Both of my parents have dementia. My mother won’t talk about end of life topics. Told her doctor she wants me to make the decisions for her. I’ve been having to wing their care for 4 years now. My dad has just started having trouble swallowing. This whole process is incredibly overwhelming emotionally, physically and financially. They didn’t plan for this stage of life and it sucks for me as an only child. My husband and I will NOT be putting our kids through having to guess what we want. Thank you Nurse Julie.
Hope you got power of attorney and final decisions set up when they were coherent. Just went through the same thing with my mom and I'm the only one who was available to care for her. It was not fun!
@@cjvklhortonfamily5 I feel for you. My mom has dementia and we have a care giver starting tomorrow for 12 hours/wk. Trying to keep her in her home as long as possible, but her legs are giving out, too. I am doing this alone with my husbands help. My father’s heart attack and death 6 years ago was much easier.This is so hard to figure out.
@@deepintheheartoftx7548 my thoughts and prayers are with you. Both of my parents fell I’ll at the same time. Even though there were 3 children local out of 6 we had to get help. It is draining mentally and physically, not to mention emotionally.
@@cjvklhortonfamily5 That is a lot to be over seeing. 💚 And strength to you. More than one is really necessary for two parents in this state. My dad choked on food while in the nursing home and passed. The number of ppl with these diagnosis rising at ridiculous rates these days.
@@deepintheheartoftx7548 I appreciate your intention to keep your Mom at her home, as long as possible. When sick, where do most of us want to be- home.
PLEASE! Terminal illnesses or not, it's important to get all your ducks in a row! Wills, trusts, funeral/ burial arrangements - GET ALL IN ORDER! Family won't be able to contests your wishes when you do this while your congnescent in doing so.
YES!! And again I say yes! I am a mortician, and have seen families struggle, fall apart, and the ugly side of affairs not in order. Not to mention the paperwork and legal issues. Please it is the greatest gift you can give your family
And after putting affair’s in order, keep the necessary fam/friends UP TO DATE on not only WHAT you want, but WHERE to find your instructions . Sadly, my sister-in-law died at last two days ago after nearly a year of skilled care/gastric feeding tube doe to traumatic brain injury from repeated falls. Her Advance Directive was discovered 3 weeks ago -the last page in the back of an old binder. Only then, did we learn that she expressly did not want to be on a feeding tube. Once it was removed, she lived 12 more days kept peaceful and comfortable by excellent hospice professionals. Had we known from the start, she would have suffered less. Thank you, Julie🙏
I have congestive heart failure as well as a brain disease which will eventually end in dementia if I haven't been struck down with a stroke. I've made my will, organised my financial situation, told my daughter I want to go into care and not live with her and the funeral I want. I've also made her my my medical advocate when I can no longer make reasonable decisions. I felt I needed to make these decisions while I am in a sane mental condition.
My paternal grandfather had dementia so bad it was sad. The day before they were taking him to the nursing home he walked away from his home and they found his skeletal remains a year later. Please watch your loved ones. If u have to put them in a place that can keep him safe
Felt sad for such kind of incidents. Private nursing homes are mostly under-staff (most of them turn a profit by cutting labours), hence tradegies happen. 😢 Guidelines such as GPS watch/wristband & cards written with identification, contact nos, address are essential to elderly with dementia. Hard lessons learned.
After seeing not good care, in a facility that was voted one of the best, it is not such a great option, as I see it. Surely there are some better places. I wish the same options were that are for our beloved pets. It is sad to watch these diseases take one down to such a vulnerable state.
And what about nursing home costs? They are not cheap. Seems it could literally bankrupt the remaining family. Is that truly what a person who goes into a nursing home would truly want to occur?
@@charlesbrightman4237 And that is my biggest concern, I know dementia is coming down the road. I have my will and directives in place, but do I want to watch everything I worked for all my life get sucked up by a nursing home and nothing left for my kids? I'm a person who believes in paying his own way but I thought you could just go into a nursing home when things got bad enough but that's not the case. They have to drain all your assets THEN medicaid takes over. Thats the really ugly decision I have to contend with.
I did this through my palliative care about a month ago, and started paying on my cremation about 4-5 months ago. I have also talked with my husband who will be my care giver here at home. After my last cyberknife radiation on my head August 6, I became really shaky, so I decided it would be my last. I doubt I will see my 62nd birthday if the spots on my brain continue to pop up. I'm leaving everything in God's hand and I am at peace with it. Thank you so much for all your information.
Just want to remind you about the most most important decision we need to make before we die, and that is to receive Jesus as our Lord and Savior. I just wanted to let you know a little about what the bible says. It takes more than just believing in God. John 3:3 says, we must be Born Again to get to heaven before our time is up.. Everyone has sinned and fallen short of God's glorious standard, and all need to be made right with God by his grace, which is a free gift. We need to be made free from sin through Jesus Christ. Bible also says, its not by works should any one boast. So being a good person does not get you to heaven either. The only way to heaven is by repenting of your sins, which means a change of mind, and putting your faith and trust in Jesus. Romans 10:13 says, Whosoever shall call upon the name of the Lord shall be saved. So you see, there is a need for salvation to get to heaven. That is why Jesus died on the cross. He took all of our sins upon him, so that if you accept Him as your Lord and Savior, you can have eternal life in paradise. You do not get there being a good person, or doing good deeds. Many people believe that is all it takes. Jesus also says, that I am the way, the Truth, and the Life, no one comes unto the father, except through me. So please make that decision, so that you can have peace and comfort before your time is up. Its the most important decision of your life. You can then have that peace and assurance of salvation in your heart. All you have to do is humble your heart and pray with faith,... "I repent of my sins, and I turn to You. You said in Your word that if we confess with our mouth the Lord Jesus, and believe in our hearts that God raised Him from the dead, we shall be saved. I ask You Jesus to forgive me of all my sins, come into my heart, and take control of my life. From this day forward I want to live for you. ..... It's not about the words, it's about your heart. The Lord will then send His Holy Spirit to live on the inside of you. The Holy Spirit is Gods seal of salvation, and your evidence you have been Born Again. He will transform your heart and mind. He will bring you into a personal relationship with Jesus. You will become a new person inside. 2 Corinthians 5:17 says: “Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new”. Its truly amazing! You will be filled with peace, love, and joy of the Lord inside you. All the fruits of the Holy Spirit. He will comfort you in your time of need, and give you the strength to endure. No matter what you are going through, Jesus wants to help you through it. You can lean on Him. Its the most important decision of anyone's life. God's Word says that we are saved by grace through faith in Christ Jesus and not by our own efforts or works (Ephesians 2:8-9). Grace Alone. Jesus is the only way to heaven. Please believe me, its all in the bible. Its the Word of God..I am not judging or condemning anyone, just letting you know there is much more if you put your trust in Him. Jesus cares for you, and does not wish for you to be separated from him. Please don't wait. Today is the day of salvation. He loves you, and does wish for anyone to be apart from Him, but to have eternal life in heaven. I'm praying for you. Please ask Jesus to come into your life today, my friend, You are special to Jesus. Romans 10:9-10. "If thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. Be blessed
@@Outsider4JC I don't want to be rude or harsh, I realize you were coming from a place of caring, however, what makes you think when she said it's in G-d's hands that she doesn't already have her own faith that she believes in, feels good about and works for her? I don't understand why Christians feel the need to push their beliefs on other people especially this terrible time for her. Again I know I'm speaking for somebody else and I'm not trying to be rude but I am always amazed by this behavior. Anybody can feel free to enlighten me. I am truly curious
@michellerobins I hope you do not take offense that I replied to one of the people that replied to you. I am truly mystified when people leave the types of reply that I responded to. I'm hoping they reply gave you comfort. I'm so sorry you are going through this time of waiting and uncertainty my thoughts are with you and your loved ones. May things go as smoothly as possible for you ❤❤❤
My husband recently passed away of Alzheimers. He never wanted to talk about end of life decisions. Oddly a few weeks before he passed he finally let his wishes known. I did have to feed him as he could not do so any more. We had an agreement that if he didn't want to eat, I would stop feeding him I would never force food on him. No meant no. His only wish was never to be put into a care home. Fortunately, I was able to care for him until the end but it was not easy.
My Granddad had quite advanced Alzheimer's when he developed bowel cancer. In his mind, he was back in WW2 & pacing the halls of the nursing home trying to escape enemy soldiers (for context, we're from the UK). My Nanna, Uncle & Dad agreed that it would be cruel to add to his suffering by treating him with chemo that he was unlikely to survive anyway. We all agreed with that decision (my Mum, siblings & myself). He passed away peacefully not long after. For context, this was over 20 years ago before it was common practice to discuss things in advance. But I firmly believe my Granddad would have made this decision himself if advance decisions were a thing back then.
My mother had colon cancer then dementia. My dad went downhill and she died eight months later. I withheld chemo for her. She wouldn’t have understood how sick she would have been.
Glory to God that He gave me wisdom to get everything in place three years ago when my husband was diagnosed with vascular dementia. He is now on Home Hospice and will die within the next week and then he's off to see The King, Jesus, The Christ!!! Amen and Amen!!! 😊
Another thing to consider, (Dementia aside), other illnesses (ie: strokes) and/or accidents can occur quickly without any real forewarning. Plan ahead BEFORE it is even needed to do so, just in case.
My elderly Dad wouldn’t discuss anything relating to end of life so when his health declined, all I knew was that he didn’t want to die. Not very helpful. I had medical power of attorney and he told the doctors that I could speak for him on everything. I was in the horrific position of having to make decisions for him based on what I thought best for him. It was such an honour that he trusted me that much but it was traumatizing and I will *never* put my family through that.
Julie: Great information. Yes planning is best so family are not winging it’s this can cause issues with family members if they disagree. It should be what the affected person wants and how they want life to end for them.
Very nice of you to make this video,Julie.I was feeding my 86 year old Mom when she passed 4 months ago.She was in a facility on hospice for maybe 10 days,it all went very fast,a blessing I guess.I"m pre planning my funeral very soon.I want as many expenses and questions taken care of beforehand.My Mom had dementia,it was horrible.Most diseases are i guess.Her hospice nurses were wonderful.Truly,special people.
@@kathleendanielle672 please educate yourself better. Not all funeral directors are there to make the most money. Not all are looking to take advantage of the family. Stop giving us a bad rep because you had a bad experience. One doesn’t speak for all.
My in-laws took in his mother at the end of her life. She was kept in the home, bedridden, and apparently comfortably semi-conscious at the end, once she stopped eating and drinking of her own accord. I trusted my in-laws and their approach. It has since informed my own approach to end of life. I will leave more specific instructions since family and friends may be more focused on their own imminent loss rather than vague memories of what I've voiced over the years. Thanks for the reminder.
My mum had a fall whilst living in a care facility- we had a not for resuscitation- mum had a fall in the middle of the night and the nurse couldn’t find the DNR so the paramedics intubated her when she reached the ER I was able to instruct them to remove the tubes as I knew what mum wanted- they removed them and she passed an hour later - that knowledge of what mum wanted stopped any form of guilt xxx
We just got my moms official diagnosis of Alzheimer’s this past Wednesday. We had already talked about limiting medical intervention. This video now has me thinking I should discuss this more with her and have videos or have her put it in writing of her wishes. Thank you for all you do. This information is very helpful.
Be very careful. Hospitce companes are vultures when it comes to dementia patients. There is a huge problem with Hospice eligibility fraud, especially with Medicare patients. This means they are being pushed into hospice before they are even near dying. Once they are in hospice they get no more treatments so they will start to decline even if they were physically okay when they went in. My mother was forced into hospice by sister when she would walk eat and comprehend. She died 16 days later. They have here a bunch of mophone and other meds and she became unconscious and died. That isn't legal but it happens routinely. It's a wrongful death suit.
Hospice Nurse Julie . Thank you for bringing up this extremely important subject . People PLEASE listen to what she is telling you . Makes your decisions known now while you are still ok to make decisions for yourselves . I for example have a living will . But if while i'm ok and i'm told that I have a terminal illness . I will not wait for the disease to take me . I will leave this world my way . Thats is a decision you have to make .
Me too! After my horrific experience with the funerary “business” when my husband died I learned a about the Anatomical Gift Program-and not only do we get to contribute literally beyond our lives it’s all *free.* And since I’m so going to hell anyway I figured I might as well get a head start with a free Roast and Toast when they’re done. Imagine that: FREE! All of it! The price is right!
Julia I love your videos! This is information is so important for families to know. I'm an RN, I did decades in ICU and 14 months in inpatient Hospice. Please do a video about getting hospice EARLY and not waiting for the last minute. It prevents so many problems if hospice is started early. Thank you for what you do .
I know someone whose mother has dementia. She would always tell me that the severity of dementia can be worse than at face value. She always had to travel with one of her daughters (sons paid the bills) and a caregiver for things like going to the washroom. She would tell me her mother is more severe in her dementia that what many realize. She didn't want a lot of hands involved and warned people so they knew her dementia was worse than what it is at face value. It was sad but I was grateful to know she was so on top of it for her mother.
Planned w/my Daddy long before he was diagnosed w/ dementia & sundowners. Glad I did; made the 7.5yrs of caring for him by myself, finding him the day of his passing in my home, and all of the things that came with it all not as difficult as it could have been. • All of my own wishes have already been made for my loved ones as well.
Not on topic - but just saw you on “Last Week Tonight” what a treat! And thank you - my mother died on June 30 in hospice, and your videos really helped my sister and I
Super informative, and actually makes me feel better about my options if I ever end up with dementia. There's so much power in education and communication. Thanks Nurse Julie!
Hi Julie, I can't thank you enough for all the great information we recieve. Julie please guide me thru my younger brother that's dying of pancreatic cancer. I'm very scared and I try not to cry in front of him but time is getting so close, he will be signing up with hospice soon. Thank you julieGod bless you
😇 Julie. 🙏 I'm 69 and healthy BUT had to go to the ER for a nosebleed tsunami. Random and recovered BUT on that gurney I had no control or agency re the outcome. Sooo I'm doing it, Will, Power of Attorney... with professionals who have done it before. Put a bow on it. Peace of mind. My project the next few weeks. 💪🙏
Have your doctor there with you when you discuss the end of your life with your family?? What medical system do you operate in?? You're lucky if your doctor has ten minutes to give you the terminal diagnosis, much less discuss all the fine point. You might even be told to check in online through a 'patient portal' to find out about that.
Hopefully you live in a country or a state that has Death With Dignity Laws. My greatest wish for you is you can exercise your autonomy what ever you decide. Best wishes, my friend,
I have a friend whose mother had planned out and paid for every step of her after-death care, to include the embalming, the casket, the train ticket to transport her body from FL to NY, the burial plot and the burial service. There is no kinder thing one can do than to ease the burden for those left behind. I'm trying to figure my own plans out, but aquamation is not yet available here in MD, though it is legal.
Thank you, Julie. I wish my husband would be able to do this. I started noticing something was off about 4 years ago but couldn’t get him to go to a neurologist until last October. By that time , he was diagnosed with FTD and a large part of his frontal lobe had deteriorated. Now it’s too late because he wouldn’t be able to fully let me know. We are 69 years old and never expected this. I’m going to make plans so my kids are not in this position!
SERIOUS QUESTION: Since all of life itself is ultimately meaningless in the grand scheme of things, (all life on and from this Earth, real and artificial, will be no more one day), why cannot society allow people to end their own life if they and they alone choose to do so?
There’s the rub, my friend. I fighting in my own state to get Death With Dignity Law passed. When people actually *have* the option to do so, many will get the medication but never use it. I think it’s kind of a sense of security knowing you *do* have this option.
@@tundrawomansays694 Thank you for responding and for what you are trying to do. Sure, some people want quantity of life (to live as long as possible regardless of the cost), but others choose to have quality of life (when quality of life gets too low, they see no real reason to keep going on suffering.) I believe people should have the choice, it's their own life isn't it, nobody else's. Nobody asked to be born, people should have a choice as to when to leave this existence. Otherwise, society should pick up all the costs of keeping someone alive whom does not want to stay alive. Why should a person pay to stay alive whom does not want to stay alive?
Yes we need to allow people a peaceful exit option! If nothing else other than to give peace of mind that the option is there. Life would feel much less stressful
@@Rosie-xm7ry The way I currently see it is that at a minimum, at least for adults, especially retired adults. Even if a person lived throughout all of future eternity minus one day (figure of speech), (and we are a long way away from that), they would still exit the living one day from something. But why should a person suffer for all of future eternity minus one day much less suffer throughout all of future eternity? What for? Just to be able to say that life itself has ultimate eternal meaning and purpose, even if it is only eternal suffering? And whether a person and life itself ended today or one day in future eternity minus one day, wouldn't the ending of all of life itself still be the same? Only if at least one single entity truly existed throughout all of future eternity could life itself even potentially have eternal meaning and purpose throughout all of future eternity. And while many humans appear to have apparent fairy tale beliefs, they appear to be just that, fairy tale beliefs, it appears that it is because they cannot deal with real reality. Life itself ends.
We have also had meetings with our adult children and the hospice bereavement counselor. We wanted to be sure we are all on the same page and the kids know about support services for themselves. Yes, we cry, but it is helpful crying. Like popping a zit ot lancing a boil
My respect to Julie for saying die, died, death, dying, and dead. As opposed to passed on, passed away, or passed. The former are not dirty words and they are not disrespectful. I don't know why we have so much trouble saying them in the modern age.
i completely agree. my family hates to read all this'passed on' euphemisms for death. As such when my mother died we wrote in her obit that 'she died' on January 19th, 2021. This is what she/we wanted to say!!
@@Sarah1212mm There's nothing wrong with that. Respect to you, your family, and your mother for not bowing to unnecessary political correctness, which is exactly what passed away, passed on, etc. are.
Thanks for this! I tell people we plan for a birth and things that may come up, death is the same kind of situation. Also Julie Ive had to address ahead of time with people the possibility that the hospice pt could have a heart attack or stroke and that hospice will take care of that as well....
Dying of a UTI is painful. How do you know your loved ones who have no healthcare training will make sure you are “comfortable” as you’re in pain and dying.
You are so right Julie. My Mom’s death experience was horrific because we had no instructions, directions and verbal communication was not an object. I had to make the decision. Worst 13 days of my life. I wonder if Mom approved my decisions.
Question re UTI antibiotics - I was recently told that UTIs were the exception to no antibiotics because that is more of a quality of life rather than an ending of life decision. Will you please expand more on that?
To some degree it is an ending of Life decision for UTIs. If a UTI is not treated you are more than likely become septic going to septic shock and then your organs will start failing. People have died from UTIs that weren't treated . I have had sepsis four times in my life twice I almost died. My problem is with the UTI I don't get symptoms so by the time I notice anything's wrong I'm already septic. I also worked as a nurse for 45 years and have seen patients with UTIs that aren't treated that have died
My Mom didn't say anything when she couldn't eat anymore. Even though we asked her. She lived still in her own home bcuz she didn't want a nursing home. She went in the hospital with obstruction of her bowels, lost alot of weight. She died at 96 yrs old in hospice.
Thank you. I have written down a statement wich I have given to my doctor. Bit you mention more items which I have to consider. I will make a new statement and discuss it with my family. I live in the Netherlands in which euthanasia is permitted only with 2 more scandoctors beside your own doctor.
Thank you. I have written a lot down and have spoken about it with my doctor. I live in the Netherlands and the law permits euthanasia if scandoctors have given an extra permission. But you give me more items to think about whether I want a treatment or not.
My mother was euthanized in hospice in Oregon in March. Many dementia patients are killed with palliative sedation. This is completely illegal in the U.S. IT is also medicare fraud.
What if no one cares about you, like my family, they could care less. My mother is 93, lives in Cocoa, Fl, with my abusive brother. I live on the west coast of Florida across the State. My own health and transportation limits me. My sister lives closer to my mother and does not want any thing to do with her, she was the one who made the arrangements and talked her into moving there, My sister 2 years ago was suppose to be making arrangments for assisted living for her. I feel like my hands are tied, my sister is the listed caregiver. My brother cut off all contact with her.
My mother had an advanced directive signed stating that she did not want a feeding tube. The doctors completely ignored it. She ended up with feeding tube, catheters (urine and bowel) ventilator and soon after a tracheotomy. What good is an advanced directive if doctors don't abide by it?
You should have told the doctors that you have engaged the services of another professional...a lawyer. Then watch the doctors suddenly say "Oh right. The advanced directive"
I think we all should live together and just pool some resources together and go live life heck we could travel 2 times and eat what we want because we forgot we all are sick. ❤❤🎉😢😅❤
My mom I believe is in stage 6 with dementia. She’s in total denial. She can barely walk and completely incontinence. She will not seek medical care nor discuss her conditions . I’m truly at a loss for words . I have no idea what she wants 😢
How far along should u be in any illness ? I have heart problems as well as liver disease and a tumor on my kidney and diabetes over weight smoker and the illnesses go on forever it’s crazy why I am still here. So do you have any advice as well as I have no family and friends that are to busy and itff so ok I get that but I am afraid I am going to have a stroke due to the living space in which I live.!😢very stressful I can’t even really leave my house I am not able to walk so now I am in a wheelchair life feels and is very limited. 😢
God created man in his own image, one of the most violent and cruel animals on the face of the earth. Think about that before you agree to “see God” after you die.
We have an IPOST behind the front door for my husband and I carry a copy in my purse. My mom has hers on her fridge. As healthcare providers, we see what happens to the “do everything” crowd. It isn’t pretty
Both of my parents have dementia. My mother won’t talk about end of life topics. Told her doctor she wants me to make the decisions for her. I’ve been having to wing their care for 4 years now.
My dad has just started having trouble swallowing. This whole process is incredibly overwhelming emotionally, physically and financially. They didn’t plan for this stage of life and it sucks for me as an only child.
My husband and I will NOT be putting our kids through having to guess what we want. Thank you Nurse Julie.
Hope you got power of attorney and final decisions set up when they were coherent. Just went through the same thing with my mom and I'm the only one who was available to care for her. It was not fun!
@@cjvklhortonfamily5 I feel for you. My mom has dementia and we have a care giver starting tomorrow for 12 hours/wk. Trying to keep her in her home as long as possible, but her legs are giving out, too. I am doing this alone with my husbands help. My father’s heart attack and death 6 years ago was much easier.This is so hard to figure out.
@@deepintheheartoftx7548 my thoughts and prayers are with you. Both of my parents fell I’ll at the same time. Even though there were 3 children local out of 6 we had to get help. It is draining mentally and physically, not to mention emotionally.
@@cjvklhortonfamily5 That is a lot to be over seeing. 💚 And strength to you. More than one is really necessary for two parents in this state. My dad choked on food while in the nursing home and passed. The number of ppl with these diagnosis rising at ridiculous rates these days.
@@deepintheheartoftx7548 I appreciate your intention to keep your Mom at her home, as long as possible. When sick, where do most of us want to be- home.
PLEASE! Terminal illnesses or not, it's important to get all your ducks in a row! Wills, trusts, funeral/ burial arrangements - GET ALL IN ORDER! Family won't be able to contests your wishes when you do this while your congnescent in doing so.
So true. My husband and I are planning to do thid
YES!! And again I say yes! I am a mortician, and have seen families struggle, fall apart, and the ugly side of affairs not in order. Not to mention the paperwork and legal issues. Please it is the greatest gift you can give your family
And after putting affair’s in order, keep the necessary fam/friends UP TO DATE on not only WHAT you want, but WHERE to find your instructions . Sadly, my sister-in-law died at last two days ago after nearly a year of skilled care/gastric feeding tube doe to traumatic brain injury from repeated falls. Her Advance Directive was discovered 3 weeks ago -the last page in the back of an old binder. Only then, did we learn that she expressly did not want to be on a feeding tube. Once it was removed, she lived 12 more days kept peaceful and comfortable by excellent hospice professionals. Had we known from the start, she would have suffered less. Thank you, Julie🙏
I have congestive heart failure as well as a brain disease which will eventually end in dementia if I haven't been struck down with a stroke. I've made my will, organised my financial situation, told my daughter I want to go into care and not live with her and the funeral I want. I've also made her my my medical advocate when I can no longer make reasonable decisions.
I felt I needed to make these decisions while I am in a sane mental condition.
My paternal grandfather had dementia so bad it was sad. The day before they were taking him to the nursing home he walked away from his home and they found his skeletal remains a year later. Please watch your loved ones. If u have to put them in a place that can keep him safe
Oh my god that’s awful, I’m so sorry you had to experience that. I really hope you’re finding peace again.
Felt sad for such kind of incidents. Private nursing homes are mostly under-staff (most of them turn a profit by cutting labours), hence tradegies happen. 😢 Guidelines such as GPS watch/wristband & cards written with identification, contact nos, address are essential to elderly with dementia. Hard lessons learned.
After seeing not good care, in a facility that was voted one of the best, it is not such a great option, as I see it. Surely there are some better places. I wish the same options were that are for our beloved pets.
It is sad to watch these diseases take one down to such a vulnerable state.
And what about nursing home costs? They are not cheap. Seems it could literally bankrupt the remaining family. Is that truly what a person who goes into a nursing home would truly want to occur?
@@charlesbrightman4237 And that is my biggest concern, I know dementia is coming down the road. I have my will and directives in place, but do I want to watch everything I worked for all my life get sucked up by a nursing home and nothing left for my kids? I'm a person who believes in paying his own way but I thought you could just go into a nursing home when things got bad enough but that's not the case. They have to drain all your assets THEN medicaid takes over. Thats the really ugly decision I have to contend with.
I did this through my palliative care about a month ago, and started paying on my cremation about 4-5 months ago. I have also talked with my husband who will be my care giver here at home. After my last cyberknife radiation on my head August 6, I became really shaky, so I decided it would be my last. I doubt I will see my 62nd birthday if the spots on my brain continue to pop up. I'm leaving everything in God's hand and I am at peace with it. Thank you so much for all your information.
🙏🏻💗🙏🏻
I’m so sorry. You are a very brave woman.
Just want to remind you about the most most important decision we need to make before we die, and that is to receive Jesus as our Lord and Savior. I just wanted to let you know a little about what the bible says. It takes more than just believing in God. John 3:3 says, we must be Born Again to get to heaven before our time is up.. Everyone has sinned and fallen short of God's glorious standard, and all need to be made right with God by his grace, which is a free gift. We need to be made free from sin through Jesus Christ. Bible also says, its not by works should any one boast. So being a good person does not get you to heaven either. The only way to heaven is by repenting of your sins, which means a change of mind, and putting your faith and trust in Jesus. Romans 10:13 says, Whosoever shall call upon the name of the Lord shall be saved. So you see, there is a need for salvation to get to heaven. That is why Jesus died on the cross. He took all of our sins upon him, so that if you accept Him as your Lord and Savior, you can have eternal life in paradise. You do not get there being a good person, or doing good deeds. Many people believe that is all it takes. Jesus also says, that I am the way, the Truth, and the Life, no one comes unto the father, except through me. So please make that decision, so that you can have peace and comfort before your time is up. Its the most important decision of your life. You can then have that peace and assurance of salvation in your heart. All you have to do is humble your heart and pray with faith,... "I repent of my sins, and I turn to You. You said in Your word that if we confess with our mouth the Lord Jesus, and believe in our hearts that God raised Him from the dead, we shall be saved. I ask You Jesus to forgive me of all my sins, come into my heart, and take control of my life. From this day forward I want to live for you. ..... It's not about the words, it's about your heart. The Lord will then send His Holy Spirit to live on the inside of you. The Holy Spirit is Gods seal of salvation, and your evidence you have been Born Again. He will transform your heart and mind. He will bring you into a personal relationship with Jesus. You will become a new person inside. 2 Corinthians 5:17 says: “Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new”. Its truly amazing! You will be filled with peace, love, and joy of the Lord inside you. All the fruits of the Holy Spirit. He will comfort you in your time of need, and give you the strength to endure. No matter what you are going through, Jesus wants to help you through it. You can lean on Him. Its the most important decision of anyone's life. God's Word says that we are saved by grace through faith in Christ Jesus and not by our own efforts or works (Ephesians 2:8-9). Grace Alone. Jesus is the only way to heaven. Please believe me, its all in the bible. Its the Word of God..I am not judging or condemning anyone, just letting you know there is much more if you put your trust in Him. Jesus cares for you, and does not wish for you to be separated from him. Please don't wait. Today is the day of salvation. He loves you, and does wish for anyone to be apart from Him, but to have eternal life in heaven. I'm praying for you. Please ask Jesus to come into your life today, my friend, You are special to Jesus. Romans 10:9-10. "If thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. Be blessed
@@Outsider4JC I don't want to be rude or harsh, I realize you were coming from a place of caring, however, what makes you think when she said it's in G-d's hands that she doesn't already have her own faith that she believes in, feels good about and works for her? I don't understand why Christians feel the need to push their beliefs on other people especially this terrible time for her. Again I know I'm speaking for somebody else and I'm not trying to be rude but I am always amazed by this behavior. Anybody can feel free to enlighten me. I am truly curious
@michellerobins I hope you do not take offense that I replied to one of the people that replied to you. I am truly mystified when people leave the types of reply that I responded to. I'm hoping they reply gave you comfort. I'm so sorry you are going through this time of waiting and uncertainty my thoughts are with you and your loved ones. May things go as smoothly as possible for you ❤❤❤
My husband recently passed away of Alzheimers. He never wanted to talk about end of life decisions. Oddly a few weeks before he passed he finally let his wishes known. I did have to feed him as he could not do so any more. We had an agreement that if he didn't want to eat, I would stop feeding him I would never force food on him. No meant no. His only wish was never to be put into a care home. Fortunately, I was able to care for him until the end but it was not easy.
I never thought of dementia as being a terminal disease. But, it is.
My Granddad had quite advanced Alzheimer's when he developed bowel cancer. In his mind, he was back in WW2 & pacing the halls of the nursing home trying to escape enemy soldiers (for context, we're from the UK). My Nanna, Uncle & Dad agreed that it would be cruel to add to his suffering by treating him with chemo that he was unlikely to survive anyway. We all agreed with that decision (my Mum, siblings & myself). He passed away peacefully not long after. For context, this was over 20 years ago before it was common practice to discuss things in advance. But I firmly believe my Granddad would have made this decision himself if advance decisions were a thing back then.
My mother had colon cancer then dementia. My dad went downhill and she died eight months later. I withheld chemo for her. She wouldn’t have understood how sick she would have been.
@@EBBailey I totally agree. Although it must have been difficult to see her struggle. You made a compassionate, yet courageous decision.
I love your straightforward, honest and thoughtful videos.
Yes, and thanks for the very quiet background music.
Glory to God that He gave me wisdom to get everything in place three years ago when my husband was diagnosed with vascular dementia.
He is now on Home Hospice and will die within the next week and then he's off to see The King, Jesus, The Christ!!! Amen and Amen!!! 😊
🌹🙏🕊️✨✨
🙏❤️🌹My sister passed last night, so I sympathize with you. I can’t imagine how hard it is to lose your beloved spouse.
Another thing to consider, (Dementia aside), other illnesses (ie: strokes) and/or accidents can occur quickly without any real forewarning. Plan ahead BEFORE it is even needed to do so, just in case.
My elderly Dad wouldn’t discuss anything relating to end of life so when his health declined, all I knew was that he didn’t want to die. Not very helpful. I had medical power of attorney and he told the doctors that I could speak for him on everything. I was in the horrific position of having to make decisions for him based on what I thought best for him. It was such an honour that he trusted me that much but it was traumatizing and I will *never* put my family through that.
Julie: Great information. Yes planning is best so family are not winging it’s this can cause issues with family members if they disagree. It should be what the affected person wants and how they want life to end for them.
Very nice of you to make this video,Julie.I was feeding my 86 year old Mom when she passed 4 months ago.She was in a facility on hospice for maybe 10 days,it all went very fast,a blessing I guess.I"m pre planning my funeral very soon.I want as many expenses and questions taken care of beforehand.My Mom had dementia,it was horrible.Most diseases are i guess.Her hospice nurses were wonderful.Truly,special people.
I managed a Cemetery for 8 years Funeral directors love it when your not prepared It's a business to make money Educate yourself & be prepared
We will undertake your advice. Thanks.
Love your comment ❤@@Moo2oob
@@kathleendanielle672 please educate yourself better. Not all funeral directors are there to make the most money. Not all are looking to take advantage of the family. Stop giving us a bad rep because you had a bad experience. One doesn’t speak for all.
My in-laws took in his mother at the end of her life. She was kept in the home, bedridden, and apparently comfortably semi-conscious at the end, once she stopped eating and drinking of her own accord. I trusted my in-laws and their approach. It has since informed my own approach to end of life. I will leave more specific instructions since family and friends may be more focused on their own imminent loss rather than vague memories of what I've voiced over the years. Thanks for the reminder.
My mum had a fall whilst living in a care facility- we had a not for resuscitation- mum had a fall in the middle of the night and the nurse couldn’t find the DNR so the paramedics intubated her when she reached the ER I was able to instruct them to remove the tubes as I knew what mum wanted- they removed them and she passed an hour later - that knowledge of what mum wanted stopped any form of guilt xxx
We just got my moms official diagnosis of Alzheimer’s this past Wednesday. We had already talked about limiting medical intervention. This video now has me thinking I should discuss this more with her and have videos or have her put it in writing of her wishes. Thank you for all you do. This information is very helpful.
Be very careful. Hospitce companes are vultures when it comes to dementia patients. There is a huge problem with Hospice eligibility fraud, especially with Medicare patients. This means they are being pushed into hospice before they are even near dying. Once they are in hospice they get no more treatments so they will start to decline even if they were physically okay when they went in. My mother was forced into hospice by sister when she would walk eat and comprehend. She died 16 days later. They have here a bunch of mophone and other meds and she became unconscious and died. That isn't legal but it happens routinely. It's a wrongful death suit.
Hospice Nurse Julie . Thank you for bringing up this extremely important subject . People PLEASE listen to what she is telling you . Makes your decisions known now while you are still ok to make decisions for yourselves . I for example have a living will . But if while i'm ok and i'm told that I have a terminal illness . I will not wait for the disease to take me . I will leave this world my way . Thats is a decision you have to make .
It seems terrible that I can choose to starve to death or die from an infection, but I can't get help to pass away quickly and peacefully.
Exactly, it’s pointless cruelty. Just give people the option!
I made my directives and am a body donor which means that I will be the first patient for a medical intern.
Me too! After my horrific experience with the funerary “business” when my husband died I learned a about the Anatomical Gift Program-and not only do we get to contribute literally beyond our lives it’s all *free.* And since I’m so going to hell anyway I figured I might as well get a head start with a free Roast and Toast when they’re done. Imagine that: FREE! All of it! The price is right!
Julia I love your videos! This is information is so important for families to know. I'm an RN, I did decades in ICU and 14 months in inpatient Hospice. Please do a video about getting hospice EARLY and not waiting for the last minute. It prevents so many problems if hospice is started early. Thank you for what you do .
Details, Katherine G? What kinds of problems?
I know someone whose mother has dementia. She would always tell me that the severity of dementia can be worse than at face value. She always had to travel with one of her daughters (sons paid the bills) and a caregiver for things like going to the washroom. She would tell me her mother is more severe in her dementia that what many realize. She didn't want a lot of hands involved and warned people so they knew her dementia was worse than what it is at face value. It was sad but I was grateful to know she was so on top of it for her mother.
Planned w/my Daddy long before he was diagnosed w/ dementia & sundowners. Glad I did; made the 7.5yrs of caring for him by myself, finding him the day of his passing in my home, and all of the things that came with it all not as difficult as it could have been.
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All of my own wishes have already been made for my loved ones as well.
Not on topic - but just saw you on “Last Week Tonight” what a treat!
And thank you - my mother died on June 30 in hospice, and your videos really helped my sister and I
This is such an excellent video. I have a friend who is in such a situation and I sent it to her so she can make plans.
Super informative, and actually makes me feel better about my options if I ever end up with dementia. There's so much power in education and communication. Thanks Nurse Julie!
Hi Julie, I can't thank you enough for all the great information we recieve. Julie please guide me thru my younger brother that's dying of pancreatic cancer. I'm very scared and I try not to cry in front of him but time is getting so close, he will be signing up with hospice soon. Thank you julieGod bless you
😇 Julie. 🙏 I'm 69 and healthy BUT had to go to the ER for a nosebleed tsunami. Random and recovered BUT on that gurney I had no control or agency re the outcome.
Sooo I'm doing it, Will, Power of Attorney... with professionals who have done it before. Put a bow on it. Peace of mind.
My project the next few weeks. 💪🙏
Have your doctor there with you when you discuss the end of your life with your family?? What medical system do you operate in?? You're lucky if your doctor has ten minutes to give you the terminal diagnosis, much less discuss all the fine point. You might even be told to check in online through a 'patient portal' to find out about that.
As always, excellent information.
I don't want food, drink or trach. ALS is something I can't life with.
Hopefully you live in a country or a state that has Death With Dignity Laws. My greatest wish for you is you can exercise your autonomy what ever you decide. Best wishes, my friend,
@tundrawomansays694 I am on a modest SS income. I am not going to leave my beloved husband in debt.
I have a friend whose mother had planned out and paid for every step of her after-death care, to include the embalming, the casket, the train ticket to transport her body from FL to NY, the burial plot and the burial service. There is no kinder thing one can do than to ease the burden for those left behind. I'm trying to figure my own plans out, but aquamation is not yet available here in MD, though it is legal.
Thank you, Julie. I wish my husband would be able to do this. I started noticing something was off about 4 years ago but couldn’t get him to go to a neurologist until last October. By that time , he was diagnosed with FTD and a large part of his frontal lobe had deteriorated. Now it’s too late because he wouldn’t be able to fully let me know. We are 69 years old and never expected this. I’m going to make plans so my kids are not in this position!
SERIOUS QUESTION: Since all of life itself is ultimately meaningless in the grand scheme of things, (all life on and from this Earth, real and artificial, will be no more one day), why cannot society allow people to end their own life if they and they alone choose to do so?
There’s the rub, my friend. I fighting in my own state to get Death With Dignity Law passed. When people actually *have* the option to do so, many will get the medication but never use it. I think it’s kind of a sense of security knowing you *do* have this option.
@@tundrawomansays694 Thank you for responding and for what you are trying to do. Sure, some people want quantity of life (to live as long as possible regardless of the cost), but others choose to have quality of life (when quality of life gets too low, they see no real reason to keep going on suffering.) I believe people should have the choice, it's their own life isn't it, nobody else's. Nobody asked to be born, people should have a choice as to when to leave this existence. Otherwise, society should pick up all the costs of keeping someone alive whom does not want to stay alive. Why should a person pay to stay alive whom does not want to stay alive?
Yes we need to allow people a peaceful exit option! If nothing else other than to give peace of mind that the option is there. Life would feel much less stressful
@@Rosie-xm7ry The way I currently see it is that at a minimum, at least for adults, especially retired adults. Even if a person lived throughout all of future eternity minus one day (figure of speech), (and we are a long way away from that), they would still exit the living one day from something. But why should a person suffer for all of future eternity minus one day much less suffer throughout all of future eternity? What for? Just to be able to say that life itself has ultimate eternal meaning and purpose, even if it is only eternal suffering? And whether a person and life itself ended today or one day in future eternity minus one day, wouldn't the ending of all of life itself still be the same? Only if at least one single entity truly existed throughout all of future eternity could life itself even potentially have eternal meaning and purpose throughout all of future eternity. And while many humans appear to have apparent fairy tale beliefs, they appear to be just that, fairy tale beliefs, it appears that it is because they cannot deal with real reality. Life itself ends.
Thanks Julie
So informative and so true😊😊😊
God bless you nurse Julie ❤ 🙏🏼
Nurse Julie,
I have leanred so much from you already. It makes it much easier to grow older while I am still healthy. Thank you
We have also had meetings with our adult children and the hospice bereavement counselor. We wanted to be sure we are all on the same page and the kids know about support services for themselves.
Yes, we cry, but it is helpful crying. Like popping a zit ot lancing a boil
Thank you for your informative videos. You helped me prepare for my mothers passing a few weeks ago.
My respect to Julie for saying die, died, death, dying, and dead. As opposed to passed on, passed away, or passed. The former are not dirty words and they are not disrespectful. I don't know why we have so much trouble saying them in the modern age.
i completely agree. my family hates to read all this'passed on' euphemisms for death. As such when my mother died we wrote in her obit that 'she died' on January 19th, 2021. This is what she/we wanted to say!!
@@Sarah1212mm There's nothing wrong with that. Respect to you, your family, and your mother for not bowing to unnecessary political correctness, which is exactly what passed away, passed on, etc. are.
Thanks for this! I tell people we plan for a birth and things that may come up, death is the same kind of situation. Also Julie Ive had to address ahead of time with people the possibility that the hospice pt could have a heart attack or stroke and that hospice will take care of that as well....
My dad claimed over and over that he would never die. He died.
they say energy never does
Dying of a UTI is painful. How do you know your loved ones who have no healthcare training will make sure you are “comfortable” as you’re in pain and dying.
You are so right Julie. My Mom’s death experience was horrific because we had no instructions, directions and verbal communication was not an object. I had to make the decision. Worst 13 days of my life. I wonder if Mom approved my decisions.
Thank you.
Question re UTI antibiotics - I was recently told that UTIs were the exception to no antibiotics because that is more of a quality of life rather than an ending of life decision. Will you please expand more on that?
To some degree it is an ending of Life decision for UTIs. If a UTI is not treated you are more than likely become septic going to septic shock and then your organs will start failing. People have died from UTIs that weren't treated . I have had sepsis four times in my life twice I almost died. My problem is with the UTI I don't get symptoms so by the time I notice anything's wrong I'm already septic. I also worked as a nurse for 45 years and have seen patients with UTIs that aren't treated that have died
More great advice! Thank you
My Mom didn't say anything when she couldn't eat anymore. Even though we asked her. She lived still in her own home bcuz she didn't want a nursing home. She went in the hospital with obstruction of her bowels, lost alot of weight. She died at 96 yrs old in hospice.
My mother lived with dementia for 17 years and eventually died of sepsis, not dementia.
My mother "lived" with dementia but it wasn't really "living". She was unrecognizable.
Julie I just died in your arms tonight it must’ve been something you said ❤❤❤❤❤❤❤❤❤❤
Thank you. I have written down a statement wich I have given to my doctor. Bit you mention more items which I have to consider. I will make a new statement and discuss it with my family. I live in the Netherlands in which euthanasia is permitted only with 2 more scandoctors beside your own doctor.
Thank you. I have written a lot down and have spoken about it with my doctor. I live in the Netherlands and the law permits euthanasia if scandoctors have given an extra permission. But you give me more items to think about whether I want a treatment or not.
My mother was euthanized in hospice in Oregon in March. Many dementia patients are killed with palliative sedation. This is completely illegal in the U.S. IT is also medicare fraud.
What if no one cares about you, like my family, they could care less. My mother is 93, lives in Cocoa, Fl, with my abusive brother. I live on the west coast of Florida across the State. My own health and transportation limits me. My sister lives closer to my mother and does not want any thing to do with her, she was the one who made the arrangements and talked her into moving there, My sister 2 years ago was suppose to be making arrangments for assisted living for her. I feel like my hands are tied, my sister is the listed caregiver. My brother cut off all contact with her.
You have beautiful nails today. Very nice with the lightely tanned hands.
Yes. I wanna feeding tube.
even if you are terminal?
@@madlonglenn8743
Yes! I’m finished when God says so.
@@darrellhicks360What if God thinks you should be on a diet?! Besides, you weren’t born with an external feeding tube.
Upon definite diagnosis, I would tell my doctor to arrange for Medical Aid In Dying (MAID), and if he/she won't do it, find a doctor who can.
Many states don’t allow MAID for dementia
My mother had an advanced directive signed stating that she did not want a feeding tube. The doctors completely ignored it. She ended up with feeding tube, catheters (urine and bowel) ventilator and soon after a tracheotomy. What good is an advanced directive if doctors don't abide by it?
You should have told the doctors that you have engaged the services of another professional...a lawyer. Then watch the doctors suddenly say "Oh right. The advanced directive"
My mother has dementia and has begun eating very little. A couple of bites, and she says she's full and will refuse to eat more. 😢
I think we all should live together and just pool some resources together and go live life heck we could travel 2 times and eat what we want because we forgot we all are sick. ❤❤🎉😢😅❤
My mom I believe is in stage 6 with dementia. She’s in total denial. She can barely walk and completely incontinence. She will not seek medical care nor discuss her conditions . I’m truly at a loss for words . I have no idea what she wants 😢
Is it painful to starve to death if you can’t feed yourself?
Thank you, it was a good result
I have medical power attorney, living will and I am a organ.donor and have beneficiaries on my bank accounts.
I rescinded my organ donation as my unvaccinated sons are not eligible for organs. Talk about hypocrisy!! 🙄
Oh Julie i had a nurse girlfriend 20 years ago that died in my arms at 49 in 04 😢i miss u Whitby harden ❤rip glad u didn't do threw demnchia
And what if you have literally no family? There will be no one to care for me and i have no money.....
When does hospice come in a dementia case?
I was just diagnosed with early onset dementia.
I think you mean "onset".
You are correct thanks @@Moo2oob
How far along should u be in any illness ? I have heart problems as well as liver disease and a tumor on my kidney and diabetes over weight smoker and the illnesses go on forever it’s crazy why I am still here. So do you have any advice as well as I have no family and friends that are to busy and itff so ok I get that but I am afraid I am going to have a stroke due to the living space in which I live.!😢very stressful I can’t even really leave my house I am not able to walk so now I am in a wheelchair life feels and is very limited. 😢
This is a very difficult subject. Is it me or is Alzheimer’s and Dementia much more prevalent?
All I have are folks, hands out palms up! Ca-Ching!
What about Family Care Homes? Some will take dementia patients.
Treat me for infections.
Tell that to your family.
@@DiRay62
No problem. I got a tattoo 🤣🤣🤣
I’m a lawyer. I’m set!!
i have been septic, i would want more than tylenol!!!
What was it like?
Does an Advanced Directive need witnesses, a lawyer to achieve?
Feed me! Water me!
Intubate for sure
When you close your eyes you go to heaven or hell . Choose Jesus Christ before you pass . 🙏
@@hippiegirl5167 Please keep your religious beliefs to yourself.
God created man in his own image, one of the most violent and cruel animals on the face of the earth. Think about that before you agree to “see God” after you die.
We have an IPOST behind the front door for my husband and I carry a copy in my purse. My mom has hers on her fridge.
As healthcare providers, we see what happens to the “do everything” crowd. It isn’t pretty
An IPOST is the Iowa version of the POLST
Hi @julie
Thank you.