Explore our Care Course for personalized support, live Q&As with dementia experts, and a supportive caregiver community: careblazers.com/for-families/ 🔗 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
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
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.
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.
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.
Praying the God of heaven and earth comforts you as you grieve the loss of your mum. Thankful you had these youtube videos to make your more confident and understanding in the end of life process.
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❤️❤️❤️❤️❤️❤️
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).
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.
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.
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 ❤️🙏
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
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❤
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.
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.
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!!!
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!
I was so proud of my adult son when he volunteered at a Hospice location. Not a lot of men do that. When his grandfather, a retired physician was actively dying, my son ended up "taking over" care for the whole family.
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.🙂
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.
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.
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!❤
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.
Our hospice nurse explained a lot of the signs to us so we wouldn’t worry. It helped tremendously to know things were normal. We were also concerned that the morphine she was getting was preventing mom from communicating to us. She explained it was a very tiny dose and was in no way interfering with it. She was just in the sleeping phase as you explain in your videos. It’s actually fascinating.
I’m envious of this care in the US. In the UK I’ve been caring for my wife for 10 years and had no effort from anyone in healthcare to help me. It’s literally 24 hour care. Hoisting, bathing, feeding, meds, toilet care…….never ending. If I ask they just say “ keep going , you’re doing really well”.🤷🏻♂️
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 so helpful. I am already a devoted follower of Julie, and I would encourage Julie to TALK to doctors about all of this! Accept those invitations to speak to doctors and other medical professionals because those of us with dementia patient family members are feeling so alone and forgotten by our doctors. Excellent video!!! Thank you both.
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 ❤❤❤❤❤
I started out as a Dementia Careblazer when my dear husband was still home, but sadly I had to move him to a Memory Care facility. He was eventually put on Hospice and then I found Hospice Nurse Julie. I 've learned so much but watching my Sweetheart go through this has still been so heartbreaking. God Bless all who are going through this...both the patients and their families.
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
I wish I had this information 5 years ago! Thank you for teaching about death and dying! I unfortunately had the home hospice from hell experience for my husband who had Early Onset Alzheimer's!
@@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?
Excellent interview. Very informative and helpful. Its a very difficult situation to go through. This conversation helps in understanding what’s going on.
Thank you for saying that it's hard to suggest hospice to the care team, but they don't want to suggest it either. Then I feel like it makes me seem impatient for my mom to die, if I want them treating her like she's dying soon. Thanks too for the reassurance that Medicare & her Tri-Care should cover hospice, as this whole group home/guardian/conservator thing is a pain & has not been covered by insurance! I'm an only child taking care of my mom, who I haven't lived with since age 10. We've had a close & caring relationship and I'm glad my life was open to take her in for her last good year. The research I'm doing now is therapeutic too, bless your hearts!
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
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
Being from New Orleans,La we have a different opinion of death and dying. It's a crossover from our world into the next... Not a good by, but see you on the other side. The stages one goes thru are as different as the individuals life. Thanks so much for the info.
When my mom was in hospital, i had to request my mother go into hospice. I was very discouraged with the lack of support through hospitals and rehabs when my mother was clearly deteriorating quickly from Alzheimer’s. Once on hospice, my mother passed 2 months later. Not all physicians or medical professionals will mention palliative or hospice care. You really at times have to advocate for your loved ones
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.
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?
Why didn't the use of antipsychotic drugs get covered here? And how these drugs are distributed in hospice and increased before death? When is it ever okay to give these dangerous drugs to dementia loved ones in hospice? In my mom's case, the hospice nurses were pushing her to be on those drugs right away, and I fought against it. My sister and I disagreed, and she was ultimately put on a drug (Seroquel, without my consent) that caused her to start screaming loudly and sporadically. She was not the same even after a low dosage of that drug. My mom's vitals were perfectly fine, yet she was put on hospice after a fall because she was too anxiety ridden to do the physical therapy, and too frail. In her last months and days, my sister and I endured her screaming loudly and calling out to her mother, a behavior that had started with an antipsychotic she was put on 3 months earlier. Even after being taken off that drug, the screaming continued (Seroquel stays in the system a long time and has dangerous side effects, also causing insomnia). The nurse also explained that she had to be put on another antipsychotic temporarily while she was withdrawing....absolute nightmare and they needed to abide by our wishes to wean her completely off of antipsychotics, not introduce another dangerous drug. The hospice nurse called mom's three months of screaming "terminal agitation". I call it irresponsible, unethical use of antipsychotics in the aged with dementia. In the final days in hospice, anytime my mom made a peep or seemed upset, the hospice nurse would come in and use a syringe to put drugs in her throat....they switched her to haldol. It was excruciating to watch. I understand the need to make her comfortable, but in the end it was these dangerous, black box drugs that stopped her heart, it was not a "natural death" you signed up for with hospice and palliative care. We asked the hospice nurses to allow us to give her cannabinoid gummies early in mom's hospice stay, but they would not allow it. I think there is an extremely limited tool kit available in hospice that pushes dangerous, inappropriate medications for those with dementia. The Black Box warning labels even say not to prescribe to persons who are elderly or with dementia! So why are hospice nurses across the US doing this? In Canada, there is already a big push to make the distribution of antipsychotics to elderly dementia patients illegal. Hospice nurses need to stop playing down the fact that these are dangerous drugs. Literally the day my mom went in hospice, I asked a nurse why she was recommending mom be put on haldol (for severe anxiety) and how concerned I was about the black box warning label. The nurses response was, "well she's dying anyway", to which I replied, "she is NOT yet actively dying, and is still having conversations and is very much alive." These hospice nurses are either misinformed themselves about the serious risks of these meds or are not being up front about it. When I asked questions about these drugs, I was accused by my sibling as being disrespectful to the hospice staff. My sibling would not allow me to bring up the meds or discuss them rationally. It was mind-boggling and maddening. I get it, quality of life and comfort is a big issue, but we need to rethink the use of antipsychotics in hospice for the elderly with dementia. Full stop.
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
I have two older siblings with dementia, my sister has vascular dementia and my brother has frontal temporal. He has been in a facility for over a year now, but my sister is still at home.
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.
Are you a resident or do you work there? I’m a bit confused. If you are a resident, you would need to request a hospice evaluation to see if you qualify for services. 🌸
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.
@@ElizabethCook-q5g 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.
@@Print229thank you for your comment. Sorry for your loss. I suspected Bible Belt based on your LO dr response. The judgment is so misdirected. But what they are doing is prolonging the agony.
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?
And keeping her from getting a UTI is a 24/7 job. And if you can't even come and do a lab on her every two two and a half weeks then I'm sorry that's pretty darned malicious if you ask me because I can't leave the house with her at home anymore and it takes two people to take her anywhere anymore
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".
Our entire health care system/structure blows so why should we expect progressive dementia care to happen? The problem as I see it is our government could care less about the elderly and or those who are not elderly but have diseases that affect mostly the elderly like dementia. It's like the govt taxing social security. It's a huge middle finger to those in our society young and old. We need better more equitable healthcare across the board and we need more comprehensive social benefits in general that do much more than just do the band aid treatment.🤨
Explore our Care Course for personalized support, live Q&As with dementia experts, and a supportive caregiver community:
careblazers.com/for-families/
🔗 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
Demystifying death is an insult to me. She shows the symptoms of physical death. Beyond death would be my department.
No Dept in any stupid hospital addresses the spiritual side
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!!!
Best to you & mom! ❤️❤️
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 💖
God comfort you.
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 💕
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.
Praying the God of heaven and earth comforts you as you grieve the loss of your mum. Thankful you had these youtube videos to make your more confident and understanding in the end of life process.
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❤️❤️❤️❤️❤️❤️
@@Paulohlsson7 very very well❤️
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).
She is amazing and helped me all the way to my spouse’s death. We truly do not need to be afraid.
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!
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.
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 🥰🥰🥰
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 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❤
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.
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.
This was wonderful! Please keep educating us caregivers. Thank you both kindly
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.
Now this really looks like to genuinely care about someone else that truly needs help thanks Julie and Nataly
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!!!
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!
I was so proud of my adult son when he volunteered at a Hospice location. Not a lot of men do that. When his grandfather, a retired physician was actively dying, my son ended up "taking over" care for the whole family.
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.🙂
Dr Natali and Hospice Nurse Julie, what a dream team you are.
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.
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.
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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💯
My husband has been with hospice for 3 weeks today. Thank you for this video
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.
As a caregiver, you two are the sources I share with all of my families.
I have dementia, C.O.P.D., and now cancer in lung, thank you from all of us, you are a blessing.❤❤❤
Praying the God of heaven and earth heals you and comforts you through this journey of illness.
I HATE THIS. But I know this knowledge is so necessary for whats coming. Thank y'all for putting this together.
I'm so happy I found nurse Julie.. she has helped me sooo much.. thank you Julie ❤❤️
Our hospice nurse explained a lot of the signs to us so we wouldn’t worry. It helped tremendously to know things were normal. We were also concerned that the morphine she was getting was preventing mom from communicating to us. She explained it was a very tiny dose and was in no way interfering with it. She was just in the sleeping phase as you explain in your videos. It’s actually fascinating.
I’m envious of this care in the US. In the UK I’ve been caring for my wife for 10 years and had no effort from anyone in healthcare to help me. It’s literally 24 hour care. Hoisting, bathing, feeding, meds, toilet care…….never ending. If I ask they just say “ keep going , you’re doing really well”.🤷🏻♂️
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
Great video. I just put my Mom on Hospice a few days ago.
I really appreciate the information in this video.
This was so helpful. I am already a devoted follower of Julie, and I would encourage Julie to TALK to doctors about all of this! Accept those invitations to speak to doctors and other medical professionals because those of us with dementia patient family members are feeling so alone and forgotten by our doctors. Excellent video!!! Thank you both.
This is so important !!!
People just don’t know
The knowledge is key❤️
Keep on keeping on😊
Thank you both for this great conversation. I love Hospice Nurse Julie!
Us too! 💖
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 ❤❤❤❤❤
Excellent topic from two esteemed professionals. Thank you! 🙏🏻
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!
I started out as a Dementia Careblazer when my dear husband was still home, but sadly I had to move him to a Memory Care facility. He was eventually put on Hospice and then I found Hospice Nurse Julie. I 've learned so much but watching my Sweetheart go through this has still been so heartbreaking. God Bless all who are going through this...both the patients and their families.
The two ladies I watch often for helpful videos and valuable information. Thank you❤
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! ❤
💕💕💕💕
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
Thank you for this. This is exactly where I am with my loved one, and I'm trying to learn what I can.
💖
I wish I had this information 5 years ago!
Thank you for teaching about death and dying!
I unfortunately had the home hospice from hell experience for my husband who had Early Onset Alzheimer's!
Talk about timing we are just starting the palliative care stage I’m ready to let her go but the grief is immense 😢
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?
Thanks!
Thank you for your support.
Love nurse Julie!! Follow her always!
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! 💖
Julie your the best and help me deal with dementia and death now I know what to look for
Excellent interview. Very informative and helpful. Its a very difficult situation to go through. This conversation helps in understanding what’s going on.
Thank you for saying that it's hard to suggest hospice to the care team, but they don't want to suggest it either. Then I feel like it makes me seem impatient for my mom to die, if I want them treating her like she's dying soon. Thanks too for the reassurance that Medicare & her Tri-Care should cover hospice, as this whole group home/guardian/conservator thing is a pain & has not been covered by insurance!
I'm an only child taking care of my mom, who I haven't lived with since age 10. We've had a close & caring relationship and I'm glad my life was open to take her in for her last good year. The research I'm doing now is therapeutic too, bless your hearts!
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
You 2 are a power team of leaders !! So great to see you together🥰
Excellent! well stated on everything she said, so helpful in my situation with my my.
Hola, your information on changing wet briefs during night is so informative. Thank you. I appreciate it
Excellent... I have been looking for this for months.... hard... but necessary
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
Being from New Orleans,La we have a different opinion of death and dying. It's a crossover from our world into the next... Not a good by, but see you on the other side. The stages one goes thru are as different as the individuals life. Thanks so much for the info.
When my mom was in hospital, i had to request my mother go into hospice. I was very discouraged with the lack of support through hospitals and rehabs when my mother was clearly deteriorating quickly from Alzheimer’s. Once on hospice, my mother passed 2 months later. Not all physicians or medical professionals will mention palliative or hospice care. You really at times have to advocate for your loved ones
Love this video! Much needed!
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.
Julie is the best!
Wow, it's freakin' Hospice Nurse Julie for real!!!!
She's amazing always!!!😊❤
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?
I watch your channel Julie!
Big fan! Love Julie ❤❤❤
Why didn't the use of antipsychotic drugs get covered here? And how these drugs are distributed in hospice and increased before death? When is it ever okay to give these dangerous drugs to dementia loved ones in hospice? In my mom's case, the hospice nurses were pushing her to be on those drugs right away, and I fought against it. My sister and I disagreed, and she was ultimately put on a drug (Seroquel, without my consent) that caused her to start screaming loudly and sporadically. She was not the same even after a low dosage of that drug. My mom's vitals were perfectly fine, yet she was put on hospice after a fall because she was too anxiety ridden to do the physical therapy, and too frail. In her last months and days, my sister and I endured her screaming loudly and calling out to her mother, a behavior that had started with an antipsychotic she was put on 3 months earlier. Even after being taken off that drug, the screaming continued (Seroquel stays in the system a long time and has dangerous side effects, also causing insomnia). The nurse also explained that she had to be put on another antipsychotic temporarily while she was withdrawing....absolute nightmare and they needed to abide by our wishes to wean her completely off of antipsychotics, not introduce another dangerous drug. The hospice nurse called mom's three months of screaming "terminal agitation". I call it irresponsible, unethical use of antipsychotics in the aged with dementia. In the final days in hospice, anytime my mom made a peep or seemed upset, the hospice nurse would come in and use a syringe to put drugs in her throat....they switched her to haldol. It was excruciating to watch. I understand the need to make her comfortable, but in the end it was these dangerous, black box drugs that stopped her heart, it was not a "natural death" you signed up for with hospice and palliative care. We asked the hospice nurses to allow us to give her cannabinoid gummies early in mom's hospice stay, but they would not allow it. I think there is an extremely limited tool kit available in hospice that pushes dangerous, inappropriate medications for those with dementia. The Black Box warning labels even say not to prescribe to persons who are elderly or with dementia! So why are hospice nurses across the US doing this? In Canada, there is already a big push to make the distribution of antipsychotics to elderly dementia patients illegal. Hospice nurses need to stop playing down the fact that these are dangerous drugs. Literally the day my mom went in hospice, I asked a nurse why she was recommending mom be put on haldol (for severe anxiety) and how concerned I was about the black box warning label. The nurses response was, "well she's dying anyway", to which I replied, "she is NOT yet actively dying, and is still having conversations and is very much alive." These hospice nurses are either misinformed themselves about the serious risks of these meds or are not being up front about it. When I asked questions about these drugs, I was accused by my sibling as being disrespectful to the hospice staff. My sibling would not allow me to bring up the meds or discuss them rationally. It was mind-boggling and maddening. I get it, quality of life and comfort is a big issue, but we need to rethink the use of antipsychotics in hospice for the elderly with dementia. Full stop.
Thankyou.
Thank you.
Love njrse Julie!
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
I have two older siblings with dementia, my sister has vascular dementia and my brother has frontal temporal. He has been in a facility for over a year now, but my sister is still at home.
Thanks
Excellent!
I LOVE your new hairdo!
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 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?
Are you a resident or do you work there? I’m a bit confused. If you are a resident, you would need to request a hospice evaluation to see if you qualify for services. 🌸
Check out QSP , qualified service provider in your state . New program , just getting started .
Love from Roundup, Montana
I have dementia and I am worried that no one will care for me. I have no young people in my family nearby.
Most importantly talk to your physician and request resources asap. 🌸
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.
@@ElizabethCook-q5g 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.
@@Print229thank you for your comment. Sorry for your loss. I suspected Bible Belt based on your LO dr response. The judgment is so misdirected. But what they are doing is prolonging the agony.
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?
Medicare will cover all expenses of hospice including medications and any personal supplies needed.
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
We don't even get help assessing if there is a UTI
What stage do you enter hospice?
when a physician estimates a person has less than 6 months to live.
Do you need to pay to get someone on hospice
No
Is this Tricia from life after death?
McFadden is my Grandmothers maiden name.
And keeping her from getting a UTI is a 24/7 job. And if you can't even come and do a lab on her every two two and a half weeks then I'm sorry that's pretty darned malicious if you ask me because I can't leave the house with her at home anymore and it takes two people to take her anywhere anymore
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".
Our entire health care system/structure blows so why should we expect progressive dementia care to happen? The problem as I see it is our government could care less about the elderly and or those who are not elderly but have diseases that affect mostly the elderly like dementia.
It's like the govt taxing social security. It's a huge middle finger to those in our society young and old. We need better more equitable healthcare across the board and we need more comprehensive social benefits in general that do much more than just do the band aid treatment.🤨
🧠Doc and HNJulie 🎯💝
Medicare in America.🧐