Teeing off on raee's comments: 1) Yup...family members, even those with "power" often have differing views of the end-of-life situation. Among those views are often included whether or not the person is even at the end of life. Some people want their dad to go or "be allowed to go". Some want everything possible done all the time. For many (most?) caregivers it comes down to reaching that point where we know we're over our heads/out of our depth/beyond our abilities. We HAVE to involve more able people. Hospice folks have to deal with ALL of those varying attitudes along their path. Part of their service is examining and determining whether or not the person is nearing the end of life and conveying that opinion. This they do realizing that neither they nor their doctors actually know for certain. It's a tough job. I couldn't do it. 2) The argument about "allowing a natural death" versus "doing anything that hastens or causes death" is still with us. It likely always will be. From my limited experience, it's clear to me that the end of life is very seldom the movie-version of the event. Sometimes they pass quickly. Sometimes they become comatose and linger for many days even without food or water. It may not be any kind of peaceful or pretty. There may be peace. There may be pain of incredible intensity. "Nature" is utterly indifferent to comfort or to suffering. The Hospice folks certainly know that. They're better equipped to deal with it today than they ever have been.....but there are still no guarantees. The process may or may not go smoothly and they have to handle any eventuality. Yes...tough job. They have better drugs now than they did twenty years ago and better understanding -- MUCH better than forty years ago. Still, I've seen what I regard as the senselessness of several cases. In the cases of my own mother and father who died at home under Hospice care, we pretty much kept them under the drugs for their last days because allowing them to emerge allowed them to feel what was happening....by which I mean to feel the intensity of the pain that came with even a vestige of consciousness. Neither I nor my family are law-breakers/flouters and we allowed the Hospice folks appropriate control during this time. Their efforts were successful all along the way. However, during the end-times I often thought how ridiculous it was to continue the dosages of pain killers prescribed. What, exactly, would be the difference between giving enough of the pain med to keep the person comatose thereby, in my folks case, allowing them another few comatose days without food or water when you absolutely know they're going to die, actually intend that they die, and simply giving them a life-ending substance when that point is reached? The only difference I can discern is additional hours or days unconsciousness, possibly punctuated by periods of intense pain if the meds wear off too soon. Unfortunately, that's the euthanasia argument and I have no wish to open that box. But it is coming to all of us if we live long enough. I think it's a rational question.

Well, things are worse. He does have a urinal but just keeps getting up during the night. He's not sure what he wants or where he's going. Our AC is not cooling as of 9:30 last night so opened the doors and such and have the ceilig fans going on high. He went zooming out to the deck saying he had to go to the bathroom. I thought he was going down the stairs but was able to stop him. I am staying up all night and getting in a nap during the day. I am really dragging. My daughter has been pleading for me to get Hospice involved. I guess I'm just so tired, I'd sign up now but think they might not appreciate it on a sunday and at 5:50 am. :O) I think this has to do with my feeling guilty as if I'm giving up on him. I still have not been able to talk to the cardivascular assistant. Always busy or not available. I'll have to make a decision without my questions answered. I am extremely disappointed in them for not talking to me. She's the one that said they would be there to help me any way they can. Yeah right!!! I have accepted the fact I cannot do it all myself and need help. It just seems selfish to consider my needs. So much I want to do that I enjoy but can't. That leads to resenting the situation. He made the wrong choices after starting with heart issues in 83 by not listening to the doctors and continued to ignore their advice through the years to some extent. I get angry about WHY. WHY am I having to give up everything because he made the wrong decisions. Then I feel so bad for even thinking that. Like being on a yo-yo. I'm feeling things that I shouldn't. I will sign up for Hospice tomorrow as it just can't continue as it is. I just have to find a way to convince him I need help. I've tried explaing that my legs and feet are having spasms from the neuropathy and the bulged discs are so much worse now, He just doesn't want a stranger in our home. Just have to find a way to convince him. Well this ol' lady has rambled much to much. I can't begin to tell all of you how much you have helped me. Just feel so alone at times but you have been there with advice, suggestions and reference info. Thank you so much. Lynn

The patient has to request that the friend be allowed access to information. The nurse is doing a good job. Ask the nurse to please pass along your name and phone number to the patient's family... there must be someone involved... and ask that they call you. Unless you go in person, that's the best you can do.

HOME HEALTH CARE - this is a service that can also be provided by a home health care agency AND PAID FOR BY MEDICARE....Mom had that for several years, however, it is very limited in what they provide. When she had that level (home health care paid for by Medicare) she was still able to get around with a Scooter, feed herself, use the toilet; as her abilities declined and after a ten day hospitalization with massive bladder, kidney and lung infections, her urologist stated that we needed to consider Hospice care. I contacted the agency we use (Heartland) to ask what the requirements were....did it mean six months to live? They told me NO, you needed to have an incurable condition - they told me they had folks who had been clients for more than five years. I am in Texas - you may find it different in your state, but Medicare did pay for home health services for several years prior to hospice; the rules may have changed on home health care since she has gone to hospice. If you have a loved one needing more care than the family can provide, your best bet is to simply call one of the agencies in your area that provide HOME HEALTH CARE and HOSPICE CARE. Ask them what qualifications you need to be accepted. Once you know if you qualify for either one, then ask them what the regulations are regarding care....that is your best bet. Carolyn who is now dealing with a 95 year old father who is feeling guilty over putting wife of 71 years in a nursing hom; Mom aged 91 who cannot do ANYTHING for herself, and who has some dementia and DH age 58 who is fighting esophageal cancer. Does anyone have the timetable for when I am allowed to have my nervous breakdown?