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just venting


hawkeye

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I just feel so lost. I don't know what to do anymore. mary is on her 3rd chemo drug. This one messes her up. The first few days after chemo she is so lethargic and has no hunger.She sleeps till 3 in the afternoon.I don't work now. My life is taking care of Mary.The several days after chemo she talks to all who call kindly. I seem to be in a different catagory though. I'm sure its the chemo and the pain meds. But its hard for me. Her kids don't help although I don't think they truly understand. Now I have to fix our daughter-in-laws car. I already clean the house, take care of the animals, do laundry, cook all the meals and take care of the yard. I'm sure there's morre but I can't think anymore. I just needed to vent so please excuse me.

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Hawkeye

I heard from you a few nights ago and I can both see and hear the frustration and pain you are feeling in the things you write about. I think you are like many of caregivers: annoyed, mad and feeling helpless at these times. Please vent like you told me to do!

My thoughts are with both you and Mary. No need to be excused. We have all felt this way. You are not alone.

I was given great insight on the life of the roles we find ourselves in-and not by choice-in responses to my post.

Keep being the good man I know you are

Will

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Hawk Trust me I know exactly where you are coming from. I went thru the same thing for a while. It is normal top be overwhelmed by all of this. and keep in mind that things are worse for MAry I am sure right now though mentallly. Not your fault but the cancers fault. I know it is hard but cherish the time you get to have together and make the most of it.

As for the sleeping, You amy want to look into getting medications adjusted. Antio naseau meds and of course pain killers are causing a lot of the fatigue.

Vent away, cause if ya don't you will explode. I tis perfectly acceptable to do that here. we all have and we all do and we all will vent here. and when you do need to vent you don't have to apologize. We understand completely..

Prayers and strength!

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When John was on taxotere he also had a lot of body ache pain. We found that the answer (to most of it) was as simple as drinking a lot of water. Every chemo is different and for some reason if he drank a lot before, during and after taxotere it helped the pain.

About the other stuff, boy we've all been there. John always did so much for all our neighbors and friends and I became quite resentful when others didn't help him with shoveling, etc. when he was sick. Finally we just had to start saying no. Tell your daughter in law you can't fix the car-- you'd love to--but you can't. Life has changed and you need to start letting people know you can no longer do what you used to. One person can only do so much. As you said, they may not realize, so you need to learn the word no-- it was the best thing I did.

Hang in there.

Rochelle

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It DOES hurt when our loved ones can find kind words and patience for visitors or callers and then have a meltdown with us.

I think it takes so much effort that they just don't have anything left and they are comfortable that they know that we know that we are loved.

It still hurts.

It is an allocation of energy.

Snuggle up close to her and feel the love that is truly there.

Also, I am sure it is hard on our spouses to be so dependent on us and that may cause some underlying resentment, too.

Just touch and hug and snuggle ~ no words needed.

Many prayers and much understanding.

Pat

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First let me say how sorry I am that you and Mary are going through this.

My husband also did carbo/VP16, topotecan, and taxotere. He tolerated the first two treatment protocols really well. But the taxotere really kicked his butt.

As Pat said, "I am sure it is hard on our spouses to be so dependent on us and that may cause some underlying resentment." I found this to be true in my case.

While my husband was ill, many people said "Give me a call if you need anything." I think you should start taking people up on their offers. Ask for exactly what you need. Maybe a neighbor can help with the yard. Perhaps a friend can make a little more for dinner, and bring you meals that you can just throw in the microwave. There are usually people in our lives that want to help, but just don't know how.

As for doing favors, like fixing your DIL's car, "just say no." You do not have the physical or emotional energy to take on other people's tasks.

I think that most people are on their best behavior with "outsiders." Unfortunately, we don't give the same courtesy to our closest loved ones. But I know how much it must hurt, especially because of all the effort you're putting in to take of everything and keep her comfortable.

I wish I had the magic words to take away your pain (and Mary's). I will be keeping you both in my thoughts.

Peace.

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I've sure been where you are now, so I understand. I will repeat what Ry and others have said - as unnatural as it may be to you, as unconditioned as you are to it - you have to begin to say 'no'. You energies are being fully absorbed right at home. This is the first time in my life that I have made myself unavailable to take care of things for other people, and it was hard to stop, but essential. MC

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Lots of good advice here already. I just wanted to send you a ((hug)) and let you know that it's good to vent...let it out here where we all understand. Learn to say no, ask for help, and be gentle on yourself. It's so so hard, and you shouldn't have to go it alone.

We are here for you.

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I am so sorry for everything Mary and you are going through. I know the frustration of feeling helpless when your love one is so sick.

Taxotere is a tough Chemo but everyone goes through chemo their own way.

Your most important thing in life right now is taking care of her. You do not have to tend to other's needs as you seem to be doing everything yourself with no help.

I definetely would say sorry I just don't have the time, I hope you understand. If they don't... too bad.

Your are a wonderful husband to be doing all you can for her. I am sending prayers that she will soon feel better. I hope she does not have too many chemos left.

Are they checking her WBC (white blood counts)as Taxotere is tough on that. They had to give Joel Nueslasta shots after each treatment to help the count to come up. If her WBC are down that could make her very lathargic.(sp)

We are always here for you. Please keep us infomed on how she is doing and how you are coping.

Maryanne

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Hawkeye,

My heart breaks for you because I know how overwhelming some days feel. It is hard enough to manage your own responsibilities around the house much less pick up your spouse's duties too. You are going to have to be the one to define parameters for your life, so you can focus on Mary. It's all about Mary and her needs now. The new "normal" tends to change daily, and you have to tweak what you will and will not do for others, based on what is best for Mary. I was extremely protective of my husband and laid down the law early on about no phone calls between certain hours of the day and what we would or could not do outside of the home. You have to remain on "alert" to pick up on cues Mary sends and that's not always easy. It's also not easy to feel overwhelmed and hide it from your spouse. They are the last ones who need our venting, but it does happen on occasion, and instant apologies and assurances are necessary.

Unfortunately, it is pretty typical that the spouse becomes the scapegoat for much of the fear and anger that hits the patient. They so wish to live normally, as we all do, but see their world getting smaller and smaller by the day. My husband was never snappy with me, but did begin to retreat into his own little universe. It hurt, but I came to realize he wasn't intentionally doing this -- it was part of the process.

Feel free to vent here -- it's a great safety-valve to keep you going.

Best wishes,

Welthy

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Hawkeye - how do I know what are going through. My mom snaps at me for breathing the wrong way right now - well almost. Now she is starting to do it to my stepfather. I think it may make them feel in control or something when all the other stuff is out of their control. Try to grin and bear it - and I know that sounds easy since others have been telling me the same thing. Just know someone else is going through the very same things as you and feel better knowing that you should be so proud of all the things you do and that the loved one really knows that inside!

Best-

Marci

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Many thanks to all who responded.Lots of really great advise.This week is better so far and we are planning Turkey-day. 2 of Mary's sisters are coming with their husbands.We'll have about 12 people altogether. I will be cooking (a passion of mine) and they will spend time with Mary. She had a CT today and we see the onc next Wed.Our Daughter had a baby boy at 6:30 P.M. EST tonite so we are now very happy grandparents :D

Thank you all so very much 8)

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