January 17, 2011 at 1:12 am #46625
Dear Tommy, you are renamed Tom Terriffic! You are a wonderful husband and Care Taker. Not to worry you will know when its time for what ever you need to do. Three girls? Thats also pretty terriffic!January 16, 2011 at 5:44 pm #46624tommyMember
Thank you all for the advice and well wishes. We do have a living will and Durable Power of Attorney naming me as the decision maker. I get so involved trying to take care of Judy that I forget what all we have done. Thanks for reminding me. I will talk with Judy’s nurse and Judy about the importance of staying on top of these meds. Right now she is coming out once a week to check on things and that seems to be working pretty well. The Nurse said she will come more often as the need arises, I just hope I recognize the need before it becomes unbearable for Judy. With the help of our three girls I feel pretty confident we will take good care of Judy. Thank you again for everything. TommyJanuary 16, 2011 at 5:48 am #46623charleaMember
Tommy, you and Judy should have a caring discussion about Judy’s desires and follow Betsy’s advice regarding the Durable Power of Attorney and Living Will. In our area those are required to enter hospice. We have two types of hospice, one in which they can be called in prior to a 6-month survival projection and the other is a 6-month prognosis. I think that hospice is as much for the living as for the patient as you can get so much support from their knowledge regarding end-of-life issues, particularly pain control. Judy’s wish to be in charge at this time is important to her since her health has been taken out of her hands. Once she feels she can give up that control the nurses will guide you in her care. My experience is that the pain meds are given as needed, not on a specific schedule. Sometimes the person wants to be more alert and aware than the meds allow so they exchange some pain for the ability to enjoy family and friends. When the pain is too great, Judy will use the medications. Then it will be important to stay on top of the pain, not allowing it to become too severe before meds are administered. Never worry about taking too much. May God keep you in his hands as you walk this path with Judy. You sound like a loving husband…January 16, 2011 at 4:23 am #46622
Tommy do not fear, you will be in charge. Suggestion: You should ask Hospice to explain to Judy why pain meds must be taken on a timely basis. If the pain is allowed to get out of hand by not being on a regiment, it is harder to get the pain under control. This happened to Teddy. Once he understood their explanation he was so much better. OOPS second suggestion: Have you and Judy sat down and talked frankly about who is going to make decisions down the road? I strongly suggest it. Let her know she can trust you with the guidance of Hospice to make her decisions and maybe when she says she does, that will give you more confidence about it all. Part of our role as care giver and advocate is to step up and make the decisions along with our loved one for as long as we can then we can quietly slip into the solo decision maker when needed. Best wishes.January 16, 2011 at 4:09 am #46621betsyMember
Does Judy have a Living Will or Durable Power of Attorney for Health Care? In these legal documents, she can state what she wants to happen if she is unable to make decisions and she can specify you as the person to see that her wishes are honored.
BetsyJanuary 16, 2011 at 4:04 am #46620tommyMember
I just finished reading this article and it made me feel better about our decision to bring Hospice on board. It also makes me realize how tough my Judy is. Watching the progression of this disease from the beginning, April 15 2009, to where Judy is now, I have to wonder if we should have brought Hospice in sooner. Her quality of life has certainly diminished, not to the point where she can’t do things for her self, but the constant pain and being just plain sick all the time would drive me crazy. From the beginning all decisions pertaining to treatment has been made by Judy. Now that Hospice is coming to the house all decisions are still made by Judy. I appreciate that is how it goes, but sometimes I think she lets her pain go to far before she will take a pain pill. I wish there was someone to tell her a schedule to follow so she wouldn’t have any pain at all. There are instructions on all the medication but no set schedule. Maybe I’m just a big baby because I DON”T like pain. Surely when it gets too bad she will take meds regularly. So far that is the only thing I can complain about. Judy is still in control of things and I’m worried that when the time comes that she can’t make these decisions, who will? I hope they let me, or listen to me. I am scared if they don’t hear it from Judy they will not do anything. Thanks for listening.January 15, 2011 at 11:06 pm #46619betsyMember
I think the thing about Dr. Gawande’s article that made me the saddest was when he said, “The end comes with no chance for you to have said goodbye orJanuary 15, 2011 at 9:25 pm #46618andieMember
Thanks for posting that article, it made an interesting read.
Back in April when my Dad was diagnosed he was told quiet bluntly whilst in his own, you have terminal cancer and 2-3 months to live. A week later after being transferred to a Liver specialist hospital we were told that Dad could have Gem/Cis once his bilirubin level was low enough and that they had had a great success with this treatment. To us at the time this meant years not months. A few weeks later a meeting with the Oncologist didn’t go as well as we hoped when he said “this treatment won’t cure you just give you a few more months” something at the time we didn’t want to hear. As a daughter watching your Dads face crumble and fill with fear is something I wouldn’t want my worse enemy to go through. That night I worried that would it be worth the chemo effects for just a few months more, the answer was yes it would as my Dad would still be here with us and even then I was looking for trials or anything else that could prolong my Dads life.
Chemo or any other treatment has never got to become an option, Dads bilirubin has never been at a safe enough level, the tumor blocks the bile duct and the stents are useless, his only relief from the bile is the external drain. This news was given in September, this time by the Clinical Nurse Specialist after Dad had had his external drain, she told us 3-4 months max and Dad would just go more tired and eventually enter a coma. Mom went to pieces and it was the longest journey home. Our hopes had been pinned on Chemo and now they had been dashed.
Dad is in that 4th month now and apart from being more tired he said he feels no different than he did in September. He looks thin, which is so hard to see but he’s still got that sparkle in his eyes. I now wonder whether chemo wasn’t meant to be for a reason, perhaps Dads quality of life would not have been so good and the summer days out together wouldn’t have happened. Dad has refused hospice help at the moment as he wants to keep things as “normal” as possible. The DN come everyweek and his BP etc are all fine, no fluid retention and most importantly no pain, he can still take care of himself and doesn’t need Mom to help him with anything. When the time comes then we will call on home hospice help, and if Mom feels she can’t cope then Dad has agreed to going into Hospice. I know that day will come sooner rather than later but for now we take it day by day.January 15, 2011 at 9:16 pm #46617
Hi Nancy. The patch also did not work for Teddy as well as the Morphine. Unfortunately they switched him just before he went to the Hospice Facility. They never offered him intervenous at the facility either. My daughter and I have a meeting with the Hospice Facility this coming Friday to discuss the way he was treated or I should say not treated. I have also written a letter to the National President of Hospice but have not heard back yet.January 15, 2011 at 7:53 pm #46616nur1954Member
Charlea – I can only give you my son’s situation with the pain patch (fentanyl). He was given it but was still having a lot of pain. One of the nurses in the hospital at the time said the medicine needs to be absorbed by fat and he was so thin at the time, she didn’t feel it was helping him at all. He did better with the morphine on board where he could push the button and get a dose delivered as needed. I’m not sure if this goes for everyone, but that was his experience. Hope that helps……NancyJanuary 15, 2011 at 6:00 pm #46615charleaMember
This is such a good thread for those of us who are nearing hospice, have friends or family needing the service or want to be prepared with the information for future care. It is so important to know the philosophy of the hospice regarding pain management.
I don’t see much comment on the use of pain patches as primary pain management or as an adjunct to IV or oral meds. It seems like a good option for those who are unable to keep oral meds down but don’t want an IV keeping them down.
I’m waiting for the results of my CAT scan from last Wednesday. It’s the same for all of us I suspect. My oncologist comes to my local hospital once a week so my appointment is next Wednesday. The waiting is more difficult as time passes knowing that the likelihood of spread is greater with each scan. I remain active and positive and as I have said before I am not afraid. So many have shared their journey which makes the path more easily traveled….
Thanks to everyone who takes the time to comfort others while they draw strength from those who give their time and knowledge. God bless you all.January 15, 2011 at 10:00 am #46614
Dear Fightingformom, Hospice will evaluate her and then decide how much pain med she should be on. They are extremely good at this and then they moniter her and when they feel she is nearing the end you can have her moved to their facility. If Mom is in that kind of pain you could have them come now. They work very quickly and before you know it everything is set up. Is she on pain meds now? There is no reason for her to suffer with pain as they will try to make her as comfortable as they can. I know this is a very hard time, I just went through it with my husband, but try to stay strong so this time is not wasted but used to good measure. If after the evaluation they feel she belongs in a facility instead they will also take care of that. Wishing you the best.January 15, 2011 at 3:46 am #46613fightingformomMember
We found out today that my mother is no longer a candadate for chemotherapy treatments as the cancer has progressed to the lungs, bones, brain.. its too far gone. Hospice comes to the house on Monday morning to evaluate the situation. I knew this was coming but just hearing it has me in a whirlwind. Im back to Nov 2009 when she was diagnosed. I thought I would be ok because I knew it was coming but im not.
My question is my mother is in a LOT of pain. Will they keep her home or allow her to go into a facility. How would that all work?January 13, 2011 at 6:02 pm #46612marionsModerator
Lainy……You and I had plenty of discussions re: the end of life care Teddy received by the Hospice Facility. GI cancers notoritously are difficult to control at the late stage however, patients have to be assured to receive the utmost of pain control and nausea control. If they can’t provide it then patients need to be in a hospital setting. This should have been made clear to you.
I hope for your meeting to take place soon, because you are entitled to some clarity regarding their failings regarding Teddy’s care.
I am fully behind you on this.
MarionJanuary 13, 2011 at 5:39 pm #46611marionsModerator
This new approach regarding physicians discussing end of life care is to be implemented now. This may be difficult for some doctors to address. They are tought to keep patients alive and they may have problems separating one from the other. The reality is though, that all of us, at one point, will be confronted with this issue. A good time to start marking our wishes clear is when we are healthy and of clear mind.
All my best wishes,
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