caregivers chat room

kasey52
kasey52 Member Posts: 4
edited March 2014 in Caregivers #1
I am interested in starting a weekly chat room to discuss the issues of being a caregiver. Anyone interested?. Let me know.
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Comments

  • survivor51
    survivor51 Member Posts: 276
    Kasey,
    I think that is a fantastic idea. I have two caregivers and will let them know.
  • caregiverk
    caregiverk Member Posts: 1
    A new comer that needs help
    I chat room for caregivers is exactly what i'm looking for. I've been taking care of my mom for about two years and i've experienced a range of emotions. We've had some highs and some lows. Some days she is overly sweet and other days she's saying some pretty ugly things to me. I have two brothers but they work and have families of their own just like i do,but they rarely come home to help out because of their obligations. I'm blessed to have my own business and my mother in law runs it while i'm away. Another blessing is the fact that my husband releases me without regrets and complaints to do what all i can to assist her. With all of this sometimes i feel that my ultimate sacrifice isn't seen and that those who rarely do anything are more appreciated. Being here is almost running me crazy. The mood swings, the negative words about me thrown from time to time is mentally draining in turn physically draining. One minute i'm the best person in the world and the next day i'm pretty much the worst person in the world. I feel guilty when i get angry and upset at the things that are said and done by my mother and even by my brothers who can do more than what they're doing. But, at the same time i think about that our emotions are all apart of us being human and that Jesus even got angry. I know that sometimes she can't help it because she is sick and is aggravated about the fact that she can't do for herself like she use to, but at times i get very upset because she's forgetting how much i'm giving up. When i think that way i feel like i'm being selfish. Anyway is there anybody out their that has been where i am now? Please tell me what did you do to cope? I pray and I fast but i don't know anybody that i can gleam from that has experienced what i'm experiencing.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    A new comer that needs help
    I chat room for caregivers is exactly what i'm looking for. I've been taking care of my mom for about two years and i've experienced a range of emotions. We've had some highs and some lows. Some days she is overly sweet and other days she's saying some pretty ugly things to me. I have two brothers but they work and have families of their own just like i do,but they rarely come home to help out because of their obligations. I'm blessed to have my own business and my mother in law runs it while i'm away. Another blessing is the fact that my husband releases me without regrets and complaints to do what all i can to assist her. With all of this sometimes i feel that my ultimate sacrifice isn't seen and that those who rarely do anything are more appreciated. Being here is almost running me crazy. The mood swings, the negative words about me thrown from time to time is mentally draining in turn physically draining. One minute i'm the best person in the world and the next day i'm pretty much the worst person in the world. I feel guilty when i get angry and upset at the things that are said and done by my mother and even by my brothers who can do more than what they're doing. But, at the same time i think about that our emotions are all apart of us being human and that Jesus even got angry. I know that sometimes she can't help it because she is sick and is aggravated about the fact that she can't do for herself like she use to, but at times i get very upset because she's forgetting how much i'm giving up. When i think that way i feel like i'm being selfish. Anyway is there anybody out their that has been where i am now? Please tell me what did you do to cope? I pray and I fast but i don't know anybody that i can gleam from that has experienced what i'm experiencing.

    chat room
    caregiverk:

    Kasey's idea is a great one, and easy to facilitate. I think all you need to do is establish a time and day each week (or month or whatever) when you are going to do it, decide on which room you are going to use, and do it.

    I believe that CSN is looking forward to such groups developing over time, which is why they established two rooms beyond the 'lobby'.

    In the meantime, be aware that the regular chatroom is open to all, and some of us actually prefer it that way. Personally, I believe that there is much that can be learned by survivors about the travails of caregivers, and vice versa, just as I believe that as a head/neck and lung cancer survivor, I can still learn much from those who have experienced other cancers.

    The main point is, you are very welcome to come into the chat room right now and join the crowd. It is certainly not limited to survivors and, as you may imagine, some folks are both survivors AND caregivers!

    Looking forward to meeting you in the Chat Room!

    Take care,

    Joe
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    A new comer that needs help
    I chat room for caregivers is exactly what i'm looking for. I've been taking care of my mom for about two years and i've experienced a range of emotions. We've had some highs and some lows. Some days she is overly sweet and other days she's saying some pretty ugly things to me. I have two brothers but they work and have families of their own just like i do,but they rarely come home to help out because of their obligations. I'm blessed to have my own business and my mother in law runs it while i'm away. Another blessing is the fact that my husband releases me without regrets and complaints to do what all i can to assist her. With all of this sometimes i feel that my ultimate sacrifice isn't seen and that those who rarely do anything are more appreciated. Being here is almost running me crazy. The mood swings, the negative words about me thrown from time to time is mentally draining in turn physically draining. One minute i'm the best person in the world and the next day i'm pretty much the worst person in the world. I feel guilty when i get angry and upset at the things that are said and done by my mother and even by my brothers who can do more than what they're doing. But, at the same time i think about that our emotions are all apart of us being human and that Jesus even got angry. I know that sometimes she can't help it because she is sick and is aggravated about the fact that she can't do for herself like she use to, but at times i get very upset because she's forgetting how much i'm giving up. When i think that way i feel like i'm being selfish. Anyway is there anybody out their that has been where i am now? Please tell me what did you do to cope? I pray and I fast but i don't know anybody that i can gleam from that has experienced what i'm experiencing.

    Needing help
    In response to your isses beyond the chatroom, which are more important, let me simply advise that to be a good caregiver, you must take good care of yourself :). Make time for yourself, and schedule that time so that it becomes a part of what you regularly, rather than something you find reasons to set aside.

    Whether it is a long walk, a bike ride, a trip to the library or book store, whatever it is, make time for yourself doing something that you find comfort and enjoyment in. Your absences will, perhaps, also make your presence at least a bit more appreciated.

    Good luck!

    Take care,

    Joe
  • marybear
    marybear Member Posts: 64

    Needing help
    In response to your isses beyond the chatroom, which are more important, let me simply advise that to be a good caregiver, you must take good care of yourself :). Make time for yourself, and schedule that time so that it becomes a part of what you regularly, rather than something you find reasons to set aside.

    Whether it is a long walk, a bike ride, a trip to the library or book store, whatever it is, make time for yourself doing something that you find comfort and enjoyment in. Your absences will, perhaps, also make your presence at least a bit more appreciated.

    Good luck!

    Take care,

    Joe

    caregivers
    hi joe it is mary from chatroom keep missing you i dont come on in the daytime i am caregiver to my husband stage 4 lungcancer no surgery he is getting weaker by the week as of yesterday his primary care phy told me after he evealuted him maybe by thanksgiving that would be it maybe sooner i would like a time frame even know ones knows but god would love a chat room for caregivers please keep me informed God bless Joe talk to you soon Mary
  • hollyw80
    hollyw80 Member Posts: 5
    CHATROOM
    I AM NEW TO THIS AND AM JUST STARTING MY JOURNEY AS A CAREGIVER AND WOULD LOVE TO BE ABLE TO TALK TO OTHER CAREGIVERS. LET ME KNOW THAT STATUS. THANK YOU
  • dell3
    dell3 Member Posts: 7
    Will definetely like a chat
    Will definetely like a chat room, please let us know
  • arbrab
    arbrab Member Posts: 55
    caregivers chat room
    In 2007 march my soul mate passed from lung cancer. I was his soul caregiver. A job that I wouldn't trade for in a million years. I have been in the Chat Room that Joe is talking about and have learned so much from survivors to caregivers old and new. But, we do need a place where it's just caregivers. Where we can talk about what each of us has been through and maybe help each other with the after. I go to the chat room because I still haven't a clue as to what I should be doing with my life now. And there are angels in there that have helped me deal with alot of issues. But, someone else with a life experience that has lost a loved one to cancer or death in general is sometimes a greater help than those who have not experienced this at all. I in fact just lost my first sibling to lung cancer = he was 62. Amd #4 of 11 kids. Also I am dealing with #8 a sister going through chemo and radiation for tongue cancer. Yes, i do have a full plate. It is hard to deal with the stress of just being a caregiver, but the added stress does take it's toll.
    I would have to tell my mate everywhere I went in the house or just if I stepped outside to get fresh air. And alot of times wanted to just pull my hair out. So Please lets start a chat room for caregivers. we can still go to the regular chat room if we want.
  • arbrab
    arbrab Member Posts: 55
    caregivers chat
    so i know that you have already had a caregivers chat, but is there any way that the caregivers can be notified when these chats are. The chat room is a very good place for anyone, but I would like to chat with other surviving caregivers and know what their feelings are, what they are going through and how they are dealing with life now that their loved one is gone.

    Thanks
    barbra
  • itismepsa
    itismepsa Member Posts: 21 Member
    Any word on chatroom
    I am interested in the chatroom has anyone started it yet? It would be of great help!
  • itismepsa
    itismepsa Member Posts: 21 Member
    new blog address
    msn offers a free blog site. if anyone is interested my new blog site is http://itismepsa.spaces.live.com/blog/?&_c02_vws=1. if anyone wants we can chat.
    Paula
  • 2006 mainewife
    2006 mainewife Member Posts: 3
    itismepsa said:

    new blog address
    msn offers a free blog site. if anyone is interested my new blog site is http://itismepsa.spaces.live.com/blog/?&_c02_vws=1. if anyone wants we can chat.
    Paula

    caregivers chat room
    Yes it would be nice to see a chat room for caregivers too as I am a caregiver for my Husband who has a few months left he has a brain tumor GBM stage 4
  • Mannie
    Mannie Member Posts: 52

    caregivers chat room
    Yes it would be nice to see a chat room for caregivers too as I am a caregiver for my Husband who has a few months left he has a brain tumor GBM stage 4

    2006 mainwife
    I noticed that your husband was diagnosed with a GBM in March 2007. That was my original diagnosis in March 2007 and when I read that I felt like someone sort of punched me in the gut because it took me back to that unfortunate St. Patrick's Day. My diagnosis was changed to an astrocytoma about 4 months later. Fortunately for me I am as cancer free as I can be and we are watching what's left so I'm doing well. How is your husband doing? My heart really goes out to you because I know what you're dealing with, I remember. I will give you my e-mail address if you're interested, let me know.

    Please take good care of yourself.

    Mannie
  • marybear
    marybear Member Posts: 64

    caregivers chat room
    Yes it would be nice to see a chat room for caregivers too as I am a caregiver for my Husband who has a few months left he has a brain tumor GBM stage 4

    caregivers chat room
    Hi my name is mary and i am caregiver to my hubby he has stage4 lung cancer nscl no surgery spread to lymph nodes and other lung diagnosed in june of 2008 only symptom was weight loss too far gone now nothing they can do we tried one chemo it almost killed him he ended up in hospital in ccu with heart failure no more chemo we tried 3 months tarceva lung cancer pill no good tumor got larger as of dec5,08 cat scan tumors on spleen and kidneys we have hospice now in the house he wants to die at home i am trying to keep to his wishes he may have a week or two or a month dont know up to God now very hard on me taking care of him watching him slowly die in front of me how are you handling your husbands condition mainewife it is so hard please keep in touch i will give you my email so you contact me personally cant wait for a chatroom just for caregivers my email is [email protected] hang in there Mary
  • hunpot
    hunpot Member Posts: 90 Member
    marybear said:

    caregivers chat room
    Hi my name is mary and i am caregiver to my hubby he has stage4 lung cancer nscl no surgery spread to lymph nodes and other lung diagnosed in june of 2008 only symptom was weight loss too far gone now nothing they can do we tried one chemo it almost killed him he ended up in hospital in ccu with heart failure no more chemo we tried 3 months tarceva lung cancer pill no good tumor got larger as of dec5,08 cat scan tumors on spleen and kidneys we have hospice now in the house he wants to die at home i am trying to keep to his wishes he may have a week or two or a month dont know up to God now very hard on me taking care of him watching him slowly die in front of me how are you handling your husbands condition mainewife it is so hard please keep in touch i will give you my email so you contact me personally cant wait for a chatroom just for caregivers my email is [email protected] hang in there Mary

    mom
    mary i had to take care of mom with hospice as her wishes too were to stay at home she used to be CNA nurse so she knew how nursing homes were. It was the hardest thing to sit and watch your loved one die and wither away and suffer nowing there is nothing you can do or say to make it easier.
    All i could do was just give her encouragment, love, hold her, support and be there for her and try to tell her everything i wanted her to know before it was too late just sit and listen to her or just be there so she wasnt alone. maybe it was bad of me but i just wanted her to fight and not leave me it was so hard to sit with her everyday nowing she was going to die was just a matter of time but with the great nurses and volunteers of hospice they seemed to make things a bit easier explaning and telling me what goes on. I was able to keep mom home up until 4 days before she passed she told me she couldnt do it anymore and needed to go to nursing home that she didnt want to be alone even for a second, i CRIED AND CRIED and told her NO but she told me it was time i told her she was crazy she was doing great walking eating, bathing everything on her own, we had everything under control but she must of new she insisted she always thought she was a burden and didnt want me to have to take care of her even though i wouldnt of done anything differntly. Think she wanted to give me break at night or something ill never now. So we put her in home she was good and happy with it she liked it there for 2 days she was fine then on saturday something happened was strange all of a sudden and no warning sat by bedside and didnt move for 2 days till she passed.

    My heart goes out to you I could only imagine if it was my husband he is the love of my life I dont know what i would do without him.

    Try to stay strong and just be there for your husband everyday, tell him you love him, support him, hold him,tell him hes been great to you and youll never forget him also tell him youll be OKAY, our loves one fight and struggle because they dont want to leave us behind they want to know we will be OKAY and be able to survive with out them, I think that is what mom liked hearing the most, it was so hard but i had to tell her i would be okay and be strong for her and go on and make her happy. MAy god bless you during this difficult time and guide you along.
  • marybear
    marybear Member Posts: 64
    mom thank you
    i am sorry to hear what you went through with your mom but joe wants to die at home trying to give him his wish hospice doctor coming tomorrow morning with tell me me i am sure i love him with all my heart but i cant do this for a month or 2 need to know what is going on here
    his hands are swollen the hospice nurse expects me to change his bandages everyother day i dont have time for this she comes in once a week i pay privatley for a girl to come in and change his whole colostomy wafer and all 2 times a week a aide will not help me she cant change his wound dressings or colostomy so what is the point i will do it on my own i dont need a aide yet until he cant get out of bed anymore then will consider one thank you for replying to me best wishes for a happy and healty new year i dont know what the new year holds for me but pray to god to take him quickly so he doesnt suffer or me thank you mary
  • hunpot
    hunpot Member Posts: 90 Member
    marybear said:

    mom thank you
    i am sorry to hear what you went through with your mom but joe wants to die at home trying to give him his wish hospice doctor coming tomorrow morning with tell me me i am sure i love him with all my heart but i cant do this for a month or 2 need to know what is going on here
    his hands are swollen the hospice nurse expects me to change his bandages everyother day i dont have time for this she comes in once a week i pay privatley for a girl to come in and change his whole colostomy wafer and all 2 times a week a aide will not help me she cant change his wound dressings or colostomy so what is the point i will do it on my own i dont need a aide yet until he cant get out of bed anymore then will consider one thank you for replying to me best wishes for a happy and healty new year i dont know what the new year holds for me but pray to god to take him quickly so he doesnt suffer or me thank you mary

    I hope you are able to
    I hope you are able to fullfill his wishes he may change his mind i wanted mom to die at home and thats what she really wanted but she changed her mind. Its strange how the mind thinks during difficult times.
    Hospice should be coming in more often maybe you can ask and suggest, moms nurse came in 2 to 3 times a week sometimes more when she was having bad weeks. But they do expect you as the primary caregiver to take care of their needs, meds, bandages, feedings,etcc its gets to be alot on us when all we want to do is just hold them and spend time not take care of them. moms aide would clean the house for me change her bed and do laundry and clean bathroom etcc that way was one less thing for me to do they wouldnt help take care of mom either but if i had to run to store for something at least they were there for half hour, hour to give me a break and if something happened they could callme. I took all the help i could get from anyone even had hopsice volunteers come to the house 2 days week for a few hours so i could do errands or just spend an hour with friends, hubby or family members get a bite to eat.
    I hope your new year is well it may start off hard but in time will get better try to take care of yourself so joe sees that you are fine will make his time left more pleasant and he may even let himself go sooner its hard to see the one we love die and suffer but we know in the end they are finally at peace and no more pain.I hated hearing those words form everyone but now i understand and thats what gets me through each and everyday is nowing shes in no more pain and not suffering as she suffered so much the last month. GOD BLESS
  • itismepsa
    itismepsa Member Posts: 21 Member
    weekly chat room opening
    On Tuesday's at 6 p.m. CST we will use chatroom 2 for any caregivers interested. Anyone interested please join us. If anyone would have a better time let us know.
    Paula
  • jonib
    jonib Member Posts: 1
    Caregiver
    My husband has Stage IV Male Breast Cancer. He has been fighting this for 4 1/2 years. He decided last month he was done with treatment. We have brought Hospice in for the past month on a weekly basis, until we need them more. I am still working full time. My heart is breaking as I watch this disease literaly eat away at him. He is down to 142 pounds, skin and bones. I know that things are going to get worse. The doctor told us last month that he would not see Christmas 09. I know that we have some really rough times ahead of us. I think the Hospice program will be wonderful for us. I guess my question is when do you know when you need to stop working to be with them 24/7. jonib
  • Gabbym
    Gabbym Member Posts: 8

    A new comer that needs help
    I chat room for caregivers is exactly what i'm looking for. I've been taking care of my mom for about two years and i've experienced a range of emotions. We've had some highs and some lows. Some days she is overly sweet and other days she's saying some pretty ugly things to me. I have two brothers but they work and have families of their own just like i do,but they rarely come home to help out because of their obligations. I'm blessed to have my own business and my mother in law runs it while i'm away. Another blessing is the fact that my husband releases me without regrets and complaints to do what all i can to assist her. With all of this sometimes i feel that my ultimate sacrifice isn't seen and that those who rarely do anything are more appreciated. Being here is almost running me crazy. The mood swings, the negative words about me thrown from time to time is mentally draining in turn physically draining. One minute i'm the best person in the world and the next day i'm pretty much the worst person in the world. I feel guilty when i get angry and upset at the things that are said and done by my mother and even by my brothers who can do more than what they're doing. But, at the same time i think about that our emotions are all apart of us being human and that Jesus even got angry. I know that sometimes she can't help it because she is sick and is aggravated about the fact that she can't do for herself like she use to, but at times i get very upset because she's forgetting how much i'm giving up. When i think that way i feel like i'm being selfish. Anyway is there anybody out their that has been where i am now? Please tell me what did you do to cope? I pray and I fast but i don't know anybody that i can gleam from that has experienced what i'm experiencing.

    caregiving
    Gosh, some of your emotions sound just like mine. Our cases are a little different, i am caring for my husband of 29 years. It is heartbreaking to go down this road. I know the mood swings and i often get angry. I have 4 children, 3 lives close by and 1 is in Japan. When their DAd first got sick they were right there. Now, it seems to me and him that unless i call and ask them for some help ,they are not around as often.There are days that my husband says things to me or snaps at me when i remind him of his meds or another appointment that he has. I tell him i will quit if he does not stop yelling at me. I have said that so often he just smiles now. Let's be honest, our worlds have turned upside down, whether it is your Mom or my husband, life is not what we knew. I am starting to realize that it is one day at a time and one step at a time. You definately need your own time and space, I have one night a week i go to dinner with my best friend and vent. When he was under 24 hour care, i had one of our children come to the house and sit for a few hours. You need this. You are not selfish, you are human. I have had a few great comments from some of the people on this diccusion board, we are all here to help each other. You are not alone, take that time and God Bless you and your Mom.
    Judy