How Dying Looks In Dementia With Hospice Nurse Julie
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- เผยแพร่เมื่อ 11 พ.ค. 2024
- 🌟 Excited to welcome the inspiring Hospice Nurse Julie to our channel! With over 1.4 million followers, Julie is a trailblazer in transforming how we perceive death and dying. Today, we dive deep into understanding end-of-life care, particularly for those with dementia. Julie shares invaluable insights on hospice vs. palliative care, helping demystify the often-confusing aspects and what to expect as a caregiver when your loved one is nearing the end. 🕊️
📚 Exciting news! Julie's upcoming book "Nothing to Fear: Demystifying Death to Live More Fully" is available for preorder! Get a sneak peek into her profound knowledge and personal experiences that could change your views on end-of-life care. Link below! 📖
Julie also addresses the critical distinctions between palliative and hospice care, shedding light on the unique challenges dementia patients and their families face. Her perspective is not only enlightening but also deeply comforting to those fearing the unknowns of death.
Be sure to leave your thoughts and questions in the comments below. Your engagement helps us reach and support more Careblazers like you.
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🔗 Preorder Julie's Book: www.hospicenursejulie.com/book
🔗 Follow Julie on Social Media: / @hospicenursejulie
🎬 Watch Next:
Differences between Hospice Care vs Palliative Care: • Differences between Ho...
End of Life Dementia Hospice Care: • End of Life Dementia H...
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In case you haven’t met me, my name is Natali Edmonds and I am a board certified geropsychologist. That means that I am a clinical psychologist who specializes in working with older adults. One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
#careblazer #dementia #dementiacare
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🔗 Preorder Hospice Nurse Julie's Book: www.hospicenursejulie.com/book
Check out the videos mentioned here:
Differences between Hospice Care vs Palliative Care: th-cam.com/video/hM47CUeDtmE/w-d-xo.htmlsi=JCZT1r-F2D1skf5s
End of Life Dementia Hospice Care: th-cam.com/video/z6z_QNckcHI/w-d-xo.htmlsi=wD5JbbV1q_0fp3jc
My mom passed this past January of dementia. I have followed this channel for many years and Dr Natali was a life saver for me in my care journey. As we neared the end I started to realize that I was unprepared for her death and I had a lot of questions that no one talks about. I happen across Hospice Nurse Julie and she helped me prepare as best I could for the end of her life. I thought it was really helpfully for me to see her videos of actual end stage breathing patterns and other end of life videos. I strongly believe this topic needs to talked about more. It truly helped me navigate the last month with a little more comfort.
Sending you so much love 💖
Hi Dr. . I hereby wish to thank you for your videos and information. It helped me taking care of my wife threw her sickness of alzheimers . I cared for her for six years. She passed away on the 30th April 2024 and you helped me so much . Thank you thank you.
Be Blessed
Hans
South Africa
Sending you so much love. Thank you for being there for your wife when she needed you most.
I needed to hear this right at this moment. I took my mom to the ER yesterday. She was admitted overnight for aspiration pneumonia. As I was typing to find a video to help with my thoughts of "what now"? Then you guys popped up! Thank you Dr. Natali and Hospice Nurse Julie
Sending you so much love 💖
100% times a million!!!
Hospice Nurse Julie's videos are exemplary. I am new to caregiving and she explains things so well. She is a great teacher and comfort, and she puts into words what is difficult to talk about.
Thank you so much 💕
I don't know what my family would have done without my dad's hospice service. He went on hospice(Alzheimer's) about 10 months before his passing(he was recertified after the first 6 months). He was already in a skilled nursing facility, but the added support and care my parents and family received from hospice was beyond anything I ever expected. They were all so warm and genuine and truly guided us through his last few months of life. Even though his facility was wonderful, the 2x weekly extra nursing visits gave us so much more peace of mind. They called us with updates, checked in with us and were so caring. The chaplain not only visited them each week, but he continued to come see my mom every week for a full year after Dad's death. My mom is now in her own later stages of dementia. I certainly don't want to hasten her decline, but I have to say, I am looking forward to her having the extra hospice support once she qualifies.
I live in the Uk my husband in early stage dementia it’s bad for the carer I have not seen a nurse since the first visit thought I would see her and get more help but I understand how busy they are The problems are the same here Thank goodness we have you two nurses Bless you ❤️🙏
I actually look forward each Wednesday for her Live at Five. I am just a regular person looking for education before I need to know.
Yay! Thank you 🥰🥰🥰
This has been really helpful. We have been trying to get a palliative team for my mother but there is so much resistance and it's more like just reactionary medicine rather than instituting an actual plan. It's extremely frustrating and as a very tired caregiver I wish there were a better system to help families with this. Thank you both for the work that you do and the information and support you offer.
Thank you so much for this video!! More people need to be educated on this! Death is a part of life that will happen to all of us… nobody wants to talk about it. Thank you for sharing this content.
Hospice nurse Julie Videos have been so helpful to our family.
I’ve been watching her because my mother in law has dementia and I’ve been watching her videos and careblazer videos for over a year. One month yesterday my mom died. She was at dinner with us on march 11th and had to leave because she felt sick. She was put on hospice march 20. She does April 11. The things she went through would have been so co fusing and misleading and scary during that process. But we were prepared and just witnessed what nurse Julie had already prepared us for.
Wonderful video!!! One thing I was told while my mom was on hospice, that hearing was the last thing to go and I was encouraged to continue talking to her, read passages from the Bible, and express how much she’s loved❤️❤️❤️❤️❤️❤️
my mother was diagnosed with Alzheimer's Disease in 2017 though she clearly had multiple manifestations for many years prior to diagnoses. i moved her into my home in 2017 and, with a lot of support, cared for her until she passed. we palliated her at home last month and it was quite an amazing and peaceful process. i am so grateful she did not have to leave home for her dying and death.
Bless you for providing this wonderful, loving gift to your mother!
I HATE THIS. But I know this knowledge is so necessary for whats coming. Thank y'all for putting this together.
This was wonderful! Please keep educating us caregivers. Thank you both kindly
She is amazing and helped me all the way to my spouse’s death. We truly do not need to be afraid.
My Mum died of dementia or with dementia last Tuesday at the age of 89. I watched the TH-cam channels of both you beautiful professionals. They helped me with supporting Mum with her Alzheimers and understand the dying process. So I was informed for her living and her dying. It made me much more confident and understanding.
Hospice Nurse Julie is THE BEST OF THE BEST. She educates and teaches us NOT TO BE AFRAID of death and what happens when a person is dying (what to expect).
This is so important !!!
People just don’t know
The knowledge is key❤️
Keep on keeping on😊
Great video. I just put my Mom on Hospice a few days ago.
I really appreciate the information in this video.
Knowledge is power. The knowledge you two provide empower those of us who watch your videos, as we travel the death and dying process with our loved ones. What we learn makes the process less scary and, for me, actually made me confident in how I handled caring, and advocating, for my father. Thank you for what you do and what you share.
Dr. Natali, Thank you! Thank you! Thank you for having Hospice Nurse Julie cover such important topics! I have learned a great deal from her videos.
Talk about timing we are just starting the palliative care stage I’m ready to let her go but the grief is immense 😢
I would have appreciated a consult with my loved ones doctor at the start of their care and as they began their decline. Even though a nurse could as well explain care, having the doctor in a face to face would have been reassuring and shown that he was invested in our loved ones care. I am tired of the unavailability of doctors in a care setting when families are not getting answers from staff or their loved one is being affected by wait times for decisions from doctors. Answers are critical at times and our family has waited for weeks for staff to move through protocols to receive answers from our loved ones doctor.
I am so honored to have been holding my loved one's hand, talking with him as he left this earth.
Hospice Care was truly amazing.
Love you forever JMG❤
Now this really looks like to genuinely care about someone else that truly needs help thanks Julie and Nataly
I'm so glad I got the suggestion of this video. My mom was put on hospice in January and taken off in March. I tried to appeal but it was denied. She still needs extra support but won't get it until she gets weaker
This was a message I really needed today. Thank you both for the work you do and the knowledge you share. You are both a true blessing to this community!❤
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💯
I also say “When in doubt…Check it out”
Thank you for your video’s…Dr. Natalie and Nurse Julie. They are so informative.
Blessings to you! ❤
💕💕💕💕
Educating healthcare professionals is in big need. My mom has dementia. You have to be the patient's advocate. Thank you for the transparency and truth. Thank you!!!
Excellent information. My ex-husband went into Hospice care Sept. 2023. He is in a private memory care facility. He was diagnosed with Parkinson's dementia 2 years ago. He was diagnosed with psychosis, visual hallucinations. He became very volatile, aggressive, belligerent. His dementia changed his personality. There are MANY different kinds of dementia.
My husband is headed down this path of aggression and belligerent. Can you talk more about this Natalie.
Thank you so much for having nurse Julie as a guest. I have been subscribed to you both for quite some time. I have been through the dementia journey with my father, who has now passed, and am currently going through this awful disease with both my mother and mother-in-law. Here in the UK, I definitely feel that we don't discuss death or dying enough. As caregivers we are always so worried that we haven't done enough, aren't we? Julies questions to ourselves of "are they clean, safe and comfortable?" is going to be of great comfort to me going forward. Thank you Julie. I really needed to hear that. It will definitely bring me some peace along the way.🙂
Wow listening to this I’m so glad to be living in Australia your medical system sounds like a nightmare we still have a few hoops to jump through but once your in the system then they have to meet there outcomes
This happened to my husband going through dementia. He was on hospice and then taken off. It seemed he needed hospice more than ever. I was grateful he was in a wonderful facility that took up the care. Within two months he was back on hospice. And both hospice and the memory care facility made my husband very comfortable till he passed. Most people dread both but the truth is when you are facing dementia and dying hospice is there for you.
Going through this now. Hospice has been a blessing. I hope we can stay on it if need be. Very interesting to hear that patients decline if they get taken off hospice. Its good to be aware of this. Thank you for this information!
As a caregiver, you two are the sources I share with all of my families.
Wow, it's freakin' Hospice Nurse Julie for real!!!!
Thank you both for this great conversation. I love Hospice Nurse Julie!
Us too! 💖
My husband has been with hospice for 3 weeks today. Thank you for this video
The two ladies I watch often for helpful videos and valuable information. Thank you❤
Julie your the best and help me deal with dementia and death now I know what to look for
Big fan! Love Julie ❤❤❤
Both of you wonderful ladies jave enabled me to understand the processes of Dementia and Dying and what is natural and the best ways to manage situations.. my uncle has Dementia mid stage with CLL and varoius other health issues catheter causing many nasty infections... admittances to hospital... but at no time has anyone had a conversation about palliative or hospice care options... he is declining but still has decent quality of life... with these issues.. we know that anytime we could lose him.. both of youre unfaltering advice and information has enabled me to know when hes struggling..I know i will be able to ensure he has good end of life care.. so much love and thanks to you both ❤❤❤❤❤
Love nurse Julie!! Follow her always!
This is amazing ❤definitely every health care professional need to be trained with this information! Family members need to be their own advocate! Thank you
Excellent interview. Very informative and helpful. Its a very difficult situation to go through. This conversation helps in understanding what’s going on.
Commenting on about 17 minutes in when death is not the job in medical. I just want to share that my first experience with hospice was when my sister was dying of cancer in 1987. At that time it was 2 women who came to my home. The sole purpose was to discuss death. It was understood that medical doesnt deal with talking about death. It is maddening to hear and see that decades later it appears hospice has bern put under the umbrella of medical care and the original purpose doesnt exist. We had hospice for my mom who died very quickly in 2019 of a brain tumor. Hospice is medical care assist in dying. Like birthing a child, the events as natural life processes are controlled and interpreted through the medical model. It is beneficial at times to have the medical model but often the actual process of life events often is smoother and less hurried when and chaotic when fear and control are replaced with trust. I have long believed that a business built on induced fears become self limiting beliefs. I heard there are death doulas now?
Hola, your information on changing wet briefs during night is so informative. Thank you. I appreciate it
My husband has diffused brain atrophy and we are working with Johns Hopkins memory care to try and define what is actually causing this. I’m seeing him struggle more lately cognitively and trying to get support and care for him and support for me is just impossible to get. I feel so alone and isolated and when your heart is breaking watching your spouse leave you bit by bit and doing it alone is the hardest thing I’ve ever faced. I just don’t know how to do this though I’m trying to learn as much as I can so I feel I have some knowledge to face each day. So much needs to change so we aren’t so alone
Dr. Natali, you enunciate better than anyone I've ever met!
Thank you!
@@DementiaCareblazers Sorry to hear that your father passed. My 91-yr-old mother has advanced dementia (sleeps 23 hours a day, is bedbound, double-incontinent, spoonfed, and under hospice care for 15 months) and was given a week to live 3 months ago. It pains me to visit her (she hasn't known who I am for almost 2 years) and she acts scared when she wakes up and sees me. I don't see that she benefits from visits, but my 94-yr-old father insists I visit her frequently. My oldest brother stopped visiting her 2 years ago. Do you have a video on whether it's helpful to even visit advanced dementia relatives?
I can't emphasise how helpful this video is. Thank you both for being so clear, kind and generous with this important education.
Glad it was helpful!
Thank you for this. This is exactly where I am with my loved one, and I'm trying to learn what I can.
💖
Love Julie and how easy she explains the process, thank you for doing this video and would love any type of follow on with the both of you.
Glad it was helpful! 💖
Thankyou.
Love this video! Much needed!
Excellent! well stated on everything she said, so helpful in my situation with my my.
Love njrse Julie!
Thank you Dr Natalie for exposing us to Hospice nurse Julie. It is an eye-opener to those of us who do not know what to expect Dr. Natalie you are the best and m ost informative individual out there when it comes to dementia Thank You Regina
Excellent... I have been looking for this for months.... hard... but necessary
I LOVE your new hairdo!
This video is 100% spot on. This is everything I have experienced. My mom has vascular dementia and has a fantastic hospice care. I had a different experience when my dad was diagnosed with terminal cancer. Because he had a health maintenance organization (HMO) insurance, every decision needed a referral from his primary care. HMOs are truly cost saving focused and the all the boxes must be checked before moving the patient to the next level of care. Including having palliative and hospice care. He was finally transferred to hospice 4 weeks before he passed away. Once he finally got to hospice it was wonderful, but I wished I could have gotten my dad in palliative care as soon as he was diagnosed with terminal cancer.
Thanks!
Thank you for your support.
I am am LPN in a nursing home and i’m 68 i hate what we do to our elderly with dementia. how would i transition to a hospice nurse?
I was recently diagnosed with mild dementia. There is only one place I've found that deals with the patient themselves. So I follow y'all and appreciate all the info I get. What worries me morlst is the I have Medicare, but don't qualify for Medicaid. Doesn't seem like Medicare helps with anything in later stages. Am I wrong?
Who do I contact to get palliative care? Mine is temporary in patient at the nursing home for rehab from a fall. They can barely walk or speak and are incontinent, only eat pureed food, but hospice is strict about them being non verbal. The nursing home said nobody in my area accepts our insurance for home health care (smaller town) but we weren't wanting to permanently put into a facility.
I don't see the link for Julie's book on death and dying. Where can I find that?
🔗 Preorder Julie's Book: www.hospicenursejulie.com/book
About palliative care... be careful about this, especially if your loved one is in a facility. Fair or not, a lot of caregivers and medical staff in facilities *assume* that family members just want their loved one to die fast so that they can get their money. So, if you do ask, as I did, about palliative care (and hospice!), you are playing into that stereotype. Approach with caution. In my case, when I asked about palliative care, the doctor told me he'd call me back and then, he told the facility he didn't want to service me or my father as he has a problem with my morality. The facility then told me they would evict my father in 24 hours because the facility doctor would not treat my loved one. I had to BEG the facility admin, crying, not to evict. They only agreed when I offered to hire a care manager to interact with the doctor, instead of me, AND to give the doctor carte blanche to do as he saw fit without my approval or consultation.... JUST because in the first three minutes of meeting the doctor, I'd asked about palliative care. This probably won't happen to you.... but know that it might and know what people are assuming about caregivers -particularly ones who put their loved one in a facility and/or are much younger than the loved one.
Sorry that happened. I know even some good doctors don’t understand palliative care and hospice care and that is a real shame.
@@user-he4hh2bs7t Thank you. It is a shame. My father died 6 months and 2 weeks after the day I offended everyone by asking about palliative care and hospice. I swear, the Bible belt is decades behind the rest of the country.
Thank you for that information. I will be careful when I bring up the issue.
Do you need to pay to get someone on hospice
What stage do you enter hospice?
when a physician estimates a person has less than 6 months to live.
🧠Doc and HNJulie 🎯💝
Well intended efforts in this video & with this message, but we're ignoring the more common contributing root cause of death in those with Dementia ~ the systemic, abusive practice of chemical restraint by way of anti-psychotic medications that are scientifically considered to hasten cognitive decline and death. What version of dying is this applicable to? Or, the version of dying that those drugs "dumb down" people's cognitive capability? Is this the version of dying that those drugs result in increased falls? Or, the version of dying that those drugs increase immobilization, including the inability to feed themselves? Or, the version of dying that those drugs &/or immobilization cause weight loss? Or, the version of dying that causes an LO to sleep for 3 days straight vs the body's natural progression of being unconscious or the natural mechanism of making them sleep during the active dying phase (as described in this video)? These are the versions of death of a loved one with Dementia that is traumatizing. Hospice can be a useful resource that can be a blessing, but I've witness it much too often from within residential care facilities that it is used to alleviate "care" by the facility staff & a decision made in hast by a medical provider who sees the person in a state or condition at a moment of time without having awareness or context to the Dementia patient's journey of neglect and abuse in residential "care".
McFadden is my Grandmothers maiden name.
Sorry me again mum recently had pneumonia and our primary care doc said no more hospital for Anne now ( this was before mum was Ill) at the time of mum being so unwell it didn’t enter my head and got an ambulance but surly if someone is conscious and saying can’t breathe you can’t let her suffer? To me in that situation mum was suffering it was so clear she would have an awful death and that’s not something I want mum to go through
Spoke to mums other dr who said she needed to go to hospital and she’s not there yet but my husband was really pushing me leave mum at the respite home i said it’s hospital or home or I move in here. My husband who a fire fighter and pare medic ditto son said that your mum won’t ‘die quickly’ in his opinion he didn’t think I could cope because I have autoimmune things and get tired but I was there for my gran and coped and looking back that took days but gran was unconscious surely if your love one can express feeling awful you get help? I’ve already done a DNR as I know if it came to it without that being deceived in advance I would try to save her she’s my mum!
Sorry guys all to much info but am I right that dying shouldn’t be like the above and fully awake and suffering and telling me that? Would appreciate a response xxx
Medicare in America.🧐
Oh, dear. It's hospice nurse Julie. I'm going to be very honest. Her videos did as much harm to me and my loved one as they did good.... and that's if I am being generous to her. It saddens me to say that. I watched all of her videos and read everything she recommended to better prepare myself. And now that I have lived through it and seen death come to my demented father, I can stand on solid ground when I say, very firmly, take everything she says with a TABLESPOON of salt. She paints a very, VERY rosy picture of hospice services and the death process, IMHO. You are doing yourself and your loved one a disservice if you walk in with those expectations. The better homework is to find people in your location who have lived through it and asked them to tell you *everything*.... or better yet, to sit with you at the bedside and help guide you. Seriously. THOSE are the people who can prepare and help you... including helping you deal with hospice.
And finally, one more note about Julie... in this video, she says something false. She says she puts a trigger warning on all her videos that have real people dying in them. This is untrue. She used to put trigger warnings up but not anymore. I have left many comments asking her to do this. She doesn't. She's been reported to YT for this but still, the videos without triggers remain and she continues to make more without trigger warnings.
I agree, i am a speech path and worked with lots of terminal patients. There are vast differences in good hospice care and the complications that can arise. Terminal agitation happens way to frequently and hospice doesn't always come everytime you need them.
May you find peace
I have heard her say multiple times you can interview multiple hospice companies and even change companies. I have watched so many of the actual dying videos and she always has trigger warnings.
@@yvonnetitus8620 I'll try to look up the ones I've reported for you. No trigger warnings. Yes, almost all of what she says is not false.... but it's overly rosy! For example, interviewing multiple companies. You can interview all you like... BUT... some will only accept people with dementia at stage 7c and others at stage 7a... My father died at stage 7a. (My mother is about to die, too, at stage 7a.) So, you interview them and then, the patient must be evaluated. If they are denied, you are off again to search for another hospice. It'll take about a week. But let's say you get lucky and everything seems to be great. They are accepted and you like the company. Then, your loved one is actively dying. THIS is where you find out just how good they are. Oh, you LOVED the person you interviewed with... but they moved on from that company or aren't working that week or aren't on call... and the person you get, instead... Well. ON AND ON. You don't know what you'll get until you are living it. That's the kind of thing I mean when I say 'she paints it very rosy'. She assures you, "Oh, you can just interview with different hospices until you get one you like!"... and it's not false... but it's very misleading, also.
@@michele21auntiem And some hospice nurses recognize agitation and are quick to treat and some don't recognize it until it's severe. And you don't know who you'll get when you're in need. Same is true for the hospice doctor. Some are generous with the morphine.. and some are not.
Hola, your information on changing wet briefs during night is so informative. Thank you. I appreciate it
Hola, your information on changing wet briefs during night is so informative. Thank you. I appreciate it