On Christmas morning, my mom (79) was rushed to the hospital after having a severe left brain stroke impacting her right side. She lost speech and her arm and leg movement (arm is coming back somewhat). She was in the hosptial for 3 weeks due to atrial fibrulation (they think that was the cause of the stroke) and was finally released to rehab last Saturday.
This past Friday, when being dressed for the day, she accidentally pulled out her peg tube. We spent the entire weekend in the emergency room awaiting our options. This morning the interventional radiologist team attempted unsuccessfully to replace it. The current plan is to wait a week to ten days and attempt it again. The other option was surgery to remove and replace it... but they don't believe she is strong enough for this currently.
My question is, what are the options from here? I am second-guessing my decisions to support this course of action. I am her POA. She has a DNI and a DNR... but I don't have anything regarding feeding directives. She can swallow a bit, but does not seem interested in food. Puree is what she is able to have so I get most of it is gross, but even pudding or ice cream doesn't tempt her.
This has been devastating to her, and of course the family. I made the mistake of Googling the prognosis on a feeding tube. Am I delaying the inevitable? We lost our rehab placement becuase she is now back in the hospital.
I am hopeful she can return there when ready. It's been a month and she hasn't had a shot at rehab due to all these other issues. I would be grateful for any thoughts or options I might consider as I navigate this challenging time.
As for you and your mom, I’m so very sorry. Can your mother communicate in any way? If so, please have an honest talk with her, telling her the possibilities and seeing if she can communicate her thoughts. Do you want the feeding tube? Squeeze my hand with your good hand for yes, blink three times for no—whatever you can make work that feels like you’re getting her wishes if possible.
Another thing is a realistic talk with her doctors, seeing if you can get honest conversation about the chances of meaningful recovery. We didn’t have this, I would hope others are more successful.
Mostly, rely on knowing your mother, knowing the person she is and what she would decide for herself. And whatever that is, once it’s done, spend no time doubting either way. She’s blessed to have you caring so much. I wish you both peace
I think this is a sad but timely warning of how important it is to consider whether we would want peg feeding in such circumstances, now while we are healthy and can consider the implications. Later on could be too late.
How LONG the placement of a tube may delay it is anyone's guess, but you can, by providing this certain sustenance very, very long indeed.
Your message serves as a warning to ALL HERE. You may think you have a good advance directive, but if you do not make it clear to your proxy or POA that you do NOT want these life-prolonging measures they will be very hesitant to withhold and face the accusations of "you are starving your parent to DEATH". YOU will be right here, and if that's what you WANT, that's fine, but if you do not want dialysis, tube feedings, etc you had better make that very clear, indeed.
Back to your own mom, Stokedaughter. I am assuming that your mother is not able to respond to the questions about whether she wants to prolong her life or not?
Otherwise you would certainly have discussed this with HER, because this should, if she were competent at all, be HER CHOICE and HER CHOICE ALONE.
Now it is your choice. Once having started these feedings it is going to be much more difficult to stop and withdraw them. You would have to fight for that option as her POA and you had better lie like a rug--that she told you and others she didn't want this. Otherwise, if you believe that this is a life worth living, and that she would want to go on, you follow doctor advice as to when/if/how to get sustaining foods on board.
I wish you the very best, and I am so sorry you are going through this. I as an RN have LONG made it clear in my own advance directive that this, as well as other measures, would be anathema to me.
My daughter is an RN and feels, in the elderly, feeding tubes should only be used to get you over a hump. Should never be used to keep someone alive.
You are going to need to see how things progress. I personally would not send someone to rehab with Moms feeding problems. Rehab is generally for Physical therapy. Its not Skilled Nursing, not where I live anyway.
If she worsens, I would ask for a Hospice evaluation.
I'm sorry you are going through this, it is heartbreaking. I hope somehow your mom can communicate to you what she wants so you can have peace in any decisions you have to make.
That would be the kindest thing.
If it were me, and you were my daughter, I would like you to let me go.
Living with the effects of a stroke, AND a feeding tube would be TOO MUCH for me.
I just said goodbye to my mom and had the tough conversation with my dad to say goodbye. He was a trooper and did it all on his own. He is the one with the stroke, she had other issues including memory and passed 16 Jan. Hospice was the best in explaining / confirming what were were seeing. Not wanting to eat is one of those items.
God bless you and if you can get any contact with your mother, she can "talk" to you with eyes, with gestures. As POA your job is to respect her wishes, not second guess everyone else. I went so far as to remind my mother of a "lingering" conversation we had even six months ago - time to fight to get out of bed and get breakfast with your husband, or go see your Dad (one consist memory that she repeated). My mom was not communicative, but when I said "I need you to listen" her "no, no, no,.." stopped. She heard me and the reminder of the conversation.
YOU know your mom. TRUST that!
SO grateful for this forum!
Be kind to yourself while you grieve.
Last week one of the caregivers and me noticed she had a wry smile about some goofy comment I made and said that "I bet you live for that moment"!
I replied I did and give thanks to God for those moments and continue along with perhaps 40 other people daily pray for a miracle. I do have a palliative care nurse who visits every other week and we have had surgeries to address issues. My experience with PEG tube replacement is it is a 15 minute procedure, but does require anesthesia.
Bottom line, I would not recommend listening to too many others, but rather stay in communication with your loved one, such as it may be, pray, take steps to relieve pain and hope for a miracle and trust in God and keep your family involved, visiting and spiritually helping.