MaggieforBIL Posted December 31, 2008 Share Posted December 31, 2008 Hello, I am new to this forum and just drove up 3 weeks ago (from Florida to Tenn) to help my sister with her husband. He was diagnosed 3 months ago with stage 3 LC and is now 81 lbs and has had to stop all treatment until we can get him better. I am trying to take care of him (he's 44 yrs old) and his 2 step kids (8 & 11 yrs old) so his wife (my sister) can work and keep the insurance benefits. This is terribly scary for him as I am sure it is for most diagnosed. But he won't speak to anyone as he is feeling very anxiety ridden. So he asked me finally to call a dear woman that volunteers here locally for some advice and she was sweet enough to give me this site to ask some questions. I will post my questions and hope I can get responses. But I will next go through and try to read some of the posts. I am so darn limited on time with the children and taking care of BIL (brothe-n-law). So I apologize if I am asking something that could be easily found. I am new at this, as well as BIL, so thank you for your kindness, patience and any suggestions or advise. Feel free to ask any questions. 1) He has a TREMENDOUS amount of mucus he is coughing up. He is so afraid of asperating (sp?) when he is alone or asleep. Does anyone have any suggestions other than sitting up (he has a hospital bed to sit him up to relieve some of this coughing up of phleym (sp?). 2) Other than doubling up on his Attivan (same family as Xanax), which we now have done, and doubled his dosage of Remeron (for sleep and anti-depressent and anxiety) do any of you have a suggestion for helping poor BIL through his anxiety attacks. He gets to where he wants to go to the hosptial when it happens. I try talking to him, massaging his feet, hands, head, etc. but am not sure of what to do to help when they come on too strong. Just last night my sis finally agreed to hospice. I am sure they will help. But BIL asked that I ask these specific questions for him. This is a very difficult time for them and my heart breaks, so I am trying to help out as much as possible, but feel quite helpless with what really helps. I am taking care of the meds and trying to help soothe him, but these are two areas I really need to put him at ease with. Thank you for any suggestions, Maggie Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 31, 2008 Share Posted December 31, 2008 Maggie, first let me say BLESS YOU for being such a wonderful sister and sister-in-law. I'm overwhelmed just reading your message. Has your BIL been off treatment for a while? Is there still any contact with the oncologist who has been treating him? Mucous is rather common, and the doctor should be able to prescribe or suggest something that will help. It's good that he's able to cough it up, but I can understand his fear of aspirating in his sleep. It might be helpful to keep the head of his bed somewhat elevated at all times. I'm sorry I can't help with the anxiety problem, but perhaps others can. Getting hospice involved will be a tremendous help, and I hope they can get started very soon. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
MaggieforBIL Posted December 31, 2008 Author Share Posted December 31, 2008 Awww Ned, You are so sweet. Thank you for the kind and thoughtful reply. He stopped radiation just prior to my arriving 3 weeks away. Well, he stopped probably a month and a half ago and then ended up in ICU on a ventilator due to the Neumeritis (pneumonia due to the radiation). My mom was up here helping at that point. She has "no empathy" and so was actually painting the house, throwing out toys and not checking on poor BIL (brother N law) not even once during the day. My sis asked for my help and I drove up and let Mother leave. Since then I have taken him to the hospital twice via ambulance and tried to stay with him so my sister could get sleep at home and give hugs to the boys. We are trying to keep this from being a major event in the boys lives. Poor kids, poor sister, poor BIL. Soooo to shorten my long post (so sorry I can get wordy), he now is upright 99% of the time in the hospital bed. And the oncologist seemed to think anxiety isn't too much of an issue other than when BIL takes predinsone. Well, he is dead wrong and I have heard from all the medical staff that it is as big for some as the pain. His pain levels are staying pretty under control without much help. And thank you for reminding me to check on what he has taken in the past for this mucus. I'm going to look through his box of meds and see if he and my sis hve forgotten some of what he might have taken prior to this set back. She is overwhelmed and I am trying to help her catch up with herself. This has happened so fast to them. He is VERY angry. And today he seems to be much much calmer than since I first arrived (3 weeks ago). He is just begging for me to help him with the anxiety and mucus overload. The poor dear. I am afraid to leave his side almost, because he keeps begging me to stay by him. Thanks so much. I'm going to get something medication wise to treat this. Funny how you can get so overwhelmed that the simplest of suggestions are never even thought of. Feeling kind of dumb at the moment. LOL! Maggie Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 31, 2008 Share Posted December 31, 2008 Maggie, how could he not be angry and scared. I wish I had some magic answers for you but I don't. But I think you need to have a long conversation with his doctor about how to assist your BIL. Is he eating? If he gains weight can they restart treatments? You are truly an angel. I hope you get some answers. Quote Link to comment Share on other sites More sharing options...
Donna G Posted December 31, 2008 Share Posted December 31, 2008 Welcome . You reallly describe that your brother in law is having a very rough time. I am very concerned with the weight loss. I hope you are giving him frequent drinks of Ensure of any of the high calorie nutrition drinks. Without nourishment all of his problems are worse. You are an angel to come and help support him and the family. This is a rough disease, most of us eventually get on antidepressents. Many times it is such a help just to have someone nonjudgementally listen to our problems so we can get them off our chest. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted December 31, 2008 Share Posted December 31, 2008 Hi Maggie. My name is Lynn. I took care of my husband with the help of Hospice until he passed away this past July. Larry was prescribed atropine for excess secretions. And when his anxiety was unbearable, we had haldol to use along with the ativan. The folks from Hospice will be an invaluable resource to you and your brother-in-law to help manage his care and comfort. Just be sure to let them know what is going on. They will do everything in their power to help. Maggie, you are a special person to take on this task. I'll venture to guess that you can't even imagine what a blessing you are to your brother-in-law and your sister in taking on this labor of love. Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted January 1, 2009 Share Posted January 1, 2009 Hey Sweet Maggie, I am so glad you were able to get to this site. It has been a "godsend" to me and I love everyone here. I hope you can find the answers that will help BIL during this journey. Here is the link to the Grace index: http://cancergrace.org/forums/ Please remember that I am just a phone call away. I feel so blessed that your family has become a part of my life. I'm just so sorry it happened this way. We will be praying for you guys every day! xoxo Jamie Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 1, 2009 Share Posted January 1, 2009 Maggie, one other thought concerning the anxiety. Is your BIL on supplemental oxygen now? Since he was on a ventilator in the hospital for a while, it seems likely that his lung function is compromised and he may feel short of breath even now. It's one thing to be short of breath when walking — you can always stop and rest for a while. But if you're short of breath in bed doing essentially nothing, that can be terrifying, as I'm sure you can imagine. Or if he is on oxygen currently, maybe the flow needs to be increased. Do you have a means of checking his oxygen saturation? (It's typically measured with a little gadget clipped to a finger.) Ned Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 1, 2009 Share Posted January 1, 2009 Maggie, here are some messages on another site regarding excessive mucous and some things that helped: http://www.cancercompass.com/message-bo ... 2735,0.htm We had one of those suction machines at home when my wife was end-of-life caregiver for her father about 12 years ago. He didn't have cancer, but did have a major problem with aspiration, resulting in pneumonia on a number of occasions. In his case, the machine was prescribed by his doctor and covered by Medicare. Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 1, 2009 Share Posted January 1, 2009 Maggie, I agree with others on this site that you are a very special person to be caretaking your BIL. I think the reason some doctors try to pooh pooh anxiety is because it is difficult to nail down and therefore difficult to treat. Ned has a good suggestion about shortness of breath, and Lynn about adding a second medication to assist the ativan. If you experience something terrifying, anything even resembling that event can trigger anxiety. Anxiety used to be define as "free floating fear." Because of that, I found many people who insisted it came from nowhere and was attached to nothing. I personally do not believe that's true. You said he won't talk to anyone because he's so anxious and not talking about his fears will in fact increase his anxiety. If he talks at all, try to listen carefully. You are trying so hard to fix something you can't fix but sometimes just listening and hearing something you can reflect back to that person can work wonders. Being heard and understood and not judged for what you are feeling could perhaps make your BIL rest a little easier. If he can't say he's afraid, tell him you think he's probably really afraid, anyone in his situation would be. But Maggie, there are people who can help. I think you will find great comfort in hospice. Keep us informed as to how things are going, o.k. Judy in Key West Quote Link to comment Share on other sites More sharing options...
MaggieforBIL Posted January 2, 2009 Author Share Posted January 2, 2009 Hello to all that was so kind as to respond to me about my brother-n-law. I sat down on the computer today to type a quick response to all of your posts but all in one post from me. About halfway through, I suddenly had to run to BIL's side. And then I had to call the hospice nurses once his oxygen levels went down to 60, and that was with him on the oxygen machine. I called my sister and got her here, as she was out trying to give some quality tine to her boys. And about an hour later, with the hospice nurse, the counselor they provided and nyself and ny sister at his side, he finally was able to let go and rest. He took his last breath in a very peaceful and calm way. He finally had let go of all of his fear in the past 24 hours. And I have to tell you Jamie on this site was of the greatest support to my family that we could have ever dreamed of. My sister is absolutely heart broken, but I was relieved, as well as my sis that Hospice was here when it happened. What a wonderful organization. And Jamie was an angel that came into our lives and helped us with easing my BIL, setting up a major support system for our famiky as well as so much she did over the holidays for ny family. So thank you to Jamie and to the wonderful suggestions and responses. I hope this does not scare anyone that has recently been diagnosed. My BIL was so far along by the time he had gotten diagnosed and lost so much weight, that he was not strong enough to fight this fight. And although this just happened earlier this evening (I think about 5 or 6 maybe, no clue), I know the poor man is much more comfortable as he was really suffering. I learned that there are steps once you reach the dying process and BIL was text book. But I am impressed to see all the wonderful survivors posting on this site. Thanks to all of you wonderful and extremely compassionate and empathetic angels. God Bless you and have a wonderful New Year. Maggie Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted January 2, 2009 Share Posted January 2, 2009 Oh Maggie, I am so sorry for your loss. I did not even get a chance to give you a proper welcome and he's gone already. My condolences to you and your family. Denise Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 2, 2009 Share Posted January 2, 2009 Oh Maggie. I am so sorry for all you have been through and your loss. My condolences to all involved. God bless all at this difficult time. Sandra Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 2, 2009 Share Posted January 2, 2009 Maggie I am so sorry for your loss. I still say you are an angel for going and helping this family during this time of crisis. I am also glad that Hospice was there also for more support. Your brother in law is well and at peace now. I send a big hug to you and his family for this time is hard for those left behind. Donna G Quote Link to comment Share on other sites More sharing options...
Bruce u Posted January 2, 2009 Share Posted January 2, 2009 Maggie I too am sorry for your loss. It was so nice of you to help your sister, BIL, and kids when they really needed you. I am sure it is a difficult time for everyone. Take care. Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted January 2, 2009 Share Posted January 2, 2009 ((((Maggie)))) Please accept my deepest condolences. Lynn Quote Link to comment Share on other sites More sharing options...
Wendy Posted January 2, 2009 Share Posted January 2, 2009 Maggie, My sincere sympathy for the loss of your bil. Prayers to you and yours. Wendy Quote Link to comment Share on other sites More sharing options...
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