CSN Login
Members Online: 15

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

nevergiveup7
Posts: 2
Joined: Nov 2009

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.

blk1978
Posts: 2
Joined: Nov 2009

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's picture
geotina
Posts: 2059
Joined: Oct 2009

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's picture
B 1
Posts: 19
Joined: Oct 2009

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..

nevergiveup7
Posts: 2
Joined: Nov 2009

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's picture
NBTXGIRL
Posts: 31
Joined: Aug 2009

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

StarLitSkyyz
Posts: 1
Joined: Dec 2009

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".

mysarial
Posts: 14
Joined: Dec 2009

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.

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

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

quig801
Posts: 1
Joined: Dec 2009

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

CherylMike
Posts: 118
Joined: Oct 2009

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's picture
grandmafay
Posts: 1613
Joined: Aug 2009

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

jooliep
Posts: 2
Joined: Jan 2010

I teared up myself reading your post. My husband was diagnosed with advanced gastric cancer in July of 2008, and died 9 months later. I was terrified to admit I was worried about what would happen when he died, and felt so selfish for daring to worry about finances. One of his life insurance policies was about to end, and his employment status was up in the air (General Motors). He finally had to bring up the topic, and like your husband, he was most worried about me. Fortunately, things worked out, and at the end, when we both knew the time was getting close, I was able to assure him that I would be ok, and pointed out to him all the ways that he had provided for me. He went downhill and died very quickly after that conversation, and I know that it was one we had to have for him to go in peace and escape the suffering.
I have now been diagnosed with breast cancer myself, and I am grateful every day to him that it is possible to work as little as I need to for the time being, and that our house is safe. I hurt for those who are struggling with cancer, and trying to support a family and hold onto a job and their home at the same time. God blessed me with Brett.

david54
Posts: 115
Joined: Apr 2009

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
Posts: 1
Joined: Jul 2007

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's picture
grandmafay
Posts: 1613
Joined: Aug 2009

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

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Paulmywife,
Hope today is finding you in a better place. I am a caregiver for my dad. He has survived esophageal cancer, and now has mets to his liver.I have been where you are, more than once. I have a strong faith in God. My faith is what has carried me through this whole journey. What I find most helpful is this site, getting to know people who are going through all of the same emotions as me, writing a journal. We have a family journal. Me, my dad, and my mom all write in it. It is most helpful. Have you considered going to therapy or getting help for the depression? There are a lot of anti depression meds. Best of luck. Keep us posted. Prayers are being said for you and your husband.
Tina

ellen93
Posts: 2
Joined: Dec 2009

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's picture
Barbara53
Posts: 659
Joined: Aug 2009

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
Posts: 2
Joined: Dec 2009

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.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

There is no time for guilt. You are doing the best you can. My husband passed away in Oct. after a six year battle with cancer. He often told me that I had the hardest role as caregiver. Once when I suggested that it would be easier if it was me with cancer, he told me I was selfish and that he didn't even want to think about me having late stage cancer. He didn't think he could deal with it. Actually, we dealt with his cancer as we dealt with everything - together. We shared our feelings, laughed together, and cried together. Now, my greatest fear has come true. I am alone. I am, however, surviving. I have a strong support system with family, friends, and church family. I did call on them to help us through the six years fighting cancer, and now I call on them when I need help. Hang in there, take care of yourself, and remember to say I love you often. Fay

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

Dont be so hard on yourself I lost Jack in Novemeber and I did everything for him and yea there were days I just wanted to quit I was so tired of taking care of him all by my self, I was mad at the nurse they sent because these nurses were getting paid 30.00 plus a hour and alot of them did not know how to suction him and they would fall alseep at night, why be there , I was sitting up all night anyway, Your not being selfish you are just overwhelm with everything going on, I can tell you to take time for yourself but I have been there you dont it is all about the patient, don't get me wrong I loved Jack very much, and I would do it again it a heartbeat, Its not that you are being selfish you are exhausted, I was so happy when his sister finally came over, just so I could take a shower without rushing, One thing I was told when Jack got cancer was Patty be prepared for all of this, Jack has the easy part, you have the hard job, you have to be by his side then some how you have to figure out how to go on when he is gone, I never forgot that , I was like I can do this I have been in the medical field for over 15 years I can do this, but nothing could prepare me for taking care of Jack on my own and watching him go through all that he did and then watching him die, there is so much I think about now , that I wish I could have said, but I would not change anything about taking care of him, but you are not being selfish , your doing a great job, just do the best you can , and let him know you love him, Stay strong, my prayers are with you,

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

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
Posts: 2
Joined: Jan 2010

I read your comments and felt like I could've written a lot of that myself. I completely understand how on why hand you love this person so much and yet it seems like everything you do is either a nuisance or just not right. I have just started looking for online support groups today as I feel very alone. I'm finding out that I'm really not though.

My husband was diagnosed with Leukemia in Feb 09 and was in remissiom until Sept when he went into blast stage. Our oncologist in Colorado Springs, CO referred us to a specialist in Houston, TX. and we are now in Houston getting a bone marrow transplant. We will have to be here for a minimum of 3 months, which adds to the stress.

It is hard when you feel like you don't have any time at all for yourself and yet feel guilty when you try to get a break. Everything I do seems to either irritate my husband or just be wrong. There are times you just want to scream.

Thanks for sharing and listening. Debbie

Deb_W
Posts: 2
Joined: Jan 2010

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.

bookgeek71
Posts: 5
Joined: Jan 2010

Hi, I moved to TX last February to take care of my mother who was diagnosed with Stage IV breast cancer almost four years ago. It's something that I should have done before. The year that she was diagnosed, I was going through a divorce. I was barely able to take care of myself or my two dogs at that time. Her cancer had already spread to her bones when she was diagnosed. She is in pain all the time and on large amounts of morphine. The doctor just gave her muscle relaxants and now she sleeps even more. My problems seem minimal compared to some of these stories. It's tough, though. I don't know anyone in this area outside of the cancer clinic. The only free time that I get to myself is running errands or the occasional aerobics class. I have a younger sister who lives outside of the state. When she visits, she acts like she's on vacation from her life. When she visited at christmas time, she didn't cook once, and only cleaned up the kitchen once. She's scheduled to come visit for another week a few weeks from now. I'm hoping to get some time off from mom, but I'm not sure if it's plausible. I go through such a range of emotions from day to day and I worry that i'm doing more harm than good. Mom was a lot more independent and mobile when I got here. Now, she can barely walk to the bathroom. I just don't know.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

If you know your sister is coming, let her know in advance that you are tired both physically and emotionally. Plan to take a few day away whether it's day trip or over night. You need that time. Also, is hospice involved? If so, have them come while your sister is there. You will be a better caregiver if you take care of yourself. As for the care you are giving, I'm sure you are doing it well. These final stages are tough to watch. Just do the best you can. Fay

cabbee's picture
cabbee
Posts: 10
Joined: Jan 2010

I am very angry at my husband and I know I should not be-He was recently diagnosed with lung cancer,yet to start treatment, and I know he is trying not to smoke so much , but when I see him with a cigarette it makes me crazy;I am scared and angry that I will be left behind and i cry almost every day-i am recently retired and most of my friends still work and have fallen out of touch with them,so right now pretty isolated;any suggestions would be appreciated, thanks.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

I am very sorry that you are going through this. Of course you are angry and scared. Those first few weeks after a diagnosis is really hard. The future is such an unknown and your life has taken a dramatic turn. Cancer is scary. Having said that, I need to add that new treatments are happening every day. Many people are living for many years with cancer. We have a lot more survivors than we did just a few years ago. I can understand to a large degree what you are going through. I had also only been retired for a short time when my husband was diagnosed with stage 4 colon cancer. The primary thing I remember during those early days was the phrase, "but we're supposed to grow old together," running through my head. After the first recurrence which actually hit us harder than the original diagnosis we came up with a plan. We were going to consider treatment as buying time. He was going to buy as much time as possible, and we were going to make as many memories as possible while we had that time. I don't know what your husband's prognosis is, but I do know the fear of being left alone. Cancer changes your life no matter what the prognosis. You realize that you are mortal and that your loved one is mortal. You mourn the life that was and the one you had planned. Anger is the first stage of the mourning process. I don't know if any of this helps. Sometimes just knowing that others have and are going through similar situations helps. You are not alone. Most here have felt many of the same things you are feeling. Take care, Fay

cabbee's picture
cabbee
Posts: 10
Joined: Jan 2010

Thankyou for the kind words-life has been a roller coaster ride since October;We will see the thoracic surgeon tomorrow and oncologist on Monday and maybe get some direction;my husband still doesn't believe that it is really cancer and thinks they will find they made a mistake ;he is probably not a good candidate for surgery because of emphysema, but we will
see what the surgeon says-thanks again for your support,and that is a great dog you have there.

Cindy

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

The dog is Moose. I bought him as a birthday present for my husband a little over a year ago. He is our 4th lab. He's 18 months old and is really good company. He still thinks he's a lap dog, too. I don't know what I would do without him.
Fay

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Cindy and Fay,
I enjoyed your posts. Just knowing you are both going through the same caregivers problems as i am! I have a chocolate lab. His name is chocolate, and he is going to be 8. He is a doll. Big goof ball, and still loves to sit on our laps!! Labs are the best. Moose is a great name.

Anyway....I am a caregiver for my dad, Ray, 71 survived esophageal cancer 11/08. Now a year later he has mets to his liver. He spent 8 days in the hospital week before christmas, with a blocked bile duct. He was jaundice, dehydrated, and anemic. Fought me for days about needing to be in a private room. Was ready to totally give up. Begging me to let him go. The shared rooms and semi private rooms are bad. It was rough. Prayers were answered though, finally got him into a private room after 3 days and nights of hell. Dad did a complete turn around in the private room. He had to have a stent put in his esophagus to open it up more due to scar tissue, had to have stent put in blocked bile duct. He is supposed to start chemo for the mets to the liver within the next 3 weeks. Right now he is recovering from the stent procedures, is tired and weak. He has lost about 30 lbs this past year. We have to get him "beefed" up for the chemo treatments.

Oh!!! did I forget to mention my brother, who lives in Nj and tries to come see us at least once a year? once he heard of dad's dx he ran and hid his head in the sand. When dad said he was ready to give up and wanted to come home to die, my brother said he refuses to come see dad. He will come after he has dyed. What is wrong with this picture? And....my mom...god bless her. They will be married 51 years 1/24. She is not well herself. She is a diabetic, has a heart condition, nauropathy, etc.... She does her best. Mom and dad do get on eachothers nerves, that is for sure. We have started a family journal, which we all write in. This has proved to be very helpful.

Oh!!!again...I am married 17 years and have one daughter, 9 years old. My husband and daughter tend to feel left out a lot of the time. What about us? Whats for dinner? Where is my laundry? How come the house is messy? Did you feed the animals? UGH!!!! Give me a friggin break you guys! Y'all know how to do all of these things.....do them!!

Ok...I am done for now. Thanks for listening!! Keep in touch.
Tina

jooliep
Posts: 2
Joined: Jan 2010

My Sam has been an invaluable source of comfort since my husband died in April, and even more so since I have been diagnosed with cancer myself. Some mornings, he is the only reason I get up. And if I nap too long, he takes it upon himself to make sure I am still breathing. Dogs are such a wonderful gift from God!

cabbee's picture
cabbee
Posts: 10
Joined: Jan 2010

Moose-Great name for a dog! Pets are a great help,mine probably think I have lost it,I am crying so much when noone else is around;
We have appointment with Oncology today and i am so scared and nervous,bu tired of waiting for this treatment to start,so guess I have to suck it up and deal with it.
Thanks again fot the support.
These are my 2 angels plus we have the cat who is in charge of every body-they bring a whole new dimension to our lives

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

We got Moose on a trip to Montana so the name seemed fitting. We knew then that my husband's time was limited. Some thought we were crazy to add another dog to the mix. We already had an aging basset hound. Somehow I just knew it was the right thing. My husband loved labs and he and Moose had a lot of "guy time" as my husband called there times sitting together. Our basset hound died the week before my husband. What a blessing Moose has been! We also have a cat. He thinks he is in charge as well. It is amazing how much comfort animals bring to our lives. Hope your appointment goes well. Fay

cabbee's picture
cabbee
Posts: 10
Joined: Jan 2010

Well,we saw the Oncologist ,he was straight forward that this is 3b,will need radiation and chemo,and some times seeds are spread that cannot be picked up on scan,but they will try to do the best they can. This morning my husband announced he is not going to do any more-I am so angry and sad,I don't know what to do anymore,just cry.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

I am so sorry that you are going through this. Give your husband some time to process what the oncologist said. He may rethink his decision. I always told my husband that it was his body and his decision. He chose to fight until the very end. There were days, though, when he talked about giving up. Usually those were days when he hadn't really taken time to think or when he had other things going on in his life. I think his knowing that I would accept whatever his choice was, helped him fight on. He knew that when he had had enough that he could quit. We talked a lot and cried a lot together. Just keep the lines of communication open, encourage him to explain why he wants to give up. My guess is that he is sick and tired of being sick and tired. Understandable in our heads, but not in our hearts. My husband often expressed that he didn't want to put me through any more. I let him know that that wasn't an excuse I would accept. I was strong enough to stay by his side as long as he wanted to fight. Take care, Fay

panks
Posts: 36
Joined: Feb 2010

I know what you are feeling. My husband got pheumonia in Dec 09. Five days later we were in ccu and he was on a ventilator fighting for his life. Found out he had stage 4 lung cancer with mets to the brain and kidney. It is so hard to accept that we will not be sitting on our front porch when we are 80 like we have always talked about.Anyway I am off track of why I was responding to you, Forgive him for getting cancer and forgive him when he smokes(as my husbands Dr. says what is it going to hurt the damage is already done) and forgive him for the mean things that he will say to you in the days to come. I think we have to forgive them for all this stuff because I really dont think they can forgive themselves for putting the one they love the most in the world through this horrible thing called cancer. Trying so hard to come to some kind of terms with all the new emotions, so I can make the rest of his life as peaceful as possible. I'm praying for all of us.
Tracy

khoward
Posts: 1
Joined: Jan 2010

My soulmate, my husband was diagnosed 1/22/2008 with stage IV colon cancer-spread to liver and lungs. He is 58. At 50 he got his colonostomy and was told come back in 10 years. His parents (still alive and kicking at 88) never had cancer, he never smoked, didn't drink, worked out everyday and ate healthy so wasn't considered high risk. In December of 07 he noticed that his side would hurt after jogging a mile or so. Went to doc and that's when they found it. Chemo isn't working anymore and now he is under hospice care. I have never had any friends-we spent all our time together, went everywhere together and we met working together. We have never felt comfortable when the other wasn't around. I have some family but they have their own problems. My husbands family is a mess. Nobody know what to say and neither do I. I am finding it very hard to watch him die. He had such dreams. We have 2 young grandchildren and his dream was to take them hiking the grand canyon, his favorite place. I promised him that I would do it. He wanted to do good things for people and that is what he did and still tries to do. We are religious and attend church at least 3x a week (Roger can't go anymore) but I just have a question that I haven't the nerve to ask our Pastor, why does God want to cause a good man so much pain and grief before he takes him home? Roger know there is a better place for him so he is begging God to take him but so far His answer is no, why?

santafe2323
Posts: 7
Joined: Jan 2010

I can relate and until my mother prayed the rosary and asked the Mary for help, she remained in pain and resentment. My mother received last rights about two weeks before her passing. As her caregiver, I knew that was what she needed but on her terms. When the appointment was made for the priest to come, she was satisfied and seemed prepared. When my sister tried to move the appointment up sooner concerned that her health was turning pooper, she was upset and would not allow anything to be rescheduled. At the appointment she dressed and readied herself for that private meeting. Afterwards you could see the contentment. Five days before she died, she started having horrible bed sores. As I called hospice in to help make her feel better she asked me " Am I dying?" Mom, I do not know. I'm just trying to make you feel better."

You know that comment was so telling and her frustrations were so visible then. I started telling her I was loving her with every action. I wasn't making her better. In her eyes I was KEEPING her here. She became mad at me, but hospice care stepped up the medicine for pain and management (she would not accept pain meds at their appropriate levels until after the bedsores started). Finally, she started to decline. I layed down on the bed next to her's and slept briefly at 2AM waking to check her status. At 6 AM I woke and asked her if she wanted anything. I could hear her breathing. I asked one more time if she really did not want any oxygen. I told her I hope the meds are helping and I loved her. And it was ok if it is time for you to go, I'll be fine. And she took her last breath.

I don't know if anything in this helps you. But for me and my mother... I needed to reasure her that her baby daughter would be ok. She needed to make sure her relationship with the God was right. We asked Mary for a bit of help. And I kissed her goodbye.

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

After my father died of cancer, I went to a few sessions of pastoral counseling to help me stop crying. The counselor recommended a little book called Good Grief, which is available at most Christian book stores. It might help a little as you struggle to put things in perspective. Do talk with your pastor, though, or perhaps find a prayer partner in your church. Fully embrace your church family, and let those good people help you through this terrible time.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

I can understand where you are coming from. My husband was diagnosed with stage 4 colon cancer on our 36th anniversary. He was 57. He had had two colonoscopies - one three years earlier and one just months before the one that found his cancer. We were both retired and had many plans. As our pastor said, "If you want to hear God laugh, tell him what your plans are." He also said that being mad at God was a sure sign of faith. The first few days after the diagnosis the phrase "We're not going to grow old together," kept running through my head. My husband chose to fight to buy time and made it for a little over 6 years. What a blessing those six years were! Luckily, I belong to a church where questions are encouraged. A book both my husband and I found helpful was When Bad Things Happen to Good People. Plus, we often asked our church family to support us with prayer. During the hardest times, we felt those prayers. Since Doug's death, the support from family, friends, and our church family has been wonderful. I still hurt and cry regularly and that's ok. Grieving and surviving is hard work. I take it a day, hour, or minute at a time. It is hard to watch a loved one die. When my husband got to the point where he couldn't get out of bed, I prayed for a quick and peaceful death. I told him it was ok to go, that I loved him and that I would be alright. Our sons and friends promised him that they would watch over me. Those were the hardest days of my life. If you can't talk to your pastor find someone else to talk to. Hospice has chaplains and counselors. Please find the support you need. Come here often and talk to the many of us who have stood in shoes very much like yours. My prayers are with you. Fay

coosa123
Posts: 2
Joined: Jan 2010

Hi, I am the caregiver of my great Aunt who has alzhemiers and my Mother has lung cancer for the second time. This all started in May of 08 we all moved to Fl from Ga. After being down here for 2 monthes my Mother had to have a triple bypass. When she was being released to come home they found the first spot on her right upper lobe and wanted to do surgery but she could not at that time because of everything with the bypass. So her doctors followed it for 6 monthed and told her it was starting to grow. That is when she told them to do the operation. They took out her upper right lobe. She was doing ok after the surgery. than they pulled out the last tube which had already started growing to her and she has had pain with that ever since. Well while all of this with my Mother is going on my Aunt is greating worse with the alzhemiers. She is starting to hit on my Mother and just becomes more than I can handle so we have had to place her in a nursing home than had to move her because of them hurting her with all of this I feel very guilty for not being able to do more for her. After my Mothers surgery for the lung cancer she went in for her 3 month pet scan and that is when they found the small cell lung cancer. She is now having chemo and seems to be doing ok. In the middle of all this we no longer have my Aunts money to help pay the bills that are in her name and my Mothers and I have not be able to find a job plus I have my own health issues I suffer from PTSD and fibromyalgia. Which I have a court hearing for my disablities in November of 2010. Thanks for listening and if you have any ideas I welcome them. I really do not want to lose our home but I don't know where to turn and I hate what it would do to my Mother. She has enough to deal with just with the cancer. But I THANK GOD FOR EVERYTHING GOOD AND BAD BECAUSE HE IS MY SALVATION HE PAID THAT DEBT FOR ME ON CALVERY.

ruthelizabeth
Posts: 146
Joined: May 2009

Check with someone about the homestead act. No, not the one that concerns your property taxes. There is one that protects a house from seizure (I think) if the owner goes into a nursing home, etc. I found out about that years ago when my mom was in a nursing home. I don't know exactly who to tell you to ask, but you do need to check it out.

Hope that helps a little.

AlexMother
Posts: 6
Joined: Sep 2009

My Son at 21 was diagnosed 1 yr ago with metastatic papillary carcinoma, thyroid based, The worst day of my life was being told my son had cancer. My heart broke it felt like I couldn't breath and then the ENT says this is the cancer to have if you have to have it. I HATE that saying regarding Thyroid cancer. It gives you a false sense of hope. ENT tells us surgery, Radical modified neck dissection, then RAI I-131 and he will be cured. Now 1 year later 2 Radical modified neck dissections, one RAI treatment that didn't work and still having cancer and being told there is no cure for my son we just need to get the desease under control. I need to say the 2nd surgery and this next treatment is being done at the UWMC in seatle (so much better tx) Iam so tired and frustrated I try to hold it together for my kids and my husband they are great but I have become the emotional punching bag for my son. I don't blame it but sometimes it just hurts my feelings. Then I feel guilty for thinking about myself in all this. I can not imagine what or how I would feel if it were me. but, as a mom I wish it were in me and not my son. All I want to do is fix his pain, cancer, and emotions. I find myself only living to research options in case this next RAI treatment doesn't work. Living for Dr. appointments and taking care of all my son needs. I would never change my being there and helping him but I know it is consumming me where I feel guilty if I have a good happy day...

tigrita
Posts: 6
Joined: Feb 2010

I am not a primary care giver, but I am a concerned daughter. My father is still capable of taking care of himself, retired, and he lives with my mother who does what she can for him. The problem is, he's been an angry, bitter, tyranical man his whole life (or at least my whole life that I can remember), and his health turning for the worse in the past 5 years has not helped any.

He has had several different health problems in the past 5 years, prior to that he was strong as an ox, very independent. The cancer was diagnosed last year, but he refuses treatment, and even refuses any investigation of new symptoms. He has some good reasons for refusing surgical treatment, he is a complicated case, though the doctors disagree with him and recomend that he have the surgery. Now there are new symptoms and an inconclusive CT that could indicate that the cancer has spread, or at the very least that there is a new health problem going on and he will not even have further tests to see what it is.

If anyone questions about his health he becomes hostile and shuts down. We have no choice but to watch him choose to do nothing about potentially curable health problems. He is making it damn hard to care about him, but somehow, we still care and beyond that, we feel guilty that there must be something we can do for him before it is too late. But it all comes down to his own attitude and choices. He doesn't believe in counseling, he won't talk to anyone; doctors, family, and certainly not a shrink about what is going on with him. I'm so distracted by worrying about him sitting at home with blood coming out of places it shouldn't, and him doing nothing about it.

I have no way to know if he has another year, or just another week, and sometimes I wish for the worst just to have it all over with, and let him live and die with his own stubborn chioce of denial. What kind of person does that make me? My mom is at her wit's end trying to convince him to get treatment, which makes her enemy #1 (which is how he's treated her anyway for most of their marriage). I don't know why she bothers, because if he gets better she'll have to deal with his tyranical attitude longer, but she wants him to recover in spite of that. I feel like it is so selfish of him to put the whole family through this, especially mom, not knowing what is happening to him (there are a few bad signs we know about and I'm sure a lot more he refuses talk about), and what to expect. But he's the one with cancer, we should respect him and let him do things his way, how can I be angry at someone who has cancer for being selfish, when they're the one physically suffering for it?

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

A friend's grandfather spent his life controlling people, and he became so belligerent in his old age that he was hardly on speaking terms with other family members. But as his health failed, he really took to a private nurse – a local lady with some low level nursing experience who needed the money, and was sufficiently detached so that his rudeness didn’t get to her. Can your parents afford a caregiver? I recently interviewed a wonderful woman who is happy with $14/hour, with minimum 6 hour shifts. This would really help your mother (if only to deflect bad juju), because the biological end of things is likely to get worse before it gets better. Having someone experienced in the house would be the next best thing to hospice.

I’ve seen a lot in my last year as a caregiver, and I must say, I respect your father’s decision. If you think this is hard on you and your mother, imagine dragging it out for a year or two with treatments that are often worse than the disease. Don’t get me wrong – I also support every last cancer victim who chooses to fight – but choosing not to fight a battle you can’t win is good common sense.

Ask him to sign a release of information allowing you access to his oncology reports. Maybe if you promise never to bring it up again, he’ll sign it and you can get the information you need to make appropriate plans. Do plan on being there for your mother, no matter what. Sometimes dysfunctional relationships are the hardest ones to lose.

tigrita
Posts: 6
Joined: Feb 2010

Thank you for the reply and the good advice. We do have a long time family friend who is a nurse who helps out a lot, and he loves her, since she can always have a cheerful attitude and deal with just the superficial stuff rather than the nitty gritty, so he doesn't take anything out on her. It sounds like they want to run away together through fields of flowers the way he talks about her. I know she will be the one helping with his care as he deteriorates and that will be a load off everyone. I'm glad of their positive relationship for those reasons, but it also hurts that he can't be positive with anyone else who only want the best for him and have put up with his crap all his life and are still hanging in there with him despite it all.

I agree about supporting his decision to refuse treatment for the primary cancer. Especially when it was an informed decision. But now he refuses to check out other symptoms that may be minor treatable things that may be cured and allow him more time in his current fairly good quality of life; or they could kill him in weeks if not treated; or they could be metastasis, which is information that would be good to know; we just don't know. He's refusing tests to make informed decisions. That is not a decisoin, that is denial. I'd hate to see him die of a treatable lung condition when he could still have another year or more of good quality life, and I'll be racked with guilt if that happens, thinking there is something I could have said to convince him to go to the doctor. I'm working on letting go of that mentality, but it is really dificult.

I do want to be there for my mom. She is very stoic about the whole thing, all business, all black and white. She's very detatched emotionally, she has to be to have lived with him for all these years. She wants the best for everyone, but she doesn't show it with an emotional bent; just "this is what is right". All the conversations are about him, and she's always "just fine". I know it will affect her though, whether she shows it or not, and I will do what I can to be there for her. It is just hard to see how to do it, when she doesn't really respond to anything emotionally right now. I wish they'd both see a therapist, I sure as heck have been. But they don't put stock in that kind of thing. I guess all I can do is be available, just be there in whatever capacity they are willing and able to share with me.

Thank you again for the support.

solomeo2
Posts: 1
Joined: Feb 2010

Hello - I don't know where to begin. My sister called me in November to tell me she has been diagnosed with anal skin cancer. The cancer stage 3. She is having the last day of radiation today. She has been through 6 weeks of radiation&chemo.

My sister lives in NV and I live in CA. My sister is single, age 57 with no spouse/boyfriend for support. Her son (age 31)lives with her - he pretty much lives off of mom, only getting a job when mom threatens him. She went on leave from job(no pay)due to the severe pain and loss of bowel movement. No income no savings to help get through this.

I am frantic trying to figure out how she can get some financial support. I am financially broke due to the economy and live in a different state. I have no room to move her into my house. I cannot take care of her because I need to work to support myself. I am single with no financial support of a spouse. I suggested that she file for Social Security asap. She has not filed because she thought she would breeze through treatments then return to work (good as new).

There is a Cancer Society in her town. They have helped some and I am grateful. I talked with them in the very beginning... please call my sister and help her with paperwork,etc. They don't seem to advise/help her in the steps she needs to take to get financial aid.
They said they don't go into that area - only help with cancer related issues.

Can anyone out there tell me what she can do to get some financial aid so she can pay the rent and eat? Is there a program that has caregiver help? Is there a carehome she can move into for round the clock care?

Thanks for letting me vent... any suggestions? need help.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

I think social security is her best bet along with some tough love with her son. She might also check into social services. She might be eligible for food stamps, etc. Fay

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network