applewe Posted September 18, 2006 Share Posted September 18, 2006 On Sept 10, my husband was huspitalized in respiratory distress. When he was released on Wed it was with a referral to hospice. He has superior vena cava syndrome, making his upper body very swollen: eyes, face, neck arms, chest, etc. His color is very poor. he sleeps a lot now, for which I am thankful. I only hope I can keep him comfortable and happy. Some times he is so agitated and anxious. He is confused. he'll ask for something and then get mad when I bring it to him. It is so hard to whatch him like this. I get frusttrated trying to figure out what he wants, then I get angry with myself for not having enough patience. I wish I knew how to handle things better. I think that by the time I get it figured out, it will be over. Quote Link to comment Share on other sites More sharing options...
Don M Posted September 18, 2006 Share Posted September 18, 2006 I am sorry that it has come to this for you and your husband. Hospice should be able to help you a lot. Don M Quote Link to comment Share on other sites More sharing options...
Ry Posted September 19, 2006 Share Posted September 19, 2006 I am sorry they have referred your husband to hospice. Did they radiate the tumor on the vena cava to reduce the swelling? My husband also has Superior Vena Cava syndrome and the radiation helped the swelling. I hope all goes well with hospice. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 19, 2006 Share Posted September 19, 2006 So sorry. Don Quote Link to comment Share on other sites More sharing options...
applewe Posted September 19, 2006 Author Share Posted September 19, 2006 Arnold had radiation for the svcs along with chemo. it helped for a while, but the tumor has started growing again. The cancer has metastisized to the bones and lymph glands. We have tried everything he wants to do. I have talked with him about other types of treatments, but he is not interested. I think I am having a more difficult time stopping treatment than he is. Most of the anxiety comes from the shortness of breath and confusion. When he can't explain himself or can't understand what I am telling him, it makes him frustrated. He also gets claustrophobic and if I get too close at the wrong time, he will push me away. The tough thing is not knowing how he will react at any given time. Even though I know it is not a personal attack, it hurts just the same. when I don't sleep at night because I am up with him, i get rather impatient with all of the changing his mind and anxiety. I do everything I know to do, but it doesn't satisfy him. sometimes, I just need to get away from it for a little bit. Even a few minutes helps. Thanksto all of you for your encouragement. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 19, 2006 Share Posted September 19, 2006 I am sorry you are going through this. I cannot add to the advice and wisdom that the others have already shared here. I can and will add my thoughts and prayers for you and your husband. Please let us know how we can help you. My best to you, Chris Quote Link to comment Share on other sites More sharing options...
sharonjo Posted September 19, 2006 Share Posted September 19, 2006 I am so sorry this is happening to your husband (and you). I don't have any advice to offer, but I will keep you both in my prayers. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
applewe Posted September 19, 2006 Author Share Posted September 19, 2006 thank you for your kind words. Your prayers mean a great deal to both of us. we are Christians and know that God is in control. He never promised that life would be easy, only that He would be with us every step of the way. i am so thankful for His promises and for the certainty of where Arnold will spend eternity. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 19, 2006 Share Posted September 19, 2006 I am sorry all of you are dealing with this.Hoping hospice can help with any pain and be able to relieve you of some of the uncertainties you are going through right now. Quote Link to comment Share on other sites More sharing options...
Mskim Posted September 19, 2006 Share Posted September 19, 2006 You and your husband are in my prayers.... when my mom neared the end Hospice directed us to give her small doses of ativan when she panicked. It was very helpful although she was groggy and wasn't as able to communicate. She was comfortable though and we all said what we needed to before hand. I wish I knew the best way but it is all so painful and heartbreaking, none of them sounds right. I am so sorry... Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 19, 2006 Share Posted September 19, 2006 Is there anyone who can sit with him for awhile, siblings, family, friends. Someone so you can get a break and maybe just go to the mall and walk around, get your nails done and a pedicure? I am worried about you too and you need some time to yourself so you can be somewhat refreshed and able to cope better. Remember we are always here for you 24/7 if you feel the need to vent, need support or prayers. Please do something to take some time for yourself as that is very important. Maryanne Quote Link to comment Share on other sites More sharing options...
shineladysue Posted September 19, 2006 Share Posted September 19, 2006 I can only imagine how hard this must be for you. Hopefully , Hospice can be a big help to you and your husband. My husband had svc and had radiation , as well as stents put into the vein, but not all circumstances are the same. Sending prayers . Sue Quote Link to comment Share on other sites More sharing options...
applewe Posted September 19, 2006 Author Share Posted September 19, 2006 We are so blessed with friends and a wonderful church. A short time ago, freinds from the church came in daily to care for Arnold so I could go to work. When he was hospitaliizwd on 9/10, I took two weeks off to take care of him. Two of our sos were with me at the hospital. A daughter from Texas is coming this week and will stay for 10 days along with our youngest son. He will stay long term while I work as much as possible. Friends continue to come in. Thye let me get awy, go to the store, etc. One even took my car to a nearby community for servicing (nearby meaning 50 mi). I am somewhat torn right now. I do appreciate hospice, but I am also weary of all the "new" people coming in and calling. I would like a little less right now - seems like we have no privacy at all. If I turn down any part, I am called again and told how important it is. Example - We have great support from our own pastor, I really do not need or want another "chaplain", but I am pressured to let her come. So though I want to rest, I have to make time to have a number of people here and take phone calls. I don't wnat to seem ungrateful, I just want a little less so I can rest and take care of Arnold. Our nurse is wonderful. She came on with home health a few weeks ago. I have taught her children and already have a good relationship with her. Arnolf loves her. She is so kind and sweet. Such a big help with his care. I'm very thankful she is still with us with the transition to hospice. Arnold is getting so tired, he asks for his kids, but is tired from too much company. He seldom awakens when others are here. It sure is a tough call with how much is too much. thanks to all of you for your responses. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 19, 2006 Share Posted September 19, 2006 applewe I am not 100% sure about how hospice works, but my understanding is that they will give you as much or as little in the way of support as YOU want or need. I am sure they will understand your need for less and will not be insulted. I am sure that someone with much more knowledge of this will be along shortly with better advice and answers. I will keep you in my thoughts and prayers, Chris Quote Link to comment Share on other sites More sharing options...
applewe Posted September 19, 2006 Author Share Posted September 19, 2006 Thanks Chris - I think I am overwhelmed right now. Once I get past all of this intial "stuff", I will be better able to limit things. Right now, the pressure is on to meet with every one at least once. I found myself this morning even wishing that one of our best friends would just leave us alone for a while. what a terrible thing that is. I'm so glad I didn't say that, because i really do love and appreciate them. I'm just tired and want some time alone. Thanks again for th egood advice. Quote Link to comment Share on other sites More sharing options...
TamHol Posted September 19, 2006 Share Posted September 19, 2006 A horrible thing to see and have to bare ........ Good luck in the coming days. The strength will come from somewhere, when you least expect it..... Tammy Quote Link to comment Share on other sites More sharing options...
melindasue37 Posted September 19, 2006 Share Posted September 19, 2006 I'm so sorry that you are going through this. If you can, please let hospice guide you. They are trained professionals and will make things so much easier for you. One of the most important things we learned from my Moms hospice nurse was that when my Mom got really aggitated and restless her body was in pain/stress. It was so hard to give in to the medication because my Mom never liked to take anything. But, as soon as she was comfortable, it made things easier for all of us. Praying for you and your family. Warm Hugs, Melinda Quote Link to comment Share on other sites More sharing options...
Ann Posted September 21, 2006 Share Posted September 21, 2006 So very sorry you are having such a tough time of things right now. I'm glad that Hospice is there for you and your husband. Although it sounds as if you are overwhelmed with all the people right now, things should taper off as the Hospice staff becomes more familar with the needs both you and your husband have. Be grateful that you have access to such an attentive staff of Hospice workers and volunteers. Some of the people on this board have had a terrible time getting enough help from Hopsice when their loved ones were ill. I know how frustrated you must be by your husband's confusion and anxiety. When Dennis was very sick, this would drive me crazy. I so wanted him to be mentally clear and it was such a hopeless feeling to be able to do nothing. Katie was absolutely right about not "forcing" a loved one to do anything. They seem to get more agitated when an attempt is made to "make" them do something, like eat. I did the same think that Katie did with her dad. I would just leave finger foods that Dennis liked wherever he was sitting. This way, he could eat and feel like it was his idea rather than pressure from me. I will be praying for you and your husband. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 21, 2006 Share Posted September 21, 2006 applewe, You have gotten more great advice here. Hopefully things will begin to fall into a routine that is comfortable for everyone, including you. Just wanted to touch base and let you know you are in my thoughts and prayers. Chris Quote Link to comment Share on other sites More sharing options...
applewe Posted September 21, 2006 Author Share Posted September 21, 2006 thank you for all of the advice and encouagement. Yesterday was a very rough day. His heart rate went very high and his O2 sats low. He was of course very anxious. I took a lot of time to get him to settle down. finally he was able to sellp for 3 hours in the afternoon (it all began at 3:30 am) As for hospice, it is so hard for me to let people know that I am very thankful, but it is tough to deal with so many different people. WE had not been back from the hospital for 1 hour when I was having to answer a lot of questions. We were all very tired and just wanted to get my husband settled in. Once I got over the the intial onslaught, I figured I could handle it. and I am doing alright. arnold on the other hand told the hospice volunteer co-ordinator that he did not wnat any one here. I'm sure you understand the feelings of being overwhelmed with being care giver, and all of the other responsibilities that don't go away - then adding more stuff on top of that. Bottom line, I am very thankful for the services. I will adjust. as for eating, I try to have things on his table all day that he can choose from. I offer him other things but do not force him. He is drinking well, but has not appetite right now. That changes from day to day as well. I am thankful for all of you. This support is great for me. Thanks you Quote Link to comment Share on other sites More sharing options...
bauner95 Posted September 22, 2006 Share Posted September 22, 2006 I am so sorry your husband is going through this. I hope that hospice will help you. Quote Link to comment Share on other sites More sharing options...
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