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.
1 - Have a temporary feeding tube placed down her nose into her stomach. A Dobhoff tube is thin, very flexible, and well-tolerated. With a nasogastric tube, she can receive medication, liquid food, and fluids that she needs to survive. This will work in the hospital until she is strong enough for other options.
2 - Let the interventional radiologist be the "lead" on how to get a gastric tube placed. He or she is a specialty doctor that can perform surgical-style procedures using radiology to guide placement. Whether he/she can go through the "original hole" or need to place a "new hole", let their advice guide you.
3 - Your mom can be placed on anticoagulation medication until she can have her new tube placed. With most short term anti-coagulation medications in the hospital, she would only need to be off them for a day at most before the procedure. After she heals a bit, she can be restarted on anticoagulation medication that can be used a rehab or long term care facility.
4 - Ask to speak with social worker or case manager about your mom's placement after the hospital. Hopefully, there will be space for her in the rehab facility she just left. If not, the case manager can help with placement in other facility that meets her needs with her insurance.
5 - Talk with doctor about your mom's DNR/DNI status. She can be a DNR/DNI in the hospital. Talk with the doctor about what options are available and get that implemented in her care. Sometimes, the doctor may get a referral to palliative care to help you with understanding all the options available as well as actually writing the order once you have made your decisions.
For myself, I requested no feeding tubes or other drastic life prolonging types on my health directive after 24 hours, so let me die to stop further suffering.
You want to be as well informed as you can be.
Perhaps get a second or third medical opinion.
Is your mom in pain? If so, does medical provider give her something for this?
I do not know if anyone can tell you if you are 'delaying the inevitable' in terms of decision making. These are difficult circumstances / decisions to be made. Everyone is different in their values, spiritual beliefs. You need to do what is best for your mom.
If it were my mom and she was coherent, I would take her lead - honor her wishes.
Are you religious?
Do you have a paster / spiritual guide / leader?
You could also ask to speak to the spiritual leaders at the hospital.
Perhaps not for answers, but for support.
Should this tube be replaced, insure that it can't be touched in ways where your mom can pull it out. I am a bit surprised that it wasn't more secure to begin with although I do not know how these things work.
Gena / Touch Matters
It will save billions of taxpayer dollars to use for healthy seniors.
One document to set up is the POLST order to stop life saving machines that prolong life with no hope of recovery.
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.
I am sorry she and you all had to go through that.
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.
Mom had no formal directives for her care, so we listened to the advice of her physician. The plan was to take her off all meds for severe pneumonia and transport her to nursing facility to die quickly and peacefully. Her death was anything BUT!!! My brother and I and a nurse's aide gruesomely watched 4 to 5 hours of Mom gasping for breath, sitting up in her bed with fear and agony until she finally collapsed and died from exhaustion and drowning in the fluids in her lungs. I tell you this because your Mom sounds like she's medically somewhere in-between my Mom's 1st and 3 stroke. Your mom still has her cognitive abilities but will need long-term car for many physical needs and food nourishment. That may be quality of life enough for her, especially if the feeding tube can be used successfully again.
Based on our and our mom's horrendous outcome, I wouldn't be too abrupt to throw in the towel, and perhaps instead consider the reinsertion of the feeding tube. Starving or drowning in your own bodily fluids IS NOT A HUMANE WAY TO DIE. If there are no other options for her to go on with some acceptable quality of life left, then definitely bring hospice services into the picture....they at least have some sense of humanity. Do not assume people/professionals who encourage you to not seek further medical attention for your mother are giving you the full picture of what to expect. To this day I have nightmares over the way I agreed to let my mom die! She deserved so much more dignity!
Although he initially seemed to be improving a bit in rehab, dad never regained the ability to walk or talk. After several months he began to have serious problems with edema from his preexisting congestive heart failure. Just over a year after the stroke, he got COVID-19, developed a systemic infection probably from ulcers on his legs, and passed away four weeks later. Although his advanced directive did not include DNR or DNI instructions, during those last 10 days or so it was obvious we were near the end, and it fell to me as one with medical POA to sign DNR and DNI forms and start what they called "comfort" care. Regardless of what he had put in his advanced directive 30 years ago, I know he didn't want to continue "living" like he was.
From my experiences, I think a key thing for someone after such a stroke is if they are able to really succeed in rehab. Whether it was damage from the stroke, memory loss from dementia (already a problem for dad before the stroke), or just a lack of will, I think he just wasn't able to "do" rehab.
Like others, the directives in place say a lot on their own. The inevitable outcome to anyone having a stroke at older ages is scary. I have been having the tough talks with my aging parents. Making certain wishes in their current Will and POA paperwork is still what they want. I am watching them fade and decline and it isn't easy to watch. My mom was recently diagnosed with Dementia, and I see her struggles are worsening.
Ask yourself if you are certian you know without doubt what she wants, and then stick to that. No matter how difficult it may be, you will make it through and life will go on. My best to you in this, and your best to your mom, your love for her shows.
Current placement is too high on stomach.
But for PEG, she would not be alive today.
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.
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.
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.
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.
That would be the kindest thing.