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How do you know what to do?


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I have been reading all the updates and learning so much from everyone, that I thought it only fair to post what's happening with my Dad. Maybe it will mean something to someone else down the road.

Hard to believe that only 7 months ago I absolutely never thought about lung cancer. Never crossed my radar screen. Now my life is dominated by it. It is almost inconceivable how much Dad has endured in just 6-1/2 months. Lung cancer has taken a strong, independent, vibrant man and crushed him -- and it's not through with him yet. Every day I wonder what new torture it will bring.

Dad has almost stopped eating and drinking. He'll take a few bites or take a sip of liquid if someone insists, but not enough to keep him going. He sleeps most of the day and isn't fully lucid when he's awake. His muscles have deterioriated to where he can't hold his head up anymore. We have been grateful that he hasn't had any pain during the whole 6-1/2 months. Until today.

This morning Dad is having pain in his lower back, not a sharp pain but a dull throbbing pain. We don't know what it is. He has mets to the spine so it could be that. Or it could be his kidneys from the lack of fluid. Or it could be a kidney infection. Or it could be something we haven't even thought of. He's in a really small town in West Texas and there's no doctor there. To get him to a doctor would require a trip of at least 45 miles. And then we're afraid they'd want to hospitalize him, which he would hate, hate, hate.

Right now there's a great debate taking place among his four children and his wife about what to do next. One brother and I want to call hospice, but two brothers aren't ready to take that step. My stepmother is overwhelmed by the situation and she doesn't know what she wants to do. Dad isn't at a place where he can tell us. When he can talk, he just says he wants to be left alone so he can sleep.

This is so hard. Dad is miserable, and it tears me up to think what he's going through. Nothing about this has been easy, but this is devastating.

I'm not thinking clearly. We want to do the right thing for Dad, but we don't know what that is. Please help me! My head is spinning.

Pam

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I unfortunately don't have any suggestions for your situation, but wanted to say how very sorry I am that you and your family are going through this heartache.

I realize that there is no doctor in his small town, but has his radiation or medical oncologist been called regarding his back pain? They may have some suggestions or pain meds they can prescribe.

My thoughts are with you,

Heather

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Pam

I can hear the distress in your words. Maybe you can do this: Contact a home health care/visiting nurse organization. Medicare and most all insurance companies pay for this. He can then be assessed by a nurse who can then give you an indication of what his needs would be. She would be less apt to be emotional about her assessment. Also does your father have a living will? If so try to do what you can based on it--but I know that is not always possible. Sometimes you just have to go with what is in your hearts. YOur stepmother is probably torn. Anyway try the nurse organization.

My heart goes out to you and your family.

elaine

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Pam,

I am praying for you and your Dad. I am not really informed about hospice but I think it is not always a permanent thing. He could get the treatment he needs and then not need them. There are a whole bunch of people on here that know more about that.

I grew up in Grandview, MO and my parents moved to Buckner before they retired. Haven't been back in a few years but still have lots of relatives in Lee's Summit.

My prayers are with you.

Love and hugs,

Nancy

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Pamela I have been thinking about you and wondering how you and your dad are doing. I can't offer much advice other than to second what Cathy and Elaine have told you.

One suggestion I will make is that he should probably have his liver checked. I have seen on this board many people who have liver mets tho I am not sure what the symptoms are. Maybe someone else can enlighten you about that. One thing I do know is that many medications cause harm to the liver. Sense you have already mentioned the unreasonable amount of medication that your dad was on at one time I wouldn't rule that out as a possibility.

My heart goes out to you in your anguish. I know only too well what it is like to feel lost and alone trying to decide what is right and what isn't. At least you are fortunate enough to have others to help with those decisions.

I hope that somehow you will find what is best for your dad. I know it is not easy. It never is. I pray that the cause of his pain will be known soon and that it is treatable without making his other problems worse. God be with all of you. You are in my heart and prayers. Lillian

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I ditto what Heather says, maybe call the oncologist to see what he/she recommends and go from there? It is so hard to be in the situation you are in and there is no magic answer for you to know what is right.

I am sorry you are going through this :(

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Pam, sorry about your dad. He could have back pain because of the things you listed, and it might be because he is so immobile. I agree that a nurse or doctor should advise you on what to do next. He sounds like a hospice case to me, and we had good experience with them with my mother-in-law, my brother and a friend. Don

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Pam,

My Earl is under hospice care. It is NOT only for end of life care and you can choose to stop hospice at any time.

The most important thing is that your father is comfortable and the best thing that hospice does is make him comfortable.

They ordered all the medical equipment, they reviewed and ordered all his meds, a hospice nurse comes 2x a week and checks his vitals etc, a home health aide comes every day mon-fri and attends to Earls personal needs (bath, toothbrushing etc) and a social services person visits as needed and will meet with children and grandchildren.

Hospice care will relieve you and your family of some of the stress you have right now. You will have more time and peace of mind to spend with your Dad.

Hospice asks the patient some of the tough questions that you can not ask. They are on call 24/7 if you need them. Hospice is a good thing.

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Pam,

I wish I had some information for you. From what others have said, maybe Hospice is a good idea. As Ginny said, it is a lot of help for you and your family and not permanent. Once your father is stable and feeling better, you can stop Hospice from coming. Prayers for your dad and family...

I am originally from Florissant, MO. I learned how to drive at Lee's Summit. My mom and dad used to take us fishing there. We would stay in the cabins at the campground. That was so many years ago, to many to mention. We had a lot of fun there. I have friends that just moved there three years ago. He works for Toyota...

God Bless, prayers and gentle hugs,

Karen

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So sorry to hear of all you and your family are going through. Hospice does not mean the end, nor is it a reason to lose hope. Although you say your family is divided on several issues regarding your father's care, I know there is one thing you all have in common ...you do not want him to be in severe pain. You need to have him under the care of someone or some organization that can help to manage his pain and keep him comfortable. If I were in your shoes, I would talk to my oncologist and ask him to shoot straight with you regarding your fathers options at this time. My advice would be to contact hospice, if your doctor recommends this. When our doctor saw that Dennis's pain level was becoming intolerable and that he was hardly eating or drinking, he suggested Hospice. Keep in mind that it is your decision to make as a family. I can assume your father does not want to be an inpatient at the hospital, based on your post. I know this is a very distressing time for your family right now. Please try and keep your mother's feelings in mind right now, as well as your dad's. I'll be remembering your dad and your family in my prayers.

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Pam,

I have to encourage you to contact hospice if you havent already. They helped us soooooooo much. I dont know how we would have gotten through some days without them. They can provide the support you need right now. A nurse comes to your home to help with the pain, the questions, the anxiety and hopelessness you feel. When mom passed away we decided to have memorial contributions given to Hospice. It was the right choice. They are wonderful.

Hope this helps.

Gayle

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Thanks, everyone, for your help and advice. My youngest brother is with Dad now and, after seeing him, has agreed to hospice. So Dad will have someone there who can make sure he doesn't suffer unnecessary pain. That eases my mind a lot. Right now he is very weak, in and out of lucidity, but no pain.

In a way it's strange to be sharing this most profound experience with people I've never met. But I feel more acceptance and understanding and empathy from this group than from any of the people I know -- including my own husband children. It's not that they're uncaring; it's just that they don't "feel it" the way I do. I guess you have to go through it to understand it.

Again, thanks. I appreciate everything.

Pam

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