Susan

go with your heart-

Have you been in touch with a social worker? They are often a wealth of information regarding home health visits- so that you have help-The hospice nurses should be able to give you info on different community services that might help-(they usually know waht medicare will pay for or private insurance if he has it) As far as work goes- can't you talk to your boss and take a few days off..... It all seems overwhelming right now but it will work out- We had Rachel at home- her hospital bed was set up in the livingroom so that she was in the middle of everything going on - (we didn't want her to be feel removed) - it made it nice for visitors too- Take a deep breath, count to ten- this will all work out-

bon Voyage!!!!

I agree with everyone- this is a normal response to a sucky situation ! You must take care of yourself - Some good therapy: go out and buy about 6 dozen (or more...) eggs and take them someplace that is rocky ( I went to the beach....) and throw them as hard as you can agaisnt the rocks...- it sounds corny but I found it to be very therapeutic!

First let me say that I am so sorry that you have to go through this at all but I am so glad that you are hooked up with this group- everyone here brings a great deal of knowledge and support- it is incredible - My personal belief is that if you feel the need to cry and tell a loved one that you love him before he dies then go for it! There is not a day that goes by that I don't think of my Rachel and how much I miss her but if there is anything good to come from this dreadful disease it is that I had two years to tell my best friend in the world how much her friendship meant to me and how much I loved her. Many times these conversations were accompanied by tears streaming down both of our faces but it was important to me that she knew how I felt. We often take what we have for granted and therefore don't take enough time to tell those around us how we feel- I miss her everyday but have no regrets (i.e I should have called her last week when I thought about her, why didn't I tell her one more time that I loved her....I wish we could have laughed again about the pranks we pulled in high school...) because we went over all of that stuff in her final two years- There is a great book that I read while going through this with my best friend Rachel- It is called "Final Gifts" and was written by a couple of hospice nurses, Maggie Callanan and Patricia Kelley.I think you would find it helpful and comforting- Don't hold back what is in your heart-

I tried posting this a few days ago but do not see it- so here it is again - a letter from Doug's brother- He asked that i pass it along-it is a beautiful synopsis of his final days/hours-Please keep his family in your thoughts- Susan Hi Susan, I am afraid I have the bad news that everyone knew was coming, but hoped that some miracle would prevent. Doug died, very peacefully, very early Tuesday morning. He was feeling quite good, even up to the day he died, but just kept getting increasingly weak and tired. He was up and about, earlier in the day, coming out to join Nana and me in the living room. Throughout his journey, Doug has always been at home with his family and when his therapy ended last month he was able to continue living at home, with help from some wonderful people with Hospice. The hospice team was marvelous. It is truly wondrous that there are regular people who have the capacity and desire to ease a total strangers’ untrodden passage into death; and in the doing, become good and true friends. Doug had gone through several courses of chemotherapy, both with good results and a paucity of side effects. He did tell me that the one side effect that bothered him the most was flatulence. This just before we entered the cabin we would share for a week, on our trip up the Alaskan Inside Passage (I was just thrilled and told him his timing was impeccable). It is a good thing the weather was nice, and we could keep the sliding door to our balcony open for most of the trip. Throughout all of the chemotherapy and radiation therapy, Doug kept an attitude that was an inspiration to everyone who had contact with him. He was constantly upbeat, never falling into “funk”. Early on I was worried that he would not be able to maintain his good cheer and everything would suddenly crash, but it never did. To the last day of his life, Doug was more concerned about the rest of us, especially Mom, than himself. I never heard him bemoan his fate, except to the extent that he would not be there to help mom. Nana was his biggest concern, and before he left, he needed to know that everything had been arranged for her care and well-being. On the morning of his death, I had taken Nana to an assisted living facility which she loved and where she wants to move. I told Doug all about it and how much Nana loved it. This was the very last thing he had on his “to do” list. Doug had been on a slow decline since his last palliative radiation, just getting weaker, but not having any other significant symptoms. He was finding it harder and harder to care for Nana and the rest of us were stepping in to help more and more of the time, but he was still definitely in overall control. (I don’t think he fully trusted us to think of all her needs). Things were going along pretty well until the last weekend. By then he was noticeably weaker, and was getting confused at times. He no longer wanted to eat, but would still take the high calorie liquid supplements and juices. He spent most of his time in his room, but did not want to be in bed. He thought if he got into bed, he would never get up again. As it turned out, his instincts were correct. My routine had been to come over each evening and stay until about 11:00 pm. In the morning I would stop by on the way to work, to check on both Doug and Nana. Between my son Chad, my wife Barbara and myself, we had everything but the night covered. Nana was there at night and she would have called, if anything happened or if she needed help. With Doug’s sudden decline over the weekend, I made plans to stay at night, for as long as it was needed. Anticipating that I would be needed more, I had cut back my work hours, and I did not have to be to work until noon on Monday. It was that morning when Nana visited the assisted living facility that she loves. When Nana and I got back from the visit, I told Doug all about the place that we had just seen, and how much Nana liked it. This pleased Doug a great deal, but it was soon obvious that there had been a significant change in his condition. He allowed me to get him into bed and make him comfortable. He couldn’t swallow his pain medication any longer, so I switched him to liquid morphine. Around noon I left for work. Chad had taken over as Nana’s care provider several months prior to this, when Doug could no longer do all the things that were necessary for her care, and so he would be there to help Doug until I could get back. By the time I got to work, all I could think about was how Doug had suddenly declined. I knew I needed to get back as soon as possible. My co-workers were very kind and by the time I had seen the first 4-5 of my patients, they had switched the rest of them to their schedules, and I was able to get away. Doug was comfortable, but obviously going downhill at an ever increasing rate. He was sleeping most of the time, but he would wake up when you talked to him, still recognized everyone and could still tell me what he needed. I sat by his bedside and talked to him, while he listened and slept. It got progressively harder for him to talk, but he could still convey his wishes. The morphine was keeping him comfortable and he actually declined it several times. I was giving him some atropine, which made it easier for him to breathe. His breathing was getting more labored as the evening progressed, but he did not seem to notice, probably because the morphine and atropine were making him comfortable. All of the kids had come over during the day and had spent time with Doug. Barb had been in and out all day, but came over for several hours that evening and had a chance to spend about an hour alone with Doug. Nana was in and out of his room many times, and spent several long periods with him. Nana went to bed about 10:00, and Barb left about 11:00. After that it was just the three of us, Doug, Alle (the cat) and me. Alle slept next to him all night. About 2:30 in the morning Doug woke up. I had been sitting next to him, with his hand in mine, reminiscing about our childhood and other stories from over the years. He would respond to me if I asked him a question, but with his eyes only opened slightly. This time his eyes were wide open. He looked at me and when I told him Alle was next to him, he looked at her and touched her. For several minutes he was looking around the room, and at Alle and me. It seemed as though he was seeing things that I could not see. As he looked around the room, he had a peaceful, sort of quizzical look on his face. We had squeezed each others hand many times in those last hours, but suddenly he squeezed harder, and as he was looking at me, he tried to say something, but no words came out. It looked like he said, “I’m ready”, but I wasn’t sure. I leaned very close to his face, our noses almost touching. I held his face lightly between my hands and asked him what he was trying to tell me. Gently, his breathing began to slow, and after four or five progressively slower breaths, his breathing stopped altogether. It was so natural and easy, it didn’t seem at all unusual for Doug to die with my hands holding his face, but more like the way Doug wished it to happen. By then our foreheads were touching and I gently talked to “my brother”. I don’t think I moved for the next fifteen minutes, but just sat there with his head in my hands and the rest of him in my heart, and quietly talked to him. Both of us were relaxed and at peace. Alle was curled up next to him, where she stayed the rest of the night. I sat there with Doug and Alle, sometimes talking and sometimes quiet, until Nana woke up several hours later. It was a special time. We talked about a lot of things, Doug and I. I know that you and Doug had something special between you. He spoke of you often and with great affection. He was so happy about your engagement and your happiness. Remember him fondly. Don R. Russell PS. Would you please send the message about Doug to all the members of his support group.

I recieved this moving letter from Doug's brother Don today- he asked that I pass on the news- although everyone has heard about Uncle Dougs passing I thought you might like to read Don's letter- It reflects Uncle Dougs wonderful nature- right up to the end- I know that Don and the rest of the family are in everyon's thoughts- thank you !! Hi Susan, I am afraid I have the bad news that everyone knew was coming, but hoped that some miracle would prevent. Doug died, very peacefully, very early Tuesday morning. He was feeling quite good, even up to the day he died, but just kept getting increasingly weak and tired. He was up and about, earlier in the day, coming out to join Nana and me in the living room. Throughout his journey, Doug has always been at home with his family and when his therapy ended last month he was able to continue living at home, with help from some wonderful people with Hospice. The hospice team was marvelous. It is truly wondrous that there are regular people who have the capacity and desire to ease a total strangers’ untrodden passage into death; and in the doing, become good and true friends. Doug had gone through several courses of chemotherapy, both with good results and a paucity of side effects. He did tell me that the one side effect that bothered him the most was flatulence. This just before we entered the cabin we would share for a week, on our trip up the Alaskan Inside Passage (I was just thrilled and told him his timing was impeccable). It is a good thing the weather was nice, and we could keep the sliding door to our balcony open for most of the trip. Throughout all of the chemotherapy and radiation therapy, Doug kept an attitude that was an inspiration to everyone who had contact with him. He was constantly upbeat, never falling into “funk”. Early on I was worried that he would not be able to maintain his good cheer and everything would suddenly crash, but it never did. To the last day of his life, Doug was more concerned about the rest of us, especially Mom, than himself. I never heard him bemoan his fate, except to the extent that he would not be there to help mom. Nana was his biggest concern, and before he left, he needed to know that everything had been arranged for her care and well-being. On the morning of his death, I had taken Nana to an assisted living facility which she loved and where she wants to move. I told Doug all about it and how much Nana loved it. This was the very last thing he had on his “to do” list. Doug had been on a slow decline since his last palliative radiation, just getting weaker, but not having any other significant symptoms. He was finding it harder and harder to care for Nana and the rest of us were stepping in to help more and more of the time, but he was still definitely in overall control. (I don’t think he fully trusted us to think of all her needs). Things were going along pretty well until the last weekend. By then he was noticeably weaker, and was getting confused at times. He no longer wanted to eat, but would still take the high calorie liquid supplements and juices. He spent most of his time in his room, but did not want to be in bed. He thought if he got into bed, he would never get up again. As it turned out, his instincts were correct. My routine had been to come over each evening and stay until about 11:00 pm. In the morning I would stop by on the way to work, to check on both Doug and Nana. Between my son Chad, my wife Barbara and myself, we had everything but the night covered. Nana was there at night and she would have called, if anything happened or if she needed help. With Doug’s sudden decline over the weekend, I made plans to stay at night, for as long as it was needed. Anticipating that I would be needed more, I had cut back my work hours, and I did not have to be to work until noon on Monday. It was that morning when Nana visited the assisted living facility that she loves. When Nana and I got back from the visit, I told Doug all about the place that we had just seen, and how much Nana liked it. This pleased Doug a great deal, but it was soon obvious that there had been a significant change in his condition. He allowed me to get him into bed and make him comfortable. He couldn’t swallow his pain medication any longer, so I switched him to liquid morphine. Around noon I left for work. Chad had taken over as Nana’s care provider several months prior to this, when Doug could no longer do all the things that were necessary for her care, and so he would be there to help Doug until I could get back. By the time I got to work, all I could think about was how Doug had suddenly declined. I knew I needed to get back as soon as possible. My co-workers were very kind and by the time I had seen the first 4-5 of my patients, they had switched the rest of them to their schedules, and I was able to get away. Doug was comfortable, but obviously going downhill at an ever increasing rate. He was sleeping most of the time, but he would wake up when you talked to him, still recognized everyone and could still tell me what he needed. I sat by his bedside and talked to him, while he listened and slept. It got progressively harder for him to talk, but he could still convey his wishes. The morphine was keeping him comfortable and he actually declined it several times. I was giving him some atropine, which made it easier for him to breathe. His breathing was getting more labored as the evening progressed, but he did not seem to notice, probably because the morphine and atropine were making him comfortable. All of the kids had come over during the day and had spent time with Doug. Barb had been in and out all day, but came over for several hours that evening and had a chance to spend about an hour alone with Doug. Nana was in and out of his room many times, and spent several long periods with him. Nana went to bed about 10:00, and Barb left about 11:00. After that it was just the three of us, Doug, Alle (the cat) and me. Alle slept next to him all night. About 2:30 in the morning Doug woke up. I had been sitting next to him, with his hand in mine, reminiscing about our childhood and other stories from over the years. He would respond to me if I asked him a question, but with his eyes only opened slightly. This time his eyes were wide open. He looked at me and when I told him Alle was next to him, he looked at her and touched her. For several minutes he was looking around the room, and at Alle and me. It seemed as though he was seeing things that I could not see. As he looked around the room, he had a peaceful, sort of quizzical look on his face. We had squeezed each others hand many times in those last hours, but suddenly he squeezed harder, and as he was looking at me, he tried to say something, but no words came out. It looked like he said, “I’m ready”, but I wasn’t sure. I leaned very close to his face, our noses almost touching. I held his face lightly between my hands and asked him what he was trying to tell me. Gently, his breathing began to slow, and after four or five progressively slower breaths, his breathing stopped altogether. It was so natural and easy, it didn’t seem at all unusual for Doug to die with my hands holding his face, but more like the way Doug wished it to happen. By then our foreheads were touching and I gently talked to “my brother”. I don’t think I moved for the next fifteen minutes, but just sat there with his head in my hands and the rest of him in my heart, and quietly talked to him. Both of us were relaxed and at peace. Alle was curled up next to him, where she stayed the rest of the night. I sat there with Doug and Alle, sometimes talking and sometimes quiet, until Nana woke up several hours later. It was a special time. We talked about a lot of things, Doug and I. I know that you and Doug had something special between you. He spoke of you often and with great affection. He was so happy about your engagement and your happiness. Remember him fondly. Don R. Russell PS. Would you please send the message about Doug to all the members of his support group.

Cindy- I have not been on very much lately and isn't it wonderful to "check" in and see such wonderful news- five years- that is great !!!! Here is to five more !!!

Cindy- Thoughts and prayers to you, Tom and family

That is great Kimberly!

Hi All! I had an email from Doug in December and have not had a chance to respond yet (shame on me...) I JUST returned home after being on the east coast for 3 months and am getting caught up on the home front- Doug did tell me he was going to post an entry regarding he and his brother Don's trip to Alaska (Doug if you are reading this.........)and I like all of you are anxiously awaiting an Uncle Doug fix- I will email him today...... All of that aside- while back east I did get a chance to spend some time with Rachel's mom, dad, sister and brother which seemed to be good for all of us- her dad celebrated his 80th birthday New Years Eve- Katie- thank you so much for the pics of Rach at the picnic in Michigan- Stan shared them with me when I got home- he was very appreciative as am I.

Hi Char- Welcome to the forum ! You will find all kinds of support here. I couldn't help but cry in front of Rachel and it was OK-I later found out that it was good because it allowed her to cry too- she tried to be so strong most of the time and she needed to let it out just as your dad probably does.Hang in there, you are in all of our thoughts and prayers- we are here for you.

Joseppie, Welcome to the site. I too had a best friend of over 45 years who lost her battle with this dreadful disease a few months ago. I feel your pain and can assure you that you have come to the right place. This group has been offering me courage and support since July- I had been on the site with Rachel many times over the past few years but never actually had posted until then - she was very active and very much a part of this big family just as I feel part of it now, you will too. Again welcome and be sure to check out the other threads- they are all great- you might find the grieving thread helpful.

Donna, I know- I miss my Rachel too- she was my best friend for over 45 years....more like my twin ....she passed away in August and I cry all the time- I have come to realize that it is the way it is.....and will be until it isn't.... Sister Betty who did Rachel's service and who spent a lot of time with all of us before Rach passed once told us it was good to cry because it lets all the poisen out- I think she is right so I am gonna keep cryin 'til it's all gone !!! Bless you dear Donna-

Dear Shirley- I cna't thank you enough for this post !!! It is a wonderful story to share.

It has been 31/2 months since Rachel passed. THere are days when I can't believe it and other days when I think it was so long ago. I think I have done pretty well- but then Thanksgiving came....the first without her. Last year we all sat around her table giving thanks and enjoying the wonderful feast she had prepared for all of us- this year she was being missed... Now Christmas is coming, I can't do any shopping without wanting to buy her a present- finding something that I know she would love, any baking without thinking of how we always did these things together but....she is not here. I miss her sooooo much and can now only be thankful for the time we had together.It is a season that marks the first of the firsts for all of us who have lost a loved one this past year. May you all be blessed with wonderful memories this holiday season.

Doug ???? Where are youuuuuuu?????

Oh Pat- I'm sorry that Brian is having such a tough time- Have you tried moist heat- I have put a damp towel in the microwave and heated it up to place on the affected area- it helps sometimes- worth a try- Be careful to test the towel before placing it on the skin- it can get pretty hot and you don't want to burn him! You might want to place the towel in a plastic bag before placing it on his bare skin- hope it gives him some comfort- if nothing else it might be soothing enough to relax him a little......

Nancy- thank you so much for sharing that ! It is so inspirational to hear not only about a long term survivor but also soemone who you can reach out to - Just one more thing to be thankful for!!!!!!

Prayers for you and all of your family- You have a great attitude adn that accounts for a lot !!!

So sorry gale- prayers out to you and your family during this sad time.

Donna, so sorry about Mark- my deepest symapthy to you and yours at this time.

Thanks Ry !!

Heather, So sorry to hear about your mom. I know that this is a very trying time for you- be sure to take care of yourself too. Prayers to you and your mom sweetie-

How do I order one (or 10)???