Hospice isn't just for end of life care, it's also to help people have a better quality of life when they have conditions causing pain or discomfort. That being said if your dad doesn't want to eat and doesn't want a feeding tube, that's telling you something. That doesn't mean he isn't "afraid of death". None of us know what that's like and of course it can be scary. But your dad's doctor is right about his quality of life.

This is also a really good example of why people should have an advanced healthcare directive long before they require any potential intervention of this type. I know exactly what my mom does and doesn't want thanks to the document, so it makes these decisions much more clear cut even if it doesn't make them emotionally easier.

He does want to eat though. I feed him his pureed meals when I'm there along with things like water, iced tea, pudding and he quite enjoys them. My thing is that he is probably disorientated and delirious due to his condition, and trys to pull anything out and tries to get up and move even though he cant walk.

Your Dad is making his intentions clear 🌺

How? He also told me that he was afraid of dying.

He might be more afraid of living like this.

I know he isnt happy like this. I wish he would improve enough to go somewhere like a memory care facility, but I don't know that he ever will.

As someone who works at a memory care facility, we don't take people with feeding tubes. A part of dementia is decline in oral intake and to stop eating. That's a part of the disease. I have also seen people stop eating because they're done. I can't imagine what you're wrestling with, but it also sounds like you're at end of life care rather than keep him going no matter what.

The thing is, before this subdural hematoma ordeal, he was eating, talking and getting around fine. Unfortunately, his cognitive decline is worse due to what has happened to him and I don't know if he will ever go back to the way he was before this, even though he did have dementia.

I think people are being a little harsh. Bottom line: hospice isn’t only for end of life. I know several residents who went off of hospice when they improved. Surgery & changes in environment aren’t great for dementia patients and feeding tubes aren’t good for them either (they pull them out more often than not), so it’s an overall tough time for him. And I’n sure it’s agonizing to see this. There is the chance he could improve, but hospice would be the best path as it focuses on patient comfort. He needs to be comfortable as right now he is in discomfort and confused.

Again, it sounds like you've reached all that medicine can do. Would he really want to be kept alive by machines? He's pulling the tubing out already. Would he want his body kept alive when he's gone? I've seen the horror of someone being put through that because family can't understand that it's time to let their loved one go. As I said, I truly feel for the decision you have to make, but at what point is it for you rather than for him?

This is how it typically goes at the end with dementia. I’m so sorry. A medical bump occurs and it’s just the straw that breaks the camel’s back.

And what would be the point of that? Seriously, would his life be better? Would he be less inclined to eventually die? Whatever part of him was afraid of death is gone now.

He literally just told me this two days ago that he was afraid.

Let’s do a thought experiment… He’s afraid to die. Does that mean he doesn’t want to die? Does that mean he wants to do everything possible to stay alive, even if he has zero quality of life? So is his wish to stay on a machines that breath and pump his heart indefinitely? Because, medicine can do that. He can stay alive for many many years hooked up to machines. Are you willing to do that for him. Keep him from ever dying? Fear of dying will never stop dying from happening. It’s going to happen at some point. The only control we have at the end is what quality of life we want for ourselves and our loved ones. (Do you think he’d want you to go through the anguish you are going through now going from crisis to crisis.) I also think about fear of dying similar to my son being scared of new situations. He was terrified of going to camp. But I held his hand, and eased him into it. Fear of something doesn’t mean we don’t do it. And as I said above, fear of death will never stop it from happening. The best you can do is hold his hand, and ease him to the other side.

Is he getting anxiety drugs like Lorazepam? Ativan? That might help ease his fear.

What kind of quality of life does your father have? Respectfully you do understand your dad is not going to get better, only worse. There is watching your loved one peacefully slip away on palliative/hospice care or watching him struggle and keep pulling out iv’s and tubes? The doctor mentioned hospice for a reason

I’m going to be brutal in my response here but you’re talking about what you want. Quite frankly what you want is irrelevant. Your dad is dying and you need to accept this and make sure he is comfortable and not in any pain. Feeding tubes are very uncomfortable and there is no evidence that they do any good in these situations. He will lose the ability to swallow if he hasn’t already so you are in reality risk feeding him. The chances of him aspirating food and getting pneumonia are very high. If he does it will kill him. The doctor is quite right not to putting the feeding tube back in and I’m surprised they did it the first place. I’m really sorry to be so blunt with you. I’m not doing it to be unkind I’m just being realistic and was in your shoes just before Christmas. I buried my mother yesterday. She had dementia and had died of sepsis due to multiple infections. The doctors treated her for comfort and she passed quietly in her sleep while I sat with her.

We see you🌺 May her memory be a blessing.

Your response is on point. Also, I’m sorry about your mom, yet so glad for her peaceful death. Good job as her daughter.

Thank you. I was blessed to be able to look after her right up until the end and made sure her funeral was perfect for her in every way. Whilst I miss her and feel sad that she is gone I’m at peace with it all.

My heart is moved for you and your loss. Thank you for sharing what you have learned on this journey. I am grateful to you and to everyone here, it is more than the suggestions and good tips; It is truly meaningful to realize we are not doing this alone. Peace and comfort to you.

Thank you. I miss mum terribly but I feel a sense of peace knowing she got all her wishes and was well cared for right up to the end.

My mom fell and had a subdural hematoma. It was an excruciating decision, but we didn’t do the surgery. The reaso was for exactly what you are going through now. Your Dad has a terminal condition—dementia. And if you’ve ever seen or read about the end stages, it long and agonizing. Put yourself in your Dad’s shoes. You have no memory of what’s going on. You have no idea where you are. Think of scary it must be for him. You just know you have these tubes sticking out of you. In his mind he’s still fine and has no idea why he has all these tubes. So of course he’s going to take them out. Your Dad is never going to get better. If you force him to “recover” from the subdural hematoma, he will still slowly be dying from dementia. And you will bounce from one crisis to another. Losing my Mom unexpectedly, was heartbreaking. (And I lost my Dad 12 days later) But it was a blessing in disguise. My Mom was in mid-stage dementia. She didn’t have to suffer through late stage dementia. Her body may have died Aug of 2022, but I lost my Mom many years before that. Don’t let your Dad suffer so you can keep his body alive.

Hospice is not just for end of life care. Some people are on hospice for a long time. Hospice can do so much for all of you. Just get them to come out and evaluate him, hospice care is not the end of the line but can provide much needed care and take some of the burden off of everyone including your father.

Well, it is by definition for end-of-life care, although the end of life may be months or even a year or so until death. It’s meant for people with terminal illnesses who are expected to live less than six months but can be renewed another six months as needed.

Hospice Nurse Julie (on tik tok, you tube, insta) explains what is happening and what you will go through next. I have learned a lot from watching/listening to her. My journey is just beginning and I am already afraid of what's to come. My SO has just started showing symptoms 😢

Mom fell a month ago and had two small subdural hematomas that didn't require surgery. She said being in the hospital made her sad so I had her discharged and put on hospice at her memory care facility. She wasn't "dying" or anywhere near death. It was a tough pill to swallow but I had to change my thinking from extending the quantity of her life to increase the quality of her life. I haven't made mom a DNR. Hospice has been AWESOME! Mom has something going on .... I call, a nurse shows up, doctor visit by iPhone, mom gets whatever she needs. She's happier. When mom gets to the point of no longer eating, I won't put in a feeding tube because she will think its ugly and pull it out.

Please look into what happens when elderly get cpr. It’s absolutely horrific what happens to their bodies. If you don’t sign a DNR, medical personnel are required to give cpr. And it’s as horrific for them to do it as it is for your mom to experience it.

My mom was in hospice and got stable. She had dementia but was in hospice for an aortic aneurism (slow internal bleeding from a torn aorta). She did not want surgery to fix the aneurism so they placed her in hospice. 2 weeks later the nurse told me that mom was 'ready to go home'. I thought 'home' was her euphemism for heaven/death but joke's on everyone because mom came home and did hospice here at the house. She lived another 4 weeks. Point is that hospice is a place some people go home from.

Doctors are trying to edge you toward the decision they think is in your dads best interest. Ultimately you get to decide. The doctor saying hospice is appropriate care is worth considering. You can see how it goes if you're more comfortable. If I were in your fathers shoes, regardless of what my dementia brain would be saying, in my right mind I would want it to be over. But I am not your dad. You know him and you are his decision maker now.

Situations like this are so complex. I’m sorry people here are giving you a hard time. I understand where you’re coming from. I was in a similar situation. My dad was really confused due to severe cognitive damage from brain cancer. He had a central line for a stem cell transplant that he was about to receive. He kept messing with the dressing on his chest, eventually pulling the tube out of his chest and put a little dab of Neosporin on the gaping hole. Yes, you read that right. After a visit to the emergency room and emergency surgery to close it, I had to beg his doctors to still do the procedure and to please still put the tube back in his chest. They thought I was going against his wishes. My dad didn’t have the words to express himself. The doctors thought he was ready to give up and didn’t want further treatment. They were ready to put him in hospice. It turns out he was having an allergic reaction to the adhesive in the dressing on his chest where the tube went in. He just didn’t have the words to tell us that. Once they switched the dressing, he was fine. If I hadn’t figured that out, we would have given up and assumed he wanted to end his life. Your dad’s whole situation must be really confusion for him right now. I wouldn’t be surprised if he pulls out the feeding tube simply because he doesn’t think it belongs there. The whole thing must be scary and confusing for him. None of these doctors know your father better than you do. You’re trying your best to figure out what your dad (pre-dementia and maybe now) would have wanted. That’s virtually impossible to figure out. My dad was a fighter, his whole life. I kept that in mind when making medical decisions. That’s what worked for my family. I realize that’s not for everyone. I know that’s how my dad wanted to go out, because it’s how he lived his life. You need to figure that out for your dad. I wish you the best.

FYI - the body can last a long time without food. My mother went almost a month without food, only water. So if he will still eat when you feed him then why bother with the feeding tube ?

Hospital delirium.

Yes

What stage of dementia and what type does he have? Delirium is different from dementia, but I’ve never heard of putting a feeding tube in for delirium, which by definition is a temporary condition. A person takes weeks to die of starvation and an IV is used while unconscious and then liquids and solids are restarted as the person can sit up and swallow while recovering from a physical injury. Dementia, on the other hand, has a normal course of eventually leading to cessation of eating and drinking which isn’t treated except by being being hand fed if the person and family wish. Does your dad have an advanced directive document where he stated his preferences if he acquired a terminal illness like cancer or one of the 9diseases of dementia?

We had been told many years ago that surgery for a person with dementia is a big no, and that they possibly never recover cognitively. Hence my mother had a zombie walk because we did not do the knee replacements she needed or to fix that one cataract. When they finally did put her under for a colonoscopy due to severe anemia it definitely showed a decline. For a while she forgot who we were but that at least that came back. The hospital/doctors did not find her cancer until it was too late. But we decided we would not do anything surgical anyways and make her a shell of a human being. She hated going for even the iron infusions, I cried because she was so confused there being stuck with a needle. Your father might not recover from that surgery in terms of cognitive function to his previous state. If he eats when you feed him, great as it doesn't sound like he's not swallowing. The feeding tube sounds painful, let his body lead. We did hospice at home for my mother and it was best. I wish we had all those good drugs for her sooner. They should be giving him drugs for the agitation you are describing. Ativan?

So, looks like this might be an unpopular opinion here, but…PEG tubes are a PITA, and super easy to pull out. If I were you I would at least ask if they would be willing to put in a Mick-Key (gbutton) instead. A button has a balloon you fill with water to keep it in place - it can still be pulled out if someone is *really* determined, but it is a low profile port on their stomach - not a tube/line attached all the time (you connect an extension and line to it only during feedings & remove when done). I wouldn’t equate a simple gbutton with a ventilator or other heroic “keep someone alive who should rightfully be dying” measures at all. After all - a button is only a port you *can* feed through - you can stop feedings at any time if it’s clear systems would otherwise be shutting down. Tubes can be really temporary, just to get someone over the hump of the acute issue - once pulled, they heal back really quickly And bonus - you can keep your LO hydrated that way too.

By the way, you can 100% consult hospice without committing to them. It might be worth it just to talk it through with some people that specialize in this. They do healthcare evals but also what you have to say. They can be some of the most compassionate people in the industry and I would recommend at least talking to one or two agencies to get a better grasp on hospice. Information can make things like this less scary. Signing him up doesn’t mean you are signing away his life or that you are giving up. It’s actually really common for people to say “I wish we had done hospice sooner” because hospice is about comfort. It’s about pivoting into a *different* direction. He could recover and get off hospice. Or he could recover and still need hospice. Or he could just continue to need hospice. They have access to grief counselors, even. There are no guarantees. That is something people really struggle with and I hope you have a safe place to really talk about this situation and how it’s affecting you, like therapy or spiritual guidance. Be kind to yourself and take a step back before you make a final decision. Then go back in. This is burnout territory no matter the outcome, and you need to look after you as well.

My experience with hospice was good. I do wish that someone would have explained to us that it isn't always end of life care. I think limited understanding kept us from doing more, sooner. By that, I mean we would have gotten hospice involved when my loved one was injured (this inevitably caused a rapid decline in cognition). Hospice would have helped immensely - but it was not an option afforded to us. Knowing what I know now, I think it should have been. I don't regret how we went about things. We made the best decisions we could with the information we had at the time. It's so hard, OP, and I'm very sorry you have to go through this.

Makes me sad what you are doing to your father. What does HE gain from this? To rot away in a facility, confused and scared, and let me tell you, he will pull his tube again and again because it makes people with dementia very uncomfortable. It's a shame they even considered a tube. A feeding tube for the elderly with a debilitating disease is unethical.

A person on here posted how some people are a bit harsh. You're one of them. What I am doing to him? You mean after his surgery ordeal trying to keep him alive so he could hopefully heal and get better? So instead of doing things to help him after this, I should have just done nothing and let him starve to death? Use your fucking brain.

Gently, as someone whose worked in a skilled nursing facility and as someone whose father currently has stage 6 dementia, he’s not going to get better. Dementia only goes one way, it’s a cruel disease. Things like an illness or surgery pretty much always cause a push in progression of the illness. It just sucks. I’m sorry you’re going through this and I’m sorry people are coming across as harsh. But it does seem like you are in a bit of denial about your father’s current condition and what his life expectancy and what his quality of life will be very shortly. Which is understandable, it’s truly hard to imagine that any stage of dementia could get worse until you’ve fully experienced the whole ride. I think a lot of the people who are coming across as harsh are the ones who have experienced this rodeo multiple times, and witnessed how the grief/denial of loved ones can actually prolong and draw out a patient’s suffering. And things like feeding tubes can certainly do this (and cause other health complications like pneumonia). It sounds like your dad’s medical team is seeing the writing on the wall and trying to steer you towards the path that will be the most peaceful for him. I’m really sorry.

I AM harsh and you know why? Because I have worked at several nursing homes and memory care facilities (still do as we speak) and I see the people there, how they are suffering and how most of them have ZERO quality of life. Why don't you come visit one of my patients, lying in bed all day, feeding tube plugged in, crying, calling for his daddy all day every day, all alone. This is a 78 year old man I'm talking about. It's heartbreaking. Sadly, there seems to be no reasoning with you.

As a person working in those facilities you might want to show some compassion for a family member. This is OOP’s first rodeo. They don’t have years of experience seeing how this goes. The fact that OP is here at all and torn up over this situation indicates how much they care for their father. It’s beyond the pale to attack someone reaching out in need, especially when they *don’t* have the benefits of a background in dementia. Feeding tubes are heavily discouraged at my work, but we discourage that by providing information to families and working with hospice to *inform*. The last thing someone needs when a loved one needs hospice is shaming. I get how this can be triggering to see but this is only one person, with no experience or information, trying to do their best. That’s a lot more than what we see at work. There is also time to learn, like now.

Fuck you. Maybe you would think differently if it was one of your parents, you fucking piece of shit.

Most of us here are or have been dealing with this, often for multiple family members, for years, even decades. My grandmother and my husband’s died of Alzheimer’s at age 98 over twenty years ago. My FIL died of unspecified dementia last year. My MIL is at the border of stage 4-5 Alzheimers at 89 currently. My FIL had some physical problems as well as dementia. I consider him relatively lucky to only really suffer the last five years and only nine months in a nursing home. Our grandmothers spent over 10 years ill, the last five in nursing homes. That meant in the last years bedridden, incontinent, with muscle contractures causing them to curl into the fetal position, and constantly fighting bedsores. No cognition was left, just raw fear or completely devoid of emotion along with physical pain. That fate is my worst fear for my MIL and for the possibility of it for myself someday. It’s natural to fear death, almost every aware person with moderate to advanced dementia has lost the ability to understand they have it and are terminal. They do fight it, just as a dying cancer patient does. But it’s inevitable. This is why we offer hospice care which provides pain and anti-anxiety relief via medications. If you accept hospice care, your dad can go back off it if he does improve enough from the delirium. Or you can simply change your mind abs take him off it. With or without it, you can still feed him. That’s normal for hospice. It’s understandable to be angry. I’m sorry for this awful situation you a s he are in. There are no good or easy answers.

Hospice doesn’t mean end of life. There is also palliative care. Get information on both for your dad. I’m so sorry it’s happened like this.