Dear Barbara, My grandmother had lupus for 20+ yrs. Her platelets and red blood cells got very low and ten blood transfusions and plasmapheresis did nothing. They said she had a blood infection and her body was basically killing the red blood cells. In a few weeks she could no longer walk on her own or use her hands. Her final day they gave her morphine and took off her oxygen mask. Before the morphine she was alert and talking to us but after she was completely checked out and then unresponsive. Would she have stayed alert without the morphine? Would she still be alive? I was the only one in the room with her when she took her last breath and my heart breaks over whether we made the right decision. She passed yesterday morning.
From your description of your grandmother’s illness her body had entered the dying process. It was shutting down, unable to combat the disease that she had lived with for so many years.
It sounds like she was given morphine to ease her transition from this world to the next. Not knowing your grandmother's medical history I cannot say if the morphine was appropriate or not. What I can say is it did not kill her. She was dying whether she had morphine or not and she was dying then, not later.
I know that may sound harsh but at the point she was given the morphine her circulation was not able to work in the normal way, plus it was her blood that was not healthy which makes circulation and distribution of the medicine less timely and effective.
For your question, "Would she have still been alert if she hadn’t been given the morphine before she died?" Dying is not like it is in the movies where we say something important and then take our last breath. In real life in the hours to even days before death a person is generally non responsive (non responsive to their environment). They may be talking, even moving about, but not making sense and movements are aimless. They are not alert as we think of alert.
That is how people die and from what you have told me your grandmother died well. Nothing bad or pathological was happening. She died the way people die and she did it well. It is very sad when someone we love dies but from what you have described her death was not bad. It was relatively quick without a great deal of suffering.
Having someone we love die is devastating, a loss we have to learn to live with. Let go of how she died, it was not pathological, and savor the time you had with her. We have limited control over the time that we die. Your grandmother died with only you there. That was her gift to you. She choose to have you there to support her as she left. She could have died when you left the room. What trust she had in you.
You might write her a letter. Put all of your thoughts and feelings about her and your relationship on paper—the good and the challenging— and then let go, burn the letter, and throw the ashes to the wind.
Something more about... Would She Still Be Alive?
It is the job of the hospice staff to educate families on the normal, natural way that people die. Families need to know what to expect when their loved one is given a narcotic. Offering end of life resources to families will help reduce their fear and give the hospice good CAHPS scores. I suggest GONE FROM MY SIGHT and PAIN AT END OF LIFE.
11 comments
barbara
Hi Jan, I really don’t have enough medical information about your husband to know why he died so suddenly. You are right he did not follow the pattern of someone dying from a gradual disease. He died more of a fast, sudden death. This is something you will never know. I can say if you think about it he did a good job. He skipped over the hard part, the labor of dying, and just went on. That is certainly harder for you because you didn’t have a proper goodbye BUT for him it really was a gentler way to die. You might write him a letter and say what you would have said to him if you had had the opportunity then burn the letter and scatter the ashes to the wind. My blessings are with you. Barbara
Hi Jan, I really don’t have enough medical information about your husband to know why he died so suddenly. You are right he did not follow the pattern of someone dying from a gradual disease. He died more of a fast, sudden death. This is something you will never know. I can say if you think about it he did a good job. He skipped over the hard part, the labor of dying, and just went on. That is certainly harder for you because you didn’t have a proper goodbye BUT for him it really was a gentler way to die. You might write him a letter and say what you would have said to him if you had had the opportunity then burn the letter and scatter the ashes to the wind. My blessings are with you. Barbara
Jan Freeman
I read your comments above regarding the months and weeks before death. I wanted to share my experience with my husband and see if you think this is “normal”. He was diagnosed with cancer around the exterior of the stomach. They did a biopsy but could not determine where the cancer originated. We were told by the Oncologist that he had about six months with no treatment and up to three years if he did treatment. Of course, we opted for treatment. He had 18 radiation treatments because of a spot found on his spine. He had one chemo treatment. The second treatment was scheduled but he would not go. He told me that he was not doing any more treatments because it wouldn’t make a difference. I took him to the ER that Saturday because he was in so much pain and couldn’t keep anything down. We were told that he would go home Monday under Hospice care. He was actually glad for that. Monday morning, the lab tech came in as usual. When he left, my husband got out of the chair and moved to the bed. I was concerned because he was so weak. He said he just wanted to lie down. Then he says he loves me. I told him I love him too. I sat down on the window seat and was looking at my phone. The next thing I know, the nurse touched my shoulder and told me he was gone. I was in shock. I had dozed off but it was less than an hour later. How does that happen? He is up moving around and talking, then gone. He died ten weeks and one day after the diagnosis. How could his Oncologist not know how soon he would die? I have struggled with these questions for three years.
I read your comments above regarding the months and weeks before death. I wanted to share my experience with my husband and see if you think this is “normal”. He was diagnosed with cancer around the exterior of the stomach. They did a biopsy but could not determine where the cancer originated. We were told by the Oncologist that he had about six months with no treatment and up to three years if he did treatment. Of course, we opted for treatment. He had 18 radiation treatments because of a spot found on his spine. He had one chemo treatment. The second treatment was scheduled but he would not go. He told me that he was not doing any more treatments because it wouldn’t make a difference. I took him to the ER that Saturday because he was in so much pain and couldn’t keep anything down. We were told that he would go home Monday under Hospice care. He was actually glad for that. Monday morning, the lab tech came in as usual. When he left, my husband got out of the chair and moved to the bed. I was concerned because he was so weak. He said he just wanted to lie down. Then he says he loves me. I told him I love him too. I sat down on the window seat and was looking at my phone. The next thing I know, the nurse touched my shoulder and told me he was gone. I was in shock. I had dozed off but it was less than an hour later. How does that happen? He is up moving around and talking, then gone. He died ten weeks and one day after the diagnosis. How could his Oncologist not know how soon he would die? I have struggled with these questions for three years.
Barbara
Hi V, in response to your blog comment I have to agree with the first doctor you saw who said there was really no need for a biopsy or treatment. All to often doctor’s advise tests, chemo, and/or radiation not taking into consideration the age, mobility, or quality of life they are advocating to extend. What is the purpose of extending breathing if it is filled with illness, pain, and confusion. Your mother was 89. Her body and her mind were wearing out. By not actively treating a disease, that at 89 was not going to improve her quality of life, you gave your mother a gift. You gave her 10 months of a gift of calm, of her normal routine, of not having her body dealing with invasive, discomfort producing medications or procedures. Treating her originally would probably not have given her more time but would have disrupted the quality of the time she did have. Unfortunately our medical model treats diseases that people have instead of people that have diseases. Your first physician is a rare find. She treated the person first when recognizing the body was not fixable. There is no guilt here for you to carry but you might write your mom a letter and put your feelings of guilt and confusion about how she approached death in a letter. Put all the feelings and tears down on paper, then burn the letter, scatter the ashes to the wind. Know she will receive your thoughts. My blessings are with you. Barbara
Hi V, in response to your blog comment I have to agree with the first doctor you saw who said there was really no need for a biopsy or treatment. All to often doctor’s advise tests, chemo, and/or radiation not taking into consideration the age, mobility, or quality of life they are advocating to extend. What is the purpose of extending breathing if it is filled with illness, pain, and confusion. Your mother was 89. Her body and her mind were wearing out. By not actively treating a disease, that at 89 was not going to improve her quality of life, you gave your mother a gift. You gave her 10 months of a gift of calm, of her normal routine, of not having her body dealing with invasive, discomfort producing medications or procedures. Treating her originally would probably not have given her more time but would have disrupted the quality of the time she did have. Unfortunately our medical model treats diseases that people have instead of people that have diseases. Your first physician is a rare find. She treated the person first when recognizing the body was not fixable. There is no guilt here for you to carry but you might write your mom a letter and put your feelings of guilt and confusion about how she approached death in a letter. Put all the feelings and tears down on paper, then burn the letter, scatter the ashes to the wind. Know she will receive your thoughts. My blessings are with you. Barbara
V. Roe
My mom 89 died a month ago and I feel guilty. She had uterine cancer symptoms but was not a candidate for surgery chemo or radiation due to heart and kidney disease . The doctor said she would not do the biopsy since she was not a candidate for treatment. She said she wouldn’t put her mom through it as it is painful and no point. I listened to her. As mom’s spotting got worse I finally asked for biopsy and it came back cancer but 10 moths had passed. We saw an oncologist who said she was treatable with estrogen blockers since the cancer was estrogen receptive. She was on the blocker 2 months when a large mass was spotted in her lung. She passed away 3 weeks later. I know the estrogen blocker would not save her life but could have slowed the cancer down and gave her more time. Her dementia was progressing too so everyone tells me getting her more time was just giving her more time to suffer. I can’t help but feel guilty because I listened to that doctor. Yes her dementia was getting worse and she was miserable and unhappy but I can’t help but feel guilty.
My mom 89 died a month ago and I feel guilty. She had uterine cancer symptoms but was not a candidate for surgery chemo or radiation due to heart and kidney disease . The doctor said she would not do the biopsy since she was not a candidate for treatment. She said she wouldn’t put her mom through it as it is painful and no point. I listened to her. As mom’s spotting got worse I finally asked for biopsy and it came back cancer but 10 moths had passed. We saw an oncologist who said she was treatable with estrogen blockers since the cancer was estrogen receptive. She was on the blocker 2 months when a large mass was spotted in her lung. She passed away 3 weeks later. I know the estrogen blocker would not save her life but could have slowed the cancer down and gave her more time. Her dementia was progressing too so everyone tells me getting her more time was just giving her more time to suffer. I can’t help but feel guilty because I listened to that doctor. Yes her dementia was getting worse and she was miserable and unhappy but I can’t help but feel guilty.
Debbie Johnson
This booklet “Gone From My Sight” was so helpful to me at the last days of my mom’s illness and passing.Anytime I have doubt on if we did it right or wrong I reread “Gone From My Sight”, and I know everything was right.Thank you Barbara.
This booklet “Gone From My Sight” was so helpful to me at the last days of my mom’s illness and passing.Anytime I have doubt on if we did it right or wrong I reread “Gone From My Sight”, and I know everything was right.Thank you Barbara.
Barbara
Hi Christine, in regards to caring for your mother and father-in-law. What a wonderful gift you gave them and not an easy gift to give. When you are feeling inadequate remember we always do the best we can. No one sets out to do a poor job. Caring for someone at the end of their life is hard work, times two in a short period makes you a saint. If you have unfinished business in your mind with either of them write individual letters to them. Write about whatever is on your mind, the positive and the negative. Burn the letter and scatter the ashes to the wind. Know they will receive your thoughts and feeling and you can move on to live your best life. Blessings to you. Barbara
Hi Christine, in regards to caring for your mother and father-in-law. What a wonderful gift you gave them and not an easy gift to give. When you are feeling inadequate remember we always do the best we can. No one sets out to do a poor job. Caring for someone at the end of their life is hard work, times two in a short period makes you a saint. If you have unfinished business in your mind with either of them write individual letters to them. Write about whatever is on your mind, the positive and the negative. Burn the letter and scatter the ashes to the wind. Know they will receive your thoughts and feeling and you can move on to live your best life. Blessings to you. Barbara
Barbara
Hi Collin, your comment about the “gift” of being present or not present at the moment of death is right on. Having limited control over the time that we die means we can protect those we love by not dying when they are in the room or honor them with the gift of being there when the last breath is taken. Either way I consider a gift is being given.
Blessings! Barbara
Hi Collin, your comment about the “gift” of being present or not present at the moment of death is right on. Having limited control over the time that we die means we can protect those we love by not dying when they are in the room or honor them with the gift of being there when the last breath is taken. Either way I consider a gift is being given.
Blessings! Barbara
Nancy Mattson
Thank you for your care, concern in showing us caregivers how to educate the family members in this time of life to make it a wonderful experience that it should be!
Happy Holidays
Thank you for your care, concern in showing us caregivers how to educate the family members in this time of life to make it a wonderful experience that it should be!
Happy Holidays
Christine
I wish I saw this earlier. Jan 27 will be 5 years since Mom passed. My Husband and I cared for her and my Father In Law , at the same time, in our home. Dad passed 1 day short of 2 months from my Mom.
I stayed chairside with mom for 3 months prior to her passing. Thankfully that chair was cozy. I wouldn’t trade 1 minute.
I was in charge of the meds. I always blamed myself for having to give them to her. At one point she asked ,”are you trying to kill me?” Because I had to administer the meds. She would ask me to heal her.
The one and only time I left her side to nap on a futon 5 feet away was when she passed. I carry guilt for not being by her side.
Right after, I took over caring for my father in law. Meds , etc.
I swear I have ptsd from this
No one prepares you for YOUR feelings of inadequacy.
I wish I saw this earlier. Jan 27 will be 5 years since Mom passed. My Husband and I cared for her and my Father In Law , at the same time, in our home. Dad passed 1 day short of 2 months from my Mom.
I stayed chairside with mom for 3 months prior to her passing. Thankfully that chair was cozy. I wouldn’t trade 1 minute.
I was in charge of the meds. I always blamed myself for having to give them to her. At one point she asked ,”are you trying to kill me?” Because I had to administer the meds. She would ask me to heal her.
The one and only time I left her side to nap on a futon 5 feet away was when she passed. I carry guilt for not being by her side.
Right after, I took over caring for my father in law. Meds , etc.
I swear I have ptsd from this
No one prepares you for YOUR feelings of inadequacy.
Collin Hays
Barbara, I really have enjoyed a couple of your books but this statement bothers me:
“Your grandmother died with only you there. That was her gift to you. She choose to have you there to support her as she left. She could have died when you left the room. What trust she had in you.”
This implies that if your loved one waited for you to depart before they died, which was the case with my dad, that he didn’t trust me enough to be there.
Whether he was an active participant in the moment of his passing I don’t know, but if he was, he may have felt me not being there and witnessing his last breath was a gift as well.
I think we have to be careful when assuming the intent of the loved one as to who is present (or not) when they die.
Barbara, I really have enjoyed a couple of your books but this statement bothers me:
“Your grandmother died with only you there. That was her gift to you. She choose to have you there to support her as she left. She could have died when you left the room. What trust she had in you.”
This implies that if your loved one waited for you to depart before they died, which was the case with my dad, that he didn’t trust me enough to be there.
Whether he was an active participant in the moment of his passing I don’t know, but if he was, he may have felt me not being there and witnessing his last breath was a gift as well.
I think we have to be careful when assuming the intent of the loved one as to who is present (or not) when they die.
Judy Fauth
I still ache from the death of my husband of 38 years. He passed on March 16, 2018. I was not there when he took his last breath and I know you’d tell me he wanted to spare me. Thank you for providing so much information and comfort to survivor’s. I chose the wrong hospice since they provided no before, during or after information. So, thank you.
I still ache from the death of my husband of 38 years. He passed on March 16, 2018. I was not there when he took his last breath and I know you’d tell me he wanted to spare me. Thank you for providing so much information and comfort to survivor’s. I chose the wrong hospice since they provided no before, during or after information. So, thank you.