There are just two ways to die, fast and gradual. Gradual death has a process to it. If it were happenstance and just happened it would be a fast death. Gradual death occurs either because of old age or disease. With diseases the process begins months before actual death and in old age the process takes years.
Most people have never considered what has been written in the above paragraph. Yet everyone will be faced with the experience of death, someone they care about or their own. Through out most of American society the idea of dying is held in the back recesses of the mind. Only when life forces it upon us do most consider addressing the issues dying and death presents.
Funeral industry, hospice and the newest member Palliative Care are the few service providers that dare approach the subject of mortality. Funeral out of necessity, hospice and palliative care out of the perceived need for more support and information.
Many agencies, home health, churches as well as physicians are reluctant to recommend hospice services. It is sad and confusing why anyone would not give their friends, clients or customers the guidance and comfort that trained hospice professionals can offer. Maybe this reluctance to refer has to do with seeing death as a failure, maybe it is just ignorance as to the true value of hospice. It is perfectly acceptable to ask a physician for a hospice referral.
If the signs are there, get the referral and let a hospice professional determine if Hospice is appropriate. Three things I look for to tell me if it is time for Hospice are: 1. the patient’s condition is deteriorating in spite of the treatment that is being given. 2. You look at the person and say to yourself (and we have all done this but often not wanted to admit it) this person is not going to be here next year at this time. 3. the family and significant others are having difficulty coping with the seriousness of their loved one’s condition.
We generally give people more time then they have. I know it is scary to think of using hospice just as it is scary to make funeral arrangements. It says death will happen soon, but there is such guidance and support to help that at least ask for an information visit.
A hospice referral is a win win. You win if they say it is too soon and you are not appropriate for hospice care or you win by coming onto the hospice program and getting much needed guidance, information and support.
Sometimes patients rally once they are with hospice care. I think it is because hospice is the expert in pain management and comfort care and brings that to the patient and family. Everybody begins to relax a little. You feel less alone, less isolated and have more knowledge about what happens as death approaches.
I know people think of Hospice as caring for those people that are dying but remember we are all dying. Hospice guides and supports people who are in the final act of living.
Something More about WHY NOT HOSPICE, A Reluctance To Refer...
"Dad was showing these signs months ago" is a common response hospices hear from families after reading GONE FROM MY SIGHT. The information provided in the book regarding signs of approaching death is what physicians need to offer families much sooner than they normally do.
15 comments
Barbara
Hi Sandra, What a mess but not unique. A family in crisis, and a father dying is a crisis, often brings out the worst in us rather than pulling us together as a family. It sounds like you are in a no win situation as far as getting your father and your ideas listened to. Your father, with his age and dementia, will probably register the ideas of whoever speaks to him last (and that sounds like it is your sister). I think this is a “fight” you are not going to win. You may have to tell your sister you want to spend time with your dad but you promise not to address his care issues. You just want to be with him and love him. When you are with him, be calm, soothing, and gentle, that is what you want to convey to him. With dementia it isn’t about being rational, reasonable or logical. It is about being with them in a reassuring loving manner.
I am sorry your last months or weeks with your father are surrounded with family anger.
Blessings! Barbara
Hi Sandra, What a mess but not unique. A family in crisis, and a father dying is a crisis, often brings out the worst in us rather than pulling us together as a family. It sounds like you are in a no win situation as far as getting your father and your ideas listened to. Your father, with his age and dementia, will probably register the ideas of whoever speaks to him last (and that sounds like it is your sister). I think this is a “fight” you are not going to win. You may have to tell your sister you want to spend time with your dad but you promise not to address his care issues. You just want to be with him and love him. When you are with him, be calm, soothing, and gentle, that is what you want to convey to him. With dementia it isn’t about being rational, reasonable or logical. It is about being with them in a reassuring loving manner.
I am sorry your last months or weeks with your father are surrounded with family anger.
Blessings! Barbara
Sandra Schneider
I am at a loss right now. My almost 94 year old father has 4 types of cancer and dementia. We were told by 4 doctors that it is time for hospice. His living will which was made 26 years ago, was clear that he wanted no interventions to artificially prolong his life. I am honoring this. The problem are other family members, including my sister who is herself an alcoholic and addict with schizoaffective disorder, and his sister who doesn’t want to let him go, telling him that he can continue to live with constant IV antibiotics, blood transfusions and round-the-clock care. He cannot bear any weight, is bladder and bowel incontinent and is often unaware of who is in the room, who has visited and how many grandkids he has and asks for his mother and grandmother. These family members have made a continuous and relentless effort to convince him that we are killing him by putting him in hospice. He arrived there today screaming that he doesn’t want to be there and asking why he doesn’t get a choice in his life. My sister and aunt have deprived us of the ability to be there with him and him of the ability to accept that death is a part of life. It is a difficult situation, not because he is dying, but because they have fed into his fears instead of facilitating this transition for him. Do you have any advice for us? The fact that my father will die hating me is very hard to accept, but I feel that if I allow them to take over his care it will cause him more suffering in the end.
I am at a loss right now. My almost 94 year old father has 4 types of cancer and dementia. We were told by 4 doctors that it is time for hospice. His living will which was made 26 years ago, was clear that he wanted no interventions to artificially prolong his life. I am honoring this. The problem are other family members, including my sister who is herself an alcoholic and addict with schizoaffective disorder, and his sister who doesn’t want to let him go, telling him that he can continue to live with constant IV antibiotics, blood transfusions and round-the-clock care. He cannot bear any weight, is bladder and bowel incontinent and is often unaware of who is in the room, who has visited and how many grandkids he has and asks for his mother and grandmother. These family members have made a continuous and relentless effort to convince him that we are killing him by putting him in hospice. He arrived there today screaming that he doesn’t want to be there and asking why he doesn’t get a choice in his life. My sister and aunt have deprived us of the ability to be there with him and him of the ability to accept that death is a part of life. It is a difficult situation, not because he is dying, but because they have fed into his fears instead of facilitating this transition for him. Do you have any advice for us? The fact that my father will die hating me is very hard to accept, but I feel that if I allow them to take over his care it will cause him more suffering in the end.
Barbara
Hi Rodna, I received your letter asking for direction for the feelings of guilt you are having about your husband’s dying hours, that you didn’t help him have a death with dignity and at home with his family. In the beginning part of your letter you explained your husband’s behavior, mean, abusive, threatening, and the reason you left him. Just because a person is dying does not mean their personality changes to a better one. Dying only intensifies the personality we’ve always had. From your description of your husbands behavior there would have been no he comes home and dies there happily surrounded by a loving family. If he were to come to your home, which I doubt he would have, he would have brought all the discord and anger with him. It takes two to mend a relationship and from what you have written he was not open to reconciliation.
Now, what can you do to live the life you have been blessed with. First, write your husband a letter. Put everything that has been bottled up inside of you into words, the anger, the guilt, the regrets. Write as much and as long as you need to to get it all out. No one will see this. It is between you and him. Then burn the letter and scatter the ashes along with all the feelings into the wind. Let it go and begin living the best life you can. The past is over, he is gone, you and your daughter have life to live. Make it a good one. Blessings! Barbara
Hi Rodna, I received your letter asking for direction for the feelings of guilt you are having about your husband’s dying hours, that you didn’t help him have a death with dignity and at home with his family. In the beginning part of your letter you explained your husband’s behavior, mean, abusive, threatening, and the reason you left him. Just because a person is dying does not mean their personality changes to a better one. Dying only intensifies the personality we’ve always had. From your description of your husbands behavior there would have been no he comes home and dies there happily surrounded by a loving family. If he were to come to your home, which I doubt he would have, he would have brought all the discord and anger with him. It takes two to mend a relationship and from what you have written he was not open to reconciliation.
Now, what can you do to live the life you have been blessed with. First, write your husband a letter. Put everything that has been bottled up inside of you into words, the anger, the guilt, the regrets. Write as much and as long as you need to to get it all out. No one will see this. It is between you and him. Then burn the letter and scatter the ashes along with all the feelings into the wind. Let it go and begin living the best life you can. The past is over, he is gone, you and your daughter have life to live. Make it a good one. Blessings! Barbara
Rodna
Barbara, plea offer me some soothing comments and ideas. I have found none. 5 years ago my spouse of 16 years died. He was diagnosed terminal and told no one. I guess he was waiting till his disease progressed further. He died unexpectedly from a complication of cirrhosis of the liver 11 months later. We all read the death certificate and we all found out then. I kicked him out of our home due to mood and behavior declines….he was becoming physically aggressive and our 14 yo daughter lived with us. He hated me. He sent me hateful texts all the time. His last one was 2 hours before he became nonresponsive. He was home when he sent it and was in ER when he became nonresponsive. His family chose not to tell me. I found out through the grapevine. I was there 3 days before life support was pulled. I said I was sorry to him, I don’t know if he heard. He went to his grave hating me. He did everything he could in his final months to ruin my life. I feel so guilty for not pressing him to tell me what doctor told him in the hospital. I should’ve been persistent. Please help encourage me. I’m only 50 yo. He was 53yo. I feel like I’m the only one who has had a death like this. I didn’t get to do what I should have done so he could have died with some dignity and spent his last weeks at home with his family. Help.
Barbara, plea offer me some soothing comments and ideas. I have found none. 5 years ago my spouse of 16 years died. He was diagnosed terminal and told no one. I guess he was waiting till his disease progressed further. He died unexpectedly from a complication of cirrhosis of the liver 11 months later. We all read the death certificate and we all found out then. I kicked him out of our home due to mood and behavior declines….he was becoming physically aggressive and our 14 yo daughter lived with us. He hated me. He sent me hateful texts all the time. His last one was 2 hours before he became nonresponsive. He was home when he sent it and was in ER when he became nonresponsive. His family chose not to tell me. I found out through the grapevine. I was there 3 days before life support was pulled. I said I was sorry to him, I don’t know if he heard. He went to his grave hating me. He did everything he could in his final months to ruin my life. I feel so guilty for not pressing him to tell me what doctor told him in the hospital. I should’ve been persistent. Please help encourage me. I’m only 50 yo. He was 53yo. I feel like I’m the only one who has had a death like this. I didn’t get to do what I should have done so he could have died with some dignity and spent his last weeks at home with his family. Help.
Shirley Carter
My dad was also on hospice from heart failure,seizures, strokes and dementia, I saw the signs of a slow death but didn’t face it until hospice said he’s slowly passing,hospice did all they could to help me get through this,till this day my pain from my dad’s passing in Feb.of this year is hard for me to cope on my daily activities. Seeing him in pain,not knowing why,but they told me what the pains were.I pray that everyone that has a love one on hospice love them while u can.My dad was on hospice one month and he passed away.
My dad was also on hospice from heart failure,seizures, strokes and dementia, I saw the signs of a slow death but didn’t face it until hospice said he’s slowly passing,hospice did all they could to help me get through this,till this day my pain from my dad’s passing in Feb.of this year is hard for me to cope on my daily activities. Seeing him in pain,not knowing why,but they told me what the pains were.I pray that everyone that has a love one on hospice love them while u can.My dad was on hospice one month and he passed away.
Joanne Naumer
My husband has Parkinson’s and afib. The bottom line for me was that I couldn’t care for him at home so if Hospice hadn’t accepted him he would be in a nursing home strapped in a wheel chair during the day and lonely and scared each night. I would be in the process of losing our home to pay for his care. Home hospice is very hard work but we can still have small joys together, share a cup of tea together and hold hands, etc. Without the support of our hospice team this part of his life would be horrible for both of us!
My husband has Parkinson’s and afib. The bottom line for me was that I couldn’t care for him at home so if Hospice hadn’t accepted him he would be in a nursing home strapped in a wheel chair during the day and lonely and scared each night. I would be in the process of losing our home to pay for his care. Home hospice is very hard work but we can still have small joys together, share a cup of tea together and hold hands, etc. Without the support of our hospice team this part of his life would be horrible for both of us!
Barbara
Ingrid and Kathy, I don’t think we can understand the term “withheld all medications” because we don’t know the particulars of Kathy’s mother’s illness. Yes, I agree with you Ingrid , hospice’s job is to evaluate a patient’s medications and eliminate those that are related to treatment and provide those that give comfort. What Kathy’s note tells me is her mother understood she was dying, that she died in peace and comfortable while her family participated and loved her through it.
Ingrid and Kathy, I don’t think we can understand the term “withheld all medications” because we don’t know the particulars of Kathy’s mother’s illness. Yes, I agree with you Ingrid , hospice’s job is to evaluate a patient’s medications and eliminate those that are related to treatment and provide those that give comfort. What Kathy’s note tells me is her mother understood she was dying, that she died in peace and comfortable while her family participated and loved her through it.
Ingrid Gordon
Hi Kathy,
During my 15 years in hospice we never just “withheld meds” We looked at the medications and stopped things that had limited benefit such as statins, vitamins etc but typically kept meds related to the diagnosis (is our cardiac its still got their digoxin, lisinopril etc) because they also helped symptoms We withheld/stopped meds when the person could no longer swallow. We also used comfort meds like opioids and anti-anxiety meds and bowel meds. Simply going in and withholding meds makes it look like you are trying to hasten death. Hospice does have general customs and guidelines but much is done on a case by case basis.
Hi Kathy,
During my 15 years in hospice we never just “withheld meds” We looked at the medications and stopped things that had limited benefit such as statins, vitamins etc but typically kept meds related to the diagnosis (is our cardiac its still got their digoxin, lisinopril etc) because they also helped symptoms We withheld/stopped meds when the person could no longer swallow. We also used comfort meds like opioids and anti-anxiety meds and bowel meds. Simply going in and withholding meds makes it look like you are trying to hasten death. Hospice does have general customs and guidelines but much is done on a case by case basis.
Kathy Wallace
My mother was diagnosed at the age of 85 with small cell lung cancer. She had lost dad a year earlier, me and my two sisters were with her when she got her diagnosis. The oncologist plainly stated that he could not make the quality of the rest of her life better, nor could he prolong it. She told us she wanted to go home. This woman my mother was active, she cooked, cleaned herself, yet she was ready to go. My oldest sister, and myself are RNs my little sister a teacher.
She went into hospice immediately they had a hospital bed delivered. All of her medications were withheld. For five days she was up and down by herself, we stayed with her in shifts. She ate what she wanted, but that sixth,seventh day started going down hill, understandably without her meds. She was ready, she wanted to see dad.
On the 12th day after her diagnosis she died peacefully painfree thanks to hospice and our diligence. We got to spend those days with mom, her grandkids got to spend precious time with her before she became unconscious. One of the things they did we all did was talking, singing, praying with her, because they hear things before they die. I would definitely say to recommend hospice for end of life. Great support for family. Everyone deserves this wonderful help in this difficult time.
My mother was diagnosed at the age of 85 with small cell lung cancer. She had lost dad a year earlier, me and my two sisters were with her when she got her diagnosis. The oncologist plainly stated that he could not make the quality of the rest of her life better, nor could he prolong it. She told us she wanted to go home. This woman my mother was active, she cooked, cleaned herself, yet she was ready to go. My oldest sister, and myself are RNs my little sister a teacher.
She went into hospice immediately they had a hospital bed delivered. All of her medications were withheld. For five days she was up and down by herself, we stayed with her in shifts. She ate what she wanted, but that sixth,seventh day started going down hill, understandably without her meds. She was ready, she wanted to see dad.
On the 12th day after her diagnosis she died peacefully painfree thanks to hospice and our diligence. We got to spend those days with mom, her grandkids got to spend precious time with her before she became unconscious. One of the things they did we all did was talking, singing, praying with her, because they hear things before they die. I would definitely say to recommend hospice for end of life. Great support for family. Everyone deserves this wonderful help in this difficult time.
Barbara
Hi Rachael, thank you the positive comments about my materials. To address your mention of physician lack of talking to their patients about end of life and making timely hospice referrals—I have been trying all the years of my career in end of life (37 years) to get physicians to accept that everybody dies. At some point the body dies and as that point arrives it is in the best interest of the patient to support their body with comfort measures rather than assault it with unhelpful procedures, medications, and treatment. Even these years later with Palliative Care physicians (that we didn’t have earlier) the general physician population does not recognize the benefits of hospice care. Until medical schools teach end of life communication skills, signs of approaching death, and comfort management as legitimate, required courses the old concept of death is the enemy to be fought at all times and what is learned from one, even when failed, helps another will prevail. Informed choice is the word that comes to my mine to describe what seems to be lacking in our medical environment.
Hi Rachael, thank you the positive comments about my materials. To address your mention of physician lack of talking to their patients about end of life and making timely hospice referrals—I have been trying all the years of my career in end of life (37 years) to get physicians to accept that everybody dies. At some point the body dies and as that point arrives it is in the best interest of the patient to support their body with comfort measures rather than assault it with unhelpful procedures, medications, and treatment. Even these years later with Palliative Care physicians (that we didn’t have earlier) the general physician population does not recognize the benefits of hospice care. Until medical schools teach end of life communication skills, signs of approaching death, and comfort management as legitimate, required courses the old concept of death is the enemy to be fought at all times and what is learned from one, even when failed, helps another will prevail. Informed choice is the word that comes to my mine to describe what seems to be lacking in our medical environment.
Rachael
Barbara has been a go to resource for me for the 6 years I have been providing care. I often encourage families to follow her on facebook or other social media sites.
As a hospice nurse, I sometimes find the families are much more accepting than the physicians, do you have a version with information for the physician explaining to him or her it is ok to refer sooner than the 11th hour.
All too many times, the family are too shocked and do not accept when death is "that close’ and we find no one receives the full benefit.
I have tried asking a few physicians why they refer so late and no one has been able to give a satisfactory reason. I often wonder if it goes against their oath of saving lives. Only a few doctors accept the hospice philosophy and I have learned to appreciate them and will dedicate myself to educating the rest.
Thank you Barbara, for providing the knowledge and wisdom to make our jobs that much easier
Barbara has been a go to resource for me for the 6 years I have been providing care. I often encourage families to follow her on facebook or other social media sites.
As a hospice nurse, I sometimes find the families are much more accepting than the physicians, do you have a version with information for the physician explaining to him or her it is ok to refer sooner than the 11th hour.
All too many times, the family are too shocked and do not accept when death is "that close’ and we find no one receives the full benefit.
I have tried asking a few physicians why they refer so late and no one has been able to give a satisfactory reason. I often wonder if it goes against their oath of saving lives. Only a few doctors accept the hospice philosophy and I have learned to appreciate them and will dedicate myself to educating the rest.
Thank you Barbara, for providing the knowledge and wisdom to make our jobs that much easier
Richard Balsomico
My father had dementia and was dying but we never realized it until we got hospice care and I got your book “Gone from My Sight” everything was right there what he was going through. I must have reread it a 100 times.
My father had dementia and was dying but we never realized it until we got hospice care and I got your book “Gone from My Sight” everything was right there what he was going through. I must have reread it a 100 times.
anne
I wish I had known about ‘Gone From My Sight’ months before we received the book- which was only 3 days before my father died. The book described his slow decent- it was as if you watched him and wrote it.
It helped me grasp that we had little time left and I will forever be thankful for that.
Hospice nurses are angels among us.
I wish I had known about ‘Gone From My Sight’ months before we received the book- which was only 3 days before my father died. The book described his slow decent- it was as if you watched him and wrote it.
It helped me grasp that we had little time left and I will forever be thankful for that.
Hospice nurses are angels among us.
Vickie Cram
I am thankful for hospice. I was able to spend my every last second with my husband as he passed. I was able to care for him as I had always planned for when the time came. The hospice..( everyone)… Were great. I can’t praise them enough. Now even 4 months later I hear from them. And the mortuary/ cremation. Great people. Careful, understanding. And got a another card from them last month. If one is able to care for their loved one at home with hospice help. They must take advantage.
I am thankful for hospice. I was able to spend my every last second with my husband as he passed. I was able to care for him as I had always planned for when the time came. The hospice..( everyone)… Were great. I can’t praise them enough. Now even 4 months later I hear from them. And the mortuary/ cremation. Great people. Careful, understanding. And got a another card from them last month. If one is able to care for their loved one at home with hospice help. They must take advantage.
Nancy Buckingham
I would recommend hospice, my husband was on hospice for 11 1/2 months. He went to his eternal home May 14th of this year. I am having a difficult time since my entire life was all about him. I miss him, I hurt and I know I cry a lot… however while he was here the hospice company I chose was awesome
I would recommend hospice, my husband was on hospice for 11 1/2 months. He went to his eternal home May 14th of this year. I am having a difficult time since my entire life was all about him. I miss him, I hurt and I know I cry a lot… however while he was here the hospice company I chose was awesome