Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hello Alan, I was hoping that you would respond as you always have. I have learned so much from your posts as well as from others who really informed me about the reality of adv. PCa. Truly, all of the advice from this group fortified me throughout this whole ordeal. I never got overly nervous since I rather knew what was happening though I can't say the same for some other family memers who almost acted as if they just realized the seriousness of cancer. It's been a bit disheartening to see his daughter's behavior after she got the Power of Attorney signed. She's been somewhat rude and doesn't seem to understand that the Power of Attorney can be changed. As you say, being young and having a parent die if overwhelming, and we are overlooking her and being as understanding as possible, but we have to change the Power of Attorney since she lives in another state, and no medical personel will tell us what is going on, and she usually doesn't answer her phone. We are somewhat shocked at her behavior. We must know what is going on in order to help Jack, especially since he has mental problems and doesn't know what is going on either. Regardless of these issues, I understand that this process probably won't last long. At this point, I wonder if anyone has had Jack's symptoms and survived? I am shocked over his oncologist's behavior! He has never remotely acted as if Jack had a serious condition! I think this is plain wrong, and keeps everyone ignorant and unprepared! In spite of all of these things happening to Jack, the doc. acts as if nothing unusual is going on. ( Jack has signed papers in his office to talk to both my broher and I about his condition, but he won't). Had I not joined this board, I would just think that all of this was normal, and that Jack would be getting along just fine eventually. Can you imagine a doc behaving like this? You're so right when you said that a few months ago, before I joined this group, that I didn't know what I know now. I would absolutely not have known how to handle all of these issues, and I have to explain now to other family members who are grieving as if they just found out that Jack has a serious illness. I am confused about MRSA. At both the hospital and the living facility,no one is taking this serious. They don't have protective clothing, masks, don't wash hands and don't mention the infection. Today while I was visiting Jack, he had a roommate who has an autoimmune disease w/ a white bood count of 2. I told the man that I thought that he should move away from Jack because of MRSA and he did. I asked the nurse about Jack's MRSA and she acted like it was no big deal. Nevertheless, I took precaucations and encouraged my family also. Jack has sepsis, an infected heart w/ a stent all because of MRSA. Has anyone had this experience or am I overreacting? Thanks for all of your comforting words. Again, I cannot express just how thankful I am to everyone who has helped educate me about Jack's condition. I will continue to update, and still if anyone has any comments that would enlighten me further on Jack's situation, I would appreciate it. Alan, thank you so much for your words of wisdom. > > > Hello, > > I posted to the group several times a couple of weeks ago re my > > brother Jack who has advanced PCa, and advanced kidney disease. > > ... > > Hello , > > All of these things you are going through are terribly tough, but > it sounds like you're handling everything really well. I imagine > that conditions will stay difficult, but not really get any > worse. You've handled conflicting advice from doctors. You've > handled Jack collapsing in your house in the middle of the night, > bleeding and urinating on the floor. You've handled family > issues, talking to Jack, dealing with hospitals and assisted > living residences, and it seems to me that, in every case, you've > done what needed to be done and kept your cool. You've > functioned like a real pro. > > There are going to be some tough things ahead but, > psychologically, the worst is over. Now you know who all the > people are, what all the concerns are, what the options are, and > most especially, you know you can handle it all. That's > something you didn't yet know a few months ago. You're ready and > able and you know how to do what has to be done. > > As an outsider, living far away, not knowing any of the people, > I can't really give much advice. I know you'll make better > decisions on the spot than any of us could make. But I'll > throw out a few ideas and suggestions. Here are a few of my > thoughts on the issues you raised. > > 1. Talking to Jack about his future. > > One possible thing to do is to experiment a little to see what > Jack wants hear. It may be that he wants to believe that he > won't die, or it may just be that he wants to believe that > everything will be okay no matter what happens. > > The next time he asks you might try something like, > > " We don't really know yet what's going to happen, but > whatever happens, it's going to be okay. Everybody is > concerned about you and taking care of things. Your doctor > is doing a good job. The people here at the residence are > very good and all like you. Your daughter has the power of > attorney that you gave her and she's taking care of your > finances and doing everything that you need to get done. > I'm going to keep coming here and if you have any problems, > you can tell me and we'll all help. " > > And so on. The idea here is to give a more general re-assurance > for him to know that people love him and care about him and will > always take care of him whatever happens. > > 2. Jack's daughter and the DNR. > > I understand his daughter's reluctance to sign a do not > resuscitate order for her father. I don't know her, but I would > guess that she's going through some emotional turmoil of her own > and is worried that she could be responsible for her father's > death. I presume also that she's pretty young and these end of > life issues are newer and more frightening to her than they are > to people of our age who have seen all this up close before. > > It's hard to know whether a DNR is likely to come into play. > It's very possible that as Jack's health declines there won't > actually be any radical interventions available to him. It could > be a non-issue. Cancer doesn't let up. If his heart fails or > his breathing fails, maybe there are things that could keep him > alive for extra hours or days, but that might be the extent of > it. He might not even be conscious or feel any suffering while > it goes on. And if that keeps his daughter from worrying for the > rest of her life about whether she did the wrong thing, well, > maybe that's not a terrible thing. > > You might be able to get some professional advice about this. > I've met some oncology nurses who don't know all the details > about treatments, but boy do they understand what caring for a > dying cancer patient is like. I think some of them understand it > better than the doctors do. They're the ones on the floor of the > ward every day, dealing with the harsh reality of it all. Maybe > you've even met such a person at the hospital or the assisted > living residence. > > Hospital and nursing home social workers can also be very > knowledgeable about these issues. Much more than the doctors, > they understand what the families go through and what the > families need to do. > > However, in the final analysis, whether or not you can get any > advice on the details, you've got the big issues under control > and things will work themselves out. > > Best of luck to you, Jack, his daughter, and the whole family. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Keep your head up, my friend. A DNR does not have to be signed by a family member as long as the person is of sound mind. With a witness, nurse, doctor, even the hospital's legal department, it becomes HIS desire. I was with a man who was dying one time. He was laughing with everyone. The nurse came in to check him. He told her in front of his wife, myself, and 2 of his kids that he wanted a DNR. The nurse thought he was joking. He got mad and said "I'm too close to getting my glorified body. I'll come back and haunt you if you try anything." He died 10 minutes later of an aneurysm. My dealing with terminal patients has been that they KNOW the end is coming.As for the daughter, she will hold that power of attorney over your head until she realizes that there is one that replaces hers. There are limited power of attorney and durable. When you trade a car, you give the dealer a limited power of attorney dealing with the title to the vehicle traded. It does NOT give them power over your other assets. My dad had Alzheimer's and prostate cancer. TERRIBLE combination. I sat beside Dad's bed about 6 weeks before he died and prayed with him. He looked into my eyes and was crying. I knew what was holding him. Your brother wants to see his daughter before he goes. He needs for her to hear that he is ready whenever God calls him to get that healed body.Stay strong. I will keep you in my prayers. I attend a man to man support group every month. This gives me an idea for a guest speaker on the legal aspects. I know that there are elder care specialists. We need someone to inform us on the power of attorney and end of life issues. Thank you for giving me the idea. I'll call our facilitator about it.Steve S in ArkansasTo: ProstateCancerSupport Sent: Sat, April 17, 2010 12:57:44 AMSubject: Re: Update on Jack Steve, Thanks for your hearfelt advice. Today my brother and I spent the day and evening with Jack. Strangely, Jack was as sane as I've ever known him to be and this led to our ability to be somewhat more frank w/ him, but never to mention his impending death directly. We told him of his daughter's refusal to sign a DNR. Also, the staff at the facility told us that she could not legally tell us of anything regarding Jack's condition, yet the daughter is out of state and doesn't tell us what is happening. I think that she is too ashamed to talk much to us because to our surprise, as soon as she got the Power of Attorney signed, she promptly cleaned out his safe deposit box and his checking account. (She also failed to tell her only sibling, a brother, that she had been to the bank). We have no idea what was in his box, but the checking was minimal. We want the children to share the money/assets as that is what he wants, but he didn't want her to take the money w/out getting his permission. Jack wants my brother to change the Power of Attorney tommorrow. He must know now that he is dying because he actually said that he did want a DNR. He said that he had rather die than to not walk, have a catheter, use adult diapers, a stent in the heart, pass blood and so forth. My brother has a beautiful way of talking w/ Jack, laughing and joking, but also letting him know that we should know what is going on because we are here to see him very frequently and his daughter is not. Also, the dotor who thinks that he is dying is now his doctor, instead of the oncologist - as far as we know because the daughter is not communicating. She is not angry, just young and foolish, or emotional. We've never known her well since they have been estranged primarily due to Jack's mental condition. ly, she is somewhat of a drama queen. However, I do understand the seriousness of anyone's parent dying. Regardless, we are going to have to override her, though we will do it as little as possible as we know that Jack will not be here much longer and we will make it much more peaceful since we are in state and visiting daily, and should be able to know his condition daily which we cannot currently find out w/out legally changing documents. This may cause hard feeling on her part, but his peaceful passing is more important, we think. Somehow toay, he didn't ask if he was dying as he seemed to know it. We still cannot tell him the full truth, but he apparently has concluded the truth, however, even today he said that God could still heal him. I sincerly appreciate your idea and comments. > > , > > You have been a real trooper in all of this. The Power of Attorney can be revoked any time your brother feels the need. In his condition, I would actually speak with an attorney, either private or legal services, and ask their opinion. I am not a lawyer, but am a minister and I see these issues destroy families. Do it right. I would honestly be inclined to tell your brother exactly what his condition was. He knows better than you that there is something drastically wrong otherwise he would not ask. It must tear you up NOT to answer with the whole truth. God bless. > > Steve S in Arkansas > > > > > ____________ _________ _________ __ > From: mizewoods <mizewoods@. ..> > To: ProstateCancerSuppo rtyahoogroups (DOT) com > Sent: Fri, April 16, 2010 12:03:47 AM > Subject: [ProstateCancerSupp ort] Update on Jack > > > Hello, > I posted to the group several times a couple of weeks ago re my brother Jack who has advanced PCa, and advanced kidney disease. I'm just having time to post again as Jack has been very sick. I sincerely appreciate all of the former responses from this group as I learned so much, and more importantly knew how to respond fairly well to the medical staff involved. I also had read a good deal of the recommended reading in additon to reading on this site. A bit of Jack's history: 56 yrs. old, PCa stage 4,radiation, six months later bone scan revealed bone mets to entire skeletal system, PSA 2500 and w/ 9 months of hormone therapy Psa was 174 last month, lost around 100 lbs now to 140, and Jack has frontal lobe damage from an accident when he was 15 years old. Throughout all of this he was doing fine, just a bit tired, but had a good appetite and seemed fairly happy w/ his simple life....not ever overly worried about the PCa. When I first wrote the group, > I was concerned that his oncologist never wanted to discuss, even privately w/ me, how serious this conditon was. With the responses, I learned that he probably wouldn't live out the year and to get ready w/ end of life issues. This helped me tremendously, and thanks again! Finally here's the update: about 6 weeks ago Jack started seeing blood in his stools. His doctor's office told me to come in for a hemoglobin test if very much blood was seen. A family member took him to the emergency room where they admited him to the hospital, gave him 3 pints of blood, did a colonoscopy and discoverd radiation burns. In the 5 days that he was there, he contacted MRSA infection and was sent home w/ meds. When he didn't answer his phone the next day I went to his home and brought him home w/ me. He seemed initally to be disoriented, wouldn't eat, still had blood in his stool and came rushing into my room telling me that he needed a toilet, and that he was > dying. He lost consciousnes, ability to walk, and became incontinent all in 5 mins., at around 3AM. Our son-in-law rushed over to help us move him to the hospital that he had been in since they knew his "situation", 40 miles away. He had a fractured sacral bone (can't walk yet), needed a catheter, developed sepsis from MRSA, has much chest congestion, declares horrid pain, heart was infected w/MRSA and they placed a stent there to stay for 6 weeks, and he still passes blood. Seven days later (today)he was sent to an assisted living facility. He seems to be fairly alert, on and off, still on a 50mg Fentanyl Patch and Oxycodone 15mg every 3 hours for pain. His oncologist says that he just needed to go back home, get over the infection, and that he would be fine and didn't need Hospice. The doc in charge at the hospital said that he did need Hospice and would die soon. He is conscious now and asks me constantly if he is dying. With his mental > condtion, me nor no one will tell him that he is dying. He only knows that he has the last stage of PCa and I tell him that we need to wait till his bone heals so that he can walk again, and get rid of the infection. This seems to placate him for awhile. The conflicting doc's advice has confused a few family members. His daughter who lives in another state and is not close to Jack (primarily due to his mental condition) says that she will not sign a DNR for him, and to keep treating the PCa and all of the other ailments. (She rushed down and got a power of attorney and we urged her to, however, now I'm wondering if this was a mistake since it seems so obvious that he is dying. He is very close to one of my brothers and at this point(while he can still talk) Jack would change the Power of Attorney if my brother suggested it. He would also change to me). With the conflicting doctor reports, I wonder what this group thinks? Also, do we need to get a DNR > order - has anyone been through this? Would the facility medical staff actually break his bones trying to save him, for instance, if he had a heart attack? I feel that Jack is in the process of dying, but I do want it to be as peaceful and painless as possible. I realize that there are a lot of issues in this post, but comments on any one of the issues will be greatly appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 >>> . Somehow today, he didn't ask if he was dying as he >>> seemed to know it. We still cannot tell him the full truth, >>> but he apparently has concluded the truth, however, >>> even today he said that God could still heal him. This reminds of an old joke (if you can call it that), that I heard many years ago from a rabbi. A doctor walks into the hospital room of an old man, to check on his condition. After the examination, the man says: " Please doctor -- I know I'm dying, but don't tell my wife yet. I don't think she's strong enough to deal with it. " On the way out, the doctor meets the man's wife, who has come to visit. The wife looks at the doctor, and says: " Doctor, I know Sam is dying, I can see it in your face. But please, don't tell him -- I don't think he's strong enough to deal with it. " My heart goes out to you, Jack, and the rest of the family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 : The only thing I can add to the excellent advice you've received is that Hospice, done right, is as much for those who survive as it is for the one who is dying. Almost three years ago, when my Mom was dying, we engaged our local Hospice. They were wonderful, and were a great help to me, in terms of what to expect as end-of-life nears.They also provided counselling to us afetr my Mom had passed, and they stayed in touch with us for almost two years. God bless - you are all remembered in my family's prayers. Coy , Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Hello , Thanks for the post. The joke was funny, but somehow it's not quite applicable in Jack's case due to his brain damage. For instance, he is still inquiring about watering plants at his home, food in the refrigerator and so forth. If we told him that we thought that he was dying, he might try to leave the facility, call in clergy to pray for him, have a break down or blast us for doubting prayer, etc. Who knows with his broken brain. Although, I do think that everyone with an intact brain needs to hear the truth about whether they are dying or not, none of us, including all of his doctors can tell him. Thanks for your prayers. > > > >>> . Somehow today, he didn't ask if he was dying as he > >>> seemed to know it. We still cannot tell him the full truth, > >>> but he apparently has concluded the truth, however, > >>> even today he said that God could still heal him. > > This reminds of an old joke (if you can call it that), that I heard many years ago from a rabbi. > > A doctor walks into the hospital room of an old man, to check on his condition. After the examination, the man says: > > " Please doctor -- I know I'm dying, but don't tell my wife yet. I don't think she's strong enough to deal with it. " > > On the way out, the doctor meets the man's wife, who has come to visit. > > The wife looks at the doctor, and says: > > " Doctor, I know Sam is dying, I can see it in your face. But please, don't tell him -- I don't think he's strong enough to deal with it. " > > My heart goes out to you, Jack, and the rest of the family. > > > Quote Link to comment Share on other sites More sharing options...
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