Hospice reactions

ruthelizabeth

On Friday the dr. will tell us that there is nothing else he can try that will work and he will suggest getting in touch with hospice. Don has fought very hard and is very tough. He has faced other health problems and always won. His positive attitude has slowly degraded as he feels worse, struggles to stop coughing, sees the tumors growing. I do know that he has understood that he might die, but I don't know how he'll react to Friday's talk with the dr.

Can anyone suggest what I might see and how I might help him?

I think it's possible he'll be angry, frightened, sad, depressed and very frustrated, possibly also not willing to believe there's nothing else that will help. I think that all I can say really is that having hospice doesn't mean he'll die immediately; it simply means that instead of fighting both the cancer and the side effects of the cancer med, we will be able to concentrate on minimizing the cancer symptoms and doing the things he loves to do as much as we're able.

I would seriously appreciate anything anyone can suggest.

SamsWife

Hospice Reactions

ruthelizabeth,

I'm so sorry to hear that you've reached this time - my husband has colon cancer and was diagnosed in July 2007. We started with Hospice the end of Nov. 2009 - just had a brief break due to him needing emergency surgery - and we've been back on for a week and a half. His dr. offered him one last shot with chemo. but with little to no hope of it helping - my husband opted not to try - he was done with chemo. Hospice is managing to keep him quite comfortable but there are side effects associated with the amount of pain med's. he's taking - sleeps most of the time and is not in reality quite often - he can't concentrate for very long and is very forgetful - he doesn't usually know what day it is or what time it is. He does know who we all are but doesn't remember seeing visitors after they leave. Sometimes he'll remember a visit. He's in bed most of the time - he gets up to go to the bathroom or the kitchen but that pretty much takes all of his energy. In our case, we did have a short period of time that we could have done a few things - my husband mentioned going out on a boat and I told him we would make it happen but he decided he didn't want to try. If you're husband has the desire and wants to do things, definitely go for it but don't wait (of course, this is only based on our experience). My husband had a tendency to give in to cancer - he didn't fight through the chemo. side effects or use "the good moments" to do things - that's not a judgment (heaven knows what a fight this all is!), just an observation. He felt he had no chance from the time he was diagnosed.

I hope this helps you - good luck to you and I'm so sorry you're dealing with all of this.

Take care.

soccerfreaks

Hospice
ruthelizabeth,

Chances are that your husband has already been 'angry, frightened, sad, depressed and very frustrated' because of this disease, even if he has not displayed some of these emotions outwardly in the past.

When we are diagnosed, after all, it sounds like a death sentence to those of us, most of us, I would venture to say, who have not spent a lot of time studying the disease. Still, as you suggest, an announcement like 'palliative care' or 'hospice' tends to remove any blur from our picture of reality.

When I was told I had 'as little as 10 months to live', when I was told that palliative care was my best option, the air seemed to be sucked from the room, ruth. Still, on the ride home, it was me tending to my wife's emotional crisis, rather than the other way around. Perhaps I was too stunned to react otherwise, but I repeated over and over that it would be alright, that I could handle it, and who knows what else.

It sounds as though your husband has been a tough camper throughout your shared ordeal, even if his optimism has flagged over time. It may very well be, ruth, that he has a sneaking suspicion (at least) of what is going to happen. And, in any case, it may very well be that he will handle it, at least short-term, better than you.

Your proposed response is a great one, ruthelizabeth. Honesty is generally the best policy, and if it were me, I would want to know what was going on so that I could with greatest awareness live the rest of my life as SamsWife suggests (it is astonishing that we do not do so immediately upon springing from the womb, but most of us don't). I would want the opinion of my significant other with regard to treatment options, and I would want it to be an honest opinion.

YOu do not indicate whether the hospice will be home hospice or elsewhere. I would encourage you to look into home hospice, ruth, as it sells itself in many ways, including comfort level and familiarity, the ability of family and friends to visit without regulation, and, all the while, the expert care of professionals for those tasks you and other loved ones are not up for. I caution that while your husband might prefer this, it may add something to a burden you already carry, I know.

These are tough times, ruthelizabeth, tougher than what you have gone through so far, you and hub. They are going to get tougher.

I wish you both the best.

Take care,

Joe

ruthelizabeth

soccerfreaks said:

Hospice
ruthelizabeth,

Chances are that your husband has already been 'angry, frightened, sad, depressed and very frustrated' because of this disease, even if he has not displayed some of these emotions outwardly in the past.

When we are diagnosed, after all, it sounds like a death sentence to those of us, most of us, I would venture to say, who have not spent a lot of time studying the disease. Still, as you suggest, an announcement like 'palliative care' or 'hospice' tends to remove any blur from our picture of reality.

When I was told I had 'as little as 10 months to live', when I was told that palliative care was my best option, the air seemed to be sucked from the room, ruth. Still, on the ride home, it was me tending to my wife's emotional crisis, rather than the other way around. Perhaps I was too stunned to react otherwise, but I repeated over and over that it would be alright, that I could handle it, and who knows what else.

It sounds as though your husband has been a tough camper throughout your shared ordeal, even if his optimism has flagged over time. It may very well be, ruth, that he has a sneaking suspicion (at least) of what is going to happen. And, in any case, it may very well be that he will handle it, at least short-term, better than you.

Your proposed response is a great one, ruthelizabeth. Honesty is generally the best policy, and if it were me, I would want to know what was going on so that I could with greatest awareness live the rest of my life as SamsWife suggests (it is astonishing that we do not do so immediately upon springing from the womb, but most of us don't). I would want the opinion of my significant other with regard to treatment options, and I would want it to be an honest opinion.

YOu do not indicate whether the hospice will be home hospice or elsewhere. I would encourage you to look into home hospice, ruth, as it sells itself in many ways, including comfort level and familiarity, the ability of family and friends to visit without regulation, and, all the while, the expert care of professionals for those tasks you and other loved ones are not up for. I caution that while your husband might prefer this, it may add something to a burden you already carry, I know.

These are tough times, ruthelizabeth, tougher than what you have gone through so far, you and hub. They are going to get tougher.

I wish you both the best.

Take care,

Joe

Thanks, Joe.
Yes, it will have to be home hospice. Don would just not do well in a regulated setting. At home he could still paint and listen to opera on a loud setting and be himself. He is still doing as much as he can to make things normal, but I doubt that can go on much longer. He gets coughing spasms more frequently. I'm beginning to worry about him driving in case one hits then -- and I suspect he is, too.

Don does know what's coming. I think he just doesn't want to hear that it's arrived. He is a very strong person. He's faced 4-way bypass and come thru fine. When he had to have emergency surgery to remove his kidney, his dr. told me that he'd never had quite that reaction from any of his patients. I asked what it was. Dr. said after he told Don he'd have to have his kidney out right away, Don said, "But this will spoil our vacation. My wife's been looking forward to it." I smiled because that was so typical. Don is great with in, out, heal. And he's been great during three years of tests and treatment.

But the weakness and visible signs of cancer growth and the frightening struggles to breathe and the blood coming up are all wearing him down. I think about all I can offer him, other than a lot of love and support, is the hope that hospice care will ease some of what he's going thru.

Thanks for the responses, both of you. I need all the input I can get. I want to be as wise and good for him as I can.

Ruth

soccerfreaks

ruthelizabeth said:

Thanks, Joe.
Yes, it will have to be home hospice. Don would just not do well in a regulated setting. At home he could still paint and listen to opera on a loud setting and be himself. He is still doing as much as he can to make things normal, but I doubt that can go on much longer. He gets coughing spasms more frequently. I'm beginning to worry about him driving in case one hits then -- and I suspect he is, too.

Don does know what's coming. I think he just doesn't want to hear that it's arrived. He is a very strong person. He's faced 4-way bypass and come thru fine. When he had to have emergency surgery to remove his kidney, his dr. told me that he'd never had quite that reaction from any of his patients. I asked what it was. Dr. said after he told Don he'd have to have his kidney out right away, Don said, "But this will spoil our vacation. My wife's been looking forward to it." I smiled because that was so typical. Don is great with in, out, heal. And he's been great during three years of tests and treatment.

But the weakness and visible signs of cancer growth and the frightening struggles to breathe and the blood coming up are all wearing him down. I think about all I can offer him, other than a lot of love and support, is the hope that hospice care will ease some of what he's going thru.

Thanks for the responses, both of you. I need all the input I can get. I want to be as wise and good for him as I can.

Ruth

Caring for the caregiver
Understood, Ruth. Please be sure you consider that the best way to be a good caregiver is to take good care of the giver. Make time for yourself if you can, even if it is just a walk, so that you can best make time for your husband.

As an aside, it is great that your husband has these avenues, art and music, to comfort him and to keep him going. As it happens, there was a time not so long ago when I determined to take up painting. My daughter, something of an expert on the subject, looked at my work, still lifes with depression I would call them , and said, "Dad, you need to stick to abstract."

Take care, Ruth,

Joe

augigi

soccerfreaks said:

Caring for the caregiver
Understood, Ruth. Please be sure you consider that the best way to be a good caregiver is to take good care of the giver. Make time for yourself if you can, even if it is just a walk, so that you can best make time for your husband.

As an aside, it is great that your husband has these avenues, art and music, to comfort him and to keep him going. As it happens, there was a time not so long ago when I determined to take up painting. My daughter, something of an expert on the subject, looked at my work, still lifes with depression I would call them , and said, "Dad, you need to stick to abstract."

Take care, Ruth,

Joe

I have been so pleased since
I have been so pleased since we got home hospice services. I found my mother only accepted it when we called it "palliative care" - which after all, is what it is. "Hospice" has the ring of death to many, and she was a nurse herself. She is a stubborn woman and even she has come to see the wisdom of having someone watching out, visiting, advising on meds/assist devices/etc and available after hours now. I really think the sooner the better, as they have such a lot of good ideas and tips about managing symptoms. I can truly say mum's quality of life is MUCH greater since getting the home care involved.

Best of luck with hubby, I'm sure you'll deal with it well.

newbride

ruthelizabeth said:

Thanks, Joe.
Yes, it will have to be home hospice. Don would just not do well in a regulated setting. At home he could still paint and listen to opera on a loud setting and be himself. He is still doing as much as he can to make things normal, but I doubt that can go on much longer. He gets coughing spasms more frequently. I'm beginning to worry about him driving in case one hits then -- and I suspect he is, too.

Don does know what's coming. I think he just doesn't want to hear that it's arrived. He is a very strong person. He's faced 4-way bypass and come thru fine. When he had to have emergency surgery to remove his kidney, his dr. told me that he'd never had quite that reaction from any of his patients. I asked what it was. Dr. said after he told Don he'd have to have his kidney out right away, Don said, "But this will spoil our vacation. My wife's been looking forward to it." I smiled because that was so typical. Don is great with in, out, heal. And he's been great during three years of tests and treatment.

But the weakness and visible signs of cancer growth and the frightening struggles to breathe and the blood coming up are all wearing him down. I think about all I can offer him, other than a lot of love and support, is the hope that hospice care will ease some of what he's going thru.

Thanks for the responses, both of you. I need all the input I can get. I want to be as wise and good for him as I can.

Ruth

Ruth
I haven't read any of your other previous posts but from the little I read your husband sounds alot like mine - in which you can physically see the tumor growth which is very scary!

I happened to have a very unusual experience where my husband had easily accepted his fate. No one understands why but I think instead he had prepared himself for the worse from day one. When he came home from our honeymoon and the tumor returned - he said to me "this is it, my life is coming to an end" - that was before the 2nd surgery and treatments.

When treatments ended he told me he had about 2 months to live -- I asked the doctor if he told him this and the doctor told me NO they would not know the results until after the CT scans. He told me to tell my husband to stop jumping to conclusions.

The CT scans proved that my husband was correct on we found out on Oct 1 there was nothing more they could do.

It was my husband's idea to call in hospice - he felt not only would they keep track of what was going on with him but would also help me. Again, he was so correct. I could never have done this one my own!

He was home until 6 days before he passed away. At that time it was too difficult to keep him home because he was still trying to do things for himself and had fallen several times. He also needed higher doses of pain medications and round the clock care that I couldn't do.

On the Wednesday before he passed away, he held me tight and told me he was ready to go home. I told him I knew and he was pretty much sedated and sleeping the next 2 days that I was with him.

grandmafay

Friday
Friday has now come and gone. I hope things went as well as possible at the dr. Hospice is there to help both of you. My husband continued doing most things for himself until the last couple of days. He was in a wheelchair for the last couple of weeks but still managed to use the restroom, etc. on his own. Hospice helped us get a hospital bed and helped with pain management, oxygen, and medications. They encouraged him to do as much as he was able to do. It's still not an easy time. Take care, Fay

ruthelizabeth

grandmafay said:

Friday
Friday has now come and gone. I hope things went as well as possible at the dr. Hospice is there to help both of you. My husband continued doing most things for himself until the last couple of days. He was in a wheelchair for the last couple of weeks but still managed to use the restroom, etc. on his own. Hospice helped us get a hospital bed and helped with pain management, oxygen, and medications. They encouraged him to do as much as he was able to do. It's still not an easy time. Take care, Fay

Well, he lied.
So the dr. told me that he'd suggest hospice. Nooooo, that didn't happen. What happened was this:

He told Don and me that the options he had weren't working, but that it was important to get the tumors stopped. Internally there was little or no growth at all. (I am now staring at the dr. because two weeks ago he told me that Don's wrending coughing spasms that bring up blood were obviously the result of cancer spreading from his chest up his throat and further). And I asked, what about the coughing? Oh, he said, it must be just one or two nodules that are active; nothing serious.

And around there, Don asked about maybe getting oxygen to help with his breathing at night and the dr. said, yes, it could help. Might help. We could do that.

And then he went on. Said that he was referring us to Moffitt. His practice was affiliated there, they knew all about what Moffitt was looking into in experimental drugs and there wasn't anything likely to help, but he'd refer us so they could see if there was. Said we'd probably be going up the end of Feb. They'd do a cat scan there.

Then he told DOn he wouldn't be having any more torisel treatments, no cat scan. Didn't say anything more about oxygen. He was done. He left.

I saw the dr. for two minutes alone afterwards. YOu do not know what I said and it's just as well I didn't do it. I'm too short to do it thoroughly and I don't think he has the equipment.

He told me that HE knew Don was going to die and I knew he was going to die and DON knew he was going to die. And then he stormed out. I told his nurse (also his wife) that no one in a white coat had ever mentioned that three-letter word to Don. And she tried to console me by saying that when we got to Moffitt at the end of the month, they would tell him.

Don says that he feels as if the dr. just shoveled us out of his office. Even though he had three terrible nights this weekend, he doesn't want to call the dr. to see if there's anything he can do. Don says that the dr. doesn't want to see us again.

Fortunately I talked to a retired dr. in my church congregation. He suggested getting Don to go back on diurhetics as his breathing may be due in part to congestive heart failure. He told me that if I got the medical records, even if we didn't have an appt. at Moffitt, if DOn got very much worse, we could take the records and drive up and go to the emergency room there. If we do get an appt., I can call and ask them to move it earlier in the month due to Don's worsening condition. He also said the oncologist needs to go get more training in how to talk to dying patients.

I might just be tall enough if I worked at it. Unfortunately I am working on 3 hours' sleep most nights and I probably couldn't do a really good job.

Thank you all for replying. I'm going to be rereading the posts a lot.

soccerfreaks

ruthelizabeth said:

Well, he lied.
So the dr. told me that he'd suggest hospice. Nooooo, that didn't happen. What happened was this:

He told Don and me that the options he had weren't working, but that it was important to get the tumors stopped. Internally there was little or no growth at all. (I am now staring at the dr. because two weeks ago he told me that Don's wrending coughing spasms that bring up blood were obviously the result of cancer spreading from his chest up his throat and further). And I asked, what about the coughing? Oh, he said, it must be just one or two nodules that are active; nothing serious.

And around there, Don asked about maybe getting oxygen to help with his breathing at night and the dr. said, yes, it could help. Might help. We could do that.

And then he went on. Said that he was referring us to Moffitt. His practice was affiliated there, they knew all about what Moffitt was looking into in experimental drugs and there wasn't anything likely to help, but he'd refer us so they could see if there was. Said we'd probably be going up the end of Feb. They'd do a cat scan there.

Then he told DOn he wouldn't be having any more torisel treatments, no cat scan. Didn't say anything more about oxygen. He was done. He left.

I saw the dr. for two minutes alone afterwards. YOu do not know what I said and it's just as well I didn't do it. I'm too short to do it thoroughly and I don't think he has the equipment.

He told me that HE knew Don was going to die and I knew he was going to die and DON knew he was going to die. And then he stormed out. I told his nurse (also his wife) that no one in a white coat had ever mentioned that three-letter word to Don. And she tried to console me by saying that when we got to Moffitt at the end of the month, they would tell him.

Don says that he feels as if the dr. just shoveled us out of his office. Even though he had three terrible nights this weekend, he doesn't want to call the dr. to see if there's anything he can do. Don says that the dr. doesn't want to see us again.

Fortunately I talked to a retired dr. in my church congregation. He suggested getting Don to go back on diurhetics as his breathing may be due in part to congestive heart failure. He told me that if I got the medical records, even if we didn't have an appt. at Moffitt, if DOn got very much worse, we could take the records and drive up and go to the emergency room there. If we do get an appt., I can call and ask them to move it earlier in the month due to Don's worsening condition. He also said the oncologist needs to go get more training in how to talk to dying patients.

I might just be tall enough if I worked at it. Unfortunately I am working on 3 hours' sleep most nights and I probably couldn't do a really good job.

Thank you all for replying. I'm going to be rereading the posts a lot.

the doc
Ruth,

I would say that just as importantly the doctor needs some education in how to discuss matters with significant others, with primary caregivers, with loved ones. From your description it sounds like he came up quite short.

As I tried to convey to you in the chatroom, Moffitt is, from all indications, a highly esteemed institution. It is probably a good thing that your husband is going there. If you have not yet done so, you might consider asking this doctor to refer your hub to another doctor at Moffitt so that you can make an appointment immediately with this person. Perhaps the retired doc can make a suggestion as to who to see at Moffitt?

It may be that this doc is right. It may be that another doctor will give the same analysis. But I doubt that another doctor would be quite so brutal to the spouse, and I am hopeful that you can find someone who maintains hope as a tenant of treatment.

This guy, the one you describe, sounds a bit jaded by previous experience.

Take care,

Joe

grandmafay

ruthelizabeth said:

Well, he lied.
So the dr. told me that he'd suggest hospice. Nooooo, that didn't happen. What happened was this:

He told Don and me that the options he had weren't working, but that it was important to get the tumors stopped. Internally there was little or no growth at all. (I am now staring at the dr. because two weeks ago he told me that Don's wrending coughing spasms that bring up blood were obviously the result of cancer spreading from his chest up his throat and further). And I asked, what about the coughing? Oh, he said, it must be just one or two nodules that are active; nothing serious.

And around there, Don asked about maybe getting oxygen to help with his breathing at night and the dr. said, yes, it could help. Might help. We could do that.

And then he went on. Said that he was referring us to Moffitt. His practice was affiliated there, they knew all about what Moffitt was looking into in experimental drugs and there wasn't anything likely to help, but he'd refer us so they could see if there was. Said we'd probably be going up the end of Feb. They'd do a cat scan there.

Then he told DOn he wouldn't be having any more torisel treatments, no cat scan. Didn't say anything more about oxygen. He was done. He left.

I saw the dr. for two minutes alone afterwards. YOu do not know what I said and it's just as well I didn't do it. I'm too short to do it thoroughly and I don't think he has the equipment.

He told me that HE knew Don was going to die and I knew he was going to die and DON knew he was going to die. And then he stormed out. I told his nurse (also his wife) that no one in a white coat had ever mentioned that three-letter word to Don. And she tried to console me by saying that when we got to Moffitt at the end of the month, they would tell him.

Don says that he feels as if the dr. just shoveled us out of his office. Even though he had three terrible nights this weekend, he doesn't want to call the dr. to see if there's anything he can do. Don says that the dr. doesn't want to see us again.

Fortunately I talked to a retired dr. in my church congregation. He suggested getting Don to go back on diurhetics as his breathing may be due in part to congestive heart failure. He told me that if I got the medical records, even if we didn't have an appt. at Moffitt, if DOn got very much worse, we could take the records and drive up and go to the emergency room there. If we do get an appt., I can call and ask them to move it earlier in the month due to Don's worsening condition. He also said the oncologist needs to go get more training in how to talk to dying patients.

I might just be tall enough if I worked at it. Unfortunately I am working on 3 hours' sleep most nights and I probably couldn't do a really good job.

Thank you all for replying. I'm going to be rereading the posts a lot.

So Sorry
I am so sorry you had this experience with the doctor, and that you and your husband are dealing with an insensitive dr. as well as this devastating disease. I can understand that it might be hard to tell someone that they think that there is nothing more to do, but an oncologist must deal with this fairly often. I guess that they just don't want to take away hope. I felt that my husband's oncologist should have stopped chemo earlier than he did, but I think he believed that my husband wanted to try it longer. On our last visit, I asked him to be brutally honest with us and if it was time to call hospice. He seemed relieved that I brought it up first. Maybe my husband wasn't ready to accept it until then. Maybe the doctor wasn't ready to accept it until then. They had both tried so hard to beat the cancer for 6 years. I know our oncologist expressed some feeling of failure. My husband and I both expressed our thanks for his care. Maybe it is hard for the drs. to lose one. That's no excuse for poor bedside manner or insensitivity on their part, though.

Now please follow through on the appointment with Moffitt. I don't know anything about them, but I would call them directly and push for a timely appointment. I did take a quick look at their website and it looks like you can refer yourself and make an appointment on the phone. Then, you will know that everything possible is being done. If your dr. truly believes that nothing more can be done, I think he is guilty of giving your husband false hope. However, maybe this appointment will lead to better comfort and pain care. I can certainly understand your pain. It looks like Moffitt may have family support programs as well. Hang in there and take care of yourself. Fay

Unknown

grandmafay said:

So Sorry
I am so sorry you had this experience with the doctor, and that you and your husband are dealing with an insensitive dr. as well as this devastating disease. I can understand that it might be hard to tell someone that they think that there is nothing more to do, but an oncologist must deal with this fairly often. I guess that they just don't want to take away hope. I felt that my husband's oncologist should have stopped chemo earlier than he did, but I think he believed that my husband wanted to try it longer. On our last visit, I asked him to be brutally honest with us and if it was time to call hospice. He seemed relieved that I brought it up first. Maybe my husband wasn't ready to accept it until then. Maybe the doctor wasn't ready to accept it until then. They had both tried so hard to beat the cancer for 6 years. I know our oncologist expressed some feeling of failure. My husband and I both expressed our thanks for his care. Maybe it is hard for the drs. to lose one. That's no excuse for poor bedside manner or insensitivity on their part, though.

Now please follow through on the appointment with Moffitt. I don't know anything about them, but I would call them directly and push for a timely appointment. I did take a quick look at their website and it looks like you can refer yourself and make an appointment on the phone. Then, you will know that everything possible is being done. If your dr. truly believes that nothing more can be done, I think he is guilty of giving your husband false hope. However, maybe this appointment will lead to better comfort and pain care. I can certainly understand your pain. It looks like Moffitt may have family support programs as well. Hang in there and take care of yourself. Fay

This comment has been removed by the Moderator

ruthelizabeth

unknown said:

This comment has been removed by the Moderator

update
Don was due to have four tumors worked on today. They hurt or itch all the time and, after finally deciding which ones out of all of them he wanted operated on, we got a date set. The surgeon is good and he was ummmm not exactly reluctant but almost. So I called him yesterday to ask him to check Don over before surgery because he's having more problems breathing. The surgeon said that he'd seen that and I ended up telling him about our appt. Friday with the oncologist. He said that if I wanted him to, he'd talk to us and tell Don how bad things are. We see him tomorrow at 2.

Just was told we have an appt. at Moffitt on 2/10. That's God's timing. We were going up to a lake just north of there on 2/11. I've made arrangements for us to go to the lake on 2/9 so we can have an easy drive in to Moffitt and return to the lake afterwards. We'll have a few days to absorb whatever happens. The lake is beautiful and calm and the people there are wonderful.

I think that Don (and me, too) will feel better seeing the specialists. He may feel that the surgeon isn't an oncologist and that there may be something Moffitt can do. I hope so. Mostly I want us both to know that we've tried the specialists and know that there's nothing more they can offer. Maybe they will have something. YOu never know. But the oncologist told us he didn't think they did, but they might. (Okay, which is it? The problem is that after hearing the oncologist lie so well to Don in the appt., I have a hard time believing anything he says.

Anyway, DOn has been counting the days until we go to the lake and we're going to do our best to have a good time.

Thank you all so much. Don't know what I'd do without you.

Ruth

grandmafay

ruthelizabeth said:

update
Don was due to have four tumors worked on today. They hurt or itch all the time and, after finally deciding which ones out of all of them he wanted operated on, we got a date set. The surgeon is good and he was ummmm not exactly reluctant but almost. So I called him yesterday to ask him to check Don over before surgery because he's having more problems breathing. The surgeon said that he'd seen that and I ended up telling him about our appt. Friday with the oncologist. He said that if I wanted him to, he'd talk to us and tell Don how bad things are. We see him tomorrow at 2.

Just was told we have an appt. at Moffitt on 2/10. That's God's timing. We were going up to a lake just north of there on 2/11. I've made arrangements for us to go to the lake on 2/9 so we can have an easy drive in to Moffitt and return to the lake afterwards. We'll have a few days to absorb whatever happens. The lake is beautiful and calm and the people there are wonderful.

I think that Don (and me, too) will feel better seeing the specialists. He may feel that the surgeon isn't an oncologist and that there may be something Moffitt can do. I hope so. Mostly I want us both to know that we've tried the specialists and know that there's nothing more they can offer. Maybe they will have something. YOu never know. But the oncologist told us he didn't think they did, but they might. (Okay, which is it? The problem is that after hearing the oncologist lie so well to Don in the appt., I have a hard time believing anything he says.

Anyway, DOn has been counting the days until we go to the lake and we're going to do our best to have a good time.

Thank you all so much. Don't know what I'd do without you.

Ruth

Moving Along
It sounds like things are moving along and that you are on top of everything. The lake will be a nice change of scenery. I'll be thinking of you. Fay

grandmafay

ruthelizabeth said:

update
Don was due to have four tumors worked on today. They hurt or itch all the time and, after finally deciding which ones out of all of them he wanted operated on, we got a date set. The surgeon is good and he was ummmm not exactly reluctant but almost. So I called him yesterday to ask him to check Don over before surgery because he's having more problems breathing. The surgeon said that he'd seen that and I ended up telling him about our appt. Friday with the oncologist. He said that if I wanted him to, he'd talk to us and tell Don how bad things are. We see him tomorrow at 2.

Just was told we have an appt. at Moffitt on 2/10. That's God's timing. We were going up to a lake just north of there on 2/11. I've made arrangements for us to go to the lake on 2/9 so we can have an easy drive in to Moffitt and return to the lake afterwards. We'll have a few days to absorb whatever happens. The lake is beautiful and calm and the people there are wonderful.

I think that Don (and me, too) will feel better seeing the specialists. He may feel that the surgeon isn't an oncologist and that there may be something Moffitt can do. I hope so. Mostly I want us both to know that we've tried the specialists and know that there's nothing more they can offer. Maybe they will have something. YOu never know. But the oncologist told us he didn't think they did, but they might. (Okay, which is it? The problem is that after hearing the oncologist lie so well to Don in the appt., I have a hard time believing anything he says.

Anyway, DOn has been counting the days until we go to the lake and we're going to do our best to have a good time.

Thank you all so much. Don't know what I'd do without you.

Ruth

Moving Along
Double posted

ruthelizabeth

grandmafay said:

Moving Along
Double posted

okay, so far.
Just saw the surgeon. He was amazingly good with us. He will refer us to hospice and we'll talk to them after we get back from Moffitt and the lake.

I feel exhausted, but I'm glad Don heard it from someone he knows and likes. The surgeon asked if the oncologist had ever talked about outcomes and Don said honestly that a long time ago the dr. had told him that some people lasted four months and others lasted eleven years. And that's true.

Can't write more. I really should do more than just look at food, but it keeps looking back at me.

Thank you all.

Ruth Elizabeth

Barbara53

ruthelizabeth said:

okay, so far.
Just saw the surgeon. He was amazingly good with us. He will refer us to hospice and we'll talk to them after we get back from Moffitt and the lake.

I feel exhausted, but I'm glad Don heard it from someone he knows and likes. The surgeon asked if the oncologist had ever talked about outcomes and Don said honestly that a long time ago the dr. had told him that some people lasted four months and others lasted eleven years. And that's true.

Can't write more. I really should do more than just look at food, but it keeps looking back at me.

Thank you all.

Ruth Elizabeth

thanks so much
Thanks so much for sharing. I suspect there are many out there besides you and me who are hitting the hospice transition time. When the results of this week's tests come in, I hope we can bring in good people who know more than I do how to handle my Mom's increasingly complicated symptoms.

Maybe one test of "when it's time for hospice" is when the caregiver realizes that they're in over their head and don't know what to do.

I hope that Don finds more peace -- at the lake or anywhere -- now that he knows it's time to get ready for the Great Reward. You are such a blessing to him. Wishing you rich days ahead.

newbride

Barbara53 said:

thanks so much
Thanks so much for sharing. I suspect there are many out there besides you and me who are hitting the hospice transition time. When the results of this week's tests come in, I hope we can bring in good people who know more than I do how to handle my Mom's increasingly complicated symptoms.

Maybe one test of "when it's time for hospice" is when the caregiver realizes that they're in over their head and don't know what to do.

I hope that Don finds more peace -- at the lake or anywhere -- now that he knows it's time to get ready for the Great Reward. You are such a blessing to him. Wishing you rich days ahead.

Barbara
Hospice is really misunderstood by many people. Like yourself I thought "when it's time for hospice is when the caregiver realizes that they're in over their head" -- it's not -- it's whenever you have decided there is nothing more that a doctor can do to prolong one's life.

When my husband was told on October 1 that there was nothing more "medically" that can be done for him, I asked who would continue to provide him with pain medication if he was no longer receiving "medical care"? The doctor said he can continue to send him prescriptions. A friend of mine told me to call hospice since he had a terminal diagnosis and at least get the ball rolling.

I called the next day and explained the situation and explained to them that I didn't know "when we would need them" -- they told me if he received a terminal diagnosis we "needed them now" - the sooner a terminal patient is under hospice care the better. I agree.

I told my husband what they told me and he said "well let them come down then". They called the doctor the next day, confirmed the diagnosis (that it was terminal and that no additional treatment or surgery would be performed), they had the doctor "release" him and they "admitted" him to hospice. The first visit from hospice was to assess him -- find out his pain levels, take vitals, etc. Then then reviewed his meds and made sure he had enough and the right amounts, etc. In the beginning they decided a nurse would come in only once a week to check on him, see how he is doing pain wise, check the meds, etc. If needed the nurse would come more often. They also sent an "aide" in twice a week to do laundry and food shop while I was at work -- what a gift that was -- took those 2 chores off my hands and made more time for me to be with my husband. They also assigned a social worker to the case who met with me and my husband -- alone and separately and helped with the emotional aspects of the dying process.

As he got worse, the nurse came in every day and then we made the decision to move him to an in-patient facility the week before he passed away because he needed round the clock care.

So all in all we had hospice from Oct 3 until Dec 12. I don't think I would have made it through without them

grandmafay

newbride said:

Barbara
Hospice is really misunderstood by many people. Like yourself I thought "when it's time for hospice is when the caregiver realizes that they're in over their head" -- it's not -- it's whenever you have decided there is nothing more that a doctor can do to prolong one's life.

When my husband was told on October 1 that there was nothing more "medically" that can be done for him, I asked who would continue to provide him with pain medication if he was no longer receiving "medical care"? The doctor said he can continue to send him prescriptions. A friend of mine told me to call hospice since he had a terminal diagnosis and at least get the ball rolling.

I called the next day and explained the situation and explained to them that I didn't know "when we would need them" -- they told me if he received a terminal diagnosis we "needed them now" - the sooner a terminal patient is under hospice care the better. I agree.

I told my husband what they told me and he said "well let them come down then". They called the doctor the next day, confirmed the diagnosis (that it was terminal and that no additional treatment or surgery would be performed), they had the doctor "release" him and they "admitted" him to hospice. The first visit from hospice was to assess him -- find out his pain levels, take vitals, etc. Then then reviewed his meds and made sure he had enough and the right amounts, etc. In the beginning they decided a nurse would come in only once a week to check on him, see how he is doing pain wise, check the meds, etc. If needed the nurse would come more often. They also sent an "aide" in twice a week to do laundry and food shop while I was at work -- what a gift that was -- took those 2 chores off my hands and made more time for me to be with my husband. They also assigned a social worker to the case who met with me and my husband -- alone and separately and helped with the emotional aspects of the dying process.

As he got worse, the nurse came in every day and then we made the decision to move him to an in-patient facility the week before he passed away because he needed round the clock care.

So all in all we had hospice from Oct 3 until Dec 12. I don't think I would have made it through without them

I would add that hospice is
I would add that hospice is provided by different groups in different areas. They all seem to operate on the same overall principal, but some provide more services than others. If you have more than one provider in your area, you might want to check them out. I agree, though, that the sooner you contact them, the better. Fay

Barbara53

grandmafay said:

I would add that hospice is
I would add that hospice is provided by different groups in different areas. They all seem to operate on the same overall principal, but some provide more services than others. If you have more than one provider in your area, you might want to check them out. I agree, though, that the sooner you contact them, the better. Fay

I totally agree
Oh, Grandmafay, the hospice people were wonderful eight years ago when my father died of pancreatic cancer. Things moved very fast and they kept pace beautifully. I wish I could call them tomorrow for help with my mother! The medical system is dragging its feet and we haven't been pushing because Mom has been doing well with quite a bit of family help, and her determination to get better has kept her flying pretty high emotionally. She's been feeling worse, though, and some tests done last week will likely yield disturbing results.

But miracles do happen. Tonight I talked by phone with a skilled caregiver who has helped another client with this type of cancer, AND shares my mother's passion for sewing down to the Bernina sewing machine. If things work out, I'll get a shore pass home for guilt-free R&R!

ruthelizabeth

Barbara53 said:

I totally agree
Oh, Grandmafay, the hospice people were wonderful eight years ago when my father died of pancreatic cancer. Things moved very fast and they kept pace beautifully. I wish I could call them tomorrow for help with my mother! The medical system is dragging its feet and we haven't been pushing because Mom has been doing well with quite a bit of family help, and her determination to get better has kept her flying pretty high emotionally. She's been feeling worse, though, and some tests done last week will likely yield disturbing results.

But miracles do happen. Tonight I talked by phone with a skilled caregiver who has helped another client with this type of cancer, AND shares my mother's passion for sewing down to the Bernina sewing machine. If things work out, I'll get a shore pass home for guilt-free R&R!

hospice, sort of.
I called hospice in this weekend. Don had such a struggle coughing and breathing. Even when we were being actively treated by his oncologist, he didn't do much about side effects. On the last visit we had with him, he agreed to prescribe oxygen, it might help, could help -- and then he didn't mention it again. Our family dr. has retired. So there was no one really to help us.

In an hour with the hospice nurse we heard more about what might help than in all the time at the oncologist's. She and the dr. made some changes in Don's meds and sent out a nebulizer and oxygen and have promised us an inhaler to take with us up to Moffitt.

Don isn't alllll that comfortable with the idea of hospice because he's not ready to stop fighting, but as I told him, it's a win-win situation now. For these couple of days he'll have things which may make him more comfortable and which will let him get up to hospice. If we don't want to sign back up for hospice when we get back in the county, we won't have to.

Ruth