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Starvation at end of life with Primary Progressive MS

Hi,

My Mom has had PPMS since 1999, and is a quadriplegic. In the past year and a half her swallowing and breathing function has become more impaired. Her voice is a forced whisper, and she battled with aspiration pneumonia back in July which she has since recovered from.

A continuing challenge since she returned from the hospital, is to regain the weight she has lost. Her body has always been thin since she became a quadriplegic, with no muscle tissue and little fat, however now she is so thin that even with a special air mattress, all of the bony protrusions on her body have developed stage III - IV pressure ulcers that have worsened over 5 months despite careful maintenance from home care nurses.

The wound specialist tells us that she will not be able to heal unless she puts on weight so there is fat between her bones and the air mattress. The other day I spent 12 hours with her, feeding her every meal via straw and small amounts of soft foods via a spoon. Even with me pushing her she could only take in 1000 calories in the entire day (including 60 grams protein), which is still a 600 calorie deficit to maintain even an 80 pound body.

My Mom would like to live, and we have recently become aware of TPN, or parental nutrition where they put a PIC line into your chest and put nutrients directly into your bloodstream. But it will be two weeks until the doctors have a conference call to discuss this possibility.

In the meantime, I have asked my Dad to provide her PSW's with two bottles of Ensure protein drink to feed her along with every meal, but he balked at that amount of food. He said "that seems like a lot of work and food, just to add 3 or 4 pounds of weight". But three of four pounds of weight could mean EVERYTHING at this point.

I know that he is exhausted and overwhelmed, and has long since lost his sense of urgency for any emergency situations (he never really did have any, even before she got sick), but this could really mean the difference between her life and death.

She is only 62, but essentially now looks like the woman who died of MS, whose family shared photos of her when she was near death: Floria Lormier dailymail.co.uk/health/arti...

Perhaps her quality is reduced horribly, and I should just allow this to happen? Perhaps the TPN nutrition and weight gain would only drag out the healing of the wounds for additional months or years, and cause additional suffering? Should I sound the alarm bells that my Dad is refusing to try to feed her enough to get well?

Andrea

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An extremely delicate, personal and emotional topic, and one that I was speaking about today with a dear friend who is 92. She became a supporter of Compassion and Choices in honor of (me) for my firm belief in a peaceful, supported transition in a comfortable and loving environment.

While my Dear Beloved Angel of a Mother may not have been in the exact place as Floria, Mommy died a horrific death from MS as well. It would have been a blessing to know that she didn't have to suffer any more- and so many in that position are unable to make their own decision by that point. So many hang on for loved ones, feeling that they need to be there in some way...

Having a Chronic Illness that becomes unbearable, and filled with pain, is literal torture in every sense of the word. I have seen, and personally experienced such suffering and torture that I would like to be able to make that choice when I am ready.

So many others I have known, shared with on forums, read about, been connected to in some way/diagnosis have chosen to take their own life to end the pain. I empathize.

I certainly can't share what may be the blessing for your family, however, I know if it was me, and I was at that stage, I would be ready to pass with any smile I could momentarily muster, and a "see you real soon"...

Have to stop now, crying for Mommy...

Love

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Both MS and Ulcer are on Death Certificate...

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Oh! Cynthia. :( I just feel like.. up until now.. Mom was like "I dont want to be revived, I dont want a ventilator, I don't want a feeding tube". So that was the basis we were proceeding on. But we never anticipated these ulcers becoming such a daily battle.

And up until now, I have been living by the philosophy of "whatever Mom wants, I will help her and be her advocate".

In the summer she said to me quite nonchalantly "I'm not afraid to die" when she was still wheezing with pneumonia.. which I couldn't understand but was grateful for because I secretly feared that she was.

She seems to still want to live, and fight now.. so I feel like, it is my duty to help. So far I have been helping.. I try to keep my Dad in check, and I lit the fire to get the doctors to discuss the TPN.. but of course it will all take forever to organize, if it is even possible.

I feel like I am failing her. Maybe I will go and talk to her about this tomorrow, and see what she has to say.

Thank you for replying. I am sorry for your loss. <3

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My heart goes out to you... in every way. I understand and have pure compassion for your every thought, emotion, pondering, questioning... you are not alone, in any way. And, while it may not feel like it at the moment, you are not failing her. I will share, however, that this one is not an easy one to navigate...

Feeling...

Trust how you feel, honor the space, the precious gift of being together, the blessing to share and... the silence together... the very hard part of taking a moment to "pause" emotionally and allow Mom all the time she may require to reflect (if she wishes to, and can) again on the various emotions felt over the journey, her thoughts of perhaps not wanting to fight- or to stay- "I dont want to be revived, I dont want a ventilator, I don't want a feeding tube"...."I'm not afraid to die"

And...how they may have shifted to, perhaps, wanting to fight...

I noted that you mention: She seems to still want to live, and fight now.. That is key... "she seems"- however- Do we really know? Are we ok with any answer?

I saw the same in my Mother- Most Mama's will do anything to be strong for their children. Even be tortured... I did, for my furry children. They, indeed, are my children.

One thing I always remembered over the years, and I am sure we have all heard it spoken in some beautiful, eloquent way... is that it's always so important to let those that are suffering and at a stage similar to this- to let them know that we are ok, everything is ok and will be, so and so is going to be just fine, we will see you soon- etc. extensions of your relationship/personal beliefs/religions etc. Providing a peaceful, loving, no stress space where everyone is supportive, and going to be just fine... without getting into details, specifics, etc. General.

I hope this makes a bit of sense. I am sorry I couldn't be more articulate today.

I trust and pray this will guide both of you towards a healing in this area- whatever that may look like at that moment. Knowing that emotional healing, too, is a process, will ebb and flow... and take time, maybe even the rest of this lifetime... I honor wherever she may be.

I have to believe that I will see my Mom again, or I simply couldn't go on.

I didn't have the blessing you do. I was unable to care for my Mother due to my own illness. Worst pain in this life.

You are OK, everything is going to be OK. Today, tomorrow, and forever...

Prayers for tomorrow.

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Hidden... I just wanted to say it’s tough to write about this topic so I admire your ability to do so in such a beautifully expressive way.

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What a beautiful, thoughtful reply Cynthia1111.

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Lynn108 first of all I am so, so sorry at what your Mum is having to endure, but secondly, what a fighter. I have struggled all night with how to reply, as I am nearly 62 with PPMS. As a few of us on here, know ms is cruel, to actually read a testimony like yours is soul searching. Hidden replied so beautifully to you, I will not even attempt to try. Just know that I am praying for your Mum, yourself and your Dad, may Gods will be done, blessings Jimeka 🦋 🤗 💐For your mum x

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Dear Andrea Lynn108

I'm so very sorry for the suffering you and your mom are enduring.

It sounds like your mom wants to live. I would respect her wishes and do all that you can to help her achieve that goal. Hopefully she is able to have some quality to her life.

Recently, my father told us he was Willing to suffer the effects of palliative chemo as long as he could awaken each day and see my mothers face. I knew the chemo would likely hasten his death and decrease his quality of life but it was not my decision to make. Unfortunately, my father wasn't the only one to suffer. Watching a loved one die a horrible death is suffering for those who love them too.

I take solace in the fact that I contacted hospice and helped him die more peacefully in the last 2 days of his existence. I'm fairly certain that getting hospice on board earlier would have lessened his and our suffering in his weeks of struggling to cling to hope. But destroying his hope would have also been wrong.

Respect your mothers wishes. Engage the resources needed to help her with nutrition. Discuss the TPN delays with her physicians.

My heart goes out to you for the pain this situation is causing you. 💔

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My aunt had PPMS ever since I was born. I first remember her wearing braces to walk. By the end of her life she couldn’t hold her head up any more and couldn’t swallow. The last year and a half, she let it be known that she was ready to go. Pneumonia, I guess, was the answer to her prayers. Good luck Lynn108! Your mom sounds like a fighter! 🙏

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Lynn108 , I know that this is very hard. My husband and I cared for my mother in the last months of her life and my father was less than supportive. It took me a while to realize that he cared but that he was having a problem with watching the woman that he had loved, since they were both 16 years old, suffer. It sounds as though your mother can still understand and make her own decisions so discuss the positives and negatives of the TPN with her and let her know (as others have said) that you will be OK with her decision.

Does she have a living will or power of attorney? You can get a living will form from most hospitals (every time my handicapped daughter goes in with pneumonia they give me one before I can tell them that she already has one) and you can discuss the options on it with her. If she cannot sign she may be able to make a mark and then you and at least one other person can witness it. If she sees her doctor any time soon you can discuss this with him. These are not fun things to deal with but can make things a bit easier on you because you will know that the decision was hers and she made it.

My heart and thoughts are with you.

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My prayers are with you and your family.🙏🙏🙏🙏 Ken

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My prayers and thoughts are with you and ur family xxxx

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Lynn108 I share the thoughts of those who have so eloquently spoken. You are a brave and loving daughter who wants what is best for your mother. I cared for both of my parents until their deaths. It is so very difficult and we can only do the best we can. Fortunately, our best is always good enough and there should be no regrets when it is time for our loved ones to leave us. Prayers will be put forth for your mom, dad and YOU🙏🏻

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@Lynn108 I think everyone has answered you very well. I don't know what I can add except that when my mother-in-law was dying of cancer she kept fighting for us because she thought that is what we wanted. I told her we would be fine and I would support whatever she decided. It was hard to let go but she was tried of fighting and needed to hear from us that it was ok to let go. Talk to her and let it be her decision. We will pray for you that your are given the answer.

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I am so sorry. They put a feeding tube into my dad’s stomach? as he lost so much weight but he could not take enough even of that and he finally succombed. I hope for you, that you have better success. My dad was not diagnosed with MS I believe he had it. I remember that he also lost sight in one eye, just as quickly as I did, and he mentioned several things that I had trouble with. He has been gone over 20 years. I was wondering, if you could add corn syrup to her regimen. I know I once read an article about scientists doing tests on rats and they used corn syrup to get the rats to take the test material. The rats started getting gat on the corn syrup. This started the debate of the corn syrup not being good for people and causing obesity.

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