Update on dad
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Thank-you for your replies. My dad has a DNR. The doctors have said that the stents will block over and over again. At first when the doctors talked about not trying to open him back up I couldn’t understand why, but there is a man in his room that is being fed through a tube. Cannot get out of bed. Is sedated continuously, because he tries to pull out all of the IVs and does not really talk in the rare chance that he is awake. My dad was weak and struggling with the Parkinsons. He has a syndrome called Shy-Dragers with the parkinson’s. His neurologist said there was nothing they could do for the shy- Dragers. It disables him even more than the parkinson’s does. I could not stand to think of him laying there in that home like that. He would not want that. It’s the selfish part of me that would like to keep him here. He would not really be living. Sometimes I feel like screaming. This can be over whelming. I’m sure you understand. I try everyday to be positive, it’s just so hard. It’s like waiting for that call to come and hoping to get there in time. I’ve went on and on. I’m sorry for the loss of your husband Lainy. I would like my mother to be able to talk to someone who has went through this. I’m sure it would help her so much. His shoulder does really hurt him. He has alot of arthritis in it also. We don’t really know where or if the cancer has spread to other places. He has been complaining with the side where the cancer is. The nurses have him on pain meds regularly. He gets stronger meds when he has a really bad day. The neurologist said from the beginning that he was to weak for chemo or radiation. I pray everyday day that he dies in his sleep. Hospice has been so good with my dad and mom. Thank god for them. Thank you for reading my post. It helps to know we are not alone. I hate to think of other families having to go through this. Thank you for caring.
SusanDear Marvin, welcome to our wonderful family but sorry you had to join us. I am so sorry about your Dad. There have been discussions on this Board many times about Korea and Viet Nam. My husband was in Korea and passed in December from CC, he was 78 after a 5 year battle. If you go to our search button at the top of the page and type in Korea or Viet Nam a bunch of posts will come up talking about that subject. Also, I would like to suggest you repost this first post of yours under INTRODUCTIONS as I am afraid it will be lost in and among this other thread.
I am curious too, like, Marion as to why they would not do a stent exchange again? Have you thought at all about a 2nd opinion? Perhaps this doctor is not familiar with CC. Wishing all the best to your dad and please keep us posted.Hello marvin….Welcome to our site. You have found the right place for support and information and you will be surrounded by people who care about you, your Dad, and people who understand this disease.
I don’t quite understand the comment about “nothing to be done” if the stent blocks again. Does this reflect your familyI’m not sure where to start. My dad is dying from cc. For about two years his MD said he had alzheimers. He steadily got worse. Falling all the time. He is 77. It was devastating for my mother. She is 75. He had little things going on all the time. His doctor said it was the alzheimers. Finally after one of his trips to the hospital, the therapist came.{a new one}. She suggested that he be tested for parkinson’s. He was diagnosed in Feb. 2010. It was parkinsons. By July his falling was worse, would not use a walker. He fell and dislocated his right shoulder twice. My brothers and sisters talked to my mother. She agreed , after she had spent 2 years trying to take care of him , my dad was put into a rehab center and nursing home. This has been the hardest and heart breaking time of my life. I live 5 hours away. I take care of my 3year old granddaughter everyday. I feel terrible that I can’t be there all the time to help my mother. I guess I should have said right off that he retired from the army after 25 years of service. The VA has said this is service related. He was in Vietnam and in the Korean War. Agent Orange. The worst part came in November. My sister called me on a friday night and said he was almost orange from jaundice. They took him to the hospital and found a blockage. It turned out to be a mass. The cc. They finally got in and put metal stints in the mass to hold him open to let everything flow the way it should. He is back into a rehab and nursing home now. Pallative care. Hospice has started. Nothing is going to be done when the metal stints block back up. We have been told that he will jaundice again and everything will shut down. I am so scared. I don’t know what will exactly happen. The dread weighs on me everyday. I worry about my mother. She has never been alone before. My dad has always been such a strong man. This has stripped all of his dignity away. He can’t walk or go to the bathroom on his own. Mom has to feed him. When they say everything will shut down, I don’t understand what will happen first. I wish we knew more about this cancer. When I see him I can’t help but say over and over again I Love You. The one good thing about all of this is that he is a Christian. My mother is also and holding on to God. They have been married for 55 years. I’m just scared and angry sometimes that he fought for our country and it is actually killing him.
I can only echo what Lainy and Andrea have shared. My husband also passed peacefully and we had prayed for specific things and EVERY SINGLE ONE OF THEM happened exactly as we had prayed. My husband had no pain in the end, his breathing had been labored, but calmed down when my son, my daughter and I told him of our love for him and that he was free to go. He passed so peacefully and with his loved ones with him. I am so glad that at this time, you have found this new found peace that is promised if we ask. Of course you will miss this wonderful woman, but when all is said and done, my prayer is that you will have a deep sense of joy at how great God is even when the grief is great. My thoughts and prayers are with you and your amazing family. Hold each other so close and say all the words you want to say and express the appreciation for the life you have had together. There is a strength and peace in that too. Blessings to all of you, Susan
Dear Tommy,
My Dad, like Judy fought hard, and a few times we thought it was his time to pass away. Mom and I were with Dad at the end holding his hands and telling him we loved him, and like Lainy describes Teddys passing, it was a very peaceful experience. We had felt a presence in the room since the Wednesday and a calmness came over Mom and I. In the end we both told Dad it was ok to let go, something I could never have imagined doing. He had kept saying he was not ready yet but in the end he looked and said to someone “I’m coming now”, and when he passed the jaundice, his lines on his face all disappeared and he had a look of pure peace and happiness on his face. I believe the presence in the room was past relatives waiting for my Dad. It has been 8 days now and we look back and can’t believe how we managed but we did.
Judy sounds an amazing Lady, and you and your daughters sound amazing too. You are all lucky to have each other, and your love and closeness will get you through whatever the future brings.
My love to you all
Andrea x
Tommy, everything is going Peacefully and you can’t ask for any more than that. You are all prepared and I want to tell you that the actual Passing over is very calm. It’s so quiet at the end and so calm. I was lucky to have been able to be holding Teddy as he Passed over and that was my goal. It was the most beautiful feeling to know that I was able to do this. His breathing was of course labored, but all pain had stopped, then all of a sudden I turned to my daughter and I said, you can hear a hair drop, get the nurse, and at that point I put my arms around him and it was done. I never thought I could do that but I am saying the feeling was beyond words. And I know he knew that I was holding him. Judy sounds like a wonderful woman, a really wonderful woman. Enjoy this time that is left what ever it is and know that you and your daughters are doing an awesome Caregiving job. My prayers are going out to your family.
Tommy – How wonderful that you and your daughters can spend all your time focusing on Judy and that things seems to be peaceful for you all. Wishing you the best – Nancy
Our experience with hospice has been so-so. I certainly appreciate the degree of comfort my wife Judy is experienceing. Rarely does she have any pain. I’m not so thrilled about the effort they make to keep a schedule. If it weren’t for Lainy I wouldn’t have known any better. My sister has been in the hospice business for 25 years and when she came out to help us get started it was a God send. Our nurse is as baffled with Judy’s experiences as any body. One day you would swear that she is taking her last breath, the next she is out of bed chatting with whoever happens to be here. We all see the decline in strength and overall health but Judy will not quit. A dear friend came over and had a “final talk” with her, then we prayed. I have never seen Judy at such peace with everything. I mean everything. After our friend left I felt something so powerful and good in our house that lasted all day, all night and all the next day. I had never felt this kind of presence in my life. Me, not being a religious man, I have to tell you, I truly believe in the God our friend prayed to. I find it so hard to believe that for so many years I would not let this kind of power in my life. I have to wonder if Judy saw an immediate change in my attitude that she was just so relieved. Sorry about that, got a little off track. Anyway our nurse told us we could decline their help anytime and come back whenever we wanted. I don’t think we could take as good of care of Judy without their help. Our three daughters and myself agree that Judy made the right decision to bring in hospice when we did. We all got to know Judy’s nurse a little better before we really needed her. And I mean that in a good way. My daughters and I are fortunate that we have jobs that are allowing us to take off work pretty much when we want or need to. Between the four of us Judy does not spend 1 second alone. We have read the caregivers hand books that hospice gave us and we have all seen the hours to minutes before death signs for the last two weeks. I have never loved my wife more than I do now. We hope she passes into the arms of Jesus peacefully. I have never been able to say something like that before. Thanks to all on this website who has helped me along the way. It’s not over. Tommy
While the move to having hospice come in is so hard, Lainy really encouraged me to do it and I never regretted it. It was so nice to have someone to call on if I needed them and I did need them a few times. Please let them provide you the support that you could use right now, even if you don’t see it. If Dad should show some improvement, it is reversible. You can start or stop, but I think the support is invaluable. Good luck. My thoughts are with you. Blessings, Susan
anp….I agree with Pam and Lainy in that the hospice involvement gives us the sense of finality. We tend to forget though, that above all hospice provides comfort care to their patients. And, that is of utmost importance. I am thrilled to see that your Dad is able to move around and experience some sense of normality. May it continue, and continue, and continue.
My heart is with you.
All my best wishes,
MarionHi ANP. I agree with Pam that we chose to use those months very wisely and Home Hospice allowed us the time to have with each other by taking care of the “hard” stuff. The drive to the Hospice Facility at the end…now that was a final. That was very difficult but Teddy was determined that I should drive him.
I pray Dad gets to that April birthday and he can celebrate with me, mine is in April too.anp…
I know from experience what you mean about hospice being so “final”.
I chose to believe when we got to the point of calling in hospice that they and us were helping my Mom to LIVE with cancer. I believe we were granted more GOOD days with my Mom by getting them involved. .
I sending prayers that your Dad’s pain issues are under control and as you said that you are making the most of each day!
Hugs and tons of love and prayers!
PamWell, it seems that my dad still has pneumonia. However, it is steadily getting better without medication, so that is a good thing. But on the other hand, his pain has increased tremendously from the spreading of the cancer. The doctor said it is progressing faster than they expected. They called hospice in this past week to begin pain management at home. It seems to be helping and he is actually up and about more than he was previously. The nurses are great. “Hospice” just seems so final. It has been hard for the family dealing with that. But we are all working on taking it one day at a time and trying to make the most of each day. Still hoping for a wonderful birthday vacation for dad in April!
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