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What i need to keep in mind about the last days


gchang817

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Well the time has come to be part of this group in the message board, one way or the other. My father is unable to go through anymore chemo treatments, and any other treatments would just make him more sick and less coherent with little chance of effectiveness as he has not responded well to treatments.

What are some items that i need to take care of before the time comes? He is not fully aware of the prognosis, the doctor has hinted at what is happening and we have brought up the subject in round about ways but he does not want to accept it. But he no longer wants to see other doctors as well.

Financially i think that we are taken care of because all accounts either have a beneficiary or are held jointly. The house is not held under his name and we have transferred ownership of the cars.

We are beginning to set up funeral arrangements just to prepare ourselves for what lies ahead.

I have been thinking about introducing the idea of hospice and have told him about the program. It is difficult to convince him to think about it because he is in no pain, just labored breathing and he is on oxygen basically 24/7. I am trying to look for the right program but it difficult as i need to tend to his current needs and it is difficult to do the research. He is also of sound mind and judegement as far as i can tell.

I am trying to talk him into getting a dnr or set me up as the health care proxy, the one thing that he has always said to me is that he does not want to suffer. I believe in new york we need to have a physician sign off on it and thats it.

I am speaking very matter of factly, and i do not want to come off as callous. It hurts me to death that we have to end up here right now. But if this is where we have come i want to take care of everything quickly and efficiently so that i can get back to enjoying my father and the last days i have with him and making him comfortable. There is always this stupid practical side to this insidious disease.

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Regarding hospice the best thing to do is to try to think of anyone you know that has used a hospice in your area. Think of friends, friends of friends and call and find out what their experience was like. In my area for example, there are about 5-6 hospice programs but I would only recommend one of them. Once you decide on one you need to contact them as soon as possible so they can make arrangements to care for your dad.

You don't say if your dad has a will, but it sounds like most things are in joint ownership. I can tell you from experience there is no planning for all the things that need to be taken care of when someone dies. I am still finding things that I need to do or change that I never thought of.

I am sorry there are no treatment options left for your dad.

Rochelle

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Are you the main caregiver to your father?

Anybody else in the family to help?

For the hospice, getting the good one

is on top of the list, easy to introduce

your father to it, like saying

''They will help me take care of you''

Your father may do very well for a long

time without treatment.

Hard to say what is needed to be prepared

as your situation (for me) is not clear.

But the important part is to let your father

know he is love.

Jackie

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I have to say I agree with Pat... the "stuff" will still be around when he is not... you can handle it all then. Right now, you should concentrate on your Dad... these are hours and days that will live on in your memory forever, believe me, they will be what you remember. Make them the best memories possible.

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I'm sorry that there are no more treatment options for your father. This must be a very difficult time for you. I'd check with an attorney re: what it is best to do before he passes and what should be left until later. I think (I'm not an attorney, so I won't say anything any stronger than "I think") he needs a will, Power of Attorney, and (can't think of what it's called at the moment) a document naming the person who is to make medical decisions if he is unable to do so himself. This document will also indicate under what conditions he does not wish to be resuscitated.

Muriel

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Your father doesn't sound like he's doing to badly. Never under-estimate the power of the body. It can shock you. He may be here for months, I've seen it happen time and time again.

I would think that spending time with your father would be your top priority. Once he's gone you can never get him back. I know when I and my 3 sisters went through this with both my parents, the fincances, and stuff wasn't very important. And all that worked out in the end anyway.

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I dont really know what to think. He is in no pain his breathing isnt terrible. His blood levels are very low and when procrit was used the hgb level did not go up. He has not gone for treatment since late december, it has been about a month. His CEA level was at about 5.1. His blood pressure is low (90's to 115 / 60's to 80's). I have been trying to get him to a second opinion but he seems very disinterested in seeing any doctors. So we are enjoying his company everyday. We had a good time looking over old photos today. Why is it in only times like these do we remember all the good times.

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Well my father doesnt look to be doing too well. His oxygen saturation levels are at about 94 with 2L of oxygen per minute. There seems to be no signs of mets, no pain no confusion. How will it be in the end? Will it be that he suffocates? just wondering how it will go

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Hi and sorry to read your Dad is not feeling well today. With my sister, the not being able to breathe came on her suddenly. I would suggest calling Hospice. They will be there to make sure he is comfortable and at ease. We waited on Hospice because she didn't want them there..I wish we had not.

Love to you,

Bobby

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I am so sorry to read this post. Hospice would be the way to go. Please look into that, they will make him very comfortable.

You seem to have many things in order. Just give him all the love you have.

Maryanne

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The whole hospice thing can be phrased as "no different than a will." It's just easier to get the paperwork out of the way when you are feeling good and then just forget about it.

Maybe that will make hospice more tollerable to your dad. Tell him ideally you address it now and they don't actually have to get involved for another 5 years...but at least 5 years from now, you don't have to worry about it.

The other thing with hospice was the dnr thing...they do all the paperwork and file it with the state. Mom had a living will and the EMS guy said he would have ignored it as it wasn't the official state doc...so that's just another thing that hospice can do the right way.

And I don't think you are being callous. It is unfortunately all part of this process which none of us ever wanted to be a part of.

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Mike,

Sorry to hear about your father. I would suggest that you contact your local hospice group. In the meantime, there is an excellent web site at:

http://www.hospicenet.org/

There is lots of information there about hospice, but also end of life issues, symptoms and also information for caregivers. Hope it helps answer many of your questions.

Michael Lewis

Seattle

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Hi,

I strongly echo Bobby's sentiments. Hospice was not allowed in my husband's situation because he was continuing treatment.

I'm not going to dance around this issue -- I wish I had known what could happen when I lost my husband and don't wish his end on anyone. Nobody wants to talk about these scenarios, but you are very smart to ask these questions.

You need people at the house to monitor his blood/oxygen levels. I'd crank that baby up a bit so his levels go up -- but therein lies the danger of not having a professional on hand to know what is the right level and what is too high. (Too much oxygen is bad also.) Low hemoglobin contributes to low blood/ox levels too.

I gently nudged the oxygen up on the night I called the ambulance to take my husband to the ER. Stupid me, I'm gently nudging it to over 4 liters and the paramedics immediately put him on 15. He stayed on 15 with low blood/ox stats until he passed, but at least he was able to get the morphine at the hospital.

This all can come on very quickly, so please take the health care power of attorney and hospice and put them on the front burner. Trust me, you don't want to be in the situation I fell into with my husband suddenly suffocating and anxious beyond belief. Not a warm fuzzy feeling. You need to have morphine on hand to ease his anxiety -- this is huge! You'll have a very traumatic experience for your Dad on your hands if you don't move now to insure his comfort. Some people can be on hospice for long periods of time -- this may not be the end for him, but better safe than sorry. Get them on board so you have the tools necessary to keep your Dad comfortable.

Plain words -- spoken from my heart to you because I've been there and it isn't pretty.

Many best wishes for more peaceful time with your Dad,

Welthy

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