Cancer Survivors Network - Hurting as a caregiver - Comments

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username32 — Sat, 10 Oct 2009 06:23:50 -0400

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Hey Pasgirl (thanks for your

AnneS — Sun, 14 Jun 2009 16:15:51 -0400

Hey Pasgirl (thanks for your PM, sent you one back),

I can totally relate to the constant nagging: eat, take meds, drink, eat, take meds, drink, nag nag nag nag. No normal conversations anymore. Everything is about this disease. So, yes it is a relief to start on the TPN, cos at least THAT is out of the way:)

Talk to you soon, Anne

wise

soccerfreaks — Sat, 13 Jun 2009 13:25:30 -0400

A very fine observation, pasgirl, and a reason that people come to sites like this as survivors: surprisingly, they intuit, I think, that they need to be around other survivors to talk about things OTHER THAN CANCER!

It is truly amazing, if you hang out in the CSN Chat Room for any length of time, to discover that the folks in there, survivors AND caregivers, talk about food, talk about kids and grandkids, talk about sex, talk about ANYTHING but cancer, given the chance!

Of course, as these boards bear out, there is always time for cancer, for advice, for encouragement, for sympathy, for empathy.

But you are so right on: talking about things other than cancer is such welcome relief, whichever side of the survivor/caregiver coin we are on.

Best wishes to you and dad. He is fortunate to have such a wise and loving person on his side and by his side.

Take care,

Joe

trying times

pasgirl — Sat, 13 Jun 2009 00:23:48 -0400

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.

Heschie

slickwilly — Thu, 11 Jun 2009 22:00:30 -0400

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. Blessings

CARE GIVERS

heschie — Thu, 11 Jun 2009 21:12:58 -0400

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

Care Giving is like being a new Mom we are all clueless

longingforhope — Tue, 02 Jun 2009 19:42:34 -0400

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

I call myself nurse ratched

tdm1991 — Tue, 02 Jun 2009 05:01:45 -0400

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.

trouble eating

mizray — Mon, 18 May 2009 21:38:57 -0400

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.

Michele

I know how you feel

suzjazz — Tue, 05 May 2009 09:08:11 -0400

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,
Suzanne

My caregivers - angels at my side

RoseEm — Sun, 03 May 2009 09:32:15 -0400

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.

One flew over...

soccerfreaks — Thu, 30 Apr 2009 05:25:33 -0400

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

Nurse Ratched

Arniezwife — Thu, 30 Apr 2009 00:46:55 -0400

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.

Treatment is OVER

a9zalesna — Thu, 23 Apr 2009 17:24:41 -0400

We just finished all treatments today.

Yes, I realize it will not

a9zalesna — Wed, 22 Apr 2009 01:55:32 -0400

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.

Hurting as a caregiver

a9zalesna — Mon, 20 Apr 2009 01:24:10 -0400

My mom was diagnosed with cancer (larynx) in early February. We are now at the last tree days of radiation, chemo, and herbatux, and needless to say it has been the hardest and most trying period of our life. I am normally a very strong individual, I have gone through a lot in my life. I thought I would be able to handle this better than I am. I do to school, have a full time extremely stressful job, and while we managed to have my sister come from another country to take care of her while Im not home, I am still the one responsible for taking my mom to all the doctors visits, all appointments, all conferences, mainly due to a my moms language barrier. But that's not what is stressing me our and literally making my heart hurt.