Nearing the end?

Papa Bear

My wife has had metastatic breast cancer in her bones for three years. I've read some posts from others where the cancer had gone to their bones. It's a very painful and debilitating disease. She's gone through 3 surgeries now to stabilize  her large bones: right femur rod and pins, right humerus rod and pins, and most recently her left humerus rod and pins; 7 different radiation treatments for various parts of her skeletal system. The cancer is throughout all of her skeletal system and several vertabra have collapsed. Nearly all of her ribs are fractured from the tumors and her stermum is all but gone. In July 2015, a PET scan showed that the cancer had moved into both lungs, both lobes of the liver, and several lymph nodes. She's been on oxygen now for about 3 months and has had fluid drained from both lungs to help her breath. She was scheduled for another PET scan a couple of weeks ago, but unfortunately, the humerus in her left arm broke due to a tumor and so that had to be taken care of first. We'll be going through radiation again once the incision heals sufficiently. We haven't been able to control her pain very well because she doesn't want to be so doped up that sh'e not aware of what's going on. She sleeps quite a bit, probably 18-20 hours a day now, but recently has had to move from the bed to a chair every couple of hours because of pain. She's on water pills to control the swelling in her arms and legs and is having more of a challenge breathing lately. She told me this morning that she is having hallucinations when she sleeps. Her hallucinations are so clear, that she's certain the individuals are there with her, but when she wakes up, they're not. Those that she told me of specifically are not nasty, but I think she has some pretty scary ones as well. I know that hallucinations are part of the end stage process, but can anyone tell me how close to the end they begin or how long they may last before the end comes?

Noellesmom

Concerned

What is the end goal here, Papa Bear?  Has she had a terminal diagnosis?

It sounds as though your wife is going through many awful things but not getting better, only worse.

Have any of her doctors mentioned hospice?

As for the hallucinations, I've seen loved ones nearing the end have hallucinations and see a variety of things.

Papa Bear

Noellesmom said:

Concerned

What is the end goal here, Papa Bear?  Has she had a terminal diagnosis?

It sounds as though your wife is going through many awful things but not getting better, only worse.

Have any of her doctors mentioned hospice?

As for the hallucinations, I've seen loved ones nearing the end have hallucinations and see a variety of things.

Thanks for responding

Thank you for responding Noellesmom, I appreciate it. I guess the end goal is for me to know a little better what's going on. My wife was told in February 2013 that her cancer was terminal and she had maybe two years to live. That's when she was diagnosed with metastatic breast cancer to the bone. Her oncologist has not mentioned hospice yet, although she has mentioned a couple of times, that at some point, my wife should consider stopping treatment. Nothing that we've tried so far has been successful in stopping the progression. My wife has an incredible desire to live and doesn't want to give up. It's not a fanitical desire, she just doesn't know what giving up is. She is "up" and positive nearly all of the time. I know I must sound like I'm looking for a sign that this is ending, but that's not the case. Because my wife is so positive and full of life, it's sometimes difficult for me to grasp how bad her condition is. This is the first time that I'm experiencing this, so I don't have anything to compare her condition, signs, symptoms, and drive to.  My wife and I discuss her signs and symptoms and what they may mean, but she's not ready to quit and I'm still able to take care of her.  Our oncologist will not give us any solid answer regarding her condition or how long she may have. Her typical answer is "I had a patient once that lived 5 years with metastatic breast cancer to the bone" or "you've lived three years with this, you truely are a survivor". I'm not faulting the doctor, she's just not one to put an end date on something because that makes it final and brings the patient down.  A couple of our friends have lost a parent recently, and in each case, they used hospice; one in the home and one as an inpatient. Although none of the individuals had cancer, and both passed within a few days of hospice being involved, we learned quite a bit about the benefits of hospice and have even decided which hospice to use when the time comes.

I've read a number of discussions and articles on what to expect toward the end, but I really don't know what to expect. I'm sure that everyone's experience is different, so it may be difficult to give advice based on the information that I've given. From what I've read, it seems that hallucinations and dilusions are part of the final stage. Since my wife made a point of telling me about her hallucinations, I know that they must be pretty frequent and powerful.

Thanks agin for responding Noellesmom. Anything that you can share will help.

Noellesmom

Papa Bear said:

Thanks for responding

Thank you for responding Noellesmom, I appreciate it. I guess the end goal is for me to know a little better what's going on. My wife was told in February 2013 that her cancer was terminal and she had maybe two years to live. That's when she was diagnosed with metastatic breast cancer to the bone. Her oncologist has not mentioned hospice yet, although she has mentioned a couple of times, that at some point, my wife should consider stopping treatment. Nothing that we've tried so far has been successful in stopping the progression. My wife has an incredible desire to live and doesn't want to give up. It's not a fanitical desire, she just doesn't know what giving up is. She is "up" and positive nearly all of the time. I know I must sound like I'm looking for a sign that this is ending, but that's not the case. Because my wife is so positive and full of life, it's sometimes difficult for me to grasp how bad her condition is. This is the first time that I'm experiencing this, so I don't have anything to compare her condition, signs, symptoms, and drive to.  My wife and I discuss her signs and symptoms and what they may mean, but she's not ready to quit and I'm still able to take care of her.  Our oncologist will not give us any solid answer regarding her condition or how long she may have. Her typical answer is "I had a patient once that lived 5 years with metastatic breast cancer to the bone" or "you've lived three years with this, you truely are a survivor". I'm not faulting the doctor, she's just not one to put an end date on something because that makes it final and brings the patient down.  A couple of our friends have lost a parent recently, and in each case, they used hospice; one in the home and one as an inpatient. Although none of the individuals had cancer, and both passed within a few days of hospice being involved, we learned quite a bit about the benefits of hospice and have even decided which hospice to use when the time comes.

I've read a number of discussions and articles on what to expect toward the end, but I really don't know what to expect. I'm sure that everyone's experience is different, so it may be difficult to give advice based on the information that I've given. From what I've read, it seems that hallucinations and dilusions are part of the final stage. Since my wife made a point of telling me about her hallucinations, I know that they must be pretty frequent and powerful.

Thanks agin for responding Noellesmom. Anything that you can share will help.

Hospice

No longer means the end is days away.  It is time to broach the subject with your wife.  Some doctors wait for the patient or family to bring this up although they are supportive of the move.

While I applaud your wife's desire to love, I also am acutely aware of the toll it is likely taking on her, on you and all things surrounding and touching you.

On the American Cancer Society's homepage there is a caregiver's section.  Within that section there is information on what to expect at the end of life.  Let me know if you cannot find.

I also encourage you to call hospice and just talk to them.  Contact your wife's doctor and discuss.  Get information together and be ready to talk with your wife.  Acquaint yourself with palliative care as an option.  Look up local hospice providers online.  There is a wealth of information available.

Lastly, but just as important,please take care of yourself.

 

 

Papa Bear

Noellesmom said:

Hospice

No longer means the end is days away.  It is time to broach the subject with your wife.  Some doctors wait for the patient or family to bring this up although they are supportive of the move.

While I applaud your wife's desire to love, I also am acutely aware of the toll it is likely taking on her, on you and all things surrounding and touching you.

On the American Cancer Society's homepage there is a caregiver's section.  Within that section there is information on what to expect at the end of life.  Let me know if you cannot find.

I also encourage you to call hospice and just talk to them.  Contact your wife's doctor and discuss.  Get information together and be ready to talk with your wife.  Acquaint yourself with palliative care as an option.  Look up local hospice providers online.  There is a wealth of information available.

Lastly, but just as important,please take care of yourself.

 

 

Hi Noellesmom,

This information is very helpful, thank you. I thought that I had looked at everything, but for some reason had not hit this section in the American Cancer Society. I agree that it's time for me to bring it up.

Ladylacy

Hospice

I would talk to her doctor about hospice.  My husband was on hospice from 9/13 to the end of July 2015 when he passed.  It was in-home and I can't say enough about how great they were.  Of course, when you go on hospice you stop all treatment, something my husband decided for himself when his 2nd primary reoccurred and spread to his right lung.  He did pretty good up until the last month or so.  Thankfully he rarely complained of pain but then I gave him his pain medication every 4 hours round the clock, sometimes it was every 2 hours at the end.  Hospice provided the pain medication and everything we needed to make him comfortable.  He was also on Ativan for sleep and nerves.   The last week of his life, our nurse asked me did I want to put him in-patient where they could deal with his pain better, but I had promised him I would keep him at home. 

It was hard to watch him decline and at times I prayed for God to take him, as bad as that sounds.  In the end he only weighed maybe 90 lbs.  Just remember to take care of yourself because you are important too.  Hospice has people that will come in and relieve you for an hour or so, but I never did that.  In fact at the end I was told Medicare would pay for nurses round the clock, but to be honest I didn't want all the strangers in my home.  Thankfully two of our sons and their wives were with me at the end. 

After watching what my husband went thru, I always said I couldn't/wouldn't do it.

Wishing your wife, you and your family, peace and comfort.

Noellesmom

Papa Bear said:

Hi Noellesmom,

This information is very helpful, thank you. I thought that I had looked at everything, but for some reason had not hit this section in the American Cancer Society. I agree that it's time for me to bring it up.

Answers

Let us know how things are going for you and your wife, Papa.

Please take some time for yourself.

You and your wife will be in my thoughts and prayers.

Papa Bear

Noellesmom said:

Answers

Let us know how things are going for you and your wife, Papa.

Please take some time for yourself.

You and your wife will be in my thoughts and prayers.

Hi Noellesmom,

Thank you. We talked about entering a hospice program and my wife simply isn't ready for that step yet. It's a final step and although she understand her life is nearing the end, she just isn't ready to openly accept it. It will happen when she's ready. Funny you should mention taking time for myself. I decided to take some time out just the other day and take the motorcycle out for a ride. Battery died (haha). It must have heard us talking......It'll have to wait for another day.

Noellesmom

Same position

My husband is not agreeable to hospice yet although he is close.  Although he has no cancer, the treatment devastated his autonomic nervous system.  Three ER trips with DNR bracelets each visit.  Nothing more can be done for him other than pain management.

Taking care of yourself: a month ago I was sent to a retina specialist.  It appears the stress levels have caused a hole to blow in my retina.  The specialist said there is no other cause for this type of injury.

Again, take care of yourself.

 

Papa Bear

Ladylacy said:

Hospice

I would talk to her doctor about hospice.  My husband was on hospice from 9/13 to the end of July 2015 when he passed.  It was in-home and I can't say enough about how great they were.  Of course, when you go on hospice you stop all treatment, something my husband decided for himself when his 2nd primary reoccurred and spread to his right lung.  He did pretty good up until the last month or so.  Thankfully he rarely complained of pain but then I gave him his pain medication every 4 hours round the clock, sometimes it was every 2 hours at the end.  Hospice provided the pain medication and everything we needed to make him comfortable.  He was also on Ativan for sleep and nerves.   The last week of his life, our nurse asked me did I want to put him in-patient where they could deal with his pain better, but I had promised him I would keep him at home. 

It was hard to watch him decline and at times I prayed for God to take him, as bad as that sounds.  In the end he only weighed maybe 90 lbs.  Just remember to take care of yourself because you are important too.  Hospice has people that will come in and relieve you for an hour or so, but I never did that.  In fact at the end I was told Medicare would pay for nurses round the clock, but to be honest I didn't want all the strangers in my home.  Thankfully two of our sons and their wives were with me at the end. 

After watching what my husband went thru, I always said I couldn't/wouldn't do it.

Wishing your wife, you and your family, peace and comfort.

Hi Ladylacy,

Thank you. I haven't talked to my wife's doctor about hospice, I know that it would upset her and I don't want that to happen at this point. I feel that I need to respect her wishes regarding hospice and not push her into this since the outcome of the decision is pretty final. I understand that when we enter a hospice program, treatment stops and the focus is palletive care. Ironically, we just recently stopped her chemo pills due to severe side effects. The drug that we were on was pretty much the last resort chemo medication, so without it, the only drug she is taking for the cancer treatment is an estrogen blocker. I'm not sure that the doctor will find another oral chemo drug that will work for treatment, and I don't believe she will be able to handle infusion chemotherapy any longer.

Unfortunatly, my wife is in constant pain that we simply haven't been able to control well. She's on some pretty heavy narcotics and we're struggling with finding a medication that will help without knocking her out. She does not want to be drugged to the point that she isn't able to function, think, and carry on a conversation. Her oncologist is amazed that she can funtion on the level of pain medication that she's taking. She's on a very high dose patch for continuous pain and is on the highest dose of a breakthrough pain medication that she can take. I give her the breakthrough medication every two-three hours. As her doctor said, she needs to be on a pump that allows her to regulate the medication as she needs it. We would probably need to be on hospice to have that since I believe it requires nurse oversight.

It is hard to watch her decline as you mentioned. I don't think it sounds bad at all to ask that it ends. I pray quite often that she passes in her sleep so that her suffering ends. In my wife's case, she has lost around 110 pounds and is extremely fragile now. She had surgery last week for a fractured left humerus. She has a tumor on the inside of the humerus that grew to the point it fractured the bone. The surgeon placed a rod and pins in the humerus to stabilize it, but said that her bone is so thin and fragile, it may not heal following radiation. This is quite a decline. She had a rod and pins placed ini her right fumur three years ago and a rod and pins placed in her right humerus less than a year ago. In each case, once the tumor was killed from radiation treatment following the surgery, the bone regrew very quickly to where it had completely filled in the deteriorated section within a few months.

I guess to sum everything up, I really believe that my wife hopes to pass without having to go into a hospice program. It's difficult at times to realize that she is nearing the end when you speak with her. She is still so full of life and tells me that except for the pain in her bones, she feels good. Although her sense of humor has waned, she's as pleasent as she was before her cancer metastisized. Then reality steps back in. She has tumors in both lungs with the lower lobe of the left lung completely collapsed; she's on oxygen 24/7 and has difficulty breathing without the oxygen. She has tumors in both lobes of her liver and the lymph nodes in the neck, clavicle, and chest area are swollen and cancerous. There are tumors in virtually every part of her skeletal system and cranium, even those bones that have received radiation in the past three years, and the majority of her ribs and sternum are fractured from tumors. I don't feel the end is far off, but I don't have any idea how close it is. I really think that at some point, things will all come to a head and she'll simply pass and pass quickly. At least I hope. OK, I think I'm rambling, so it's time to sign off. Thank you so much Ladylacy for your feedback and insight. I know several people that quickly decided not to go through treatment and additional suffering, and I'm not sure that I could do it either. Hopefull we'll never know.

 

 

Papa Bear

Noellesmom said:

Same position

My husband is not agreeable to hospice yet although he is close.  Although he has no cancer, the treatment devastated his autonomic nervous system.  Three ER trips with DNR bracelets each visit.  Nothing more can be done for him other than pain management.

Taking care of yourself: a month ago I was sent to a retina specialist.  It appears the stress levels have caused a hole to blow in my retina.  The specialist said there is no other cause for this type of injury.

Again, take care of yourself.

 

I'm so sorry to hear about your retina Noellesmom. I sure hope that they'll be able to find a way to correct it.  I'm trying to take care of myself and control the stress, but it's a challenge. I have to say though, this discussion board has already helped with lowering my stress level.

I think that hospice is a pretty scary thing for most people. Although it doesn't mean that they've given up when they enter hospice, I know that in my wife's case, she would have to give up before moving into a hospice program. Of course, two of our friends recently lost their parents, and each of them was in hospice - for less than a week when they passed. Hospice is now associated with a quick death for her. My wife is a very private person and as long as I can do what needs to be done for her, I believe that she'll want to stay out of hospice with the goal of passing before others have to be brought in. It's pretty scary thinking about what I should expect and what needs to be done when she passes, or what I have to do if she passes while I'm not at home (I'm still working), but I figure I'll cross those bridges when I need to.

I hope that things turn out alright with the retna Noellesmom.

Noellesmom

Papa Bear said:

I'm so sorry to hear about your retina Noellesmom. I sure hope that they'll be able to find a way to correct it.  I'm trying to take care of myself and control the stress, but it's a challenge. I have to say though, this discussion board has already helped with lowering my stress level.

I think that hospice is a pretty scary thing for most people. Although it doesn't mean that they've given up when they enter hospice, I know that in my wife's case, she would have to give up before moving into a hospice program. Of course, two of our friends recently lost their parents, and each of them was in hospice - for less than a week when they passed. Hospice is now associated with a quick death for her. My wife is a very private person and as long as I can do what needs to be done for her, I believe that she'll want to stay out of hospice with the goal of passing before others have to be brought in. It's pretty scary thinking about what I should expect and what needs to be done when she passes, or what I have to do if she passes while I'm not at home (I'm still working), but I figure I'll cross those bridges when I need to.

I hope that things turn out alright with the retna Noellesmom.

Thank you

But the blind spot is permanent.  It is just a reminder there are some things beyond my control and that I am human.

I understand your wife's desire for privacy.  I understand you respect that.  At some point, though, you will likely not be able to provide all care needed  but as long as you know what is available, you will know what to do and whom to call.

LindaK.

Hospice

Thought I would add my 2 cents here.  My husband was on home hospice for about 3 weeks.  He also used high doses of pain patches and both pill and liquid dilauded.  The agency we were with was not very helpful, I had multiple issues with getting a hold of someone during the overnight shifts.  I mean, people who are on home hospice are sick 24 hours, not just 8 am - 5 pm.  Our daughter is a nurse so she was the 2nd caregiver which was a godsend for me.  She pushed for him to go home from the hospital with a pain pump, which they weren't too willing to do.  At the last minute my husband decided he could handle it with the patches, pills and liquid.  He did pretty well during those 3 weeks but I could no longer care for him around the clock because he started falling and I could not get him up by myself.  He finally agreed to go to inpatient hospice and I drove him there.  It was one of the hardest things I ever had to do.  He was immediately put on the pain pump.  The staff there was fantastic.  They did their jobs and let me just be his wife.  I never left his side for 11 days.  I knew he passed not suffering.  Someone told me not too long ago that hospice is controlled suicide.  I don't agree with that.  My experience with inpatient hospice was peaceful and loving.  I do not regret taking him there. 

As far as your wife is concerned, as long as she is positive and wants treatement, you will have to support her.  As long as you can handle it at home, you should honor her wishes.  Even if she still wants treatment and you can't handle it, maybe she can be inpatient in the hospital.  Our cancer center had its own hospital where my husband was inpatient 3 or 4 times. 

You sound like an excellent caregiver.  Keep up the good work, I'm sure your wife is very appreciative

Linda

Noellesmom

LindaK. said:

Hospice

Thought I would add my 2 cents here.  My husband was on home hospice for about 3 weeks.  He also used high doses of pain patches and both pill and liquid dilauded.  The agency we were with was not very helpful, I had multiple issues with getting a hold of someone during the overnight shifts.  I mean, people who are on home hospice are sick 24 hours, not just 8 am - 5 pm.  Our daughter is a nurse so she was the 2nd caregiver which was a godsend for me.  She pushed for him to go home from the hospital with a pain pump, which they weren't too willing to do.  At the last minute my husband decided he could handle it with the patches, pills and liquid.  He did pretty well during those 3 weeks but I could no longer care for him around the clock because he started falling and I could not get him up by myself.  He finally agreed to go to inpatient hospice and I drove him there.  It was one of the hardest things I ever had to do.  He was immediately put on the pain pump.  The staff there was fantastic.  They did their jobs and let me just be his wife.  I never left his side for 11 days.  I knew he passed not suffering.  Someone told me not too long ago that hospice is controlled suicide.  I don't agree with that.  My experience with inpatient hospice was peaceful and loving.  I do not regret taking him there. 

As far as your wife is concerned, as long as she is positive and wants treatement, you will have to support her.  As long as you can handle it at home, you should honor her wishes.  Even if she still wants treatment and you can't handle it, maybe she can be inpatient in the hospital.  Our cancer center had its own hospital where my husband was inpatient 3 or 4 times. 

You sound like an excellent caregiver.  Keep up the good work, I'm sure your wife is very appreciative

Linda

Not a lot of places

Have inpatient hospice.  Our regional hospital is adding it soon.

Anxious to hear people's experiences with it.

Ladylacy

Inpatient hospice

The way inpatient hospice was explained to me and a friend who was going thru the same thing with her partner, it is only for the last week or so.  Inpatient was only offered to my husband during the last two weeks of his life and we declined because he wanted to pass at home.  We had no problems with in-home hospice and getting help on a 24/7 basis when needed.  We even needed a hospice nurse on week-ends to replace feeding tubes and they were at our home at 9 pm on a Saturday night.  My friend was told the same thing and since she wasn't able to care for her partner (she is 86) she had to find a personal care home at their own expense to care for him.  Some hospice organizations don't have inpatient care available.  11 years ago where I live, there was only one inpatient hospice care center and there was a long waiting list because my mother needed inpatient hospice.   She passed at home (something we decided since the facility was so far from us) and a neighbor of ours, her husband passed before getting into the same facility. 

I worked with a woman whose husband died  of cancer and he was moved into inpatient two days before he passed.  I was also told that 24/7 care could be given in home by hospice nurses and it was covered.  Guess you would have to check your insurance on that one.  Medicare does cover it.

 

Papa Bear

LindaK. said:

Hospice

Thought I would add my 2 cents here.  My husband was on home hospice for about 3 weeks.  He also used high doses of pain patches and both pill and liquid dilauded.  The agency we were with was not very helpful, I had multiple issues with getting a hold of someone during the overnight shifts.  I mean, people who are on home hospice are sick 24 hours, not just 8 am - 5 pm.  Our daughter is a nurse so she was the 2nd caregiver which was a godsend for me.  She pushed for him to go home from the hospital with a pain pump, which they weren't too willing to do.  At the last minute my husband decided he could handle it with the patches, pills and liquid.  He did pretty well during those 3 weeks but I could no longer care for him around the clock because he started falling and I could not get him up by myself.  He finally agreed to go to inpatient hospice and I drove him there.  It was one of the hardest things I ever had to do.  He was immediately put on the pain pump.  The staff there was fantastic.  They did their jobs and let me just be his wife.  I never left his side for 11 days.  I knew he passed not suffering.  Someone told me not too long ago that hospice is controlled suicide.  I don't agree with that.  My experience with inpatient hospice was peaceful and loving.  I do not regret taking him there. 

As far as your wife is concerned, as long as she is positive and wants treatement, you will have to support her.  As long as you can handle it at home, you should honor her wishes.  Even if she still wants treatment and you can't handle it, maybe she can be inpatient in the hospital.  Our cancer center had its own hospital where my husband was inpatient 3 or 4 times. 

You sound like an excellent caregiver.  Keep up the good work, I'm sure your wife is very appreciative

Linda

Thanks Linda K. I'm sorry for your loss. We have 3 hospice organizations in our town (not quite sure why) that offer both home and inpatient. We had a friend whose mother was on home hospice for a couple of weeks, and she cant's praise them enough. Her mother had dimentia and just finally shut down. Another friend's father was moved from a hospital to inpatient hospice and passed a few days later. She had nothing but praise for the hospice as well. They both used the same hospice. I don't agree with hospice being controlled suicide either. They allow the patient to pass with dignity and peacefully, and the family to focus on saying their goodbyes and coming to terms with their loss. It's a great service that takes some pretty special people to work it. I think it would be very stressful on the hospice workers. 

I believe my wife is real close to stopping treatment. She realizes that none of the treatment has been successful and doesn't believe there are many options left. She is still considering additional radiation treatments to kill tumors in localized areas for pain relief. It's a balancing act trying to determine if the radiation treatments will create more problems that end up outweighing the benefit of the pain relief from the tumor. All areas that need radiation to kill the tumors also involve multiple organs. As an example, her L2 disc collapsed and the tumor was impinging the nerves. She had radiation on the L2 and L3 vertebrea and it killed the tumor proving pain relief and the eliminating the nerve impingment. The bad thing though is that she spent a month receiving infusions, and being and out of the ER. She was finally admitted and spent 5 days in the hospital due to severe radiation colitis.

We have a couple of hospitals in our town, and my wife's doctor tries very hard to keep her out of either one. My wife's immunity is gone now and her doctor is very concerned that she'll pick something up while she's in the hospital. All of the radiation and surgery is connected with one hospital, and unfortunately, it has a bad reputation for infecting patients. The hospital has been working very hard to correct its past, but it's a little scary when you have no immunity.

My wife's bother, a recently retired MD, is coming to visit soon. I'm hoping to get some good insight on her condition and maybe some good tips on providing care for her. He may also be able to provide her with more information to help her make additional treatment decisions. She's a little anxious about his visit though. He's very matter of fact and open about explaining her condition and what she should expect. It will probably be more of a reality check than she would like. I think he'll give her information that her oncologist has not. My wife told the oncologist once that she didn't want to know specifically how bad she was and the oncologist has honored that since.

Thanks for you support and kind words. I think we all do the best that we can. I can't imagine how difficult it must be for my wife or any cancer patient to realize that they MUST rely 100% on someone else for basic things like food and drink, mobility, medication, and all of those things that we've done since we were infants.

Papa Bear

Ladylacy said:

Inpatient hospice

The way inpatient hospice was explained to me and a friend who was going thru the same thing with her partner, it is only for the last week or so.  Inpatient was only offered to my husband during the last two weeks of his life and we declined because he wanted to pass at home.  We had no problems with in-home hospice and getting help on a 24/7 basis when needed.  We even needed a hospice nurse on week-ends to replace feeding tubes and they were at our home at 9 pm on a Saturday night.  My friend was told the same thing and since she wasn't able to care for her partner (she is 86) she had to find a personal care home at their own expense to care for him.  Some hospice organizations don't have inpatient care available.  11 years ago where I live, there was only one inpatient hospice care center and there was a long waiting list because my mother needed inpatient hospice.   She passed at home (something we decided since the facility was so far from us) and a neighbor of ours, her husband passed before getting into the same facility. 

I worked with a woman whose husband died  of cancer and he was moved into inpatient two days before he passed.  I was also told that 24/7 care could be given in home by hospice nurses and it was covered.  Guess you would have to check your insurance on that one.  Medicare does cover it.

 

Hi Ladylacy,

Thanks for your feedback. I believe inpatient hospice will depend on a number of circumstances, but is most likely for those patients that have a very short time left and home care isn't feasible. I think you're right about the insurance, the coverage will make a big difference related to more specialized care. I do know that at least some insurance companies require that the hospice be certified for Medicare and meet other certifications (I don't remember the proper wording for it). I know that our is that way. My wife is also on Medicare now. Boy did that make a difference with the costs! I hope not to have to do inpatient hospice.