If someone is dying – what to do?

Terra,

Does this mean Derek is doing the TIL treatment at NIH? I hope and pray for your family that he does have a response and this treatment does it for him. I felt this way when Bob was going through IL-2 and surgeries and our kids were 2 and 4. I started videoing everything, all the times he spent with the boys playing or just hanging out. We also did little local trips, because we really couldn't afford the big trip with the medical bills and two little kids.  The little trips were just as special, just not as expensive. We went to so many local things like luray caverns, museums, etc. We wanted to fit as much in as we could.  I think the memories of pictures and videos are the best. 

Rebecca

Terra,

Does this mean Derek is doing the TIL treatment at NIH? I hope and pray for your family that he does have a response and this treatment does it for him. I felt this way when Bob was going through IL-2 and surgeries and our kids were 2 and 4. I started videoing everything, all the times he spent with the boys playing or just hanging out. We also did little local trips, because we really couldn't afford the big trip with the medical bills and two little kids.  The little trips were just as special, just not as expensive. We went to so many local things like luray caverns, museums, etc. We wanted to fit as much in as we could.  I think the memories of pictures and videos are the best. 

Rebecca

Terra, I was concerned about how Derek was doing so thanks for the update. It looks like it is a very stressful time for you at the moment.

I think that a good attitude to have in this situation is to hope for the best, but be prepared if the worst should happen. As you may have read, I went through a very similar situation 2 years ago when we realised that treatment was unlikely to be successful.

I had many of the same thoughts as you have expressed, and it was certainly an extremely difficult time. What helped us to cope best was our faith and our friends at church. However, I know that many people are uncomfortable talking about religion and spirituality and they will have other ways of trying to make sense of things.

Take care

Frank from Australia

Terra, I was concerned about how Derek was doing so thanks for the update. It looks like it is a very stressful time for you at the moment.

I think that a good attitude to have in this situation is to hope for the best, but be prepared if the worst should happen. As you may have read, I went through a very similar situation 2 years ago when we realised that treatment was unlikely to be successful.

I had many of the same thoughts as you have expressed, and it was certainly an extremely difficult time. What helped us to cope best was our faith and our friends at church. However, I know that many people are uncomfortable talking about religion and spirituality and they will have other ways of trying to make sense of things.

Take care

Frank from Australia

Terra,

I think about this whole 'bucket list' concept every once in a while. I am stage IV, but NED and doing great, but still.. I think about it, and I'm with Derek, I'd want to spend time with my loved ones, not galivanting around trying to get in a bunch of memories…that's not that important to me

Talking is what you should do, and letting him talk and deal with any issues that might make his passing more difficult.

I heard a great show on NPR the other day about dignity therapy (http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life) it was mostly about the elderly dying, but it struck a chord with me about some of the things I should do for my family before I pass. It mostly has to do with recording family histories but I feel like it could apply to younger people as well.

Maybe he has some strories from his childhood he'd like to preserve for his children. Stories, or insights, that might be lost once he's gone.

I hope that the TIL works for Derek and that that he has a chance to walk his daughters down the aisle.

dian

Terra,

I think about this whole 'bucket list' concept every once in a while. I am stage IV, but NED and doing great, but still.. I think about it, and I'm with Derek, I'd want to spend time with my loved ones, not galivanting around trying to get in a bunch of memories…that's not that important to me

Talking is what you should do, and letting him talk and deal with any issues that might make his passing more difficult.

I heard a great show on NPR the other day about dignity therapy (http://www.npr.org/2011/09/12/140336146/for-the-dying-a-chance-to-rewrite-life) it was mostly about the elderly dying, but it struck a chord with me about some of the things I should do for my family before I pass. It mostly has to do with recording family histories but I feel like it could apply to younger people as well.

Maybe he has some strories from his childhood he'd like to preserve for his children. Stories, or insights, that might be lost once he's gone.

I hope that the TIL works for Derek and that that he has a chance to walk his daughters down the aisle.

dian

Terra:

Thank you for such a thoughtful post. You have touched on a struggle many people face.

I think you hit two very important points:  Derek's approach to treatment, and your ability to support him.

I lot of people get tired of treatment.  I saw this when I worked in nephrology 30 years ago–people on dialysis would make the worst decisions about their health.  I very smart dialysis nurse explained to me that having to come to a treatment center and be hooked to a machine for hours three times a week was a tough, tough struggle–not to mention carrying the knowledge that this would be your lifestyle for as long as you lived!  Ten years ago I had lunch with a friend who has AIDS.  The current drugs have made this, for many people, a chronic disease.  He told me, though, "I am so tired of having my life defined by a pill box."

So, getting tired of treatments and giving serious thought to just stopping and facing the consequences–that is a normal part of dealing long-term with an illness.  The challenge is determining between what are passing thoughts of frustration and exhaustion, and what is a real, final decision that enough is enough.  And it gets complicated by the emotional impact that some medications have on people.  This distinction is tricky, but very, very important.

And this spills over into the second part of your comment–how do you support him?  At least part of the answer is helping him work through these thoughts and feelings–or pushing him to find professional help to do so.  People faced with big life experiences (and this would include Derek, you, and your children!) find their emotions in a jumble.  Having someone help sort through those emotions and put them in the right compartments is very, very important.

I would just echo Dian's sentiment (and just for the record, she is a rock star whose advice is always solid!) you should never underestimate the value of doing the small things.  Sometimes sitting at home and reading a book or watching TV or chatting over dinner is the most wonderul experience you can have.  Nothing is more important than the people we love, and who love us.  In the end, it is the experiences you share–whether they are in London and Paris or in your living room–that you will treasure.

Sorry for the long post.  I have been giving this some thought for a while, and I do tend to ramble!

Tim–MRF

Terra:

Thank you for such a thoughtful post. You have touched on a struggle many people face.

I think you hit two very important points:  Derek's approach to treatment, and your ability to support him.

I lot of people get tired of treatment.  I saw this when I worked in nephrology 30 years ago–people on dialysis would make the worst decisions about their health.  I very smart dialysis nurse explained to me that having to come to a treatment center and be hooked to a machine for hours three times a week was a tough, tough struggle–not to mention carrying the knowledge that this would be your lifestyle for as long as you lived!  Ten years ago I had lunch with a friend who has AIDS.  The current drugs have made this, for many people, a chronic disease.  He told me, though, "I am so tired of having my life defined by a pill box."

So, getting tired of treatments and giving serious thought to just stopping and facing the consequences–that is a normal part of dealing long-term with an illness.  The challenge is determining between what are passing thoughts of frustration and exhaustion, and what is a real, final decision that enough is enough.  And it gets complicated by the emotional impact that some medications have on people.  This distinction is tricky, but very, very important.

And this spills over into the second part of your comment–how do you support him?  At least part of the answer is helping him work through these thoughts and feelings–or pushing him to find professional help to do so.  People faced with big life experiences (and this would include Derek, you, and your children!) find their emotions in a jumble.  Having someone help sort through those emotions and put them in the right compartments is very, very important.

I would just echo Dian's sentiment (and just for the record, she is a rock star whose advice is always solid!) you should never underestimate the value of doing the small things.  Sometimes sitting at home and reading a book or watching TV or chatting over dinner is the most wonderul experience you can have.  Nothing is more important than the people we love, and who love us.  In the end, it is the experiences you share–whether they are in London and Paris or in your living room–that you will treasure.

Sorry for the long post.  I have been giving this some thought for a while, and I do tend to ramble!

Tim–MRF

Terra, I'm going to try to post my response a little different than anyone on here has seen me post before.  I will go into some of my emotional feelings regarding support. 

    At times I have wondered if I wanted to keep fighting.  I do not like pain, either physical nor emotional, nor do I want to impose either type of pain on others, especially the woman I have loved for over 50 years.  If I were to want to go, I would like my loved ones, and I feel there are many, including 4 kids and 15 grandkids and many nieces and nephews and cousins, to still  look at what is happening in the melanoma world.  I wouldn't want to be made to feel that I was letting them down if I could not take the ongoing pain, either physical nor mental. Always possible a miracle COULD happen!  (Actually a last minute one did or I would not be here to type this, though not NED I'm still here loving my newest grand son-13 days old.)  My 6 months was up about 4 years ago!  While I would like my home where I can move around in it, extreme house work is not as important as being able to feel that someone (spouse or children) wants to be with me.  Food when I need it, especially for when I need to take meds and clean clothes and linen make me feel more like a normal person, so basic homemaking is not a waste, just be with me when I need it.  I don't want to feel that I am putting someone too far out of "their way" by asking for assistance so that my needs are met.  I want to be alone at times, but mostly would rather watch a sunset, take a ride or walk with someone I love.  To feel their closeness even when not speaking.  At times to make love when feeling up to it.  One of the biggest is to not feel that I am being disapproved of for my feelings or for my needed assistance in meds, eats, etc.  I know that a loved one dying is a "drag" on the one surviving and I don't want to be made to feel that they feel that they would be much better off if I were gone (even if they might actually be.)  Last year I essentially died from an accident.  I will always remember "coming to" a month later with 9 grandkids often at the hospital and one particular young lady laying on me saying, many times, "Granddaddy,, I LOVE YOU!"  I often wonder how much that alone called me back from where the ICU staff though I was.

   I do urge all survivors of spouses that reach Stage IV to learn the details that they will need to be able to live without us.  I want to feel that the spouse can survive, even if I don't make it.  I want to hang around, but don't want to feel that I let them down again by them not being able to carry on without me.  I fully expect a large hole to left in their life without me, but I want to feel that spouse, children, and grandchildren will make it either way.

   P.S. Does Tim really think he was long winded?  Oh, well, he knows I can be too!  I've never seen Tim long winded saying things that didn't need to be said!

JerryfromFauq Stage IV (Feb 2007 and not NED since then.)

Terra, I'm going to try to post my response a little different than anyone on here has seen me post before.  I will go into some of my emotional feelings regarding support. 

    At times I have wondered if I wanted to keep fighting.  I do not like pain, either physical nor emotional, nor do I want to impose either type of pain on others, especially the woman I have loved for over 50 years.  If I were to want to go, I would like my loved ones, and I feel there are many, including 4 kids and 15 grandkids and many nieces and nephews and cousins, to still  look at what is happening in the melanoma world.  I wouldn't want to be made to feel that I was letting them down if I could not take the ongoing pain, either physical nor mental. Always possible a miracle COULD happen!  (Actually a last minute one did or I would not be here to type this, though not NED I'm still here loving my newest grand son-13 days old.)  My 6 months was up about 4 years ago!  While I would like my home where I can move around in it, extreme house work is not as important as being able to feel that someone (spouse or children) wants to be with me.  Food when I need it, especially for when I need to take meds and clean clothes and linen make me feel more like a normal person, so basic homemaking is not a waste, just be with me when I need it.  I don't want to feel that I am putting someone too far out of "their way" by asking for assistance so that my needs are met.  I want to be alone at times, but mostly would rather watch a sunset, take a ride or walk with someone I love.  To feel their closeness even when not speaking.  At times to make love when feeling up to it.  One of the biggest is to not feel that I am being disapproved of for my feelings or for my needed assistance in meds, eats, etc.  I know that a loved one dying is a "drag" on the one surviving and I don't want to be made to feel that they feel that they would be much better off if I were gone (even if they might actually be.)  Last year I essentially died from an accident.  I will always remember "coming to" a month later with 9 grandkids often at the hospital and one particular young lady laying on me saying, many times, "Granddaddy,, I LOVE YOU!"  I often wonder how much that alone called me back from where the ICU staff though I was.

   I do urge all survivors of spouses that reach Stage IV to learn the details that they will need to be able to live without us.  I want to feel that the spouse can survive, even if I don't make it.  I want to hang around, but don't want to feel that I let them down again by them not being able to carry on without me.  I fully expect a large hole to left in their life without me, but I want to feel that spouse, children, and grandchildren will make it either way.

   P.S. Does Tim really think he was long winded?  Oh, well, he knows I can be too!  I've never seen Tim long winded saying things that didn't need to be said!

JerryfromFauq Stage IV (Feb 2007 and not NED since then.)

You've already received some very thoughtful and useful advice. As a current caregiver, in a similar situation, I'd add just one other thing. Take care of yourself. Carve out little blocks of time to refresh, rejuvenate, and relax. Get your husband to help you do this – I know for my wife she is very happy that she can do this one thing in the "now" that makes my burden easier. She does this by agreeing to have someone come over and watch her or go with them for a walk or coffee, freeing me up. You don't know how long journey this could go on. It is easy to get active and attend to the myriad of things that need to be attended to – especially in a household that is as busy as yours. Over time, the pressure on the caregiver to be upbeat, supportive, attend to the physical and emotiona needs of your spouse, and be the emotional rock for the kids is enormous. It wil take its toll and you won't be quite as perky and upbeat as you once were, or want to be (unless you are Superwoman). So enlist the aid of your husband and others, and go to coffee or tea with a friend, go for a walk, or read a book or magazine in solitude, or whatever helps you. 

I wish you strength and peace during this journey. 

Nick

You've already received some very thoughtful and useful advice. As a current caregiver, in a similar situation, I'd add just one other thing. Take care of yourself. Carve out little blocks of time to refresh, rejuvenate, and relax. Get your husband to help you do this – I know for my wife she is very happy that she can do this one thing in the "now" that makes my burden easier. She does this by agreeing to have someone come over and watch her or go with them for a walk or coffee, freeing me up. You don't know how long journey this could go on. It is easy to get active and attend to the myriad of things that need to be attended to – especially in a household that is as busy as yours. Over time, the pressure on the caregiver to be upbeat, supportive, attend to the physical and emotiona needs of your spouse, and be the emotional rock for the kids is enormous. It wil take its toll and you won't be quite as perky and upbeat as you once were, or want to be (unless you are Superwoman). So enlist the aid of your husband and others, and go to coffee or tea with a friend, go for a walk, or read a book or magazine in solitude, or whatever helps you. 

I wish you strength and peace during this journey. 

Nick

What a beautiful thread this is – so much love, even with sadness.

What a beautiful thread this is – so much love, even with sadness.

Nick said some very important things.  YOU have to also take care of yourself.  You cannot take care of the patient and family if you are not in physical nor mental shape to do it.   I urge you to discuss some of this with Derek.  You both need time to feel down, get a change of scenery, get rid of certain stress pains.  I suspect you both know this, but may be hesitant to want to mention it to each other.  If you have a girlfriend that you and he feels comfortable with your being with, Do some things you did before melanoma reared its ugly head.  Urge Derek to do some things he liked before with a friend.  Let each other know that neither is running from the other.  Good luck.

Nick said some very important things.  YOU have to also take care of yourself.  You cannot take care of the patient and family if you are not in physical nor mental shape to do it.   I urge you to discuss some of this with Derek.  You both need time to feel down, get a change of scenery, get rid of certain stress pains.  I suspect you both know this, but may be hesitant to want to mention it to each other.  If you have a girlfriend that you and he feels comfortable with your being with, Do some things you did before melanoma reared its ugly head.  Urge Derek to do some things he liked before with a friend.  Let each other know that neither is running from the other.  Good luck.