In her very clear mind she decided against the risky surgery and chose to go home on hospice and die within all of her children and grandchildren around her. She is so very strong and has outlasted the days to a couple of weeks that the Drs predicted. She has been home almost a month. She is now in the active dying phase. How do we deal with outsiders telling us we should have made my mom have the surgery. She made the right decision for her. She was at peace. It’s getting so frustrating hearing people tell us what should have been done. We are taking great care of my mom & wouldn’t trade this for anything. My dad & sister both died of cancer in their 50’s mom is content about reuniting with them & the rest of her family. I’m so sad at the nerve of people
So just say in future "I am sorry. Medical information is private and I am not comfortable discussing Mom's diagnosis, prognosis and choices with you. Please refrain from discussed medical problems with her. She is on hospice and she is actively dying. Please honor her wishes for peace so that I can allow you still to enjoy happy visits and memories with her her".
The end. Full stop. This is not their business, but people are busy-bodies, and that has been true forever.
I am so sorry for this loss. I am so thankful you are honoring your Mom's wishes and that you are at peace and she is being kept comfortable.
god bless you your mum and the rest of the family. Love and enjoy every last day with your mum and yes she will be at peace and that is a great thing to have. Sandra.
Recuperating from this surgery would have been horrible and she may have ended up with an colostomy bag. (Maybe ask these outsiders if that would be to their liking if this was happening to them). Too many people are told about surgeries and treatments that overly optimistic doctors recommend. At 86 the odds of other things going wrong are very high. It’s not unusual for people to live longer when they enter hospice. Who are these know- it-alls to presume they know better? They aren’t walking in her shoes.
End of conversation.
Prayers
I said "I respected my dad's wishes. Thank you, but this is personal, private and not up for discussion."
My dad had a blockage (tumor) at age 87. The dr said he could opt for surgery or die from an obstructed bowel (we were told this was a painful way to go). Opting for surgery would probably give him another year of life. He was given the pros and cons and decided to go for the surgery option. It was his decision.
He was already frail, had the surgery, and never regained enough strength to walk again. He lived another 17 months, 3 of those in and out of the hospital and re-hab.
During that time, he was in at-home hospice care, so as his primary caregiver, I enjoyed their daily personal care visits (bathing, shaving, oral care, diapering...great hospice agency!).
He did get to go to church a few times during those final months, two funerals of friends, twice to the cemetery to visit my mom’s grave. Yet, it wasn’t an overall good time those 17 months. He was depressed from my mother’s death just a month before his surgery. He managed with a good spirit just the same, but life never regained the quality it once had for him.
Absolutely, you have peace of mind that you allowed your mom to make the decision for her care with no pressure. Bless you, your mom, and family! You sound like a wonderful family!
When mom forgot how to eat and drink as a last resort I asked mom if she wanted to go to the hospital. She said yes. She had a very lucid moment. I asked her I'm calling 911 and take you. Is that what you want. She nodded yes. I simply took her off hospice, her Medicare took over, got the feeding tube, and reinstated her hospice afterward, and yes you can do that. I did it. You do not even need a doctor's order to reinstate it, because hospice never rejected her. She was on hospice for 2 years.
Best decision ever. Mom did not have to die slowly of DEHYDRATION and in fact her last days were very comfortable because all her needs were met. Granted the feeding tube was a *LOT* of work to keep clean and patent but she never bothered with it and never had a problem with it. I kept it covered with a "tube top" I got on amazon which was comfortable for her. I was also able to tell when she was actively dying because normally there were no residuals. When she had residuals I knew when to stop feeding her (it was not being absorbed), and called in my brother and she died exactly one week later. Still I was able to administer some comfort medications through the tube although I never did have to give her any psychotropics or narcotics. She died so peacefully -- she just opened her eyes, took two deep breaths and died.
My brother and I were able to organize prepaid funeral. I could not have done that without my brother present.
Mom died almost 2 years ago and I'm still suffering her loss. Less afraid of life though. I mean I don't have to worry about her anymore. I was her sole caregiver so that put a lot of stress on me, but I would cut off my own arm to have her back. Still, that's a selfish thought. Mom is better off where she is. She was eaten up with Alzheimer's. Still, regardless, I kept mom comfortable and surrounded by love and her own home, which was her universe.
Mom was sufficiently hydrated, and her skin was in perfect condition when she died. Ironically Alzheimer's disease did not kill her. She was insulin-dependent diabetes and years and years of insulin and chronic kidney disease (over 10 years of that) and liver disease did it, and she died age 90...that's a long life with all of those chronic diseases. I was her life support for years and years. Of all things she had I was able to keep her sugars in perfect check to the end.
People should be more sensitive about decisions, but tell them it is what she wanted -- but also remember death by bowel obstruction is a painful one. You spared her that. Just as I spared my mom of a slow agonizing death by dehydration. It can take TWO or more weeks to die without fluids.
Death is all of our fates. Mom was very lucky she was well cared for to the end. Not stuck is some freaking nursing home. I centered my total life on mom for years and years and do not regret it. I love mom and I would gladly do anything for her.
Now I have to deal with my own life. Back at work...going to university. But not a day goes by I don't miss mom because I love her so much.
That's the price of love--grief.
Frankly it seems like some people aren’t happy unless they are telling others how to run their business. If the shoe was on the other foot they wouldn’t like it.
I’m jumping ahead of myself because I didn’t read the whole comment but it burns me up when people tell others what to do when they aren’t living in the house nor are they the ones taking care of the patients.
My opinion (unsolicited and truly none of my business)- it was your mothers choice and you respected her autonomy. God bless you and your family.
he had been in a lot of pain and almost passed out. Thank God I was
there and called my nephew to come fir him.
Maybe your family can convince her your not ready to let her go just because she is afraid of surgery. Maybe she will change her mind. One way she has no chance to live to see her family , spend Holidays celebrate birthdays enjoy grand children . The other way Surgery she at least
has a chance at life .
sirry your going through this it’s a hard situation to be in. But in the long run if she’s of sound mind then it’s all her choice. God Bless you snd your family stay strong in the Lord . 🙏🙏🙏💕
Once the "cat is out of the bag", the best response is just this was mom's decision and she made it. End of story. There's no real need to be rude to them, unless they press on. Then just cut them off and say end of discussion.
It's her right to decide what she wants and no one else's.
All the people who offer their totally unsolicited two cents about it should just be told:
'It was my mother's decision and what she wanted'.
And let that be the end of it. No one is owed an explanation and certainly none of you have to tolerate anyone saying what you should have done or could have done.
If telling these intrusive, 'do-gooders' that it was your mother's choice is not enough and they continue to carry on, well... God gave us all two middle fingers for a reason. Use them.
We had a family member who needed a heart transplant. My DH cousin. He wouldn’t go on the list. I was so sad about it. He explained that he didn’t want to spend his last days connected to the heart hospital as when you are on the donor list there is a lot of red tape and you are pretty much tied up with the hospital from then until death. So if it was a success or not, his life would never be free of that stress. He and his brother had heart issues from a very young age. He had lived into his 60s and felt he had been on borrowed time for many years. Both parents died young of heart disease. So he chose to not have the transplant. His brother, 11 months older, chose to have the transplant. They both died before the older brother received his.
In my case, we were friends. He helped me with DH aunt. I really miss him. But I realized after we discussed it that I was out of line to question his decision. He was in a relationship. Had children, grandchildren. Plenty of people closer and more important to him to discuss this with. It was none of my business even though I knew of people who had done well with a transplant.
He didn’t appear to be upset with me but his purpose in letting me know about his decision wasn’t so I could talk him into it. I think it was a way of him dealing with it, of saying good bye and letting me know that his death was not too far off. He was the second nephew of aunts to die that was my #2 on her care team. So there was that as well. He was taking care of business, not asking for advice. I highly respected him and his decision. After I had more time to reflect, I felt embarrassed that I thought I had anything to share that should influence his decision.
I wish you and your mom peace.