JennaRose Asked June 2019
My 93 year old Mom is in the ER after falling and excessive bleeding (doctor said she has diverticulitis), she wants to die. Advice?
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During the night my Mom fell down twice and I noticed blood coming from her rectum (which I have seen before from her using her fingers to put up her rectum). This morning I called an ambulance since she couldn't walk at all and I thought her bleeding was excessive.
So far she has been given 1 unit of blood and she told the doctor she wants to die meaning she doesn't want any more transfusions.
Doctor wants to know if I want her to keep receiving transfusions or not. I don't know what to do. I just got off the phone with the doctor and I said to give her another unit of blood and let's see what happens in 2 hours.
What do you think?
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They did ask me if her heart stopped what should they do? In her living will she has DNR. This is very scary.
My original post: Right now, you don't have much information to help you make a decision, such as is this terminal or something easily fixable.
A side note: does your mom have a living will or end-of-life instructions to guide you as you find out more?
I know you're struggling to do what's right for her. She's 93 and your profile states she has dementia/Alzheimer's. Sometimes what's right is giving her what she wishes. Please keep us updated on how she--and you--are doing.
Remember, she already has a life limiting condition.
Does it address the question of living with dementia? Does it talk about what sorts of life saving measures she wants taken?
Your mom has a life limiting disease and now she's apparently got internal bleeding. In her condition, I would not want to be scoped or have surgery. If they have to resect her bowel to stop the bleeding and she ends up with a colostomy bag for the rest of her life, will she be a happy camper?
Have you asked if hospice services might be appropriate? Is there the possibility of medicating her to keep her comfortable and not intervening?
I'm so sorry that you are having to make this very hard decision. ((((((Hugs)))))).
No, I would not want her to have surgery.
Another doctor just called from the ER and she said the bleeding is not only coming from her colon but also from her upper intestine. The only way to keep her alive would be surgery which I don't want my Mom to go through.
We talked about hospice where they would make her comfortable. They said she is going to die, it's a matter of time now.
I need to calm down (was up all night) and I'm going to the hospital. They will move her out of the ER to another room to make her comfortable.
Thanks everyone,
Jenna who is crying so hard right now
I found this out by accident some time ago: click on the person's name. The profile pops up stating, "I am caring for my mother". "Mother" is in blue text and is underlined indicating it's a link. Place your cursor on the blue text, and a tiny dropdown window will open with more information.
Know that we are all here with you, holding on tight. (((((Hugs)))))))
After we had taken him home from the hospital he developed a complication from the surgery. You know, one of those things they warn you about when they lay out the procedure, but you don’t really listen to cause they tell you it’s rare...
But this time it happened. At first they couldn’t find the problem and after a few days of tests they were ready to release him from the hospital. The night prior to going home Rainman crashed - crash team in his room, 11 people working on him, a doctor sitting straddled on his chest... Rainman is completely non-verbal but that night - for the first
and only time - my baby said two words appropriately strung together - “No, Momma - No!”. He said it repeatedly. It was the worst night of my life.
At 3:00am a surgeon specializing in intestinal/stomach procedures was helicoptered in. Right before they wheeled Rainman into surgery they handed me a release to be signed - that I authorize them to put Rainman on a colostomy bag if necessary.
As horrible as this sounds - I actually hesitated for a minute. The thought of Rainman on a colostomy bag was unimaginable. He would have hated that. He would have always been fiddling with it. Hell, to this day I regularly Q-Tip small wads of paper from in his ears... Can you imagine what he might have managed with a stoma?
But, I did sign. Rainman, other than his severe autism and slight cerebral palsy - was a very happy and generally really healthy guy.
Now, I absolutely am not saying - your mom is 93 - lived long enough and to go ahead and let her pass. I do not mean to imply that at all.
About a year before my mom died she was hospitalized for a fall. Because my mother had a very detailed, very strict Advanced Directive, her doctor had me sign a form saying I authorized an antibiotic to treat some cellulitis she had on her calf. Because - the antibiotic was technically a life saving measure - if left untreated the infection eventually turn into sepsis. But, seriously? I just couldn’t let my mom pass from something that was so easily treated.
Internal bleeding from a busted diverticula is not so easy to treat. ESPECIALLY in a 93 yr old woman who is already suffering from dementia. And, a colostomy bag and stoma? I can’t even imagine. Sheez - the difficulties and dangers don’t even start there. They start with the anesthesia and it just gets worst from there. And, I do mean for your mother firstly and then her family and caregivers second. Gut surgery, while fixes some things, makes a whole lot of other things more complicated and difficult. Whatever quality of life your mother still has at her age - with dementia and with the usual declines and limitations that go with living that long - that will pretty much disappear. In addition, with gut surgeries- one tends to eventually lead to another.
Rainman made it through the surgery with out a resectioning and
colostomy bag. THANK GOD!!! The surgeon said it was 50/50 so he took Rainmans autism into consideration. This meant removing a large section of his damaged intestines which in turn - has lead to a live of eating a certain way and
me keeping track of the specifics or Rainmans bowel movements as if I was documenting the details in curing cancer. The surgeon told me it won’t be a matter of something going wrong in his intestines again - it’s a matter of when.
Even with his restrictions, Rainman is now healthy and happy. I’m not sure your mother would have the same outcome. I so sorry. But take what time you’re able and think it through. Refer to your mothers Living Will. What would she choose - if she were able?
Hospice will keep her from suffering, please use the services they offer for you as well. They can truly be a lifeline during this difficult time.
May God grant you strength and peace for this journey, may He give you grieving mercies and comfort. May your mom be granted peace and comfort as she leaves this worn out body.
Hugs!
My Aunt is sleeping over in my Mom's room tonight and I'm back home but only 10 minutes away from the hospital in case my Aunt calls me and I need to go back in the middle of the night.
I did tell my Mom earlier it that was okay to go and that I would be okay. She thanked me for that.
Later on she cracked some jokes and seemed like her old self (still with dementia).
I don't know what to think. It's such an emotional roller coaster.
I talked to the nurse on the way out and she said the doctor will re-assess my Mom in the morning.
Thanks again for everyone's support as it means so much to me.
Jenna
Sounds like she has improved a lot. I say this as usually a nasogastric tube is inserted through the nose and hooked up to suction to remove stomach contents especially in the small intestine & the patient is not to take anything by mouth.
Sounds like she had a low red blood cell count & needed a transfusion- she could have a slow bleed internally. Anemia can cause one to pass out.
I am amazed she she was able to eat! That’s really good news. What did her team do to get her back to that point?
I hope you find peace during during this difficult time.
Tell me - does your mother have any idea of how that section of the rollercoaster felt?! Oh boy. Deep breaths, and may she just trundle along for a while now :) Hugs.
She looks great and is cracking jokes again as well as singing to the nurses. My Mom is an amazing woman with a fantastic sense of humor!
My Mom chose to have further transfusions, I wasn't even there. Right now she wants to find out what caused the bleeding in the first place and wants the tests. She had the CT-Scan this afternoon and the doctor explained to her about the scope to find out if she has a bleeding ulcer. My Mom wants to have this done.
If (and I do dislike the if word) my Mom didn't want these tests done as well as receiving transfusions then I would respect that.
I was prepared to lose my Mom yesterday but during her comfort care (getting a morphine drip) she changed her mind. My Mom is a very strong-willed woman and she wants what she wants. All I can do is respect her wishes no matter what they are.
She has suffered from stomach pain for a while now and if she does have a bleeding ulcer I think she would be relieved as she wouldn't have that pain anymore.
Tomorrow early morning she will have the scope put down her throat and then we will take it from there. The gastro doctor pressed on her stomach this afternoon and my Mom said it hurt in the upper area.
Again, it's a waiting game. My Mom and I will talk about everything after we get back the results of her tests and take it from there.
Thanks for caring,
Jenna
Mom had the endoscopy procedure done and a partial colonoscopy which revealed 2 bleeding ulcers, one in her upper stomach and the other in her rectum. The doctor closed them both and mom is doing good. Cause of bleeding was found which is good news.
My step Mom when she was 90 fell and broke her hip. Theyy said it would be a year of recovery. She said NO THANKS. She refused the surgery 4-5 days later the infection took her. She went peacefully in no pain. She led a good life. He children had power of attorney etc, etc. They could have over ruled her. Why?? She was in a nursing home by now and it would have been against her wishes.
If you take this fall out of the picture is your Mother otherwise normally active, enjoying the day in some manner? My guess is no. Is carrying for your Mother a great joy to you? It does not interfere with your normal life?
The only winner in this game of prolonging life is the medical industry they get the money. Your Mother suffers. Probably you do to.
Why do you get to defy her wishes??
Allow nature to take its course.
How advanced is her Dementia? Can she make decisions at times? Does she understand? If the answer to the last 2 questions is NO then it is up to you to make the decisions that are in her best interest.
If she often uses the phrase "I want to die" when she is uncomfortable, in a frustrated state, not feeling well then I would not put much stock in that phrase alone.
If however she has never said that then it might be coming from a "clear moment" in her.
I would say if she needs further treatments I probably would not do anything. I would not subject her to a colonoscopy or other invasive testing, no surgery. Keeping her comfortable would be the first priority at this point.
When she turned 90 she said to me that we needed to have a serious talk and said to me that she may die and that she lived a full life as well as a good one and I'm not to be sad when she's gone.
Please read below: She already had an endoscopy and a partial colonoscopy in which the doctor found 2 bleeding ulcers and closed them up so they found the cause of her bleeding.
She's doing great for now.. Who knows what will happen next week or in a month or whatever? One day at a time, right?
Jenna
I don't know if this is the right place to ask this question. Why do doctors tell me to prepare for the worse? To protect themselves for legal reasons?
As I have posted the doctors called me up 2 hours after my Mom was first admitted into the hospital and told me it was a matter of either minutes or an hour before she would pass away which scared me to no end.
Why do they tell me this when they were sooooooo wrong? How can I believe them the next time this happens?
I was a wreck, in shock, etc. I personally don't think doctors should tell the family member that their parent is going to pass until they have all the facts. Again, I think they say this to protect themselves for legal reasons.
What do you think?
Thanks, Jenna
I'm sorry that you had this shock, glad that it didn't happen, but above all anxious that you don't leave yourself unguarded.
"How long have we got, doctor?" is the question they absolutely dread. They cannot win. If they don't warn family members of possible fears, they are blamed. If they do, and they're wrong, they're blamed.
I hope that your mother will recover well and there will be more time. But at the same time, just as a complete outsider, I can see that she's 93, has a number of serious health conditions, and has just been through a dangerous crisis. I say again that I am so happy for you that they have pulled her through, but take it one day at a time. It's all you and your mother's doctors can do. The facts are so complex, and change so fast, that there can't be any certainty.
Who's there for you to talk to? Is your aunt around? I'd like to think you have emotional support with you - as well as online :)
Thanks for explaining this to me, it makes much more sense now. No, the doctors can't win no matter what they say. And you are right about taking it one day at a time which I normally do. I know my Mom may have 6 more months, maybe less, maybe more. No one knows. What is meant to be will be.
My Aunt lives with us but my Aunt sees everything through rose-colored glasses and lives in denial about her own mortality. The more realistic person is my best friend of 45 years who was at the hospital with me when the doctors thought she wasn't going to make it. And I have other friends who have been very supportive and offered to be with me which I said no as my best friend and my Aunt were enough for the time being.
Thanks for asking about this as I know support is so important. One of my faults is I am stubborn and normally do not like to ask for help. I need to learn how to ask for what I need. People tell me all the time that they think I am a strong person and maybe I am in some ways but not in every way. My stubbornness gets mistaken for strength, not good.
Thanks again,
Jenna
Jenna
I also believe that hospitalists are there because they can't get a real job in medicine, when medical errors are the 3rd leading cause of death in the USA it says all I need to know.
Twice I was told that my dad would not pull through. Still going strong.
Yet I agree with you that most doctors do jump to the text books (and the CDC website) and believe what they read instead of looking at the entire person as a whole. I think the gastro doctor was the best because she wanted to find the root cause of my Mom's bleeding and she found it.
She suspected the ulcers by pressing on my Mom's stomach and when Mom said "ouch!" she kind of knew. I myself had several ulcers when I was in my 20's (not bleeding) and I remember the pain. Antibiotics cured my ulcers as I had the h. pylori bacteria.
I didn't know that medical errors are the 3rd leading cause of death in the United States but that makes much sense. That's why I do my research!
Talking about research a story about myself: 15 years ago I contracted lyme disease and went from doctor to doctor for a duration of 5 years without getting a diagnosis. I then researched my symptoms on the internet and knew I not only had lyme but a co-infection called ehrlichia. I finally found a doctor who tested my blood at a reputable lab and sure enough I was CDC positive for both. Because I didn't respond to antibiotics I turned to alternative medicine which healed me 14 years ago.
This is why I don't trust most doctors. They have to earn my trust.
Jenna
I'm so happy she is coming home!! My Aunt is also thrilled as my Mom and Aunt both play cards every afternoon and they miss that (my Mom is a real card shark and always beats my Aunt, ha, ha!). They also love to watch Wimbledon as my Mom knows most of the players.
Jenna