My grandma had her appointment with the super specialist today and we got really really bad news. Her throat is so jacked up from the radiation now that they want to put a permanent feeding tube in. Mimi has made it clear that if it ever came to that she would rather us let her die. Her last experience with feeding tubes was that bad for her.
I'm really at a loss. I can't bear the idea of my mimi dying, let alone watching her waste away or asphyxiating to death. I just can't deal with it. I've already held papa as he died that way I just can't face it again not this way not at all, but at the same time i don't want mimi to suffer and be unhappy, and it is her life and her body and ultimately her decision and i have to respect it.
I hate it. I feel like I'm in quicksand up to my neck and being crushed by a boulder at the same time.
Now i know why mom gets so mad when i try to talk about how my disease will kill me someday. It's just not okay. I can't breathe it hurts so bad.
I don't want to go through this all over again
Edit:
I should have clarified, not accepting her wishes WAS NEVER EVER even on the table. My family has ALWAYS been on the side of patient rights and that includes the difficult decisions with our own. My own traumas and emotions are still allowed and they DO NOT mean i would ever stop her from making her own choices.
8
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13 comments
Feel free to reply to any comment by clicking the "Reply" button.I'm truly sorry and deeply saddened for you, your Mimi, and your entire situation right now. Perhaps holding onto the good memories of your Mimi, what she means to you and the person she is, might give some comfort now and after she passes. And also be sure to seek and accept the emotional support you need from others close to you or from anyone you can turn to.
If you should feel like telling us a little about Mimi and what she is like as a person, I might like to hear that too.
AlasBabylon
Level 8
May 24, 2019
0
Someday I'll tell all of you about how awesome my mimi is, I promise.
I am sorry for your sadness, but unless you've been through throat radiation treatments you can't know the agony she goes through. I did 18 months ago. I do feel your grief to loose a parent/ grandparent. I watch my dad lay in bed and slowly die for over a year. It is hard to take.
Al-Bundy_59
Level 6
May 24, 2019
0
I have the most painful disease known to man, in my neck. I mean it's not radiation damage, but I do still have some semblance of an idea what it's like for her. I don't aspirate hardly at all as frequently, though, but as for pain mine actually far surpasses it.
Still, I appreciate your meaning.
I have not had to go through what you are. My Mother passed over ten years ago and I knew I was not going to be able to be there for her so I had a conversation with her during my last visit. Hard though as I wanted to be there but one cannot drive over two hundred miles on roads that are closed due to snow storm. I live with the love of my life who is always in pain. She has talked about suicide, at one segment of time I felt I might come home from work and find her, but that has not happened. She is now better than she once was but she does still suffer. One cannot take the place of the other for if that was possible I would have done that years ago. All one has is the time one has to do what one can, a simple almost nonsense statement, but it is true and one can only do so much. So do what you can, feel what you must and life the life you have been given.
dalefvictor
Level 8
May 24, 2019
3
Thank you dale that was very touching
Your story saddens me greatly. words are not adequate to describe my sympathy for both you and your grandmother.
putting that aside for the moment this does bring up some ethical question.
if your grandmother chooses not to accept any treatment what is the prognosis is she expected to die soon? what would her quality of life be like if she accepted treatment?
how would you deal with the moral and ethical question should she have the right to end her life in order to die with dignity?
I have not been faced with terminal illness in my own mind I imagine I would prefer a shorter life, with dignity over a longer life with illness and pain.
m16566
Level 7
May 24, 2019
2
I have, my entire life, supported right to die, even in cases where the diseases aren't themselves terminal but progressive and disabling such as parkinsons and dementia. I have been diagnosed with CRPS, the most painful disease known to man, also called the suicide disease because almost everyone with it commits suicide as it progresses to the point where pain management no longer offers any relief, and I've had to come to accept my own fate and have been actively trying to expand right to die to cover my own disease so that when I get to that place I can die comfortably with my family around me and peacefully instead of with a gun in the woods.
My grandmother will die one of a few ways, wasting away from malnutrition or from choking or from pneumonia due to aspiration. These are all very slow and very painful ways to die and painful ways to watch someone die, but also not covered under the death with dignity or right to die acts. My state doesn't even have legalized medical suicide anyway even if it did. So there are a few ways it could play out. She would shoot herself before she suffered, poison herself but that leaves a chance for survival which she wouldn't risk, or she will allow herself to go slowly and naturally.
Either way, it's going to be even more traumatic for everyone than before.
We know she wants to fight and try to find treatments right now, so I'm HOPING she will choose the feeding tube at least until we are certain the damage is just too extensive.
I'm working on getting her to try stem cell therapy as I've heard it helps a lot with reversing radiation damage, and if possible maybe we can get her off the feeding tube before it comes to that point.
However ultimately it's all her decision and I think the hardest part of all of it is how helpless and out of my control it is 
perhaps it's just the rebel in me, I do not care about the law in this matter
@m16566 the problem with it is assistance in suicide is a major crime and I will not, nor would my grandmother, want anyone to sacrifice their freedom for us. That leaves limited options in the way of DOING such a thing as well since such medicines are kept incredibly monitored and regulated, and I'd rather not be there holding anyones hand while they shoot themself.
I can't speak for anyone else - I have my DNR and other documents signed and delivered - no feeding tube, no breathing tube, do not make me suffer, let me go.
SKH78
Level 8
May 24, 2019
2
I have my own. Somehow it's easier though to deal with your own impending demise than those you love
@LadyAlyxandrea True, I do not fear death except for what it would mean for Kate as she cannot live on what is available to her if I am not here. I fear Kate passing as I want her to be with me, but this is selfish given the state she is in. Life can be a bitch at times, but it can be fun while we are here.
@dalefvictor indeed, I'm much more selfish in that I would be more okay with dying than being left here all alone.
But I recently was enlightened that I'm never allowed to die because that would leave my disabled brother all alone in the world so looks like I'm stuck here forever.
Death is easy, life after death is much harder. I know you will miss her as much if not more than you miss your papa. Her memory will be eternal and will live on with you. Grief is one of the hardest things to deal with so enjoy as much time as you can with her. If she’s up to it fulfill some things on her bucket list. You’ll have those happy memories. Live the best life you can together and you’ll have time after she has passed to grieve.
helionoftroy
Level 7
May 24, 2019
3
I’m so sorry. It’s always hard to lose a loved one, most especially a grandmother. Many hugs as you begin this process.
It sounds like your Mimi knows what she wants for her end of life. The best way to honor her, is to accept it and support her. If you must, do your screaming and pillow pounding in private. (That’s what I did when my brother was dying from brain cancer).
I’m an RN and worked everything from birth to Hospice. No matter what, death is never easy especially for those left behind. I’ve placed NG tubes, and had them myself. Not very pleasant.
I understand about talking over your own illness issues—I’m in process of doing a living will and giving my daughter healthcare power of attorney. I know what my wishes are, so my family won’t have to choose(my illness will severely disable/kill me too).
Feel free to message me if you wish. I understand and I’m so sorry.
CarolinaGirl60
Level 8
May 24, 2019
1
It is very hard for you having so much pain and tragedy in your life and knowing there is more to come, but I agree with the other people who have posted - your grandmother has the right to make her own decisions and you will feel the better for supporting her in doing that. You will want control over your life, so respect her desire to control her life the last bit that she can. So many people have their last wishes refused because the medical profession think they know best, so if your grandmother is allowed to make her own choice then support her. She will respect and love you the more for respecting her, even though it is so sad and hard for you. You are such a strong person - hold up as long as you can!
CeliaVL
Level 7
May 24, 2019
2
I've never said I wasn't going to respect her wishes idk where everyone is getting this idea that I wouldn't. I'm still allowed to hate every second of it and have my traumas
@LadyAlyxandrea Sorry if I seemed to misunderstsnd or criticise. That was never my intention . Of course you are allowed to hate every minute of it. You have all our support.
@CeliaVL no I'm sorry that I struggle to word things in a way that people don't misunderstand when I'm emotional. I am often told I sound "unnecessarily hateful" over the internet.
@LadyAlyxandrea Don't worry. It is always hard without visual clues! Look after yourself.
My heart goes out to you. Death is an ugly chapter in our lives, but we all get there at some point. Please try and be strong for your grandmother and respect her wishes about how she wants her life to end. It is her right to go out in the way she chooses.
Redheadedgammy
Level 9
May 24, 2019
1
Why does everyone think I even have the ability to not respect her wishes?
@LadyAlyxandrea I didn't mean to upset you. I know from reading your post you have the utmost respect for your grandmother. My comment was, I see now not helpful. I am truly sorry for the pain you are having to endure.
@LadyAlyxandrea Sometimes when people talk about serious situations the view changes to them, not you. They are perhaps hoping that they will be able to do what you are saying you are doing.
@Redheadedgammy it's not your fault. I come off poorly on the internet when I'm emotional. Plus I was already emotional and I just got confused why so many people were saying the same thing over and over but I guess I just sounded wrong in my original post or something. It's not a big deal. I'm just kinda strung out
Ultimately, you have to respect your grandmother's wishes. Watching a slow dying process is difficult, but at least it allows you to say your goodbyes. Those who die suddenly, in an accident or a health issue, there is always the feeling of not having said how you feel or being able to express your feelings while they can still hear you.
As hard as it is, if you have her under hospice care, they generally have the person sedated and minimize their pain, unlike the treatments which are only designed to keep the body alive, not pain free. Watching death is not an easy thing, I watched my 15 month old son die from complications with leukemia, it was one of the hardest things I have ever had to do. But know she will be comforted by your presence if you choose to be by her side, and don't feel bad if for some reason you are not there when she doesn't take that last breath, as long as you left her know how much you care before she takes it.
Barnie2years
Level 8
May 24, 2019
2
Why does everyone think I'm not going to respect her wishes? I'm allowed to go somewhere away from my family and scream and tantrum and be upset and melt down without it being "against her wishes". My distress and pain is just as valid. I can let her make her decisions and follow through without being super happy and not complaining anywhere at all
@LadyAlyxandrea, could be the way you phrased it in your post.
@Barnie2years I struggle with that I guess. People always misunderstand my phrasings when I'm worked up.
I tried to say just this but missed the mark, thanks for your words.
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