That story really struck me, especially the part about the mother pulling out her feeding tube. Last November my 94 year old mother fell again and was sent to the ER. Of course, we immediatly went to see her and she seemed OK. However later that afternoon she was admitted with a pneumonia diagnosis. Later that evening her heart started racing uncontrollably and they had to give her additional mediction for that. When we went to see her the next morning, we discovered that she had puffy white "boxing glove" things on her hands. The nurse explained that she had torn out the IV with her medications, so they had to put the special gloves on her. Before I even went into her room, I saw her with the gloves up to her mouth and she was gnawing at them trying to remove them. When she saw me, she started crying out my name, begging me to get those things off her. Then she started calling for my husband to do the same. I tried to calm her and comfort her but she was still horribly agitated. My mother suffered from Alzheimer's, so reasoning with her and explaining the need for the IVs was out of the question. I looked at her, so scared, so agitted, and realized that I could NOT do this to her. We had all the legalities and directives in place. We'd already had all the conversations. So I asked to talk to the doctor in charge. He explained that in my mother's wekened state, it could take weeks for her pneumonia to clear up. In the meantime, she'd have the IVs. Then, even if she got better, she'd spend quite a while in a convelescent facility recuperating. All I could think of was that she would end up so weak that she'd permanently be in a wheelchair. And with little ability to interact with others (Every medical crisis had a negative effect on her Alzheimer's). By the time the doctor was done talking to me and my husband, our daughter had arrived. She immediatly went into my mom's room, took the gloves off, and just held her hands so she wouldn't tear out her IVs. I told the doctor that I knew what my mom wanted, I knew she wasn't afraid of death. I said I couldn't sentence her to weeks or months of misery. I told him to remove the IVs and put her on palliative care. He understood and accepted my wishes. Both my husband and daughter agreed with my decision too. So we all went back into her room and spent the entire afternoon with her. We sang songs, I read the 23rd Psalm to her (she was still able to recite much of it with me, especially the part about dwelling in the house of the Lord forever), we talked about Greek cooking, and my daughter's upcoming wedding. Eventually her fiance arrived and my mom was able to talk with him too. It was a wonderful time together with my mom. When we left her, we all prayed together. And my mother said a strong, "Amen!" My biggest worry was that the anitbiotics she'd had for one day would somehow work just enough to prolong her suffering. The next morning we saw her again, but she was so weak and pretty much out of it. However, she was clutching the little teddy bear I got her the day before. Later that afternoon, I got the call that she had died. As strange as it may seem, the first words out of my mouth were, "Thank the Lord!" She wasn't suffering anymore, she hadn't died scared, agitated, or upset. I've never second guessed my decision. I remember her crying my name. She was trusting me to deliver her from that frightening situation. I was her only child, so the resposibility was mine. She died a good death, spending her last hours of consciousness with her family.

Wanted to add the following: He has just been diagnosed now with a cancerous tumor on one of his kidneys, and the doctor said he would die in 3 months if he does not have the kidney/tumor removed. He is so frail from the heart failure and first rehab/nursing home treatment and he developed a huge level 3 bed sore while he was there what a horrible place, I wonder why the hospital sent him there in the first place. I discussed this new problem with the other person he placed on his advanced directive, and we are going to his appointment on tuesday to talk with this doctor. Also, I found a rehab/nursing home closer to his house that has a 4 star rating and is so nice and the staff so friendly, I had him moved there. I asked them to get him a air mattress for his bed sore and its healing up quickly. He won't allow his daughter to come visit him because of her accusing me of things, that I personally had no control over. He has now asked one of the staff there to send someone to him to help him have her removed from his will. I told him to just relax and calm down, and not do anything like that. He said he is going to leave everything to a charity, if I don't want it. I have no control over what he does with his will its his decision and I don't want to know. I do know that he is so angry at his daughter, and really they became estranged last year, and I did not get involved with that family issue, as I believe it is something they need to work out on there own. Actually, I was hoping he would be allowed to come home after he recovered and they could hopefully work things out.

I would think she should have all the test to determine the extent of damage to her hip. Then talk to the doctors and make your decision based on her over all health. My brother is in advanced stages of Parkinson's, is getting the dementia from the drugs that Parkinson's patients get.........and is no longer able to get up out of his wheel chair. That is the horrible truth of Parkinson's, it does come to that point. He use to get up, like your mother, and fell several times. One time severly bruising his hip, but thank god there was no fracture or break. Parkinson's patients always fight for their independence, not wanting to give in to their disease so she will continue to try to move, until the disease finally prevents her from being able to without assistance. Talk to her about her choice, don't just make it for her. The dementia most Parkinson's patience have is from the long term use of the drugs to treat the disease. More often than not, the mind is still there, functioning and aware of what is going on around them. Most "normal" people do not realize this and therefore treat Parkinson's patients like they are totatlly demented. I know, I have watched it happen to my brother, until I stepped in as his advocate, now the folks at his nursing home see him for the funny, caring and awesome man he really is.... Linda J

I created a posting in the Caregivers Forum (linked below) on the new POLST form, "Physician Orders for Life Sustaining Treatment", which is a recommended addition to an Advanced Health Directive. It deals specifically and only with palliative care issues. It can only be completed by your doctor, with your input. This is a general blank form which is accepted by all doctors and HMOs. I found out about it in the Open Enrollment booklet from our current HMO. This form is very recent. Our AHD, for example, does not include palliative care language although it was done only 2 yrs ago, in 2007. So I thought that especially for those who have been assiduous in getting all their legal affairs in order, along with their financial affairs, it would be helpful to have this new info. Here is a link that might be useful: posting on Caregivers: POLST form