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My 68 year old father fell and broke his hip last Wednesday. He had a partial replacement the day after. He suffers from Lewy Body Dementia, Parkinsons and Celiac disease. He is 6.2 and was maybe 125 lbs when he fell. His overall health has been declining this past year and has lost weight within the last few months. The day after surgery they got him to eat and he seemed very groggy and confused due to the anesthesia. The next 2 days he seemed more confused and agitated. They ended up putting him on a dysphagia diet because he was having a hard time swallowing. He has had issues with this for awhile. He has always been an extremely picky eater but the LBD has made it worse the last year. Over the last few days he has refused much of anything. A few bites of pudding here, a few bites of ice cream there. He flat out refused mashed potatoes, applesauce etc. I spoke to his doctor and she asked "how aggressive" we want to be with him. He has been extremely agitated and yelling alot. As hard as it is for me, I made the decision to put him into hospice care. Per his living will, he does not want to be kept alive per artificial means. His doctor basically said his body is in feed me mode and his nutrient level (not sure what it's called) is 2.2. I feel lost. I don't want my Dad to die but he is refusing to eat himself. He has not been up out of the bed since the fall. He refuses everything and fights with everyone and says he can't do it. He is cognizant at times and then other times he's yelling stuff that doesn't make since. I don't want to live with regret when it comes to putting him hospice but even when we did my Dad's documents he said he didn't want artificial means of being kept alive. To me a feeding tube would be considered artificial and his living will States he doesn't want hydration or nutrients. He says he's hungry but refuses to eat much. He also failed 2 swallow tests and is coughing alot after eating or drinking anything. I would just like some reassurance I'm doing the right thing. His LBD wasn't terrible. He knows who we are etc he just wasn't able to live alone anymore. His doctor said rehab was not an option for him. He was also seeing psych in the hospital and they tried different meds to help manage his aggression but they were not working.

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I understand, and your grieving is valid. Your guilt is not.
When a person refuses to eat, they are deciding to die. They are ready. Respect that he had a living will and he wanted this, even though the process of the dying is hard to see.
Allow yourself time to grieve, but do not let guilt feelings get in with it.
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It is obvious from your original post that you love your father, and the decisions you made for him were made from love. That means that you did everything exactly right.

That his passing was difficult is what is troubling you right now, and second-guessing what else you could have done, but each decision you made, you believed to be the best one at that time. You did an excellent job of loving your dad. That is very clear.

I'm so sorry you're missing your dad now, but eventually, you'll remember less about his final difficult days and will remember the things about him that made you love him so much. Peace to you.
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Salass, I'm so sorry for your loss. You shouldn't feel guilt, far from it - I hope eventually you'll be glad to have been there in his corner right through to the end. May he be at peace.
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Dear Salass, You did all the right things. I am happy you were able to be with your father as he passed. Happy sounds wrong to say, but I hope you know what I meant. I was able to hold both my mother and father as they passed from this earth and their pain. I believe I will see them again, and I hope you get some comfort from that thought.
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Salass,
So sorry for your loss and the difficult passing of your father.
You were doing all the right things available to help him, including hospice.
It is unfortunate that he can no longer be with you.

You said he went to be with God this morning. That can bring you comfort in times you are missing him. Right now, you could be in shock, after all that has happened medically, but there is no guilt to be had.
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salass34: I am so terribly sorry to read your update about your father's passing. Deepest condolences sent to you, dear salass. As you go through the grieving process, take care of yourself. Love ad hugs.
Love,
Llamalover47
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Thank you everyone for your answers and prayers. My Dad went to be with God this morning at 250am. I'm grateful he is no longer suffering but part of me still feels guilty.
I was by his side when he took his last few breaths. This is the HARDEST thing I have ever had to do .
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Isthisrealyreal Jan 2022
Great big warm hug! You have nothing to feel guilty about but, we feel how we feel.

Please be kind to yourself as you process the grief of losing your dad to such terrible diseases.
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Put him in hospice and let his time left be as comfortable as possible. I would not recommend a feeding tube as that comes with it's own risks. The bottom line is that you are carrying out his wishes, and for that you should not have any regrets.
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I think it was smart to put your dad in hospice. He has been specific in his wishes. Deciding to put my brother into hospice was one of the hardest decisions I've ever had to make--there's such finality in it--but it was the best for sure. I think it calmed him down. With you it's, is this the time for it? Consider that it's only going to get worse. Your dad doesn't sound like a candidate for rehab with his poor thinking and fighting. His poor thinking may be why he goes back and forth on eating. Eating is such a primal activity that it's extremely distressing to watch someone refuse to eat. A feeding tube would be the nutrition your dad doesn't want, and it can create problems with aspiration, which can cause pneumonia.

They will use meds to keep him comfortable but not treat the disease process. For example my brother has a brain tumor and gets anti-seizure meds to prevent agitation--so he's more comfortable. Your dad has a lot going against him, that's for sure. But I would take comfort in knowing you are honoring your dad's wishes. You are thinking through everything with his wishes in mind, not yours. You are so fortunate that he told you what he wanted, so many people don't. If you haven't placed him in a hospice yet, check out the Medicare website. They rate them, not by stars but percentages of many criteria. Find one that is better than the national average. Good luck!
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People get confused about hospice as if they are “pulling the plug” on their loved one and they feel guilty. Your father needs the palliative care hospice offers and make him comfortable sooner than later. Time to recognize he is ready.
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Let go and Let God.............your father doesn't need to stay and suffer any longer. Any doubts can be discussed with the doctor as he/she knows the outcomes of all your father's issues. Be merciful.
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So sorry you are going through this! My late husband died 10 months ago at 94, difficulty swallowing, coughing when trying to swallow, at the end. The RN who was assigned his home care case (he died at home) told me that at the end a sign is that the patients don't/won't/can't eat much or at all. He also was pleasant at home and combative in rehab. Blessings and prayers to you and your family. It sounds to me as if you've done all you can do and acceptance is very difficult, letting go is very hard - I know all too well.
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Hi Salass, My father had Parkinson's, which lead to dementia. Although my father was much older than your father when he came to the critical point in his care, I can tell you that I elected for hospice care during the last several months of his life. He too began to refuse food, taking only small bits, then slowly refusing food. I elected not to have a feeding tube placed. Why this decision? To what end would the tube be helpful? After careful consideration, we refused feeding. It was very, very tough to watch as he literally withered away, but when someone reaches the point your father had, consider hospice a mercy. May you weather this as well as can be expected. Know that whatever decision you make, it will be the right one for you and your loved one. Hugs and kindness to you.
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I think it comes down to whether you think that your dad would be ok with starving his body and that being the reason his death when it's preventable. And of course he may quickly decline no matter what decision you make. But the way I see it, food is a basic need for the body and not a medical intervention.

My dad was in his late 70s, very, very ill from sepsis, and had dysphagia and aspiration concerns when a G-tube was put in. He had very little QOL for years before that and even less since that happened. But after 6 months, the G-tube was removed, he regained ability to swallow through therapy, and that was 8 years ago. My dad also flat out refused any DNR measures so I didn't have to consider alternatives. If your dad's living will says "no hydration/nutrients," then I guess you have your answer for your situation. I still think starving the body is not the right way for anyone to go, unless they are in active decline in the weeks before death.
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Can you consult with a religious advisor, with someone you know or even someone your father knew?

In my opinion, a feeding tube used as a TEMPORARY measure to strengthen a person to recover to a better baseline is NOT the same as “keeping someone alive by artificial means.”

We all know the scary scenario where someone is kept alive permanently attached to machines with breathing and feeding tubes- but helping your dad gain nourishment while he is temporarily unable to ingest sufficient nutrients due to low appetite and trouble swallowing-is not the same.

Again, my humble opinion.

Blessings.
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Daughterof1930 Jan 2022
When you say temporary please know that temporary isn’t so easy. My mother had a feeding tube placed on the advice that there was great hope of recovery. Sadly, the recovery never came but the tube remained. There was no one with the desire to cut it off, honestly who wants to watch anyone starve? It’s a very tricky matter to discern when a person may recover and no longer need it and when it becomes life extending of a life devoid of all joy
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Dear Salass34, so sorry for this difficult time in your and your Dad's life. We went through this with my mom from mid-October when she basically stopped eating to early December when she passed. I had a much harder time accepting the hospice framework and her living will-no extraordinary measures-like your Dad's-which I found out included the feeding tube issue. When I visited my Mom I thought I could be a super-hero and get her to take Ensure-made me feel better for a day-but quickly it was clear she wasn't going to do that either. It is just very very hard to let them and God (or whatever Higher Power you believe in) do the decisionmaking when we think we can override it-which we can't. It has taken me a while to be at peace with what happened but ultimately we have to get to that place.
Sending lots of wishes of support to you-been there, done that very recently. Hard to go through but we have to let go of our wishes we could control the end.
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It sounds like Hospice is the right choice for your Father. They will help you understand the dying process and keep him as comfortable as possible. You are definitely doing all the right things for him. Prayers and love coming your way.
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Refusing food is normal when our bodies are slowing down and ready to die. Forcing food can cause considerable pain. Hopefully, hospice will enlighten you on the natural process.
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Hospice is meant to make the person comfortable with the time they have left.
They usually evaluate every 6 months and that is what they did with my Mom, they kept re-enrolling her because she was on Hospice for 1 and 1/2 Years.
Hospice also does counseling for you and the family if you need it.... they recognize that it is a stressful time and there are a lot of emotions.
I would suggest softly that maybe you talk to them about it... they can reassure family members and make sure that they are taking care of your loved one in the manner everyone is comfortable with.
Having LBD can be very confusing for the person who has it... unlike other Alztheimier's they are aware that they have it and they get very frustrated at the smallest things.
It sounds to me like you have made the right decision considering your Dad's condition.
Sometimes a person refuses to eat because they want to die, as harsh as that sounds. I have seen it many times. They either lose the will to live or they just don't want to be here anymore.
It could be too that your Dad doesn't have an interest in food because of his swallowing issues it is hard for him to eat and so he just chooses not too.
I think when you get to the Hospice stage there is a sense on the family that they must prepare for what comes next... come to a peaceful place within yourself that your Dad has made his wishes known and your job is to just respect that, even though it is hard.
I remember telling my Mom, " I don't agree with what you are doing, but I will support you and your decision". It was hard for me to say to her.
Like I said, please reach out to the Hospice staff for guidance through this time and they are there for your loved one and the family....
God Bless.
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Medications with LBD can be tricky. So it is good they are searching and trying the right meds. Many meds that are normally given can be fatal for LBD.

It may take him a while to get over the anesthesia, he may not get back to where he was previously though.

I am wondering though why the doctor said rehab was not an option. While he is on Hospice he can not be in rehab though. IF he were not on Hospice would rehab be an option?
Rehab for someone with any dementia is difficult and for someone with Parkinson's it is more difficult. That may have been the doctors reasoning.

You are doing the right thing. Hospice will help you and your dad as well as the rest of the family. You are following his wishes. As hard as it is it is out of respect for him that you do so.

Where will he go when he is due to be discharged from the hospital? Will he go to a Skilled Nursing facility or home? You say he can not live alone any longer.
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Salass, I am so sorry that you are losing your dad so young. It is never easy to experience this loss.

God bless him for making his wishes known and taking all of that burden off of you. That is one of the greatest gifts we can give to our loved ones. He did well, be sure and tell him.

May The Lord give you strength, peace and comfort during this difficult time. May HE help your dad pass peacefully and be with him.

He is very blessed to have a daughter that is willing to honor his desires for his end of life. God bless you!
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Speak to his doctor about the aggression, and work with her until you find a medication that works. It may take several tries and this is a process of elimination. Regarding the eating, will he take products like Ensure, which are balanced meals in liquid form, or milk shakes? Feed him whatever he'll take (ice cream, pudding). Feeding tubes are artificial means of feeding. Some people lose the ability to feed themselves and need to be fed. All the best to you both and a big hug!
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Isthisrealyreal Jan 2022
Nancy, dad chokes when he eats or drinks. Ensure isn't going to change that.
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Hospice is the right choice. They will not force anything.
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If your father is Hospice eligible, it's not a horrible thing to have him in Hospice care. Hospice does not kill the patient. It should help supervise his medications and his condition. Hospice should also be helping your father have as good a quality of life as possible, so might offer some useful feeding strategies. If his condition improves and Hospice no longer seems appropriate, you can sign out of Hospice care and go back to his regular medical supervision.
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Another thought for anyone reading this...
When preparing a living will it is important to really have a deep conversation. If someone says they don't want artificial means to sustain their life, ask how they feel about those means on a temporary basis. If there is a decent chance for recovery, a temporary feeding tube or ventilator or other method may be acceptable to them. It's an important discussion to have. And a tough one.
Sadly, Salass, from your post it doesn't appear your father has a decent chance of recovery. Follow his wishes and don't have regrets. You are a wonderful daughter!
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Salas, I am so sorry you ate going through this trial. Your father, at age 68, is still quite young to be in such decline. That's likely making your decisions even harder. But your father already made these decisions. He prepared a living will that states his choice not to be kept alive through artificial means. In my opinion, that is your answer, as hard as it is to accept.
Hospice has changed and isn't an indicator that a patient is about to die. They will make sure your father is clean and comfortable. And they will be available to help you as well. Hospice staff know very well the stress and second-guessing a family member goes through when they finally decide to bring them on board. They can help you.
In your post you mentioned your father has LBD and Parkinson's. He has been failing for a while. And on some level he seems to know that.
You said you did not want to regret your decision down the road. Remember, it was HIS decision, not yours. As a loving daughter you have taken the actions HE wanted. There is nothing here to regret.
Best of luck to you.
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Isthisrealyreal Jan 2022
Exactly. He knew what was coming with his diagnosis and made his decisions so nobody else had too.
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6'2" and 125 lbs gives him a BMI of 16, which is severely underweight, and that was before he was hospitalised. The OP also states that her father has been having difficulties with swallowing for a long time, prior to the fall; plus he's celiac, which creates problems with absorbing nutrients; plus there are the Parkinson's and the LBD to take into account, both of which could be responsible for problems with appetite, swallowing and just mechanically being able to eat. Poor man.

Her issue is whether to consent to artificial feeding on his behalf. Her father has given directions that he is not to be kept alive by artificial means; but before she therefore rules it out she should also ask whether artificial nutrition in the short-term, with a view to reversing a PEG in due course (which certainly can be done), could reasonably be expected to deliver a major and potentially lasting improvement in his physical condition and his quality of life. If so, this becomes not about "keeping him alive," but about offering him appropriate treatment.

So I'd ask. If the chances aren't good enough she can still decide against it.
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RedVanAnnie Jan 2022
Were you a nurse or in the medicalfield? You have some helpful ideas.
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It is hard to see your family member struggling. Artificial means can be anything inserted into the body or can be anything permanently placed into the body - that would include joint replacements. I tend to go the direction of "anything permanent that keeps the body alive" (ventilators, mechanical assist devices for the heart...). A feeding tube can be small - like a piece of spaghetti - and can easily give him nutrition and hydration and medications. Without one, he will get all his medications either through an IV or injected into his muscles. If the goal is to have hospice, then the goal is to keep him comfortable. I would suggest a PICC line - a type of long-term IV that is comfortable for your father and helpful for the staff. I would also suggest a Dobhoff feeding tube which is not permanent and also comfortable for him. Without nutrition, he will live maybe a week or 2. Without hydration, he will not live a week.
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Isthisrealyreal Jan 2022
All of us mean kept alive artificially, not joint replacement. That is so far from what EOL documents cover it's funny.
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I found I was super angry when I was out of it in the hospital. I have a degenerative situation that eventually will be at the stage where you are. I would like to point out even in my altered state if I said I was hungry, I was hungry. I had a feeding tube and the coldness of the liquid made me puke the liquid from the tube so at one point I was not doing good. It's a fine line between not being able to eat and refusing food. If a patient declines food, time is near for life to be over or major nausea which can be controlled.
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I am sorry this is happening. Sounds like you are doing everything a loving child can do. If he doesn't want to eat don't force him. Have his favorites available. I don't know if you are Christian but prayer can bring you peace with the situation. When my mom quit eating it was time to get loved ones together to say their goodbyes and make peace, even though she didn't always know who we were. She finally got to go home with her parents.
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Bunny567 Jan 2022
I agree. In my experience when a loved one has reached the stage that they no longer want food, it's because the systems of the body are shutting down and they can no longer orocess food.
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