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My AD sister just turned 59 and had a major seizure. She cannot eat or drink and was put into hospice care at our home. This is tearing my heart out. It has been 17 days without fluids and 19 days without food. I feel guilty sometimes for wondering why it is taking so long for her to pass. A moment later I am totally bereft from the knowledge that she will soon be gone from my life. Has anyone else gone through this?

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You feelings are understandable and normal. It is called grief. Please consider talking to the hospice personnel about your feelings and needs. They can recommend resources to help you in your area. Please also consider contacting an online grief group that can sympathize and give you practical advice. They have lived the experiences you now face and give the best advice.
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SusanFeig: I am so sorry for the loss of your sister and send deepest condolences. May you hold the memories of Pam close to your heart.
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Thank you to everyone who has posted in response to my pain-filled question. My sister passed away in the early morning hours yesterday. I know she waited until everyone who wanted to say goodbye was able to do so. I miss her terribly but I know that she is at peace and back with my Mom and Dad. As one of my sons so beautifully said, "Auntie Pam may have lost her memory, but our memories of her will go on into the future." Wishing all of you a peaceful experience with your LO.
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Awful for everyone. Hopefully she is feeling no pain.
Prayers.
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A couple of years a part my parents received hospice care at home. About 24 hours before their death they were sent by an attendant to a hospital and facility to pass. I stayed by my mother and father's bedside, moistening their lips and mouth with a sponge swab from time to time until about 1 and 2 AM. At each occasion a nurse suggested that I go home to sleep. She said that they could still hear and if you can believe it wouldn't go unless I did, she said that sometimes people won't die unless they are alone. Before I left I told them how I appreciated all the good things they had done for the family and listed a few sunshiny times we enjoyed at the beach, park and mountains. A couple of hours Iater I received a phone call that they had passed.
My best friend (49) also took hospice care at her mom's home for a couple of weeks, I went to see her everyday in the afternoon. One morning her mom called saying that she was about to go. I ran over and she was panting and seemed to be fighting to stay. I whispered in her ear that I'd keep to my promise to watch out for her mom (Two weeks prior, we broke out laughing about that the instant she uttered that request because we both knew it would be a little nuts for me with my AD husband. Five yrs later, it's been great). I also whispered that she's got to be the one to come back for me when my time comes because I wouldn't trust anyone else. I told her I loved her and our friendship and told her to go.
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dseag2 Oct 2021
My mother has been in hospice for over a year and is now bedridden and in the transition phase. She wasn't eating and barely drinking water but is now eating small bites of food and drinking Ensure, even though she is on constant pain meds. She is a fighter.

I visit twice weekly because it is a distance, and I know she is under great care in AL. Every time I visit there are typically 2 nurses in her room overseeing her. One of them sings to her. The last time I visited I told her how much I loved her and how much I appreciated her teaching me how to be successful in my career and my life.
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She must have an amazing life force to go for so many days without fluids. Try to be positive and loving in these last days. Let nature take its course with calmness and peacefulness. Seek grief counseling during this period if you need it. Also take care of yourself. All the best to you.
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I’m sorry your family is going through this; it’s so tough to watch a LO as they’re ending their journey. I’d encourage you to tell your sister everything you need to tell her. This should include the fact that the rest of you will be ok and look out for each other. Tell her that soon she’ll be in the company of angels and past friends who are there to show her the way. Encourage her to go as she’ll be in full light in a place of more love than she can even fathom! She needn’t be afraid. You need to know that none of us die alone- someone always comes and shows us the way. It’s a beautiful thing, really. You love your sister & don’t want her to suffer. She doesn’t need food or water while she’s transitioning. She’s preparing herself on a spiritual level. God bless you for being there. There will be time to grieve later. For now say what should be said- even if she’s unconscious. Her time is very near. God bless you and your family.🙏
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I'm so sorry. First, your sister is so young so I can imagine this is especially tough for you. You are obviously a good, caring sister.

My 89 year-old mother has been on this rollercoaster for almost a month. She went into hospice transition (end of life) on September 28, when AL thought she wouldn't make it through the night. She has been bedridden ever since. She has only been drinking Ensure and water for weeks, but today I was told she ate part of a waffle. It was so depressing to hear her say she was in pain so I had them administer medication and called hospice to see if she could be on a drip.

She is weak and declining but still remains relatively lucid. After seeing her for the first time in this phase I honestly thought it would only be a matter of days before she passed but after almost a month I'm thinking it could be weeks or even months. Like you, I want to see her out of her misery but the body seems to give up when it is ready.

You have my sympathies.
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MJ1929 Oct 2021
My mother was on hospice for nearly eight months and lived exclusively on Ensure that entire time. She could go on for a while.

A warning, though -- Ensure has a ton of sugar in it, and my mom actually developed terrible gout in her hands from it. Make sure the hospice people watch that and consider giving her the lower sugar version.
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Yes it is a very emotional rollercoaster that you're on. It's one you'll be off soon, but then you will be on the rollercoaster of grief, so just because you get off one rollercoaster, doesn't mean that you won't get on another.

My husband was under hospice care for the last 22 months of his life in our home, and there were several times over that period that I was told the end was near, and so I would try and ready myself best I could, only for him to continue to beat the odds.
When once again I was told on Aug.5th of last year that he would be dead in 3 days, I in fact knew that this time he actually was going to die, but had no idea that his 3 days would turn into 41 days,(he died on Sept. 14th) all of which were without food, and about 25 of them without drink. It was very hard to witness his long dying process, but I was also very thankful that I was able to honor his wish to be able to die at home, which he did.

I'm so sorry that you are having to go through this with your sister and her being at such a young age, but just know that God will be with you every step of the way. And that is my prayer for you, that you feel His presence, and that He gives you the strength to carry on for the sister you love so. May God bless you and keep you.
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SusanFeig Oct 2021
Thank you for your compassionate words. I am praying for the strength to let her go. I know her soul can't pass until my soul is at peace.
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Watching my dad pass away in his home while on hospice care is both something I’m bothered by and feel grateful to have been involved with. It’s a privilege to honor a loved one by seeing them out of this world, but also a huge emotional trial. Hold your sister’s hand, say anything you feel needs saying, and rest knowing you’ve done your best for her. I wish you both peace
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SusanFeig Oct 2021
That's exactly where I am right now...trying to find peace in what is happening. I know that she will be at peace as soon as I am.
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Always hard to watch someone die. It can be kind of bizarre how long a person can live when you think there is absolutely no way they can still be holding on. The human body is an amazing thing, no doubt about it.

Somehow try to accept this and hold her hand and send your love and positive vibes to her through your physical connection. Try to find peace and let her go. Sorry that your sister is leaving you at such a young age. I'm sure you are already starting the grieving process. I'm also sure that her time is very limited.

Sorry for your loss.
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I’m so sorry for what you are going through right now. Hospice has a chaplain, and a social worker that will work with you to answer questions and give you support.
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Everyone does.

I'm so sorry -- dying is a tough process to watch. Lean on the resources that hospice offers, because they're wonderful.
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