Cancer sucks!
My brother was running a fever a couple of weeks ago and had black, tarry stools. My sister took him to the ER under the condition that they didn't admit him to the hospital. He decided that he doesn't want to be hospitalized anymore or have any major testing done. They ran tests but everything came back as they expected. His white count was 23,000 but stools negative for blood. They wanted to give him IV fluids and antibiotics, but he said no. The doctor told him there wasn't anything he could do for him and sent him home. My brother made it very clear to everyone who would listen that he wanted to die at home and wanted to die peacefully. He told the doctor he was ready. The dr said my brother was starting the process of dying. At this point he was still alert and he was still able to go out to eat, he just needed a little help keeping him steady. We called his doctor and asked her to order him a walker.
Tuesday he took a turn for the worse. His nurse called and said he was in bad shape. My brother had soiled himself and was incoherent. My sister and I went over to the apartment. The nurse met us outside the front door and told us he was bad. We walked into the house to find that my dad tried to help him to the bathroom. My brother fell in the tub and banged his head. We got him out but he was out of it. His temp was 103.5 and he couldn't stand or even sit without assistance. His head was wobbly and he couldn't hold it up. My sister and I held him up while his nurse cleaned him up and changed him. We got him back to bed and managed to give him tylenol. He fell asleep. My sister and I decided that we'd take turns staying the night. During the night his fever broke and by morning he had occasional times when he was lucid. We contacted his palliative nurse and asked her if she could get hosppice in. The next morning a hospital bed arrived with assorted other things. The following day hospice arrived. During the time we were there, he was bedriiden and we had to sponge bathe him and chage his diapers. He no longer has control of his bowels. As he became lucid here and there and gained a little strength, he insisted that he wanted to use the bathroom. I wanted to let him have whatever dignity he had left, so I told him we would try. I used the rolling chair to get him to the bathroom and helped him onto the toilet. This seemed to work for the time being, but was killing my sister's back. Hospice was giving him an aide for 4 hours a day, but that wasn't going to be enough. We spoke to dad and the three of us decided to hire a live-in aide. It was becoming emotionally and physically draining on both me and my sister. We didn't want dad to wake up to find him gone. so the live-in seemed like our best option. He started on Friday and seems to be doing a great job. My only complaint is he's from Africa and has a thick accent, so he's hard to understand. Hopefully we'll get used to his accent and communication will be easier. He is very caring and compassionate. I finally was able to sleep. Today I have to head over there to get a shopping list and do food shopping, as well as pick up supplies.
I called his oncologist and asked her how long she thought he had. She, of course, told me there's no way she can give me an accurate time, but her guess is less than a week. Maybe I'm delusional, but I don't think it's going to happen that fast.
What can any of you tell me about what I can expect?
The live-in is costing a small fortune. Medicare is covering 4 hours but we pay the rest, which is $1200 a week. Do any of you know if Medicaid will kick anything in? They said they would check on that this week.
I'm sad, tired and angry right now. My brother doesn't deserve this! 
Comments
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I'm so sorry you and your
I'm so sorry you and your family is gong through this. I have no advice, I'm sorry. My brother chose to pass at home but we live in Canada and there were more options paid for by the government than you guys have in the states. I'm assuming that's where you are. And he and my sister-in-law had good private coverage through work as well.
For what it's worth, when I was in the hospital last year for so long one of my favourite nurses was African and had quite an accent. He was the best one there. I adored him. He was always upbeat and took everything in stride and was so encouraging. He and a young Chinese guy were the two best ones. I hope your brother gets the best care possible and you're able to give evryone peace of mind during this horrible time. Sending you hugs.
Jan
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My Thoughts With You
I am so sorry you have to go through this. I have gone through it a few times including with my father. He did not have cancer, but another issue. Hospice was called and basically we stayed with him for about five days. The day he passed away was his best day, he was the most lucid and in good shape. It is cliche, but the times I have gone through this, there always seems to be a good day or so before my family member passed away. He had many friends stop by his last day, and he was conversational.
Based on everything you have said here, there is no doubt you are tremendous in your love and caring. The only thing I can say is to try to make the best of the time. Try to make sure everything you would like to say to him is said. It is for you as his family as much as for him. The night before my Dad passed away, when everyone was away, I went upstairs after I had got him to bed. Went downstairs and was going to go home, but decided to go back upstairs. He was in pretty good shape. We spoke for a couple of moments, and I told him I loved him. He had a huge smile. (Being two males, sometimes we do not say things like that too much.) And I am so thankful for those moments.
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Damn!
I hate this part of it all.
I am so heartbroken for you. This is not an easy stage, and sadly, it can go on for many days and even weeks. You NEVER EVER want your loved one to pass, but then....you do, because these last days can be so painful and rough and you don't want to see them suffer. It is a time of emotional turmoil for you and physical turnoil for your brother.
I know a couple of caregivers here, Wolfen, Linda to name a few, have watched their loved one pass, so hopefully someone can post who knows just what to say, because I'm only coming from the patient side of things.
Just know that I am praying for your brother, for you and your dad and for your sister. Your poor dad will be so lost without his beloved son. Oh, my heart aches for the unfairness of it all.
God bless you, friend.
SUE
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Went through it with my wife
Went through it with my wife Cindy and it's an awful time. I wheeled and lifted her because she wanted to use the bathroom as well. A hospice nurse came every other day then all the weekdays to bathe her and change the bed, it was a big help. My son and his girl friend took care of her when I had work, and my daughter stepped in when my son went with me, so I had good support. The end really began when she stopped eating, maybe with two weeks left, then she stopped drinking and was out mostly, unresponsive for the last week. I continued her liquid morphine every two hours to ensure there was no discomfort, but it was probably unnecessary. This was with a brain tumor, so I can't say if the pattern will be similar, but the stuff you've mentioned is familiar. MediCal [medicaid] in Cali. pays for a home care worker, but I don't know the particulars. I hope this helps, because reliving it is still a painful thing, and of course you're right, there isn't a damn thing fair about any of it.............................Dave
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Prayers are with you all
As your brother's doctor told you it is difficult to know how long. For my sister, she went to her Onc. on Monday and fell at home. Tuesday we brought Hospice in. She began sleeping more by Wed. By Thursday night she was not able to take tablet meds, so Hospice had liquid meds on hand for us. By Friday early morning she was gone. While it all seemed rather quick to those of us she left behind, we were grateful that she did not suffer in those last days.
I just searched the internet to find out what to expect once be brought Hospice in. The following gives you a number of sites to check out
http://www.cancer.org/search/index?QueryText=what+to+expect+near+death&Page=1
If they put him on oxygen, make sure they also add a mister to keep from drying out the nasal passages...we didn't know this and it caused sister to have nose bleed near the end. May sound silly to worry about it, but we wanted her to be comfortable.
Once she no longer opened her eyes, one of us sat by her bed and gently stroked her hand and wiped her forehead with a cool cloth. No one knows for sure if they can hear you speak, but assume they can. Say only comforting things within their normal hearing range.
Her breating came less often. Once it was obvious there would be no further breaths, I called Hospice who came to pronounce her. The mortuary came soon after they were called.
I pray that your brother can go peacefully into the light.
May each of you receive help, support and love at this difficult time.
Marie who loves kitties
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Lyn
I am so sorry. Your brother has had such and long and difficult fight with you always by his side.
As you know, I was with Ron and Debbie as each left this earth.
Ron had sepsis for a month and had been hospitalized. Six days before he passed, he aspirated into his lungs and was intubated. All of his organs were failing and he was heavily sedated. In his waking moments, he recognized all of us but couldn't speak because of the breathing apparatus. He progressively grew worse and there was no hope he would recover. All machines were removed, his pacemaker was turned off and he was put on a temporary vent to be transported home. He was basically comatose, but kept free from pain. The portable vent was removed, he sat up and said "I'm alive". He immediately fell back and never woke again. It was expected he would expire in a couple of hours. He took one less breath every hour for 19 more until his last. I guess that is a "peaceful" death.
Debbie started to fail three weeks before she left. She ate and drank very little and could not get around without assistance. She relented to having a pain pump and was heavily medicated, but nothing seemed to stop the pain. One morning I could not wake her up and called Hospice. The nurse said she would not make it through the weekend. She was wrong. Many days she was incoherent, violent and did not recognize us. She could no longer eat or drink. We moistened her lips with some q-tip type things that were provided. Her pain became progressively worse no matter how much medicine she was given. A day before she passed, she looked up and said "I just love life". My heart broke for her. On her last day, she screamed continually and convulsed most of the day. Her Hospice was not fit for a dog, much less humans. She finally slipped into sleep and death. Her death was definitely not peaceful. I relive it in my mind constantly.
I hope this was not too graphic for you. This does certainly not mean that your brother will have the same experience. The main thing is to keep him comfortable and free from pain. I'm sure he know how much you love him. I'm glad his aide is such a caring and compassionate person.
Karen
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My heart is breaking for you still, Karenwolfen said:Lyn
I am so sorry. Your brother has had such and long and difficult fight with you always by his side.
As you know, I was with Ron and Debbie as each left this earth.
Ron had sepsis for a month and had been hospitalized. Six days before he passed, he aspirated into his lungs and was intubated. All of his organs were failing and he was heavily sedated. In his waking moments, he recognized all of us but couldn't speak because of the breathing apparatus. He progressively grew worse and there was no hope he would recover. All machines were removed, his pacemaker was turned off and he was put on a temporary vent to be transported home. He was basically comatose, but kept free from pain. The portable vent was removed, he sat up and said "I'm alive". He immediately fell back and never woke again. It was expected he would expire in a couple of hours. He took one less breath every hour for 19 more until his last. I guess that is a "peaceful" death.
Debbie started to fail three weeks before she left. She ate and drank very little and could not get around without assistance. She relented to having a pain pump and was heavily medicated, but nothing seemed to stop the pain. One morning I could not wake her up and called Hospice. The nurse said she would not make it through the weekend. She was wrong. Many days she was incoherent, violent and did not recognize us. She could no longer eat or drink. We moistened her lips with some q-tip type things that were provided. Her pain became progressively worse no matter how much medicine she was given. A day before she passed, she looked up and said "I just love life". My heart broke for her. On her last day, she screamed continually and convulsed most of the day. Her Hospice was not fit for a dog, much less humans. She finally slipped into sleep and death. Her death was definitely not peaceful. I relive it in my mind constantly.
I hope this was not too graphic for you. This does certainly not mean that your brother will have the same experience. The main thing is to keep him comfortable and free from pain. I'm sure he know how much you love him. I'm glad his aide is such a caring and compassionate person.
Karen
I am so very, very sorry that Debbie's last weeks were so very horrendous, and therefore yours also (and her family). I remember you posting that one day you would share her passing, and knew then that it had been a terribly traumatic time.
I really am so heartbroken that anyone has to suffer so much at the end of their lives. I do not understand it at all. It tests my faith to the point of not believing.
I wish I could reach through the computer and hug you.
I wish that someday, soon, you will find a peace that will help you put your lovely daughter's suffering ....not aside, but in a place where you can live with it without reliving it.
Sue
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I'm sorry as well, Karen,
I'm sorry as well, Karen, that Debbie's last moments were so hard. Controlling Cindy's pain medicine was the one part of home hospice I was most grateful for, and had Cindy shown any real suffering, I'd saved enough to give it to her beyond any dosage rate. I didn't have to, but I knew if she was in a facility, those in control would have protected their liability regardless of Cindy's pain level. I hope someday medical care evolves to the point where the only last consideration is the patient's comfort, so endings can be peaceful for everyone..............................................Dave
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Thanks!MS2014 said:So sorry to hear such bad news
I'm so sorry to read all that about your brother. I don't even know what to write.
I feel so sorry for your brother and family.
I appreciate all your support. How's mom?
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LOLJanJan63 said:I'm so sorry you and your
I'm so sorry you and your family is gong through this. I have no advice, I'm sorry. My brother chose to pass at home but we live in Canada and there were more options paid for by the government than you guys have in the states. I'm assuming that's where you are. And he and my sister-in-law had good private coverage through work as well.
For what it's worth, when I was in the hospital last year for so long one of my favourite nurses was African and had quite an accent. He was the best one there. I adored him. He was always upbeat and took everything in stride and was so encouraging. He and a young Chinese guy were the two best ones. I hope your brother gets the best care possible and you're able to give evryone peace of mind during this horrible time. Sending you hugs.
Jan
Yes, we are in NY. My brother told me his aide is his brother now! He is very happy with the care he is being given and so is the whole family. The more I'm around my new brother, the more I understand him.
I'm very disappointed in what is covered. Unfortunately, his aide isn't covered by Medicaid, only Medicare. But the care he is being given is worth every penny.
My brother had a bad night last night. This should make you chuckle, though. The aide said my brother was up 15 times with the runs. The hospice nurse was pushing us today to put him in a hospice outside the home, but his aide told us that he only told us because it's part of his job to let us know how he's doing. He told me my dad made my brother a chicken sandwich and my brother poured hot sauce on it. He loves hot sauce! That's what gave him the runs. He doesn't always eat, so dad let him have what he wanted. My sister is going to spend the night tonight to let the aide get some sleep. His aide is one of the kindest men I've ever met.
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Thank you for sharing that!NewHere said:My Thoughts With You
I am so sorry you have to go through this. I have gone through it a few times including with my father. He did not have cancer, but another issue. Hospice was called and basically we stayed with him for about five days. The day he passed away was his best day, he was the most lucid and in good shape. It is cliche, but the times I have gone through this, there always seems to be a good day or so before my family member passed away. He had many friends stop by his last day, and he was conversational.
Based on everything you have said here, there is no doubt you are tremendous in your love and caring. The only thing I can say is to try to make the best of the time. Try to make sure everything you would like to say to him is said. It is for you as his family as much as for him. The night before my Dad passed away, when everyone was away, I went upstairs after I had got him to bed. Went downstairs and was going to go home, but decided to go back upstairs. He was in pretty good shape. We spoke for a couple of moments, and I told him I loved him. He had a huge smile. (Being two males, sometimes we do not say things like that too much.) And I am so thankful for those moments.
My family was never one to say I love you. We show it, but never say it. I have made it a point to say it every time I speak with my children and grandchildren. You made me realize that I need to say it to him. I know he knows I love him. If I didn't, I wouldn't wipe his behind and drag my butt out of bed whenever he needs me. I've said this before and this I've told him, he's my hero.
Thank you for sharing your story.
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Thanks, Sue!Trubrit said:Damn!
I hate this part of it all.
I am so heartbroken for you. This is not an easy stage, and sadly, it can go on for many days and even weeks. You NEVER EVER want your loved one to pass, but then....you do, because these last days can be so painful and rough and you don't want to see them suffer. It is a time of emotional turmoil for you and physical turnoil for your brother.
I know a couple of caregivers here, Wolfen, Linda to name a few, have watched their loved one pass, so hopefully someone can post who knows just what to say, because I'm only coming from the patient side of things.
Just know that I am praying for your brother, for you and your dad and for your sister. Your poor dad will be so lost without his beloved son. Oh, my heart aches for the unfairness of it all.
God bless you, friend.
SUE
I appreciate your friendship. You always know the right thing to say. You can actually put a face to the person. (If I could figure out how to download a pic on this site, I would.) I don't put too much on my Facebook account because family members feel things like this should remain private.
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Thanks Dave!beaumontdave said:Went through it with my wife
Went through it with my wife Cindy and it's an awful time. I wheeled and lifted her because she wanted to use the bathroom as well. A hospice nurse came every other day then all the weekdays to bathe her and change the bed, it was a big help. My son and his girl friend took care of her when I had work, and my daughter stepped in when my son went with me, so I had good support. The end really began when she stopped eating, maybe with two weeks left, then she stopped drinking and was out mostly, unresponsive for the last week. I continued her liquid morphine every two hours to ensure there was no discomfort, but it was probably unnecessary. This was with a brain tumor, so I can't say if the pattern will be similar, but the stuff you've mentioned is familiar. MediCal [medicaid] in Cali. pays for a home care worker, but I don't know the particulars. I hope this helps, because reliving it is still a painful thing, and of course you're right, there isn't a damn thing fair about any of it.............................Dave
I found out that the agency hospice uses for home care doesn't accept Medicaid, only Medicare. My brother and dad love the aide and have grown very fond of him, so have I. We will figure a way to pay it.
My brother will eat one day and won't the next. He sleeps often but is off in his own world more often. I appreciate everything that has been done for my brother. Everyone has been so kind. I just wish it wasn't so expensive.
My family has been there everyday helping out. My sister is sleeping there tonight. My childen have been there to do whatever is necessary.
I'm glad you had a lot of support.
Thank you for sharing your experience.
Lin
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Thank you!Lovekitties said:Prayers are with you all
As your brother's doctor told you it is difficult to know how long. For my sister, she went to her Onc. on Monday and fell at home. Tuesday we brought Hospice in. She began sleeping more by Wed. By Thursday night she was not able to take tablet meds, so Hospice had liquid meds on hand for us. By Friday early morning she was gone. While it all seemed rather quick to those of us she left behind, we were grateful that she did not suffer in those last days.
I just searched the internet to find out what to expect once be brought Hospice in. The following gives you a number of sites to check out
http://www.cancer.org/search/index?QueryText=what+to+expect+near+death&Page=1
If they put him on oxygen, make sure they also add a mister to keep from drying out the nasal passages...we didn't know this and it caused sister to have nose bleed near the end. May sound silly to worry about it, but we wanted her to be comfortable.
Once she no longer opened her eyes, one of us sat by her bed and gently stroked her hand and wiped her forehead with a cool cloth. No one knows for sure if they can hear you speak, but assume they can. Say only comforting things within their normal hearing range.
Her breating came less often. Once it was obvious there would be no further breaths, I called Hospice who came to pronounce her. The mortuary came soon after they were called.
I pray that your brother can go peacefully into the light.
May each of you receive help, support and love at this difficult time.
Marie who loves kitties
I will take a look at those websites. I appreciate the fact that you found them for me.
My brother fell Tuesday. He was incoherent and had a high fever. Since then, he has gone downhill, with some days that he's lucid and others where he isn't eating and is out of it. He's up and down.
Thank you for sharing your experience with me. We have oxygen there, but it hasn't been necessary yet. He hasn't been in much pain, aside from the sore shoulder from the fall. I also hope he goes peacefully...
Marie, you were an awesome sister! Know that!
Lin
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Karen, I share your anger.wolfen said:Lyn
I am so sorry. Your brother has had such and long and difficult fight with you always by his side.
As you know, I was with Ron and Debbie as each left this earth.
Ron had sepsis for a month and had been hospitalized. Six days before he passed, he aspirated into his lungs and was intubated. All of his organs were failing and he was heavily sedated. In his waking moments, he recognized all of us but couldn't speak because of the breathing apparatus. He progressively grew worse and there was no hope he would recover. All machines were removed, his pacemaker was turned off and he was put on a temporary vent to be transported home. He was basically comatose, but kept free from pain. The portable vent was removed, he sat up and said "I'm alive". He immediately fell back and never woke again. It was expected he would expire in a couple of hours. He took one less breath every hour for 19 more until his last. I guess that is a "peaceful" death.
Debbie started to fail three weeks before she left. She ate and drank very little and could not get around without assistance. She relented to having a pain pump and was heavily medicated, but nothing seemed to stop the pain. One morning I could not wake her up and called Hospice. The nurse said she would not make it through the weekend. She was wrong. Many days she was incoherent, violent and did not recognize us. She could no longer eat or drink. We moistened her lips with some q-tip type things that were provided. Her pain became progressively worse no matter how much medicine she was given. A day before she passed, she looked up and said "I just love life". My heart broke for her. On her last day, she screamed continually and convulsed most of the day. Her Hospice was not fit for a dog, much less humans. She finally slipped into sleep and death. Her death was definitely not peaceful. I relive it in my mind constantly.
I hope this was not too graphic for you. This does certainly not mean that your brother will have the same experience. The main thing is to keep him comfortable and free from pain. I'm sure he know how much you love him. I'm glad his aide is such a caring and compassionate person.
Karen
Karen, I share your anger. My mom had a similar experience. i try to push it from my mind but it's really hard.
Lin, I'm so sorry to heat about your brother. He sure has had more than his share of pain and suffering. I hope he passes peacefully. My husband did. It truly was quick and peaceful. not because of hospice but his nurses that knew him so well and truly cared made sure he didn't not suffer.
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wow!wolfen said:Lyn
I am so sorry. Your brother has had such and long and difficult fight with you always by his side.
As you know, I was with Ron and Debbie as each left this earth.
Ron had sepsis for a month and had been hospitalized. Six days before he passed, he aspirated into his lungs and was intubated. All of his organs were failing and he was heavily sedated. In his waking moments, he recognized all of us but couldn't speak because of the breathing apparatus. He progressively grew worse and there was no hope he would recover. All machines were removed, his pacemaker was turned off and he was put on a temporary vent to be transported home. He was basically comatose, but kept free from pain. The portable vent was removed, he sat up and said "I'm alive". He immediately fell back and never woke again. It was expected he would expire in a couple of hours. He took one less breath every hour for 19 more until his last. I guess that is a "peaceful" death.
Debbie started to fail three weeks before she left. She ate and drank very little and could not get around without assistance. She relented to having a pain pump and was heavily medicated, but nothing seemed to stop the pain. One morning I could not wake her up and called Hospice. The nurse said she would not make it through the weekend. She was wrong. Many days she was incoherent, violent and did not recognize us. She could no longer eat or drink. We moistened her lips with some q-tip type things that were provided. Her pain became progressively worse no matter how much medicine she was given. A day before she passed, she looked up and said "I just love life". My heart broke for her. On her last day, she screamed continually and convulsed most of the day. Her Hospice was not fit for a dog, much less humans. She finally slipped into sleep and death. Her death was definitely not peaceful. I relive it in my mind constantly.
I hope this was not too graphic for you. This does certainly not mean that your brother will have the same experience. The main thing is to keep him comfortable and free from pain. I'm sure he know how much you love him. I'm glad his aide is such a caring and compassionate person.
Karen
Karen, my heart breaks listening to your experience with Debbie. I am so sorry. Thank you for sharing your experience with us.
My brother doesn't have pain, but he is eating very little. Some days he eats, others he doesn't. Some days he's more lucid than others. His oncologist was guessing at the time he had left, according to the information she had.
I appreciate your thoughts and words. This must have been difficult to rehash, I am so sorry. I know you've been through so much already.
I can only pray that he slips away peacefully.
Lin
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Amen!beaumontdave said:I'm sorry as well, Karen,
I'm sorry as well, Karen, that Debbie's last moments were so hard. Controlling Cindy's pain medicine was the one part of home hospice I was most grateful for, and had Cindy shown any real suffering, I'd saved enough to give it to her beyond any dosage rate. I didn't have to, but I knew if she was in a facility, those in control would have protected their liability regardless of Cindy's pain level. I hope someday medical care evolves to the point where the only last consideration is the patient's comfort, so endings can be peaceful for everyone..............................................Dave
I wish the same thing.
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Thanks Jen!jen2012 said:Karen, I share your anger.
Karen, I share your anger. My mom had a similar experience. i try to push it from my mind but it's really hard.
Lin, I'm so sorry to heat about your brother. He sure has had more than his share of pain and suffering. I hope he passes peacefully. My husband did. It truly was quick and peaceful. not because of hospice but his nurses that knew him so well and truly cared made sure he didn't not suffer.
I am hoping that he slips away peacefully.
I am very happy with his aide, but I truly feel that the insurance should be covering more.
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Thank You
A big hug and thank you to each one of you. After I wrote that horrendous account, I felt bad and thought perhaps I should have written a PM to Lin instead. I never want to frighten or discourage a "newbie". Unfortunately, Cancer does not "sugar coat" anything.
I often wonder if the cancer had gone to her brain. She was never a violent person, yet had the strength of 10 men when agitated. One day, she pulled off my glasses trying to snap them in half. She had no idea who I was. She managed to rip out her catheter with 3 of us trying to prevent it. She was not my Debbie, only a wounded animal fighting for her life.
These years have been the hardest ones in my long life I have ever endured. My grief is endless. Ron has been gone for 3+ years and Debbie for 2 on the 27th of this month. Most days it is hard to move forward, but I do so in their honor.
Did not mean to hijack your post, Lin.
Peace to all of you.
Luv,
Wolfen
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