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: ruclips.net/video/hM47CUeDtmE/видео.htmlsi=JCZT1r-F2D1skf5s End of Life Dementia Hospice Care: ruclips.net/video/z6z_QNckcHI/видео.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.
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.
My Mum died of dementia or with dementia last Tuesday at the age of 89. I watched the RUclips 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.
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❤️❤️❤️❤️❤️❤️
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 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.
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.
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 ❤️🙏
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.
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!❤
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 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❤
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’ve been watching Julie’s videos for a long time, and I love them. As I manage my mom’s journey through dementia, it’s really helped make me more comfortable with the entire process.
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
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.🙂
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!!!
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.
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!
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'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
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.
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
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.
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.
Excellent interview. Very informative and helpful. Its a very difficult situation to go through. This conversation helps in understanding what’s going on.
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”.🤷🏻♂️
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
@@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 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.
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!
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
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!
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.
I don’t know where to begin. Sometimes,especially,think I am in need of at least palliative care. I have so many chronic illnesses and acute right now. The really extra odd element , I was a hospice nurse for 3 years. I loved it and I loved the care factor and most treatment were not uncomfortable. All that to say I have a surface extreme physical changes. I’ve read I FEEL IT & see it. There are so many specialist that make of course,even want to explore a notebook/workbook to assist with the process. The purpose of my text to you, it’s me now. I desperately need an advocate even as an antiquated RN. You are ending now and I can’t correct format or extent. I have uncontrolled diabetes gum infection
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.
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
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.
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.
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?
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’ve asked nurse Julie a few weeks ago, (she’s so busy) a question about why 2 Hospice nurses came by twice and really really pushed to put my husband on Hospice. He’s walking w walker, sees PT at home, decent memory, good eater, minimal meds. They kept insisting. Free diapers, wipes, no more 911…they never mentioned palliative care. I’m guessing palliative care at this stage (he’s 86) I’d appreciate any information Bless you both
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.
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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: ruclips.net/video/hM47CUeDtmE/видео.htmlsi=JCZT1r-F2D1skf5s
End of Life Dementia Hospice Care: ruclips.net/video/z6z_QNckcHI/видео.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 💕
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.
My Mum died of dementia or with dementia last Tuesday at the age of 89. I watched the RUclips 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.
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❤️
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 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.
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.
Bless you for providing this wonderful, loving gift to your mother!
She is amazing and helped me all the way to my spouse’s death. We truly do not need to be afraid.
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 ❤️🙏
This was wonderful! Please keep educating us caregivers. Thank you both kindly
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 🥰🥰🥰
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.
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.
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!❤
💖
💯
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 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
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’ve been watching Julie’s videos for a long time, and I love them. As I manage my mom’s journey through dementia, it’s really helped make me more comfortable with the entire process.
I'm so happy I found nurse Julie.. she has helped me sooo much.. thank you Julie ❤❤️
This is so important !!!
People just don’t know
The knowledge is key❤️
Keep on keeping on😊
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.
Dr Natali and Hospice Nurse Julie, what a dream team you are.
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.
Thank you both for this great conversation. I love Hospice Nurse Julie!
Us too! 💖
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.🙂
Great video. I just put my Mom on Hospice a few days ago.
I really appreciate the information in this video.
My husband has been with hospice for 3 weeks today. Thank you for this video
Excellent topic from two esteemed professionals. Thank 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!!!
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.
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.
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 ❤❤❤❤❤
We need this... , so grateful, for you ladies.
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
The two ladies I watch often for helpful videos and valuable information. Thank you❤
We ❤ Nurse Julie!
I HATE THIS. But I know this knowledge is so necessary for whats coming. Thank y'all for putting this together.
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.
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
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.
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!
Thanks!
Thank you for your support.
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! ❤
💕💕💕💕
You 2 are a power team of leaders !! So great to see you together🥰
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! 💖
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.
Excellent interview. Very informative and helpful. Its a very difficult situation to go through. This conversation helps in understanding what’s going on.
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”.🤷🏻♂️
Love nurse Julie!! Follow her always!
Thank you Julie
Thank you for this. This is exactly where I am with my loved one, and I'm trying to learn what I can.
💖
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
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?
Julie your the best and help me deal with dementia and death now I know what to look for
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.
Love this video! Much needed!
She's amazing always!!!😊❤
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!
Excellent! well stated on everything she said, so helpful in my situation with my my.
Big fan! Love Julie ❤❤❤
Julie is the best!
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
I watch your channel Julie!
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!
Talk about timing we are just starting the palliative care stage I’m ready to let her go but the grief is immense 😢
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
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.
I don’t know where to begin. Sometimes,especially,think I am in need of at least palliative care. I have so many chronic illnesses and acute right now. The really extra odd element , I was a hospice nurse for 3 years. I loved it and I loved the care factor and most treatment were not uncomfortable. All that to say I have a surface extreme physical changes. I’ve read I FEEL IT & see it. There are so many specialist that make of course,even want to explore a notebook/workbook to assist with the process. The purpose of my text to you, it’s me now. I desperately need an advocate even as an antiquated RN. You are ending now and I can’t correct format or extent. I have uncontrolled diabetes gum infection
Thank you.
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.
Thanks
Excellent!
Thankyou.
Love njrse Julie!
Wow, it's freakin' Hospice Nurse Julie for real!!!!
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
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.
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.
I LOVE your new hairdo!
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?
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
Love from Roundup, Montana
I’ve asked nurse Julie a few weeks ago, (she’s so busy) a question about why 2 Hospice nurses came by twice and really really pushed to put my husband on Hospice. He’s walking w walker, sees PT at home, decent memory, good eater, minimal meds.
They kept insisting. Free diapers, wipes, no more 911…they never mentioned palliative care.
I’m guessing palliative care at this stage (he’s 86)
I’d appreciate any information
Bless you both
We don't even get help assessing if there is a UTI
My mom is currently in a nursing home with severe dementia. They do not control her pain at all. Is she able to get palliative care in a nursing home?
My grandma passed several months ago from dementia
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. 🌸
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.
Tidewell in Venice was aggressive and did not call us all night
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
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