My dad died of ALS. He didn’t want hospice. His doctor finally talked him into it. He had hospice for one day and passed away. I wish he had allowed hospice much sooner… even just for my mom’s sake. Thanks for keeping it real. ALS is horrific.
@Carnicrazy
Жыл бұрын
It is horrific. I'm so sorry for your loss.
@Debra_Hasatheory
Жыл бұрын
So sorry for your loss.
@texasbandera7320
Жыл бұрын
Could you talk about the end of life with Parkinson’s?
@kelly-annejenner486
Жыл бұрын
Mandy my mum also died from this but she passed over in hospital as she’d gone in to have a tracheotomy, thankfully at the end she was sedated and relaxed. I was only 15 at the time so had never experienced death before and I totally agree now that people knowing what to expect is a really good thing because there’s so many changes on the transition and they can be really scary. Thank you Julie for doing this and helping to educate people xx
@Cwgrlup
Жыл бұрын
Nurse here. The average patient has only 7 days on hospice before they die: this is due to our health care system and patients who fear the dying process. Julie is doing a great job at helping educate people so we are a society more comfortable with death.
@brittanylevinson741
Жыл бұрын
Julie, I want to send you the deepest thanks for your videos. My dad died two years ago last week and I was truly traumatized by something that happened during his hospice care until I saw your video a few months ago. I was angry, I felt helpless, I felt deep regret and this uncontrollable angst because of it. I felt he had been mistreated deliberately. When I finally saw your video on giving fluids during hospice, I was able to truly work through those feelings I had that were based in emotion and ignorance. Your videos have allowed me to move on to truly grieving the loss of my father instead of being tangled up in how he died. I’m still actively grieving and I’m not sure when that will get easier but I wanted to thank you from the bottom of my heart for the gift you gave me, a total stranger.
@kellymarsh3956
Жыл бұрын
Brittany Levinson,. I'm so sorry you went through that. Hospice or who ever was caring for him should have explained things to you.
@lnl3237
Жыл бұрын
You still are such a devoted daughter. Your father must've have been a remarkable human being. Truly sorry for the anguish you endured.
@carolinejohn4537
Жыл бұрын
Bless you, I truly hope you can now complete your grieving process and learn celebrate his whole life and not the way it ended. One day at a time friend.
@karrahanley3641
Жыл бұрын
I think it would b great if as family members who r there with our loved ones who r ready to cross over were educated by the staff as of what to expect it would help us to understand the prosses, instead we r left with anger n questions, Julie has been a blessin to sooo many ppl.. I hope u feel a little bit of peace now Brittany, with time things will become a little easier, just know ur dad watches over u, i wish u love n light as u go through ur journey in life 💜💛💜
@jazzvibe8756
Жыл бұрын
My Grandma passed with ALS. It is a truly slow horrific way to die.
@miriamcarpenter3168
Жыл бұрын
As a former hospice nurse, an ALS death is a particularly hard death. Very challenging for all. Praying this disease can be cured soon.
@michelemaliano7860
Жыл бұрын
My mom passed away today. Your videos helped me know what to expect and what was concerning. Hospice was a godsend. Mom went so quickly that hospice only made 4 visits; including the social worker and the initial evaluation. They were so intuitive and compassionate. They know how to make themselves feel like family without being intrusive; a delicate balance. They were a godsend in a difficult time. Your videos helped to make less scary. Please keep making these. The reduced my fear, anxiety, and grief. I hope you touch others lives the way you’ve touched mine. So many thanks.
@one4blondes
Жыл бұрын
I'm so sorry for your loss. I hope you find comfort in your memories. My mom has been gone 5 years and I miss her everyday 😔
@brittanykimbrough9855
Жыл бұрын
Keeping you in my prayers and sorry so for your loss.
@leann5949
Жыл бұрын
So very sorry for your loss 💔🙏
@5DNRG
Жыл бұрын
God bless you...your Mom is with the angels.🌹💙
@lnl3237
Жыл бұрын
So terribly sorry. My mom died from end stage dementia and we, too, had wonderful end-of-life care. A God-send indeed. Get some rest tonight if you can.
@lesliefleming4359
Жыл бұрын
My mother died from ALS 10 or so years ago. Most devastating thing I’ve ever seen. She refused help with breathing at the end so they gave her more and more morphine in the hospital till she finally passed a couple days later. God bless her. There was just no way to help her. But I can still remember spending the last day in the hospital with her
@louisezaros1616
Жыл бұрын
cant imagine the fear.
@leewhite-graham753
Жыл бұрын
Dear Julie: You are a light helping us navigate through the dark passages of disease. My BIL died of ALS 17 months ago, during covid. He was only diagnosed 6 months earlier, however deterioration started before that. He was a brilliant engineer and professor, using his computer up until the week he passed. The last two months were hell for all of us. Thank God hospice came the last week, what a tremendous relief of support. Wish we knew about the smart board, but we are grateful that we were extra careful to keep him from being exposed to Covid on top of it. Even he couldn't believe he was dying, only 71. Horrible disease.
@MrsM714
Жыл бұрын
My husband passed from ALS last year and I wouldn't wish it on anyone. When I talk to people about ALS, I talk about how it affects the voluntary muscles and the diaphragm is a voluntary muscle. This is why people with ALS have trouble breathing and laying flat becomes impossible. ☹️ There's so much devastation with this disease, physically, emotionally and financially.
@southernsass2937
Жыл бұрын
Absolutely horrible to witness. Lost my Sister 3 years ago from this monster.
@domesticgoddess9969
Жыл бұрын
I’m so sorry. Lost my dad to it too.
@grandmanancy4719
Жыл бұрын
Ramee, I am sending prayers to you as you go through the grieving process.
@joannamaas6511
Жыл бұрын
I'm a hospice nurse too, and the worst/saddest death I ever had was a 33 year old woman with ALS who was mentally with it and refused to sign a DNR. I was just arriving to the home when she went into respiratory and then cardiac arrest and her husband insisted that I start CPR on her until rescue arrived. It took 10 minutes before they arrived, I was by myself as the spouse was beside himself as he became a widower. I wish he had just held her hand as she moved from this world to the next. I hate ALS even worse than Alzheimers, which is saying a LOT. Wouldn't wish it on my worst enemy.
@GardenerPhyl
Жыл бұрын
My Dad died of cancer in 1995. Six months later I kept vigil as my neighbour died of ALS. If I were to die of cancer I feel that I would be able to manage that. Should I be diagnosed with ALS I would absolutely make plans for MAID. No hesitation. Thank you for your informative videos, Julie. Replacing fear with knowledge is life altering.
@robbayless9529
Жыл бұрын
So true, I agree completely
@couturedeana
Жыл бұрын
What’s MAID?
@kt5229
Жыл бұрын
@@couturedeana Medical Assistance in Dying
@spiderlily4386
Жыл бұрын
@@couturedeana canada, i think
@carriehazel77
Жыл бұрын
I absolutely agree and I'm grateful I live somewhere where I would have that choice available to me should it be needed.
@czechmate6916
Жыл бұрын
I lost a cousin to ALS several years ago. It was a hard thing to watch her go through this. They got her a smart board but it was still was painful to see her like that. I had cancer and was able to beat it but this ALS is the worse way to die.
@brookelopez114
Жыл бұрын
Hi Julie my Dad passed of ALS and it took him so quick 9 months from diagnosis. My family and had to make a tough decision at the end put him on all kinds of breathing machines which would of given him maybe a month or two to live or make him comfortable with a shot of morphine and let him pass with dignity no one in my family wanted to decide and I actually told the Dr to give him the morphine because this disease is the worst disease I have ever seen and it ravaged my beautiful handsome amazing father. My family now is questioning the decision I made for my father but in my heart my dad was a proud man and wouldn’t want to be on machines especially if he was going to pass away soon. This happened 11 years ago. Julie did I do right by my dad he looked scared at the end when he passed I was holding his hand I was pregnant with my twin daughters I felt his soul go through me and my babies we jumping and rolling around my dad so badly wanted to see them born! Thank you Julie
@kelliewhyte_85
Жыл бұрын
You ABSOLUTELY did the right thing. And don't let anybody tell you otherwise.
@brookelopez114
Жыл бұрын
Thank you ❤
@lauriecailteux9451
Жыл бұрын
I totally understand what you’re saying. My dad died of ALS in 1966. They didn’t offer feeding tubes. When he finally passed after 2 1/2 years he weighed 68 pounds. I was only 16 when he passed but I remember everything like it was yesterday.
@nereidatabora5438
Жыл бұрын
😢
@carolinejohn4537
Жыл бұрын
Dear God, poor, poor man. Bless him, you and your family. Horrific way to pass but just a short part of his whole life, I hope you can celebrate and concentrate on all the years before the end.
@ShoJ369
Жыл бұрын
I know things have improved since 1966. I am so sorry your Father suffered, and for all of his family who witnessed it. 😢
@louisezaros1616
Жыл бұрын
awful. 😪
@domesticgoddess9969
Жыл бұрын
Oh I’m so sorry. That’s so awful. Lost my dad to als and even with a feeding tube he was a skeleton when he passed. It’s just awful no matter what. Know that he’s watching over you now❤
@misty4757
Жыл бұрын
My mother died from ALS. She was sick for a long time before actually being diagnosed by then it was already way to late and she died within 2 months of the actual diagnosis. It was awful watching her go from fairly good health to not being able to walk, talk, breathe on her own. I miss her so much.
@HollyPGH
Жыл бұрын
My grandpa passed from ALS in 1991. There is no other way to describe this disease but horrific. A death sentence for sure. So thankful that he had hospice care! They really helped to ease the anxiety of us family members, and most importantly, made sure grandpa was as comfortable as possible. You are an angel on earth and your work is a godsend. In his last hours, he was only taking 2 deep breaths a minute. ALS needs better treatments and a cure!
@Crazy_World888
Жыл бұрын
Thank you sooo much. I feared death so much it completely paralyzed me in life. I can not THANK YOU enough for stopping my fear. You are an angel 😇
@Libratarot
Жыл бұрын
Thank You. I wish I had found your posts just a little earlier. I cared for my sister till the end and my comfort was knowledge and her comfort was trust in me. After surviving Leiomyosarcoma, a type of rare cancer that grows in the smooth muscles; she started having 'brain fog'. After way too long she was finally diagnosed with Frontotemporal dementia language variant. Primary Progressive Aphasia was ultimately what she would get aggravated with the most. We put a lot of effort into visual boards till of course she then lost her sight and by that time homemade sign language was limited. A lot of drama at a facility that we eventually forcefully removed her from she came home and went on hospice and that Monday she spoke clearly 'I love you and that night she really did not show any signs of conscience. The hospice nurse was AWESOME and really comforted me with the knowledge I needed to send my sister, my friend, and my mentor on to a peaceful release. After all these years of being by her side during this decline and the sudden death of her husband; I just more knowledge like yours was more readable known to exist (if that makes sense). I spread the word when I can so, I guess I am just saying " Great job "
@janetbellini8065
Жыл бұрын
Thank you for this video Julie. I had a good friend who had ALS and eventually passed away. It was so hard to watch her slowly deteriorate. She didn't have hospice and was put in a nursing home until she could no longer breathe and was sent to a hospital where she died. Why would they let her suffer so much. She knew she was dying. I thought that it was so cruel to keep her alive like that. Couldn't she be put to sleep and die peacefully. She died after suffering for such a long time. It's so sad.
@djroberson13
Жыл бұрын
Julie, Thanks for covering ALS and the difficulties of this "Rare" disease. For many it's rare, however, I am #5 in my family to get ALS, we as a family have the C9orf72 gene, and it means that our children have a 50/50 chance of getting it, we don't consider it rare in our family. Definitely a SUPER hard Illness. My family owns the largest In-Home Care agency in the states of Washington and Oregon, therefore, I've a lot of experience with Hospice, because we frequently work hand in hand to serve the Client. I highly encourage folks with a terminal illness, to reach out to Hospice for initially Palliative care, to help get their Life in the best order possible prior to Hospice. Please take a segment and explain the unique differences between Palliative care and Hospice care for the good of this community. Bless you for Being There and helping make comfortable the wonderful human who is soon to pass through the veil.
@betterwiththeirish
Жыл бұрын
My aunt died of ALS. It was horrible to watch her deteriorate. She was able to pass at home with all of us around her ❤
@nancyarchibald9095
Жыл бұрын
My next door neighbor died of ALS. It was difficult to watch how quickly he progressed. He was not a kind person to his wife and grown sons . He even traumatized their dog. So when this disease presented his wife did all she could to make him comfortable. In the end I think she turned his 02 off and then she went to bed. Sad, but true. In the morning, he was gone. No hospice was involved. Your videos give so many the confidence and encouragement to get through the dying processes with their loved ones with comfort and dignity. Thank you 😊 for sharing your expertise.
@chelseybe1147
Жыл бұрын
Thank you for this. My Dad passed away from this disease. We tried to keep him home with us as long as we could, but it became dangerous. Our community didn’t have hospice at the time unfortunately… I truly wish we did after seeing your videos. I feel like his stay at the hospital was far more traumatic & stressful for him & his family than it would have been in hospice. Thank you for what you do.
@gregorycarlson6632
Жыл бұрын
My Dad died of ALS in 1992, and it was indeed horrific. I’m a semi retired Pastor and have worked in hospital Chaplaincy and as a hospice Chaplain, but all of that went out the window when it’s a loved one. Before he had to go on a respirator and feeding tube, he chose to stop eating and drinking so he could die before those things were necessary. He never said that’s what he was doing, but we knew ,and I would have done the same. His doctor put him on a morphine pump to ease his final days. Thanks for your video. It was spot on.
@jerrypetty9914
Жыл бұрын
My dear cousin recently passed after 4 yrs with ALS. He was 55. As soon as he was diagnosed, I called my 3 brothers and we flew to visit him for an extended weekend. We wanted to just love him and enjoy his company b4 this terrible illness took him.
@faymoussa9178
Жыл бұрын
My husband died from this horrific disease. He also had frontal lobe dementia which his doctor said it was a blessing. With time he was. Not knowing what was happening to him. I had him at home taking care of him and hospice was amazing towards the end. God bless you for what you do.
@59marguerite
Жыл бұрын
My husband died five years ago from Primary Progressive MS which behaves very much like ALS. He was very brave but I'm still traumatized.
@amyrivers4093
Жыл бұрын
I've just come home from my regular Tuesday day programme at hospice. I want to show gratitude to all the amazing staff and volunteers that make this day possible. We made sushi today and since I can't eat I made mine for the two ladies who make the other patients drinks, serving them morning tea and we ate the sushi for lunch but normally it's a hot meal. Hospice has so many inspirational, caring and kind people. It's where I go to live and possibly when it happens who will be with me when I'm called home. Thank you. Xx
@grandmanancy4719
Жыл бұрын
Prayers for you for the state of MO.
@amyrivers4093
Жыл бұрын
@@grandmanancy4719 thank you, your prayers are very much needed.
@anniemika6171
Жыл бұрын
My youngest sister just passed away with ALS. I wish she had you there. It’s a very difficult disease to watch. My heart goes out to all ALS families.
@southernsass2937
Жыл бұрын
You are 100% Right Julie. I watched this monster slowly take my Sister in just a year & a half after diagnosis. 😪 Another friend lasted 6 years ❤ Thank you for being here. What about degenerative scoliosis/ daily chronic pain. Have you ever had someone on hospice bc of this? Thank you 🤗
@alnjeanie
Жыл бұрын
Wow Julie, that shit sounds scary hard to treat people with it. God bless you lady Make it the best it could be for them.
@lindathompson9334
Жыл бұрын
Thank you for teaching about ALS. I know two people who had this terrible disease, and I'm glad to know hospice is able to help the patient with not being able to breathe. I see the Botox ads on TV and it has a little disclaimer at the bottom of the screen saying it may cause ALS, and I can't imagine tempting fate just to get rid of wrinkles.
@towritemichelle210
Жыл бұрын
Oh wow! I never noticed that. Thanks for pointing it out!!
@kellymarsh3956
Жыл бұрын
WHAT? Doctors tried for years to push Botox on me for migraines. Glad I never gave in.
@kellymarsh3956
Жыл бұрын
Linda Thompson: or migraines.
@bettyh3747
Жыл бұрын
💔 My Mom, Daughter, and now me... Thank you Hospice refused to care for my daughter then I swayed them. Thank you for the insight
@kathymontano1135
Жыл бұрын
My mom was diagnosed with this in 2020 before COVID shutdown. It progressed pretty fast. She chose hospice in August 2020. She lasted about a week. It was heartbreaking watching her go from someone who played bridge, bowled, traveled, and loved life to not be able to eat, drink, walk and breathe. Thank God for hospice. I saw her looking up passed us, reaching for someone, even kissing as if greeting relatives. I know she is at peace.
@lindap.p.1337
9 ай бұрын
My brother died in 2017 of ALS. He was a Christian Scientist and refused medical care. He decided he was curing himself with vitamins. He was in terrible shape and home alone during the daytime. Well, he fell and broke his hip. Two hours before hip surgery he passed. I felt is was a blessing. I think it took about 3 years for him to pass. He could not use his limbs but I did not know about breathing. I expect he had problems with that. Thank you for educating me. Linda from VA
@Meltog
Жыл бұрын
My high school sweetheart died from ALS a few years ago. We were together for 10 years. He was so energetic, goofy and sweet. He always made me laugh. It was heartbreaking to see what the disease had done to him. I felt blessed when he called me the night before he passed. A friend of ours from high school was with him and helped us communicate. I remember the breathing machine sounded like a freight train. I miss him, but I’m glad he’s at peace. Same subject but different person. How is it that Stephen Hawking had lived so long with ALS?
@carlawilliams5132
Жыл бұрын
And on another note you’re right why with so many people having ALS is there not more research being done… Thank you for bringing awareness out there to people about the fact of life death and dying we are all going to face it and some of us are going to have to do it worse than others but with knowledge people can do the best they can
@mupton2022
Жыл бұрын
Also a good book that describes ALS is Tuesdays with Mory.
@grandmanancy4719
Жыл бұрын
It just ordered the book from Walmart. Thank you.
@Maiwiew
Жыл бұрын
I lost my Dad to ALS in 99. My family would have been lost without our Hospice Nurse.
@janeparrish4945
Жыл бұрын
Most horrific death, lost my husband by ALS. Please do one on COPD found out 2 yrs ago I have it. BLESS YOU
@Truthtalker365
Жыл бұрын
What an excellent service you are providing to people who may not know what is involved in a hospice environment. I believe that all nurses are angels. You are clearly a very special angel. Sincere thanks.
@gingerrett1298
Жыл бұрын
I would like to hear about emphasima and COPD
@merb457
Жыл бұрын
Hi Julie, thank you so much for this series. Would you consider doing a video on me/cfs? It's not terminal and usually not a cause of death per se, but occasionally it is. It has ranges of severity so will likely look a bit different for everyone but if you've ever worked with this disease at end of life I'd be interested to know more (because the more you know, the less anxiety you have right??). I unfortunately have it and with covid people are developing me/cfs in greater and greater numbers. Thanks again for your videos
@arch3088
Жыл бұрын
Julie, you are an angel. I can see that your profession is very hard on you. My sister worked in hospice for many years and I saw the stress she endured. It takes a very special type of person to put themselves through that. She now works for the state inspecting home for the elderly.
@stevestarr6395
Жыл бұрын
Yes this is tough. I knew a man who had this and the first sign was muscle weakness in a leg he then progressed where he couldn’t do anything and was put on a ventilator until he crossed over. 😔
@sowelu66
Жыл бұрын
Thank You for creating this channel. This is very personal for me, Would you please share how MS Patients are cared for in Hospice?
@derickphillips8367
Жыл бұрын
My dad has this. From what he has told me the VA has told him, there are different forms of ALS. He has the form that started in his arms and just over 2 years he is fully wheelchair bound. We had a neighbor years ago the their son got ALS but his the the one that started in his tongue. Keep up the awesome work. Now off to find your video on the breathing stages due to a family member they took off the feeding tube. (Update) My family member did pass on last night at 1am.
@grandmanancy4719
Жыл бұрын
It is my understanding that there are two forms of ALS, limb onset and Bulbar. When my Mom started a garbled speech. we had no idea that ALS could start in the throat. She was the first in the family to get Bulbar ALS.
@derickphillips8367
Жыл бұрын
@@grandmanancy4719 I am sorry to hear that. Having the limb onset for my dad is crazy to sit by and watch the transition. I am sure it is even worse with Bulbar version. I will your mom and family in my thoughts and prayers.
@gingerrett1298
Жыл бұрын
I love your videos. Very informative. My Uncle had ALS and it was a long-drawn-out Slow and as you say horrific experience.
@stevenscaturro4712
Жыл бұрын
Hi Julie. Horrific is an accurate description. My father, Grandmother, Aunt and cousin all died of ALS. It is very painful to witness. Thank you for helping people understand.
@betterwiththeirish
Жыл бұрын
Wow that’s a lot! My Aunt had it and it’s so sad and horrible to watch.
@stevenscaturro4712
Жыл бұрын
@@betterwiththeirish I'm sorry you also had to witness a loved one going through ALS. It is awful.
@grandmanancy4719
Жыл бұрын
@@betterwiththeirish Yes, ALS can be genetic.
@sueferguson7288
Жыл бұрын
You are so good explaining! The compassion that you have comes through your videos
@tranquility9325
Жыл бұрын
She has a beautiful soul.
@zhailey13
Жыл бұрын
You are truly wonderful!!! Thank-you for giving us these videos!!!❤️❤️❤️❤️❤️❤️❤️❤️
@teresamurphy5730
Жыл бұрын
My mother died with ALS.. November 2021.. she was 79 , she didn’t look her age, she retired from her job when Covid hit.. she was so active until she came down with this .. she died with in a year .. guess she must have had ALS, longer than she knew , now looking at the systems .. God was merciful she didn’t suffer long .
@sunflowerfields4409
Жыл бұрын
Thank you so much for this video. It came across my feed at exactly the right time. A family member was recently diagnosed with ALS and I am trying to gather as much knowledge as I can. I know ultimately what will happen but people like you make it easier to understand. I am so thankful to people like you who help patients die with dignity.
@cynthiaseavers1444
Жыл бұрын
I'm so glad I found you; it's helped me solo much
@psrwhite
Жыл бұрын
Thank you Julie for all you do!!!
@orgirl2881
Жыл бұрын
Thank you for covering this topic. I don’t have ALS but I have had friends who have passed from it. It is absolutely a horrific way to die. Just good to know that hospice has a good plan for lessening the fear and pain for patients..
@rebeccaschanlaub2863
Жыл бұрын
Thank you for your videos.
@jessicaotero7969
Жыл бұрын
Julie thank you for this
@andiepole2204
Жыл бұрын
My sister’s brother-in-law recently passed due to ALS. He had one of the smart-boards, and that was a wonderful tool. My sister would talk to me frequently about what her BiL was experiencing, and it was exactly as you described; horrific. While most people fear death, it was a merciful relief for him. He fought so hard, but we all knew it was not a fight that he could win. Thank you for covering this topic, and for all of your videos. I worked EMS for a number of years, and had always found hospice nurses to be amongst the most caring and compassionate people I had ever known. Thank you for bringing that compassion to the many families you are a nurse for, as well as educating the public. God bless you.
@DreamsOfFinland
Жыл бұрын
beloved aunt died of ALS 20 years ago and I was unable to be with her towards end. I fear she did not have comfort support to this day.
@juliestewart5707
Жыл бұрын
Thank you for your work and channel.
@gabewilliam779
Жыл бұрын
God bless you for what you do!
@teresahaun5794
Жыл бұрын
My son is 37 years old. He had Mds .He had 2 bone marrow transplants, both failed. He now has aml. Hospice is coming to speak with us Monday. His dad and I are his caregivers. I am so scared for this process. Thank you for your videos and for caring enough to educate.
@adriennef4637
Жыл бұрын
Can you please cover GASTROPARESIS & dying from the malnutrition & dehydration it causes? Thanks for all you do💗
@catherinefreure7083
Жыл бұрын
Excellent...thank you.
@roberthicks4248
Жыл бұрын
Thank you.
@La_cubana
Жыл бұрын
Really I’m happy to see all your videos , help me to understand more about ends life 😭
@enginewatcher6291
Жыл бұрын
Thank you. Xx
@stevenpotochniak8814
Жыл бұрын
Wish I'd had this video before my Mom passed of ALS. I'd describe it as a marathon, not a sprint. You just wake up every day trying to keep them comfortable while their body quits the fight of life. Thanks Julie. Good video.
@tanzanitet8940
Жыл бұрын
Love all your videos, they are so open and honest, and that's what we need. Please could you do a video on end of life for emphysema patients 🤗
@deborahlunt3478
Жыл бұрын
Thankyou for everything u do
@AmericanAkitaClub
Жыл бұрын
Wow fantastic videos !!! Thank you for this new series andddd all the videossss! God blesssss
@friendlymedstudent3991
Жыл бұрын
Hi Nurse Julie! You inspired me so much to keep searching for a mentor physician for palliative care, that I found one today… and we are working on starting an interest group at my medical school. Thank you for being awesome and I look forward to joining the medical field with more people like you ❤️
@susanlong8978
Жыл бұрын
MY DAD DIED OF ALS...HE WAS MY HERO!!
@lauraeaton5414
Жыл бұрын
I have a super lady in our church who was diagnosed with ALS right after the pandemic hit. She has progressed so fast in the last year. I know she wants to be active but can not Bush her hair anymore. She still is thankful for every day the LORD gives her.
@grandmanancy4719
Жыл бұрын
If anyone on the site has familiar with ALS, please check with hospitals to see if they want to test your blood for research on this type of ALS that is genetic. I live near Washington U in St. Louis, MO, and provided my blood to them. There was no fee and it may help find a cure.
@nancylyon-gray3499
Жыл бұрын
Thank you so much!
@hospicenursejulie
Жыл бұрын
You're welcome!
@carlawilliams5132
Жыл бұрын
my neighbor has als and its progressing fast… its so sad … but ignoring it does no good and i dont Thank the people that have it want to ignore it either it probably helps for them to have those around them acknowledge it and actually understand it
@danahartmann6258
Жыл бұрын
My husband was denied hospice care. I and my children were his only care givers. He was 45.
@grannys-cooking-faith
Жыл бұрын
Thank you
@danamcgarry7875
Жыл бұрын
Have witnessed death but not from ALS; it sounds cruel and terrifying. As you say, knowing can reduce fear, so much appreciated. Asking if patients are heavily medicated at the very end to reduce suffering caused by a sense/feeling of choking/asphyxiation?? Terrifying!
@Bluelargo50
Жыл бұрын
TY. Good one!
@clairestephens4916
Жыл бұрын
Please do a video on Primary Biliary Cirrhosis. My Mama had Primary Biliary Cirrhosis and I was completely blown away at how fast she went from working (yes she was still working full time at 79 years old at a local college in the mail room) to looking like skin and bones and super confused because of the ammonia in her bloodstream. Because of the confusion it was hard to get through to her that she was dying, to this day l don't think she ever came fully out of denial. So I never got a goodbye out of her, no instructions on what she wanted, her wishes as far as funeral stuff or just general life things, she thought she was going to get better and go back to work.
@dirtisbetterthandiamonds
Жыл бұрын
Ankylosing Spondylitis..my husband can no longer do anything that requires him to expand his rib cage like cough hard, sneeze, vomit. His labs have been coming back ok but he's been on the highest dosage of weekly methotrexate for almost ten years now. He's not even 50 yet 😔 (blind in one eye, very very bent over now, had 9 inches of his intestines removed, can't straighten his arms or legs anymore. He was 5'10 now about 5'2" just to give you more of an idea of how far along it is..). He still eats normally, even drives occasionally for very short trips. Then he's down in bed for several days straight before he can recover enough to even run a load of laundry. One Humira injection a week as well. I don't know where we go from here...
@laniejones8747
Жыл бұрын
Yes, please.
@dawnwalker5803
Жыл бұрын
Julie, I admire you. As I have mentioned before I was a home care hospice nurse. I just also want to mention that I live in Florida on the west coast, and hurricane Ian is coming. So, if I don't comment to your videos anymore, you will understand. God bless you so much Juile.
@Jennz_Journey22
Жыл бұрын
Stay safe!
@tranquility9325
Жыл бұрын
Just checking on you.. are you ok?
@dawnwalker5803
Жыл бұрын
Yes, we survived! Lots of damage to our house and property, but my husband, my great neice and our 5 dogs survived! Thanks for asking !
@tranquility9325
Жыл бұрын
@genavive very good to hear. I'm sorry about the damage, but glad everyone made it. Yw hon ❤️
@selmaalva9031
Жыл бұрын
When my father passed away, to make him comfortable one medication along with others was Morphine, it helped him greatly. This scares me so much because I am allergic to Morphine which makes my heart race and my body shake!
@judykay2960
Жыл бұрын
When there's a morphine allergy, often the doctor will prescribe a different medication in place of morphine, such as dilaudid (hydromorphone) or oxycodone, which work very similarly to morphine, so don't be afraid!
@jemimaaidoo3006
Жыл бұрын
I am a Registered General Nurse in my country. I recently discovered your you tube channel. I have recently been interested in palliative care and thru you hospice care . I don't have any idea about it or how to get an education on it. I find yourchannel interesting so I'm going to follow you on KZitem. If you have other media I can learn more too please let me know as I do my own research
@jandljacobsen
Жыл бұрын
Unless you have already done videos could you do videos for liver failure or kidney failure?
@kelliewhyte_85
Жыл бұрын
Yeah I have a good chance of passing from kidney failure at some point in my life. I only have 1 kidney that only works 60% of what it should, due to losing the other one at age 9 from kidney cancer (my kidney only works 60% because there was cancer on that one too) I also had a liver resection at age 11 from liver cancer so maybe that could be a possibility too? But last time I had my liver checked it worked 100%, so maybe not.
@bestlifenavigator1709
Жыл бұрын
Thank you for all you do Please do a video on IPF last days Thank you
@Carnicrazy
Жыл бұрын
A coworker friend of mine died of ALS. Devastating. 😳
@mojavewolf1
Жыл бұрын
My uncle was not sick a day in his life until his late fifties he started slurring his speech ! He was diagnosed with ALS . This is how we lost him . His hair I swear practically turned white overnight . He could not talk and he had a gtube . He loved his coffee and he couldn’t even enjoy a cup anymore . His liquid diet was delivered . It’s a horrible disease .My uncle was a small man and he couldn’t afford to lose any weight either.It’s horrible.
@poembryo
Жыл бұрын
Huntington's disease would be an interesting one to cover.
@andrewdolby178
Жыл бұрын
Thankyou
@shihtzuluvrtwo6386
Жыл бұрын
My FIL passed from ALS. Watching his decline was painful.
@kellylaher7512
Жыл бұрын
My mom had ALS. She passed 22 years ago. I had a newborn and taking care of her as well. It was horrific. I do not wish this disease on anyone. I miss her every single day even still.
@terilittle8078
Жыл бұрын
My great grandmother and my father both died from ALS then in March of 2021 my brother lost his battle with it as well! In my opinion Horrific doesn’t even come close but honestly there’s no other way to describe it 😢
@grandmanancy4719
Жыл бұрын
My family has the familiar form of ALS too. I volunteer to assist in fundraising for research. The Ice Bucket Challenge helped a great deal in finding a cure. Fingers crossed it will be soon.
@terilittle8078
Жыл бұрын
@@grandmanancy4719 Yes it did, that raised so much awareness also!
@ddsdesignz5174
Жыл бұрын
Thank you for your videos - they are very helpful. Could you describe Congestive Heart Failure? The symptoms sounds a lot like ALS at the end. [My grandmother passed from that many years ago. She was in the hospital and right toward the end she was able to fall asleep. But then the doctor came in a woke her - this made her angry. She was unable to fall back to sleep until she died.]
@lindacook4032
Жыл бұрын
My sister in Law passed away from ALS. We contacted Hospice and I have to say they were of little help , most of the time they never even showed up. My mom passed from cancer on Hospice in the state of Florida and they were wonderful. My question is my sister In Law was in NC they told us they didn’t have funding for her area .. is location a factor in hospice.
@JP-tl8rr
Жыл бұрын
A fellow worker of mine wife has ALS, she was a charge nurse and she has declined rather fast. She has a smartboard / tablet, she has been in the hospital for a year now because the insurance cant get their act together and the night shift is horrible in care. Thank you for your videos, as being a EMT and a law enforcement officers i have seen death many of time.
@grandmanancy4719
Жыл бұрын
My mother and many relatives have died from ALS. My mom had Bulbar ALS and couldn't talk for a year. My mom wrote on a Mattel toy erasable tablet to communicate. It is such a brutal disease. Hope a cure comes soon.
@brendamiller8320
Жыл бұрын
I took care of an Als patient she had such a very hard time.
@MyLove-qi6lg
Жыл бұрын
Could you do a video about passing with COPD please?
@deedeehubbs948
Жыл бұрын
Yes please, my husband has severe COPD, completely oxygen dependent, and bedridden 💔
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