Hurting as a caregiver
I just feel like I am not a good caretaker, a good daughter. It has been stressed to us so many times that my mom needs to maintain a certain weight, but due to the location of the tumor and radiation, it is extremely difficult for her to swollow anything. I stared off encouraging her to eat really gently, literally begging sometimes for her to eat. And as embarassed as I am to admit, gentle can only go so far. After a while it turned into an argument, which of course I still lost. But now its just getting to the point where it feels like just being in her presence makes her upset. Anything I say is wrong, things I do or don't do are wrong. It's like she doesn't even want me around her. We don't have anything to talk about because she just gets upset, even if I ask her if she has a taste for some soup. I no longer feel like a daughter, I'm more of a chauffer. This just really hurts. I can't imagine what she feels like and how difficult this is on her, and I feel guilty for even feeling the emotions I'm feeling. Has anyone gone through this before? Or am I really as horrible as I feel?
Comments
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Hurting caregiver
Hi and welcome to the discussion boards. First of all don't beat yourself up as a caregiver. Your just like everyone else doing the best they can. And if you were not a good daughter you would not be helping your mother. When we are in pain and fighting cancer we sometimes take all or our stress, pain and frustration out on those that love us. And its usually the caregivers as they are always around. The language barrier is a big problem here. When we have cancer we really need to talk with others that are going through cancer. We need to know that our symptoms, pains ect are not just ours alone. We get support and ideas from other cancer patients and it makes a big difference. I can understand why your mother is frustrated as she is alone even though you are there. Its not your fault! She really needs someone outside the family to talk too. Be it a psych or cancer support group but again the language barrier is a problem. I would call her oncologist and tell him or her about the eating problem and also ask about counseling for your mother. I doubt there are many caregivers that feel they have done everything right. Your doing the best you can and you are a good daughter. Most parents would be proud to have a daughter that has done so much. Best wishes Slickwilly0 -
you are not horrible
I think one of the hardest things about being a caregiver is that no matter how much we knock ourselves out for our loved ones, we always feel that we aren't doing enough, or we torture ourselves worrying about those times when we didn't do as perfect a job as we wanted to. Of course you have to try to convince your mother to eat, but as a caregiver, there will definately be times when your mother will be angry with you no matter what you do. Being a caregiver is a very tough job! You are a good daughter, because you are there every day, doing your best. If language is a barrier, I would guess that she's feeling pretty isolated. Helping her to realize she is not alone is a good way to ease her isolation. Your mother is going through a terrible time and so are you. You are bound to go through stages where you are closer and more loving, and other times it will be difficult to get along. Please don't blame yourself for this! You are only human after all, doing your best during tough times. I wish you all the best.0 -
i have been bothakbetty said:you are not horrible
I think one of the hardest things about being a caregiver is that no matter how much we knock ourselves out for our loved ones, we always feel that we aren't doing enough, or we torture ourselves worrying about those times when we didn't do as perfect a job as we wanted to. Of course you have to try to convince your mother to eat, but as a caregiver, there will definately be times when your mother will be angry with you no matter what you do. Being a caregiver is a very tough job! You are a good daughter, because you are there every day, doing your best. If language is a barrier, I would guess that she's feeling pretty isolated. Helping her to realize she is not alone is a good way to ease her isolation. Your mother is going through a terrible time and so are you. You are bound to go through stages where you are closer and more loving, and other times it will be difficult to get along. Please don't blame yourself for this! You are only human after all, doing your best during tough times. I wish you all the best.
I am so sorry for what you are going thru I agree with what has been said You may suggest her drinking Ensure or Boost, check with dr of course first. But these are what I gave my husband when he didnt eat and it helped his strength. I had cancer first and my husband helped me then he got cancer. When your on chemo and just feel bad you are depressed and its hard for caretakers to know when to say something or not to. I would say to my husband dont feel like talking today or lets just play cards or whatever. My son sometimes gets my temper throwed at him because I have to repeat somehtings for him to understand then I apologize, he understands and makes converstations short. Your mother may need counseling and again check with dr. on the drinks and nutrition. They also can give vitamins. But all depends on dr. and what he feels she needs. Hope and pray everything works for you and dont feel guilty like I said I have been both patient and caretaker and this awful disease is hard on everyone. God Bless
Prayers and Hugs
Sandy0 -
been there
my mom had cancer top of voicebox went through radiation erbitux also. it didnt work so she had surgery it is extremely hard to eat and swallow due to where there cancer is and the radiation. I have been where you are with the fighting and trying to help. My mom went from 160 to 80 lbs in less then 12 months, they say it is important for them to keep there health up and eat as much as possible all you can do is try dont fight over it, your mom knows what she has to do it is very hard for them to eat. Dont feel as though you are doing any wrong because your not she knows you love her and want her to get better. YOu are a good daughter and caretaker if she doesnt tell you its not because she doesnt feel it trust me, was very hard for mom to talk to me but i new she was happy for all that i did. She is going through alot of differenet emotions and will because she im sure feels terrible that you are taking time away form your own life to care for her they dont like to be treated as a baby. I was told that all the time i kept telling her she wasnt a baby and needed my help and that it was my turn to take care of her as she had taken care of me my whole life.
Try to just have a sweet conversation so you dont feel that being around her makes her uncomforatble try telling her your not going to argue or fight but that you really care and just want her to get better ask her nicely if she will just try to eat small easy things like yogurt, mashed potatoes(KFC) make her milkshakes, and tell her that will be the last time you ask you just want to be there to support. love, hold, cry and laugh with her, i bought mom some weight gainer from the nurtition store so she could add with her drinks /yogurt ice cream i thought that may help but she didnt like it and only used it a few times but i tried.
Keep your chin up and hope the treatments work and cancer doesnt come back becaues it will get worse, its okay if she dont eat her throat is reallll sore she will eat in time just remember that. if she gets to thin they will just have to use the peg tube, my mom never wanted that but she used it 90 percent.
god bless and stay strong you mom loves you its hard for you both as she doesnt want you seeing her like this and of course you dont want to see her like this. its just a bump in the road for whats ahead keep telling yourself.:)0 -
I hear what you are
I hear what you are experiencing.
My wife gets terrible canker like sores after Irinotecan. They fill her mouth and lips. She minimizes the pain when we go to her oncologist but screams in agony at home. Sometimes I feel so frustrated with her but she is afraid that if the dose is decreased the therapeutic level will be reduced as well. Sometimes she craves a certain food, like Salmon so I will drive to the restaurant and buy it only to have her take a few bites and leave it alone until it hast to be thrown away.
And I swear, if I hear one more suggestion from a well meaning person who questions why I have not taken her to a “Specialty clinic” from Sloan – Kettering to the “University of Baghdad” I will scream!
(Sorry, I didn’t mean to make this all about my current issue).
I think we can exhaust ourselves with trying to be the “perfect” caregiver when there is no such thing. All we can do is our best and that means getting the rest we need, setting boundaries, and as hard as it is, stepping back and let our loved one come to their own conclusion and make decisions and support them with whatever they decide to do. Sometimes I have to step away (on an emotional level) which allows me a new sense of energy.
I am rambling here-sorry.
PS You are a good caretaker.0 -
Been There
I still have days when I'll think, man, now I know this or that, why didn't I then. It has been 2 years since my Mom passed from ovarian. I took care of her for the last 18 months of her life. We went through her anger stage...I would ask how she was doing in a cheery voice and she would get upset. Then when I didn't ask, she told me that she thought I didn't care about her anymore. I tried not to take things personally, and after awhile it got to where I could detach a little. But it was hard. Mom cried a lot in the beginning. Then she cried over me because I got sick. I would always try to make a little joke or something goofy just to get her mind and my mind off the sickness. At times when I was especially feeling frustrated and starting to get angry I would stop myself and give her a kiss on the forehead. It broke the tension. You can't swear if you're kissing someone.
At first foods did not taste good to her. I tried everything. Then as the cancer spread it got harder for her to swallow. So we went to Boost and baby foods. I would buy milkshakes when I had the money, or give her ice cream. Then whatever she wanted I gave her. Six months after she passed while cleaning out the cupboards, I found a blender. I could have used that to make Mom whatever she wanted. I still to this day, get upset when I think of it. I thought I should have remembered we had it because I bought it for her.
I also think I could have done more for my Mom. But I think she knows I did the very best that I could. And she knew that I loved her, because I told her every chance I got. When she got to where she could not talk, I would sit on the couch next to her and she would snuggle up and give me hugs. So I know she was grateful for all that I tried to do.
Please try not to be too hard on yourself. Go day by day and do the best you can. Your Mom can see in your eyes how much you love her, even if you are having a bad day. You and your Mom will find a way to make things work. Just don't give up. Even if you don't say anything, just be there for her. You will work this out. Hugs, Cindy0 -
I just wanted to thankCindy54 said:Been There
I still have days when I'll think, man, now I know this or that, why didn't I then. It has been 2 years since my Mom passed from ovarian. I took care of her for the last 18 months of her life. We went through her anger stage...I would ask how she was doing in a cheery voice and she would get upset. Then when I didn't ask, she told me that she thought I didn't care about her anymore. I tried not to take things personally, and after awhile it got to where I could detach a little. But it was hard. Mom cried a lot in the beginning. Then she cried over me because I got sick. I would always try to make a little joke or something goofy just to get her mind and my mind off the sickness. At times when I was especially feeling frustrated and starting to get angry I would stop myself and give her a kiss on the forehead. It broke the tension. You can't swear if you're kissing someone.
At first foods did not taste good to her. I tried everything. Then as the cancer spread it got harder for her to swallow. So we went to Boost and baby foods. I would buy milkshakes when I had the money, or give her ice cream. Then whatever she wanted I gave her. Six months after she passed while cleaning out the cupboards, I found a blender. I could have used that to make Mom whatever she wanted. I still to this day, get upset when I think of it. I thought I should have remembered we had it because I bought it for her.
I also think I could have done more for my Mom. But I think she knows I did the very best that I could. And she knew that I loved her, because I told her every chance I got. When she got to where she could not talk, I would sit on the couch next to her and she would snuggle up and give me hugs. So I know she was grateful for all that I tried to do.
Please try not to be too hard on yourself. Go day by day and do the best you can. Your Mom can see in your eyes how much you love her, even if you are having a bad day. You and your Mom will find a way to make things work. Just don't give up. Even if you don't say anything, just be there for her. You will work this out. Hugs, Cindy
I just wanted to thank everyone for taking the time out of their day to reply to my post. I don't have a large support system, so hearing eveyrone talk about their story has lifted me up a little, I don't feel alone anymore. WE ONLY HAVE TOMORROW AND THURSDAY LEFT OF TREATMENT!!!!! I can't express how happy I am that she now can start the recovery process from all the treatments. I hug her and kiss her and tell her I love her all the time. And I know she loves me and somewhere deep inside she knows that I just want the best for her. I think today is a good day.......0 -
A head's upa9zalesna said:I just wanted to thank
I just wanted to thank everyone for taking the time out of their day to reply to my post. I don't have a large support system, so hearing eveyrone talk about their story has lifted me up a little, I don't feel alone anymore. WE ONLY HAVE TOMORROW AND THURSDAY LEFT OF TREATMENT!!!!! I can't express how happy I am that she now can start the recovery process from all the treatments. I hug her and kiss her and tell her I love her all the time. And I know she loves me and somewhere deep inside she knows that I just want the best for her. I think today is a good day.......
Congrats to you and mom for making it through treatments! And a hale and hearty shoutout to those who responded to your post and helped you to have a good day.
Beyond that, I would suggest that you realize that the end of treatment is NOT the end of recovery. That may sound obvious, but I, for one, did not know, for example, that radiation does not stop 'cooking' at the time it is no longer being administered. It continues to 'cook' for days and even weeks afterward, depending on dosage and number of treatments. Your mom is not very likely to start eating all of a sudden, just because the chemo and rads have ended, either.
As a tongue/neck cancer survivor (diagnosed August '05) I still have a PEG tube to supplement nutrition, and found humor in one of the respondent's stories about retrieving salmon from a restaurant only to have his wife take but a couple of bites: that STILL happens to my wife with respect to me
.
This is not meant to be discouraging, of course. Things WILL get better, as others have indicated. It just will not happen overnight.
I will add one more small piece of advice: To be a good caregiver, you must take good care of the giver! Be sure to make some time for yourself, beyond the work and school, for exercise, or a favorite hobby, SOMETHING that you enjoy doing for yourself. You will be pleasantly surprised at how it helps.
Best wishes!
Take care,
Joe0 -
Yes, I realize it will notsoccerfreaks said:A head's up
Congrats to you and mom for making it through treatments! And a hale and hearty shoutout to those who responded to your post and helped you to have a good day.
Beyond that, I would suggest that you realize that the end of treatment is NOT the end of recovery. That may sound obvious, but I, for one, did not know, for example, that radiation does not stop 'cooking' at the time it is no longer being administered. It continues to 'cook' for days and even weeks afterward, depending on dosage and number of treatments. Your mom is not very likely to start eating all of a sudden, just because the chemo and rads have ended, either.
As a tongue/neck cancer survivor (diagnosed August '05) I still have a PEG tube to supplement nutrition, and found humor in one of the respondent's stories about retrieving salmon from a restaurant only to have his wife take but a couple of bites: that STILL happens to my wife with respect to me.
This is not meant to be discouraging, of course. Things WILL get better, as others have indicated. It just will not happen overnight.
I will add one more small piece of advice: To be a good caregiver, you must take good care of the giver! Be sure to make some time for yourself, beyond the work and school, for exercise, or a favorite hobby, SOMETHING that you enjoy doing for yourself. You will be pleasantly surprised at how it helps.
Best wishes!
Take care,
Joe
Yes, I realize it will not end here! But al least there will be no more additional torment added to her body. I want to congratulate you on your recovery and hope that you continue with good health. Once again, thank you and everone else for all the advice and support that has been shown to me.0 -
Treatment is OVERa9zalesna said:Yes, I realize it will not
Yes, I realize it will not end here! But al least there will be no more additional torment added to her body. I want to congratulate you on your recovery and hope that you continue with good health. Once again, thank you and everone else for all the advice and support that has been shown to me.
We just finished all treatments today.0 -
Nurse Ratched
My husband called me Nurse Ratched yesterday. He hurt my feelings but I felt the need to be firm about getting 6 different meds into him and not taking 45 minutes to get it done. He gave in and took all the prescribed meds for that time of day without arguing with me. It's hard to convince an adult of what is best for them. NO, you are not a horrible caregiver and you shouldn't feel as though you are.0 -
One flew over...Arniezwife said:Nurse Ratched
My husband called me Nurse Ratched yesterday. He hurt my feelings but I felt the need to be firm about getting 6 different meds into him and not taking 45 minutes to get it done. He gave in and took all the prescribed meds for that time of day without arguing with me. It's hard to convince an adult of what is best for them. NO, you are not a horrible caregiver and you shouldn't feel as though you are.
I've called my wife the very same.
You are right. Hang in there, keep up the fight, and make sure that hub gets the stuff he needs.
He appreciates everything you are doing for him, believe me, and will have an even deeper respect and appreciation when all of this is behind me.
Take care,
Joe0 -
My caregivers - angels at my sidesoccerfreaks said:One flew over...
I've called my wife the very same.
You are right. Hang in there, keep up the fight, and make sure that hub gets the stuff he needs.
He appreciates everything you are doing for him, believe me, and will have an even deeper respect and appreciation when all of this is behind me.
Take care,
Joe
No, you are NOT a bad caregiver. I tried very hard not to take it out on my brother and sister-in-law - but at the very worst times, I would tell them to quit talking to me. Sometimes I thought if I was asked one more question ("Can I get you anything? No? Are you sure you don't want...") I would start screaming and never stop! But I also remember one day in ICU, when I thought I was dying, and my SIL just laid on the bed, held me and we wept together. Never said a word, but the love and faith and determination was there.
I wrote a journal for them as I started to recover from the treatments. I could only tell them that they, as much as my oncologist and radiologist, helped me survive.
Bless all of you.0 -
I know how you feel
First: I am so sorry your mom has cancer. I will include her in my prayers and meditation.
My BF was diagnosed with stomach cancer in Jan. and finished chemo/rads about 1 month ago. He will be having drastic stomach surgery (maybe complete removal) on May 18.
BF is a wonderful person but has never really been well--he had a number of minor health complaints before the cancer. We have been together 8 years and usually get along really well except for a few issues which we discuss and try to compromise on. He suffers from depression (as do I) and he has become more depressed, as anyone would, since the cancer treatment and having to face the surgery. Sometimes he just isn't nice to me because he is in pain or maybe scared and not saying it. Sometimes he seems distant and won't talk.
He used to do a lot of housework and errands and now he is too ill and I have to do most of it. Sometimes I find myself resenting his illness, and then I have a guilt burden to deal with on top of some serious financial worries right now. My feelings have been hurt this past 4 months, and we have had a few arguments in which both of us said things we did not mean.
It is the nature of serious illness to make people frightened, angry, and depressed. They naturally try to take it out on those closest to them, those who love them, because it seems safe to do so--that loving caretaker will never leave them. It requires a tremendous amount of patience and compassion to understand this. I am a naturally impatient person and have worked for years to develop patience (I am a teacher and you have to be patient!) All of this does not make it any easier for the caregiver. Sometimes life will be just awful and you will pray for escape. I find my therapist to be so helpful at these times--I just spoke to her yesterday. I also exercise (stress reducer) and try to meditate daily to calm myself.
The fact that you worry about not being a good daughter means that you ARE a good daughter or you would not be concerned.
It sounds like you are doing everything a good daughter should do. You can't help feeling angry and upset when she rejects you.
Have you tried talking to her about it? Underneath it all, she is probably grateful for the care you give her. Many people don't feel comfortable expressing their love and gratitude. Maybe she doesn't realize that she is hurting you.
You sound like a very good person--better than most people because you feel so horrible. A horrible person would not feel bad.
I feel so bad for you because I understand the struggle. It requires great courage to be a caregiver. It is so difficult to watch your loved one suffer and not be able to do anything to relieve the suffering. Many times I feel deficient in courage and I pray for help.
My friends have been there for me and my family members as well (although I am the only one who actually cares for BF) Have you opened up to your friends? No one can go through this alone.
Please realize that you are very good and doing all the right things.
I hope and pray that your mom gets better and that the two of you can talk at some point.
Take care,
Suzanne0 -
trouble eatinga9zalesna said:Treatment is OVER
We just finished all treatments today.
Hi,
My name is Michele. I am new to the board. My husband FINALLY got diagnosed in March with laryngeal cancer after going to our family doctor for 2 years complaining of an increasingly sore throat, a voice that got so raspy you could barely understand him, and a continual flow of phlem that prevented him from getting a good night's sleep for the last 6 months. My husband finally DEMANDED that he get a referral to a specialist.
When he had lost 57 pounds, they decided to put in a feeding tube. He uses that for about 3/4 of his nutrition. He can eat things like poached eggs, mashed potatoes, and some very, very steamed vegetables.
You may want to ask your doctor about a prescription called "throat coat". It is a mixture of lanocaine, mylanta,and benadryl that the pharmacist concocts. It numbs the throat and makes it easier to swallow.
Believe it or not, I actually read about it in a Caregiver book put out by the American Cancer Society that I borrowed from a local cancer center. No doctor ever suggested it and I don't know why. It really has helped my husband to eat more comfortably.
Please don't feel guilty. We are all doing the best we can for the person that we love. I know what you are going through. I feel guilty all the time that I could be doing a better job. But I am doing the best I know how, and he knows that. Your mother does, too.
Michele0 -
I call myself nurse ratchedArniezwife said:Nurse Ratched
My husband called me Nurse Ratched yesterday. He hurt my feelings but I felt the need to be firm about getting 6 different meds into him and not taking 45 minutes to get it done. He gave in and took all the prescribed meds for that time of day without arguing with me. It's hard to convince an adult of what is best for them. NO, you are not a horrible caregiver and you shouldn't feel as though you are.
First I'd like to say I can relate to all these posts. I had no idea being a caregiver was so difficult. It has always been my thought that if you where diagnosed with cancer you would make the best of each day you were given. No I see how difficult that is for the patient and the caregiver. My husband has been going through radiation and it completely wears him down. The nurses and therapists say it's a normal reaction. I on the other hand think he should be more alert, to enjoy the days he has. It is a constant struggle between the two of us. When I let myself give in to his symptoms I feel like I'm not doing enough for him and I feel like I have to do everything, not just household chores but dealing with the paperwork and phonecalls. Then I beat myself up because I think I am so mean. I should be more compassionate. We have a lot of support, my father was here last week and was a big help, but still I hate to bother my friends to help with the everyday tasks, they have their own lives. I feel like I should be able to handle it all and now I realize I can't. I miss my crazy normal life. I hate the pain medicine's that are robbing my husband of his life.0 -
Care Giving is like being a new Mom we are all clueless
All we can do is our best because none of us have a clue what we are doing. There is no manual that comes with this dreaded disease just alot of flack from our loving patients. There seems to be an endless supply of that.
Remember when you brought your first baby or pet home and you didn't have a clue what you were doing, that's the way I associate Care Giving. And I've been doing this since Aug 2008 and gave up my pre-nursing classes and home health care job to take care of my husband who sometimes would like me to run away and leave him alone.
But we are the few, the chosen ones, and what we do is wonderful. We shove food down them or pills or drag them to yet another specialist so we can have more time with them. For me it's my husband, for you it's your Mom, but in the end it all is tiring, overwhelming and just stinks.
Someday there is going to be a special place in Heaven for all the Care Givers, we get front row seats to everything. So pat yourself on the back and pamper yourself you remember your Mom loves and appreciates you even though the pain is to much for her to convey that.
God Bless
LH0 -
CARE GIVERSArniezwife said:Nurse Ratched
My husband called me Nurse Ratched yesterday. He hurt my feelings but I felt the need to be firm about getting 6 different meds into him and not taking 45 minutes to get it done. He gave in and took all the prescribed meds for that time of day without arguing with me. It's hard to convince an adult of what is best for them. NO, you are not a horrible caregiver and you shouldn't feel as though you are.
MY HUSBAND BITES MY HEAD OFF QUIT OFTEN OVER EATING i DONT LET UP ON HIM. HE WENT FROM 189POUNDS TO 166 SO FAR BUT I HAVE MaNAGeD TO gET HIM TO EAT 3 MEALS A DAY AND SnACKING ON ICE CREAM PUDDNG AND DRINKING ENSURE 4 TIMES A DAY He HAS GAINED 11 POUNDS BaCK SO FAR WE STILL HAVE 17 TREAMENTs OF RADIATION AND 3 CHEMO HOPEFUL TO KEEP HIM FROM LOSING ANY MORE SO I will be his beating bush for now he hurts my feelings more than anything0 -
Heschieheschie said:CARE GIVERS
MY HUSBAND BITES MY HEAD OFF QUIT OFTEN OVER EATING i DONT LET UP ON HIM. HE WENT FROM 189POUNDS TO 166 SO FAR BUT I HAVE MaNAGeD TO gET HIM TO EAT 3 MEALS A DAY AND SnACKING ON ICE CREAM PUDDNG AND DRINKING ENSURE 4 TIMES A DAY He HAS GAINED 11 POUNDS BaCK SO FAR WE STILL HAVE 17 TREAMENTs OF RADIATION AND 3 CHEMO HOPEFUL TO KEEP HIM FROM LOSING ANY MORE SO I will be his beating bush for now he hurts my feelings more than anything
You are the best thing that ever happened to your husband. I am sorry that he takes his frustration out on you. But we all know that we have to eat to rebuild our bodies. You have a real tough job but seem up to the challenge. You are a great caregiver Heschie. When you get through this you show your husband this letter and tell him you deserve a vacation. Slickwilly said so. Blessings0 -
trying times
I'm so sorry about your mother. My dad has stage 4 colon cancer. He was doing the same thing with the eating and now he is completely tpn. Which makes my life alot easier! But before this it got to a point where we had nothing to say to each other. Seems like everytime I went to give him his meds or just check on him if he was awake I was always trying to talk him into eating something. He would just keep telling me I didn't understand. It got to the point where we no longer had anything to say to each other, until I decided to sit down one day and think of all the things we used to talk about besides his eating, or cancer. Then the next time I went in there I started talking about deer, fishing, you name it! LOL And oh the remember when we, blah blah blah. And you know his color even got better and he started talking to me. He was to weak for a big smile but I could see in his eyes that for just a minute it was nice to be talked to as a person and not as the patient. It's still hard for me not to constantly nag him about what meds I want him to take, or that I think he should try to eat something but I learned if I want to enjoy him this is the sacrifice I had to make. This may not be the situation with your mom but I just wanted to let you know that as a caregiver myself I do understand and I am so sorry for the hurt you are going through.0
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