I don't know what to do
My husband is close to the end stage of gastric cancer. We have been told to look into Hospice and I said I wanted home care for him. He is getting more and more fatigued as everyday goes by and he is sleeping more and more. He is so stubborn. I say is there anything I can do? He says No. I say I am going to call the Dr tomorrow he says no, what can the Dr do? I do not want my hubby to suffer, nor do I want there to be charges with neglect. What do I do? My hubby says he just wants to go, I said I need to bring someone from Hospice in and he says no...What do I do? I want to abide by his wishes, but I also want to keep him comfortable and I have no medical knowledge of how to deal with this. I know the Dr said he does not have much time left, he does not like taking any meds, I know he is depressed and he refuses to take anything for it... I do not know what to do...he is stubborn and always refuses help and does not want me to call the Dr etc. Help!!! i am only 33 and I do not know what to do.
I don't know what to do
My husband is close to the end stage of gastric cancer. We have been told to look into Hospice and I said I wanted home care for him. He is getting more and more fatigued as everyday goes by and he is sleeping more and more. He is so stubborn. I say is there anything I can do? He says No. I say I am going to call the Dr tomorrow he says no, what can the Dr do? I do not want my hubby to suffer, nor do I want there to be charges with neglect. What do I do? My hubby says he just wants to go, I said I need to bring someone from Hospice in and he says no...What do I do? I want to abide by his wishes, but I also want to keep him comfortable and I have no medical knowledge of how to deal with this. I know the Dr said he does not have much time left, he does not like taking any meds, I know he is depressed and he refuses to take anything for it... I do not know what to do...he is stubborn and always refuses help and does not want me to call the Dr etc. Help!!! i am only 33 and I do not know what to do.
Regardless of what he wants, you need to get him signed up asap with hospice.
Just explain to him that even if he doesn't want it, YOU do because this is a very emotional, stressful time for you and you need the help.
Please---do it for yourself, at least. You'll be so glad you did.
Best of luck to you.
Regardless of what he wants, you need to get him signed up asap with hospice.
Just explain to him that even if he doesn't want it, YOU do because this is a very emotional, stressful time for you and you need the help.
Please---do it for yourself, at least. You'll be so glad you did.
Best of luck to you.
Thank you. I love my hubby but he can be very stubborn and has always wanted things done his way. It is difficult, but I am going to call his Dr today and find out about how to start up care with Hospice.
Thank you. I love my hubby but he can be very stubborn and has always wanted things done his way. It is difficult, but I am going to call his Dr today and find out about how to start up care with Hospice.
I agree, Hospice is the way to go. Is there any reason he doesn't want Hospice? Is he worried it will speed things up? People often have misconceptions about Hospice, and the thought that if Hospice is involved, it will 'kill' them quicker. The fact is Hospice can be a great thing. It focuses on giving a person quality of life, for however long that may be. Its been an awesome thing for my grandpa. We've been able to keep him out of the hospital, and honestly, I believe he would have died months ago without Hospice. Hospice can address any pain, they have staff to help with bathing, they can help with medical equipment, can help address depression, and can help you!
I agree, Hospice is the way to go. Is there any reason he doesn't want Hospice? Is he worried it will speed things up? People often have misconceptions about Hospice, and the thought that if Hospice is involved, it will 'kill' them quicker. The fact is Hospice can be a great thing. It focuses on giving a person quality of life, for however long that may be. Its been an awesome thing for my grandpa. We've been able to keep him out of the hospital, and honestly, I believe he would have died months ago without Hospice. Hospice can address any pain, they have staff to help with bathing, they can help with medical equipment, can help address depression, and can help you!
My husband knows that I would want to be at home, and with hospice. He feels the same way if he needed it. I have worked with hospice several years ago. They worked with the family, helping them understand how the care is just to make it all easier for everyone. Pain control,physical care issues,emotional issues. It is like having a good friend,to be there when you need them.
My husband knows that I would want to be at home, and with hospice. He feels the same way if he needed it. I have worked with hospice several years ago. They worked with the family, helping them understand how the care is just to make it all easier for everyone. Pain control,physical care issues,emotional issues. It is like having a good friend,to be there when you need them.
please do get hospice in, because YOU need that help so HE can actually suffer less and you can both benefit from the enhancement and profoundly skilled care and comofrt of hospice. a lot of people feel that hospice means you are actually admitting you will die -- and of course it is. that's the bit they're often uncomfortable with. but actually people go onto hopsice anc can come off it if they do well and so on. so if your husband learns those things, it might help him. either way, frankly, i think it's the onyl way you'll both truly benefit. and tell him (if that's his issue) that he doesn't actually need to feel ogliged to die(!)i wish you strength and love for the journey!
please do get hospice in, because YOU need that help so HE can actually suffer less and you can both benefit from the enhancement and profoundly skilled care and comofrt of hospice. a lot of people feel that hospice means you are actually admitting you will die -- and of course it is. that's the bit they're often uncomfortable with. but actually people go onto hopsice anc can come off it if they do well and so on. so if your husband learns those things, it might help him. either way, frankly, i think it's the onyl way you'll both truly benefit. and tell him (if that's his issue) that he doesn't actually need to feel ogliged to die(!)i wish you strength and love for the journey!
When my mother was at end stage of stomach cancer we suggested hospice ( she chose to die at home and we, her children, agreed to take care of her.) She said "absolutely no" to hospice. So we said there was a social worker who wanted to visit. Mom, said, o.K. The Hospice Social Worker spent 20 minutes alone with my mom, and my mom fell in love with her. From then on she would say: "when are the hospice people coming to visit? they are so nice". Hospice helped tremendously in so many ways. Do not delay and call them.
When my mother was at end stage of stomach cancer we suggested hospice ( she chose to die at home and we, her children, agreed to take care of her.) She said "absolutely no" to hospice. So we said there was a social worker who wanted to visit. Mom, said, o.K. The Hospice Social Worker spent 20 minutes alone with my mom, and my mom fell in love with her. From then on she would say: "when are the hospice people coming to visit? they are so nice". Hospice helped tremendously in so many ways. Do not delay and call them.
I have been in your situation to an extent, but as an RN in the hospital or working some type of homecare. I've faced some of your husband's reasons why he doesn't want hospice. Here's my suggestion. Your husband's physician can order a hospice evaluation, informing hospice of your husband's hesitance to use their services. Then hospice will send (to your home or possibly your doctor's office if home is an issue) a nurse or social worker to educate, inform, and, possibly, convince your husband how much better the rest of his life will be for both of you if he consents to hospice care. As someone already mentioned, people can 'graduate' from hospice if they get better, and it seems like the goal needs to change from comfort care back to cure and treatment. If he still refuses hospice services (which ARE predominately done in the home), ask that hospice representative if there are any services available for you or what they would recommend you do next. Hospice if one of the best kept secrets in our 'health'care system. Unfortunately for all involved, often they get the referral so late, and the patient and family miss out on the tremendous support and real caring that hospice staff give.
I have been in your situation to an extent, but as an RN in the hospital or working some type of homecare. I've faced some of your husband's reasons why he doesn't want hospice. Here's my suggestion. Your husband's physician can order a hospice evaluation, informing hospice of your husband's hesitance to use their services. Then hospice will send (to your home or possibly your doctor's office if home is an issue) a nurse or social worker to educate, inform, and, possibly, convince your husband how much better the rest of his life will be for both of you if he consents to hospice care. As someone already mentioned, people can 'graduate' from hospice if they get better, and it seems like the goal needs to change from comfort care back to cure and treatment. If he still refuses hospice services (which ARE predominately done in the home), ask that hospice representative if there are any services available for you or what they would recommend you do next. Hospice if one of the best kept secrets in our 'health'care system. Unfortunately for all involved, often they get the referral so late, and the patient and family miss out on the tremendous support and real caring that hospice staff give.
Hospice is not intrusive. Your husband will not mind your getting this help for yourself. Your doctor's call to them will get the ball rolling. People will visit and talk to you and only provide the help that is acceptable to you. Good luck with this. My only advice to you until you get this help is to try to help your husband to feel loved and safe, warm and dry. Read to him if he likes books or articles. Hold his hand
Hospice is not intrusive. Your husband will not mind your getting this help for yourself. Your doctor's call to them will get the ball rolling. People will visit and talk to you and only provide the help that is acceptable to you. Good luck with this. My only advice to you until you get this help is to try to help your husband to feel loved and safe, warm and dry. Read to him if he likes books or articles. Hold his hand
Thank you everyone. Luckily, my hubby has agreed to Hospice and I am so grateful. He is in the hospital right now. He was dehydrated. I am hoping he can come home today. He wants to talk to a couple more Dr's before going into Hospice, but we have decided to do home care. Thank you alll for your support and helpfulness. I can't tell you how much I appreciate it :)
Thank you everyone. Luckily, my hubby has agreed to Hospice and I am so grateful. He is in the hospital right now. He was dehydrated. I am hoping he can come home today. He wants to talk to a couple more Dr's before going into Hospice, but we have decided to do home care. Thank you alll for your support and helpfulness. I can't tell you how much I appreciate it :)
Often we hear both drs and patients not want to consider hospice because to them, it means giving up hope. But it's not about giving up, it's about staying comfortable and additional support. A cure can come with or without hospice...
Perhaps you can ask if he'd like to find out/learn more about hospice with you and what it's all about...the hospice team, its dr and nurse will discuss with him and you and then he can make a decision...and you can also decide to withdraw from hospice...
Best to you all. vj
Often we hear both drs and patients not want to consider hospice because to them, it means giving up hope. But it's not about giving up, it's about staying comfortable and additional support. A cure can come with or without hospice...
Perhaps you can ask if he'd like to find out/learn more about hospice with you and what it's all about...the hospice team, its dr and nurse will discuss with him and you and then he can make a decision...and you can also decide to withdraw from hospice...
Best to you all. vj
so happy! so glad for your husband and you both to have that help. The Hospice mission is not about dying, it is about living life to the fullest in comfort and support in a difficult time. bless you for your courage!
so happy! so glad for your husband and you both to have that help. The Hospice mission is not about dying, it is about living life to the fullest in comfort and support in a difficult time. bless you for your courage!
I'm glad to hear that he was willing to accept Hospice. I totally get the whole "talking to a few more doctors first" thing, my grandpa did the same. I hope that you are able to enjoy whatever time you have left with him.
I'm glad to hear that he was willing to accept Hospice. I totally get the whole "talking to a few more doctors first" thing, my grandpa did the same. I hope that you are able to enjoy whatever time you have left with him.
Skylar, you are facing a difficult time with compassion, love and dignity. It must be even harder when you are so young. Just remember, this is about your love and caring for him, and everything I've ever heard or read about hospice (with 1 exception) has convinced me that their mission is to increase the quality of life and comfort not only of the ill person, but of their loved ones too. I'm so glad he's decided to do it! I hope he can come home soon--God bless you both and give you grace and strength. Post back if you have time and wish to; we'll be here for you.
Skylar, you are facing a difficult time with compassion, love and dignity. It must be even harder when you are so young. Just remember, this is about your love and caring for him, and everything I've ever heard or read about hospice (with 1 exception) has convinced me that their mission is to increase the quality of life and comfort not only of the ill person, but of their loved ones too. I'm so glad he's decided to do it! I hope he can come home soon--God bless you both and give you grace and strength. Post back if you have time and wish to; we'll be here for you.
I am not a big hospice fan, I never had the "warm and fuzzy" support that you all are cheerleading about. My mother lived with me until she died and we had hospice for over 9 months. The nurse came several times a week to check her vitals and never even talked to me unless I specifically called her. (My husband worked nights so he was home with my mom during the day while I was at work and that's when hospice showed up.) A physical therapist from hospice came once a week -- even after we all knew my mom was well beyond physical therapy -- and she just sat for about an hour talking to my mom, husband and aide and drinking tea and eating cookies. When my mom died, NOT ONE hospice member came to the funeral home and no one from hospice has checked up on me since she died (except for one letter telling me it's ok to grieve and another letter asking for a donation).
Having said all that, I would strongly suggest getting referrals for different hospice groups (they definitely are NOT all the same).
I am not a big hospice fan, I never had the "warm and fuzzy" support that you all are cheerleading about. My mother lived with me until she died and we had hospice for over 9 months. The nurse came several times a week to check her vitals and never even talked to me unless I specifically called her. (My husband worked nights so he was home with my mom during the day while I was at work and that's when hospice showed up.) A physical therapist from hospice came once a week -- even after we all knew my mom was well beyond physical therapy -- and she just sat for about an hour talking to my mom, husband and aide and drinking tea and eating cookies. When my mom died, NOT ONE hospice member came to the funeral home and no one from hospice has checked up on me since she died (except for one letter telling me it's ok to grieve and another letter asking for a donation).
Having said all that, I would strongly suggest getting referrals for different hospice groups (they definitely are NOT all the same).
Update on my hubby: Well, i thought he was going to come home yesterday, but the Dr's have discovered that he has a blockage in his liver. We do not know if that is a tumor or gallstone or why it is blocked. He is going to have a procedure done and hopefully it will clear the blockage so the liver can filter itself again. The Dr said he has a 50/50 chance of it working, so I am praying it will work.
On a different note, we have found a really good hospice organization and my next door neighbor works for them as well so that is going to work out just fine, but right now we are waiting to see what happens. The plan is to have hospice care at home when the time comes.
Thank you all for your support. I can't tell you how much it means to us. Sending you all hugs, Renee'
Update on my hubby: Well, i thought he was going to come home yesterday, but the Dr's have discovered that he has a blockage in his liver. We do not know if that is a tumor or gallstone or why it is blocked. He is going to have a procedure done and hopefully it will clear the blockage so the liver can filter itself again. The Dr said he has a 50/50 chance of it working, so I am praying it will work.
On a different note, we have found a really good hospice organization and my next door neighbor works for them as well so that is going to work out just fine, but right now we are waiting to see what happens. The plan is to have hospice care at home when the time comes.
Thank you all for your support. I can't tell you how much it means to us. Sending you all hugs, Renee'
i hope your hsuband can get home with you soon. just so you know, even if he should have to stay in hopsital or a nursing home, you can still call in hospice and i'd recommend that. the kinds of services and care they provide are usually (sadly and outrageously) neglected in care institutions. so whatever happens, they can still help. a lot of people don't realize this but your neighbor can tell you all about it. you can get this started so they're ready to work with you at any time. don't worry about jaczyns1' report. the "nurse" she mentions was an aide, not an RN, and her husband was the day contact and who knows about all that. but each area usually has at least 2 services (in our tiny part of arizona -- 3!), so there are choices. i guess the more a family talks with them, the more the family get in understanding, communication and services.
i hope your hsuband can get home with you soon. just so you know, even if he should have to stay in hopsital or a nursing home, you can still call in hospice and i'd recommend that. the kinds of services and care they provide are usually (sadly and outrageously) neglected in care institutions. so whatever happens, they can still help. a lot of people don't realize this but your neighbor can tell you all about it. you can get this started so they're ready to work with you at any time. don't worry about jaczyns1' report. the "nurse" she mentions was an aide, not an RN, and her husband was the day contact and who knows about all that. but each area usually has at least 2 services (in our tiny part of arizona -- 3!), so there are choices. i guess the more a family talks with them, the more the family get in understanding, communication and services.
Thank you everyone. Another update on my hubby, the procedure went well and they were able to put a stint in the liver to help drain the bile. We are grateful for so many small miracles. I do hope that one day soon, cancer will no longer exist. Take care. Sending you all hugs, Renee'
Thank you everyone. Another update on my hubby, the procedure went well and they were able to put a stint in the liver to help drain the bile. We are grateful for so many small miracles. I do hope that one day soon, cancer will no longer exist. Take care. Sending you all hugs, Renee'
yeayyyyyyyy, Renee! way to go, girl!
yeayyyyyyyy, Renee! way to go, girl!
Even better news...My hubby is home today :) Yeah!!! all went well, Thank you God, and now we are taking one day at a time. We are going to look into hospice next week. My hubby has one more procedure to go and then we can keep him home. Thank you everyone. Sending you all hugs
Even better news...My hubby is home today :) Yeah!!! all went well, Thank you God, and now we are taking one day at a time. We are going to look into hospice next week. My hubby has one more procedure to go and then we can keep him home. Thank you everyone. Sending you all hugs
frena, please don't put words in my mouth -- I WAS referring to a hospice RN NURSE and hospice THERAPIST and my husband was on top of everything. My point about hospice was that the RN NURSE and THERAPIST did their job but did not provide the comfort and support to my mother or me that most people want/need. I am just trying to help skylar to be on top of everything and encourage her to do her own research so that she can make her own best choices because organizations (people) are not always what they seem. Skylar, I am glad to hear that your husband is home with you and that you were able to find a really good hospice organization! I am hoping that you will now be able to enjoy every minute you have with your husband and get the much needed help/support you both deserve!
frena, please don't put words in my mouth -- I WAS referring to a hospice RN NURSE and hospice THERAPIST and my husband was on top of everything. My point about hospice was that the RN NURSE and THERAPIST did their job but did not provide the comfort and support to my mother or me that most people want/need. I am just trying to help skylar to be on top of everything and encourage her to do her own research so that she can make her own best choices because organizations (people) are not always what they seem. Skylar, I am glad to hear that your husband is home with you and that you were able to find a really good hospice organization! I am hoping that you will now be able to enjoy every minute you have with your husband and get the much needed help/support you both deserve!
Skylar- I'm happy hubby is home. there's no place like home! Whatever may come, I wish the both of you comfort and peace of mind. Keep us updated when you are able.
Skylar- I'm happy hubby is home. there's no place like home! Whatever may come, I wish the both of you comfort and peace of mind. Keep us updated when you are able.