My 96 year old mom was living with us until she had a stroke and entered a NH 5 yrs ago. She has left side paralysis and has been immobile for the last 5 yrs. Recently she experienced a bowel obstruction that is inoperable due to her age (even if she survived the surgery she would need a colostomy bag). She has been in the hospital for the last 2 weeks with fluids and a GI tube through the nose and into her stomach to keep her stable. They give her morphine as needed. Already the hospital attempted to discharge her. I appealed the decision and they have reversed it so she can stay. I gave up her NH room assuming she was near death. I presume she could go back as a rehab patient but is really very fragile and would probably die there because they would not provide care like the hospital can. The doctors constantly want me to remove the tube and all care so she can die under Hospice care but she is awake and alert every time we visit and has minimal conversations with us. I feel like it would be a death sentence and I would be the catalyst. I always thought she would die in her sleep and I still hope she just quietly passes away. Has anyone had this experience and what did you do?
I want to comment on the no food, no water. During the dying process the body shuts down. First think to go is the swallowing reflex. At that point food and drink should not be given because the digestive system is shutting down. Its worse for them if you try to force it.
StayingYoung, I am so sorry for your loss. I hope your good memories will allow you to celebrate the longevity of your mom, and the love you had for one another.
Trust me she will always be with you.
Clearly your mother can make this decision.
Clearly this is your decision now to make for her.
I just find this whole thing so utterly tragic that I will leave your decisions to you, and I hope the hospital will soon call in the ethic committee to help you to understand that your mother has had a long life, and is now at the end of that life; that further intervention is truly, to my own mind abusive, and at the least of little worth.
I have long had written in my medical directive that NO ONE should give me artificial feedings of any kind whether by peg, ng or IV. And that nothing heroic such as ventilator or cpr or dialysis should be done. I am surprised in all her long life that you and your other have not discussed all this; it is very sad. I am so sorry for you both.
Loss of appetite is natural: As the body prepares to transition, it conserves energy, and the need for sustenance decreases significantly. The person is not suffering from lack of food or water; they are not eating or drinking because their body no longer needs or can process it.
Hunger and thirst mechanisms shut down: A dying body's biological mechanisms for hunger and thirst begin to shut down, which is why people often don't ask for food or water.
Comfort over nutrition: The focus shifts from providing nourishment to providing comfort and ease. The priority is to ensure the person is comfortable and not in pain.
I watched both of my parents die w/o food or water, and I also listened to the "death rattle" Cheyne-Stokes breathing which sounds gruesome, but causes no pain to the patient. I feel it's important to understand all of these processes so we realize nothing was done or happened to cause them pain or to hasten their passing.
My condolences on the loss of your dear mom OP.
PS: The cause of my obstruction was addressed and my obstruction resolved in the nick of time (avoided surgery). I lost a ton of weight but fully recovered. Scary as hell reflecting on it, but in the moment, all I cared about was relief from the pain.
My thoughts are with you during this time, and I’m glad your mom made the decision which took it out of your hands.
Mom is dying . Dying is natural . Right now her death is being unnaturally prolonged .
I’m an old retired RN. Back in the day before hospice , I saw many people die slow deaths due to IV’s.
Her bowel blockage is the death sentence , not hospice.
You mom has had a long a blessed life.
Your mom is 96
She has an inoperable bowel obstruction
She has fluids going into her to keep her alive
You want to keep her in a hospital because she would not survive in a facility.
"Stayingyoung" this is no way to "live"
Please tell me that you would not allow CPR on her.
Please talk to her and ask her what she wants.
This situation isn't about you, my friend, or what you believe or wish would happen to make moms passing as easy as possible. It's about what IS happening which isn't pretty and requires tough decisions to allow mom to pass without pain, while allowing you to believe you made the most compassionate decision available. If this were me, I'd get mom on hospice care immediately. Get her on a schedule of morphine to put her into a deep and dreamless sleep. Then you can have the tubes and other IVs removed, and allow her to pass naturally.
My mother was 95 and on hospice when she passed peacefully in her bed after being semi comatose for a week. I was grateful she lived so long but also relieved she was finally at peace with God after suffering for years with dementia. When it's time to transition, we have to accept that fact and accommodate the process as best as we can. My husband had to make the decision to take his mom off of life support at 60 yrs old. He didnt kill her; God took her Home. Only He gets to decide the day and time.
Wishing you the best of luck with a difficult situation.
They aren’t hastening her death- that is murder and it’s illegal.
There is no rehab who would take your mother who is in the dying process already, has a non operable bowel obstruction that is actively killing her and who has been immobile for 5 years.
I’m sorry your mom is actively dying and you don’t want her to. It’s really hard and I wish you good luck as you move through the process of grieving your mom’s impending death and your grief process afterward.
Dying from a bowel obstruction is horrifically painful. Hospice will allow your mom to have a pain free and calm death with dignity.
In other words, your mother is already dying and it doesn’t matter in the end if she is in hospice or not. It’s not like she is suddenly going to begin the death process once she gets into hospice. She is already at the natural point of death and my husband is a doctor who deals with bowel obstructions every day. She is going to have a painful death process as she goes septic and that is if her bowel doesn’t perforate first which would be a terrible thing to allow to happen to your dying elderly mother.
I personally think you are making a mistake by not putting her in hospice, but it’s obviously your decision and not mine. All I know is if I was where your mom is, I would want my children to stop trying to fight my death and allow me to go after I have lived a long life. We are all born to die. It comes for all of us and none of us can run and hide from it.
I was her MPoA. Prior to the stroke she was still mobile, living in her own home with the help of 2 family caregivers. She had all her mind and was just a tiny bit forgetful due to the CHF.
After the stroke we was completely paralyzed on her right side (dominant side). She could no longer talk but I could see she was still "all there" in her eyes, and she could squeeze my arm with her left hand to answer questions. Her Advance Healthcare DIrect said no heroic measures but was not very specific. She could no longer swallow, which meant a feeding tube. She couldn't blink her right eye so required drops.
From this forum I learned that a feeding tube is an awful thing in the long-term. There was really no hope for my Aunt to recover - she would only exist. I had to make the decision to start the Ativan (because I could tell she was freaking out with all the touching and turning and moving the medical team was doing (plus she was an extremely shy person in real life). Then I ok'd the morphine. After that she was not present mentally. I got her in-home hospice set up (as was her wish). After 4 days there (on oxygen, morphine and Ativan), she passed peacefully and pain free surrounded by her loving nieces and nephews and friends.
This was a painful thing for me to do, but truly there were no other options for her except prolonged suffering which would end in death, anyway. You need to keep reminding yourself of this.
My own Mom is 96, is still mobile with mild/mod dementia, and lives next door to me. I am her MPoA. I know for certain I would make the same decision for her, as the "treatments" and "therapies" would only add quantity and not quality to her remaining days. It will still be profound and painful to do, yet there is no better "solution". She will go out peacefully and pain-free if I can help it.
Just be prepared that if you approve anything like Ativan and a long-term morphine drip, she may go into the twilight really fast (as my Aunt did) so be sure to say to her things you wish to say before this point. I chose to think that even after this point my Aunt could hear me, so I spent the night in the hospital holding her hand and occassionally whispering my love to her.
I wish you peace in your heart as you make decisions in your Mom's best interests.
I am very sorry that you chose a feeding tube in these circumstances. It truly is torturous. I myself would have contacted Hospice with the doctors' help.
I am very sorry you have so little understanding of how hospitalizations work. Your poor mom is now in no need of--in fact cannot sustain--hospital intervention. She needs care, yes. She should be transferred to either in facility SNF or Hospice for said care.
I would consider seeing a psychologist. You are going to need to support of someone trained to help you see through what is the natural progression in life. Just a few visits with a licensed social worker in private practice dealing with life transitions may be an enormous help and comfort to you.
Your mother is dying. Your inability to accept this is going to harm her, and is in fact also self-harming to yourself. I hope you will seek help. And I am so very very sorry for your grief. I am 83. I am dealing with my second bout with cancer. It would bring me only agony to think that my own daughter would not/could not in the end celebrate what has been a long and contented life for me, and that she wouldn't go on making her own life one full of happiness and satisfaction.
I think the question now is, what would my mom want? Would she want to suffer the way that she is? How was your mom's character? Did she demand dignity and respect? When you two had end of life discussions.... what were her thoughts? Clearly your mom had no advance directive or POLST in place. The doctors are turning to you now because they are aware of the suffering that your mom is enduring. You are your mom's voice.
Maybe the easiest thing to do is recognize that mom has lived to 96 years of age but for the last 5 years there has been little to no quality of life. Allow you mom the freedom to go and be with her deceased loved ones. Envision her embracing them with a big smile on her face finally free from the pain and running free in paradise.
I would ask you to try to consider these thoughts…
Instead of thinking of removing this tube as ‘hastening her death,’ think of keeping all these current treatments as ‘prolonging her suffering.’ And hospice doesn’t hasten death. Hospice eases the pain and suffering that comes near the end. Hospice isn’t you providing a catalyst for her death. Instead it is all of you accepting that death will come in its time, and no longer fighting it with treatments to draw out that time.
My mother passed away in peaceful sleep - as she had hoped to do - with gentle, caring Hospice angels holding her hand and making sure her last hours on this earth were as pain-free and comfortable as possible.