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Looking for caregivers that are taking care of their spouses

infoneeded
Posts: 24
Joined: Jul 2009

I am 40 and my husband is 42. He was diagnosed in May 09 with gbm IV. He just had his second craniotomy. I am trying to figure out how to deal with the emotions of taking care of my husband,kids, house and finances. At the end of the day I just want to be held. The loneliness is starting to become unbearable. How do you deal with the loneliness?

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

You are carrying a huge load on your shoulders. I want to help you so bad and i dont' know to start. By any chance has the hospital offered any kind of a support group for you? I know that God hears our prayers and not only does he hear them he answers them. You need to be loved throughout this. How old are your kids? Would you love to read some good books that could really bless your life? I would send you some. but in the mean time the next time you go to the hospital start asking where can a spouse get help coping with all of the responsibilities that have been layed at your feet. I will give you my email if there is anything I can send you i would be more than happy, live up in Alaska and at best I can write you or do what ever I can. I will pray and lets beleive together right now that your heart gets healed and loneliness turns into comfort. marywest8888@yahoo.com Your not alone.

newbride
Posts: 142
Joined: Jul 2009

I ca certainly relate to the loneliness. My husband and I are both 42. We have been together just 3 1/2 years now. We just got married this past May and I will be losing him before our first wedding anniversary. Like someone said earlier it's hard dealing with friends and families getting through their lives (weddings, etc) when I feel like mine is being ripped apart. I am the only caregiver and it's certainly overwhelming at times - trying to juggle the questions of his family (every day -- how is he? UGH - the same!) and issues with his ex wife wanting all details so she can "prepare" his kids (17 and 16). It's really alot. Luckily hospice has been wonderful giving me the support I need - we have an aid here during the day from 8-4 so I can work and not worry about how he is doing at home alone.

melissaincali's picture
melissaincali
Posts: 33
Joined: Sep 2009

I am 34 and currently sitting in the hospital with my husband in NYC (we live in California) on Thankgiving day as he recovers from a less than positive surgery. He is stage IV colorectal cancer and they found more widespread cancer during what we thought would be a very useful surgery. I understand how difficult it is. We have a 3 year old son and dealing with everything is emotionally draining at the moment. We have a ton of support through amazing friends and family, but there is still loneliness. There is no one who truly understands what I am going through and sometimes it is hard to relate to our friends whose lives are progressing at a nice clip (weddings, new babies, vacations). All the stuff I thought we would be doing at the moment.

Not sure if I have any encouraging words or answers for you, but I wanted you to know I feel your pain and understand where you are coming from. It is nice (but not nice at the same time) to find another caregiver in a similar circumstance. Perhaps we can support each other.
Melissa

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

I also am 34 and my husband is battling colon cancer. Was stage 3c til last week when they found a mass in his lungs and liver. It has been so overwhelmingly hard to watch everyone elses life not skip a beat. Our friends said the other day we are planning a big friend vacation for the summer you two have to go.. I just looked at them puzzled, then went home and cried. It is very lonly and painful not only to have to watch the person you love go through this but have to go through it ourselves. Im here if you ever need me, maybe we can get through this together. Stay strong and my prayers are with you.

Melanie

lisaonthenet
Posts: 68
Joined: Nov 2009

Hello,
My partner of 9+ years has metastatic thyroid cancer and over the past year and a half it's gotten worse. We don't have any children but it's still tough. We both maintain full-time jobs and she's an inspiration to me. She's getting chemo treatments, radiation for mets, and also working full-time. It can get lonely. I find that talking with friends and family, writing, drawing, and spending quality time with her help.

Lisa

sallen2001
Posts: 3
Joined: Jul 2009

That is how we are living our lives. My husband of 38+ years learned in June he has esphogeal cancer stage IV, terminal, pallative care only. At first given 3-6 months, found another doctor for second opinion (total God thing in how this happen)and in September was told after the radition and continued chemo, 2-12 months lean more toward the 2 months. We have passed that now (the 2 months), and I am grateful for everyday we still have as long as he is not in pain.

People will ask me how am I doing, and what is one to say to that? I work on taking everything just for today, one day at a time. A few have said they admire my courage, and I think this is not courage, but faith in God and his gift of helping me live for just today and coping with what is right in front of me. But many times the fear starts to crept in, doing a long term death watch is not easy.

For several years in my life I have worked on my graditudes, kept staying in them, everyday always tried to find things to be thankful for. Many times thought I needed to work on other character defects, but kept going back to graditudes. Now I know why, because without finding something to be gratful for today, I could not make it.

I am dealing with today, I can think about after, I will not let myself think or talk about the "when it happens".
I hope this is not too much off topic, but just wanted to share. I do understand the "talking talking talking"

sallen

spensir
Posts: 50
Joined: Jan 2010

Your story and mine are very much alike. How are you doing today. We are starting radiation the 8th of Feb. Shirley the best to you and many prayers.

dma2z
Posts: 1
Joined: Nov 2009

My husband and I are 38 years old. Two kids, 7 and 4. He was diagnosed with stage 3b, inoperable lung cancer in July of this year. He's been hospitalized due to reactions of chemo and is now basically on a maintenance chemo. We are currently weighing the quality vs quantity of life issue. I have to work full time for our health benefits and to pay the bills and try to keep the kids lives normal as possible: dance class, cubscouts, playdates, etc. My day is so full taking care of other people's needs that by the time I lay into bed I'm exhausted. People are there to help and I'm grateful for their help, but the one thing I crave more than anything is to be held. My husband has neurapathy so bad that he can't be held or hold anyone. The loneliness is just so unbearable at times. I don't have a solution for it, but believe me I can understand what you are going though and sometimes it's enough to know that you are not alone in how you feel. Hang in there, that's all we can do....

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I, too, understand the loneliness. My husband passed away from stage 4 colon cancer Oct. 20, 2009, but the loneliness started way before that. He fought the cancer for 6 years and was in treatment for much of that time. We were really blessed with the six years and made many wonderful memories. Yet, a great deal of time was spent in hospitals, chemo lab, and dr. offices For over a year at the end he slept in his recliner because of pain in his back. I don't have any words of wisdom. I can only tell you that I think your feelings are shared by many of us. Fay

sue Siwek
Posts: 281
Joined: Jun 2009

i have been a caregiver for 10 yrs. now. husband had an anaplastic astrocytoma grade 3. is cancer free at this time. he was graced with another problem, parkinson's. some days are very lonely as his memory and verbal skills are not very good. early on he had speech therapy and physical therapy and that seem to help but the parkinson's has taken over. know the feeling about being held. i am much older than you and the physicalness is something i can deal with more easily. all i can say is find affection with your children, family and friends. it is not the same but will help you through this time. hopefully, once he is through the recovery he will be strong enough to give you that physicalness that you both need. don't give up, you will be so proud of the person that you are becoming. you will adjust as time goes by to all the added responsibilities and in fact feel a certain empowerment from it. i now make all the decisions regarding any investments etc. and those are the things that early on i wanted to do but he wanted control of. now i control everything! even getting the trash out! find the courage and laugh when you can. my hope for you is that at such a young age you and your husband can find some semblance of a normal life someday in the future. in the mean time rely heavily on those that are willing to help. and, please assert yourself, ask for help that is the only sure way of getting it. my heart is with you.

donnare
Posts: 266
Joined: Jun 2009

My husband is stage IV colon cancer with over 11 inoperable mets to his liver at this point. We are currently sitting in the infusion room for treatment number 10 (FOLFOX). It is very difficult - this caregiver role. I've only been at it since May 09. We are both 52.

I don't have much to offer - we are taking it day by day. Have you thought about talking to a professional, or can you reach out to family or friends? I am very lucky - my family and friends have been wonderfully supportive, as well as my co-workers, and my daughters - 21 and 19 - are terrific, a blessing to me and their father.

Even with all of this though, my emotions get away from me sometimes. I went to a counselor, will go again if I need to, and also take an anti-depressant that has taken the edge off.

You are very young, as is your husband. I'm so sorry for all you are going through. I will keep you in my prayers, and send good thoughts your way. If I can be of any support, please post or PM me. I read more than I post - mostly on the colorectal site to gather info - but I know somewhat what you are feeling.

Take care of yourself,
Donna

infoneeded
Posts: 24
Joined: Jul 2009

Thank you for sharing all of your stories. I do have a great support system. I have a friend who has made herself available 24/7. I don't know what I would do without her. The doctors and nurses are our new friends. The biggest challenge I have is the one person that knows me best and the one I have shared everything with is no longer there. It was stated earlier... he and I are the only ones that know exactly what we are dealing with. Even though everyone around me tries to understand nobody can truly know what we are going through and nobody can hold me and make me feel safe and secure like him. I know there is a reason this is happening. I just don't know what that reason is. It has all happened so fast. He was given 6 months to a year. It has now been 7 months. He told me today he would rather die then have another surgery. Surgery is the only way to keep him with us. I have three days to research new treatments and decide which treatment he should be on. Because of the type of cancer he has all treatments are trial and error. His dr is wonderful in helping me but the ultimate decision is always ours to make. It truly sucks because we never know if it will work or not. Again, thank you for sharing.

God Bless All Caregivers.

sue Siwek
Posts: 281
Joined: Jun 2009

it has been 10 years since my husband went through all the chemo and radiation, but to this day he will say that he will not go through that again. there is no easy answer. maybe he will change his mind considering his age. will be thinking of you through this time, keep posting. so glad you have such a strong support group.

Len_J
Posts: 1
Joined: Dec 2009

My thoughts are with you.

My wife was recently dignosed with Breast Cancer.......as a guy, I want to fix it, but can't.....so the only thing I can do is be there for her and be positive and strong for her.......but she is my other half....and sometimes being honest about my fears would not be good for her. The result is isolation.

Herre is what I found has worked for me to ease this:

1.) I process out loud, so having someone, who has been there, or is there to talk to really eases the lonliness. I found a goup of guys going thru the same thing in my home town thru the breast cancer surgeons office that has been great. It helps me realize that what I'm feeling is not unique & helps me prepare for the future. It also helps me get centered for my wife.

2.) I've begun to talk out loud with other familiy & friends about what I'm feeling. I'm finding that some really get it & realize they can't fix me, but are there to support me....that eases the lonliness. I tend to isolate when I get down, and activly working to not isolate & "Bear it alone" helps...alot.

Be kind to yourself.......while you are not the sick one, you are a victim of this in ways different from your husband. It's OK to reach out & help yourself.

Thoughts & prayers.

Len

mysarial
Posts: 14
Joined: Dec 2009

I'm 34, he will be 36 on Dec 30th. We've been married 13 years Next May. His diagnosis is Mesothelioma, and as if cancer wasn't hard enough, we can't figure out where he could have been exposed to asbestos. It's so totally random and rare. I can totally empathize with everything you are going through. Everything has fallen on me, and even though he wants to help, he can't.

As much as I want to be hopeful that he will beat this, the odds are not in his favour, so it's really hard to see most everyone we thought was close to us, avoiding us like the plague. I've never felt more isolated. I often feel like our friends have abandoned us. I haven't heard from many of them in weeks, and the ones I do hear from are very sporadic.

I'm on anti-depressants. No, I'm not medicated out of my head, but I still have to go to work, and then handle everything at home, and they keep me from losing it 15 times a day, so I appreciate the help they give. I've been looking for some kind of a support group for Meso locally, but the disease is so rare, there's nothing very close.

My thought and prayers are with you, I desperately hope you can find what you're looking for. Caregivers have entirely too much on their plate to have to go through it alone.

Just-tired
Posts: 3
Joined: Jan 2010

Are you English, here in the US. I ask because of the way you spelled favor. In any event I want to tell you, if you are in the states, to contact an attorney. His illness is not rare at all. You would be amazed how many people have it. I have worked in the legal field for over 25 years and you can sue the place, thing that caused his illness. A lawyer will know the right thing to do and ask the right questions such as every place he has ever worked, type of work, where he's lived etc.

I know what you mean about friends, it's like if they talk to you they'll catch something. My feeling is that these people weren't really friends. Keep taking your antidepressants. I'm glad they help you, I take them too. Anything to help us cope with the person we love suffering.

God Bless you both and keep the faith.

FlDino
Posts: 11
Joined: Nov 2009

I have been taking care of my wife (with Gallbladder cancer) for a cuple months now. She's come along OK but she refuses to eat very much. She's way too thin now and the nurse says she has to eat more for the proteins to help with healing the incision. One tries not to get frustrated or even mad but it's hard when you know she used to eat very well, now can barely get spoons of cereal in. Can get her to drink 2 boost type drinks in her but that isn't even 1000 calories.

I've comwe to terms with the cancer taking her but have not much patience I guess for her starving herself to death. Anyone have any tricks I can use to get her to eat more?

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

When my husband was having trouble eating, I made him milkshakes with the boost type drinks. That was suggested by a nurse, and it worked well. I hope it works for you, too. Fay

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

My mother has no appetite from advanced ovarian cancer, and she can't comfortably eat but small amounts at a time. Mashed potatoes go over well, and other soft, warm foods like oatmeal seem welcome, too. Last week one day I made her the ultimate sick kid food, milk toast: buttered toast swimming in warm milk with sugar on top. She cleaned her bowl.
Ensure milk chocolate flavor is really tasty, good source of protein, but I think the warm food have a double benefit on cold winter days.

Just-tired
Posts: 3
Joined: Jan 2010

I certainly can identify with you, we all can. I'm sorry for what you and your husband are going through. My husband has prostate cancer, inoperable tumor and it has metatasized to his bones. He broke his femur, had surgery, went for rehab and is now home.It is exhausting. He walks with a walker and suddenly has developed terrible tremors. He is 72 and I am 64. He was diagnosed in 08 and it's been hell ever since.

I know what you mean about the lonliness and wanting to be held. I wish I could crawl into someone's arms just for a hug. You are both so young and my heart breaks for you both. However, this site is very helpful, there are chat rooms where people really listen.

Maybe you could hug your husband, I'm sure he needs it as much as you do, hug your kids, I'm sure they're just as emotionally drained and frightened as you are. Call your friends, family and if that's not possible just hang out here. I wish all the best to you and your family.

ruthelizabeth
Posts: 146
Joined: May 2009

Does insurance cover an aide? Medicare? I need to know for the future. Thanks!

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

In my experience, under Medicare you can get nursing and aide services during the "cure" phase as long as the doctor orders them and the RN from the home health agency (who does an in-home assessment) agrees that they are needed. There are lots of strings attached with home health, though, including some limitations on other services. For example, when my mother needed lymphedema therapy, we had to make sure the dates didn't overlap with home health, because you could not have both at once. Go figure.

Hospice offers many more services including a CNA (certified nursing assistant) to help with bathing, and even limited sitting services so the primary caregiver can get out of the house once in a while. In some areas, hospice patients can be checked into an inpatient hospice facility for a week to give caregivers a break.

With both home health and hospice, do be prepared to ask for what you want, from doctor's orders to lots of services. Keeping your loved one out of the hospital, unless they really need to be there, is always an honorable mission.

Missy245
Posts: 4
Joined: Jan 2010

Good morning!
I am new here and am glad I found a website I can come to. My husband was diagnosed in Nov. with stage 3 Pancreatic cancer that is inoperable. He is on chemo and radiation to try to shrink the tumor.This has been such a rollercoaster ride.He has his good days and bad ones. I just can't seem to do anything right. He is on so many med's it is hard to keep up with but Im doing it.I just feel exausted, confused, angry and even though i don't work I still can't keep up with everything.He doesn't want me to go anywhere so I just sit there wait for him to ask for something.I know i should have waited to write this when I am in a better frame of mind I just needed to vent.Why is he feeling like this?
Thanks for your time,
Missy

arkansasbrains's picture
arkansasbrains
Posts: 38
Joined: Oct 2009

you're not going to feel so great all the time... you're frame of mind will come back around. i was having a COMPLETE nervous breakdown last week. i feel on top of my game now! there IS a total ebb and flow to all of this, isn't there?
it's terrible that the only way to get rid of cancer is to take someone to death's door and then bring them back again.
my husband has brain cancer (though the last MRI looked pretty good after radiation treatment!). after chemo, i'm going to start using the word "cured". but he's very fatigued, and i do feel like i'm the only one who can help him do all the things he needs to in order for him to keep his dignity. so, it's hard to leave him.
i hate the bad days when i just watch him, and wait for him to ask for something. but it sounds like you're doing a great job.
my only advice is to really enjoy each other on the good days. and it gives you something nice to think about and look forward to when you're getting through the bad ones. i hope that doesn't sound lame... sometimes i feel like raking a table, and i know that's the only thing that will help... but i don't and then end up sobbing in the medicaid office instead like some sort of crazy person!! it happens... so, don't worry about it too much.
when i hand my husband's pills to him all at once i usually lean over and whisper, "taste the rainbow..."
let me know if you want to chat about anything.
my name is sydney.

coomar4563
Posts: 2
Joined: Jan 2010

My husband was diagnosed in Nov. with stage 4 lung cancer that has spread to his liver and spleen. He is on chemo and we have confirmation that the tumors have shrunk. I am on the same rollercoaster ride and I also can't do anything right. I am not working and I had the only income so the added financial stress is unbelievable. I have a lot of support and am taking anti-depressants, but I am still completely overwhelmed, feel completely helpless, and don't know how I am ever going to get through this......

Mary

SueC21's picture
SueC21
Posts: 11
Joined: Jan 2010

Mary, I feel your pain. I am 40 and my husband of 20 years is 43, recently (dec 09)dx with stage 4 lung cancer with mets to the brain, right eye and liver. It was difficult news to hear, we have a 16 year old daughter and I feel like my whole world just flipped upside down.

I also have 2 chronic illnesses myself, so physically it has been difficult for me as well as emotionally. I work full time and as much as people say let me know if there is anything we can do, I really don't believe them. There have been times when I either feel so alone or I am playing hostess to hoards of visitors that come to "hang out" at my house.

The only thing that I can say (and this is works for "me" personally) is that I spend a lot of time praying to God to give me the strength to get through this. My faith in God has been a great source of strength for me (i don't mean to preach).

I feel the guilt like it is my responsibility to get us through this, it is enough for him to just have to battle the cancer. But sometimes it is very hard. I am on anti-depressants and going to ask my doctor for something to help me sleep.

I have looked to this site to get support and information and it has really helped. I am thankful to everyone here for there input on this difficult journey. So Mary, you are not alone, a lot of us are here are feeling the same things you are feeling and wondering how we are going to get through today, never mind tomorrow. Don't give up hope, keep fighting for the both of you. You may be surprised that you are stronger than you think.

Wishing you and your family the best.
Sue

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I just wanted to say hello and offer you both some thoughts. Hope is very important. Sometimes, it can just be the hope that you can get through the day, hour, minutes whole. The roller coaster ride is really a tough one. People who haven't been on that particular ride can only guess at the stress you are feeling. On help, I'd like to offer some observations. It is hard for us to accept help because we want or think we should do everything. Independence is well ingrained in us. I, too, tried to do everything. I had a great deal of support and many offers of help during my husband's six year fight with cancer. It wasn't until the last year that I started asking others for small favors like driving to radiation. I was amazed by how many people thanked me for letting them help. Yes, thanked me. They really did want to help. They felt helpless and hated seeing me take so much on. They appreciated the opportunity to do any small thing. I particularly appreciated the lady who enumerated the things she could do. That made it easier to ask her to help with one of the things she enumerated. I try to do that now when I offer help. Take care, and don't be afraid to accept a little help along the way. Fay

coomar4563
Posts: 2
Joined: Jan 2010

Thank you so much for your words of wisdom. I lost my Mother to lymphoma 7 years ago but it took her before she could even consider treatment options which we knew was a blessing because of her age. My Mom barely survived on their fixed income but she always donated money to St. Jude Children's Hospital and my sister and I have continued that tradition. Shortly after my husband was diagnosed, I received a small prayer book from them which contained the following devotional prayer which has been a huge help for me:

Prayer to St. Jude for Caretakers
St. Jude, with Jesus you chose the company of the poor and the sick. As I care for this holy person who suffers, work through me to ease the pain my loved one endures. Help me to know my limits and accept my feelings as I cope with the difficulties and stress. When I am saddened, let me offer my smile. And in doing so, may I glorify you and all the saints in heaven. Nothing is more powerful than real gentleness. Lord Jesus, you healed wounds and disease of all kinds with a loving touch and a heart full of compassion. Teach me your way of humble service. Amen.

I am Catholic and I have friends and family all around the world of all religions praying for us and I know I am a very strong person, but this is still life changing and exhausting. I have been pretty good about asking for help, but the biggest problem is that my husband doesn't want anyone to come to the house or help take care of him.

I am a computer consultant so I spend lots of time online and doing as much research as possible and have found the ACS website to be invaluable. This is one of the best articles I have found so far for caretakers http://www.cancer.org/docroot/MBC/MBC_2x_OtherEffects.asp

Thank you all for your posts.....I will be back often!

Mary

SueC21's picture
SueC21
Posts: 11
Joined: Jan 2010

Mary, thank you for the St. Jude prayer. I too am Catholic and I will definitly start praying to St. Jude. I will also be looking up your recommended article. So for now hang in there friend.

Grandma fay, thank you for your post. I read all of your posts and I think that it is so great that you (and others) take the time to check the website and help so many people, including myself.

You are right, I need to ask for help and to tell people what sort of help I need, but I am so used to doing everything myself that I feel like I am imposing. Although no one has ever turned me down when I have asked. So I need to get better at asking.

Until next time, my thought's and prayers are with all of you.
Sue

JJjanet's picture
JJjanet
Posts: 1
Joined: Aug 2009

My husband is stage IV pancreatic cancer, diagnosed June 09. Things were going exceptionally well on Gemzar, then in late Dec he was offered radiation and wanted to try. They changed his type of chemo and started rad, and everything went crazy downhill fast. I am blessed to have a friend who has experience with Hospice and she told me to start making noise, and get some help. His meds and condition made it dangerous for him to be home alone, and all but impossible for me to deal with. I called the soical worker at the cancer center and she set us up with a hospice that would admit him even though he continues treatment. Hospice has been such a blessing, we've only had them about 2 weeks but MY life is so much less stressed. They order all his meds now, no more trips to 2 to 3 different doctors for different scrips then having to mail them into medco and ensure they are re-ordered in time, they explain things that the doctors/nurses just assume (I guess) that I will/would know, and they have many, many other services. At first I felt like it was giving up to call hospice, when it is, in fact, ensuring my husband has all the best care available to him and ME. Yes it OK to think about us...not many others do. I didn't even know what to ask for as far as help, but once you start talking it seems to come. I had to tell my husband that I was afraid (for his safety and care), that I could not do this alone anymore - that WE needed help. My husband still feels more secure when it is me at home, but understands that I have to go to work and that I have to have breaks. He is afraid...I understand, so am I. If I get robbed I'm angry for a while, he however is being robbed every night. I talk to him, even though I maintain the strength for us both I've had to tell him my fears, cry, and give him the opportunity to do the same. I've even had to say that being sick doesn't give a person the right to be mean, even knowing it's fear and anger talking, and at times I've had to do what I knew I needed to do to take care of me even though he didn't like it, and it made me feel guilty. You are in my prayers. Janet

david54
Posts: 114
Joined: Apr 2009

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.

drum3433
Posts: 3
Joined: Jan 2010

David,
My wife is in her second year of chemotherapy for inoperable breast cancer and lymphodema. because she can not lie flat she sleeps in a recliner. I understand your feelings and as you already seem to know it can be lonely. I wonder and worry that my feelings on certain days are selfish and self centered. I would appreciate a dialogue with anyone that can help reinforce my efforts when I grow weary. I would also hope to offer encouragement when others might need me.

Joe

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I lost my husband to colon cancer in Oct., 2009. He lived and fought hard for over 6 years after his diagnosis. He slept in his recliner for much of the last two years due to pain in his back from an inoperable tumor, so I understand the loneliness. This is a really hard time for both of you. When my husband felt well enough we tried to focus on the now and make memories with family and friends. We made some great memories. Taking care of yourself isn't selfish, it's a necessity. You can't take care of your wife unless you take care of yourself, too. Feel free to PM me or just keep writing on these boards for support. We do have some understanding of what you are feeling. Fay

drum3433
Posts: 3
Joined: Jan 2010

Fay,
thanks for your kind words and encouragement.
Joe

david54
Posts: 114
Joined: Apr 2009

Thanks for the reply Joe; I cannot begin to express how much I appreciate all of you that post here. I admit I am hit and miss posting depending on how busy my life is, yet I am so grateful for this network. I prayed last night to God for an angel to lie next to me and simply hold me; I just want to be held. At the risk of sounding horribly sexist, when was the last time anyone heard a man saying he wants to be held? There is virtually no “Intimacy” between us, its down to a back rub and foot rub and hot water bottle for her distended abdomen, particularly after her Irenotecan. I got so angry with her last weekend then felt like a real horses _ _ _ for my feelings. Sometimes I want to just rip someone’s neck out, the person who pulls out in front of me, or the customer in the line at the market who is short .25 cents and the checker won’t let it slide. What is going on here?

drum3433
Posts: 3
Joined: Jan 2010

Hi David:
Sorry for the delay in responding to you. Work has taken me away from home so I am just catching up.

I hope this note finds you in a good place of mind. We have to learn to manage our feelings towards our spouses. I fear that if I express my frustration it will only lead to making my wife feel worse. I worry she somehow blames herself for her condition.
I cannot tell you the correct thing to do, only the things that I have done. To be blunt there are not many ways to ease the strains of being lonely.

My wife and I have been married for 26 years. I am trying to grasp the idea that this cancer is a battle for both of us. I don't think many people realize that. I feel, who am I to express my feelings to others while she is battling this desease? Won't I be judged as selfish and self centered?

I encourage you to keep strong, avoid the temptation towards anger especially to the world around us ( which is tough!) and pursue your marriage building new memories. Your love of your wife which is manifested in the countless acts of selfless love you provide each day may be just another hug you are giving and each nod, kiss or hand squeeze you receive is an unspoken return of the love.

Joe

abfaul6
Posts: 9
Joined: Mar 2010

Hi David,
You are experiencing what I regard as "anger coming out sideways". It happens to us as humans when we are put into a situation that produces serious changes to our lives. Our character is challenged in areas that are new. Always remember, its ok to be angry, but its what you do with the angry that is important. Often we feel its "wrong to be angry", we judge feelings as right or wrong. They are neither. Its how we handle them that is right or wrong.
So, first acknowledge that you are angry and then look at why, and then deal with that. Often its a break we need. Dont feel guilty for that either - your feelings are ligitimate and unless you address them they will come out sideways, on the road, at the supermarket, on your kids, spouse.... anywhere but the source.
The more you look at what you can change in your response to situations the calmer you will feel. You will also recognize your limits easier. That is hard for all of us.
My husband of 53 years has 4th stage NSCLC. Diagnosed July 08. We now have hospice. He has had several small strokes, double pneumonia and now some dementia. I find his changes in moods the hardest to deal with. One moment I am wonderful, and the next I am picked apart for something, then the mood will change and I am ok again. Then "whats wrong with you". I cannot keep up with the emotional seesaw. Just this morning I "snapped back" - hence I am here reading about other peoples problems which are worse than mine and I find this mechanism helps me keep my balance and cope. I dont feel guilty for "getting away" for a while. By doing this I cope with my latest "angry".
Take care David,
Ann

david54
Posts: 114
Joined: Apr 2009

Thank you all for your support-I appreciate it so much. As long as my 55 year old ankles and knees tolerate it, I find running a great tool for stress.

bobbik4
Posts: 2
Joined: Apr 2010

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.

zack1
Posts: 11
Joined: Mar 2010

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

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

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
Posts: 11
Joined: Mar 2010

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
Posts: 188
Joined: Apr 2010

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
Posts: 2
Joined: Apr 2010

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
Posts: 188
Joined: Apr 2010

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's picture
grandmafay
Posts: 1611
Joined: Aug 2009

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
Posts: 19
Joined: Jun 2010

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
Posts: 6
Joined: Mar 2010

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
Posts: 2
Joined: Apr 2010

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.

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