Does anyone need to talk and just vent? I am here.

nevergiveup7
nevergiveup7 Member Posts: 2
edited March 2014 in Caregivers #1
Hello--
If anyone needs to talk, vent, anything I am here.
Trust me.
I have been through this as a caregiver and I know it can tear you apart.
But I am here.
Lets share our stories.
«13

Comments

  • blk1978
    blk1978 Member Posts: 2
    I'll vent
    I need to vent after everything that has just happened. I am 31 and have been taking care of my mom since my dad died 15 years ago. 8 years ago my mom was diagnosed with colon cancer. Being the youngest of 4 and the only one living at home, it was natural that I would take care of her. I received help from one of my siblings. My 2 older sisters just took advantage of me being there....until yesterday. One of them visited Mom and made sweeping changes that I have been trying to make for the past year. She convinced Mom to sell the house (the very house that we all grew up in and she spent her life with my dad) and allow other people to visit her until we move her so I don't have to drive 30 minutes every day to see her. As I was enjoying my coffee this morning with my fiance (I am trying to plan a wedding in the middle of all of this - after putting my life on hold for so long to take care of Mom) I got a phone call that said (and I quote) "I'm hungry. Can you come over to make me soup? No one's here to watch me like you said would happen." First off, I never said that would happen. My sister did. I was told by her to stay home and enjoy my Sunday. She hopped on a plane back to Florida after doing her damage and leaving the mess for me to clean up AGAIN. She is the saint and I'm the horrible daughter who can't do anything right. Just ask my mom. She'll be the first one to tell you that I can't do anything right.
    Signed,
    The Bad Daughter
  • geotina
    geotina Member Posts: 2,111 Member
    blk1978 said:

    I'll vent
    I need to vent after everything that has just happened. I am 31 and have been taking care of my mom since my dad died 15 years ago. 8 years ago my mom was diagnosed with colon cancer. Being the youngest of 4 and the only one living at home, it was natural that I would take care of her. I received help from one of my siblings. My 2 older sisters just took advantage of me being there....until yesterday. One of them visited Mom and made sweeping changes that I have been trying to make for the past year. She convinced Mom to sell the house (the very house that we all grew up in and she spent her life with my dad) and allow other people to visit her until we move her so I don't have to drive 30 minutes every day to see her. As I was enjoying my coffee this morning with my fiance (I am trying to plan a wedding in the middle of all of this - after putting my life on hold for so long to take care of Mom) I got a phone call that said (and I quote) "I'm hungry. Can you come over to make me soup? No one's here to watch me like you said would happen." First off, I never said that would happen. My sister did. I was told by her to stay home and enjoy my Sunday. She hopped on a plane back to Florida after doing her damage and leaving the mess for me to clean up AGAIN. She is the saint and I'm the horrible daughter who can't do anything right. Just ask my mom. She'll be the first one to tell you that I can't do anything right.
    Signed,
    The Bad Daughter

    Bad Daughter
    Time to call the saint and all the others and have a conference call or meeting. Tell them it is their turn and they need to pitch in whether they like it or not. They just cannot show up, stir things up and leave town while you pick up the pieces. You are getting married. If mom is unable to take care of herself, then all of you need to make arrangements that everyone can agree on and share in. If mom sells her home, where is she going to live? Are they expecting mom to live with you?. Is your mom able to live on her own? Can mom be independent but choses not to. You are the good daughter. Suggest maybe mom could move to Florida and I bet the attitude will change very quickly. Good luck. That being said if your mom needs you then you should be there for her, with conditions and those conditions need to be worked out. Again, don't let them put it all on your shoulders, you need their shoulders.
  • B 1
    B 1 Member Posts: 19
    blk1978 said:

    I'll vent
    I need to vent after everything that has just happened. I am 31 and have been taking care of my mom since my dad died 15 years ago. 8 years ago my mom was diagnosed with colon cancer. Being the youngest of 4 and the only one living at home, it was natural that I would take care of her. I received help from one of my siblings. My 2 older sisters just took advantage of me being there....until yesterday. One of them visited Mom and made sweeping changes that I have been trying to make for the past year. She convinced Mom to sell the house (the very house that we all grew up in and she spent her life with my dad) and allow other people to visit her until we move her so I don't have to drive 30 minutes every day to see her. As I was enjoying my coffee this morning with my fiance (I am trying to plan a wedding in the middle of all of this - after putting my life on hold for so long to take care of Mom) I got a phone call that said (and I quote) "I'm hungry. Can you come over to make me soup? No one's here to watch me like you said would happen." First off, I never said that would happen. My sister did. I was told by her to stay home and enjoy my Sunday. She hopped on a plane back to Florida after doing her damage and leaving the mess for me to clean up AGAIN. She is the saint and I'm the horrible daughter who can't do anything right. Just ask my mom. She'll be the first one to tell you that I can't do anything right.
    Signed,
    The Bad Daughter

    Hey Bad Daughter -- I am the B Daughter
    I am a couple (OK Well about 20 years older than you). My dad died 3.5 years ago. I am the oldest and only daughter that's why B1. I have three younger brothers, one helps the other two we have not talked to nor do we know where they are in over 7 years for one and 3 years for the other. My younger brother will do exactly as told, but does not have the time to help on a regular basis. My mom was living 70 miles away (about 1.5 hours one way) and I was traveling three or four times per week and still trying to work full time.

    Stage 4 Breast Cancer with a Modified Radical Mastectomy. In two months she has had 4 surgeries. The Mastectomy, emergency surgery for internal bleeding two days later. Port went in, port got infected, port came out. One chemo treatment and we are not going to do any more chemo. Also waiting to see if we do rads. Side effects have been awful for her.

    About 5 weeks ago she had stopped taking her meds, cause some doctor called to tell her not to take X meds and she heard "Do not take any meds" I moved her to a transition care unit, 5 minutes from my house. What a Godsend. Sometimes you just have to say Enough. You are the one taking care of her. Get a General Power of Attorney, Medical POA, and Living Will. Turn the Bad into the Witch "Change letter to B" Daughter. You will be insane, I was.
    Do what you have to do to keep your life. Ask your mom and then just do it any way.
    Love Always
    Linda - Norwalk, OH
    Live today because tomorrow is not promised..
  • B 1 said:

    Hey Bad Daughter -- I am the B Daughter
    I am a couple (OK Well about 20 years older than you). My dad died 3.5 years ago. I am the oldest and only daughter that's why B1. I have three younger brothers, one helps the other two we have not talked to nor do we know where they are in over 7 years for one and 3 years for the other. My younger brother will do exactly as told, but does not have the time to help on a regular basis. My mom was living 70 miles away (about 1.5 hours one way) and I was traveling three or four times per week and still trying to work full time.

    Stage 4 Breast Cancer with a Modified Radical Mastectomy. In two months she has had 4 surgeries. The Mastectomy, emergency surgery for internal bleeding two days later. Port went in, port got infected, port came out. One chemo treatment and we are not going to do any more chemo. Also waiting to see if we do rads. Side effects have been awful for her.

    About 5 weeks ago she had stopped taking her meds, cause some doctor called to tell her not to take X meds and she heard "Do not take any meds" I moved her to a transition care unit, 5 minutes from my house. What a Godsend. Sometimes you just have to say Enough. You are the one taking care of her. Get a General Power of Attorney, Medical POA, and Living Will. Turn the Bad into the Witch "Change letter to B" Daughter. You will be insane, I was.
    Do what you have to do to keep your life. Ask your mom and then just do it any way.
    Love Always
    Linda - Norwalk, OH
    Live today because tomorrow is not promised..

    This comment has been removed by the Moderator
  • StarLitSkyyz
    StarLitSkyyz Member Posts: 1
    Vent for the ones venting to me..
    I guess i need to vent FOR my parents. They are caregivers to a family member and have been for the past 7/8 years. They vent to me. They are going through financial turmoil. They house my aunt who was first diagnosed with Breast Cancer stage IV. I honestly dont understand how all the cancer/chemo/treatments work or if she is in remission, i do know that the cancer has spread to other parts of her body and recently they have found a "different" kind of BC in her other breast. The entire time she has lived with my parents she has been mean, cold, unkind, ungrateful, etc. She gets disability and/or SSI. She spends all this money paying off credit card bills. And then she continues to apply for new credit cards and i dont know how, but she gets them. She then uses these credit cards to buy anything and everything. Every time my mom turns around UPS, FedEx or USPS is at the door with a big brown box addressed to my aunt. They have turned their dining room into a bedroom for my aunt who can barely walk. So that she has full access to the downstairs.. kitchen, living room, back yard, front yard. They built a handicapped bathroom in the two car garage, because at one point she was wheel chair bound. My dad has drawn all that he can draw from his 401K to help with my aunt and finances. My mother can't get or keep a job because she takes my aunt to her appointments. My aunt refuses to schedule appointments at the same time or same days. There is one taxi service that is paid for by disability or whoever. But it only applies to one treatment she gets. My mom has to take her to the various other treatments. The three of them are depending on only one Income.. my dads. They have talked about possibly filing for bankruptcy this new year.. and might even have the house forclosed on them. They have lived in this house for 20+ years.. and as it stands the house is falling apart around them. My dad has tried to keep up with the repairs.. as the years go by he is getting older and suffering from his own illnesses such has high blood pressure. Achy joints... etc... There is no where else for my aunt to go as far as family is concerned because they all live out of state. One uncle cant afford to take care of her as he has a special needs child. One Aunt could possibly afford it, but my aunt who has cancer refuses to relocate. The only other option would be for her to move into a hospice type home. Though she can still manage to take care of herself.. She refuses to pay my mom rent or give money for gas. She refuses to stop spending on her credit cards. I guess my mom is at a point now where if she wants help from my aunt financially, she will have to take her to court. Emotionally my mother is just not ready. I worry so much about my parents and my aunt. I, looking through the window, see two people who have never lived their life together not having to take care of someone, spiraling downwards, and my aunt who treats them as if they aren't doing enough. I have suggested to my mom to go to these groups with other caregivers and talk about this stuff to get it off her chest to see what others go through. But she refuses. I think she feels like she is betraying her sister by talking about their issues to strangers.

    Thank you for "listening".
  • nevergiveup7
    nevergiveup7 Member Posts: 2
    blk1978 said:

    I'll vent
    I need to vent after everything that has just happened. I am 31 and have been taking care of my mom since my dad died 15 years ago. 8 years ago my mom was diagnosed with colon cancer. Being the youngest of 4 and the only one living at home, it was natural that I would take care of her. I received help from one of my siblings. My 2 older sisters just took advantage of me being there....until yesterday. One of them visited Mom and made sweeping changes that I have been trying to make for the past year. She convinced Mom to sell the house (the very house that we all grew up in and she spent her life with my dad) and allow other people to visit her until we move her so I don't have to drive 30 minutes every day to see her. As I was enjoying my coffee this morning with my fiance (I am trying to plan a wedding in the middle of all of this - after putting my life on hold for so long to take care of Mom) I got a phone call that said (and I quote) "I'm hungry. Can you come over to make me soup? No one's here to watch me like you said would happen." First off, I never said that would happen. My sister did. I was told by her to stay home and enjoy my Sunday. She hopped on a plane back to Florida after doing her damage and leaving the mess for me to clean up AGAIN. She is the saint and I'm the horrible daughter who can't do anything right. Just ask my mom. She'll be the first one to tell you that I can't do anything right.
    Signed,
    The Bad Daughter

    "The Bad Daughter"
    Hello- Sounds like you are under a great deal of stress- Which is normal for those of us who have cared for a parent. It is very sad that you being the youngest seem to be left with all the work. You would think the oldest would actually step in and be a little more responsible-(but with communication to you) In my opinion- you are doing everything you can, regardless of how hard it may be or stressful, but at least you know deep in your heart that you are a good person and caregiver, for doing what you are doing for your Mother, especially while trying to plan this wedding.. Sometimes I have felt the same way as you in a sense. I am an only child and sometimes I feel like all I do and have done for my Mom is not enough or good enough. But put ourself in their situations, I am sure they are very greatful, thought some times it may be hard for them to show it. Just keep doing what you are doing! Give yourself credit. You are not a "Bad Daughter" you are actually very amazing!!! Your Mom knows this. Where would she be without YOU?
  • NBTXGIRL
    NBTXGIRL Member Posts: 31
    blk1978 said:

    I'll vent
    I need to vent after everything that has just happened. I am 31 and have been taking care of my mom since my dad died 15 years ago. 8 years ago my mom was diagnosed with colon cancer. Being the youngest of 4 and the only one living at home, it was natural that I would take care of her. I received help from one of my siblings. My 2 older sisters just took advantage of me being there....until yesterday. One of them visited Mom and made sweeping changes that I have been trying to make for the past year. She convinced Mom to sell the house (the very house that we all grew up in and she spent her life with my dad) and allow other people to visit her until we move her so I don't have to drive 30 minutes every day to see her. As I was enjoying my coffee this morning with my fiance (I am trying to plan a wedding in the middle of all of this - after putting my life on hold for so long to take care of Mom) I got a phone call that said (and I quote) "I'm hungry. Can you come over to make me soup? No one's here to watch me like you said would happen." First off, I never said that would happen. My sister did. I was told by her to stay home and enjoy my Sunday. She hopped on a plane back to Florida after doing her damage and leaving the mess for me to clean up AGAIN. She is the saint and I'm the horrible daughter who can't do anything right. Just ask my mom. She'll be the first one to tell you that I can't do anything right.
    Signed,
    The Bad Daughter

    Bad Sister venting....
    If you are the bad daughter, then I am the bad sister. I am the youngest daughter in my family. I have an older sister and brother that live a couple of hours away. My sister has always tried to come down regularly. My brother would grace us with his presence once maybe twice a year. A little back ground history. My mother had colon cancer and congestive heart failure. She made us all promise her that we would never put her on life support. She collapsed one day from what we believe to be a cardiac arrest, but since she did not have a Do Not Resuscitate Order, the hospital had to run a bunch test to find that there was no brain activity. These test lasted three days. After that, my father made the decision to disconnect life support, unfortunately, she did not pass immediately. My brother fell to pieces. We sat by her bedside for two more days waiting and watching her suffer.

    My father was diagnosed with Stage IV colon cancer in June. He immediately wanted to get his affairs in order, including Power of Attorney, Living Will, Medical Power of Attorney, and especially a Do Not Resuscitate (DNR). He asked all of us to be there. My brother told my sister and I, he didn’t want any part of it and made every excuse not to be here when it was being discussed. After everything was said and done, I sat down with my brother to explain what Daddy had decided. He flipped when he found out that Dad signed a DNR and that he made me (the only one living here), the executor of his will and gave me power of attorney with my sister being the alternate. He had the audacity to ask me that if something happened to Daddy, to not give them the DNR so he could get here and say good bye, but if Dad held on like Mom, he couldn’t handle that and would have to leave. So let me get this straight: I am supposed to go against my father’s wishes, so he can say goodbye when he dies, even though he doesn’t come see him when he is a live, but then if he doesn’t die immediately, I have to sit by and watch Daddy suffer while he goes home. ARE YOU FREAKING KIDDING ME! I told him every time you talk to him, you had better act as though it is the last time you will talk to him.

    The agreement we all had when Dad was dx, was Dad would live with me because I had the room, I lived here, and I was close to his Drs. I am a single mother and travel for work, so I told my business partner, that I would no longer travel and would be home every night for Dad. I pay someone to stay with him when I am not there. I take him every Friday for Chemo and Labs and every day to Radiation (an hour away in the middle of the day). My sister comes every other week Wednesday and Thursday to take him to Chemo and Radiation on those days. My brother was to come every other weekend to give me a break. My brother has been here three times since June, he is afraid to give meds, he can’t deal with vomiting, showers or ostomy and he doesn’t know what to cook and evidently how to work a washing machine. So he comes down, sleeps the whole time he is here and is just another person for me to feed and clean up after. He provides no emotional or financial support.

    I am the maid, the cook, the taxi, the CPA, the nurse, the aide, I live in hospitals and doctors offices but evidently I don’t do enough for my brother. What a BAD SISTER I AM! Kim
  • mysarial
    mysarial Member Posts: 14

    Vent for the ones venting to me..
    I guess i need to vent FOR my parents. They are caregivers to a family member and have been for the past 7/8 years. They vent to me. They are going through financial turmoil. They house my aunt who was first diagnosed with Breast Cancer stage IV. I honestly dont understand how all the cancer/chemo/treatments work or if she is in remission, i do know that the cancer has spread to other parts of her body and recently they have found a "different" kind of BC in her other breast. The entire time she has lived with my parents she has been mean, cold, unkind, ungrateful, etc. She gets disability and/or SSI. She spends all this money paying off credit card bills. And then she continues to apply for new credit cards and i dont know how, but she gets them. She then uses these credit cards to buy anything and everything. Every time my mom turns around UPS, FedEx or USPS is at the door with a big brown box addressed to my aunt. They have turned their dining room into a bedroom for my aunt who can barely walk. So that she has full access to the downstairs.. kitchen, living room, back yard, front yard. They built a handicapped bathroom in the two car garage, because at one point she was wheel chair bound. My dad has drawn all that he can draw from his 401K to help with my aunt and finances. My mother can't get or keep a job because she takes my aunt to her appointments. My aunt refuses to schedule appointments at the same time or same days. There is one taxi service that is paid for by disability or whoever. But it only applies to one treatment she gets. My mom has to take her to the various other treatments. The three of them are depending on only one Income.. my dads. They have talked about possibly filing for bankruptcy this new year.. and might even have the house forclosed on them. They have lived in this house for 20+ years.. and as it stands the house is falling apart around them. My dad has tried to keep up with the repairs.. as the years go by he is getting older and suffering from his own illnesses such has high blood pressure. Achy joints... etc... There is no where else for my aunt to go as far as family is concerned because they all live out of state. One uncle cant afford to take care of her as he has a special needs child. One Aunt could possibly afford it, but my aunt who has cancer refuses to relocate. The only other option would be for her to move into a hospice type home. Though she can still manage to take care of herself.. She refuses to pay my mom rent or give money for gas. She refuses to stop spending on her credit cards. I guess my mom is at a point now where if she wants help from my aunt financially, she will have to take her to court. Emotionally my mother is just not ready. I worry so much about my parents and my aunt. I, looking through the window, see two people who have never lived their life together not having to take care of someone, spiraling downwards, and my aunt who treats them as if they aren't doing enough. I have suggested to my mom to go to these groups with other caregivers and talk about this stuff to get it off her chest to see what others go through. But she refuses. I think she feels like she is betraying her sister by talking about their issues to strangers.

    Thank you for "listening".

    Absent "friends"
    I touched on this briefly in another post, but I seriously need to vent. My husband and I are "young" for a serious illness like this (35, and he has Mesothelioma), and consequently, so are our "friends". I completely understand that this is a shock and they may not have any idea how to handle it. I sure as hell have no idea how to handle it. However, I would HAVE to think that common sense dictates that you don't avoid us like the plague.

    It's been a month and a half since he was diagnosed. They are aware this is very likely going to kill him at some point, and that point could be very soon. I can count on two fingers the number of people who have spoken to us more than twice since we broke the news. So out of our circle of about 15 "friends", less than 2% of them contact us or reply when I reach out for something. We're not asking them to come over and clean the house or cook meals either, just occasionally get dinner or see a movie.

    Not only does it tear me up to see my husband so alone, but it's not exactly comforting to me either, having no support from people I thought were close to us. I vented a little bit on Facebook, and got nothing but negative responses. Like people were upset with me for being upset that they suck. Instead of offering support that we so clearly are asking for, they just went on the defensive.

    I am trying to be understanding, but my limit has been reached. Do I just write these people off? I know my husband wouldn't, he is so forgiving of everything. I just can't take the stress and dissappointment anymore, I feel like it's too much of a burden to add to everything else I have to go through.
  • quig801
    quig801 Member Posts: 1
    Just some basic help.
    Hi, I'm 56 years old and am currently taking care of my wife of 34 years who now has stage IV rectal cancer. She was diagnosed in late Aug and went through 38 days of 24/7 chemo with 28 radiation courses. We found out that her cancer has metastasized into her lymphatic system and into her liver. It is a small cell really aggressive type cancer so our Oncologist has giver her two to three months to live without any further treatment and one to two years if she starts more chemo. She has decided not the go with the chemo treatments so now we just kinda deal with her situation day by day. Right now she feels alright and is starting to get her appetite back but she still is losing weight. I am past the denial stage but I still have trouble of being too honest with my wife when we discuss things concerning the future. I try to be hopeful and upbeat with her which I can do most of the time but sometimes the dark side of things will creep into our conversations (like her life expectancy) and I am afraid of hurting her feelings. I am completely out of my league here so any advice or thoughts would be helpful. Thanks
  • geotina
    geotina Member Posts: 2,111 Member

    Vent for the ones venting to me..
    I guess i need to vent FOR my parents. They are caregivers to a family member and have been for the past 7/8 years. They vent to me. They are going through financial turmoil. They house my aunt who was first diagnosed with Breast Cancer stage IV. I honestly dont understand how all the cancer/chemo/treatments work or if she is in remission, i do know that the cancer has spread to other parts of her body and recently they have found a "different" kind of BC in her other breast. The entire time she has lived with my parents she has been mean, cold, unkind, ungrateful, etc. She gets disability and/or SSI. She spends all this money paying off credit card bills. And then she continues to apply for new credit cards and i dont know how, but she gets them. She then uses these credit cards to buy anything and everything. Every time my mom turns around UPS, FedEx or USPS is at the door with a big brown box addressed to my aunt. They have turned their dining room into a bedroom for my aunt who can barely walk. So that she has full access to the downstairs.. kitchen, living room, back yard, front yard. They built a handicapped bathroom in the two car garage, because at one point she was wheel chair bound. My dad has drawn all that he can draw from his 401K to help with my aunt and finances. My mother can't get or keep a job because she takes my aunt to her appointments. My aunt refuses to schedule appointments at the same time or same days. There is one taxi service that is paid for by disability or whoever. But it only applies to one treatment she gets. My mom has to take her to the various other treatments. The three of them are depending on only one Income.. my dads. They have talked about possibly filing for bankruptcy this new year.. and might even have the house forclosed on them. They have lived in this house for 20+ years.. and as it stands the house is falling apart around them. My dad has tried to keep up with the repairs.. as the years go by he is getting older and suffering from his own illnesses such has high blood pressure. Achy joints... etc... There is no where else for my aunt to go as far as family is concerned because they all live out of state. One uncle cant afford to take care of her as he has a special needs child. One Aunt could possibly afford it, but my aunt who has cancer refuses to relocate. The only other option would be for her to move into a hospice type home. Though she can still manage to take care of herself.. She refuses to pay my mom rent or give money for gas. She refuses to stop spending on her credit cards. I guess my mom is at a point now where if she wants help from my aunt financially, she will have to take her to court. Emotionally my mother is just not ready. I worry so much about my parents and my aunt. I, looking through the window, see two people who have never lived their life together not having to take care of someone, spiraling downwards, and my aunt who treats them as if they aren't doing enough. I have suggested to my mom to go to these groups with other caregivers and talk about this stuff to get it off her chest to see what others go through. But she refuses. I think she feels like she is betraying her sister by talking about their issues to strangers.

    Thank you for "listening".

    Aunt
    Don't mean to be cruel but since your aunt is ungrateful and refuses to contribute (which from your post she is able to do) it is time for her to move to assisted living and give your parents some much needed rest and regroup time. If you aunt did not have the resources and let them know she appreciates all they do then that is an entirely different story. As it stands, assisted living is the answer. Call a social worker and the will help with arrangements. Tina
  • CherylMike
    CherylMike Member Posts: 118
    quig801 said:

    Just some basic help.
    Hi, I'm 56 years old and am currently taking care of my wife of 34 years who now has stage IV rectal cancer. She was diagnosed in late Aug and went through 38 days of 24/7 chemo with 28 radiation courses. We found out that her cancer has metastasized into her lymphatic system and into her liver. It is a small cell really aggressive type cancer so our Oncologist has giver her two to three months to live without any further treatment and one to two years if she starts more chemo. She has decided not the go with the chemo treatments so now we just kinda deal with her situation day by day. Right now she feels alright and is starting to get her appetite back but she still is losing weight. I am past the denial stage but I still have trouble of being too honest with my wife when we discuss things concerning the future. I try to be hopeful and upbeat with her which I can do most of the time but sometimes the dark side of things will creep into our conversations (like her life expectancy) and I am afraid of hurting her feelings. I am completely out of my league here so any advice or thoughts would be helpful. Thanks

    Just some thoughts
    Hello~ My husband and I were married almost 25 years. He was diagnosed with head and neck cancer that had mets to his lymph nodes in Sept. 07. He was orginally given 3 months to live. He passed away on halloween of this year. He fought his cancer until the very end. We knew that he was terminal throughout his disease. We too had discussions concerning all aspects of his life expectancy. At first it was very difficult to have these conversations, but in time it became less so. He actually took the lead on most of the discussions as he wanted to make sure that our children and myself knew how he loved us. (I had given him a journal to write down anything that he chose and told him I would not look at what he had written while he was with us). I am the one that had a hard time talking about these issues. In time, I understood that it was essential to him to have these talks so that he could have peace with these things. If I understood your post correctly, your wife choose not to continue treatment. I think the best thing that you can do for her, is to support her decision. She may be afraid to speak about certain issues as she might think that you will not be ok with it. I would just follow her lead and let her know that you are there for her no matter what. That you will listen to her no matter what it is that she needs - whether to talk, cry, vent . . . You are in my thoughts and prayers~Cheryl
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    quig801 said:

    Just some basic help.
    Hi, I'm 56 years old and am currently taking care of my wife of 34 years who now has stage IV rectal cancer. She was diagnosed in late Aug and went through 38 days of 24/7 chemo with 28 radiation courses. We found out that her cancer has metastasized into her lymphatic system and into her liver. It is a small cell really aggressive type cancer so our Oncologist has giver her two to three months to live without any further treatment and one to two years if she starts more chemo. She has decided not the go with the chemo treatments so now we just kinda deal with her situation day by day. Right now she feels alright and is starting to get her appetite back but she still is losing weight. I am past the denial stage but I still have trouble of being too honest with my wife when we discuss things concerning the future. I try to be hopeful and upbeat with her which I can do most of the time but sometimes the dark side of things will creep into our conversations (like her life expectancy) and I am afraid of hurting her feelings. I am completely out of my league here so any advice or thoughts would be helpful. Thanks

    Hard Conversations
    Yeah, those conversations are hard. My husband of 42 years died Oct. 20, 2009. He fought stage 4 colon cancer for six years. He chose to fight knowing that he was just buying time, and he bought more than we expected. I told him from the beginning that it was his body and his choice. I always felt guilty when we talked about end of life and after his death issues. I felt like I was thinking about me instead of him. When I told him that I felt that way, he told me that he wanted to talk about them. He felt like we needed to deal with those things because he wanted to know that I would be ok. His greatest concern about dying was me. Yet, those conversations were still hard. In fact, I just teared up writing this and remembering them. Caregiving for a terminally ill spouse is very hard in so many ways. I can honestly say though, that I was prepared for the business side of things. The emotional is a whole different thing. Take care, Fay
  • david54
    david54 Member Posts: 164 Member
    Vent
    I have been a caregiver for my wife who has stage 4 colon cancer for 2 years. There have been good days and very tough ones. This year was very difficult because I fractured my ankle in May and had hardware inserted to stabilize it. After a long rehab life seemed to be “Stable” again, meaning back to a routine.
    Four weeks ago I noticed the old incision scar was more red and swollen and forming little pus pockets! It was infected so I had to go back under the knife to have the hardware removed. (Thanksgiving Day!)
    I went back to my job last week and guess what? I did not get paid yesterday! Some mix-up with Medical Leave and my companies’ payroll (Which is located across the country from where I work!) No pay! And to make me really spin with this is that the company we contract with takes the last half of December off so I am really concerned that this might happen again!
    "Come on God! I can't support my spouse without an income!" I sat in my car after work after spending all day trying to reach payroll and being told I was “twenty people behind in the queue and would be disconnected” I just stared at the steering wheel wanting to split, anywhere, just get the hell out of Dodge.
    I needed to vent, thank you for allowing me to do so.

    David
  • paulmylife
    paulmylife Member Posts: 1
    husband dying
    Hello, I saw your post and decided to send a note. The day after Christmas and can't quit crying. Paul has had colon, liver, lung, brain cancer for 3 years.

    I thought I was coping pretty good but on Dec 16th they found another shadow in the brain. I am so scared. I think he is giving up....sleeps all the time. I feel like I have already lost him. I pray and pray but cannot stop crying. I feel as tho I am losing my mind. Nothing seems to help. I cannot bring myself out of the depression. I know there is nothing anyone can do. I thought if I said it to someone it would help but don't think that is the answer. Thanks for listening...
  • grandmafay
    grandmafay Member Posts: 1,633 Member

    husband dying
    Hello, I saw your post and decided to send a note. The day after Christmas and can't quit crying. Paul has had colon, liver, lung, brain cancer for 3 years.

    I thought I was coping pretty good but on Dec 16th they found another shadow in the brain. I am so scared. I think he is giving up....sleeps all the time. I feel like I have already lost him. I pray and pray but cannot stop crying. I feel as tho I am losing my mind. Nothing seems to help. I cannot bring myself out of the depression. I know there is nothing anyone can do. I thought if I said it to someone it would help but don't think that is the answer. Thanks for listening...

    Take Care of Yourself
    Please take care of yourself. This is a very hard time for both of you. I know words can't help, but it is helpful to know that others are feeling this same pain and dealing with very similar situations. At least it was helpful for me. Venting, crying, feeling like you are losing your mind are shared by many here. After my first post, I had many supportive responses. I cried as I read them and felt like I had actually met people who understood what I was going through. I am very sorry you are facing this challenging and horrible disease. Every scan, test and treatment presents more challenges and scares. I know your main focus right now is your husband, but you can only care for him if you care for yourself. Get help if you need it. Fay
  • ellen93
    ellen93 Member Posts: 2
    Feeling Sorry for Myself
    Geesh. My husband is the one with cancer. The one with extreme fatique, no appetite, and feeling terrible. Yet, I'm feeling sorry for myself. I feel overwhelmed with all the little details that are now ALL my responsibility, plus the little things that I do for him, plus the fact that I do so much of it completely on my own - since he's often not up to any sort of conversation.

    Then, I start feeling bad about myself because I'm being selfish. Yet, it's the way I feel. I'm happy to do all these things, but they seem to never end. Just when I think I'm getting ahead, I remember "oh yeah, I've got to take down the tree," or some other task.

    Just venting. I want to reduce the number of things on my mental "to do" list!!!
  • Barbara53
    Barbara53 Member Posts: 652
    ellen93 said:

    Feeling Sorry for Myself
    Geesh. My husband is the one with cancer. The one with extreme fatique, no appetite, and feeling terrible. Yet, I'm feeling sorry for myself. I feel overwhelmed with all the little details that are now ALL my responsibility, plus the little things that I do for him, plus the fact that I do so much of it completely on my own - since he's often not up to any sort of conversation.

    Then, I start feeling bad about myself because I'm being selfish. Yet, it's the way I feel. I'm happy to do all these things, but they seem to never end. Just when I think I'm getting ahead, I remember "oh yeah, I've got to take down the tree," or some other task.

    Just venting. I want to reduce the number of things on my mental "to do" list!!!

    me too me too
    Ellen,
    It was one of those days when I felt like crying as soon as I woke up, but like you I feel like I have no right to feel sorry for myself. But I do! My mom is my patient, and in the last year I've spent about a third of my days taking care of her. This does not work so well when you're self employed, so now I have no time and no money either. I'm an emotional wreck, but the rest of my family members -- including mom -- seem to be doing okay. Makes me wonder if I'm doing something wrong, but them Mom will tell me how much she appreciates what I do and I blow my nose and keep on trucking. It has been months since I did not feel overwhelmed.

    Just venting. I want my old life back!
  • ellen93
    ellen93 Member Posts: 2
    Barbara53 said:

    me too me too
    Ellen,
    It was one of those days when I felt like crying as soon as I woke up, but like you I feel like I have no right to feel sorry for myself. But I do! My mom is my patient, and in the last year I've spent about a third of my days taking care of her. This does not work so well when you're self employed, so now I have no time and no money either. I'm an emotional wreck, but the rest of my family members -- including mom -- seem to be doing okay. Makes me wonder if I'm doing something wrong, but them Mom will tell me how much she appreciates what I do and I blow my nose and keep on trucking. It has been months since I did not feel overwhelmed.

    Just venting. I want my old life back!

    Wanting our old lives back
    Hi Barbara,

    Thanks for your response. Logically, I know that it's normal for us to want our lives back. Who wouldn't? But, somewhere in the back of our heads, some sense of "comparative justice" tells us that we don't have it as bad as our loved ones, so we shouldn't feel this way. Still, this thought doesn't wipe out our emotions and desires for normalcy. So, let's let ourselves off the hook. We don't need to wallow in self-pity, but acknowledging - and mabye even expressing - our true emotions is, I think, essential to our emotional health, as well as to our ability to cope with the situation.

    I'm actively looking for ways to take things off my "to do" list, as well as taking people up on offers of help, and looking for low stress enjoyable activities. I'm looking out for number one! My sick hubby comes first, but I'm putting myself VERY close to the top of the list!

    Blessings to you.
  • appleyellowgreen
    appleyellowgreen Member Posts: 38 Member
    Inter-vent-ion
    To anyone who's listening, it's time to get venting. It's late. 3:00 a.m. My husband is out of the apartment tonight having a sleep study test done for apnea and I can bang away on the keyboard and no one will wonder who I'm writing to. Yes...who I am online with seems to be one of many, many, many issues that are up for discussion in this house.

    In 2005 I rushed my husband to the hospital with a perforated diverticulum. He had neglected a problem. He'd self treated himself and ended up with peritonitis, a temporary colostomy bag and thanks to an off target CT scan, the discovery of lung cancer in both lungs. Thankfully, still in early stages.

    Two stomach surgeries and two lung surgeries that year left us exhausted. But...six months later his mother, a 90 old ball of fire from Brooklyn, NY was diagnosed with non-Hodgkins lymphoma and moved in with us. We wouldn't let her have her chemo in the sub-standard facilities near her, so in she moved. 20 months later, she returned to Brooklyn. She's still a ball of fire (though there is still some lymphoma on her scans) and we are all burnt out.

    But, she didn't leave soon enough - Steve's lung cancer became active again three months ago and he has since undergone surgery in Boston. Our dr. from NY moved back to Boston and we followed him. Too good not to follow.

    Anyway - I try to take good care of myself and have had more than my hands full with caregiving to two totally narcissistic and frightened people in the house. I am most fortunate that we are in a position to have had some help for his mom, but I feel I'm coming to the end of my rope, even with the help. I'm an artist. It's my work and my therapy. Without it, I'm going to lose it - it being my sanity. I can't work at home because of the fumes from the paints and the glues and hubbie's sensitivity to noise - even crumpling paper and tearing saran wrap. Oh and the constant questions of who are you online with - he's sort of upset that I'm getting into chatting and support groups. It means using and accepting the "c" word as a reality in our home. Of course, I give him all the info I can about his reaching out for help.

    No daylight. No exercise. No meditation. None of this is for him. The list of no's from his lips are endless and I am the most understanding and loyal person I know in this situation. But I've got to get a little of me back before I can give any more of me away.

    Know what I mean? I could go on and on and on. But will spare you. And, it's late and since he's not here, I'm going to sprawl out in the bed and not worry about brushing up against him; or kicking him in my sleep; or tossing and turning. Tonight it's just me. Of course, I know he's coming back at 7 a.m. and I wouldn't have it any other way.

    It's hard to love someone with all your heart and be so damned angry at everything at the same time. Everything being him, the illness, the situation, the cancer, the cold weather - more stuff that's an endless list.

    Thanks for listening.
  • Deb_W
    Deb_W Member Posts: 2
    I'll take you up on your offer
    My husband was diagnosed with Leukemia in Feb 09 and although originally the oral chemotherapy put him in remission he did not stay that way. In September 09 he went into a blast stage and now we are in Houston at MD Anderson for a bone marrow transplant. The stress and pressure of being a caregiver can definitely be overwhelming.