , cause in the end noone cares about you... this is how i feel tonight , i feel nooone cares about me either , noone....... i feel so depressed , i feel no joy , no hope tonight , i know it will change , but i feel so helpless and no control , which is true , and i know i have to carry on and be strong and do what i have to do ........ but i feel sad , sad its this way , sad about it ........ oh well , i know it can be much worse , i know really in the scheme of things , its nothing really .... just felt her e, i can share , mayeb someone will understand this feeling , its so hard , caretaking... and this is onoy a breif glimpse , it would take to long to tell the whole story , for you to really know , but its taking my life ..........

[judy29]

I can finelly understand what it is to lose my love, it is just hard I mdo not know what I would do if I did'nt work and did'nt have any kids or friends I try to keep busy and make a life for my self but it so hard I want him back the way he used to be not sick all the time like the last year,but at least he was here for me and could talk to me.

jUDY 29

[cheree]

Hello, I am not sure if this is the place to be but, today I need to be somewhere & try to get info on how to cope.My father now 69 has been battling 3 years of: Heart Valve Replacement, A lung tip removed, A kidney removed from Renal Carcanoma and the last year Lung Cancer.He is a very stong religious man and is determined to live. That is wonderful but,there is just us three girls and my mother who has macular degeneration & in need of a second Knee replaced.

Neither parent can drive and only 2 of us children live close enough to help. The 6 hour drive round trip to doctor apointments and treatments have taken a toll.My father who was a meek man has now become critical of everyone. No one pleases him, everyone is trying to tear his vehicles up and he talks so hateful and nasty to both of us girls.He never seems to be happy or glade to have what help he gets it\'s always unpleasent. My sister has now threw her hands up and said NO MORE! She refuses to help at all and says don\'t call me I\'ve been verbally abused enough. Now my other sister is in another State with 4 kids and a sick spouse too, that leaves me. I work 40 hours a week, cook,clean, shop etc. for my family and home. I go every evening, pick up the mail, feed their pets, do grocery shopping and pickup meds and anyother things they may need.I recently changed jobs for better pay and benifits so I am unable to drive them to Dr. visits and any treatments that may arrise.This leaves my husband and anyone else I can find and beg to transport them.Now my husband has became the enemy. My father says he drives to fast and is trying to tear up the car & doesn\'t wan\'t him to take them anywere. Our vehicles are not in shape for long trips.Long story short please I need some info on how to cope.

[DeeAnn]

Dear Cheree,

Sounds like your plate is way full. Have you talked to any of your dad's or mom's doctors to see if there may be local organizations that could help you? If your folks are involved in a church, you may could find some assistance there. It's a difficult situation you're faced with, at best, much less with the added complications of the different temperaments involved.

I hope you're able to find some relief somewhere. Please let us know how you're doing and what you find out. If nothing else, we can give you a place to vent here.

DeeAnn

[Guest Guest]

Today I Am NUMB. I help with my sister a couple of days and a couple of nights a week... if you can even call it that... help? It's really just a matter of keeping the pain at bay. She's become very abusive towards the person who loves and cares for her the most... her husband. It is so out of character for her to be like that. They are and have always been very much in love. The cancer must have spread to her brain. Our minds know that but our hearts are breaking for my brother-in-law, especially after everything that he has done and is still doing for her. I think I'm numb because my body can't take the emotional pain anymore right now. It needs a rest, I think, for the inevitable pain that's to come... I Am NUMB... and, God forgive me, hoping that my sister's heart just stops in her sleep tonight.

[jayallen]

I can totally relate. My wife has been "terminal" since January. She took a turn for the worse in March and April and we thought death was close. She has bounced back in the last 3 or 4 weeks and now is just maintaining. At times she has a lot of pain and then at times she has none. I was mentally prepared for her death and then it didn't happen. What I thought would be over in a couple of days or weeks now may last much longer. I feel like I am in a time warp and as sad as it sounds I seem to do worse when she is doing better. Unlike your sister my wife has remained pleasant for the most part. She too has cancer in the brain but it hasn't changed her personality much which is a blessing. I keep telling myself to take it one day at a time. That is easier said than done on some days. I don't know your faith but we are christian and knowing God is in control and has his own timing does help at times. At other times the inevitable questions of why do come up. Message boards like this and talking with close friends who will let me vent have kept me somewhat sane. This is the hardest thing I have had to go through so far and I can't imagine anything harder unless it was my kids or me. Wish I could say something profound to help you and me for that matter. I guess just getting to vent a little and read about someone else helps. The old saying that it could always be worse is certainly true. Hang in there!

[alwaysmyjennifer]

jayallen, I'm sorry you are also going through this difficult time too. I read your post and thought how normal it sounds that on her better days, my emotional situation is worse too. It's almost like I'm being mocked for grieving. My wife has one of the dystrophies, which in her case is excruciating pain, loss of mobility, loss of mental capacity, strokes, even the possibility of a heart attack. Knowing God is totally in control, even when disease makes things look so out of control, is comforting and empowering. I trained in seminary for ministry, and write a sort of blues Christian music (it's a little raucousy, but people respond well to it). I'm happy your wife's mood is pleasant mostly. My wife is in such intense pain, she can sometimes become "irritable", to say the least. When this happens, I keep the prayer going, which helps a lot. Before faith, I was an addict, and one tenet of AA and NA is take it one day at a time. These programs were originally Christian, and this concept is based in the Scriptures. We must live our lives, althewhile casting all our cares on our Savior. Please feel free to write again anytime. I'll keep you both in my prayers.

[jayallen]

Well it has been another week to 10 days. I feel like I am in the movie Ground Hog Day. Every day seems to be like the last with perhaps a few minor differences. My 13 year old son is having a hard time with things. He tends to avoid his mother. He wants to do things that invlove me like going to the lake or playing golf but we can't because I have to be here with mom. I try to let him get away with friends as much as possible. I worry about him. My 20 year old daughter is moving to college next week. It's only 40 miles away. I am trying my hardest not to get stressed too much. I will miss her but it will nice not to have her chaos around. All the money being spent is another issue. Care for my wife and $$ for daughter to get set up. I am so tired of talking about our situation but almost everyone asks. It has only been 5 months since the "6 months or less" but it feels like a year. The thought of this lasting a year is daunting. My wife feels pretty ok a lot of the time but at other times she really struggles with the pain and other little problems so I feel guilty wishing for this to be over. She is eating more and has even gained a couple of pounds but is still skin and bones. I just don't understand how an agressive cancer that apparantly was moving fast simply stops or at least slows a lot. Because of the pain and other things I am not kidding myself. I know the probability of her getting better is low so that just makes this day after day stuff almost intollerable.

[alwaysmyjennifer]

Jayallen, it almost sounds like you and I have very similar families. My 13 year old is bottling up his feelings way too much. A personal friend is a counselor, so he gets to see her for his anxieties and fears. The avoidance you see in your son sound like fear, which can be addressed, but he may not open up to you about it, because he can see how much you already hurt. My older son is about your daughter's age. When my wife had her last stroke in March, he quit college, left his fiance (they were engaged), and changed jobs. he plans to restart college this fall. He still lives with us, but is rarely home, and only then to sleep, shower and wash his clothes. He has become increasingly arrogant, even fighting with me, which he never did before his mom was diagnosed with the dystrophy. For your children, all I can suggest is that you take them out as much as you can, even if it means "hiring" a "sitter" for your wife. She needs the break from you as much as you need the break from the stress, and so do your children. You may find that your daughter settles her emotions once she's settled into a routine at college. My oldest is my daughter, 31 years old. Her and I are very close, more like best friends, or mom and daughter relationship, not like a typical father daughter. We talk about everything and anything. She adores her step mom. I hope you and your daughter are this close, because she'll need you in so many ways after she loses her mom. Some men aren't comfortable talking about "female" things, and I hope you are able to talk with her comfortably. If not, you may be wise to seek the help and wisdom of one of the ladies in your family, with whom she can easily talk about life's little issues. All this stuff is stressful for me too, and it's not my first time going through it. My daughter Jen died in '96 after being raped, and her mom took her own life in '97, after trying to cope with the grief. My prayers are with you for the peace you need today. Write whenever you want or need. I'm always here to listen and help.

[daweast]

I can finelly understand what it is to lose my love, it is just hard I mdo not know what I would do if I did'nt work and did'nt have any kids or friends I try to keep busy and make a life for my self but it so hard I want him back the way he used to be not sick all the time like the last year,but at least he was here for me and could talk to me.

jUDY 29

[daweast]

I can totally relate. My wife has been "terminal" since January. She took a turn for the worse in March and April and we thought death was close. She has bounced back in the last 3 or 4 weeks and now is just maintaining. At times she has a lot of pain and then at times she has none. I was mentally prepared for her death and then it didn't happen. What I thought would be over in a couple of days or weeks now may last much longer. I feel like I am in a time warp and as sad as it sounds I seem to do worse when she is doing better. Unlike your sister my wife has remained pleasant for the most part. She too has cancer in the brain but it hasn't changed her personality much which is a blessing. I keep telling myself to take it one day at a time. That is easier said than done on some days. I don't know your faith but we are christian and knowing God is in control and has his own timing does help at times. At other times the inevitable questions of why do come up. Message boards like this and talking with close friends who will let me vent have kept me somewhat sane. This is the hardest thing I have had to go through so far and I can't imagine anything harder unless it was my kids or me. Wish I could say something profound to help you and me for that matter. I guess just getting to vent a little and read about someone else helps. The old saying that it could always be worse is certainly true. Hang in there!

[daweast]

My daughter is in the last stages of cancer. The days seem so short and I'm so afraid of losing her. She is in so much pain. She tries not to show it but you can see it in her face. She has five children. One of them is three and can't understand whats wrong with her mother. I'm a nurse but have never seen approaching death from this side. Somedays I just don't know what to do.

[alwaysmyjennifer]

Daweast, I'm sorry you are going through this, and your daughter is so ill. I lost my daughter Jenni on May 22, 1996, after being raped and beaten to death. Young children experience grief in a vastly different way. They don't see things in abstract terms very well, so the concept of death is nearly impossible for them. Please know that we are here for you, to listen to you, and to try to help you on the days when you just don't know what to do. We're here to help. My prayers are with you all.

[suelowe]

Mark, i was just browsing through this part of the website, you know, looking around to see what's what and i've just read about how you lost your daughter. i'm shocked mark i really am. i'm not sure what to say about this one, as it's a very sensitive subject. God i didn't realise. I'm speechless. i'm sorry for being nosey here, but my god i'm shocked.

i apologise for being very brief here, but oh, my mind's gone blank!

i'm sorry, take care of yourself

sue

[missey]

Today I am.. taking the first step to say out loud that my husband has terminal lung cancer. Our kids are grown but just, they range from 26-29 yrs old. Hr's not too sick yet but treatement was finished last May..and was not successful.

We both still work so that helps keep our minds busy but it slams in often. Sometimes I look at him and can't believe how this handsome mand can be dying. The doctors told us 12-18 months but from when?

We've had the first test that shows some progression of the disease, We have a good friend who is an oncologist and he has described what it's going to be like to dye with lung cancer.

I find it so hard to not be sad all the time.... even when I tell myself that things are good right now..enjoy what we have now and stop looking down the road at the unknowns.. but it's hard.

I was reading a book by Senator Edwards wife, called "saving graces' about how she got so much support from online groups so I thought I'd search into it.

Funny how even jus ttyping about it, has had me in tears the whole time...

[alwaysmyjennifer]

Missey, I'm sorry you and your husband are going through this. This is a special place, "our place", at BeyondIndigo, where tears are cried among friends. The journey you face may seem long, yet far too long at the same time. My wife is now in the final stage of dystrophy, which is terminal, with no way of knowing how much time she has left. The illness causes her unbearable pain, and recently has begun to cause strokes. This is why I say what I do. I don't want to lose her, but just as much, I could never ask her to fight the disease in order to stay another day. She has fought too long, and deserves her rest. I know those tears you wrote about. What we write here is highly emotional, so we tend to cry at times when we write about the deeper, more emotional issues. Please feel free to write anytime. We're here to listen and help. This week I'll be out of town on holiday, but I'll still check in when I can. My thoughts and prayers will rest with you and your family. Mark

[rodless]

Missey, I am so sorry. I went through a similar experience with my husband who died in July from lung complications of chemo for non-hodgkins. I will be thinking of you and praying for you. I also have read Elizabeth Edward's book and I'm glad it lead you to look for help. I wish I would have found this last year at this time. Tears come whenever they want to and I have learned to just let them flow... Mary Jo

[messenger]

MISSY I AM SO VERY SORRY TO HEAR ABOUT YOUR HUSBAND............PLEASE EMAIL WHEN YOU GET A CHANCE..MY SON HAD TERMINAL CANCER AND DIED 16 MONTHS AGO TODAY.......I WANT TO MENTION A FEW THINGS YOU MIGHT CONSIDER....I WENT TO CANCER TREATMENT CENTER OF AMERICA AND PEOPLE WHO HAVE NO...HOPE GO THERE..........THEY HELP MANY AND YOU MIGHT WANT TO GET 2ND OPINION...MY EMAIL IS LOVEISANGELS74@SBCGLOBAL.NET

YOU ALL WILL BE IN MY PRAYERS

MESSENGER

[missey]

I checked online last night, before bed and noticed two people had commented in reply to me today it makes me happy but last night it made me sad. I spent some time trying to figure out why and decided it was that all of you have had losses or are dealing with terrible burdens at home. In some ways, I didn't feel so alone but in others it was scary how devistating cancer and terminal disease is.

We all hope it won't touch our families but there are not many of us who haven't lost a loved one.

Mark, to be dealing with all this and have children in the home must be so hard. They are too young to watch and understand, WE have a hard time and we have years of experience.

Mary Jo, I think your comments touched my heart, you've already gone through what I am dreading the most... losing John. And here you are, writing to us just monthes later. It's interesting how my sad thoughts are sometimes for John and what he will have to go through.. to know you are dying must be terrifying but there is a selfish part to this pre-greaving. I don't want to lose him, the thought of living the rest of my life without him seems incomprehensible.

We move through our days, assuming we will grow old together or that we will have time with grandchildren or watch our children shape their lives...

But all of a sudden, you are changing all your assumptions. We were aware of the kids going through a grief process when the diagnosis was terminal. You have to greave the loss of thos ideas and accept the new reality.

Our biggest challenge right now, is to not let sadness or"cancer' rule the day.

It's a work in progress.

Messenger, I am in Canada so my resources are different. We've had several opinions. It's still early days, we think, but John participated in a PET study and it expanded the information before treatment was started. At this point, we haven't done any more, it was a healing summer from the massive radiation/chemo. He had both at the same time since he was considered young and strong. They really tried to get it but.. no luck so far.

It helps to talk to all of you.. alot, especially when you have your own troubles.

Thanks!

[missey]

Daweast,

Is your daughter at home or in hospital? Can't the her medical care give her something stronger for the pain? I remember my mother dying and she was in pain, one brother didn't want her to have so many drugs that she was not able to communicate but to see her suffer was unfair to her. Sure she didn't know what was around her most of the time but she was smiling, she didn't suffer. Do her children see her in pain? I may be out of line but her care should be first. Do you have any family support for caring for her family?

I was aware that my mom was depressed and didn't do anything to get the doctors to treat her, I should have. There are so many resources out there to help them, it's a shame to not use them.

Keep in touch ok?

My daughter is in the last stages of cancer. The days seem so short and I'm so afraid of losing her. She is in so much pain. She tries not to show it but you can see it in her face. She has five children. One of them is three and can't understand whats wrong with her mother. I'm a nurse but have never seen approaching death from this side. Somedays I just don't know what to do.

[messenger]

MISSEY,,,JUST LETTING YOU KNOW I AM KEEPING YOU IN MY PRAYERS....I PRAY THEY FIND SOMETHING FOR YOUR HUSBAND..HAVE HEARD THAT THEY ARE PUTTING HEALTHY CELLS IN A PERSONS BODY WHO HAS CANCER AND IT GOES TO CANCER AREA...HEALING IT???...I PRAY THEY FIND SOMETHING FOR YOUR HUSBAND....SO HARD TO SEE THEM GO THRU ALL CANCER SENDS THEIR WAY.....WE ARE HERE FOR YOU....WRITE ANYTIME...

MESSENGER

[missey]

Hi Messenger,

didn't sleep very well last night. John has a scan appt. for Friday am. They want to confirm that nothing is spreading to the brain. I'm aware that we both get more tense coming up to these tests. He was up and down last night too.

Stress management is sure a big issue with all this. We keep telling ourselves that John is fine for now...no spread...no change in cancer size etc. but the fears are always there.

Take care and keep in touch

MISSEY,,,JUST LETTING YOU KNOW I AM KEEPING YOU IN MY PRAYERS....I PRAY THEY FIND SOMETHING FOR YOUR HUSBAND..HAVE HEARD THAT THEY ARE PUTTING HEALTHY CELLS IN A PERSONS BODY WHO HAS CANCER AND IT GOES TO CANCER AREA...HEALING IT???...I PRAY THEY FIND SOMETHING FOR YOUR HUSBAND....SO HARD TO SEE THEM GO THRU ALL CANCER SENDS THEIR WAY.....WE ARE HERE FOR YOU....WRITE ANYTIME...

MESSENGER

[rodless]

Missey, One of the worst things you're going to deal with is the tests and waiting for results. Hope and a positive attitude help a lot even when the answers aren't what you want to hear. I have been thinking about you a lot. Our total journey through the cancer took 4 years with a 2 1/2 remission in between. The stress is incredible even in the good times, and watching someone struggle to breathe is heart wrenching. I'll be watching for your posts. Mary Jo

[missey]

Today I am ok Some days are better than others and today the fear was distant. I am so impressed by you Mary Jo, my heart goes out to you and all you have to face. I was reading a bit more of Elizabeth Edwards book today, somedays I can't take too much. But today, there were a few sections that I found very worthwhile to me.

She was talk about accepting what we can not change...heard that many times before.. and living the best life you are capable of. Not always easy to do but a worthy goal.

I try not to be sad or to take a very happy moment and let my mind go down that road of loss. I takes work and it made me think of you Mary Jo... how you must be grieving and you still take the time to think of others.

I'm aware that there are days when I feel selfish. When I can't bear to think of all the death and disease affecting others. My own life is complicated enough. But, I remind myself how much it means to have this contact, it's important and even if it's hard, it helps all of us.

Tomorrow is another test, no results for awhile though.

Take care and keep in touch.

Missey

[messenger]

MISSEY,,,,,,,,,,,,I WILL BE LIFTING UP YOU AND YOUR HUSBAND IN MY PRAYERS FRI AM...I TOO AM HAVING ULTRASOUND FOR POSSIBLE MASS..BEEN 2 YEARS SINC I HAD BREAST CANCER.........ONCE YOU HAVE IT ...........YOU CANT HELP BUT BE CONCERNED..THE UPS AND DOWNS OF IT ARE TERRIBLE..SORRY NEITHER GOT ANY SLEEP ....I PRAY TONITE..............YOU WILL SLEEP PEACEFULLY AND TOMORROW YOU WILL GET GOOD NEWS FROM HIS TESTS!!!!!!!!!!!!!!1

KEEP IN TOUCH..WE ARE HERE FOR YOU

MESSENGER

[rodless]

Missey, Thanks for the kind words. I am lucky to have a great family, good friends and a spunky little dog that gets me up and going in the morning. I went through a bad divorce +20 years ago and learned the hard way that being unhappy doesn't get you anywhere and makes getting over things worse. This time I have decided to take a positive course although there are some days that I backtrack and fall apart. I will mourn Rod for as long as it takes but be grateful that the last 20 years of my life were happy and fulfilled when they could have been lonely and empty. He was 15 years older than I so I knew that I would probably be left alone at some time, but that was in my head and not in my heart. Please cherish each day you have with your husband and always keep hope alive. We didn't have a miracle but I always pray someone else will. Be good to yourself!! Mary Jo

[missey]

Rodless, I've had the impression that you have a good sense of balance. I also recognized that comment ' every one in awhile I backtack and fall apart' I had one of those days yesterday, everything made me sad. I'm going to try to follow your council and cherish today... the half full glass instead of the half empty.

That's what I seem to be doing on those down days... seeing this wonderful man as someone I am losing instead of someone who is here now and rumbling around the house with me. Boy I find it hard to talk about my fears it makes me go down that road of loss and grief.

I swear that some days we declare to be 'cancer free' days and we don't talk about it, research any thing or even let our minds give it any thought. It's like being given permission to just be our old selves and enjoy whatever unfolds. Out hearts and minds just need a rest to live for today.

Today is sunny, with beautiful fall maple leaves everywhere so it's definately a sign to be thankful.. it could always be worse.

Keep in touch and your thoughts always life my spirits. I should tell John to thank you for his being cherished today

Missey

Missey, Thanks for the kind words. I am lucky to have a great family, good friends and a spunky little dog that gets me up and going in the morning. I went through a bad divorce +20 years ago and learned the hard way that being unhappy doesn't get you anywhere and makes getting over things worse. This time I have decided to take a positive course although there are some days that I backtrack and fall apart. I will mourn Rod for as long as it takes but be grateful that the last 20 years of my life were happy and fulfilled when they could have been lonely and empty. He was 15 years older than I so I knew that I would probably be left alone at some time, but that was in my head and not in my heart. Please cherish each day you have with your husband and always keep hope alive. We didn't have a miracle but I always pray someone else will. Be good to yourself!! Mary Jo

[rodless]

Hi Missey, I appreciate the "balanced" comment as so much of the time I feel wonky (that's a word I learned playing Scrabble that means unstead.) I just really don't want to repeat the esperience I had after my divorce so am really trying to stay positive. I can say that today.... last night was another story. Rod and I used to talk about "if something would happen to you." He fought facing death until the last day or so even though he knew it was coming. If you and your husband can talk honestly about the things that are happening, I know it will be much easier for you later. Wait until it's necessary... just enjoy each day of him rumbling around the house for now and talk when it seems right. Rod and I had some of our best comvensations in the week or so before he died. I feel so much empathy for you. Plese stay in touch. Mary Jo

[melissa1026]

Missy

How I relate to how you are feeling..... my husband has been very sick for a long time. The last 5 years have been nothing but a roller coaster ride of fear and sadness. I am thankful that he is still with me. W've been together 25 years. Each day that we have together is a blessing. I've been told on numerous occasions that he would not make it but he seems to have a determination to get better. I start to dread the dr apts a few days ahead wondering what they will tell him this time. I start to have stomach problems and sleeping........well I haven't slept well in years... listening for any sign of trouble. Making sure he's breathing each day before i go to work. It takes a toll on you mind and body. But we can get thru it. I have for a long time. I'm just so tired of being scared and dreading when it happens. People here understand how it is. My heart goes out to those that have lost a loved one. I am just taking one day at a time and trying to stay sane. It's comming up on 1 yr ago that my brother committed suicide and my husband has mentioned that he understood why my brother did what he did and that scares me also. Sometims you just wonder how much more you can take and then you think it's not about me . I just sometimes get in a pitty pool and wonder why me? The years have taken a toll on me and I am told there is a sadness around me... I try to stay upbeat and never let my husband know how much this hurts. he's going thur so much more than I am. It's just been so hard to see a man that was strong and cheerfull turn into somethat that can hardly dress himself and never smiles. Just wanted you to know that I understand your feelings. My thoughts and prayers are with you.

melissa

[alwaysmyjennifer]

Melissa, I share that lack of sleep thing. Even with PCAs (care aides) to help and take care of my wife through the night so I can sleep, I don't feel like I can trust them enough to sleep well. I continuously catch them asleep more than me. Just take care of yourself through this. You are important here too. I'm sorry you must also face the pain of losing your brother. This just adds so much to the dynamic of the sorrow. I'm praying for you. Hope you can feel some peace through all this. Mark

[ladyhitchhiker]

Today I am missing her terribly. I never can get to sleep in a timely fashion anymore. Is that depression or just a sleeping problem?

[jackiewitter]

Hi Ladyhitchhiker. I don't know if the sleep is part of the grief or not. I can get to sleep just fine, but I cannot stay there. Everymorning, right around 1am I wake up. That is when I usually go outside and sit on the swing out back and talk with my deceased brother. I've been doing it for almost 6 months now. I tried not getting up to see if that would help, but it doesn't. I still wake up so I might was well get up and go have a talk with him. I've tried everything, over the counter sleep medicines only make me groggy when I wake up around 1am, I still wake up. I have never had a problem sleeping before so the grief is the only thing that I can attribute it to. I am sorry that you are having a bad day, I will keep you in my thoughts and prayers today. Peace, Jackie

[alwaysmyjennifer]

Sometimes, we can't fall asleep cuz we are thinking of the one we lost. Soon after I heard about Jenni, I would go thirty hours or more without being able to fall asleep. Then, I'd have to take sleeping pills. It was a painful cycle. Sometimes, we fall asleep, even if out of exhaustion, but then, dreams or other factors wake us and we can't get back to sleep. These are all normal parts of grieving. If they become issues that interrupt your life routine, talk with your doctor about a short course of Ambien CR, maybe a month of it. This will help your body and mind relearn to work together within the parameters of grieving, so you can sleep while you grieve. It's a serious difficulty, one we all have to address.

[jackiewitter]

Mark, it is so wonderful to see your words again. Funny world we live in isn\'t it. While so sad the bond we share, it has been so very comforting to find friends who truly understand and can offer some solace because they have and are traveling the same bumpy road. I was quite worried for and about you and though I know things are so very difficult for you it is wonderful to see your writings again. Please do not hesitate to lean on me if I can help, I am quite new at this grieving thing, I had a two year break between my father and my brother, so unfortunately I am sharpening my skills. The awakening does not bother me as much anymore, it has become a part of who I am now. When I awake I go outside and visit at my brothers garden, then I go and check on my sleeping kids and quietly try to get back to bed. I try to be careful with medications, a little bit seems to make me quite loopy, I am goofy enough as it is. Tell me about your grandchildren, I have two young grandsons and I find them a good source of comfort. I just wanted you to know that I had missed you and was thinking of you. Please tell your precious wife that she is in our prayers as well. If I can do anything, please let me know. Much love and peace, Jackie

[scared]

I am so glad I found this site. I have tried to talk to Hospice about a support group for caregivers but all they have is for after. Somtimes I get so down watching John that I can't do either one of us any good. We have only been married 10 yrs.,we have had cancer the last 7, and like ya'll grow old together,but now that is not going to happen. I feel lost and I can't find my way back. I hardly go any where because I don't want to leave John for any length of time. My Mom lives in another state and she has cancer, I'm really thankful I have a sister that lives close and she takes care of her.

You are all in my prayers. Helen

[Edmund]

sleeping is difficult; i'm up til 4am every nite ( work evenings). just remember where there's life there's hope; mom died 8/22/06 & i was the caregiver for many years (she was 87 w/ms), but what i would do to be the caregiver again!diapers, hoyer lift & all; i would do anything for one more day w/ mom...ed

[scared]

Ed, Somtimes I can't sleep for days. Then when I do it's just for alittle while. I am thankful for every day I have with John. He is my life. I guess I'm scared of the unknown. I really worry about my MOM, but right now my sister says she is holding her own. I try to talk to her every day. Her short term memory isn't very good, so we can talk for awhile. Take care and I say a pray for you. helen

[missey]

HI Scared,

Your story sounds so like mine, John and I have been together for 8 years and he has cancer. His treatment wasn't successful and that was last May, so we're on borrowed time. I understand exactly where you are coming from. He has a lot of fatigue so I try to be available when he is awake but I have to work since we're on one income now. Sometimes, when he is awake, he wants to be alone. There is so much to cope with, dealing with his mortality, and how he wants to spend his time. He was told 8-14 months last May so we feel the clock is ticking. But we also know that is a best guess statistic so we try to be hopeful and continue to look forward to each day. Sometimes it works, sometimes it doesn't.

I do ok when I know he's having a good day, it's SO much harder when he is in pain. Such a rollercoaster.

Do you have children Scared?

Hang in there

Missey

Ed, Somtimes I can't sleep for days. Then when I do it's just for alittle while. I am thankful for every day I have with John. He is my life. I guess I'm scared of the unknown. I really worry about my MOM, but right now my sister says she is holding her own. I try to talk to her every day. Her short term memory isn't very good, so we can talk for awhile. Take care and I say a pray for you. helen

[scared]

Missey: What kind of cancer? John's is advanced prostate. We have 5 kids,I have 2 boys 34 & 20. The 20yr old lives at home to help take care of his dad. John has 3, 2 girls 32 & 17 and a boy 29. John oldest girl talks to her dad maybe once every 2months the boy never calls. The 17yr old just had a baby Dec. 29th. She still lives with her mom, but they come up on the weekend. But for the most part it is just me and James that take care of John. James was 10yrs old when John and I got married so John is the only dad he knows. And since he is around him all the time he sees John getting sicker by the day. Yes it is very hard when they are hurting and sometimes John feels so bad that he gets mean. I know that he doesn't mean it, but it still hurts. Thanks for writing I'm really glad to find they I'm not alone. Is your husband on Hospice? Do ya'll have any kids? Talk later, helen

[missey]

Hi Helen,

We're much the same with kids, John has 2 - a daughter 26 (newly married to a very sweet man) and a son-29. I have a daughter 26 as well. My daughter lives in London, England so we talk every couple of weeks. John's kids are very close and call regularly. Each is so different in how they are handling this terrible illness with their dad ( he has lung cancer that wasn't diagnosed until it had spread to the lymph nodes) Jill (John's daughter) bounces from needing to be with us for every test and to know all the details, to greaving all the things that will be lost...i.e. her babies will not have their grandfather etc.

Chris, just wants to spend time with his dad and to show his love. They don't actually see him suffer too much so when they do, it scares them and they start calling every day but that fades as their own lives take over. We encourage them to try to balance things and live their lives.

We also have John's mother *84 yrs old) who is still healthy and has her own place. She is so upset that John might go before she does, I'm not sure how she will handle losing her only child but that's something for the future.

I find this a very lonely process...John tries to be there for me and it hurts him that I am sad when he suffers but hey.. what can you do when you love them.

John also gets angry when he's scared, everytime he has an increase in symptoms, he fears that he is taking another progression of the disease. It's not personal, it's a sign that he's suffering. Does he have medications that will control his discomfort? John also withdraws sometimes.. I just assume he's trying to come to grips with the fact that he is dying. That alone would be tough.

he wants to die at home so I've looked into all the services we will need and what's covered by our health plan. I've even talked to a couple friends about what it will be like as his lung cancer progresses. It's not a good death from what I've found.

I think the most difficult part is that I can't fix it! I research everything I can find to givve him symptom relief and to keep his health up. All through Chemo, and even until today, he is within 5 lbs of his original weight. It's just so hard to hear him breath... he tells me he has more chest discomfort.

I told him I could handle it, to have him stay at home... but the paliative health nurse I spoke to said it will be hard for me... that he will have panic attacks when he can't get enough air...but I want him to stay here where he wants to be. he asks me if his staying here to die, will make our home filled with memories of his death and that I won't be happy here anymore. How can I know? I don't even know how I'll handle it all. I just know this is a part of life.. and I will try my best to give him a dealth with dignity and family around.

It is a lonely position though...nobody can do it for you.

Missey: What kind of cancer? John's is advanced prostate. We have 5 kids,I have 2 boys 34 & 20. The 20yr old lives at home to help take care of his dad. John has 3, 2 girls 32 & 17 and a boy 29. John oldest girl talks to her dad maybe once every 2months the boy never calls. The 17yr old just had a baby Dec. 29th. She still lives with her mom, but they come up on the weekend. But for the most part it is just me and James that take care of John. James was 10yrs old when John and I got married so John is the only dad he knows. And since he is around him all the time he sees John getting sicker by the day. Yes it is very hard when they are hurting and sometimes John feels so bad that he gets mean. I know that he doesn't mean it, but it still hurts. Thanks for writing I'm really glad to find they I'm not alone. Is your husband on Hospice? Do ya'll have any kids? Talk later, helen

[rodless]

Missey, my husband died at home from lung problems due to complications from chemo for lymphoma. He was on 15 liters of oxygen (2 concentrators hooked together)with a full mask and he did sometimes have panic attacks when he felt he could not get enough air. I learned to calm him down and "breathe" with him. As he watched me he would calm down. Hospice is wonderful if you have that service available. Near the end morphine helped with the struggle for air but he was not as consious and could not communicate very well. The last words he spole were "I love you very much."

Rod passed away in our bedroom and while I know everyone is different, I would not have wanted it any other way because that is where he wanted to be... home with me. My kids (26 & 28) were a great help. His four (ages 41-45) were too busy being upset with our decisions and their own discussions to be available for their dad when he really needed them. They could not face the fact he was losing ground rapidly and by fighting that, they missed out on the last day of his life. I feel bad for them as they will never recover from that. My kids and I have a feeling (as much of possible) of peace because we honored Rod's decisions and needs.

I hope this message is more help than distress for you. I know this is all terribly hard to hear but I wish someone had shared with me. I so understand what you are facing. And.. it's ok if you are sad or if he's angry as long as you understand each other and know that your love supercedes it all.

God bless you both! Mary Jo

[missey]

Hi Mary Jo,

Your letter was no more distressing than any of the information I've been getting. It's better to have the honesty and try to prepare for whats coming. I think that the more times I talk about what might come at the end of John's life, hopefully, the better I'll be able to handle it. I'm not worried about doing what needs to be done, I'm more worried about trying to do it with calm loving and not fear. Fear of the unknown is worse.

I told John about your message and it made him happy to know your husband was able to die at home, it's very important to him to stay here in familiar surroundings. We always call home 'our haven'

We have a review with his radiation oncologist tomorrow.. so we'll see how he's doing, not just how he's feeling.

Thanks sharing your experience... even John had some relief and for that I thank you

How are you holding up? I just realized you only lost your husband last summer?

Too bad we all live so far apart

Sherry

Missey, my husband died at home from lung problems due to complications from chemo for lymphoma. He was on 15 liters of oxygen (2 concentrators hooked together)with a full mask and he did sometimes have panic attacks when he felt he could not get enough air. I learned to calm him down and "breathe" with him. As he watched me he would calm down. Hospice is wonderful if you have that service available. Near the end morphine helped with the struggle for air but he was not as consious and could not communicate very well. The last words he spole were "I love you very much."

Rod passed away in our bedroom and while I know everyone is different, I would not have wanted it any other way because that is where he wanted to be... home with me. My kids (26 & 28) were a great help. His four (ages 41-45) were too busy being upset with our decisions and their own discussions to be available for their dad when he really needed them. They could not face the fact he was losing ground rapidly and by fighting that, they missed out on the last day of his life. I feel bad for them as they will never recover from that. My kids and I have a feeling (as much of possible) of peace because we honored Rod's decisions and needs.

I hope this message is more help than distress for you. I know this is all terribly hard to hear but I wish someone had shared with me. I so understand what you are facing. And.. it's ok if you are sad or if he's angry as long as you understand each other and know that your love supercedes it all.

God bless you both! Mary Jo

[rodless]

Sherry, most days I do okay. Monday night I sat and sobbed for quite awhile, but it is easier to pull myself togother now than it was even a month ago. I have found that sometimes the memories of a healthy, happy Rod still bring lots of pain because I want him back that way. When I think of his last few months, then I am more at peace. I went through a divorce +20 yrs ago and I learned some coping skills that are helping me now. And I know Rod would never have left me if he could have avoided it.

I am glad my message helped your husband. Rod was so happy to be home and have me with him most of the time (I was trying to work fulltime.) We had the room set up with a hospital bed and a couch so his friends stopped in to see him, the neighbors brought their new puppy over and he could have his beloved dog with him. He had spent 6 weeks in the hospital and he told me even the smell of the sheets was a comfort. Familiar surroundings were a great blessing to him even though he was confined to the bed. And hospice was wonderful. I will never be sorry we did it this way. His spirit lingers in our room and brings me comfort.

As far as handling things, when the time comes you will do things calmly and gracefully because you love John. If he's like Rod, he will help you through the times you need to fall apart or you can cry together. I loved that man with all my heart and soul and the greatest gift he gave me was the same thing in return. His final days were extremely difficult but they were the epitome of how we felt about each other. It can be that way for you, too. Keep coming here and I will help you as much as I can.

Mary Jo

[witsend]

VERY depressed!!! Have been for some time now, but the events of the past week have taken a toll on me. My Father was in CCU past 2 days...elevated heart rate...he has COPD...CHF....atrial fib..is an amputee..15 months ago he completed radiation for cancer...one team of doctors have told us they got it all...now, this new team is saying he still has it???? and it is inoperable???????

My Father is 30 miles West of me in a regional hospital; while my Mother is 41 miles East of me in skilled care...where she is paralyzed from the waist down, due to a spinal injury/fall/osteopororis combo.....and is legally blind...macular degneration...

I have...excuse me, my parents have 3 other kids who left home at a young age and basically alienated themselves from us...one of them will phone...MAYBE 3 X a year...to ease their own conscience..nothing more. I have told my parents other kids just what I think about the way they have treated Mom and Dad...and trust me, you would not want it posted in this forum!!! But...use your imagination!!! See...these other siblings are much older than myself...(I am the youngest by about 14 years)...so...the likelihood that my parents other kids will need me one day is high!!!

I feel so suicidal...how in the ___ can one set by and helplessly watch his parents decline???? I so wish i could take their ailments for them....if I could cry anymore, it would help, but honestly...I can no longer produce many tears. I tried "professional" help over the past years/months....listening to a "pro" tell me I must cope and focus on the good...while I am still suffering and making this "pros" Mercedes payment is not beneficial. Neither are the many anti-depressants I have tried.....

To top it all off, I went thru a divorce 3 years ago (no kids)....but that was a great thing, since the spouse I had did not offer to help my parents either. And at the time, my parents' ailments were nothing like they are now.

I wish I could clone myself...so I could visit them both each day, but with a hectic work schedule...(bills fdo not stop when sickness starts)...that is not feasible. However, since my Mother IS stable...I have leaned towards seeing my Father daily...and I feel bad about that. Then...when i do visit one...I am reluctant to inform them about the health of the other...for it may trigger new unwanted health issues:(

ANY and all advice ANYONE may give...I would so appreciate!!!! For, I feel you guys, have a much better knowledge and can relate to these cicumstances, than a "professional" who can not wait to get to the golf course.....

[mofirefly]

Witsend - Unfortunately no easy solutions seem to be present. Do you have anyone at all that is providing you with support. Have you contacted any/all agencies for the aging to see if you parents are qualified for any help. Would it be at all possible to transfer your mom to a home closer to where your dad is at. These are just thoughts going thru my mind. The situation you are in is too much for one person alone to try to handle. Not to upset you, but do either of your parents qualify for hospice care....they provide so much support not only for their client but for the family as well. Again, hope that suggestion doesn't offend you. Your anger is justifiable, but it is also taking a lot of your energy away from you. Come to the different forums here and seek advice from those of us who may not be "pros" but we are a bunch of people who are hurting and looking for help from others, while at the same time trying to help others who are hurting. Please take care.

[witsend]

Thanks Mofirefly! My parents qualify for no help:( But...some hospital staff have suggested Hospice. I could transfer my Mother to a closer facility, but the closer ones do not provide the quality of care, have the high inspection ranking, etc..plus she is so settled there now. I have the true screen name of...Witsend...

[mofirefly]

Witsend - Here's another thought - have your tried contacting people at senior centers or churches that would be willing to go and visit with your mom on the times you are visiting your dad. As a caregiver myself, remember you must take care of yourself in order to care for them.

[Guest Guest]

Hello, I stumbled upon this site as I sit watching my father die of Advanced Renal Cell Carcinoma. He now has bone, lung and liver metz. He was diognosed over a year ago and we promised him we would not let him die in a hospital. My mother has been the primary care giver along with my brother and myself. Hospice was brought into the picture about 2 months ago, and they have been wonderful!

I know my father is at the end of his journey through life. Yesterday, after being unresponsive for 3 or 4 days he became violent, verbally abusive, and then progressed to talking nonesense. Today, he has a horrible rattle in his chest, so I know it won't be long.

My mother has been a rock. We are a private family and choose to grieve in silence. I think myself and my husband are the only two in the family who have really cried. To see him suffer such as he is, is hard to watch. I feel guilty saying this, but I wish his pain would end.

I guess I needed to get that off my chest. Thankyou for allowing me to post this. I'll pray for everyone here.

[rodless]

Guest, it is such a helpless feeling to watch someone you love suffer and not be able to do anything about it. I think the grief journey begins before death in cases like yours. I know mine did. My husband died under the care of Hospice after being ill for several years and in the hospital six weeks.Your father will be at peace soon. I hope that knowledge brings you peace also. Mary Jo

[jenniferkleine]

Guest, it is such a helpless feeling to watch someone you love suffer and not be able to do anything about it. I think the grief journey begins before death in cases like yours. I know mine did. My husband died under the care of Hospice after being ill for several years and in the hospital six weeks.Your father will be at peace soon. I hope that knowledge brings you peace also. Mary Jo

Mary Jo,

I am the guest you replied too. Thankyou so much for your kind words. At this point I'm in a state of anticipation, more than anything. Anticipating my dads death and what I will need to do at that time. I reached my breaking point today. Being with dad, making sure mom was taking care of herself, organizing a benefit...its all been overwhelming. My wake up "call" was a phone call i got today from a friend helping to organize the benefit. She asked me, "do you realize you emailed me at 2 am?" I fianlly had to admit, I was burning the candle at both ends.

I am the only one in the family with a medical background (surgical tech), everyone is looking to me for answers. I dont have any, except this....

Take time for yourself, read a book, clean, sit on your porch, whatever. You cannot help anyone else, if you're not well rested yourself. It took me two weeks and alot of restless nights to realize that.

I am sure I will be posting more..but for now...take care of yourselves. You are all in my thoughts and prayers.