My Mother recently passed away just a day after this post, she was a recent 72 years of age. She was diabetic and had a degenerative neurological dementia (not officially diagnosed but was assessed by the hospitals and hospice team that cared for her) along with an ongoing UTI which was causing more confusion. She was on a specific regimen of medication for her diabetes and blood pressure, thyroid, and kidneys. I had seen her just days before arriving at accent care hospice at a long term SNF. When I saw her, she recognized me, was speaking, and was eating food. There was a bit of confusion because the SNF team was trying to get her long term care, but there was an order for hospice from somewhere (not spoken to myself or family members), until finally through a phone call the assistant nurse to the doctor said that the doctor at the SNF was ALSO suggesting hospice because my mother wasn’t improving her condition (but she specified she was not on the brink of death either). We had an interview with the hospice coordinator (or sales rep) and she mentioned my mother would stay on her medications and regimen and after they cured her UTI she could return home with hospice service if needed. The day after she arrived at hospice we were in a shocked state to see our mother drugged up and her mouth wide open with no ability to speak to us. We were told she was loud when she arrived and they gave her comfort medication for her pain. Which no one at all mentioned they were giving her morphine until I read a pamphlet on a table that said that hospice patients are provided a comfort pack My mother began to have difficulties swallowing, and we spoke to the doctor a day after, where he said he would monitor her state for the coming week to see if she may begin the period of transitioning. The swallowing did not allow her to take her medications that she’s been on for over a decade. I asked if they would IV her and they didn’t really say they would, but said she was being given insulin. She began to make some noise the last evening I saw her and the medical assistant saw us and said it’s time for her pain medication. He brought morphine, and I mentioned the doctor told us he would suggest not giving her morphine unless necessary. In this case because she was exhibiting some vocalizing of pain, it prompted him to administer a dose. She died the following morning after the above. I was in shock, as the doctor did not say her death was imminent. I have some strong regret in putting her in hospice. As I mentioned she was 72 and her condition was yo-yoing. Her mental state was especially bad when she had a uti, but I feel like I let her down because I was in charge of taking her to these places, I’ve been over worked working a new job and my old job and managing my life while having her situation on the side, I was seeing her at least a couple times a week prior to her long term care admission which was a month before entering hospice and saw her the last couple days of her life at hospice before the morning. My thing is why didn’t they tell me her death was imminent? When I asked cause of death I got a generalized umbrella degenerative dementia and you never know when your time comes. That isn’t god enough for me. Am I asking for too much for wanting to know what exactly happened those last dozen hours after the doctor set a week expectation for observation? I haven’t received any call other than the call saying we are sorry to inform you she has passed. No one has contacted me that was helping her? Not even the doctor that spoke to us for a half hour to explain what was happening. Is that normal? If the grammar is out of whack I apologize as I wrote this on my iPhone, but I would appreciate your opinions.
My dad had been declining for two years, but the end was especially rapid. On July 4, he came downstairs by himself for family dinner. On the 25th, he was found delirious after which the palliative care referred him to hospice.
He died 11 days later.
If it’s helpful, I have regrets and should-haves/could-haves too about my father’s last days on hospice. In our case, I wonder if we could have started giving the comfort meds earlier than we did, so we could know how he responded to them and establish a dose…. Maybe that would have been better… And so on. But you know, I think we have to accept that we did our best and I’m sure you did too.
Best to you. 😊
Continue to reach out to them if you feel like you need more information about your mom’s condition during her time in hospice. They will also have a social worker on staff and clergy if you would like to speak with them.
Please know that none of this is your fault. You certainly didn’t let her down and be comforted that they were managing her pain during her final hours.
72 is young. I just lost a brother who was the same age as your mom. I’m saddened that he didn’t live longer but I know that he struggled with his heart for many years and I am glad that he is out of his misery.
He died in the ambulance on the way to the hospital. I keep having thoughts of wondering if he was afraid or if he remained in pain.
He was experiencing pain and decided that he needed to go to the hospital. His wife was at work and then she received a phone call saying that he didn’t make it. I feel awful for my sister in law, his children and grandchildren.
There is always disbelief when someone we love dies. Even when we know that they have been experiencing health issues. We are in shock and aren’t always ready to let go. We feel sad because we haven’t had the chance to say goodbye to them.
My brother knew that I loved him dearly and I am quite certain that your mother knew how much you loved her.
I wish I had words to comfort you. No one can say anything that will make your pain go away. You’re grieving the loss of your mom.
If you would like to share your thoughts with others about your loss, look up griefshare.org, it may help you to process your emotions. They have meetings and you will be with others who share a loss.
Wishing you peace as you mourn the loss of your dear mother.
Please do not blame yourself .
Only the doctor would be able to give you more details .
However , I am guessing that her UTI lead to sepsis , which can happen quickly and cause death . She had very serious issues , diabetes , kidney disease which make it much harder to recover or survive sepsis. Sepsis is common in the elderly . Take comfort in that they were giving her morphine to keep her comfortable .
Doctors tend to put an existing diagnosis as a cause of death .
Doctors can guess how much time someone has left , but it is only a guess . Sometimes an elderly person who is already ill , and not getting better, gets sepsis , or a heart attack or stroke and die more quickly than expected . Conversely we have had 3 times in this past year we were told my father in law was going to die and he hasn’t yet . He has somehow pulled through .
Again , so sorry for your loss and that things were not explained to you better .
A stroke? An aneurysm? No way of knowing. She was not afraid of dying. She died in peace and pain-free. And all that brings me comfort.
you didn’t do anything wrong. PLEASE DO NOT GO DOWN THAT GUILT PATH.
Just know these lives were not given an instruction booklet… can you imagine? Mine would’ve been destroyed years ago.
The comfort package…
mom had one too, but a hospice nurse who answered my call literally showed me how to crush the morphine pill and slide it in her mouth, every hour I was told….
she never mentioned the Ativan which separates the brain from body… I have guilt… it’s been a few years now….
Please note…. You are okay… mom is not suffering anymore. She is okay. She’s looking down at you, smiling…
Talk ti her.. she will answer…
We cannot predict what’s going to happen…
Just know she is whole again.. she’s not suffering.. not in discomfort…
Do not feel guilt.
Look up and tell her you love her…
hugs….
If you are a believer, try to trust in God. Her time would have come if there was no medication available. Don’t prolong your pain by blaming yourself or other people.
But--
Doctors aren't God. They look at the big picture and make their decisions based on what they see, and what they know.
My SIL is a dr. He had a patient who was awaiting a liver transplant. She was totally non-compliant and it drove him crazy. She was sheduled for a colonscopy one morning and refused to do the prep. He was so upset with her he went BACK to the hospital at about midnight to talk to her in person. She just didn't 'feel' like doing the prep. No reason, just didn't feel like it.
After an hour of talking to her, he gave up and came home.
She died 9 hrs later. He didn't see death was imminent. She was very sick, but this caught him off guard.
He learned a mighty lesson: patients will do what they want, AND, you can't predict someone's death, really. He's seen people hang on for years past when they were placed in Hospice. My own MIL is in month 10 of Hospice--when her death was deemed 'imminent' way back in January. We have no idea what's keeping her alive.
ANYONE who is in active Hospice is either slowly or quickly 'transitioning'. You want to be mad at the 'system', but they didn't do anything but what they're supposed to do.
Drs are not able to look into a person's body and tell you truthfully what is going on. I'm sure the dr is as baffled as you are--but with Hospice, they don't really do a deep dig on the 'whys' of someone's death.
It IS a shock to the family, and I am sorry for you for that.
But the pain is over, the unhappy life is done--in time you will come to terms with that.
BTW--Nurses are far better able to tell if a person is in pain--sounds like your aunt was non-verbal-so they'd have to go on her behavior, which is hard.
I hope you find peace with this, soon.
Your mother was on Hospice care.
Hospice is end of life care.
In hospice care a patient is NOT allowed to suffer. When there is pain expressed (as your mother DID express it) that pain will be relieved with medication even IF that medication may speed death up by some seconds, minutes, hours, or even days.
From what you have written here you seem fully informed of what medications were given, why they were given, what your mother's underlying conditions were, that your mother was dying. You yourself say the doctor spoke with you for 1/2 hour. You understand all of the major system that were killing your mother.
Loss is always hard. Sometimes trying to "find something or someone to blame" is a way to prevent our moving into and through the grieving process. For myself, as a nurse, who started nursing before we had hospice, I am so thankful your Mom has hospice.
PS: Fluids are not normally given during hospice care. They are A) difficult for a body to handle during this process, often go into the lungs, making breathing more difficult, because the kidneys and heart cannot eliminate them as normally would be done. And B) cause more difficulty with breathing C) prolong the difficult and painful dying process.
I am so sorry for your grief and for your loss. I hope you will be able to move to a place where you are comforted by the knowledge your mother no longer has to suffer without relief and you no longer have to stand witness to the awful suffering she was going through.
Many years ago when my mother was alive, I was trying to come to terms with how I would feel when preparing for her death.
I attended an ‘end of life’ seminar. I found it extremely interesting and helpful.
One thing that was mentioned was that not all hospice providers operate in the same way. We were advised to research thoroughly before selecting an appropriate organization.
Family members were told not to object to the use of morphine with the mindset that it would hasten their death. Instead, to view it as the most humane way to treat a dying person.
Terminology of ‘death’ was spoken about. The speaker (who had a mental health background) said that in general he saw when people used the word, ‘died’ instead of ‘passed’ they were able to process death more thoroughly.
He said that we ‘pass’ a kidney stone but people die. It’s permanent.
I have no idea how the expressions ‘passing away, passed or transitioning’ came about exactly. Maybe people are trying to be more gentle. Who knows?
Nevertheless, they are dead. There is no way to sugarcoat it as far as I am concerned.
I have never corrected anyone who says these common expressions. I don’t say to them that I don’t like the expressions. I cringe a bit privately inside but I’m polite and I respect their choice of words to express themselves.
It’s just that I don’t use these expressions and have never been comfortable saying ‘passed’ long before I went to the ‘end of life’ seminar. I have always said die, dying, died, dead or death.
Oh, another thing that the speaker said was, “Nurses are our best friends when we need care.” I love that. He joked about doctors sometimes being smug but nurses are wonderful and do their jobs very well!
My condolences on your loss.
That's exactly what happened, and I'll tell you, that feeling of not caring was the best thing that ever happened. It removed the fear, I was able to relax, and that helped immensely.
Your mom was suffering. She was given morphine which took away her fear. Be grateful for that.
Please take advantage of the grief counseling hospice offers, and consider getting the book Healing After Loss, by Martha Hickman. You only read one page a day, and it'll help you get through the first year.
Doctors cannot predict the death of a patient, so it isn't fair to expect them to do so. The best they can do is give an estimate. She was likely septic, as mentioned above, and that goes fast. Don't hang your grief on a doctor who didn't give you a correct the moment she was going to pass.
I'm really sorry for your loss. It's always painful no matter how someone's end comes.