You are 100% correct about how every case is different. My best friend died of ALS 11 years ago, when he was only 30. They tried to give him all kinds of medication‘s like morphine to slow him down towards the end and because of the idiopathic nerve pain that he was dealing with (which is very uncommon for ALS) his opiate tolerance was so high that it did nothing. But, he was fighting a pseudomonas infection in his tracheostomy, and had been for at least six months. He had lost all but his eye movement, but even that was starting to go. He was taken off of his ventilator once he was completely unresponsive. That disease was the worst thing I’ve ever seen. I couldn’t imagine a more cruel and heartless way to die, especially for a man who is so vibrant and so active and so full of love. He did not deserve it. But, a large group of our friends got together and help take care of him until the end, and I feel very very very lucky to have been part of that group. I feel very lucky to have been there holding his hand when he died. It was an honor.
My father died of ALS, it was the most horrifying 3 years. I watched this strong do everything himself guy go to being dependent on others for everything. At the end he asked if I loved him to let him go, so I did. I still miss him every day.
My wife is 60 and was diagnosed with ALS just over a year ago. I've been her primary caregiver since retiring a year ago. Her progression has been quick. She uses a Tobii speak device that allows her to communicate with all the visitors we receive. Her legs gave out weeks ago and hands and arms continue to weaken. We're surely blessed with great friends and family. As her breathing has become more laborious, we recently reached out to hospice for help. They should be here in a few days to evaluate the situation. She's been a trooper through this arduous journey and we have surely grown from the experience. Keeping her comfortable is the main goal each day. Thank you Julie for what you do! Thank you for this video to give me more understanding of what may be expected. ALS is so unforgiving!
Here in Holland euthanasia is legal, under strict control from multiple doctors. And with ALS the doctors always approve for this procedure, it’s such a hard decease that the doctors often advice to think of this. My uncle died peacefully before all this could happen to him, i,m so great-full for that. He planned the day and time, and we where all with him. I held his hand and it was so peaceful. Sorry if this is disturbing to people where euthanasia is illegal.
It's only disturbing for those that don't have the laws in place ha ha. Lots of states in lots of countries allow it to an extent. I like the Canadian laws the best, but no I don't live in Canada. It will become legal in my state about this time in 2023, but only for the terminally ill, with no more than 6 months left to live or 12 months in a neurodegenerative disease Like ALS.
I find it disturbing that my mother in law would have to move somewhere very far away to have a legal, peaceful death without suffering through ALS. Your country is advanced.
Maybe euthanizing pets is something we shouldn't have started. I am only saying there are a few reasons people and animals stick around. A lot of the time it actually helps people learn, helps them let go, allows them to be completely selfless and show high capacities of care and l9ve towards their dying loved one. It gives everyone, the dying and the living, more chances to use what time they have left for anything helpful or good. I would personally go through with it. However, I did put my dog to sleep and have felt oddly terrible since. She couldn't walk and she had cancer throughout her body. But I should have taken the time to truly care all the way til the end, like I would a loved one.
@@Nopety-Nope oh my goodness no, suffering doesn't have to happen to learn how to care and love others. I don't mean you have to give up at the initial start of an illness.. .only when you get to the worst part where someone is suffering and suffering cannot be controlled.. They should not have to suffer if they choose, there is no reason for it. Instead people are treated as disposable and housed in nursing homes where it is a money maker yet they don't have enough staff to properly care for those dying. Now if you are lucky and have someone to care for you that is great but it puts a lot of stress on that one person Especially when people are pumped full of medication to keep them barely alive. I have cared for both of my dying parents but I certainly don't see a need for suffering (I worked for WVU Surgery /Trauma, I had a pain pump ordered for my dad who was dying of esophageal cancer) and don't want to put my family through an extended slow death. Maybe it is because all my family work in the medical field but many people feel this way.
@@Nopety-Nope yeah, that's a nope for me. I gave both of my dogs a beautiful, painless death, at home. They never knew a thing. Zero regrets. And if I had ALS, I too would ask for euthanasia. You're fully lucid as your body forgets how to swallow and breathe, and many have no way to communicate at all. A horrifying, slow death. I think everyone should have the choice to forgo that kind of terrible suffering. I would respect someone's decision to go through that process if that's what they prefer, but I wouldn't blame anyone who would rather skip to the end.
@@carriehazel77 I very much understand the intellectual side to this. I just don't think euthanization should be treated like medicine or like taking vitamins. It should remain under scrutiny. We all know when things get out of hand and everyone starts justifying it with insane logic, it is hard to put the reigns back on. As it was said in another video, young people often want to live and therefore have a stressful death. The key is they want to live. So who decides death for young people who can't speak? It can get ugly.
@@carriehazel77 I also put my dog down. I felt very hypocritical and wondered if that was something that was pushed in society before my time and I am just being a sheeple. Truly. I have no idea if I did the right thing in that sense. But on that intellectual side, I can say she lost ability of all her body except her head. She grimaced when we moved her. I could see in her eyes she desired to run around outside. I was feeding her broth with a syringe not knowing I could have fed her dog food. I wanted to set her free. So I did. I get it. I think people are way more complex, but I understand your thoughts.
I have ALS and I found this channel a couple months ago. As I am preparing for what is to come, it gives me a feeling of peace to watch your videos, Julie. I learn a lot from you and I really appreciate the time and energy you put into not only your career, but in these videos. Thank you so much for your service!
Thank you, Julie, for posting this topic. Years ago, I was caring for a hospice patient, who was in her early 40s, and I was in my late 30s. Caring for her was difficult as she was at times non-compliant regarding taking the meds to relieve her discomfort. She wasn't on a vent and never was placed on one. She couldn't speak but had a smart board that was wired to her eyeglass frames, there was a sensor that could follow her eye movements so that she could select letters and words to compose her thoughts (this was back in the 1990s). I eventually requested to be taken off her case, because as a nurse, I felt that I couldn't do anything for her that could help her mentally and physically. This lady was the hardest of all the ALS patients that I had ever cared for. You are absolutely correct about nursing an ALS patient, as the disease makes nursing a challenge.
We can see that it really does something to you... how "easy" you educate us over death and dieing, how hard is this one... Nothing less then respect for all of you 💖
Medication she's referring to is spelled Roxanol, not 'rocks and all' which is what's printed out on the captions. Roxanol is an extended release form of morphine.
More concentrated so less needed to be effective … several reasons this is used especially as end of life approaches. Roxanol is fast acting (as stated) not extended release.
Jules. You have such a beautiful manner to caring way you discuss such horrifying “end days”. Well done you I’m sure you’re a big comfort to many who’re interested in this subject/s…. And warmest regards from Australia
I've just lost two dear friends, both in their early 50's, to this despicable disease. I have MS, so I'd like to hear your experience with this. Thank you for covering ALS. Wish there was a cure.
My uncle had ALS- horrible disease. His started in his throat/ mouth. Aspiration pneumonia is what caused his death- I can’t imagine him continuing to suffer though if that had not happened to him. Thanks for all you do.
My mom was placed on hospice at the end of June. I just lost my mom last Wednesday 8/17/22. I found your channel abt a month ago and oh my! You have bn such a great help. Keep it goin. You’re making this particular space a better place. Thank you, Thank you, Thank you.❤️
I hate ALS--it is a gruesome tortuous death. The one patient I lost to this, died unexpectedly with zero signs of imminent death, no known infections at the time, no history of heart disease, etc. I always felt it was assisted suicide with the help of his wife, and I fully supported their decision, without saying so.
Our friend died from this, his wife died by suicide (drowning) when he was diagnosed. He died 20 months later. Rest in peace Bob and Caroline .. so sad.
I'm so glad this channel..Ive been listening to Kari the mortician..she answer questions about the after death side..I guess I don't know much about the dying process either..I'm almost 72..and as far as being sick..I've been blessed..with pain not so lucky..agter 2yrs and 3 PCPs a cardiologist then a neurologist..it seems I've had a stroke..the only reason I found out is bc I knew something was wrong..I'm going to listen to you..and learn more..and I'm not being morbid..but I am curious..I make light of it bc I don't want my 6 and 9 yr great grandchildren to be scared..I'm sorry this was so long..but I'm so glad I found you..🕊❤
I think curiosity prepares us, may answers questions, & gives peace. I think when loved one passes we search. @Kari the Mortician helps us understand more. My mommy is 76 & grew up caring for the dead. Was her normal. I didn't get it. Never had touched a dead body. Was scared. My brother in law passed young yet terminal. Had the opportunity to be there & help prepare him when others couldn't. Supernatural strength. I believe that I only could do that because of hearing my moms stories & stance on caring for the dead & I think it's beautiful & necessary to make it OK for your your grand babies. I'm pushing 50 & mommy's words were next to me while doing what needed to be done for my sister when she couldn't. Childhood wisdom kicked in at that moment. My mommy there. Me & my daddy carried him out. My point..teach your grand babies with parents consent of course that's it's ok. Love & care in life & death Because you never know when it'll happen & you'll give them the wisdom. Spent 48yrs being afraid, spent 1 night that was biggest blessing in my life. To care for him, prepare him. Sorry so long & hope what I'm trying to say is coming out right.
@@jenniferglosser5161 I do agree with you totally..my 9yr old great grandson talks to me about all things lol..he asked me not long ago..if I was going to be buried..I don't know where that came from..he's like me..interested by all things..I told him I wanted to be cremated..he stopped what he was doing..looked at me and said..very seriously..what if I don't know want you to..so we talk..I'm always honest with them..thank you..for your response 🕊❤
@@indigohalo3421 Death and Taxes, young man, Death and Taxes. My oldest son was like that at a very young age too. I think the peace one personally has around this subject and others like them is more important than the words one uses.
I read Tuesdays with Morris and that’s how I learned about this horrible disease. It remains one of my favorite books...the patient was strong and inspiring. But it’s so very sad. It breaks my heart that people have to endure such a horrible illness and that their loved ones have to watch. You are amazing for what you do. 💕
I'm so Happy that you are doing these videos.i worked with elderly and was with alot of them when they passed. As you said most are ready to go "Home". But most family members were not. You are doing a Great Service in trying to prepare the families of what is to come. Thank you.
My mother died in 2019 from ALS. We believe she had it for about a year or more before actually being diagnosed, all the signs were there. Once she got diagnosed she died a couple months later. Very fast and progressive for her, we didn't really have time to process what was going on and what was to come in those few months. This disease is heart breaking. I'll never forget my mom having the hardest time breathing. Thank you for covering this.
My mom passed in 2022. It pains me to this day to watch the most beautiful and strongest person I know lie helpless and I couldn't do anything for her.
I have had hospice at my home 4 x. My mom, my friend, my husband and my boyfriend. I wish I would have found you sooner though hospice nurses are 😇 Angels. Now I am 65 and my 70 yr old sister has moved in for life. What strikes me is the placid. look that comes over their face when they go. A very special thank you for educating everyone on what should be a peaceful death.
Thanks Julie for an informative video on ALS. Keep up the great work you do demystifying death,dying and terminal illnesses.The better the public are informed the less frightening it becomes for all concerned.Thanks again and take care of yourself.
i’m struggling with the similar situation. My mom has end-stage multiple sclerosis. She was diagnosed fall of 2004 in advanced July 2015. She went into long-term care custodial care September 2016 suffered a stroke December 2016 that left her paralyzed on her dominant side recently, she was downgraded to honey thick, nectar, thick diet. She is nonverbal, and that took place just before the pandemic, but I’m at the point where I can no longer go and see her because it’s ugly. She has tears in her eyes and she can’t verbalize anything and she’s trying to speak and she can’t get anything out in her eyes keeping up and there’s nothing I can do for her and it’s just heartbreaking.
My brother had ALS and he died at home and in his sleep. I never got to see him in person after his diagnosis, but it was heartbreaking to see pictures of a once athletic man physically destroyed and wheelchair bound. 😢😢😢
How long before a sufferer is completely paralysed & unable to communication before they die? How can you tell during that period if they're comfortable when there's no means of communicating. If they're too hot/cold, have an itch, are in pain, are distressed/panicky/afraid? Several family members died with ALS & it troubles me. Hospitals have no time or staff to ensure these sufferers are comfortable & that's where my relatives died.
My BIL died a year ago February from ALS. Only 6 months earlier did he get a diagnosis, his hit right in the non automatic muscle, lungs. It was so fast in one way yet agonizing in so many other ways. I wish we got hospice in earlier than we did. They were a God send.
They said my mom had als but after losing mobility in her arms and legs I took over everything she got came from me she regained use of arms and was getting some movement in her legs my step dad kicked me out she was dead two weeks later
My dad suffers from a lot of secretions & coughing episodes because of swallowing difficulties. He has vascular parkinsonism. Can his secretions be helped & how does this work please? Thank you
ALS is amyotrophic lateral sclerosis and is also known as Lou Gehreg's disease. It mainly affects very athletic people. Professor Stephen Hawking apparently had one type of ALS. Life expectancy is maximum of five years after diagnosis. There is no cure. Those who get it physically wither and die.
Please do video on advanced multiple sclerosis with brain stem stroke syndrome. My mom was just placed on hospice. Exact symptoms. Non-verbal, max assist. Her eyes are now at times “blank” long road for her she was diagnosed with MS in 2004 at age 57. Stroke in 2017. recently downgraded to honey, thick diet from thin pureed.
Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
I am so glad you had the courage to talk about ALS. I nursed my husband George as he declined for his last two years with MND. He had the bulbar strain. He was completely dependent on the ventilator. He had no peg as this was his choice. His decline from mobility wheelchair to bedridden was very fast. Hospice was amazing they gave me all the advice that I needed to care for him on my own. I was 75 years old at the time. It was so hard to split the difference between wife and carer, we got through it. It was love that got us through. Four days before he died I couldn’t manage the bed machine and his breathing machine it just kept faulting. I think it was the difficult weight loss this the machine just couldn’t adjust to, so I was up most of the night. He hadn’t eaten for months. He was just bones. My heart was so broken so I asked that he be taken to hospice I knew he was close to dying and I wanted him to be as comfortable as possible. Obviously he couldn’t talk anymore. I often feel that I failed him taking him away from home but I was so afraid that I would miss something and make him more uncomfortable. When he died he was black in his hands and body. I only wish that I could have done more. The saddest part was that he had to remove the mask himself. How hard when suffering so much. Thank you so much for bringing up ALS as we call it here in New Zealand Motor Neoron Disease. My only question is when he removed the mask would have died straight away. His heart was still beating I so would love reassuring that he didn’t suffer even more than necessary when he eventually found the strength to remove from his mouth and nose himself. I am so grateful to Hospice and wonderful people like yourself. ❤️
i’m struggling with the similar situation. My mom has end-stage multiple sclerosis. She was diagnosed fall of 2004 in advanced July 2015. She went into long-term care custodial care September 2016 suffered a stroke December 2016 that left her paralyzed on her dominant side recently, she was downgraded to honey thick, nectar, thick diet. She is nonverbal, and that took place just before the pandemic, but I’m at the point where I can no longer go and see her because it’s ugly. She has tears in her eyes and she can’t verbalize anything and she’s trying to speak and she can’t get anything out in her eyes keeping up and there’s nothing I can do for her and it’s just heartbreaking.
You are 100% correct about how every case is different. My best friend died of ALS 11 years ago, when he was only 30. They tried to give him all kinds of medication‘s like morphine to slow him down towards the end and because of the idiopathic nerve pain that he was dealing with (which is very uncommon for ALS) his opiate tolerance was so high that it did nothing. But, he was fighting a pseudomonas infection in his tracheostomy, and had been for at least six months. He had lost all but his eye movement, but even that was starting to go. He was taken off of his ventilator once he was completely unresponsive. That disease was the worst thing I’ve ever seen. I couldn’t imagine a more cruel and heartless way to die, especially for a man who is so vibrant and so active and so full of love. He did not deserve it. But, a large group of our friends got together and help take care of him until the end, and I feel very very very lucky to have been part of that group. I feel very lucky to have been there holding his hand when he died. It was an honor.
@@helloiamthegirlracer my mom passed from ALS. The God concept went out the window after watching her suffer.
My father died of ALS, it was the most horrifying 3 years. I watched this strong do everything himself guy go to being dependent on others for everything. At the end he asked if I loved him to let him go, so I did. I still miss him every day.
You did the right thing god bless you I am sure your loved one is with you in spirit ❤
Multiple Myeloma is right behind ALS . . .
Advanced MS is right behind it along with brain stem stroke
My wife is 60 and was diagnosed with ALS just over a year ago. I've been her primary caregiver since retiring a year ago. Her progression has been quick. She uses a Tobii speak device that allows her to communicate with all the visitors we receive. Her legs gave out weeks ago and hands and arms continue to weaken.
We're surely blessed with great friends and family.
As her breathing has become more laborious, we recently reached out to hospice for help. They should be here in a few days to evaluate the situation. She's been a trooper through this arduous journey and we have surely grown from the experience. Keeping her comfortable is the main goal each day. Thank you Julie for what you do! Thank you for this video to give me more understanding of what may be expected. ALS is so unforgiving!
Here in Holland euthanasia is legal, under strict control from multiple doctors. And with ALS the doctors always approve for this procedure, it’s such a hard decease that the doctors often advice to think of this. My uncle died peacefully before all this could happen to him, i,m so great-full for that. He planned the day and time, and we where all with him. I held his hand and it was so peaceful. Sorry if this is disturbing to people where euthanasia is illegal.
It's only disturbing for those that don't have the laws in place ha ha. Lots of states in lots of countries allow it to an extent. I like the Canadian laws the best, but no I don't live in Canada. It will become legal in my state about this time in 2023, but only for the terminally ill, with no more than 6 months left to live or 12 months in a neurodegenerative disease Like ALS.
I find it disturbing that my mother in law would have to move somewhere very far away to have a legal, peaceful death without suffering through ALS. Your country is advanced.
If I was like that I would like to have the option of euthanasia.
We treat our pets better than we do humans by not allowing them to suffer.❤️
Maybe euthanizing pets is something we shouldn't have started. I am only saying there are a few reasons people and animals stick around. A lot of the time it actually helps people learn, helps them let go, allows them to be completely selfless and show high capacities of care and l9ve towards their dying loved one. It gives everyone, the dying and the living, more chances to use what time they have left for anything helpful or good. I would personally go through with it. However, I did put my dog to sleep and have felt oddly terrible since. She couldn't walk and she had cancer throughout her body. But I should have taken the time to truly care all the way til the end, like I would a loved one.
@@Nopety-Nope oh my goodness no, suffering doesn't have to happen to learn how to care and love others.
I don't mean you have to give up at the initial start of an illness.. .only when you get to the worst part where someone is suffering and suffering cannot be controlled..
They should not have to suffer if they choose, there is no reason for it.
Instead people are treated as disposable and housed in nursing homes where it is a money maker yet they don't have enough staff to properly care for those dying.
Now if you are lucky and have someone to care for you that is great but it puts a lot of stress on that one person Especially when people are pumped full of medication to keep them barely alive.
I have cared for both of my dying parents but I certainly don't see a need for suffering (I worked for WVU Surgery /Trauma, I had a pain pump ordered for my dad who was dying of esophageal cancer) and don't want to put my family through an extended slow death.
Maybe it is because all my family work in the medical field but many people feel this way.
@@Nopety-Nope yeah, that's a nope for me. I gave both of my dogs a beautiful, painless death, at home. They never knew a thing. Zero regrets. And if I had ALS, I too would ask for euthanasia. You're fully lucid as your body forgets how to swallow and breathe, and many have no way to communicate at all. A horrifying, slow death. I think everyone should have the choice to forgo that kind of terrible suffering. I would respect someone's decision to go through that process if that's what they prefer, but I wouldn't blame anyone who would rather skip to the end.
@@carriehazel77 I very much understand the intellectual side to this. I just don't think euthanization should be treated like medicine or like taking vitamins. It should remain under scrutiny. We all know when things get out of hand and everyone starts justifying it with insane logic, it is hard to put the reigns back on. As it was said in another video, young people often want to live and therefore have a stressful death. The key is they want to live. So who decides death for young people who can't speak? It can get ugly.
@@carriehazel77 I also put my dog down. I felt very hypocritical and wondered if that was something that was pushed in society before my time and I am just being a sheeple. Truly. I have no idea if I did the right thing in that sense. But on that intellectual side, I can say she lost ability of all her body except her head. She grimaced when we moved her. I could see in her eyes she desired to run around outside. I was feeding her broth with a syringe not knowing I could have fed her dog food. I wanted to set her free. So I did. I get it. I think people are way more complex, but I understand your thoughts.
I have ALS and I found this channel a couple months ago. As I am preparing for what is to come, it gives me a feeling of peace to watch your videos, Julie. I learn a lot from you and I really appreciate the time and energy you put into not only your career, but in these videos. Thank you so much for your service!
Sorry you have ALS, I hope it develops very slowly and you have plenty of time …
People diagnosed with a terminal disease should know what their death will be like so that they can make choices while they can.
Thank you, Julie, for posting this topic. Years ago, I was caring for a hospice patient, who was in her early 40s, and I was in my late 30s. Caring for her was difficult as she was at times non-compliant regarding taking the meds to relieve her discomfort. She wasn't on a vent and never was placed on one. She couldn't speak but had a smart board that was wired to her eyeglass frames, there was a sensor that could follow her eye movements so that she could select letters and words to compose her thoughts (this was back in the 1990s). I eventually requested to be taken off her case, because as a nurse, I felt that I couldn't do anything for her that could help her mentally and physically. This lady was the hardest of all the ALS patients that I had ever cared for. You are absolutely correct about nursing an ALS patient, as the disease makes nursing a challenge.
Thank you for posting this nurse Julie, I am helping care for a relative with ALS, and appreciate your help, you rock!
We can see that it really does something to you... how "easy" you educate us over death and dieing, how hard is this one... Nothing less then respect for all of you 💖
Medication she's referring to is spelled Roxanol, not 'rocks and all' which is what's printed out on the captions. Roxanol is an extended release form of morphine.
It is not an extended release morphine. It is a fast acting.
More concentrated so less needed to be effective … several reasons this is used especially as end of life approaches. Roxanol is fast acting (as stated) not extended release.
Aaah.. I was so confused!
Immediate release, correct, sorry I was thinking of MS contin.
Jules. You have such a beautiful manner to caring way you discuss such horrifying “end days”.
Well done you
I’m sure you’re a big comfort to many who’re interested in this subject/s….
And warmest regards from Australia
I've just lost two dear friends, both in their early 50's, to this despicable disease. I have MS, so I'd like to hear your experience with this. Thank you for covering ALS. Wish there was a cure.
My uncle had ALS- horrible disease. His started in his throat/ mouth.
Aspiration pneumonia is what caused his death- I can’t imagine him continuing to suffer though if that had not happened to him.
Thanks for all you do.
My mom was placed on hospice at the end of June. I just lost my mom last Wednesday 8/17/22. I found your channel abt a month ago and oh my! You have bn such a great help. Keep it goin. You’re making this particular space a better place. Thank you, Thank you, Thank you.❤️
So sorry for your loss Christy
@@Crystalquartz964 Thank you so much❤️
I hate ALS--it is a gruesome tortuous death. The one patient I lost to this, died unexpectedly with zero signs of imminent death, no known infections at the time, no history of heart disease, etc. I always felt it was assisted suicide with the help of his wife, and I fully supported their decision, without saying so.
Our friend died from this, his wife died by suicide (drowning) when he was diagnosed. He died 20 months later. Rest in peace Bob and Caroline
.. so sad.
I'm so glad this channel..Ive been listening to Kari the mortician..she answer questions about the after death side..I guess I don't know much about the dying process either..I'm almost 72..and as far as being sick..I've been blessed..with pain not so lucky..agter 2yrs and 3 PCPs a cardiologist then a neurologist..it seems I've had a stroke..the only reason I found out is bc I knew something was wrong..I'm going to listen to you..and learn more..and I'm not being morbid..but I am curious..I make light of it bc I don't want my 6 and 9 yr great grandchildren to be scared..I'm sorry this was so long..but I'm so glad I found you..🕊❤
I think curiosity prepares us, may answers questions, & gives peace. I think when loved one passes we search. @Kari the Mortician helps us understand more. My mommy is 76 & grew up caring for the dead. Was her normal. I didn't get it. Never had touched a dead body. Was scared. My brother in law passed young yet terminal. Had the opportunity to be there & help prepare him when others couldn't. Supernatural strength. I believe that I only could do that because of hearing my moms stories & stance on caring for the dead & I think it's beautiful & necessary to make it OK for your your grand babies. I'm pushing 50 & mommy's words were next to me while doing what needed to be done for my sister when she couldn't. Childhood wisdom kicked in at that moment. My mommy there. Me & my daddy carried him out. My point..teach your grand babies with parents consent of course that's it's ok. Love & care in life & death Because you never know when it'll happen & you'll give them the wisdom. Spent 48yrs being afraid, spent 1 night that was biggest blessing in my life. To care for him, prepare him. Sorry so long & hope what I'm trying to say is coming out right.
@@jenniferglosser5161 I do agree with you totally..my 9yr old great grandson talks to me about all things lol..he asked me not long ago..if I was going to be buried..I don't know where that came from..he's like me..interested by all things..I told him I wanted to be cremated..he stopped what he was doing..looked at me and said..very seriously..what if I don't know want you to..so we talk..I'm always honest with them..thank you..for your response 🕊❤
@@indigohalo3421 Death and Taxes, young man, Death and Taxes. My oldest son was like that at a very young age too. I think the peace one personally has around this subject and others like them is more important than the words one uses.
I read Tuesdays with Morris and that’s how I learned about this horrible disease. It remains one of my favorite books...the patient was strong and inspiring. But it’s so very sad. It breaks my heart that people have to endure such a horrible illness and that their loved ones have to watch. You are amazing for what you do. 💕
I'm so Happy that you are doing these videos.i worked with elderly and was with alot of them when they passed. As you said most are ready to go "Home". But most family members were not. You are doing a Great Service in trying to prepare the families of what is to come. Thank you.
My mother died in 2019 from ALS. We believe she had it for about a year or more before actually being diagnosed, all the signs were there. Once she got diagnosed she died a couple months later. Very fast and progressive for her, we didn't really have time to process what was going on and what was to come in those few months. This disease is heart breaking. I'll never forget my mom having the hardest time breathing. Thank you for covering this.
My mom passed in 2022. It pains me to this day to watch the most beautiful and strongest person I know lie helpless and I couldn't do anything for her.
I have had hospice at my home 4 x. My mom, my friend, my husband and my boyfriend. I wish I would have found you sooner though hospice nurses are 😇 Angels. Now I am 65 and my 70 yr old sister has moved in for life. What strikes me is the placid. look that comes over their face when they go. A very special thank you for educating everyone on what should be a peaceful death.
Thanks Julie for an informative video on ALS. Keep up the great work you do demystifying death,dying and terminal illnesses.The better the public are informed the less frightening it becomes for all concerned.Thanks again and take care of yourself.
Thank you for talking about ALS my father in law passed from this and it took him fast. From diagnosis to death was less that a year
Thank you very much for your service and care.❤❤❤
i’m struggling with the similar situation. My mom has end-stage multiple sclerosis. She was diagnosed fall of 2004 in advanced July 2015. She went into long-term care custodial care September 2016 suffered a stroke December 2016 that left her paralyzed on her dominant side recently, she was downgraded to honey thick, nectar, thick diet. She is nonverbal, and that took place just before the pandemic, but I’m at the point where I can no longer go and see her because it’s ugly. She has tears in her eyes and she can’t verbalize anything and she’s trying to speak and she can’t get anything out in her eyes keeping up and there’s nothing I can do for her and it’s just heartbreaking.
You gotta go see her.
My brother had ALS and he died at home and in his sleep. I never got to see him in person after his diagnosis, but it was heartbreaking to see pictures of a once athletic man physically destroyed and wheelchair bound. 😢😢😢
Thank you. My brother has als and is on hospice. I appreciate your comments and look forward to any additional info you may have as it relates to als.
You are an earth angel . 😇
God bless you kind lady
Someone I love was just diagnosed today with ALS. I'm so sad. She has a beautiful, strong faith in Jesus. I appreciate your videos and your honesty.
Thank you for sharing this difficult information and so useful to many... you are an angel for all you do.
Thank u for ur honesty.
Sounds simular to late stage Parkinsons. My mom had. Feeding tube. Infections. Unable to digest food aspiration pneumonia
Hello Julie. I really like the Lady Bug story alot. Would you tell it again with the pictures? Thanks 😊
My mother in law was diagnosed last year. We are just devastated. I hate this.
I lost an aunt, mom, brother and sister to ALS. My neurologist sent me for an EMG. I'm scared.
Thanks to the people told me I wasn't sure
It sounds a bit similar to chronic mercury toxicity as well. Thank you.
How long before a sufferer is completely paralysed & unable to communication before they die? How can you tell during that period if they're comfortable when there's no means of communicating. If they're too hot/cold, have an itch, are in pain, are distressed/panicky/afraid? Several family members died with ALS & it troubles me. Hospitals have no time or staff to ensure these sufferers are comfortable & that's where my relatives died.
My friend just passed away 3 weeks away from als.she only had it for about 15 months.she was only 39 years old
Omg so horrible!! Cant even speak or move or anything! I beg i get ULTRA SUPER doped out if i go out like that. How horrible!!
An online acquaintance lost her brother to this disease.
My BIL died a year ago February from ALS. Only 6 months earlier did he get a diagnosis, his hit right in the non automatic muscle, lungs. It was so fast in one way yet agonizing in so many other ways. I wish we got hospice in earlier than we did. They were a God send.
Please address other terminal diseases. My brother is dying from Multiple Myeloma.
They said my mom had als but after losing mobility in her arms and legs I took over everything she got came from me she regained use of arms and was getting some movement in her legs my step dad kicked me out she was dead two weeks later
I knew a person in hospice for ALS in a facility. She ate & drank & swallowed meds until she passed. Is that normal & is it painful when they pass?
Please can you tell us... does morphine or other medications remove the "air hunger" or feeling of suffocation?
My dad suffers from a lot of secretions & coughing episodes because of swallowing difficulties. He has vascular parkinsonism. Can his secretions be helped & how does this work please? Thank you
My DIL died of ALS, she was only 44😥
My mum died with MND alone. I worry so much that sh chocked to death. Please help
Can you do one on copd?
Question: Are the patients aware of what’s happening?
Unfortunately yes very well.
Can you share EOL for scleroderma, please.
Do you know anything about Parkinson's
I have some tremors and micrographia
The worst disease to get? The worst of all? I think so.
You seem visibly upset in this video. Hope you're alright.
ALS-amyotrophic lateral sclerosis-Lou Gehrig's disease
What is ALS?
That what I want to know
ALS is amyotrophic lateral sclerosis and is also known as Lou Gehreg's disease. It mainly affects very athletic people. Professor Stephen Hawking apparently had one type of ALS. Life expectancy is maximum of five years after diagnosis. There is no cure. Those who get it physically wither and die.
Lou Gehrig’s disease. Amyotrophic lateral sclerosis
Thanks I wasn't for sure.
Thanks
❤️
Please do video on advanced multiple sclerosis with brain stem stroke syndrome. My mom was just placed on hospice. Exact symptoms. Non-verbal, max assist. Her eyes are now at times “blank” long road for her she was diagnosed with MS in 2004 at age 57. Stroke in 2017. recently downgraded to honey, thick diet from thin pureed.
Why not begin by telling us what Als is?
Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.
Almost as bad as Huntingtons.r
I am so glad you had the courage to talk about ALS. I nursed my husband George as he declined for his last two years with MND. He had the bulbar strain. He was completely dependent on the ventilator. He had no peg as this was his choice. His decline from mobility wheelchair to bedridden was very fast. Hospice was amazing they gave me all the advice that I needed to care for him on my own. I was 75 years old at the time. It was so hard to split the difference between wife and carer, we got through it. It was love that got us through. Four days before he died I couldn’t manage the bed machine and his breathing machine it just kept faulting. I think it was the difficult weight loss this the machine just couldn’t adjust to, so I was up most of the night. He hadn’t eaten for months. He was just bones. My heart was so broken so I asked that he be taken to hospice I knew he was close to dying and I wanted him to be as comfortable as possible. Obviously he couldn’t talk anymore. I often feel that I failed him taking him away from home but I was so afraid that I would miss something and make him more uncomfortable. When he died he was black in his hands and body. I only wish that I could have done more. The saddest part was that he had to remove the mask himself. How hard when suffering so much. Thank you so much for bringing up ALS as we call it here in New Zealand Motor Neoron Disease. My only question is when he removed the mask would have died straight away. His heart was still beating I so would love reassuring that he didn’t suffer even more than necessary when he eventually found the strength to remove from his mouth and nose himself.
I am so grateful to Hospice and wonderful people like yourself. ❤️
I think Huntington's affects the brain more than the body and ALS affects the body more than the brain. That's my understanding. Both terrible.
i’m struggling with the similar situation. My mom has end-stage multiple sclerosis. She was diagnosed fall of 2004 in advanced July 2015. She went into long-term care custodial care September 2016 suffered a stroke December 2016 that left her paralyzed on her dominant side recently, she was downgraded to honey thick, nectar, thick diet. She is nonverbal, and that took place just before the pandemic, but I’m at the point where I can no longer go and see her because it’s ugly. She has tears in her eyes and she can’t verbalize anything and she’s trying to speak and she can’t get anything out in her eyes keeping up and there’s nothing I can do for her and it’s just heartbreaking.
What is ALS?
ALS is also known as Lou Gehrig's Disease.