Looking for caregivers that are taking care of their spouses

grandmafay

zack1 said:

Liver cancer
Hello,
My name is Diana and My husband is Doug. Doug was dx Nov, 2010. He was in the hospital getting a work up for liver transplant. MRI showed Hepatacellular Carcinoma. To many tumors to transplant. The Milan rules say they can't transplant if you have 3 or more tumors of a certain size. My husband has to many. Prognosis 3-6 months. He is on Nexavar now but last MRI last week did not show any difference. I am so sick in my heart and the pain is so great. Our prays are for a miracle of healing. When all doors have been closed from man, God can open a door for a healing from him. So we are standing on the promise's of God and reading healing scriptures daily. I'm so blessed that the lord is with us and caring us on his back. All we have is our Faith and we claim every promise God gave us in the bible. Thank you God for caring for all of us on this board and our families. I want look to my right or to my left, I will only look straight ahead and follow Gods path.
Diana

Diana, I'm so sorry you have
Diana, I'm so sorry you have had such difficult news. My husband passed away from colon cancer in Oct.,2009. His name was also Doug. We, too, were blessed with a strong faith. God was with us at all times even when Doug died. Doug was healed. He is no longer in pain. In the end, I prayed for a quick and peaceful death. We were blessed with that. My Doug never asked the why me question. Instead he asked why not me. He knew that God had a plan for him, and he saw his death as a homecoming. That doesn't mean that he didn't fight for as much time as he could or that he wanted to die. He just wasn't afraid of death. As one man in chemo put it when another patient said he was terminal, "We're all terminal." We were blessed with more time than we expected and less than we would have liked. I will add my voice to yours in asking for healing for your Doug. Just keep in mind that healing and curing can be two very different things. I wish you peace and love. Fay

zack1

grandmafay said:

Diana, I'm so sorry you have
Diana, I'm so sorry you have had such difficult news. My husband passed away from colon cancer in Oct.,2009. His name was also Doug. We, too, were blessed with a strong faith. God was with us at all times even when Doug died. Doug was healed. He is no longer in pain. In the end, I prayed for a quick and peaceful death. We were blessed with that. My Doug never asked the why me question. Instead he asked why not me. He knew that God had a plan for him, and he saw his death as a homecoming. That doesn't mean that he didn't fight for as much time as he could or that he wanted to die. He just wasn't afraid of death. As one man in chemo put it when another patient said he was terminal, "We're all terminal." We were blessed with more time than we expected and less than we would have liked. I will add my voice to yours in asking for healing for your Doug. Just keep in mind that healing and curing can be two very different things. I wish you peace and love. Fay

Fay
Im sorry I am just getting back to this site. Thank you so much for your response. I am very sorry for your loss of Doug not so long ago. In reading so much of your replies to others, I feel you are such a very wise person, and it is such a honor to receive a reply from you. A friend told me just yesterday that when her husband passed away she didn't look at it as if she lost her husband but that she would be joining him as soon as her time has come. So that is the way I will look at it to. I will feel blessed for the time God gives to us and will always keep him tucked in my heart untill we are together again. Diana

GregStahl

How have things been
inforneeded, how have things been to now?
My wife was just diagnosed with BC T3 x3 neg. so I am going to be delaing with the same things. Going to be a long road especially since her parents (who live close enough to help) refuse to aknowledge this at this point.

fireman806

caregivers taking care of spouses
I understand what you are going thru. My wife is taking chemo for brain cancer. We was told 6 weeks after we got married she had a brain tumor. 10 years later found out she had one on the right side cover the whole right side and one on the left covering half of it. I am fighting emotions of taking care of her and paying for the house and other finances with her loss of income. She sleeps all the time sleeping the pain away or gets real emotional like yesterday makes mr wanna cry.....Where is the help for caregivers I have to work to live and come home and care for her and trust me I do love her so that wont change. But I also get lonely like you whats the answer????

GregStahl

fireman806 said:

caregivers taking care of spouses
I understand what you are going thru. My wife is taking chemo for brain cancer. We was told 6 weeks after we got married she had a brain tumor. 10 years later found out she had one on the right side cover the whole right side and one on the left covering half of it. I am fighting emotions of taking care of her and paying for the house and other finances with her loss of income. She sleeps all the time sleeping the pain away or gets real emotional like yesterday makes mr wanna cry.....Where is the help for caregivers I have to work to live and come home and care for her and trust me I do love her so that wont change. But I also get lonely like you whats the answer????

Fireman
Friends, family, ask her Dr and nurses about support groups in your area.

Unfortunatly for me, there are only groups in my area for those fighting the disease, there are spouses, but most dont seem to want any type of group for caregivers.

Remember, all of here on this board are here to help the best we can as well. Look at my profile for email and FB info if you wish.

Good luck
Greg

grandmafay

fireman806 said:

caregivers taking care of spouses
I understand what you are going thru. My wife is taking chemo for brain cancer. We was told 6 weeks after we got married she had a brain tumor. 10 years later found out she had one on the right side cover the whole right side and one on the left covering half of it. I am fighting emotions of taking care of her and paying for the house and other finances with her loss of income. She sleeps all the time sleeping the pain away or gets real emotional like yesterday makes mr wanna cry.....Where is the help for caregivers I have to work to live and come home and care for her and trust me I do love her so that wont change. But I also get lonely like you whats the answer????

Hi, fireman806
There isn't one good answer. In fact, I'm not sure there're really any good answers. In many ways we just have to learn to live with the loneliness. I agree that family and friends can help the most. Reach out to them and don't be afraid to ask for help. Many times people want to help and just don't know how. Support groups can be helpful, too. Our cancer support group is for both the cancer survivor and the support people. I still go even though I lost my husband in Oct. We both found good friends and support there. Do try to find some time to just get away for a few hours to do the things you enjoy even if it is just coffee with a friend. I am really sorry that you and your wife are going through this. This is one of the most difficult things you will ever have to face. Take care, Fay

MrsPlate

I keep bussy....
I'm 30, my husband is 37- he has GBM4- so far only in his spine, but it has spread- was one tumor, now it looks like more... we shall see. We have a 12 yr old, a 4 yr old and I am currently 38 weeks pregnant.

As far as dealing with the day to day- the crap that comes with general life, like paying bills and whatnot, well I kind of fly by the seat of my pants on that one. I do what I can when he sleeps or when I'm not beat... it's only going to get harder once the baby comes. I have called in family to help out alot- my parents helped with the re-arrange of the house to make room for the baby, and they take the kids all time- every time something new takes us to the ER or the hospital... and others have pitched in getting things done around the house because I fall behind on, well, everything.

The lonliness- well, not sure how to deal with that. I focus on the kids, I talk to my Mom alot (I dump on her alot, probably more than I should, but she's a great listener). When I need a break I either engross myself in baby stuff, kid stuff, or a book... it takes my mind off of things for a few minutes, long enough to get tired and ready to go to bed.

caribou

Hoo boy
I've been reading through this whole long thread and I relate so much to everyone posting here. I'm familiar with all of it--the sadness, loneliness, anger coming out sideways. I especially relate to those of you who are parents, working full-time for the much needed income and health benefits, managing the finances and most everything else, as I'm in the same boat. It is a lot to handle. I no longer have energy to give to others in any of the ways that sustain relationships--talking on the phone, emailing, sending birthday cards, whatever. Not a good state for maintaining relationships or a support system.

My husband and I are both in our early 40's, with a 3 year old son. We are coming up on the end of our 4th year since my husband's initial diagnosis, and are well into our 3rd year of Stage IV. He has been having annual recurrences--we are 4 months out from the most recent one--and there's no telling where things will head or how long we'll be in this cycle of 9 months per year of treatment/recovery and 3 months relative normalcy.

Lately I have been feeling not so much lonely, but alone. I've taken to sitting meditation to deal with all the negative emotions and the real degree of helplessness that comes along with the cancer caregiving situation. I just do it for 10 minutes or so here and there, when I can fit it in and am not feeling resistant. I can't say it leaves me completely peaceful, but it does take the edge off and leaves me with a feeling that things are more manageable.

Thank you all for the honesty of your posts. When I feel completely alone, I can come here and it helps.

bobbik4

caribou said:

Hoo boy
I've been reading through this whole long thread and I relate so much to everyone posting here. I'm familiar with all of it--the sadness, loneliness, anger coming out sideways. I especially relate to those of you who are parents, working full-time for the much needed income and health benefits, managing the finances and most everything else, as I'm in the same boat. It is a lot to handle. I no longer have energy to give to others in any of the ways that sustain relationships--talking on the phone, emailing, sending birthday cards, whatever. Not a good state for maintaining relationships or a support system.

My husband and I are both in our early 40's, with a 3 year old son. We are coming up on the end of our 4th year since my husband's initial diagnosis, and are well into our 3rd year of Stage IV. He has been having annual recurrences--we are 4 months out from the most recent one--and there's no telling where things will head or how long we'll be in this cycle of 9 months per year of treatment/recovery and 3 months relative normalcy.

Lately I have been feeling not so much lonely, but alone. I've taken to sitting meditation to deal with all the negative emotions and the real degree of helplessness that comes along with the cancer caregiving situation. I just do it for 10 minutes or so here and there, when I can fit it in and am not feeling resistant. I can't say it leaves me completely peaceful, but it does take the edge off and leaves me with a feeling that things are more manageable.

Thank you all for the honesty of your posts. When I feel completely alone, I can come here and it helps.

My husband has colon cancer
Hi. My husband was diagnosed with colon cancer on March 22, 2010. He is undergoing chemo right now. He is handling this whole thing way better than I am. We are both Christians which is how we are dealing with it but it is still hard. He is only 42 and we have only been married 4 and 1/2 years. He is so supportive of me which just continues to amaze me. He said that soemtimes he thinks it is harder to be the spouse than the one who has cancer. I am sure that is not true but it definitely is difficult. It is nice to get on here and talk to people who are going through the same things.

bobbik4

david54 said:

Loneliness
My wife is in her second year of chemotherapy for stage IV colon cancer. I feel lonely at night after she falls asleep on the couch after I have massaged her swollen ankles for an hour or more. It’s uncanny, she can be asleep and I will change the station and its like an alarm clock goes off. I can’t tell you how many reruns of “Law and Order” and “CSI Vegas, Miami, New York” I’ve seen. I think I know the scripts of each episode of NCIS (I don’t like Dinozzo! He’s such a smart _ _ _ !) But I regress. There is really no one who would understand what we are experiencing like those who are ……experiencing it. I used to get caught up in “When” and “If” and “How” it will end. I don’t do that so much anymore. Life seems to have developed its own routine that I thought I would never have to deal with. But yes, I too get lonely.

Loneliness
Hi David. My husband has stage lll colon cancer. He is going through chemo right now. I don't necessarily get lonely as we are together a lot but sometimes I do feel as though I don't really have anyone to talk to who understands. My husband is wonderful and is always there for me to talk to but as he admits, he doesn't know how I feel being the spouse anymore than I know how he feels being the one who is sick. He has an awesome attitude and is completely at peace with whatever happens. I am not there yet. Iknow that God has a plan for our life but it is so hard to watch my husband go through this. This board is nice because we can all talk to each other. Thanks for your posts.

lilli1020

caribou said:

Hoo boy
I've been reading through this whole long thread and I relate so much to everyone posting here. I'm familiar with all of it--the sadness, loneliness, anger coming out sideways. I especially relate to those of you who are parents, working full-time for the much needed income and health benefits, managing the finances and most everything else, as I'm in the same boat. It is a lot to handle. I no longer have energy to give to others in any of the ways that sustain relationships--talking on the phone, emailing, sending birthday cards, whatever. Not a good state for maintaining relationships or a support system.

My husband and I are both in our early 40's, with a 3 year old son. We are coming up on the end of our 4th year since my husband's initial diagnosis, and are well into our 3rd year of Stage IV. He has been having annual recurrences--we are 4 months out from the most recent one--and there's no telling where things will head or how long we'll be in this cycle of 9 months per year of treatment/recovery and 3 months relative normalcy.

Lately I have been feeling not so much lonely, but alone. I've taken to sitting meditation to deal with all the negative emotions and the real degree of helplessness that comes along with the cancer caregiving situation. I just do it for 10 minutes or so here and there, when I can fit it in and am not feeling resistant. I can't say it leaves me completely peaceful, but it does take the edge off and leaves me with a feeling that things are more manageable.

Thank you all for the honesty of your posts. When I feel completely alone, I can come here and it helps.

hoo boy
You said it....not so much lonely, but alone. I am still reeling from the acceptance that I won't have my husband "forever and ever" and the thought of living without him just kills me. I am sure I don't even know "alone" yet. I feel so helpless, not being able to do much for his discomfort, appetite, etc. except give him his meds and help w/his daily care. This role has been hell for me...I have always been the 1 to depend on him, even tho I am pretty independent....I pray and pray and pray...that makes me feel better, but he is in the middle of the "religion" thing and not too interested in hearing about being a christian from me. I just wish I could wake up from this nightmare.......