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Ed stopped chemo


adela

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Ed decided to stop chemo. He wants to go back to Seattle. We will fly out tomorrow. He is so weak.

It has been quite painful the last 4 days. My stepson has accused me of providing inadequate care for Ed. That Ed is not clean, not eating and depressed. That he must have a professinal home health care aide at all times. That I have ignored and isolated Ed from his children. This kid has only visited Ed once every 2 weeks for a 1/2 hour. I told him he could come and help out and do things for his father. He told me I am the primary caregiver and his wife I should do it all. I have home health aides for bathing, my son stays with Ed during the day and I take care of Ed at night. To top it off he says he will get social services, I called a senior help office. They calmed me down and asked me what I have done to help my husband. I have requested and gotten Home Health care: physical thearipist, speech thearipist,social worker and a bath aide. Also I have hired a care giver at various times. Ed has no desire to eat, Ed would not ask for a antidepressant until a week ago.

I bathe my husband, I walk him to the commode, I make him smoothies, I encourage him to eat. He is so afaird of choking he doesn't eat. He refused a feeding tube.

A home health aide can not fix his refusal to eat, refusal to take antidepressants or reduce the necrosis and brain tumors. My husband wants me to take care of him.

Community help me let go of this intense hurt and anger I feel.

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I am so very sorry that you have to experience the negative while you work so hard at the positive. I pray that God be with you and give you strength. You, your husband and family are in my prayers.

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When there is bad news, no matter what, most of us experience wouldas, shouldas, couldas. Get rid of them. We are human beings and we do the best we can. You love your husband and you are trying - no one can ask more.

Tell that jerk of a son if he can't pitch in and help, then keep his opinions to himself.

I am sorry Ed is doing poorly. I hope the trip north helps him.

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Don't ever question the care you are giving your husband. What you have done and continue to do for him is so very difficult. I watched my Mom care for my Dad while he was sick. It is the most unselfish act anyone could ever be ask to do. It is physically and emotionally exhausting. My Dad did not want anyone else caring for him. My Mom did it all. We did bring food and sit with Dad so she could get a break. Ask his son for some help so you can get a break once and awhile. He may have a new appreciation for you after he is responsible for the care for awhile. Hang in there.

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You are doing everything possible to care for your husband. You are doing a wonderful job and no one should take you to task for that. Perhaps his son is grieving about his father and that turns into anger that he takes out on you. If he cannot help, then I would try my best to ignore his comments and continue to do what you're doing now. I have the utmost respect for caregivers and consider them to be "survivors" just as much as the person fighting this awful disease. I will keep you in my prayers.

Joanie

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(((HUGS)))) It is so clear that you love your husband so dearly ad that you are doing the best that you can in every way.

I would like to take his son and shake some sense into him!

It is easy for us to say let it go, and so hard to put that in motion for yourself. I have adopted a few new 'mantras'

* I AM DOING THE BEST THAT I CAN

* WHAT YOU ARE SAYING IS NOT HELPFUL RIGHT NOW

* THIS IS ONLY TEMPORARY

I pray that your trip goes well, your husband is comfortable, that you find some peace and that his son realizes the mistakes he is making before it is too late.

Kim

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Adela, you are doing an excellent job. Unfortunately, it is common in second marriages like yours that the stepkids want to blame. We were working with a great couple where the husband had lc and his daughter kept needling the wife. It may be in their own frustration or guilt or depression that they do this. Try not to let it get to you. You are doing great. Don

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Don't second guess yourself. You have done nothing wrong. Everything you did was right. We do not take courses on how to be a caregiver. We just do what we feel is right.

Don't worry about his son. He is just a back seat driver as far as I am concerned.

You just know in your heart you did the best you can and I admire you for that.

Maryanne

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I am so very sorry that your Ed is not doing well right now. I am absolutely heartbroken that your stepson is being such a jerk right now and giving you a rough time. Being a caregiver is a very difficult task and anyone that has not walked a mile in the shoes of a caregiver should not throw any stones. Your stepson should be there helping you care for his father and should never expect you to be the one responsible for all his care. If I were you, I would continue doing things the way I have been and tell your stepson to but out. If he has nothing better to do than critize the people that are helping his dad, he should get a muzzle and wear it!!! I'm keeping you and Ed in my thoughts and prayers.

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(((Adela)))

Taking care of your husband is a full time job and don't you take any crap from anyone! My Mother took care of my Dad for 8mts and it was so hard on her.

I wouldn't wish this on anyone,the person with the Cancer is suffering and the person taking care of them is suffering just as much. Watching someone you love with this dreadful disease is the worse thing anyone should have to deal with. Cancer is a monster and I HATE IT! If anyone doesn't think your doing a good job tell them to shove-it :x Don't forget to take care of yourself!

Michele

Dad DX 04-01-05 NSCLC

Passed away 11-18-05 only 66 years old

I don't think I'll ever recover from lossing my Dad he was my best friend :cry::cry:

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Adela I am so sorry you have to experience this double pain. Not only the hardship of seeing the man you love suffering, but being unappreciated for all you are doing. And from the sounds of it, you are doing a lot, and you are doing all that can be expected of you, and all that can be done. In the end, all decisions in how to treat your husband are his, and all we can do is honor his wishes.

Try to let the words your stepson is saying roll off your back like water off a toad. He can never fully understand what it takes to be a caregiver. Until you are in the situation you can't imagine. People think they know, but they don't. It's like people thinking they know what its like to be blind because they closed their eyes for a minute. It just isn't the same.

Try to also understand that the fact that your stepson is hurting inside too. Empathy goes both ways. He is losing his father. He has frustration and such a profound sense of helplessness. He can't cure his dad. He can't take the pain away. And he probably can't bear to see him like that; which is why he doesn't come more often. Instead of facing the guilt he must be feeling he lashes out on you all that he can't do, and makes it all that he imagines you aren't doing.

You know in your heart that you are doing all in your power for your husband. You know, your husband knows, and all those who matter most to you know that you are caring for him with all your heart and all your abilities. You are doing great.

Try and forgive your stepson his tactless cruelty. I'm sure it comes from a dark place of pain, and not intentional evil. Forgive those who trespass against you, that God may forgive you your trespasses. You are both walking through life doing the best you can with each and every situation based on your own personal perspectives, fears, knowledge, and capabilities. If he is not dealing with this well it is because he does not know how to do better. Forgive him his ignorance. I do understand that forgiveness is difficult especially when someone is hurting you when you are already in pain. But let God help you with this.

I'll be praying for you.

I also want to wish you a wonderful trip filled with warm memories and shared loving moments. I hope this trip will also put some needed perspective between you and your stepson while giving your husband a much needed release. Enjoy each other, and have a safe and happy trip.

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I can understand your anger. I also understand that many of us deal with these trials in different ways. Maybe you stepson is just lashing out at you because he feels so impotent in this situation, and doesn't know who to be mad at. It doesn't make it right, but he is grieving, too.

I will pray for strength for you, and for a change in your stepson. The last thing you need is more stress and drama right now. I hope you can pull together for your husband's sake.

You know you are doing right by him. He knows it...God even knows it. Hopefully the boy will come around.

Lots of love to you!

:) Kelly

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Dear Adela, Oh man what I would give to have just ten minutes alone with that stepson! Every caregiver has to get through the "advice" from friends, relatives and buttinskis..even the ones that mean well can make you crazy. We all have our stories but yours is one of the meanest I've heard. You are doing a wonderful job because you are there everyday and you genuinely love Ed. That is all you need to know and that son of a gun needs to step up to the plate and help or put a sock in it! There, I feel better. Have a glorious, memorable trip.

Trish

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Adela, you have been doing evreything right, including inviting your stepson to help in the care. That shoulld have made him feel included, but unfortunately....

Anyway, I guess you are back in Seattle by now. I hope your husband is comfortable and that things are going more smoothly for you now.

Don M

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Adela -

I believe that caregivers truly do God's work...you are doing a wonderful job. Your stepson just doesn't get it...try and ingnore it. You know what you are doing. Your husband knows what you are doing. God knows what you are doing.

Prayers for peace of mind for you and comfort for Ed.

Holly

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Adela,

You and ED are in my prayers.

I know you are doing the very best you can, ignore idiots like that step-son.

You are doing one of the hardiest things anyone can do,I know because I helped my wife with her mother a few years back, she had SCLC. Now my wife is supporting me.

You know ED and I are the ones with the Cancer but you and my wife are the ones in my opinion dealing with more than I am. Sometimes I feel like a burden to her, of course she tells me I'm not and reminds me just how much she loves me. Not sure what point I'm trying to get to here, just keep doing what you are and it will be OK.

Take care, will be thinking of you.

Warren

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Thanks everyone. We are doing ok. Many friends and family are stopping by. Ed thanks me everyday he says he is in heaven and I made it possible. It has taken me a full week to be able to put the stepson comments to the back burner.

Ed is happy and eating a little more. He had a conversation with the Lord and that was quite amazing to share with Ed.

Thanks again everyone.

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