For those of us with NOT SO ROSY caregivers

2

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  • eibod
    eibod Member Posts: 160
    Buckwirth said:

    Caring for the Caregiver

    ...for 2 years I have never asked another soul to take him to chemo, fluids, labs, numerous surgeon appointments....



    eibod,

    What you describe here is the reason many primary caregivers burn out. As a patient, I look for someone other than my wife to take me for fluids, labs, chemo, and the various other things that this disease entails.

    Being a caregiver does not (and should not) mean doing it alone. When my mother had pancreatic cancer, my father was the primary caregiver, but both my brother and I spent every minute with him and with her helping out where we could. This meant that my dad had time to himself, to recharge his battery.

    Part of being a caregiver for Pete43's wife was running the family business.

    Marie mentions her disappointment in her husband, but in other posts has praised how her kids stepped up their game.

    The caregiver is rarely a single person, rather it should be a team, one is primary, but the others help keep everyone sane as well as healthy.

    Here is a site that should help:

    LIVESTRONG Get Help
    You are right, I should have
    You are right, I should have others take him to appointments. When I mention this, he says
    something like "I know I am such a burden" and then I feel guilty again. My best friend
    lost her husband to cancer several years ago. She has always told me to try and never do or
    say anything that I would regret later. I am trying awfully hard to follow that advice. I
    guess I feel that if he feels more comfortable with me taking him to appointments, than that is the least I could do. I want to try to keep going as long as I can, I don't know
    what will come and at what time I will no longer be able to handle things. I will certainly look at the site you referred me to. Take care, Brenda
  • laurettas
    laurettas Member Posts: 372
    Buckwirth said:

    Caring for the Caregiver

    ...for 2 years I have never asked another soul to take him to chemo, fluids, labs, numerous surgeon appointments....



    eibod,

    What you describe here is the reason many primary caregivers burn out. As a patient, I look for someone other than my wife to take me for fluids, labs, chemo, and the various other things that this disease entails.

    Being a caregiver does not (and should not) mean doing it alone. When my mother had pancreatic cancer, my father was the primary caregiver, but both my brother and I spent every minute with him and with her helping out where we could. This meant that my dad had time to himself, to recharge his battery.

    Part of being a caregiver for Pete43's wife was running the family business.

    Marie mentions her disappointment in her husband, but in other posts has praised how her kids stepped up their game.

    The caregiver is rarely a single person, rather it should be a team, one is primary, but the others help keep everyone sane as well as healthy.

    Here is a site that should help:

    LIVESTRONG Get Help
    An ideal
    That is an ideal situation, Blake, but one that many of us are not able to do. When my husband had cancer the first time, I did all of the care-giving except for a few weeks after our baby was born and our mothers came up. All our family lived miles away unfortunately. Ten months of intense work, keeping him fed, supported emotionally, filling in with the physical tasks he could no longer do even tho I was pregnant or had a newborn. That was life. Was it hard? You bet, took me about ten years to recover emotionally but we had no choice.

    Now we are in a situation where we moved, have not made new friends and our family members that live close are my parents who are over 80 and our daughter who has five children 8 and under. They need OUR help and it would be a huge burden on them to ask them to help us. I have asked some family members for assistance for certain things but they won't help so either we just do it ourselves or it doesn't get done. You can't force people to help if they don't want to so you have to do what you have to do.
  • laurettas
    laurettas Member Posts: 372
    Sundanceh said:

    For Brenda and All the Caregivers....
    I wrote this chapter a few months ago, but this post seems relevant for me to post some excerpts about this very hot topic.

    From the Caregiver's perspective:

    They are the first ones in line to stand by our sides when we are just starting out. They are the last ones in line if we end up approaching an end-of-life scenario. They will be the “Last of the Mohicans” left standing when it’s time to pick up the pieces of their lives, when all is said and done and the tears have stopped.

    BREAK

    What these relationships represent for all of us is the “First and Last Line of Defense” in our cancer battles. They are the first ones in line to stand by our sides when we are just starting out.

    “Remember the words we promised each other in our wedding vows – In Sickness and In Health?”

    “They were just words back then, right?”

    None of us ever really thought we would have to “Cash in that Chip” and actually have to take on that kind of responsibility when we said “I Do”.

    We were young and healthy then with our whole lives stretched out in front of us. So when the minister uttered that phrase during the ceremony, we happily nodded our heads in agreement and hoped that this day would never come.

    “But, it did come, didn’t it?”

    Just like that, the life that we thought we knew was gone forever with those three little words from the opening chapter.

    BREAK

    I think that the caregiver role must be extremely difficult to handle for many reasons. To begin with, the first rule of thumb is that the caregiver now looks at their partners and begins to envision a life without them for the very first time.

    That’s a lot to chew on with the first bite and can be very disconcerting for us to come to grips with. A lot of us have families with children and you’re left thinking to yourself how are you going to do this without my soul mate? These are sobering thoughts to have to contemplate. There’s a part of your brain trying not to think about it, but then there’s that corner of the mind that just can’t help thinking about it either.

    These are not morbid thoughts; rather they are just human nature. You can’t help but stare down the road at a possible reality and acknowledge what could be your situation. It may not happen of course, but this is just part of your survival mechanism that is tapping into your subconscious and “Acting Out” on you.

    Please do not beat yourself up over this. It does not mean that you have given up or are thinking the worse. It’s the survivor mode mentality that we talked about earlier, and let’s face it, SURVIVAL is the strongest instinct that we have going for us. It’s only normal to have thoughts about “What’s Next After This?”

    BREAK

    Yes, it’s a tough and thankless job, even on the best of days and circumstances. We often don’t say “Thank You” or “We Love You” or even better, “We Appreciate You” nearly enough. Some of us are so thoughtless, that we never get around to saying it.

    So, let’s “Right this Wrong” while we are thinking about it. All of us take a moment here and reach over and hug our partners and tell them how important they are to us and how we really value their unselfish service and commitment. We don’t want to think about a world without them in it. They really do make our world spin on its axis.


    FROM THE PATIENT'S PERSPECTIVE:

    Well, to start with, we feel helpless and even worthless at times. This is not the way that we wanted it. This is not the way that we drew it up on the map. We have these feelings because we have lost our ability to contribute to the common cause and we are forced to temporarily sit on the “Sidelines of Life” as the parade goes marching by.

    At a much deeper level, we are feeling vulnerable and weak. Where we once had strength, we now feel tired and puny. We begin to wonder to ourselves if we are ever going to get back to a fraction of the person that we were before. This scares us a little because for so long we’ve stood on our own two feet, made our own decisions, and handled our own business. Now we need some help and we’re not very good at needing help, are we?

    BREAK

    Whether we are the patient or the caregiver, there will be a lot of give and take as the battles wear on. There will be times when things are thin – and other times they are flush. Sometimes we are the windshield – other times we are the bug.

    Cancer is going to beat on us and there will be times when either party might just want to throw in the towel. It’s during these trials that we must be our strongest, because as with any storm in our lives, this too will pass if we can just weather through it.

    BREAK

    Where once we were able to do for ourselves, we now find ourselves relying on our caregivers to have all of our needs met. As time goes by and we can begin to do the little things for ourselves once again, we find that we have moved off the physical reliance and over to emotional reliance with our partners.

    Caregivers were already taking the physical needs off of our plates and now for dessert, we throw in our emotional needs and expect them to step up and take care of those as well.

    “Are we asking too much?”

    Unfortunately the answer is yes we are. No one person can be the “One Stop Shop” for all of our partner’s needs - and this is true even without cancer, much less with it.

    If we are not really careful all of this will eventually build to a crescendo. After all, a person, even one who loves you can only take so much before they begin to crack, break and start to show signs of stress.

    This is going to lead you down the path towards those tried and true feelings – “Bitterness & Resentment.”

    BREAK

    I guess what we really want is for them to “Kiss it and Make it all Better” just like when we were kids and scraped our knees on the playground. I suppose at the basic root of the issue is that we really want to be nurtured and comforted.

    BREAK

    Ultimately, what I think the caregiver is really feeling is the accumulation of everything that they have to deal with since your journeys both began and in a word it’s called SUFFOCATION.

    It’s easy for their feelings to turn to bitterness towards you. They are angry that all of this is happening to you and them. They are upset that your treatment plan is not going according to their timetable that they want you to have. They just want things to get back to the way they were before all of this.

    This makes it easier for resentment to set in as well. Since they are doing so much for you to care for your needs and are currently not having their needs met, they are a little miffed at you for not being there for them.

    Now, they understand that you are sick and not yourself, but still they are ticked off at you in a certain respect, plain and simple. Sorry but that’s the truth of the matter. This doesn’t mean that they don’t care for you – they are just really mad at the overall situation and don’t have a good avenue to vent their hostility, so by default you get the brunt of their frustration.

    Cancer just loves a “House Divided.” It makes it much easier when it sees the home team coming apart at the seams and in disarray. Cancer is a dirty fighter and will take any angle to drive a wedge between you and your partner.

    BREAK

    Please forgive us?

    I want to thank all of the caregivers for all of the sacrifices that you make for us, we really do need you and appreciate all the things you do and how much of your time that you invest with each one of us. You have my utmost admiration for all of the work that you do and the kinds of people that you are. You are a very special group of folks.

    Thank you everybody - I know Brenda has been having an extremely difficult time and said "someone should write a book on how people should feel." I'm in the process of doing just that for people just like her. This is part of my caregiver chapter.

    With much love and respect to all:)

    -Craig

    Craig,
    you have such wonderful insights into the inner workings of this path that we are all on. Thanks so much for taking the time to put it in words. It's so nice to see what you are keeping stuffed inside expressed so well. Helps to know that you are not the only one having these thoughts and struggles!
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    laurettas said:

    An ideal
    That is an ideal situation, Blake, but one that many of us are not able to do. When my husband had cancer the first time, I did all of the care-giving except for a few weeks after our baby was born and our mothers came up. All our family lived miles away unfortunately. Ten months of intense work, keeping him fed, supported emotionally, filling in with the physical tasks he could no longer do even tho I was pregnant or had a newborn. That was life. Was it hard? You bet, took me about ten years to recover emotionally but we had no choice.

    Now we are in a situation where we moved, have not made new friends and our family members that live close are my parents who are over 80 and our daughter who has five children 8 and under. They need OUR help and it would be a huge burden on them to ask them to help us. I have asked some family members for assistance for certain things but they won't help so either we just do it ourselves or it doesn't get done. You can't force people to help if they don't want to so you have to do what you have to do.

    Laurettas,
    Family is an ideal, but I am aware that it does not always work.

    Here is another way of looking at it;

    Some people have no family, no spouse, no significant other. How do they get by?

    In most communities there is some kind of social service, then there are support services offered through folks like ACS and LIVESTRONG.

    Free rides to the doctor are available in many communities, in some places there are people who will come and clean your house, in others folks who will deliver meals.

    Help is out there, but the caregiver needs to ask for it, and needs to take care of themselves so they can take care of the patient.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    I think the sadesset thing is
    I took him to the doctor two months ago, finally got him to go, the doctor confirmed everything I had been telling him, which mostly is, if you don't stop drinking you are going to die. He already has ataxia, (means he walks slow, wide apart legs shuffling gate, pretty much like a 90 year old man, unsteady as well I have to walk slow and help him at times). He's weak from muscle loss (again alcohol)so that he struggles to get out of bed, I have to pull him out a lot of the times or else he struggles like a turtle upside down.
    The saddest part of all of this is he started drinking when I was going to die, he had doctors, nurses etc., all telling him this, while I stayed strong, he was going downhill over it fast, it wasn't that we had trouble in our marriage, h@ll it's been mighty fine until cancer, you see, the sad part is he didn't want to go on with out me, and now here I am going to live a lot longer (I hope)and he got so stuck in the sadness and bottle, he just can't find his way back out. So I'm watching my husband die a slow death and there's no stopping him. So I hope that caregivers read this, and if it all seems too much, whatever you do, don't start to drinking every day to deal with it. Find a pill, find a pysch, something not harmful to yourself.
    Winter Marie
  • laurettas
    laurettas Member Posts: 372

    I think the sadesset thing is
    I took him to the doctor two months ago, finally got him to go, the doctor confirmed everything I had been telling him, which mostly is, if you don't stop drinking you are going to die. He already has ataxia, (means he walks slow, wide apart legs shuffling gate, pretty much like a 90 year old man, unsteady as well I have to walk slow and help him at times). He's weak from muscle loss (again alcohol)so that he struggles to get out of bed, I have to pull him out a lot of the times or else he struggles like a turtle upside down.
    The saddest part of all of this is he started drinking when I was going to die, he had doctors, nurses etc., all telling him this, while I stayed strong, he was going downhill over it fast, it wasn't that we had trouble in our marriage, h@ll it's been mighty fine until cancer, you see, the sad part is he didn't want to go on with out me, and now here I am going to live a lot longer (I hope)and he got so stuck in the sadness and bottle, he just can't find his way back out. So I'm watching my husband die a slow death and there's no stopping him. So I hope that caregivers read this, and if it all seems too much, whatever you do, don't start to drinking every day to deal with it. Find a pill, find a pysch, something not harmful to yourself.
    Winter Marie

    So sorry
    to hear about your husband's struggles, Marie. Sounds like he might be trying to kill himself so he doesn't have to face the possibility of you dying. Could your kids maybe talk to him and let him know how important he is to them and that they need him, too? Sometimes we get so wrapped up in our own fears and worries that we forget that others need us and the effect we are having on them. Hope he can gain control over the drinking, for all your sakes.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Winter:)
    Here's a story that I never told you yet - until today. I felt the need to write you after reading your last entry about your other half and what's going on there.

    First, I'm sorry that it's like that. I have no idea of how that must affect you on a daily basis, weekends and holidays included. I'm sure at the root of all your feelings, I'm thinking that you do not feel valued from your husband's reactions to your cancer.

    What I see from the sidelines over here, is that your husband really "doesn't get it." It shows me that he has no understanding of what you've been through and the huge significance in the victory that you achieved.

    "From worst to 1st" is one he11 of a turnaround in my personal opinion. The things you had done to get you to a watch and wait state were truly remarkable. It's a pity that your other 1/2 was seeing it through foggy goggles. I can tell you he really missed out. And that's his loss.

    The other thing, is that at the moment and hopefully for the forseeable future, you are now 'clear' and not having to undergo surgeries or harsh treatments. You are putting your life back on track and taking charge of yourself. You are growing as a person, while your hubby is dying as a person.

    Cancer is a disease, but so is alcoholism. It appears that he is on that bandwagon now, with no intent of hopping off...I'm sorry.

    Now, what I wanted to tell you was this. All of those months when I was home sick out of my mind and hoping for death, I would think of you on some of those days around 4p my time and 2p for you.

    With the few brain cells, I had remaining, I would be thinking well Winter's husband is home now about 2pm and he's probably got the bottle in his hand going at it - it's going to be another long night.

    And I thought about it more than once - more than once or even twice. When I would go to bed, I could still see your husband pouring one more. I could see this abstract vision in my head. I heard you talking about this one day about how he would come home and start up ,night after night.

    This reel played over and over again, and it just made me sad. Maybe, he started out to numb his feelings about your impending doom - and after you made it, maybe it was too late for him, or maybe he just didn't want to change his ways. Or maybe he is sick with his disease, that he no longer cannot on his own.

    I'm not the inspiration around my household either, but my spouse is not trying to kill herself. Seeing you triumph and win a major battle while your hubby gives his life away is truly heartbreaking.

    We only get one life - and I guess it's up to each one of us to make the hard decisions on how we are going to do that.

    I would love something more for you. It's just got to be hard on you mentally and apparently physically now, with the things you have to do for him.

    Some people are fighters and others are less than that...you know what you are:)

    This is a trying time and I can't just bull$hit this one away....but you already know that.

    Be good to yourself, because it seems you will be the only one who can be.

    -Craig
  • High Desert
    High Desert Member Posts: 4
    Sundanceh said:

    Winter:)
    Here's a story that I never told you yet - until today. I felt the need to write you after reading your last entry about your other half and what's going on there.

    First, I'm sorry that it's like that. I have no idea of how that must affect you on a daily basis, weekends and holidays included. I'm sure at the root of all your feelings, I'm thinking that you do not feel valued from your husband's reactions to your cancer.

    What I see from the sidelines over here, is that your husband really "doesn't get it." It shows me that he has no understanding of what you've been through and the huge significance in the victory that you achieved.

    "From worst to 1st" is one he11 of a turnaround in my personal opinion. The things you had done to get you to a watch and wait state were truly remarkable. It's a pity that your other 1/2 was seeing it through foggy goggles. I can tell you he really missed out. And that's his loss.

    The other thing, is that at the moment and hopefully for the forseeable future, you are now 'clear' and not having to undergo surgeries or harsh treatments. You are putting your life back on track and taking charge of yourself. You are growing as a person, while your hubby is dying as a person.

    Cancer is a disease, but so is alcoholism. It appears that he is on that bandwagon now, with no intent of hopping off...I'm sorry.

    Now, what I wanted to tell you was this. All of those months when I was home sick out of my mind and hoping for death, I would think of you on some of those days around 4p my time and 2p for you.

    With the few brain cells, I had remaining, I would be thinking well Winter's husband is home now about 2pm and he's probably got the bottle in his hand going at it - it's going to be another long night.

    And I thought about it more than once - more than once or even twice. When I would go to bed, I could still see your husband pouring one more. I could see this abstract vision in my head. I heard you talking about this one day about how he would come home and start up ,night after night.

    This reel played over and over again, and it just made me sad. Maybe, he started out to numb his feelings about your impending doom - and after you made it, maybe it was too late for him, or maybe he just didn't want to change his ways. Or maybe he is sick with his disease, that he no longer cannot on his own.

    I'm not the inspiration around my household either, but my spouse is not trying to kill herself. Seeing you triumph and win a major battle while your hubby gives his life away is truly heartbreaking.

    We only get one life - and I guess it's up to each one of us to make the hard decisions on how we are going to do that.

    I would love something more for you. It's just got to be hard on you mentally and apparently physically now, with the things you have to do for him.

    Some people are fighters and others are less than that...you know what you are:)

    This is a trying time and I can't just bull$hit this one away....but you already know that.

    Be good to yourself, because it seems you will be the only one who can be.

    -Craig

    Not so rosy caregivers
    After reading your post yesterday I called my sister yesterday to find out how she was feeling as her back went out Friday and was in quite a bit of pain. she told me the day before her husband told her if she went down he was out of there,because he just couldn't take care of her and left to go fishing. I wanted to go over there and kick him in the head. My sister and I have been through so much this last year it just broke my heart anyone could hurt her like this. Last April my brother who was living with my father 87 yrs old, started talking funny and stumbling around, he had no health insurance or money. We thought he might have had a stroke he was 53. Took him to emergency they did a MRI and he had a tumor on his brain the size of a large grapefruit. They did a craniotomy on him the next day and he was his old self the next morning so gratefull to be alive. The next morning before we got to the hospital the doctors came in and told him it was lung cancer that had mestastsized to his brain. I immediately told my job I needed time off but could not get fmla for a sibling so I said i would use up my vacation time I had never been able to use. So began the journey he was okay for a few weeks through radiation and the chemo didn't affect him too bad he was a very strong man. I wanted to be sure he could get the best care available and be with him I know he was scared. My husband was wonderful about me staying at my dads only a couple miles away and neglecting him. My sister who was retired and lived two blocks away from my father was helping out also but not as much because her husband just couldn't understand why she had to go over there so much and made her feel guilty about neglecting him. My brother was paralyzed in his left leg the last month and literally had to crawl out to the car to get to treatments. During this time my father who was pretty healthy had a heart attack so there was no way I could take up all the slack and still my sister's husband was haranging her about "their Life". My vacation ran out and they said they couldn't hold my job open after 30 years of service I had to retire at 59, my husband didn,t say a thing although it would signifcantly affect our income and he would have to work more. My brother died two weeks later with his sister's holding his hands. One month later I was diagnose with rectal cancer had surgery and ended up with permanent colostomy and now on chemo my husband has been just wonderful though all this and even said he would have thought less of me if I hadn't done what I did and was my rock through it all. My sister husband was nothing but a selfish self absorb jerk and if any thing happens to him I will be the first to remind him how callous he was. So I know from both sides how hard this journey is for care takers and as a patient my brother was 5 years younger than me and was my best friend along with my sister. A week afer the anniversary of his death we were lookinf for a insurance check at my father's and I found two cards one for me and one for my sister from our brother thanking us for all we had done and how he never knew how much we loved him, it was so wierd that we hadn't seen them before and we just broke down and cried,it just isn't fair anyone should have to die from cancer in this day and age we should already have found a cure.
  • wolfen
    wolfen Member Posts: 1,324 Member

    Not so rosy caregivers
    After reading your post yesterday I called my sister yesterday to find out how she was feeling as her back went out Friday and was in quite a bit of pain. she told me the day before her husband told her if she went down he was out of there,because he just couldn't take care of her and left to go fishing. I wanted to go over there and kick him in the head. My sister and I have been through so much this last year it just broke my heart anyone could hurt her like this. Last April my brother who was living with my father 87 yrs old, started talking funny and stumbling around, he had no health insurance or money. We thought he might have had a stroke he was 53. Took him to emergency they did a MRI and he had a tumor on his brain the size of a large grapefruit. They did a craniotomy on him the next day and he was his old self the next morning so gratefull to be alive. The next morning before we got to the hospital the doctors came in and told him it was lung cancer that had mestastsized to his brain. I immediately told my job I needed time off but could not get fmla for a sibling so I said i would use up my vacation time I had never been able to use. So began the journey he was okay for a few weeks through radiation and the chemo didn't affect him too bad he was a very strong man. I wanted to be sure he could get the best care available and be with him I know he was scared. My husband was wonderful about me staying at my dads only a couple miles away and neglecting him. My sister who was retired and lived two blocks away from my father was helping out also but not as much because her husband just couldn't understand why she had to go over there so much and made her feel guilty about neglecting him. My brother was paralyzed in his left leg the last month and literally had to crawl out to the car to get to treatments. During this time my father who was pretty healthy had a heart attack so there was no way I could take up all the slack and still my sister's husband was haranging her about "their Life". My vacation ran out and they said they couldn't hold my job open after 30 years of service I had to retire at 59, my husband didn,t say a thing although it would signifcantly affect our income and he would have to work more. My brother died two weeks later with his sister's holding his hands. One month later I was diagnose with rectal cancer had surgery and ended up with permanent colostomy and now on chemo my husband has been just wonderful though all this and even said he would have thought less of me if I hadn't done what I did and was my rock through it all. My sister husband was nothing but a selfish self absorb jerk and if any thing happens to him I will be the first to remind him how callous he was. So I know from both sides how hard this journey is for care takers and as a patient my brother was 5 years younger than me and was my best friend along with my sister. A week afer the anniversary of his death we were lookinf for a insurance check at my father's and I found two cards one for me and one for my sister from our brother thanking us for all we had done and how he never knew how much we loved him, it was so wierd that we hadn't seen them before and we just broke down and cried,it just isn't fair anyone should have to die from cancer in this day and age we should already have found a cure.

    Winter
    Can't begin to express my sadness at your current situation and similar situations of some of our other members. Sure, it's a difficult time for all members involved in a nasty medical diagnosis of any type. It's a long and winding, tortuous journey. The patient certainly didn't ask for this lot in life, nor the caregiver, but it's a heck of a lot easier not to make the journey alone.
    Craig was "right on" when he mentioned that not many listen to those little words "sickness and health" in the marriage vows. I also remember something else I was taught at a very young age. It's called "The Golden Rule".
    To those caregivers who are able to last through thick and thin with your loved one, I applaud you. To those who have some difficulty with this task, please remember "The Golden Rule".

    Luv,

    Wolfen
  • Nana b
    Nana b Member Posts: 3,030 Member
    wolfen said:

    Winter
    Can't begin to express my sadness at your current situation and similar situations of some of our other members. Sure, it's a difficult time for all members involved in a nasty medical diagnosis of any type. It's a long and winding, tortuous journey. The patient certainly didn't ask for this lot in life, nor the caregiver, but it's a heck of a lot easier not to make the journey alone.
    Craig was "right on" when he mentioned that not many listen to those little words "sickness and health" in the marriage vows. I also remember something else I was taught at a very young age. It's called "The Golden Rule".
    To those caregivers who are able to last through thick and thin with your loved one, I applaud you. To those who have some difficulty with this task, please remember "The Golden Rule".

    Luv,

    Wolfen

    Caregiver?
    Caregiver? I didn't read all these posts because i have to go to work now. But, I didn't have a care giver, I did it all myself, and worked and drove to work 2 hours commute to wrok and another 30 minutes to chemo. Sure, I may have gotten a cup of coffee or maybe a hand off the bed but that was it. My husband words were my comfort. My daughter still slept until noon, I played with our grand daughter and fed her. I slept in another room, becuase I didn't want to wake my husband, who had to work. I would get up at 3 am and paint the fireplace, the kitchen and then go to work! I must have had it easy!!! I guess.

    Lord, I hope that I don't need a caregiver should this ever come back again! I would hate to depend on my husband for dinner and my daughter for clean clothes, Hmmmmmmmmm. They don't do it for themselves!


    Off to work. Kick some **** girlfriend. Don't accept the alcohol, get him help. It's what he needs. Really, it's what he wants! He can't take care of himself.
  • buckeye2
    buckeye2 Member Posts: 428 Member
    It looks like you are the
    It looks like you are the caregiver not the patient in this case so you need to do what is within your power to get him better. Have you tried Alanon?

    Lisa
  • eightpawz
    eightpawz Member Posts: 28
    Stand Up Guy
    I was VERY lucky. I had just started dating someone 2 months before my diagnosis. When diagnosed I told him he didn't sign up for this, and that I wouldn't think badly of him if he didn't stick around. His reply was perfect "I didn't see your name on a sign up sheet either." He stayed, and is still here. Sometimes I don't know why, because I'm not often the funnest company. He loves me and my daughter. We are VERY lucky girls.

    -Dawn
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Nana b said:

    Caregiver?
    Caregiver? I didn't read all these posts because i have to go to work now. But, I didn't have a care giver, I did it all myself, and worked and drove to work 2 hours commute to wrok and another 30 minutes to chemo. Sure, I may have gotten a cup of coffee or maybe a hand off the bed but that was it. My husband words were my comfort. My daughter still slept until noon, I played with our grand daughter and fed her. I slept in another room, becuase I didn't want to wake my husband, who had to work. I would get up at 3 am and paint the fireplace, the kitchen and then go to work! I must have had it easy!!! I guess.

    Lord, I hope that I don't need a caregiver should this ever come back again! I would hate to depend on my husband for dinner and my daughter for clean clothes, Hmmmmmmmmm. They don't do it for themselves!


    Off to work. Kick some **** girlfriend. Don't accept the alcohol, get him help. It's what he needs. Really, it's what he wants! He can't take care of himself.

    Didn't mean
    To sound like I was whining, I too take care of my grandson, I take him to daycare, pick him up, watch him until his parents get home, watch him while their in school. Wash and dry the laundry, cook for all, do the dishes, mow the lawn, just tore out a kitchen wall, cupboards and floor, and letting contractors do the rest, go to college full time, take care of alcoholic husband, I think I was just crying not whining, crying for the loss of my man, hopelessly wishing for him back, remembering his strong long strideful walk, his laugh, his sincere I love you's, his hand upon my the side of my stomach, making me feel warm and secure, just was remembering all these things, and feeling soulfully sad. You can not help those that refuse. Tomorrow we go back to the doctor, after the first visit where he was informed he would die if he kept it up, I arrived home before him, I asked him what took him so long (we were at the appointment together in separate cars)he had stopped to buy another bottle of vodka. You can beg, you can plead, you can cry you heart out, nothing does any good until he chooses to change. He refuses the help.
    At this point he is nothing but skin and bones, he looks like a refugee from Sudan, he's weak, he shuffles in his walk, he is but a shell of the man he was. Get him help? How? He cannot be forced into rehab, or else he would have been there long ago.
    And your last sentence "He can't take care of himself", no, he can't, and that is the saddest part of it all.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Sundanceh said:

    Winter:)
    Here's a story that I never told you yet - until today. I felt the need to write you after reading your last entry about your other half and what's going on there.

    First, I'm sorry that it's like that. I have no idea of how that must affect you on a daily basis, weekends and holidays included. I'm sure at the root of all your feelings, I'm thinking that you do not feel valued from your husband's reactions to your cancer.

    What I see from the sidelines over here, is that your husband really "doesn't get it." It shows me that he has no understanding of what you've been through and the huge significance in the victory that you achieved.

    "From worst to 1st" is one he11 of a turnaround in my personal opinion. The things you had done to get you to a watch and wait state were truly remarkable. It's a pity that your other 1/2 was seeing it through foggy goggles. I can tell you he really missed out. And that's his loss.

    The other thing, is that at the moment and hopefully for the forseeable future, you are now 'clear' and not having to undergo surgeries or harsh treatments. You are putting your life back on track and taking charge of yourself. You are growing as a person, while your hubby is dying as a person.

    Cancer is a disease, but so is alcoholism. It appears that he is on that bandwagon now, with no intent of hopping off...I'm sorry.

    Now, what I wanted to tell you was this. All of those months when I was home sick out of my mind and hoping for death, I would think of you on some of those days around 4p my time and 2p for you.

    With the few brain cells, I had remaining, I would be thinking well Winter's husband is home now about 2pm and he's probably got the bottle in his hand going at it - it's going to be another long night.

    And I thought about it more than once - more than once or even twice. When I would go to bed, I could still see your husband pouring one more. I could see this abstract vision in my head. I heard you talking about this one day about how he would come home and start up ,night after night.

    This reel played over and over again, and it just made me sad. Maybe, he started out to numb his feelings about your impending doom - and after you made it, maybe it was too late for him, or maybe he just didn't want to change his ways. Or maybe he is sick with his disease, that he no longer cannot on his own.

    I'm not the inspiration around my household either, but my spouse is not trying to kill herself. Seeing you triumph and win a major battle while your hubby gives his life away is truly heartbreaking.

    We only get one life - and I guess it's up to each one of us to make the hard decisions on how we are going to do that.

    I would love something more for you. It's just got to be hard on you mentally and apparently physically now, with the things you have to do for him.

    Some people are fighters and others are less than that...you know what you are:)

    This is a trying time and I can't just bull$hit this one away....but you already know that.

    Be good to yourself, because it seems you will be the only one who can be.

    -Craig

    Craig
    Thank you my friend for being there.
    Winter Marie
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    wolfen said:

    Winter
    Can't begin to express my sadness at your current situation and similar situations of some of our other members. Sure, it's a difficult time for all members involved in a nasty medical diagnosis of any type. It's a long and winding, tortuous journey. The patient certainly didn't ask for this lot in life, nor the caregiver, but it's a heck of a lot easier not to make the journey alone.
    Craig was "right on" when he mentioned that not many listen to those little words "sickness and health" in the marriage vows. I also remember something else I was taught at a very young age. It's called "The Golden Rule".
    To those caregivers who are able to last through thick and thin with your loved one, I applaud you. To those who have some difficulty with this task, please remember "The Golden Rule".

    Luv,

    Wolfen

    Dear Wolfen
    I think the saddest part is what they do to themselves. Yesterday I left at 9:00 for school, I got home at 2:30 and he was long gone into the bottle, he went to bed, got up at 4:00 came outside where I was with his sweat pants soak and wet, I asked him what happened, he matter of factly said, I peed my pants (this happens often), he had fallen asleep and peed his pants while in bed (this also happen often)I made him change his sweat pants and an hour later his new sweat pants were wet from him peeing in them. That was yesterday, today he didn't pee his pants but fell down two times, I could not try as I might get him back up (due to drinking he has no muscle mass left and can't help get him up), both times I had to get my son to pick him up (this also happens several times on a weekly basis).
    Tomorrow he goes back to the doctor to get his blood test results, they sent a copy, all show liver damage and almost diabetic, he has listened to me about it, maybe he'll listen to the doctor this time, but I doubt it.
    Winter Marie
  • Nana b
    Nana b Member Posts: 3,030 Member

    Didn't mean
    To sound like I was whining, I too take care of my grandson, I take him to daycare, pick him up, watch him until his parents get home, watch him while their in school. Wash and dry the laundry, cook for all, do the dishes, mow the lawn, just tore out a kitchen wall, cupboards and floor, and letting contractors do the rest, go to college full time, take care of alcoholic husband, I think I was just crying not whining, crying for the loss of my man, hopelessly wishing for him back, remembering his strong long strideful walk, his laugh, his sincere I love you's, his hand upon my the side of my stomach, making me feel warm and secure, just was remembering all these things, and feeling soulfully sad. You can not help those that refuse. Tomorrow we go back to the doctor, after the first visit where he was informed he would die if he kept it up, I arrived home before him, I asked him what took him so long (we were at the appointment together in separate cars)he had stopped to buy another bottle of vodka. You can beg, you can plead, you can cry you heart out, nothing does any good until he chooses to change. He refuses the help.
    At this point he is nothing but skin and bones, he looks like a refugee from Sudan, he's weak, he shuffles in his walk, he is but a shell of the man he was. Get him help? How? He cannot be forced into rehab, or else he would have been there long ago.
    And your last sentence "He can't take care of himself", no, he can't, and that is the saddest part of it all.

    I hope you get him
    I hope you get him back....

    I lost someone who was an alcoholic and it was sad that no one forced her to a rehab center. It can be done. Helps if you have insurance.

    God Bless Winter Marie. It must be really tough. I wish you help and laughter, and a long strideful walk!
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Winter Marie
    Winter Marie,
    You are one amazing lady. I know Al-Anon is a life saver for many people who love someone who is an alcoholic. Here's the link http://www.al-anon.alateen.org/home

    Hugs to you.

    Aloha,
    Kathleen
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Al-Anon
    Al-Anon might be a very good resource for you.

    You are so right that you can't get help for someone that doesn't want it. My biological father is an alcolholic and so is my ex. My ex has anger management problems and was sent to treatment multiple times. It did no good, because he didn't believe he had a problem and didn't want help.

    You can only control what YOU do about this. Do you put up with it? Ignore it? Do you find some support for yourself to help you make decisions going forward? Tough love?

    I couldn't stay with my alcoholic angry ex. I'm so glad I did not. I cannot imagine going through my cervical cancer, and now colon cancer married to him. I am so blessed that my husband (of 8 years) has been with me through these rough times, and is so supportive.

    We all have choices to make. Sometimes a wake-up call is needed for those that have headed down the wrong path. Maybe at Al-Anon they can give you some ideas to try and get some help for your husband. If he still refuses, then you have to decide to live with it, or get out. Sad, hard words to hear, but that is what it boils down to. I'm so sorry you have to live with this right now.
  • herdizziness
    herdizziness Member Posts: 3,624 Member

    Al-Anon
    Al-Anon might be a very good resource for you.

    You are so right that you can't get help for someone that doesn't want it. My biological father is an alcolholic and so is my ex. My ex has anger management problems and was sent to treatment multiple times. It did no good, because he didn't believe he had a problem and didn't want help.

    You can only control what YOU do about this. Do you put up with it? Ignore it? Do you find some support for yourself to help you make decisions going forward? Tough love?

    I couldn't stay with my alcoholic angry ex. I'm so glad I did not. I cannot imagine going through my cervical cancer, and now colon cancer married to him. I am so blessed that my husband (of 8 years) has been with me through these rough times, and is so supportive.

    We all have choices to make. Sometimes a wake-up call is needed for those that have headed down the wrong path. Maybe at Al-Anon they can give you some ideas to try and get some help for your husband. If he still refuses, then you have to decide to live with it, or get out. Sad, hard words to hear, but that is what it boils down to. I'm so sorry you have to live with this right now.

    Yesterday follow up appointment
    We went to the Doctor's yesterday for his follow up appointment after his blood test, his doctor was very kind but firmly told hubby he needs AA and should be in a treatment situation but he had to stop drinking his liver is damaged, his red blood cells are enlarged and angry, and should he continue on his way he has months to a year to live.
    We got in our truck and I asked my hubby if he was going to AA, he answered NO, I asked if he would consider a treatment facility, again NO, I asked him if he would go to a relatives house that do not drink, are in the middle of nowhere with no transportation available to him and try to quit there, this he agreed to. The doctor offered Valium to help him avoid the DT's, so we shall see if DEATH is a big enough deterrent for him.
    Thank you all for your advice and help, I shall keep you tuned in to how he does.
    Winter Marie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Love y'all!
    I've had to wait to see what I could post on this. It just hurt so much to read what some of y'all have had to go through, and I know that once again God smiled on me. My husband is very good to me, and I am so grateful for that. It is true that we have been through trials together: his sudden cardiac arrest, strokes and cancer for our parents, my cancer, and then both of his parents dying within a couple of years, each in a horrid way. The constant has been our love for each other and the determination to look past the tough parts to focus on the good.

    I am well aware that I couldn't do that alone. It's hard enough when I have a loving partner in the journey. So, my prayers and love go to those who don't have the same blessing. I love all of y'all and pray life will bring better days.

    *hugs*
    Gail