What is the end like? I think my Dad is afraid

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chiefskid
chiefskid Member Posts: 9
edited March 2014 in Caregivers #1
My Dad has been battling colon cancer for about 3 and half years. December 21st, he had some sort of "episode" in the oncologist’s office. We thought is was a stroke. The doctor had just told my Mother and I that he was putting Dad on hospice and that he thought he had 2-3 weeks to live. The doc went in to tell my dad that he was stopping his treatment for a while but when he came out, he told us that he thought Dad had had a stroke. They sent him home in an ambulance and told us to get everyone home; he might not live through the night. Well, we had a Christmas miracle and he is still here, almost 5 weeks later! He had a brief rally and seemed better than he had for a couple on months. But we seem him betting weaker. He has no pain, is able to walk out to the kitchen for meals and use the bathroom. For those of you who have lost someone to colon cancer, what happens next? My mother says she feels like she is looking down the barrel of a loaded gun and there is nothing we can do. My Dad doesn't want to talk about the end, we don't want to bring it up and upset him. I think he is afraid of what dying might be like. When we knew he would not be cured, our prayers turned to prayers for mercy. We have been given that. Our family is close and this is breaking our hearts. How do we deal?

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  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
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    Dying
    How each family deals with a loved family member dying is as individual as the family. My husband passed away three months ago from colon cancer. He had bought time after a stage 4 diagnosis for 6 years. First, as you have learned drs. don't know how long a person has. They may make a guess based on their experience, but they don't know. Our dr. was honest enough to tell us that. My husband wanted to go to Yosemite one last time and stay at the Ahwanhee Hotel which was something we would not normally do because of the expense. We went with the help of our church which took up a bucket list collection. We got back on a Friday, and he passed away early the following Tuesday morning in his sleep. We knew he was failing much quicker the two weeks before his death. We had started using a walker or wheelchair even for short distances. One of the most telling incidents was when he fell and even with my help couldn't get up. I had to call the fire department for help. I alerted family and friends. We even had a couple of my husband's friends from out of state fly in. Those visits were the best gifts to my husband.

    As far as your father being afraid of what's to come, that seems pretty natural to me. We all fear the unknown. I know my husband's greatest fear was leaving me alone. I reassured him often that I was strong enough to carry on. Our sons, daughters-in-law and friends also promised to look after me. My husband had a very strong faith. That was a great comfort to him. He told me several times that he was going home. We told him that it was ok to let go when he was ready. Just a short time before he died, I told him it was ok for him to go toward the light. To him, death was not an unknown, so he didn't fear it.

    I can relate to your mother's feelings. We feel so helpless. I'm guessing that your parents have been married for quite awhile. We had been married for 42 years. Your being there for your mother is, I'm sure, a comfort for your father. I'm glad you are a close family. Ours is close, also. Our sons and families have helped me so much. I will pray for you as you go through this difficult time. In the final days of my husband, I prayed for a quick and peaceful passing. I knew how much he hated being helpless. For you and your family, I will pray for peace. Take care of yourself, too. As caregivers, we sometimes forget to do that. Fay
  • MIMI of 4
    MIMI of 4 Member Posts: 8
    #3
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    What Next?
    I would suggest using the hospice resources. Many include social workers that are experienced in End of Life counseling. Sometimes it is easier to talk with a someone that is not emotionally attached. This service would help your mother, you, and any other children also.
  • Barbara53
    Barbara53 Member Posts: 652
    #4
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    slow process
    It sounds like your Dad’s doctor thought the strokes would get him before the cancer, which happens a lot. He was wrong.

    As it is, death may come slow. That’s what I’m seeing with my mother, who is late stage ovarian. She gets weaker day by day, but unless you look carefully, it’s hard to see her decline clearly. Lately I’ve been going to Mom’s for a week or so (she lives alone), then home for a week or so, so I notice the nap times lengthening, appetite falling off, and other subtle signs of moving toward final rest. My brother takes over when I’m gone, and he notices little things that I don’t see. It all adds up to a process, which I’d like to rush along in the name of mercy, but it doesn’t seem to work that way. Lots of mysteries.

    I recently read Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life, by Maggie Callahan. Great little book. Seems like once comfort is assured, death can become a natural process that’s profoundly sad but not out and out scary. That’s how it was with my Dad (pancreatic cancer) and that’s how I hope it is for your Dad and my Mom, too.

    Toward the end with my father, when he was so weak I was afraid he might fall in the night and get both he and Mom in a fix, my three brothers took turns spending the night when I couldn’t be there. The two who initially questioned the idea, thinking things weren’t that bad, later said those were some of the most important nights of their lives. Just putting it out there. Bless your heart.
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    #5
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    Barbara53 said:

    slow process
    It sounds like your Dad’s doctor thought the strokes would get him before the cancer, which happens a lot. He was wrong.

    As it is, death may come slow. That’s what I’m seeing with my mother, who is late stage ovarian. She gets weaker day by day, but unless you look carefully, it’s hard to see her decline clearly. Lately I’ve been going to Mom’s for a week or so (she lives alone), then home for a week or so, so I notice the nap times lengthening, appetite falling off, and other subtle signs of moving toward final rest. My brother takes over when I’m gone, and he notices little things that I don’t see. It all adds up to a process, which I’d like to rush along in the name of mercy, but it doesn’t seem to work that way. Lots of mysteries.

    I recently read Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life, by Maggie Callahan. Great little book. Seems like once comfort is assured, death can become a natural process that’s profoundly sad but not out and out scary. That’s how it was with my Dad (pancreatic cancer) and that’s how I hope it is for your Dad and my Mom, too.

    Toward the end with my father, when he was so weak I was afraid he might fall in the night and get both he and Mom in a fix, my three brothers took turns spending the night when I couldn’t be there. The two who initially questioned the idea, thinking things weren’t that bad, later said those were some of the most important nights of their lives. Just putting it out there. Bless your heart.

    at that point
    I just talked to the dr. On Friday he will be telling Don and me that we need to talk to hospice. Don is getting worse each day, even though he's trying to keep things as normal as possible. I think he does know what is coming, but he needs to hear it from the dr.

    I don't know how he'll react to the suggestion of hospice. For myself in one way if they can make his throat and all the rest of him more comfortable and maybe help him sleep better, that will be good. In another I know our routine will change. And in a third I'm hoping I'll have someone to talk to about things. His kids are not nice (well, at least two are really not nice) and my family is totally unsupportive. There is just me and I have a full-time job.

    Don is so used to being independent and active. The cancer has slowed him down, weakened him and cut out a lot of activities, but he is still trying. I am hoping that the idea of hospice will not devestate him.

    and, yes, if he says he still wants to do more -- well, if he wants to, we will. I don't think the dr. will offer anything more from what he said to me. And I want Don to have days as normal and good as he can as long as he can, but it's his choice.

    Ruth
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
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    ruthelizabeth said:

    at that point
    I just talked to the dr. On Friday he will be telling Don and me that we need to talk to hospice. Don is getting worse each day, even though he's trying to keep things as normal as possible. I think he does know what is coming, but he needs to hear it from the dr.

    I don't know how he'll react to the suggestion of hospice. For myself in one way if they can make his throat and all the rest of him more comfortable and maybe help him sleep better, that will be good. In another I know our routine will change. And in a third I'm hoping I'll have someone to talk to about things. His kids are not nice (well, at least two are really not nice) and my family is totally unsupportive. There is just me and I have a full-time job.

    Don is so used to being independent and active. The cancer has slowed him down, weakened him and cut out a lot of activities, but he is still trying. I am hoping that the idea of hospice will not devestate him.

    and, yes, if he says he still wants to do more -- well, if he wants to, we will. I don't think the dr. will offer anything more from what he said to me. And I want Don to have days as normal and good as he can as long as he can, but it's his choice.

    Ruth

    Hospice
    Hearing that there is nothing more they can do and hearing the word hospice, is tough especially for someone who is trying so hard. It takes time to really sink in. Our hospice only did what we asked them to do. Our routine did not change except that they provided a little better pain control and answered questions. When we told them we were going to Yosemite the week before he died, about a three hour drive away, they offered encouragement. They arranged for us to get more portable oxygen. They also said if we needed them while we were gone that they would arrange for support in Yosemite. If and when you do decide to call in hospice, just be honest with them about your needs and concerns. They can also give you some additional support. I called several times with questions and concerns and always got immediate answers. Take care, Fay
  • Jezilone
    Jezilone Member Posts: 1
    #7
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    I think my Dad is afraid, too.
    My Dad was diagnosed with cancer on November 10, 2009. We soon found out that he had a "sketchy" cat scan in May 2002 that we were never told about when he was in for a urinary tract stricture. He ended up being officially diagnosed with bladder cancer. The oncologist made our visit short and sweet. He didn't offer a prognosis, or a "time" or anything, just treatment options. We didn't ask. We were both afraid I think then. The doc printed his old cat scan and subtly hinted about looking into it further. Now, I am battling this in my own way, I am so angry I can;'t stand it. My Dad on the other hand is quite optimistic. He thinks everything will be fine. He has bone mets on his spine and pelvis, mets in the lungs, adrenal glands...his last chemo did NO good, everything grew and spread. They started him on a new one, still no honest prognosis. My aunt, who works in oncology asked the doc for a straight answer. He says 3 months if this chemo WORKS. I am devastated, and Im wondering if I should try to get him to ask the same question, or tell him. Every time you bring up cancer, dying...he changes the subject. Though he has talked about preparing for funeral expenses, just in case and is wrapping things up with his sisters. I genuinely know he has no idea what a short time he has. I know he knows he's going to die, but I think hew believes he has a year or two. I'm devastated, I don't want to upset him. I just don't know what to do. I would appreciate ANY advice, or insight, or experiences shared with this... Thank you.
  • Barbara53
    Barbara53 Member Posts: 652
    #8
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    Jezilone said:

    I think my Dad is afraid, too.
    My Dad was diagnosed with cancer on November 10, 2009. We soon found out that he had a "sketchy" cat scan in May 2002 that we were never told about when he was in for a urinary tract stricture. He ended up being officially diagnosed with bladder cancer. The oncologist made our visit short and sweet. He didn't offer a prognosis, or a "time" or anything, just treatment options. We didn't ask. We were both afraid I think then. The doc printed his old cat scan and subtly hinted about looking into it further. Now, I am battling this in my own way, I am so angry I can;'t stand it. My Dad on the other hand is quite optimistic. He thinks everything will be fine. He has bone mets on his spine and pelvis, mets in the lungs, adrenal glands...his last chemo did NO good, everything grew and spread. They started him on a new one, still no honest prognosis. My aunt, who works in oncology asked the doc for a straight answer. He says 3 months if this chemo WORKS. I am devastated, and Im wondering if I should try to get him to ask the same question, or tell him. Every time you bring up cancer, dying...he changes the subject. Though he has talked about preparing for funeral expenses, just in case and is wrapping things up with his sisters. I genuinely know he has no idea what a short time he has. I know he knows he's going to die, but I think hew believes he has a year or two. I'm devastated, I don't want to upset him. I just don't know what to do. I would appreciate ANY advice, or insight, or experiences shared with this... Thank you.

    good old denial
    J, it sounds like good old denial to me. My Mom is doing the same things -- talking like she has a long time, but cleaning out closets like you would if you were winding things up. In other threads I've mentioned the book Final Gifts, by Maggie Callahan, which helps make sense out of things that don't add up. I found it at the library.

    In the last year of caring for Mom I've learned that there are times -- lots of them -- when truth doesn't count for a whole lot. Terminally ill people are entitled to decide for themselves what is true, even if it's not. Your Dad may know more than you think.
  • snugles
    snugles Member Posts: 6
    #9
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    Jezilone said:

    I think my Dad is afraid, too.
    My Dad was diagnosed with cancer on November 10, 2009. We soon found out that he had a "sketchy" cat scan in May 2002 that we were never told about when he was in for a urinary tract stricture. He ended up being officially diagnosed with bladder cancer. The oncologist made our visit short and sweet. He didn't offer a prognosis, or a "time" or anything, just treatment options. We didn't ask. We were both afraid I think then. The doc printed his old cat scan and subtly hinted about looking into it further. Now, I am battling this in my own way, I am so angry I can;'t stand it. My Dad on the other hand is quite optimistic. He thinks everything will be fine. He has bone mets on his spine and pelvis, mets in the lungs, adrenal glands...his last chemo did NO good, everything grew and spread. They started him on a new one, still no honest prognosis. My aunt, who works in oncology asked the doc for a straight answer. He says 3 months if this chemo WORKS. I am devastated, and Im wondering if I should try to get him to ask the same question, or tell him. Every time you bring up cancer, dying...he changes the subject. Though he has talked about preparing for funeral expenses, just in case and is wrapping things up with his sisters. I genuinely know he has no idea what a short time he has. I know he knows he's going to die, but I think hew believes he has a year or two. I'm devastated, I don't want to upset him. I just don't know what to do. I would appreciate ANY advice, or insight, or experiences shared with this... Thank you.

    i was thrilled to find this
    i was thrilled to find this site today. i was actually looking for a support group to deal with all of this but look at what we have here

    after my father batteling bladder cancer for the past 4 years he overcame that. did anyone ever tell you that bladder cancer causes lung cancer? our dr didnt. now my father was diagnosed with final stage4 inoperable lung cancer.

    i just told my friend the other day...i hold up better when i with him because i stay strong, mother him and we still laugh like crazy...the one thing that will take me to my breaking point is if he ever says hes afraid. so i am determined to do my best to prevent him from feeling that way. keep things as normal as i can...eventhough EVERYTHING has changed in all of our lives and normal days are completly gone.

    jezi...if your father is doing things that seem like taking care of loose ends...its porbably more ok than you think to talk about things. just be aware of the right timing. like when he mentions something he took care of or you see him cleaning something out.

    it's very obvious that my father shuts things out and he says very directly that he doesnt retain 2 words any of the things the drs or nurses say. so i keep a binder, his own medical file persay, with all details, meds, schedules, contacts a notes section, questions for each dr appt and i pay close attention. then i make sure i explain everything later. not just to him but my family, sisters and mother that arent retaining this either.

    i am only 32 and my mom is a vibrant extremely intelligant lady as well as my 2 sisters...however it seems i have to keep clarifing that this cannot be cured... thats what denial is. funny how trying to stay in charge of all this and ontop of everything is helping me cope in a way of a miricle

    i suggest you approach talking to your dad in a question form...ask him if he understood what the dr said...ask him if he wants you to get more details...if he says he doesnt want more info continue to get it for you...then if yous till have a burning desire to talk to him about it...sit and tell him that you got info for you...because you needed to know..then ask if he would like to know what you found.

    it has worked for me..and i warn you it can be a very emotional conversation...so make sure it is the right time and place, sitting with hopefully no distractions. even have paper and a pen in case he mentions things he might like or want from anything.

    the hospital gave me a 4 page brochure on advance directives...omg i couldnt imagine discussing stuff like that with him...but it had 2 pages on how to discuss each question and sections to write down their wishes for specific things...i thought that was great...im still waiting for the right time to start that because he has just been through a hellish 6 weeks in and out of the hospital but keep your ears open for the subtle mentions of things.

    i am very blunt with clarifying things to my dad...sugar coat it slightly but be stearn about it is what it is...

    you are in my prayers and i wish the best for you.
    i hope aat least one sentence reaches you some help
  • JillyB
    JillyB Member Posts: 50
    #10
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    Afraid
    I don't kow if I shoudl be saying this at this stage of my cancer, but I too am afraid. I am 35 with stageIII breast cancer, I think about dying from it all the time, and for good reason I am told for those who will tell the truth.10 Lmyphnodes were positve outside the local area, and the cancer had started to get into my blood vessels. My surgeon said it was extremely agggressive and had it not been found when it was, would have gone to stageIV soon, and it was found thru a simple chest CT for back surgery I had. (yeah, good year!) So I fell a bit bad posting here, when ya'll are so much further along, but I am having SO many complicationsduring chemo, it makes you think it's not working, or won't work because you have to take so many breaks to "get better enough" to handle the chmoe.What an oxymoron. OK, I will stop, and if I completely insulted all of you for posting here, let me know, and I'll move it somewhere, but I was reading your atories and for some reson could just really relate.
    Thinking of all of you and your loved ones.
    And I like how cheifskid said this: ""When we knew he would not be cured, our prayers turned to prayers for mercy."" I am assuming that the mercy is for your fathers suffering soul? God, my freakin chemo brain culd be making alot of enemies here. Have a good night.
  • Barbara53
    Barbara53 Member Posts: 652
    #11
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    JillyB said:

    Afraid
    I don't kow if I shoudl be saying this at this stage of my cancer, but I too am afraid. I am 35 with stageIII breast cancer, I think about dying from it all the time, and for good reason I am told for those who will tell the truth.10 Lmyphnodes were positve outside the local area, and the cancer had started to get into my blood vessels. My surgeon said it was extremely agggressive and had it not been found when it was, would have gone to stageIV soon, and it was found thru a simple chest CT for back surgery I had. (yeah, good year!) So I fell a bit bad posting here, when ya'll are so much further along, but I am having SO many complicationsduring chemo, it makes you think it's not working, or won't work because you have to take so many breaks to "get better enough" to handle the chmoe.What an oxymoron. OK, I will stop, and if I completely insulted all of you for posting here, let me know, and I'll move it somewhere, but I was reading your atories and for some reson could just really relate.
    Thinking of all of you and your loved ones.
    And I like how cheifskid said this: ""When we knew he would not be cured, our prayers turned to prayers for mercy."" I am assuming that the mercy is for your fathers suffering soul? God, my freakin chemo brain culd be making alot of enemies here. Have a good night.

    the acceptance forum
    Jilly, don't be afraid of sharing your fears and feeling here. You might call this the acceptance forum, because we caregivers work hard at accepting whatever comes. We know how impossibly difficult this is for you, because we see it in the faces of our loved ones every day.

    I'm caring for my mother (late stage ovarian), and there are people here caring for fathers, spouses, sisters, brothers, children, friends and of course themselves. You are not the only frightened patient here, either. It helps us immensely to hear what is on your heart as we make our way through this uncharted territory.

    The mercy we all seek is for less suffering, and as much joy as possibly during the days our loved ones have left.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #12
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    JillyB said:

    Afraid
    I don't kow if I shoudl be saying this at this stage of my cancer, but I too am afraid. I am 35 with stageIII breast cancer, I think about dying from it all the time, and for good reason I am told for those who will tell the truth.10 Lmyphnodes were positve outside the local area, and the cancer had started to get into my blood vessels. My surgeon said it was extremely agggressive and had it not been found when it was, would have gone to stageIV soon, and it was found thru a simple chest CT for back surgery I had. (yeah, good year!) So I fell a bit bad posting here, when ya'll are so much further along, but I am having SO many complicationsduring chemo, it makes you think it's not working, or won't work because you have to take so many breaks to "get better enough" to handle the chmoe.What an oxymoron. OK, I will stop, and if I completely insulted all of you for posting here, let me know, and I'll move it somewhere, but I was reading your atories and for some reson could just really relate.
    Thinking of all of you and your loved ones.
    And I like how cheifskid said this: ""When we knew he would not be cured, our prayers turned to prayers for mercy."" I am assuming that the mercy is for your fathers suffering soul? God, my freakin chemo brain culd be making alot of enemies here. Have a good night.

    OK to Post
    I just wanted to agree with Barbara that it is ok to post here. Of course you are scared. Even those who have early stage cancer have fear. Cancer is scary, but remember there has been a lot of progress in treatment. Many are surviving. Treatments are getting better. Cancer, however, does cause us to change our lives and to acknowledge our mortality. You are now a cancer survivor. That is your new reality. You are mourning your former healthy self. Anger and fear are part of that. Take care. Also, I would encourage you, if you haven't already, to post on the breast cancer board. I'm sure there are many there who feel as you do. Fay

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