I’ve been my mother caregiver for 3 years now she has Alzheimer’s, CHF, she has a pacemaker with a defibrillator, I took her to her primary doctor about 6 weeks ago reg. Check up, they said were calling hospice I said no we’re not there yet, she saw her cardiologist 8 weeks ago, he was rude and wanted to know if I felt her quality of life was good shaking his head because it wasn’t anymore her body was failing. Last Saturday she began to decline fairly quickly she stopped eating, by Monday I called the dr. They had contacted hospice at her last appointment they gave me the number to call, I called all her paperwork health history everything was already there, a nurse was out in a hour with medication for several different things she may go through so I would be prepared to give as needed to help her stay comfortable, she was in pain that Sunday night, it was apparent she was dying and I just didn’t want her to suffer that was our biggest thing she and I talked about. I asked the hospice lady about her pacemaker she said call her cardiologist and they will turn off the defibrillator and if they couldn’t hospice had a big magnet that they could use, as soon as she left I called cardiologist left a message, his nurse called me back said I need to get the okay by dr. And definitely need to shut the defibrillator part off so it won’t shock her when she’s dying from altimeters not heart failure otherwise she will be getting shocked over and over again rather than dying peacefully as nature intended. Nurse said she would get back to me later that day that was Monday, well today is Wen. Still no call my mother died early this morning I woke up with 3 medium size dogs barking like crazy I thought maybe someone was outside I get up and there’s my mom getting shocked over and over and over again it was like she was being executed, how is this pain free? No one brought this up to me not once, both her doctors had the opportunity to take action and discuss this with me. They both new her days were numbered enough to call hospice enough to ask about the quality of her life why didn’t he say her body’s failing we need to shut down the defibrillator to prevent this from happening she was on a DNR at that point is not shutting that off part of a DNR? Her cardiologist asked me if we should resurrect would her quality of life be good the answer was no. I asked hospice about the pacemaker they forgot but I have to say they did not drop the ball they gave me good information and were absolutely wonderful with everything I was extremely impressed by them. Why didn’t her doctor do something knowing she didn’t have long to live, I just feel it wasn’t right, I didn’t tell anyone what happened because they are more at peace thinking she went in her sleep without any pain that’s what they need to hear. What do I do, do I make a stink over this so maybe it won’t happen again? Do I take it to my grave with those images in mine and our dogs heads forever that’s not something you can just take out of your brain you can’t unseen something like that, that would be branded into anyone’s brain if it were a stranger, but my last memory of my mom, she was such a kind nonviolent caring loved animals and kids she was a school teach for about 10 years, the best grandma and mother too nice for her own good people took advantage of her kindness her whole life, I don’t know anyone who could speak ill of her, she had a reputation for being the nicest lady you could ever meet she was a usher at church for years. I know I’m hurt and I’m writing this out of pain maybe my judgment is cloudy because of my loss today I can’t say for sure. This is the first time eve ever written on a board like this for others to read and get there input, it think I need to hear things from someone not right in the middle of the tornado. Thank you for your time.
I’m looking at topics this could go under a few, even elder abuse? I wish I Hurd about this website sooner what a great way to talk with others.
"Most of us have memories that flicker through our minds of things that hurt us in the past. We carry them always."
We cannot hide from or wash away the pain of something traumatic seen with our own eyes. It will return, however, less and less and will go from a haunting to a flicker if we let it. I know you are desperate to unsee what you saw, but you can't. You CAN understand it rationally, but it will still bring you pain. You can know your mom felt no pain, that your mom had you and your love to the end, and that she is now at peace.
Allow that pain, but don't let it take you over. Get the help you need; never was it more deserved. Love out to you.
My heart goes out to you.
If it would help you in anyway, you should contact all involved and let them know in graphic detail what happened.
So often, at the end of the day, we caregivers are so exhausted emotionally that we just want to move on. It will take effort and time to share your story. Do what is best for you.
I too would encourage you to seek grief therapy.
Many of us suffer from the final episode which is piled on top of what in some cases, has been years of care giving and all that comes with it. Time does help.
Sharing here on the forum helps you and others.
Sharing in person can also be another way to help the sting and horror of the vision dissipate, if not the vision itself.
Journaling is also a good way to process our pain. Writing about your mom’s life is a way to help you put this one episode that did not bring her pain, in perspective to her long well lived life. You have already started this with telling us about the important roles she played in her life for yourself and others.
EMSD therapy might be useful to help you release the pain and return to the love your mom represents in your life.
Most of us have memories that flicker through our minds of things that hurt us in the past. We carry them always. We learn to let them float out of our consciousness as they seldom serve us to live happy lives. It is a process of letting the pain go and remembering our loved ones in better, happier times.
Thank you for trusting us with your grief. Know that this forum can be helpful to you going forward and can be a way for you to help others when you share your caregiver journey. Wishing you peace.
This that you say is SO BEAUTIFUL:
"Most of us have memories that flicker through our minds of things that hurt us in the past. We carry them always. We learn to let them float out of our consciousness as they seldom serve us to live happy lives. It is a process of letting the pain go and remembering our loved ones in better, happier times."
The "flicker through". I feel that to my core. Things went happily so WELL for me with any losses of my family, mostly due to who they were. But there were a couple of times when I could not protect, could not fulfill, the memory of which hurts always and still, and is carried, and usually dormant but occasionally flickers through. And there's just nothing to be done about that but accept it, give it a few second of re-mourning it, and move on.
You captured what that feeling is so very well.
Now you know she was in no pain. I would notify Hospice and ask for grief counseling. Its part of their service.
I want you to tell the Hospice that cared for Mom at the very end that you need SERIOUS emergent grief counseling due to what you witnessed.
B, you and your mom were let down in this medical system and there is no way around this. And what you witnessed will never leave your eyes. But there are two things, when this all comes into your head (and likely that will happen often at first, less as time moves on).
1. Your mother was dying of a failing heart. CHF means Congestive Heart Failure. There's no cure for that other than transplant, which isn't what we do with old people with failing hearts. Because all other systems are failing of age at the same time. She DID DIE.
What you witnessed was a machine, implanted to deliver a slight shock to the heart. It hurts a tad when you are alive, very briefly. But when you are DEAD your brain no longer has capacity to register pain. Your muscles for some short while will automatically react.
I am going to say something to you that SOUNDS crude, but I need you to understand your mom wasn't in pain. When we are, as nurses, in physiology, trained in dissecting a frog, that dead frog sometimes jumps around on the Petrie dish. But he is dead. He doesn't feel. Just that their muscles retain for longer than some, the ability to constrict and relax. A snake is the same. He can be fully dead with no head and just writhe around for a long time. But he cannot feel pain.
I am trying (the hard way) to let you know your mother was NOT IN PAIN. It was a machine and muscles.
And it is one of the most unimaginable things I can imagine an untrained person to have to see for her frail dead mother.
2. You have Hospice and you have MDs and you have a RIGHT to speak to those MDs about this and hear this, and be listened to. And a therapist.
And B., your writing this will help others. This isn't the first time we have had questions from people about what they should do about the implanted defibrillator.
B., I am so sorry. I cannot IMAGINE this image in your head and I am a NURSE, and could not imagine it in my own. I am so dreadfully sorry.
OP please let hospice know that you need grief counseling.
In all reality you could have called the doctors office back Monday late afternoon or Tuesday to get the answers you were looking for instead of waiting for their return call, or had hospice call them, but that is water under the dam now, and your mother would not want you holding on to anything negative pertaining to her death.
She is at peace now and that is the bottom line. And she would want you moving forward in a positive and healthy manner in her honor, so I hope and pray that you'll do just that.
And on a side note...when my late husband was in his 6 week dying process and under hospice care in our home, he was not only in extreme pain that hospice couldn't get under control but was very agitated as well, and the whole process was extremely difficult for me to witness as his wife.
Plus he didn't eat for 41 days and drink for over 25 days, and watching him wither away before my eyes and make horrific noises especially the last week or so of his life, was beyond traumatic for me, and left me with PTSD after he finally died.
My husband has been gone for over 4 years now, and any time the picture of him on his death bed tries to creep back into my mind, I immediately replace it with a happier memory of him which works every time.
So I hope that in time you'll be able to do the same as your mother wouldn't want you lingering on her death but would instead want you lingering on her life.
My God bless you and keep you in the days, weeks, and months ahead.
Why did hospice not come out with the magnet and turn it off? Did you call them? (Its hard to read without paragraphs so maybe I didn’t understand this part)
My guess is that the doctors were off for Thanksgiving and perhaps out of town and the message system was backed up with everyone who called. This is not an excuse but perhaps a reason why you haven’t been called back yet. You can always call the nurse back and ask her why.
I don’t think there is any action to be taken here. Just my opinion.
I honestly feel that you can't take action with the physicians with your decisions for Hospice or the defib. You stated in the first part of the post you rejected their suggestions and thought they were rude. Just because the doctor was abrasive (so many are indeed abrasive for reason of their own) doesn't mean lack of medical direction. I always advocate for Hospice earlier rather than later for direction and guidance which is what you received when you accepted Hospice care.
This is just so wrong and I'm so sorry. I'm speechless.
Do you have any close friends you can share this with, it's gotta be so hard holding it inside, and please find an in person support group, and if you don't have one please think about getting a therapist.
I will say , you sharing your story will forever be in my mind, and you sharing your story won't go in vain. It will help someone to never have to go through this.
Others, more knowledgeable will have more to say on the medical aspect and there feelings.
I just wanted to you how deeply sorry I am. No one should go through this! 🙏😞